Episode Transcript

Transcript edited by Miri Stalions

Preface

Kylo: You’re listening to Let’s Talk. Let’s Talk is a digital space for students ����ֱ�� experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the opinions or positions of ����ֱ��, PCC Foundation, or our community partners. We broadcast on our home website, , on Spotify, and on XRay, 91.1 FM and 107.1 FM, and KBOO Community Radio, 90.7 FM

Episode Intro – Meeting the Guest

Amanda: Welcome to today’s Let’s Talk Autism podcast. I am your host and producer Amanda, and I was joined today by my guest Anna, who discussed how autism is treated in South Korea in societal and cultural contexts. I have been excited to explore neurodivergence in different countries for some time now, and Anna’s energy and passion was a great way to start off. Among the facets explored included celebrity culture, how autism is portrayed in the media, and how disability is actually treated in society. I hope you enjoy today’s conversation as much as I did. Thank you for joining us for Let’s Talk Autism! I’m the host and producer, Amanda. And I am joined today by Anna, who is going to have an awesome conversation with me about autism in South Korea. I always find it interesting how disability, especially autism, is treated in different cultures. So thank you so much for joining me today, Anna.

Anna: Yeah, I’m actually really excited to. I was getting prepared for this. I was like, “Ooh, I got all this info. Let’s go!” 

Amanda: So my name is Amanda. I use she/her pronouns. I’m finishing up an animal science degree at Oregon State, I’m applying to veterinary school, and I was diagnosed with autism at 31.

Anna: Hi, I’m Anna. I’m a Sonic Arts and Music major ����ֱ�� and I go with she/her pronouns. I’m actually dyslexic and I also have deplexia. But for me, autism and ADHD is something I’m really passionate about, and Korea, because my partner, he’s a musician from South Korea, he’s actually has autism and ADHD, and his life has been really a struggle with the community not accepting him, telling him he shouldn’t be doing certain things, him trying to cope with it in different ways. When I first met him, he was totally frozen, he had no feelings at all on the outside. Nowadays, he uses more like a joking method, but very few people understand him. A lot of people treat him really poorly, and I’m always the biggest advocate for him, so this is my normal ground. It’s how Korea portrays people with a disability and how people are looking at, people in the music and in the acting realm, what they are portraying them as in Korea. So that’s really where I come from because I’m the biggest advocate for it. I’m the person that really started the movement of acceptance with my partner and with my friends, helping them cope with their disabilities. I’m also the biggest person that helped with my partner’s entertainment center to get this movement of understanding. They know that I’m a force to be reckoned with.��

Amanda: Thank you. I would definitely agree that you’re a force to be reckoned with. Even from your first podcast with me, you’re very passionate, you’re very strong willed. And I would say your partner is very lucky to have you as an advocate, and it reminds me of my own partner. It took a while for her to really open up and get comfortable with me as well, and [talk] about her autism. And I’m not saying I’m always perfect with my own autism. And there’s probably moments where you’re kind of painful with dyslexia. But that’s how it is, and all we can do is keep going, you know?

Anna: I think for us, we need another person to help guide us through some stuff, ’cause, we’re very vulnerable to the world. And they’re going to tell us you need to be in a box or you need to be this way. But if we have somebody else to help us, it always makes it better in the long run. So, I think it’s like a partnership.

Autistic Experience in South Korea

Amanda: How is autism treated in South Korea? How are people treated when they disclose, and how common is it that people disclose their disabilities in South Korea to begin with?

Anna: So let’s talk about the broad spectrum of disability in Korea, because really it’s all of them. The idea of disability in Korea is that you’re shunned. In South Korea, there’s a shun culture, meaning if you’re different, if we just don’t like you, we’ll shun you. And this becomes a really big problem, because if something happens or if you are disabled, you have no value to us. To the point that your parents take care of you, you just stay at home, you can’t get a job, you can’t go anywhere, it gets really bad. It actually is kind of portrayed in the K-Dramas that have autism or a disability. There is the shun culture and there is also this crazy idea that if we can’t take care of you and we can’t handle you, we’re going to make you go to a mental institution. It’s almost like in the old days when anybody who had a disability, anybody who was a little funky in their thinking, they would be put into asylum. It’s really the same idea. It’s really sad. And the idea of when we get into mental disabilities, learning disabilities, they just say we just need to help you. You need somebody with you. A lot of the people will not disclose or tell anybody that they have a disability. What’s really sad is if they tell anybody they have a disability, they might be able to go to college, but they will not graduate because the colleges will literally deny them access to graduating. They might not even get into the top universities. There is [this] idea that there’s the top 10, and if you don’t get into one of the top 10, then you’re nothing. And if you do get into one of the top 10, it goes by rank. So you have the first one, which is Seoul National University. And then there’s the University of Seoul, South Korea, and then it goes down. And it’s really crazy to that aspect that everything is a competition. You have to be the fittest and it has made it really bad for people in South Korea to the point that the suicide rate is crazy high. It’s the highest in any country and people are like, oh it’s because of bullying or because they’re just really depressed, because of work or something. But really, it’s also because most people have disabilities. Most people cannot cope with things. If you have depression, anxiety, they’re not really going to help you. I had to help a friend of mine who was older than me when I was in high school and he was in Korea and nobody was going to help him. He was shunned, he had depression and anxiety, he was going through life and he was on the break of committing suicide. I had to come in and say, hey, you value, you matter, and I really helped him and now he’s like really clingy to me because of that. In Korea, support is not there. People look at you and they don’t really support you. They just laugh at you or they make fun of you, or they just see you as different, and they just turn their backs against you. There’s no support at all and when you are disabled, you just stay at home, don’t do anything. You shouldn’t have a job, you shouldn’t be anything. Which is the wrong mentality in the first place, because there’s people that are able, body and mind that can do things and we need everyone’s aspect. And when it comes to people who are not physically disabled, that also becomes a shady spot because they don’t acknowledge that when it comes to the military. In South Korea, when you’re around your late twenties, they want you to go for a military service for around a year and a half now, before it was two years. And, they don’t have anything to help these people. They say, you’re just like all the rest, we’re going to put you in here. First off, you’re going to boot camp, you’re literally going to training to be a soldier. They’re going to bulldoze you, they might sexually assault you, they might do whatever. and this is really wrong and they don’t have any way to help people. If they’re going to do this and they’re not going to acknowledge these people have a disability in the first place and then you put them in something that can make it even worse, that’s a problem. I think what was really crazy is my friends who are autistic, who have depression or anxiety, they go into the military. And I’m like, “Why are you allowing them in here? This is really wrong and they don’t have any way to help people. They’re not going to acknowledge these people have a disability in the first place and then you put them in something that can make it even worse.” That’s a problem. Because first off, somebody who is on the brink of a panic attack, or has suicidal thoughts, should not have a gun, should not know how to load a gun, should not be even around that, because they will probably kill themselves. And I think this is ridiculous, these are the things that they are teaching them, and then they make them go every two to three years to go through first aid training. I guess that works if you’re able-bodied in the first place. But on the other hand, if you’re just giving them a lecture and they’re not hands on, it’s not going to help everyone. They’re just going to look at the person like, Oh, they’re down. What are we going to do? So they don’t know how to teach people. They do not know how to show that it’s acceptable for all people. And you can only get a job for people who are disabled with people who are disabled. They don’t allow you to socialize or be in the community. And I think it’s really interesting because me walking in there and I’m open about my disability. People just look at me and they’re like, wait, what? And I’m like, yeah, this is a thing. People are like this in America, we will say who we are. My partner, he has to hint about disability because they won’t understand that. If you told them, oh, I’m autistic or I’m dyslexic, they’re going to look at you like, so what does that mean? They don’t understand how to make a functioning working place for people with disabilities. You can’t even go to a shopping mall, or a cafe or anywhere. Most people with disabilities can’t go to these things. It’s really crazy, because this is how Korea is. It’s a place where we shun the impoverished, we shun the people who are disabled, and we say, if we can’t help them, then just put them in an insane asylum. And I’m like that’s not gonna help anyone. That actually makes it worse.��

Amanda: I think that’s awesome that you have such a strong background in this knowledge, and it’s awesome that the audience is hearing this. But to reiterate the question: autism is not treated well in South Korea is the attitude, right? 

Anna: It’s not treated very well and it’s not understood at all. They shunned any knowledge or understanding of it, to the point that you don’t even know what it is and if you have it, you’re shamed. You’re shamed to have a disability, when you need a person with a disability to help you in the long run to make things. ‘Cause a lot of people who are disabled are very creative and they actually have great minds and they understand things differently than others. So a lot of these people are going underground and not writing down they have a disability or not knowing they have a disability. I think a big thing is, a lot of times if you have a disability and you don’t know your disability and other consequences with it, like other health issues or whatever, you’ll die silently at home because you don’t go to the doctor. This is becoming even more of a problem this year, because multiple people have died from unknown causes and a lot of them probably had a disability and it’s really sad. This week, they put out a thing saying, oh, let’s put girls in school earlier than boys because they’re not marrying, they’re not producing children anymore. And I’m like, that’s not the issue here. A lot of the issues I’ve been hearing about is men have a higher chance to be violent, and there could be other causes, they don’t understand their emotions because they have to be a perfect society. But nobody’s perfect, and disability has played a big problem with this, it gets to this point where we don’t understand why the issue is there in the first place, and we don’t help people because we don’t know how to feel sympathetic towards people or give any assurance. Somebody told my partner, hey, why don’t you practice the speech you’re gonna give? And he’s like, I’m actually more a physical learner and then they were like, but, if you stutter, they’re going to judge you, they’re going to make fun of you, and he’s laughing cause he’s like, my partner always stutters and there’s always something that’s going to be off. It’s a part of learning, it’s a part of growing and he’s explaining his concepts. He has changed from scared to be himself to where now he is like “I’m going to tell you my dreams, my passion, maybe they’re not all put together so perfectly, but I’m going to show them. I don’t know how to put them in bullet points, but I’m going to show you this. I’m going to show you my dreams, I’m going to show you my vision, I’m going to show you what I’ve been thinking.” And maybe they’re out of the box. But I’m okay with that because I know that at the end of the day, this is what I am and what I can do. Most people cannot open up like that. They are so scared that they’ve put themselves in a place where they’re wearing a mask.��

Amanda: People who have autism, ADHD, or other non physical disabilities how often they even disclose because with the shun culture as you mentioned, would that even be a good idea in South Korea? When your partner did disclose, how was that for him? 

Anna: They pretty much puppy dog them. So when he disclosed that he had autism and ADHD to his friends, they were like, oh yeah, that makes sense, they didn’t care. But to his company, his agency he’s under, they cared so much that they will go on to his Instagram Lives and try and control him. He’s different than other people. He doesn’t take direct rules the same way, and they think oh we need to help him function in society and that’s not how it works and he gets mad. They think, oh, you have to be baby all the time. You’re acting so, out in the box, so we’re going to try and control you and reel you in. So, if you’re different and they see that, they tell you, oh, you need to change and you don’t change, then they’re going to try and control you. You have to be really strong to say, no, I’m not going to be controlled and I’m not going to be ruled by you and I’m going to try my hardest to be myself. And to him, it’s a battle and he’s like, “I’m going to leave soon because I don’t want to be in this relationship with my company.” He’s very happy that this is going to happen because we’re going to be trying to make our own entertainment center for everyone. It’s this idea that if you tell you have a disability, like if you tell that you have autism, that’s a lot of people, they know what autism is, but if you tell them dyslexia, they don’t even know what that is. You can’t even tell them, oh yeah, my partner’s dyslexic. So, when it comes to autism, they do know now, but they’re going to control you. They’re going to control you to the point where you have no freedom or you need to be in this box. And if you don’t conform to that, you’re going to have a war on your hands trying to be different.

Official Public Stances on Disabilities

Amanda: I know that you mentioned in a previous conversation that autism was officially recognized in 2016. So, before that happened, were celebrities disclosing at all? And even after celebrities like your partner did disclose, did it become more publicly acceptable or not to be autistic?

Anna: Let’s just say it has never been publicly acceptable to be autistic in a way, and still today, it’s not. The only thing that is accepted is the title and the understanding of what’s autistic in the sense of what the doctor would know. The original version of The Good Doctor is a really good explanation. They cut this out of the American one, but in the Korean one, what is the start of it, when he’s being explained about his background and who he is. The one head, he’s actually one of the people that took care of him when he was young. He’s explaining his story, and he’s explaining it as how a doctor would explain it. So they’re given all the titles, like he’s a special case of autistic. But through the story, what they’re trying to do is say, “This is not how we describe autism. This is not autistic. This is not who he is. He’s a human, he is different, he is disabled, but he can be many things and you don’t call him what the scientists and the doctors want to call him. You call him who he is.” And through the whole thing, we see other people with other disabilities. We get to understand how a person who is autistic can do many things and how powerful they can be. And how an actually good doctor is not really about the autistic person himself. It’s supposed to be about the person who is saying, hey, guys, cool it. Let him be who he’s going to be and let him work on this. And that was the actual idea of this story. But we took it and changed it when we come to America. And this is the idea, those doctors trying to convey these big words about how he is, and trying to put him on this pedestal and say, this is the percentile, they’re looking at him like a graph or something. But that’s not how it is, it’s not supposed to be that way, but that’s how their society thinks of it. So when it’s like, “Hey, I’m going to be open about my disability,” they don’t know how to handle that. Honestly, a lot of people are not openly discussing if they have autism or ADHD or are dyslexic. They’re just who they are. And I will tell you most, Idols or celebrities, majority of them have a disability. It’s hidden in one way or another, or they don’t know about it themselves because testing is not a big thing. It’s rare to be tested for your disability. And it’s really interesting because people will be like, oh yeah, you danced on tables when you were young and they don’t perceive like, oh, that’s a little odd. He ran through the whole airport when he was five years old. Why would he run all the way there in the first place? They don’t think about that. They just think, “Oh, they’re a little different. They’re a little funny.” So they’re not seen as human with a disability. They’re known as disabled or human and we need to think about that. You are either disabled or human, and the only way they would know that you are really disabled is if you are mainstream disabled. I think that’s the problem, it’s not how it works, it’s like saying everyone has the same gender or whatever.��

Autism in the Mainstream

Amanda: I’m sorry to interrupt you, I was just wondering what mainstream autistic means in that context? ‘Cause when you say mainstream autistic, I just think of the show that The Good Doctor was based on. When you say mainstream, are you talking about the media representation?

Anna: The mainstream, what is put out there, you know, how they’re supposed to be really high on the autistic spectrum, maybe they’re just really out there. Maybe not very verbal. Or they can’t put things in place the same way. The ones that can’t really function in society very well, that’s what they’re thinking of and that’s when they know. Oh, yeah, you’re autistic, and then if you’re on the spectrum, but you can function in society you’re not the idea of the image they put out, on TV, then they don’t understand that. They don’t comprehend that there’s people of all types that are autistic. They don’t think of a spectrum as much as a label. And they don’t think of people as much as disabled.

Amanda: It’s an interesting dichotomy, because on one hand, it sounds like they really want to shun the idea of autism and other disabilities, on the other hand, they have a show in which they’re propping autistic people up. And I was kind of wondering if your partner and other celebrities that did disclose, were they ever propped up in the same way as that character was in that show, or did the companies try?

Anna: No, honestly, they don’t care.

Amanda: Interesting, because you have this whole, almost like an autistic idol in South Korea, and you have celebrities who have these huge fan bases, like your partner, wouldn’t that just make them even more popular, because that would make them more relatable, or am I completely misunderstanding this?

Anna: No, you’re totally right, it’s kind of funny because a lot of the people that I know that are his fans, they don’t understand him because they don’t show him as autistic. They just think, “Oh, he’s just being funny,” or whatever. They even put subs on his vlogs and the people who are in his company will say, oh, he’s just funny or he has a very interesting way of wording things. And I’m like, dude, just say what he is and why he’s doing this. This is what his brain’s doing. And I’m not trying to say he’s autistic or whatever, cause they need to speak that, but I’m trying to explain this because these people have no clue. They don’t understand because they think he’s just being a funny idol, or he’s different in this silly way or his brain works differently. But we’re all human here, and you’re not getting the gist that he might have a disability and they don’t want to say that. There’s been a trend this year where I see famous new bands coming in and there’s an autistic person and he’ll walk down the stairs or whatever and there’s loud screams and you can tell he’s in pain or something and I’m like “Geez, they could have done something to help.” But this is how the culture works, you help yourself that’s what it is. My partner was saying, I want to make this concept for my next album, and they’re like, “We don’t understand that.” But hey, this is how things work, this is how people’s brains work, everyone is different. Luckily this last year, we’ve been starting to see a movement in Korea where we’re trying to get people to speak about disabilities more. We just got our first ever disabled music group, and they are hard of hearing and they got a good turnout. A lot of it gravitates towards people with disability. So it’s kind of weird when people understand that how in society, when they put a disabled person to be a broadcaster for the paralympics, but we won’t have that for the weather or a news channel.

Amanda: So I don’t understand this about South Korea, what is the point of even having shows like Good Doctor if they’re not going to publicly accept autism or disability? And on that note, are there other shows like Good Doctor in South Korea that kind of put autistic people up on a pedestal? 

Anna: Extraordinary Attorney Woo was a popular show because it talked about people’s disability, how the chemistry in their brain kind of works, how they can move around in society. But the funny part is when the producer comes out and he comes out with the actual girl that he was portraying that show on, the person very much has Down Syndrome. There’s a very common OCD disorder in that show too. So it’s not about one disability, but they have portrayed it as autistic only. Which kind of sucks because it’s not about that in the first place. And why are they putting this out? A lot of it is for views, and a lot of it is because people in other countries watch this. A majority of Extraordinary Attorney Woo was on Netflix, the majority of Netflix is in America or in other countries. This is to make K-Pop look interesting to the public and everywhere. To understand that oh, yeah, this is what we want to condone and tell you about disability without saying this is not how it is in real life. They’re making a fairy tale. It’s a fairy tale for adults, and your inner kid, that is really just a story about how it should be, that’s when you start getting a little messy, and that’s what it’s about. It’s supposed to be entertainment. Another show that became really big it’s not just about autistic people, but anybody who are neurodivergent, anybody who has a mental disability or learning disability. It’s okay to not be okay. And that was about this nurse, getting into a relationship with a woman who’s bipolar and he has to help his brother, who is extremely autistic. Very much what we would think from, Extraordinary Attorney Woo or the Good Doctor, that kind of portrayal, and it talks about how he gets in a breakdown. It is actually more explaining people and disability and explaining there’s a problem. I think that’s really interesting, that one is very different than the other ones, because it does talk about how they are treating the people in this idea and what’s the difference about their disabilities as well? And it’s talking about how doctors and nurses are working with people with disabilities and how a lot of the shunning culture works. And I think that’s really interesting because if we put all three together, then you find the whole picture. Another one is Shining Inheritance, that’s another show. And there’s also moved to heaven, that’s another thing about autism. All these shows are what we’re seeing because they wanted to portray somebody who’s autistic or somebody who’s different, because they wanted to. They are fascinated into seeing other people with disability. In the old days in Europe, they would have all these disabled people and they would take them around on the first circuses. People would pay money just to see these disabled people cause they were different. And they wanted to see and they were, oh, that’s so wonderful. And that’s not wonderful. Those are humans. And some of their disabilities could have been treated if they got surgery or something. It’s still the same thing today. They think this is fun entertainment, we’re going to watch people who are disabled.��

Amanda: That is so interesting. It kind of blew my mind when you said that Good Doctor, the American version of Good Doctor was based on a Korean show, which is, Good Doctor in the same name. And when you said Extraordinary Attorney Woo, by any chance, is the Good Lawyer based on that show too? It was marketed as a spinoff of Good Doctor, and it was a female lawyer, and I just cringed so hard.

Anna: It’s about a lawyer and she goes through all this stuff and also this relationship with this man and how she’s not able to function in society. She doesn’t know how things work and so this man kind of takes her hand and helps guides her through society. Her friend is also autistic and she’s not the same as we would think from the good doctor or whatever. She has problems with sound and other things like that, but she can still function in society very well. She’s able to do a lot of the same things, but you know, she still has a disability, and so they can work together. There’s two autistic people working together. You see the two different sides of that, which you don’t see in a lot of these other shows. And maybe he got into it and then maybe that’s what he thought of attorney woo, because of that show. And then he saw that girl and then, you never know.��

How Autism is Communicated

Amanda: And it’s also interesting how you bring up that show being on Netflix, and how you brought K-Pop into that point, because, correct me if I’m wrong, but the whole point of this sounds like that South Korea kind of wants to make media that’s palatable to all audiences, correct? 

Anna: It is. And the funny part about that is Korea has a lot of interesting society loopholes where they like to be popular. They like to be out there. But they also have this thing of being the head and forefront of technology. So we copy them. We go around and try to be better than them, but we aren’t and then they’re always out there and they’re giving out and producing the hit tracks. But then there’s also the problem of they’re so out there sometimes people get mad to a point where they’re like, oh, we don’t want this. It’s becoming too Americanized or globalized and we want it more sectioned to who we are because a lot of what Korea has been through, they were colonialized [sic] multiple times. China, Japan, and then America did it too. They’re still people a little bit hesitant to be fully out there because they feel like they’re gonna change. Some people just don’t like change. But yes, Korea is known for being very globalized. A lot of K-Pop musicians, most of their fan bases are from outside of the country and it’s very rare to find them that are just inside the country. Nowadays K-Pop is becoming more than just K-Pop. They can’t even call it K-Pop anymore because it’s global pop or whatever, because one of the K-Pop agencies made a Japanese girl group. They’ve made American girl groups. So they have made many different types that are not from Korea. And it’s becoming this thing that whatever’s the trend, they’re going to take it. Whatever is out there, what’s ever new, whatever is going to make some money they’re going to take it. They’re going to make it wherever they can take energy and put it into that and make a profit. They’re going to do it. And Korea is really interesting in that way because in America, we don’t have monopolies anymore, but Korea does and that’s what they get a lot of their cash from. A lot of the monopolies, one of them is Lotte. They have Lotte World Mall. They have taken over E Mart. So, Lotte is a big one, and there was a fight over this because one of the bands, one of the musicians technically, their family owns Lotte. And it was, oh, now they’re trying to get into this. This is a big thing, because to them, money is profit. Money made them go from where they were in world war two, where they were destroyed, to being a bustling community. But the problem is they don’t want to have weakness. That’s when it becomes really scary because weakness makes a man, it makes a person, it makes who we are. ‘Cause we are weak. There’s always going to be problems. Then if you don’t think that disability is okay, then, you’re lying to yourself because you have a culture where you have the best doctors, nurses, lawyers, some of the best in technology and you’re using it for the people that are able minded, able bodied, non neurodivergent. You’re putting all that energy to people who are, what you want is perfect, when perfect is not perfect in the first place. Where do we get all this stuff? It’s like any other country to America, they would say, oh, this is going to be a wonderful place. But the Americans be like, no, this isn’t that wonderful. And then they look at us like, oh, that’s not that wonderful either. They come over here. It’s the same thing for Americans and people in society. They have an infatuation because of K-Pop, K-Dramas that this is how society is going to work. And then they go to Korea and they realize that is not society at all. That’s not how this works. It’s not perfect. They wanted to portray something that is not what it is, and they want to make a profit from lying to people that their world is perfect. And to the point, they actually have a lot to say. Big businesses or companies, you can’t slander them. If you’re from a different country or if you’re out of the country, you can talk about people. But if they’re a big business, a big company, you can’t slander them. You can’t do that.��

Amanda: So, in this conversation, I know you mentioned one of the big companies. Is this considered slander, in the general sense that we’re talking about them, or is it slander because it’s technically a negative tone or context? What counts as slander in such a strict media culture like South Korea?

Anna: It could be anything. It could have been, their attitude was really bad, you know the other day and they act so posh, and whatever. Yeah, you can’t say that about the person you can’t go around and be verbally abusive to an entity in a community, in certain places that would be like, giving harm to a person or a business like suing them, verbally abusing them in different contexts. If it’s like a person there’s more lenience to it, but if it’s a whole entity, you can’t do that. Honestly, you can try to say, I’m gonna take you to court but because that person is so high up, they’ll just silence you. You can say certain things about people that are the same standing as you or less. But if they’re rich people, idols or whatever, you’re doomed.

Bullying and Other Responses

Amanda: I haven’t watched a lot of K-Dramas, but the ones I have watched, there’s actually a really big commonality I’ve noticed with bullying. And that’s the fact that the school takes it very offensively if bullying is reported against top performing students and it’s only really taken seriously until a video of the bullying inevitably leaks out.��

Anna: This will sum it up: the government has to put out a thing saying, just put your hand up and say, stop bullying. Yeah, the thing is, there’s so much bullying going on that it’s very suicidal. They will not do anything. They don’t know how to handle bullying in the first place. Like America, we have bullying prevention talks, it doesn’t work but it’s actually better than what they do. They don’t even talk about it. Honestly, you can get really bad nasty bullies, to the point to make you feel like you’re going to commit suicide. So now Korea is saying, we don’t want anybody who has a bullying record to get a job. So if you bully anyone now, you can’t get a job in Korea. And it became a big thing because a lot of K-Pop musicians were being accused from [sic] being bullied or bullies and then they shunned them. And that’s where this shunned culture gets worse because it could be a false accusation. And because the company doesn’t want to do anything. They’ll say, we’re just gonna end your contract here and you won’t be anything and they shunned them. There’s been a trend over this, about sexual assault, bullying, where people are trying to get money from this, idea, that we can give whatever slander we want, and then it becomes easy bucks. And that’s why this idea really came across where they said, you can’t slander anybody like this. It’s because there’s been destroyed people. There was this older gentleman, he was an actor and a couple of ladies said some false accusations. He was married and, they wanted to say some false accusations about him sexually assaulting them and he committed suicide. And after he committed suicide, they took those two ladies to court. And that’s why they have this problem with it and bullying is just something that is really hounded. It’s been a thing for a while and they just never done anything and then they thought, oh yeah, bullying is going to stop if we tell them they can’t get a job or whatever. It’s not going to fix anything because most of those people wouldn’t even got a job because the job market is pretty bad because the population is declining because people with disabilities and other people are just not producing children anymore because nobody wants to be associated with men or women who have problems in any form. A lot of it is because they don’t know how to take care of things. They want to shun people. They want to find a way to stop things like what was happening with these actors or other people when they were false accusations. But really what they did was hindered that because they took away their freedom of speech, freedom of rights because they didn’t know how to handle that. They took the extreme to make the extreme go away. Why would you do that in the first place? But that’s how they do it. I think a lot of the people in their Congress and in the blue house, that’s what it is. So we have the white house in the United States and Korea, they have the blue house. I think a lot of them are disabled because how they’re talking, how they’re acting, very typical for people with disabilities in their hunches, and come off a little bit harsher than they should have been. And they can’t vent who they are, or they can’t make good ideas come out of it. When we start thinking everyone needs to be perfect, and they’re not perfect. And they have so many people hiding their disability, that they’re scared, to even talk about it. But then, they don’t know how to vent their thoughts or vent their anger or to help themselves in the long run which will hinder themselves and hurt the whole community, in the whole country. And something America has worked on, we’ve worked on advocacy. We’ve worked on trying to help in certain ways and we’ve tried to keep somewhat a freedom of speech and know how to make policies that are able to not hinder people of all races or ethnicities but also to make things that are equally safe. Korea right now, doesn’t have the same steps. They’re a small republic, they got their ideas from us, but they don’t have the same backing, the same knowledge, the same understanding. They don’t have that system of how to put things in steps. So it becomes problematic, because now you have a disabled person coming in, typing up something and they don’t understand these concepts and then it becomes a problem. It makes the whole country go down because we have no advocacy for people. We have no understanding of what people need or what we need to help them with. And we don’t give rights to people who are disabled. We don’t see them as humans. We try to deny them anything. And I think, the United States have [sic] done this and is still doing this, but a lot of it for us is we have been working really hard and the people themselves have spoken, we have some freedom of speech and Korea is now starting to become that. A lot of them were very conservative, kind of quiet. Protests were very vague, very scary thing. But, the newer generation is now speaking up about these things. And I applaud them, they are speaking up on political issues and situations like that. And the only thing is they’re president right now is not the greatest. But they’re trying to get to a place where they can speak and be who they are and I’m glad they’re doing that. I think that if you want to make a community and you want to make a country be a country and function, you need to speak, you need the people’s speech to come out, for a lot of the people that are hurting, they need also opportunities. So if K-Pop did actually have more people who were disabled and they were actually speaking about it and they actually started talking about their disability and doing some advocacy work, that would really help. But the lot of them don’t know how to do that because Korea wasn’t built on advocacy. It was never built in the idea of that like America has, where we can advocate for ourselves. They have been very reliant on help by others. So, when they started becoming independent, they didn’t have the same tools as we had. So, if we get somebody like me to come over, who’s more abrupt, sometimes that’s a good thing because then if they start advocating for disability, more people might rile around that and might actually get to a point where bills can be made, things could change, where we can see a trend in the community for better. And that’s what I really want to do, because I see there is that place where there’s a lot of people that want that now, but they don’t have a way to get there. And if we can give them a door, they can choose to open that door. That’s the most important thing right now and that’s really what I want to do. That’s what is important for the disability community.

Anna and her Partner’s Challenges

Amanda: With Korea’s current culture around autism and disability, what are some of the challenges you and your partner anticipate?

Anna: Ooh, big challenges. First off, you need to think of where you’re going to build and what community and aspects you are trying to achieve. Secondly, we have to think about: what is the people [sic] we want to bring in? So a lot of the issues with the entertainment community itself, you need good people to come in and work with you, and you need to be someone who is able to help and doesn’t hinder and you need to be able to help around and work around business. You need to think about, who are you giving out to? Globally and in the community and what kind of music you wanna portray, what kind of people you want. So for us, we’re not trying to get really young kids in the door. We want some of the older people that might’ve been persecuted before, like people who are disabled or whatever. For us getting out there is the biggest problem, we need to figure out, how we’re going to go around with social media and what music, mic choices we’re going to use. What kind of recording studios we’re going to have, how we’re going to build this whole thing, you know? When we get to that, where are we going to take it from there? What is our global appeal going to be? What is our idea of music and how do we want to portray it?

Amanda: Can I give my two cents on that?

Anna: Yeah.

Amanda: I think you and your partner have a pretty big advantage there because, correct me if I’m wrong, a lot of musicians in the entertainment industry as well as actors and other idols are neurodivergent themselves just because the rigid structure tends to actually work with their disability a little bit. If they have an environment where they can be open with their disability or they were rejected from their company because of that, I feel like you get a lot of people signed up with you pretty quickly. Because he’s an established celebrity in South Korea, he already has a fan base and he’ll also have other celebrity friends he can bring to the table, but maybe that’s a little too presumptuous on my part.

Anna: Actually, his friend from when he was in high school, he’s a recording artist, so he has his own recording studio, and he’s worked with him many times. So we have people around. We have people lined up and I also think that there’s gonna be a lot of people because he was a gen 3 idol so people know him. They respect him. He’s worked with a lot of other idols because he was on a tv show, and he was doing music and dance with other idols. He was the person in charge of that. So they know about him. They’re like, “Hey, yeah, we would love to make music with you.” I think also if we get into not just in the music industry of K-Pop music, but we also get in Korean traditional music. Because a lot of the older generation likes that and if we can bring that back, cause it’s crazy beautiful. We just don’t have a lot of places and sources for that. If we can work with people, who are maybe doing opera or maybe acting on stage like musicals. If we can work with that, that’s always great. We always have some K-Pop musicians do that sometimes if they’re not mainstream. So if we can get into all different types and work around with that, that’s always cool. I think that’s what we’re kind of going to achieve with that. With our, agency, we’re not just going to be doing one thing, and there’s going to be more people that will look at us like, hey, we really like how, you’re working on this, how you’re not so controlling because another thing in Korea, slavery. It’s pretty much slavery, K-Pop.��

Harm in the K-Pop Industry

Amanda: There was an article or a few YouTube videos a while back discussing the K-Pop industry and just how the idols were basically treated like slaves. So please go ahead and discuss that. I don’t think the audience really knows just how bad it is.��

Anna: So in Korea, what happens first: you say “Hey, I want to become a K-Pop idol.” So you sign on for a contract with a recording entertainment center and they’ll either accept you from the application or not. And when they accept you from the application, you go through a trial period from singing, dancing, acting, and if you get accepted from that, you get to go into a training mode. This training mode can be from five years to seven years, or it could be up to 10. Honestly, you might never get to debut. But when you debut, the proceeds from your first album are all paid by the entertainment center. But what happens is it becomes collateral damage, meaning it is in the red zone. So when we think of money, if you do not make the amount from your albums that was from the first debut, you’re in the red and you’re in debt. So until you can pay off that, you don’t make any money. So a lot of K-Pop musicians will not make any money until they make up that debt. And that could be even from 10 years from now. It’s how much money they used, how they’re going to give that collateral damage, if they’re going to add on the next year and the year after that, and which kind of albums you’re making. And each entertainment center is different. Even afterwards , there’s some entertainment centers, they say, “Oh, you pay everything because we don’t have the money anymore,” and now you’re making so much money you can pay for it and then they’re like, “Great, that’s fine.” But they use you as a face, you are a face. You have to diet and be this perfect size. You have to act a certain way. You have to sing a certain way. And then what happens is a lot of the musicians nowadays — the younger ones — they don’t have vocal training the same way as they had in the old days. They were not talented the same way. We saw at Coachella this last year [sic]. People were commenting about it, hey, they’re out of tune, they don’t sing in the same way as we thought they were gonna be. A lot of that is because they love autotune, they love to do things, but they didn’t teach them very much. They teach them very little personal vocal training. And, if you’re an international idol, a lot of it will be Korean training. So how to speak in Korean, because I don’t want you to speak English, and there’s a lot of that. So you’re a face, you are a name, you are a part of a band and you more or less don’t make a lot of money, if at all. But if those people that are pretty rich, some of the people that are popular, like BTS for example, their agency is now only taking 1 percent of any money because they paid off all the debt. They have made more money than any company before them because of BTS and how much the sales are coming in, and they paid off all the debt from every album they made. So they don’t have to worry about it. Now they have so much money, but a lot of companies, a lot of times they will never make the money back. And so that means like, 17. That’s another famous group. They don’t get paid much, to zilch because they don’t make enough money back from that. And a lot of it, you are known as a money value and a face not as a human that is trying to make music and it’s really hard and it can be very annoying.��

Amanda: I’m hoping you and your partner, can change that because it sounds like South Korea could really use it. I know we’re about out of time, but one question I want to ask you is do you think your dream with your partner is possible right now because of a shift in culture in South Korea? 

Anna: I think it’s more actually because of him. Honestly a lot of it is because has taken the catalyst and said, hey, you have a dream, I want that dream to come to fruition. I know where my emotions are. I know yours. I’ve seen the agencies. I’ve seen the place and I know what you’re trying to get to. And a lot of it also is because the society is changing somewhat, but a lot of it is just because we have taken a stand to make change and we started not being in the box. So that means that they don’t know how to handle us, so we can stand up and be something different. We can do something. He had power because he worked through this and when he got to the perfect part, he was able to stand. And when you’re able to stand and do what you want to, your dreams can be achievable. And that’s what happened. So when didn’t freak out being the perfect K-Pop idol and was able to be who he was and he started chasing those dreams and saying, hey, I’m going to make your dreams reality because these are getting good. We worked together and we found out each of us canceled out each other. And our disabilities didn’t matter and it was just, we could work. That’s where this can be achievable, is because we know and we trust and we can understand that. This is where we are and we can keep working and we’ve been through so much and we can keep climbing. So it’s not just the idea of where we are now, but it was because they are allowing more idols of the different cultures coming in, so yeah.

Ending Statements and Anna’s Future

Amanda: Thank you so much, Anna. Before we go, do you have a name for your entertainment company that you’d like to share to the audience?

Anna: We haven’t really got all of that situated. I think it’s going to be Moon Entertainment cause we believe in the moon and everything and that’s kind of how we symbolize everything, but we’re still in the planning there. I believe that’s what we’re going to keep it as. So that’s going to be cool.

Amanda: Well, thank you so much today, Anna. Talking with you is always amazing. I hope to have you for another podcast coming up in the future and please let any of your friends or family know who are neurodivergent that they’re always welcome on this podcast as well.

Anna: Thank you.

Amanda: Thank you for listening to today’s Let’s Talk Autism episode. I learned so much from Anna, and I’m excited for her upcoming entertainment company she is founding with her partner. Anna’s passion stems from a place of strength and love as she and her partner continue to support each other in a challenging industry and in a culture that largely excludes them. The most interesting piece for me was the dichotomy South Korea seems to have with autism, citing shows like Good Doctor and Extraordinary Attorney Woo. Both feature the caricature savant autism type, which is often used as a plot device and to make their media more palatable to international audiences. The entertainment company Anna and her partner are starting will hopefully provide a more inclusive space for disabled idols and actors and inspire further conversation about disability as a whole in South Korea. Thank you for listening and please tune in for the next episode.

Outro

Kylo: Thank you for listening to Let’s Talk!–����ֱ��’s broadcast about disability culture. Find more information and resources concerning this episode and others at . This episode was produced by the Let’s Talk! Podcast Collective as a collaborative effort between students, the Accessible Education and Disability Resources Department, and the PCC Multimedia Department. We air new episodes on our home website, our Spotify channel, X-Ray 91.1 FM and 107.1 FM, and KBOO Radio 90.7 FM.

Episode Transcript

Transcript edited by Nikhil Raj Mehrotra

Introduction to Let’s Talk

Kylo: You’re listening to Let’s Talk! Let’s Talk is a digital space for students ����ֱ�� experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the opinions or positions of ����ֱ��, PCC Foundation, or our community partners. We broadcast on our home website, , on Spotify, on X Ray 91.1 FM and 107.1 FM, and KBOO Community Radio 90.7 FM.

Meet the Hosts: Amanda and Martha

Amanda: Hello and thank you for listening to today’s Let’s Talk: Autism podcast. I am Amanda, the facilitator, host, and producer of this series. Today, we are exploring autism diagnosis at different life stages. I was joined today by part time PCC instructor, Martha Bailey who was diagnosed at age 65 while I was diagnosed at age 31. We received our diagnoses in the last few years and we discussed similarities and differences of the social attitudes surrounding autism between our generations. Particularly, the stigma and stereotypes surrounding autism in women and people raised as women were widely the same, but the diagnostic scope slowly expanded as time went on. Notably, the recognition in women, people raised as women, and people of color are now acknowledged in autism assessments. This conversation explored how these stigmas impacted our childhood and the frustration we feel in that the autistic perspective is not accounted for in researching this condition.

Amanda: So thank you for joining me today, Martha. I hope we have a good conversation.

Martha: Thank you.

Personal Autism Diagnosis Stories

Amanda: All right, so to start off with, let’s start with our names, our pronouns, our major slash occupation, whether or not we have autism, ADHD, or both, and what age we were diagnosed.

Martha: Okay. Do you want me to go first?

Amanda: I can go first or you can go first, whichever you prefer.

Martha: It doesn’t matter.

Amanda: Usually I have participants go first and then I go just because I’m kind of meant to be the facilitator.

Martha: Okay, I can go. Hi, I’m Martha Bailey. you can refer to me with she or they pronouns. I am currently a community college instructor part time at two community colleges. My current teaching is in philosophy and religious studies, but my bachelor of science and my first graduate work was in geophysics. I have a confirmed diagnosis of autism. I have had it suggested that I should be checked for ADHD, but don’t have a firm diagnosis for that. And I was 65 when I received my autism diagnosis.

Amanda: Thank you. So my name is Amanda. I use she, her pronouns. I am currently completing an animal science degree at Oregon State with a pre vet option and then applying to vet school in the 2024 to 2025 application cycle. I have a confirmed autism diagnosis and I was diagnosed at the age of 31.��

Navigating Life with Autism

Amanda: So in our diagnostic journeys, can you please describe it? Was it something you sought out yourself, or was it suggested by a friend, family member, or other person close to you? Were you happy with your diagnosis, or were you reluctant to accept it? Why?

Martha: So, I was the person who sought the diagnosis and it came out of, having a family member who had some other diagnoses and had it suggested that he should be checked for ADHD. And so I was involved in that. process. And while working through his ADHD diagnosis, I started doing some reading, and was seeing some popular magazine articles about older women being diagnosed with autism. When I read those, I very much connected with them. So that led me to find a person who could do the diagnosis. And this was happening while we were still in the pandemic sort of situation. So it got a little more complicated. It took longer, but I sought it privately because I wanted to have control over who was doing the diagnosis and what was happening and not to have it. Controlled by insurance or anything like that. So I was actually very happy to get the diagnosis because in the time since I got it, it has helped me make sense of myself. And it’s helped me start to work on answers to questions that I’ve had as a professional, things that have happened to me as an instructor, where when I reached out for help to other academic people, nobody could answer my questions. Nobody could see what was going on. And having my diagnosis has really started to make sense of things and giving me Better clues for how to deal with situations that I was stymied by and seemingly anyone I asked was also stymied. They couldn’t pinpoint what was going on.

Amanda: Thank you. So for me, it’s actually kind of a similar situation a little bit. So I was not diagnosed until I was 31. My mom did try to take me to experts when I was very young because she knew when I was very little that I was very different, because I was so high functioning though and at the time that it was thought that autism and ADHD just didn’t happen in girls unless it was like super severe. So I think the experts probably agreed that I was different, but they just didn’t want to give my mom the diagnosis. And they just told my mom that I would grow out of it. And that is really what they said, that I would just grow out of it. And that’s like, that is just such a damaging thing to say to a parent who has a child with autism or ADHD, because obviously we don’t, and that just puts it on the parents to essentially try to make us normal, which my mom tried, but just kind of Failed because I was just always really stubborn and kind of just want to do my own thing all the time, as you can tell by our previous conversation, so autism was first suggested to me though, by my mother in law and I was dating my wife at the time, but she saw all the autistic tendencies in me, because she had relatives who were autistic. So it actually ran in her family. And She was the one who first suggested it. But I didn’t seek a diagnosis until it was recommended by my current therapist when my mental health was just taking a nosedive a bit because I was so stressed academically. And my wife was pretty worried about me, and I had suspected I probably had something going on with me for a while. And when I met the psychologist, she did have me go through the standard three appointments after filling up the RADS questions, but she said that she knew I was autistic when she met me the first time, but the standard is three appointments. And in terms of my reaction to it, I was really relieved and happy because it just gave me so much closure, it explained so much about me, and it kind of made me feel not crazy, my concerns, my pain, my frustration with the world around me was valid, and that was because stimuli was just so different for me compared to other people.

Impact of Diagnosis on Personal and Professional Life

Amanda: Like, when you were diagnosed, would you say you were happy, or were you kind of sad, or how did you feel about it with yourself, Martha?

Martha: I was very happy because at least when you were a child autism was maybe a possible diagnosis. When I was young it was autism was very, very restricted to, particular, I don’t even think they diagnosed it in females. They diagnosed it in males occasionally, and that would be people with certain extreme versions of it, where they were very low functioning and, uh, in terms of being able to handle school. It was the big, the big thing was, can you do standard schooling or not? That was kind of where they were at on, If you had autism or not. and it was so it was a very narrowly defined diagnosis, and there wasn’t this view that it could encompass people who expressed it in many ways, and people who could go to school and be in a standard classroom. And yeah, I was always different and didn’t connect and things, but, because I behaved or was able to behave in the way that people wanted me to behave, they just sort of ignored and let me figure out how to deal with everything. And so. That’s what you did all of life. And well, there were times where I didn’t realize this was getting in the way, but it became evident, as I was teaching that there was something going on that was getting in the way. And. has had a negative impact on my career. So for me, it was good to finally be able to explain what was going on. I’m still working through how to deal with it, but the fact that there’s something to deal with now, whereas when I was young, that wasn’t even an option is really positive.��

Amanda: Yeah, I kind of get the whole, just kind of accept, just taking life as it was, and just kind of trying to survive, that definitely was me too, especially during my first round at Oregon State when I earned my initial bachelor degree, which I didn’t even want because my mental health was just so bad. So yeah, I definitely do relate to that. And again, I’m able to advocate for myself now just with that official diagnosis as well. And I also feel like I just was so happy. I just really can’t tell you how complete and just how, I felt like I actually had an identity at that point. Like I would say that my autism is probably the part of my identity I talk the most about. It’s not like that’s obviously not all I am, but I definitely felt like I really can’t really describe it other than saying it made me feel complete. So in the next question, how would you say your life has changed after your diagnosis? Would you say your life has improved or not ?

Martha: I would say that it — not everything’s gotten perfect at this point, but it’s definitely better. I had a situation at work that didn’t go well, and basically was on the edge of a meltdown but I was also able to identify What happened, why it happened, and knowing that being able to use it was able to work through the situation with a positive outcome. And When I express a certain need, having people know that I have autism and so that that’s going to impact what I need. I found people willing to work with me. I’m sure there’s probably some people I’ll run up against who aren’t willing to work with me, but overall I’m able to say, look, I have a legitimate concern here. This isn’t just me being stubborn or something, even though it might be me being stubborn, but there’s something behind it. and, so that part’s good. Part I’m struggling with right now is that I really think I would benefit from having some kind of a therapist. And, I’m trying to work with the company that my insurance will pay for and we haven’t gotten very far with that. I have another phone appointment with somebody to try to help me find a therapist, but the way they have things set up isn’t working for me very well. So it isn’t that everything’s perfect, but it’s definitely a plus to be able to say, This is my issue. This is what I need help with.

Amanda: Yeah, I definitely get that too, especially, like, I would say my life has improved dramatically, definitely with my own family because, my mom and my sister, we all love each other, and it’s like we try our best to support each other, but because I’m autistic and my mom and my sister aren’t, there were a lot of times where I would freak out and they would just have no idea why, and my mom, again, it would cause a lot of issues with me and my mom sometimes just because I was overstimulated and she thought the best way to help me was to try to kind of make me tough it out, essentially, especially with family events like family events were really hard for me because what would happen is I’d be left out of conversations with my cousins who are similar age with me. My sister six years younger than me and she had her own group of cousins that were her age she played with, and the adults, it’s like I didn’t really know them like I saw these people maybe once or twice a year at best. Or, I guess I saw them a little more frequently than that when I was younger, but even then I didn’t see them enough to establish a relationship with them, so it’s like, I would be bored. I wouldn’t feel sad or lonely, I would just be bored out of my mind, so I’d be drastically understimulated and I would just want to be by myself and my mom would just get really angry because she would be like, why do you want to be alone? Why are you so weird? So that diagnosis really gave my family and I closure and we’ve grown a lot closer and I feel like we understand each other better. So to me, that really sucks because I feel like if I had been diagnosed at a younger age, my mom and I and my sister and I really could have had an easier time with that. Or maybe not, I don’t know who’s to say. I’m not really going to cry over spilled milk like that. But in terms of other situations, I would say, again, it definitely allows me to advocate for myself better in work situations. And it also allows me to advocate for myself in academic situations a lot better. Like, there have been times where, not in academic situations, but there are people who are trying, to me, who are trying to bully me, they would just suddenly stop when I would say I’m autistic, and then they would send me, like, an unrelated article about a famous autistic person, which for some reason, like, is supposed to smooth things over, I never really got that, like, you were like a total jerk to me. You’re trying to say things that I didn’t do and when I called you out on it, your response is to send me an article about a stranger I’ve never going to meet and has nothing to do with me. No you have to apologize to me now, I will apologize for my behavior if I’m accountable for something, but that does not mean you’re off the hook and that’s another major difference I’ve found. After I was diagnosed, all of a sudden, everything is no longer my fault. I am half responsible in the situation, certainly, but it’s no longer all my fault. And there is, like, something to that. Where it’s like, I was raised where everything was my fault because I was just oversensitive. I was too dramatic. I was too emotional. Or I wasn’t emotional enough. Or I wasn’t close enough to family members or something like that. Or I didn’t care enough about family or friends or having friends or something after I got that diagnosis, looking back on those memories. It’s now no longer all my fault. Like, does that make sense?

Martha: That completely makes sense. I love when you were talking about your family relationships because, yeah, extended family, there are places where it would have been so nice to have had a diagnosis much earlier so that I wasn’t just the antisocial one who got overwhelmed when there were too many people doing too many things. But, yeah, being able to ask people to take into consideration that not everybody sees the world the way they do is a nice thing to be able to do.

Amanda: Yeah, and it’s just about – I also – I don’t really think it’s about that. And to me, it’s like just about not having a scapegoat anymore and just being forced to have accountability on both sides. Because once you say you’re autistic, there is some power to that, where it’s like, okay, you – there is like, genuine reason why they react this way, and there is like a genuine reason why they are upset. So how is it now, how did I contribute to that? It does kind of force responsibility to both sides equally.

Martha: Yeah.

Amanda: At least that’s what I found, like it’s very interesting, like the shift.

Martha: Right. So one of the things that is connected for me is connected to autism is sensory sensitivities, and I am. extremely sensitive to smell. So odors, um, can really have a bad impact. And being able – so I have a place where I’m teaching in person. My classroom has a sign on it that says “this is a fragrance free classroom.” And my office has a sign on it that says, “this is a fragrance free office.” and so I can also ask cleaning staff not to use strongly scented cleaning products. I can ask students not to, you know, have things that have strong odors with them. And so, having that ability to be able to use that and say, this is overwhelming to me this is too much. and even when students are working on things. Being able to just say, or other people just being able to ask for things and not feeling like I’m somehow putting everybody else out by asking for something that will help me is a really big shift.

Amanda: Yeah, totally.��

Social Attitudes and Misconceptions

Amanda: So for number four: How would you describe the social attitudes of autism at the time you were diagnosed? How would you say these attitudes affected you in your diagnostic journey? And I think we talked about that a little bit, but there’s like any further thoughts you’ve had about that, feel free to expand on them.

Martha: So as I mentioned, in the last couple of years, there have been a lot more stories in popular media about women in particular who are middle aged or older, maybe even younger than middle aged, but definitely fully adult women who have been diagnosed with autism. Sometimes it’s because they had a child who was diagnosed with autism, and then they recognized it in themselves. Sometimes it was something else that triggered them seeking a diagnosis. But that has made it more accepted, more socially acceptable to say that you have it. Because, again, people in my age group, when we were growing up, you would never have seen a girl being labeled as autistic because it was so strongly tied with only male identity, and so it wasn’t even an option and so that’s had a big positive impact. Although I will also say that there are people to whom I’ve expressed, oh, I just got diagnosed with having autism and they were like, clueless and didn’t seem interested in understanding what that meant or why that was important. And in fact continued to respond to me like I was the one Continuing to do things that just weren’t acceptable. So there’s a very strong still sort of ableist reaction or rejection of What a diagnosis means. Sorry, I got lost my thought there. and so I would say, overall, in this time frame, it’s more accepted, still not fully accepted. And, there was something else I was thinking of, but I have lost that thought. So I’ll stop. And if it comes back, I’ll let you know.

Amanda: Well, it’s kind of like I said, when I was diagnosed, like I was supposed to be diagnosed in the nineties, but again, at the time, autism was a little more accepted to happen in girls, but it really was primarily young white boys, specifically where it was the most commonly diagnosed and really just recognized in general. And the first time I was assessed, quote unquote, was by someone hired by the Beaverton school district. And I have no idea what this guy’s credentials were or what his job title even was, but apparently he assessed me with whatever assessment he used. And he told my parents that I would never learn to read. And I had to have been like four or five because this was a little before kindergarten. My mom did not accept that and did not trust me. Ever since school discorrect with my assessments ever again. And I am very grateful about that. Cause she was spot on there, but it’s like – so other experts told her I would learn to read, but they just still didn’t give her the diagnosis because it’s like, I was still too high functioning at the time. So, as I talk to people who were diagnosed a little younger in life, it is interesting just the age gap I have with them because it’s really not that much, like there’s this one girl on a podcast I talked to who was diagnosed with ADHD when she was 8 and she’s in her mid 20s. late twenties, actually. So she was really only like five years younger than me. So the difference in social attitudes is honestly pretty phenomenal in terms of the short time span. So I’m not saying this is the case overall, but it’s like, again, younger people who are like in their early twenties and even late teens, because, you know, college, university age, that’s just typically when you start. That it is interesting that they are usually diagnosed younger at that point. And usually it is like in elementary school earlier late. So I do think the attitudes have changed and at least with the social attitudes that impacted me with my diagnostic journey that definitely is reflective in that and just how, I don’t know, it’s like at first it was slow and it feels like it got really progressive but there’s still, I do agree with you, there’s still like the social rejection of what a diagnosis is and what it looks like, because with, media representation of autism and ADHD, a really huge issue with that is only one type is representative. It’s often misrepresented because it’s very inaccurate. So again, that’s my two cents on it. I was probably all over the place, but yeah.

Martha: Well, I want to jump in on that thing about the media representation, because one person who, when I said – oh, by the way, and this was before I had my official diagnosis – but I mentioned I’m being assessed for autism and, their response was, oh, does that mean you’ll stop working? And I was like, How would getting a diagnosis at my age have anything to do with, I’ve been working, so why would I suddenly need to stop working? I mean, that was just like such a bizarre reaction, and I’m wondering maybe if it was because in this person’s mind, autism is associated with those media representations and failing to recognize that it wasn’t something that necessarily advanced across time, like it got worse or something. It’s just something that is part of who you are and how you approach the world.

Amanda: Yeah, for sure.��

Advocacy and Communication Challenges

Amanda: And I know I kind of answered this earlier with my own situation, but for number five: Did the social attitudes surrounding autism and ADHD at the time influence how your friends, family, colleagues, and work superiors treated you? How would you say your condition affects your relationships now? And again, I know I kind of answered for mine already with this, but I probably will expand on it a little more if I think of something, but I’ll just let you expand on it if you can think of anything else.

Martha: Yeah, so I would go back to before I was diagnosed, there has all across my entire life been this very strong social attitude about how women are supposed to be and particularly I identify as a white woman. And so there is this, how white women are supposed to be and this is how you should behave. And so I was doing my best. To do what is referred to as masking. So pretending that I was just like everybody else, so doing outwardly the things that were expected of me most of the time, even when those things felt very uncomfortable, and they were literally exhausting at times to try to meet the expectations. So I would go out into the world, be in a social setting, do my best to be somewhat social, although I have never been the most social person. And depending on the day, I’m very not a social person, but doing what I could and then coming home and just collapsing from exhaustion because of all of this stuff that was expected of me. So that would be, you know, because there wasn’t any way of stepping back. And what’s interesting is now I understand this, and I can explain it. And I also can take better care of myself by saying, no, I need to not engage. I need to step away. But, my grandmother, my father’s mother, and my father, both of whom are deceased, probably both also had autism, but would never have been diagnosed because of the time and place where they lived. And my grandmother in particular, all of her adult life had been married and it was my grandfather who basically took care of her in social settings until he died very suddenly and, shortly after he died, I was with my grandmother and some of her friends, and I overheard some of her friends just wondering how she was going to survive without him to help her handle the world. Well, some other family stepped in to help, and she was a widow for 19 years and did, I would say, just fine. Partly because some other people helped her and partly because she had by that point in her life developed enough ability to handle herself, but I would go. She lived in an apartment by herself. But near where my aunt lived and I would go and spend time with her on school breaks when I was in college and we would have whole days where she’d be in one room and I’d be in the other room and we’d both be doing our own thing very quietly and we didn’t do interaction and it was a perfect picture of two autistic people who were there but really were not doing anything direct because both of us just needed that. apart time.��

Amanda: Yeah, that’s kind of nice that you and your grandmother have that understanding because it’s like I, again, like going back to my childhood where it’s like I just needed breaks from social situations. It’s like my mom would have reaction and it’s like wasn’t just my mom, but other relatives kind of had this reaction to like my grandparents, her parents. I’m guessing some of the aunts and uncles probably said something to them too to that effect. That’s just how, my mom is very typical in social reactions and expectations, and I don’t mean that meanly, it’s just, again, at the time, another issue with kind of trying to turn an autistic kid normal is that it places this unrealistic expectation on the parent to train them to be normal, which leads, indeed, to the toxicity of ABA, but that’s a different talk, but, anyways, to that effect, I would say that it definitely did improve, and it’s like, improved the relationship, and my wife and I already kind of did that even before my diagnosis, because she’s also autistic, but even before my diagnosis, I just needed a lot of alone time, because I don’t know why, I just really do not have a large social battery, like, I can do short term interactions with people, as long as I’m stimulated enough, I can keep the interaction going. But the moment, the subject inverts, or like, for whatever reason, someone stops talking to me, I just get really bored and I kind of go space cadet, as I call it. Like, at work functions, for example, with my wife, it’s like, both of us would kind of struggle with that, because we were both so bored if people were not talking to us. Like, we don’t, like, for me, it’s never the exclusion aspect that bothers me, and whether people exclude me or not, I don’t really care about that. If I don’t have a reason to be there, why am I there? I don’t know. It’s kind of my attitude. It’s like, if no one is talking to me, why would I be there? And that’s kind of my, that was my issue with extended family too, where my mom and I would just have these huge fights where I just didn’t want to go because I knew I’d be bored out of my mind. And my mom is like, they love you, they miss you. And I’m like, they don’t even talk to me. They don’t even notice I’m there. It’s like, what are you talking about? I’m not an idiot. And that’s another thing I feel like, I think that’s just kind of apparent toward the kid attitude in general, where it’s like, parents kind of automatically assume their kid will believe them if they’re young enough, and I just was never, like, I was like that a little bit, but there was just, I wasn’t totally like that, like, I did notice how people treated me, and I wasn’t an idiot. I’m not saying the extended family hated me, but I don’t think they gave two rips if I was there or not. And so in terms of like work colleagues and, work superiors treating me in this job, it kind of varies. It really depends on the person, but I would say overall, it’s pretty positive. What I would say is if you are facing ableism in a job, you do have to make enough noise to get attention. And if there’s not a place for you at the table, make a plate, clear space for yourself. don’t be polite. Don’t wait for it. Just say, Hey, I’m sitting here. I’m involved in this discussion. Let’s talk. Then again, I’ve always been that personality.

Martha: You sound like you’re thinking of a specific kind of situation and I’m kind of curious what that is, where you would be in a work situation where your perspective or voice would be ignored.

Amanda: I can’t really comment too much on it on this podcast. I don’t really want to bring in work drama to this podcast. It just kind of something that happened recently. It’s more like what happened was, people were getting overwhelmed on both sides. miscommunication was happening left and right. So it’s more like feelings were getting hurt and not getting resolved and direct communication wasn’t being used, so I kind of just was like, okay, stop, let’s talk about this. So I can’t really comment on that too much, unfortunately, but it’s getting addressed. I wouldn’t say it’s totally resolved, but it is getting addressed. But it’s like, it doesn’t even have to be hostile, it just snowballs from miscommunications and like that. Because the problem with any advocacy position, whether you’re working in advocacy or not, there’s always this quote to keep in mind. The road to hell is paved with good intentions. Where someone thinks they’re helping you, but they’re not talking to you. so they might end up damaging you it’s not that they have bad intentions, but it does kind of come down to kind of communicating your needs

Martha: It’s like the statement, and I cannot think of the full one, but it’s no something without us, and I’ve forgotten how it goes, but basically the idea that if you’re doing something you don’t do it to people, you do it with people. And so all parties need to have their voices included. And yeah, sometimes when somebody thinks, Oh, this person has a problem or has expressed an issue, let’s figure it out for them. And that’s not really very helpful. And that’s, one of the things that frustrates me is when somebody is like, Oh, but we can solve this problem. I’m like, yeah, but you don’t really understand the problem from my perspective. You need to let me be the one who says what my issue is so that we can maybe work on it together, not you fixing it for me.

Amanda: A more benign example that I can talk about is actually at Oregon state and this is actually a different situation than what I mentioned to you before this podcast recording. So this was a while back when I was still kind of on good terms with DAS at Oregon State. Now it’s like, I’m on neutral. We’re just going to stop talking to each other when we don’t need each other kind of thing with DAS at Oregon State. But anyways, this was back When I was still talking to my DAS counselor, she mentioned that the business school at Oregon state was like doing this initiative to make the classroom learning more inclusive to autistic people. And she was like doing a lecture on it or like doing this slideshow presentation on it or whatever. And I was like, okay, that’s awesome. But instead of you doing the presentation, can you get like an autistic faculty member to do it? And she just looked at me like I slapped her. Like she was just shocked I suggested that. And I’m like, You do realize you’re not actually autistic, right? And here’s the thing about presentations like that. And again, it goes back to that road to hell is paved with good intentions kind of thing. Where I get that you think you’re doing a favor for autistic people by not, by not putting the pressure on them for doing the presentation, but you also inadvertently take away their voice. You inadvertently take away their chance to speak on matters that directly relate to them. And you’re, and the reality is you don’t live with autism every day. You don’t live with the struggles of it. And it’s true that every autistic person is different. Like you and I are obviously very different with what, with sensitivities we have. But we can still talk on autism, but we still understand each other’s struggles, we can still emphasize with each other, and we can still verbalize it in a way that makes it more real to people, because I also think there is a cognitive difference to where, like, if you’re talking on something like that, versus actually living it, I think there is a huge difference, like, I can give a talk on racism, and I can give all the statistics, I can give all the protests, I can give you all the historical examples in the world, but the reality is I’m a white woman and I don’t have to live with the consequences of racism. I don’t have to deal with the barriers. I don’t have to deal with the looks. I don’t have to deal with the constant fear of police. I just don’t live that. So it’s going to mean so much more coming from a person of color.

Martha: Yeah. And, I know there’s, this, kind of you’ve referenced it, but there’s this thing about, oh, we should do our own work around understanding, which is true, but I think it starts with, having legitimate. information from somebody who’s dealing with the situation.��

Understanding the Impact of Ableism

Martha: So, an autistic person can explain what the impact of ableism or misunderstanding of autism has on them in a way that somebody who’s looking from the outside is not going to fully understand or fully get your analogy with racism is the same way. I don’t know about autism. I know with racism, I can observe and express my dismay at seeing what is happening to my students when someone is acting in a racist way towards them. So that’s my experience. It’s not direct, but it’s indirect. And it’s impacting me because I’m seeing somebody being horribly racist towards my student and that’s creating problems for them. So, I’m trying to think. It probably could be the same with somebody observing a person who is being very ableist against someone with autism, and feeling like I want to do something because they shouldn’t be acting that way.

Amanda: For me, there’s a difference between, actively speaking on a subject like that versus facilitating it. Like, basically how I would treat that is, yes I can talk on it, but I’m not going to be the person who’s talking about the whole conversation. Like the main voice is going to be on the person who’s actually experiencing it.

Martha: That makes sense.��

Amanda: Like, to me, it’s about, providing support and facilitation rather than taking over the conversation is what I would say to that.

Martha: Right. And I agree. I think my point is just that sometimes, people act as if, oh, it’s only impacting the person who’s having the direct. impact. They obviously are getting the biggest impact, but it can have a secondary impact on other people who are trying to be allies and supports, and who sometimes can step in and maybe disrupt something if somebody’s just being really negative.��

Amanda: Again, it goes back to just being a facilitator and an ally and not taking away someone’s voice. Because to me, the slippery slope with that situation is you kind of have to balance between, talking with someone versus talking over them. And to me, that’s what I try not to do in situations like that. Like, just not talk over someone, not take away their experience, and not overwrite their experience.

Martha: Absolutely. Everybody’s experience is different. There may be similarities, but your experience isn’t my experience, and so we can’t generalize, experience. At least as we’re living the autism, we might be able to generalize sometimes the negative sides, because sometimes those, are more similar 

Amanda: Yeah, yeah.��

Social Attitudes Towards Autism and ADHD

Amanda: So for number six, how do you feel about the current social attitudes surrounding autism and ADHD? Do you think they have improved? Why or why not?

Martha: I kind of touched on this already. There is higher awareness. I think more people are aware of the newer definition of autism, but not everybody is. And, ADHD, it’s very, very mixed I see things where sometimes it seems like people have got It and other times where they’re still putting ADHD is what elementary school kids who won’t follow their teacher’s direction have like that’s the only place that it exists. What’s really interesting for me is it’s been, what, 30 years since I was in graduate school? And I had a really good friend in graduate school who had really, really severe ADHD. I can’t remember when he was diagnosed but it wasn’t when he was super young. And he used medication because he really needed it to focus. This person is a fantastic scholar, fantastic person, just all around great human being. But, very clearly if you were with him, it was like the ADHD was there. and he was accepted in the graduate school. He was accepted as an instructor because he was writing a PhD dissertation, finished his degree, got hired, really just fantastic. And I can think of a time where that just wouldn’t have been the way he was supported and encouraged. So that’s an improvement. But that said, while there’s greater awareness and greater acceptance, it’s not automatic. And the understanding isn’t always there. And not everybody, because of their particular life situation, Is in a place where they have support and understanding and if you’re not in that situation, I think there’s still a strong negative reaction against people who have autism or ADHD or both or something similar. And. there’s still too much of, oh, whatever you’ve got, you need to just take care of yourself. You need to figure it out for yourself. We don’t want to give you any support. We don’t want to give you anything that would help you in any way because it’s yours to deal with and nobody else needs to be bothered with it.

Amanda: Yeah, and I kind of agree with that. I definitely do think the attitudes around autism and ADHD have improved in the sense that the diagnostic scope has expanded. Like, obviously, people of color and women are now being diagnosed at an increasing rate. On the other hand, I do think that’s widely due to an increasing representation of autism and ADHD just making it more normalized. There is a downside to that, though. It is making mental health professionals take potential ADHD and autistic patients less seriously because if they see it on – it’s like, do you actually have these symptoms or do you just think you have these symptoms? Are you just trying to jump on a trend? Like I actually have talked to several professionals and universities and where they’re actually very hesitant to take students seriously because of that, which to me is really bad to me. It’s like it comes down to, okay, why are they identifying with the social media posts? It’s like, because there’s a very strong chance that they have stigmas in their house. There’s a good chance, especially if they’re female, that they just have never even heard of autism. Like, that really was my childhood for the longest time. There isn’t really a stigma in my family against autism, but until I met my mother in law I had never heard of autism so there might be elements of that. And again, it goes back to family stigmas where it either isn’t talked about or there’s like heavy prejudice against it. And another thing, with the media representation with autism and ADHD, it has good and bad things. What I would say about it is, it misrepresents both conditions very badly, because a lot of times it’s based on very superficial research and not actually talking to people with autism and ADHD, or like looking up organizations like Autism Space. Just very superficial research that ends up being more damaging to the wider population than anything else. So, I would say yes, it has improved in the sense that there’s a wider awareness of it, but to me, we still have a lot of work to do, and we have to be pretty cautious about how we treat these conditions still.

Martha: I think you’re right and I think that people who are able to access more resources, like engage with higher education, are more likely to have resources. People who find themselves with less resources available, I think also are the ones who are more likely to have negative stereotypes put upon them and, have, less, ability to deal with things.I mean it costs a lot just to get a diagnosis and even if you get a diagnosis, if you’re working for a manufacturing company, say as a, Person who’s working on the line versus, being a student in an institution of higher education where you can request accommodations. Those two situations could make the outcomes you get and the way you’re looked at be very different. And it’s concerning. I know that with people who are houseless, there are a number of different issues that have been identified. One that I haven’t seen discussed in anything I’ve looked at is, to what extent are people who are houseless, potentially have undiagnosed autism or ADHD. Where if that were dealt with, it might help them move into a different situation with regard to housing and other resources.

Amanda: Yeah, like to me, even getting the diagnostic journey, at least to me, the most challenging part about it is the cost, obviously. Like, even if you find providers under your insurance somehow, a lot of times the assessments themselves actually are extra. Like that to me, it’s just, it’s shitty, but it is what it is I’m trying to remember. I think the average autism diagnosis, I want to say it was like $3,000, but at least that’s how much mine was. And I think that was like the average price. and I think ADHD diagnoses are around the same price, if not a little higher, I remember, I think it was like more like $5,000 or $7,000 actually with ADHD, but it might be wrong about that.��

Misconceptions and Media Representation

Amanda: And so, going on to number seven, and I kind of think we kind of touched on this in number six anyways. What misconceptions about autism and ADHD still persist? What do you want to say to the audience to dispel them? And again, this kind of goes back to the media thing, but it also relates back to like old attitudes that were kind of in the early days of autism and ADHD research as well, because I do think those attitudes do still persist.

Martha: Absolutely, so one of the things that I did, oh gosh, it’s been like 20 years ago. Before it even occurred to me that there was a possibility that I could get diagnosed with autism and ADHD. I was sort of curious about them. So I was reading these books in an academic library that I don’t even know when they were written, that was talking about how autism and, and Asperger’s was the one, the language that they still had in those books, like how they were diagnosed and what they meant and everything. And, that attitude of, if you have one of these conditions, it means that you are incapable of doing anything normal, like you’re not going to grow up and be able to be a normal, responsible adult. You’re not going to be able to take care of yourself. You’re not going to be able to do a job, or if you are able to be employed, you’re going to be employed at a relatively low level kind of work where it’s very repetitive, or it’s something that is very standardized in some way and that, you’re going to need a lot of supports to stay focused on your job and to be able to complete it. And you’re not going to be able to ever have a relationship or a family or anything like that. so there’s that. There are also some people, at least in my generation, who are completely clueless. They’re like, “I don’t know what autism is. I’ve heard of ADHD. Isn’t that where you throw meds at kids?” And, you know, once you get the meds in them, then they’re fine and they grow out of it. That’s kind of  the attitudes that you get. And I would just say people need to learn about and access accurate information about what these conditions are, how they exist, that they are not something somebody is going to grow out of, although people may learn to handle them in different ways, and in some cases might use medication, but not necessarily. So it’s getting up to date information, which is true about a lot of things. There are a lot of diagnoses around tons of conditions where current information is very different from the past, but people are still dealing with whatever they were told when they were growing up, and they haven’t updated what they know, or what they think they know, you know, in 10 or 20 or 30 years, and so they just have outdated information, and so often hasn’t even dawned on them that there might be something more to know than what they’ve, said they already know.

Amanda: I definitely agree with all of what you said. So, to me, the biggest misconception about autism and ADHD that still persists is the fact that it’s still, both conditions are primarily associated with males, specifically white males. There is, again, the diagnostic scope is definitely expanding, but I definitely still see that. And there are even experts out there who still don’t acknowledge that autism happens in women. There are still people out there who refuse to acknowledge that. another thing about autism and ADHD that I find very interesting in terms of misconceptions that persist no matter where we are in the research conversation, is the fact that people really just associate it with children. It’s the fact that it’s associated with early childhood development and that it’s just barely even discussed in adults in university age or really even high school age. I think there’s very limited studies on this. And it’s like, even the diagnostic criteria to me is ridiculously difficult because they want people who knew you when you were three. And I’m like, this does not grow out of us. Like, we’re able to articulate our condition actually a lot better as we get older, but this condition does not stop or grow out of us just because we’re no longer three. Like, this is a lifelong condition, so quite frankly, it does not matter if you have people who knew us when we were three or not, Even if we didn’t meet developmental milestones, or even if we did, it doesn’t matter because autism and ADHD is going to affect everyone differently. You can’t even really rely on developmental milestones anyways. So I always found that particular thing honestly ridiculous and very inaccurate and, I just want to also say that there’s currently no research studies that have collected data observing the effects of neurodivergent university students receiving accommodations and how their academic performance improved. There’s literally no research out there at all. I have asked multiple professionals in mental health about this.

Martha: that’s really wild, that you haven’t, and so I’m gonna, backtrack, but yeah, on the developmental stuff. some of it’s physical, but a lot of it is intellectual. And if you happen to have a form of autism, where you’re not intellectually, disabled in some way, in terms of just basic ability, you’re going to look like you have, normal development, but It’s the other aspects that may or may not be caught by people because, especially as a girl, you learn to mask and it’s part of your being autistic is hiding what you don’t want somebody to know when you know it’s not approved of. I find it really interesting that there’s no research on accommodations for university students. I have a friend. Who is about your age, Amanda, I think, but, had been diagnosed being male, when I can’t remember how old he was, but fairly young, but when he tried to start community college, because he needed accommodations and the accommodation he needed was to use a laptop to take notes. this was probably what in around. 2010 ish, I’m not sure, I don’t remember the exact year, but approximately then, and at that point he had instructors who did not want him using a laptop in the classroom, and so they wouldn’t let him have the laptop to take notes, and so he failed classes and ended up dropping out of community college. He is now successfully employed and moving up the ladder at his job without a degree, because given the right supports, he’s completely capable, but failed community college because instructors refused to allow him to use the accommodations he had been granted, which is totally frustrating from my perspective.

Amanda: Now it is frustrating and that, terrible because it sounds like he’s a pretty smart person. But I also wanted just to make sure that to use exact language when referring to the studies. It’s the fact, the studies I’m talking about is that there’s no studies addressing the academic performance differences with neurodivergent students when they receive accommodations. I just kind of wanted to make sure people understood what I meant by that. I don’t know if there’s like accommodation studies out there period, but for the specifics of neurodivergent students. Not receiving accommodations or receiving accommodations. No studies have been conducted to observe academic performance there and I just, again, it’s like it goes back to the fact that developmentally people are children are so different. And I’m not an expert on childhood development and I don’t have children. So I’m not going to comment too heavily on this. But it’s like, I’ll give myself an example. My mom said I actually skipped crawling and just went to walking. Like, I’m not saying I’m a genius or anything, but it’s like, there are cases where you do skip milestones like that. So it’s like, again, what does it matter if have people from our lives if they knew us when we were three versus, not? Like again, our conditions don’t go away and we can actually articulate our lives and our conditions a lot better as adults versus three years old. And again, why does it matter so much with that specific age? Because throughout our childhood, especially elementary school, we go through so many changes, like girls are masking, boys have to feel like they have to prove themselves. It’s like there’s all these weird hierarchical, hierarchy things that go on and that is just going to become so much more apparent with autism and ADHD. Yeah. Like to me, that’s when you’re really going to have symptoms come up when you’re, you’re like in kindergarten to me through elementary school, but that’s just kind of what I’m guessing. I really, again, not a childhood expert and I don’t have children.

Martha: I think you’re pointing out part of the problem with research, too, is that, sometimes the researchers are trying to backfill because, oh, surely there were signs. Well, I don’t know about three.��

Amanda: That’s just the diagnostic age. For some reason, it’s always three years old. I just don’t know why. I just take that as you were a little kid at a restaurant where you were bored out of your mind. Like, to me, that actually sounds like a pretty normal reaction for a baby or whatever age you were. I can tell you that’s what I would do.��

Martha: Well, that might be what you would do, but I’ve never seen, I’ve never heard of another child doing that.��

Amanda: Why would you take a little kid like that to a restaurant like that? like, what are you getting out of that?

Martha: Probably because they didn’t have a babysitter 

Amanda: I know, but it’s like, you don’t take a little kid like that to a restaurant. You’re just asking for trouble. Like that is on your parents. I’m sorry. That is not on you. Like you just asking for trouble there.

Martha: yeah, but still the reaction totally shocked my parents. We didn’t go to any more restaurants for a long time.��

Amanda: Nah, shame on your parents. And like, no offense to your parents, but that was totally on them 

Martha: Yeah, well, they were young. They didn’t know better. I don’t know. Anyway, The stories that, I got told when I was older about things that I did, another one being that we were living on an army base because my dad was in the army and for some reason they did these, drill things where they would shoot off the cannons.��

Amanda: Oh God. I hate those.

Martha: Well, I apparently had really negative reactions and I’m thinking, yeah, I’m super sensitive to sound. But then when we moved to Portland, they used to have this parade as part of the Rose Festival a long time ago, where they also, during the parade, They would shoot off things and I, again, completely lost it. We had to leave. We never went back. They don’t do this parade anymore. They’ve completely changed it. But, yeah it’s just like, no, don’t put me in a situation where people are going to be shooting off things that make loud sounds.��

Amanda: I just don’t think that’s a hard request. But yeah, sorry. We have to move on to the last questions, but, 

Challenges in the Diagnostic Journey

Amanda: What advice do you have for people who are currently on their diagnostic journey, what should they be prepared for when seeking a diagnosis.��

Martha: It’s going to cost a lot. It’s going to take time. And it may be difficult to find somebody who’s able to do it. I mean, I was able to find someone to do a diagnosis because I actually went to a friend who teaches psychology ����ֱ�� who used to work as a clinician who was able to help me find somebody and I still had to wait from my initial outreach to the person who did my diagnosis to see if I could get a diagnosis. It was. many months from initial outreach to when there was time for the diagnosis. And yes, it was expensive. So those were the things, for me, that were the biggest challenges, and I suspect those are still challenges for everybody .��

Amanda: Yeah, I would definitely say, try to find a provider within your network because maybe the assessments themselves aren’t going to be totally covered. But at the very least, you’ll get a discount potentially, but don’t quote me on that. But I would say overall, keep within your network if possible. I would also say follow your gut with providers. If you’re not comfortable with a provider for whatever reason, just follow your instinct because you’re not going to have a good time with them off the bat.

Martha: Yeah, that’s why I went outside of network because I wanted somebody who I thought I might connect with and so that’s why I asked somebody who I trusted if they could recommend someone and the person I saw did not accept insurance. I did get a statement that I could have turned into my insurance and at that point. I just didn’t feel like I wanted to. and this year I’m trying to. find a therapist within my network and it is proving to be a completely frustrating situation. I did have something that I needed a short term piece of help with, So, I went through the employee network that as an employee, you have access to short term therapy. And so I used that for something that I just needed this one thing to be dealt with. And I got somebody who was helpful enough that I was able to get through the situation, but who I would not go back to for long term therapy. And it was like, very nice person. really didn’t, despite what people say, and this is where my frustration comes is when you’re looking at lists, people will check oh yeah, I deal with autism. I deal with adult autism. But when you actually talk to them, their real understanding is wacky.��

Amanda: Yeah, like I got referred to the psychologist who diagnosed me for my therapist. I needed her for the diagnosis, but I wouldn’t see her long term. I will say she was very accommodating with my paperwork and she actually put in the language I wanted for the paperwork that she was as specific as possible to ensure my accommodations were met. she really wasn’t a bad person or anything, we didn’t really click, and the thing of a therapist, no matter what level you are with mental health, you need to be able to be comfortable with your therapist, you need to click with them, and that really was all it was with her, so I definitely agree with you there, and even people who do specialize in autism, quote unquote, their understanding is based on studies, it’s based on what the APA provides, the American Psychological Association, And so I think their understanding of autism and ADHD, it’s an attempt to be empathetic, but it’s not personal. they’re not really taking their patients at their word. They’re just trying to rely on studies and what they’ve been trained to do. At least that’s kind of my take on it 

Martha: Yeah, I asked if it was possible to find a therapist who actually had autism. And, I was told they don’t have to disclose that, although I have found online there are some people who will, but they’re all completely booked, and so it’s like, no, we won’t help you find somebody. I’m like, well, you know what, I think it might be helpful, to know more about their background, because I actually started researching what different kinds of training mean because it’s like now we have this person and this person and I’m like yeah well given the kind of training they have I’m not sure that they’re going to be able to help me but That’s a real challenge, too, because you can be labeled a mental health professional with different kinds of backgrounds and some are more helpful than others.��

Amanda: True. I just have to say that, like with ABA, for example, all you need to do is go to grad school for like a year, and it doesn’t matter what mental health professional training you’ve had beforehand. Like, I could get ABA certification in a year, and I don’t even have any mental health training. That’s how loose it is sometimes. Part of why I think ABA is so bad. So, to close, oh sorry Martha, go ahead.

Martha: I was just going to agree with you.��

Amanda: so we’re kind of winding down with this discussion now, so do you have any closing comments or questions 

Closing Thoughts and Future Discussions

Martha: I don’t know that I have any questions except I’m always curious about what other people think and what other people’s experience is. just what it’s like to be, we were both diagnosed as adults, what the difference is, if you’re diagnosed younger, or if you’re dealing with autism plus another minority, condition besides being female. so either multiple disabilities, racial and ethnic minorities, language, minorities, other things. I just, think every time you add another layer, it gets more complicated.��

Amanda: What I would say is that it’s not, I don’t think it’s about it being complicated, there’s just a lot more barriers to overcome, because it comes down to the same issue at its core, and that’s the fact that experts aren’t taking people at their word. It’s like they’re relying too much on studies, they’re relying too much on old data, and they have their own biases and, they are adhering to stigmas that they’re not openly admitting to. So I definitely agree with you, it does add more complications, most definitely. But I also think that it comes down to that very core attitude that really needs to be shaken and challenged.

Martha: Yeah, It’s hard but it’s necessary to keep looking and seeing what biases are coming up.��

Amanda: So, I think that’s about it. Thank you so much for joining me today, Martha. I really appreciate you and if you ever have another talk you want to join in on, go ahead and sign up.

Martha: I will certainly do that. Or if you have a hole and you think I might be a good candidate for filling that you can always let me know too.��

Amanda: Yeah, definitely. Thank you so much and have a great day.

Martha: Thank you.

Amanda: With that concluding today’s let’s talk autism discussion. I hope Martha and I left you with new thoughts on how the attitude surrounding autism have been slow to change, but has accelerated in the last few years. This is most likely due to the fact that autism has become normalized due to media representation and featured in apps like TikTok, reaching audience members who most likely would not have heard of the condition otherwise. Earlier, it was mentioned that the diagnostic scope has also expanded, which contributes to the rising trend in autism diagnoses. However, the most damaging stigmas surrounding autism remain and research is failing to support the community’s personal perspective. Thank you for listening and I hope you tune in for the next episode.

Asher: Thank you for listening to Let’s Talk, ����ֱ��’s broadcast about disability culture. Find more information and resources concerning this episode and others at . This episode was produced by the Let’s Talk Podcast Collective as a collaborative effort between students, the Accessible Education and Disability Resource Department, and the PCC Multimedia Department. We air new episodes on our home website, our Spotify channel, X Ray 91. 1 FM and 107. 1 FM and cable radio 90. 7 FM.

Episode Transcript

Transcript edited by Hannah “Asher” Sham

Summary: In this episode of Let’s Talk Autism, Amanda Antell and Eliana dive deep into the portrayal of neurodivergent conditions in media, focusing specifically on autism and dissociative disorders.��

Introduction to Let’s Talk

Kylo: You’re listening to Let’s Talk! Let’s Talk! is a digital space for students ����ֱ�� experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers, and do not necessarily reflect the opinions or positions of ����ֱ��, PCC Foundation, or our community partners. We broadcast on our home website, on Spotify, on X Ray 91.1 FM and 107.1 FM, and KBOO Community Radio 90.7 FM.��

Discussing Neurodivergence in Media

Amanda: Welcome to this episode of Let’s Talk! Autism. I am the host and producer of the series, Amanda, and we will once again be focusing on how neurodivergence is depicted in the media. In particular, I had the privilege of discussing the demonization of dissociative disorders with my guest Eliana and how it is reflected in our society. Before listening to this episode, please be aware that serious issues like mental illness and physical and sexual abuse will be discussed. Nothing discussed in this podcast is official medical advice in any capacity, and you should seek help from your provider if relevant. Please consider this your trigger warning and enjoy the episode.

Amanda: Thank you very much for being here with me, Eliana. I’ve been looking forward to this topic for a long time.

Character Analysis: ADHD and Autism

Elianna: Thank you. Yeah, me too. So, I have my Jane Eyre book with me because there’s a character in here who’s not diagnosed, but you have ADHD. I did a quick Google search of characters who have ADHD and it’s a lot of things that I haven’t read.

Amanda: And we can also do that dissociative focus if you wanted in this interview as well.

Elianna: Oh yeah! Well, actually Jane Eyre is such a wonderful transition into that when we discuss, mental illness in the fictional media. Because, it’s also in Jane Eyre, it’s not diagnosed, and I didn’t even know what the diagnosis would be. There’s a character; she’s not mentally functioning like most humans do. It’s like in a hallway and both of you are trying to pass each other but you keep moving in front of each other.

Amanda: Yeah, that happens with me a lot. let’s go ahead and start with introductions. please give your name, your gender and pronouns, your major slash occupation, whether you have autism ADHD or other neurodivergent condition, please.

Elianna: My name is Eliana. I use she, they pronouns. I have ADHD, dissociative disorder and PTSD.

Amanda: My name is Amanda. I use she, her pronouns. I Am currently a full time student and will be applying to vet school next year, and I have autism. Do you want me to start off with the questions, or did you want to kind of just talk about Jane Eyre? I apologize if I didn’t say that name correctly.��

Elianna: Well we can keep the questions in structure. I don’t really know if I have favorite neurodivergent characters. Because, I don’t know if I’ve watched enough media with characters who have blatant ADHD, autism, or anything like that. I know that there’s been much more of a thing where certain characters have been coded for having autism or ADHD like “Entrapta” and “Peridot” from She Ra and Steven Universe. Those characters are coded at the very least, and it’s become a thing to include more neurodivergent characters in modern media. I personally love going and looking at media that were written before diagnoses were a thing, and you can tell.��

Amanda: House MD. I’m gonna probably talk about it this interview too. But, House MD Oh, my god. He was one of the most perfect representations of autism ever. He very clearly has Asperger’s or some kind of higher functioning form of autism. It’s not just him being a genius, it’s just being difficult to work with, it’s his coping mechanisms, just how he takes life. It shows all of the dimensions of living with that condition that I really appreciated about House. I’m not saying he’s a great guy. I’m saying he’s an awesome character though. He was almost a perfectly written character. I hated Cameron. I thought a lot of the characters in House were just so brilliantly written.��

Favorite and Least Favorite Representations

Amanda: On that note, I’ll just go ahead and start the first question. What are your favorite autistic or ADHD characters in media? Do you feel that they represent the autistic or ADHD community? Why or why not?

Elianna: I have characters I like who I think have ADHD. So, I’ve brought this up before. It’s like characters in Game of Thrones who are described as “wolf blooded” in the Stark family. I think is code for ADHD. Whether George RR Martin recognizes it or not. Because, they have the impulsivity, emotional dysregulation, a strong sense of justice. They have certain quirks that I go like, “this reads as ADHD to me.”. Reading “Jane Eyre”, it was fascinating. Just like this moment when we’re with the childhood friend character, and it’s, “Oh, you have ADHD!”, and one of the things with this book is it’s almost autobiographical. Because of how her life was. So, I know that she had a friend who she strongly bases character off of. So, that means, here’s a person in history who probably had ADHD. It’s interesting to go back in time and see these characters who probably have neurodivergence. Jane possibly might be neurodivergent because of her strong sense of justice and other things, but I didn’t have anything that’s strongly read one way or the other for me.

Amanda: That’s interesting. for me, I would say that the best autism representation I’ve ever seen in media; one character I’ve recently discovered is Moss from the IT Crowd. I think he is the best representation of autism on a sitcom. Because, the way he talks, his mannerisms, how he handles social situations is just on point I don’t know if he’s ever officially said he’s autistic, but I definitely recognize the way he’s written and just all the quirks with him. I just really appreciated that, and I think IT Crowd was, I want to say mid 2000s, based on that. And I don’t know if Big Bang Theory was based off of it or not. It’s very similar in style. But, whether it was or wasn’t, it’s like Moss; you want to write an autistic character, you definitely should look to Moss from IT Crowd. seriously, one of the best. Other character I really appreciate in media that I can’t not mention is Luz from Owl House. Owl House is amazing, you should definitely watch it, despite what Disney did to it. I just like the way Luz is represented because her autism reminds me a lot of mine. Where it’s like she has a lot of really strong special interests, and I wouldn’t say she was diagnosed latently, but she discovered she was basically neurodivergent when her mom has this heart to heart with her. Saying that she didn’t want Luz to be different because she was different too. that just really hit home for me because with autism sometimes parents don’t want to admit their kids are autistic because they were. Because, that’s admitting that there’s a problem.

Elianna: Yeah. Diagnosis within families, especially when trying to communicate with older generations who are carrying different stigmas from different cultural norms. It’s a time. It’s certainly a trial.

Amanda: Yeah, and the thing about Luz that I found really heartfelt was the fact that in the episode that I mentioned Her mom has flashbacks where some principal, or some other kind of authority figure, is talking down to her about just how different Luz is and how she had to be fixed. That just really hit home for me. Because, again, it’s like the autism thing where I wasn’t diagnosed as a kid, either. But, I can definitely tell you my mom was told similar things. Like I mentioned there was that weird counselor back when I was four or five who said I’d never learned to read. My mom was fighting all those stigmas and essentially trying to make me “normal”. Because, people were telling her She had to fix me, and Luz’s situation with her mom reminded me a lot of that.

Elianna: �۱𲹳�.��

Challenges of Accurate Representation

Elianna: It really is nice seeing people who have diagnoses be in the writer’s chair and create stories that are meaningful to us. There’s things I love and there’s things I don’t love about this new style of writing trends that we see. But, that’s one of the good parts definitely of seeing more people have representation. Since, apparently, there’s a lot of directors who have ADHD and neurodivergences. I know that Greta Gerwig has ADHD, Will Ferrell has ADHD. There’s actually quite a few people in the sphere who have ADHD.

Amanda: You think they would make for better neurodivergent writing in a lot of sitcoms then?

Elianna: I don’t know. It’s whether you’re self aware of it or not, and what your own feelings about yourself are, in terms of neurodivergence. So, it’s possible to be self hating.��

Amanda: Well, also ADHD and autism are different. So, it’s just the fact that I think sometimes characters with ADHD are written fairly well. But, characters with autism can sometimes not be written well. Because, I don’t think autism is talked about as much? Well, I don’t know about that, because autism is kind of weird in media, if you ask me. It’s mentioned a lot with characters that are super smart, which I know is a stereotype that we’ll talk about in this interview. But, I see a lot of characteristics of ADHD in characters, but they’re not flat out diagnosed or said. Would you agree with that or not?

Elianna: I think I’d agree with that. I’m looking at this list of characters who’ve been diagnosed and a lot of these are shows I haven’t seen. But, I know that Calvin from “Calvin and Hobbes”, and Bart Simpson are both the boy stereotype of ADHD. I just don’t really think it exists a lot, and even then it’s a stereotype. they’re enjoyable little rascal characters. If they’re at least, boys. But, otherwise, I haven’t really seen these other diagnosed characters enough to know for certain. So, I tend to have more fun with the non officially diagnosed characters, I guess.

Amanda: This actually leads into a less pleasant topic; what are your least favorite autistic or ADHD characters, and why do you feel like they don’t represent autism, ADHD, or the neurodivergent community in general?

Elianna: Just speaking for ADHD, I don’t really feel like I’ve seen a depiction or heard of a depiction that would be offensive or harm causing. It’s just this stereotype or it’s that stereotype. But even then they’re usually the enjoyable rascal character. That’s just speaking for my own wheelhouse of ADHD. I definitely have more issue with the depiction of bipolar disorders, dissociative disorders, schizoaffective disorders. That’s where I start having issues with depictions. But, I have yet to personally run into ADHD where I felt offended or felt like the depiction would cause harm to the community.��

Amanda: Interesting, thank you. So, I definitely have two characters in mind, and I’m sure there are others. But, I’m just going to say the most harmful ones to me. Sheldon Cooper, I’m pretty sure you saw that one coming, and Sean from “The Good Doctor”.��

Elianna: It was a huge meme.

Amanda: Yeah, okay. So, you have heard of Sean from Good doctor, okay. There’s a reason why it was so bad. First of all, Sheldon Cooper, let’s all be honest, represents the absolute worst aspects of autism, specifically high functioning autism, where he’s borderline sociopathic, in my opinion, and he just doesn’t learn? he does learn, academic information, but it’s that stereotype where he can’t learn social interactions. That’s really not true with autism. We actually adapt very well to social situations, we have to or we won’t be able to survive. It’s the fact that he’s just written as a selfish character that doesn’t care about anyone, that really bothers me. autistic people already have the stigma of, we lack empathy. That doesn’t mean actual autistic people do.

Elianna: Yeah, I wonder how much that is just the long running sitcom comedy show structure. Because, the characters might have things change in their lives. But, otherwise the character usually doesn’t have a major development, because that would be a plot arc usually that doesn’t exist in the episodic format of sitcoms. We’d like to see this character grow and change. But, that just is in part and parcel to the genre, or the format. But, I do think “this is a character that should have grown and changed.”.

Amanda: Again, it goes back to autistic people not being able to function, essentially, in society. Sheldon Cooper, to the writer’s credit, he can hold down a job and he’s very successful academically. But, he doesn’t represent anything positive to the autistic community because of all the negative stereotypes he portrays. The Good Doctor, it’s kind of a similar thing. Sean is a very empathetic character, he has empathy for other people, definitely. The problem is he’s very inconsistent with accommodations and how high functioning or low functioning he is. For example, he’s high functioning in a high stress job, like a surgeon position. Obviously there are autistic surgeons, and I think we’re pretty good at it. But, he’s too low functioning to know how to form basic sentences, or full sentences. Just the way he talks, it doesn’t add up to what he can do in a surgery room. I’m not saying that it’s impossible in terms of autism. But, it doesn’t make sense. like they really are hammering in the fact that he can’t function socially. I’m like, “yeah, no. That’s not working.”.

Elianna: Did that show have other autistic people in it?

Amanda: Well, I think his girlfriend Leah has ADHD, At least whenever I force myself to watch the show, she reminds me ADHD issues. She has a lot of fluctuating energy, has trouble committing to specific things for long periods of time, and has trouble connecting to Sean on an emotional level as well. I’m not saying that’s good or bad ADHD representation. But, she kind of reminds me of that. I don’t know if it was flat out said she had ADHD. There’s also a spin off show called “The Good Lawyer”, which is basically a female copycat of Sean. I saw the trailer and I’m like, “No. Not torturing myself. No.”.

Elianna: Not even hate watching.

Amanda: Nope. Don’t wish to do that to myself. I’m not that much of a masochist, Elianna!

Elianna: Oh, yeah! Neither am I! I personally don’t understand the hate watchers. If I am going to be hate watching, I have to do it through a filter of seeing clips of someone else reacting to it or something, or making fun of it. Cause I don’t think I could take it raw.

Amanda: I can’t either. I can think of a couple of other autistic characters I’ve seen in media that had really minor roles. There was one autistic character in Grey’s Anatomy that was there for a short time, and there was another autistic character on Chicago Med But again, it’s that stereotypical “I’m a genius and I only care about my job” Not really anything else. So, that always bugs me about autism. Whereas, “House”, you get the whole picture of what living with autism is actually like.

Elianna: Well, the other thing with House too; he’s dealing with a chronic pain issue because of his leg. So, he is also taking medications and he’s dealing with substance usage and pain. It’s not just the autism, it’s other stuff too. Which I think helps people relate to him more. Because, in terms of characteristics of him, he doesn’t just have autism. He’s also dealing with this other stuff.��

Amanda: That’s a problem with a lot of shows right now. If there’s autism, ADHD, or other neurodivergent characters, it’s like you said, where it’s just a token or a checkbox thing. It’s not genuine in the slightest, and that’s another thing that bothers me about Sheldon Cooper. I thought he was actually a fairly funny character with the other interactions early on in the seasons, early Big Bang. But, as the Big Bang Theory progressed, they made him more and more negative of an autism character. They kept looking up bad symptoms of autism and just kept checking every box with them.��

Elianna: Unofficially, consulting with Autism Speaks.

Amanda: Exactly! Yeah. �۱𲹳�.��

Elianna: If you want to have a fully rounded character, you need to not just have them be neurodivergent. They need to have other stuff going on with them. I personally would love to see, not just having the one character with a neurodivergence. Which is why I ask with The Good Doctors, if there’s other people with autism, then they can go autism doesn’t just look like this. It also looks like this. They can then talk about in community stuff. I think that’s one of the other issues with writing characters, Especially, if you don’t belong to the group. You don’t get that in group knowledge of meeting other people with the same diagnoses.

Amanda: Yeah, most definitely. We talked about stereotyping ADHD with Calvin and Bart, where they’re boys. The symptoms are yellow, so I don’t want to say they’re white. I have no idea. But, with Sheldon and Sean, they’re both white males, with Moss from IT Crowd, he’s black, and a couple of characters I also mentioned that were kind of minor in those shows Grey’s Anatomy and Chicago Med. One was a woman and one was black respectively, so that was slightly better with representation. But, it’s still that stereotype. Whereas, Moth, it’s yes, autism doesn’t just come as a white person condition.”.

Elianna: Yeah. That’s something to be talked about. Especially in real world issues with police violence. Cause I remember there was that time in Florida when I don’t know what the term would be. But, there was a autistic black man who had a career and he was just not very aware of his surroundings and the way most folks would be. So, it became an issue with the police and then the police still fired. No one died, thankfully. It could have been a lot worse, but still it was the bias against people of color. Especially if they’re neurodivergent.

Amanda: Yeah, and I’ve talked to a couple of people of color who have neurodivergent conditions too and it’s a struggle. Because, they’re essentially in constant fear they miss the social cues like we do, but it’s scary when you’re black, because if you miss the social cues around a police officer you’re potentially gonna get shot.��

Elianna: There was a clip I saw recently in the UK. There’s a South Asian doctor, someone who’s from Africa, I don’t remember which country or like their family was from Africa at least. And, there was someone else there and they were talking about the stigma in immigrant communities against getting diagnosed and how getting diagnosed is treated. Remember the quote from the teacher that this person from Africa said was, I think it was Nigeria maybe, but it was like the teacher said something about getting a diagnosis done because she wanted to know and, I quote, “if there’s something going on with you or if you’re just stupid.”. I could link it if you’d like. The clip from the podcast there’s certain cultural stigmas in different groups.

Amanda: The best way to put it is I’m aware that autism and ADHD are treated differently throughout the world. I’ve seen that with my mother-in-law’s family and through my wife’s friends who live in different countries. I’ve even seen it with teachers who weren’t born from America, but you know live here. The difference is definitely there where neurodivergence isn’t a thing that’s talked about in their culture. They don’t really know how to talk about it with us and they don’t realize why it’s considered rude to say, “you should know how to do this.”. I’m not saying it’s good. But, yeah, it’s not surprising.

Elianna: And, then the fact that they keep circling back to depiction, they keep doing the same character with the, “I’m really good at my job”, or you have little boy rascal, Anthony Hopkins, has autism. Like, there’s so many people in real life who we know have different diagnoses, but you keep making the same person, just a different name.

Amanda: Yeah, totally.

Elianna: I appreciate it more if writers would look around and see things circling back to, only having the one token character with neurodivergent diagnoses. We tend to flock though, most of the people who I know and interact with have ADHD, autism, or something else going on. We tend to just cluster. So, having a lone, autistic or ADHD character doesn’t make sense. It really does not reflect reality in terms of how we socialize and the friends we make.

Amanda: I agree, and it’s that whole stereotype of we can’t make friends that really pisses me off, too. We have difficulty with social interaction, that doesn’t mean we can’t make friends, and that we don’t want to.

Elianna: I think that might also be why we cluster. It’s just easier for us to understand each other and gel.��

Amanda: We don’t have to explain why we sit, in specific areas of a room, or we have to have, this one chair, or wear sunglasses inside. We don’t have to explain why we have to record conversations sometimes, None of it’s needed, we get it.

Elianna: We make the same noise or a similar noise back.��

Amanda: Or someone has to have a fidget cube or knit while we’re talking and someone else is, not so they have to occupy themselves some other way. No, that’s not offensive, that’s just their way of keeping themselves engaged in the conversation without going crazy.

Elianna: Or being uncomfortable with eye contact. It’s like, “please don’t look at me and don’t expect me to look at you.”.

Amanda: I don’t know if I’ve seen that media representation with autistic characters. At least, I don’t really look for that. I just am watching for entertainment purposes. But, the characters I can think of that have good autism representation or even bad representation. Sean is the only character I’ve seen that explicitly has that issue. Other characters I’ve seen in media, good or bad; I either don’t notice, or they don’t make a big deal out of it, or they don’t have that issue. I don’t think the characters directly make eye contact a lot anyways.

Elianna: That’s interesting. Because, now some studios are using a certain AI to make the actors look like the actors were looking in a specific direction at the other character when they were actually looking up here. it was just like, why? Why are you doing this?

Amanda: I actually didn’t know that. So, maybe that is happening, I just don’t notice. Cause, I’m not very familiar with how media works like you are, Eliana.

Elianna: I remember seeing someone, maybe they did that in The Bear and seeing that it’s like, why are you doing this? The reason that a lot of shows get dropped after the third season or so is because of labor contracts and they don’t wanna pay people. That’s why there’s three seasons or so of a show, and then it gets rebooted as a new show in order to keep the costs down, so they don’t have to pay who work on it. I can understand from an evil capitalism sense of why some decisions are made. But, I don’t know why they’re making this AI decision to make actors look in a specific direction.

Amanda: Maybe it’s a cut down on labor costs like you said. Because, if there’s less takes to do, there’s less hours to pay them. At least that’s my guess.

Elianna: I don’t know. Where a character looks, can convey emotions and certain thoughts. So if you’re looking down or looking up or to the side, it conveys what their state is.

Amanda: I don’t really pay attention to that, to be honest with you. So, I don’t know. I’m not saying I don’t believe you, it’s just I really don’t pay attention to that at all.

Elianna: It’s the whole context of disrespecting the actor’s decision and letting human characters be human and not have direct eye contact the whole time.

Dissociative Disorders in Media

Amanda: Eliana, do you want to go into the dissociative disorder representation now, or do you want me to continue the questions?

Elianna: We can get to any of the questions.��

Amanda: I just want to make sure that you get to talk about what you want to talk about, because I know this was pretty important to you.

Elianna: Conversation of having a tasteful and nuanced depiction of neurodivergence. Because, there are cases where neurodivergent behaviors can be harmful. I had a friend who had a partner with bipolar disorder, who then became very controlling in certain ways where it became scary, and was like, “I’m not going to go pick up my medication from the storage unit unless you come with me”, and refuse to leave the apartment, and was making my friend feel very uncomfortable and nervous to the point of needing to call the police, because of how much this person refused to leave their apartment. So, it can be scary but then bipolar people are not going to do a suicide thing and take you with them, or it’s, like the depiction of disability. I had a classmate whose dad had paranoid schizophrenia would sometimes have an episode where the dad would believe that his kids were conspiring against him and start screaming and accusing them of stuff. That’s not a pleasant thing for those kids to deal with, but it doesn’t mean that the dad was evil or a monster. I don’t want to say that, you can’t have certain portrayals where neurodivergence is a mental illness is an issue or a problem. But, there’s a certain level of demonization that I see continuously happening where it needs to get addressed, of it being treated symbolically instead of a real thing that people have.

Amanda: Thank you for sharing that. I don’t know if saying sorry would be good here or not, but I think people’s mental illness, however they choose to handle it, it’s their business, is the way I see it.��

Elianna: Well, there’s this movie called “Censor” where the character, she’s a censor official for the British broadcasting service. Cause they had a lot of rules about what could be shown in Britain. So, she was a censor, but then she starts having this mental breakdown wondering what’s real and what’s not. And it turns out that she has dissociative disorder because she killed her sister. As a child, so then she drowned out that memory of killing her sister and now she’s going on a violent spree and it’s just this isn’t what dissociative disorders are and I can understand being frustrated about the lack of freedom of speech, especially with how controlling it was back in the day in Britain, but you don’t get to make a demon out of people with a dissociative disorder and then you know, with split and glass where the guy becomes demonic Spider Man one of his alters can make him crawl up a wall and throw a car he wants to kill people and that’s not what this is. it’s very cheaply done where this person dealt with the abuse that’s why they have all these different alters that do these. Tasks where you compartmentalize different parts of yourself, which can be true of dissociative disorders, but then you make them a monster and it’s just not okay, and also another gross thing split is the main girl character was abused by her uncle or something. And, now she has scars on her lower abdomen. The reason that she gets spared is because the demon altar. Sees her scars and then calls her one of the chosen angels or something it’s just a really gross way of talking about scars, and people who are abused because not everyone who is abused is going to have bodily scars on them the fact that she got spared just because she had scars, like if she didn’t would she still have been murdered even though she had been abused? It’s just, so messy and wrong, ew. Then you see this character of Ratchet in the Netflix Ratchet show and it’s Nurse Ratchet from One Flew Over the Cuckoo’s Nest is the avatar of medical abuse. You don’t need to give her a girl boss arc. it’s certainly offensive to me. I don’t know if it constitutes as doing harm, but they also gave her the was abused as a child and now doesn’t remember and has a dissociative issue about it. It’s this form of filmmaking art where we’re making something that’s wrong, and we know it’s wrong. Hopefully the audience will tell it’s wrong. It’s the whole issue with satire; does the audience pick up that we’re making fun of whatever we’re making fun of? I can’t tell if this is tasteless on purpose or not. That’s the frustrating part. And, then when Netflix advertises it with here’s like nine times Nurse Ratched slayed or was a savage, here’s Trixie and Katya reacting to the show. There’s other issues like a nurse in the psych ward who finds it sexually appealing to have sex with mentally ill men because they could snap at any time and kill you and that makes it hot. This is so uncomfortable and this is a severe violation of consent there is actual real sexual abuse that happens in, psychiatric hospitals. It certainly happened back then, but we’re not going to talk about the lack of consent. the issues of having your freedom taken away. of being mentally unwell to the point of needing to be in a psychiatric hospital and then having medical practitioners who genuinely care about their patients and will take care of them properly versus exploiting them. There’s a movie that talked about this really well called Unsane. It’s a thriller about this woman who gets roped into a psychiatric hospital. She’s wondering if her stalker is following her into the psychiatric hospital, or if it’s just delusion. Then it also talks about the exploitative nature of profit, psychiatric hospitals. So, it’s a thriller and it’s uncomfortable to watch but it’s very sympathetic to people who are mentally unwell. In the system itself. So, that’s frustrating when you can see people do it right. there’s just a lot of people who don’t and keep using mentally unwell people like monsters. I keep thinking of that line from the elephant man. I am not an animal. I’m a human being. It’s just hurtful. And so frustrating to keep seeing it over and over again. Sometimes it’s more of a gray area, like with the taking of Deborah Logan, where that’s a horror movie about dealing with the grief of losing your loved one to dementia and sundowning. Sundowning is a real thing where an elderly person who’s starting to lose their mental faculties, become combative once the sun goes down. It varies in how severe it is. it’s a horror movie, so it does go the extra mile in certain ways, which might not be great, but you can still see where it’s about the grief of losing your loved one to a mental breakdown as they get older. I don’t want to be the grand controller of what is a proper thing to write. Especially, since this is something that’s been talked about in queer media where someone might not be allowed to write about something that’s queer. Maybe they are straight, but maybe they’re closeted and don’t want to come out yet so we don’t want to force people before they’re ready. It’s nuanced conversations while also dealing with the fact that mentally ill people are still subjected to police and other kinds of violence like poverty, homelessness, and domestic abuse. It’s just a really rough time.

Personal Experiences and Broader Implications

Amanda: Thank you for sharing that. really thoughtful I’ll be honest. I’ve never really put a lot of thought into how mental illness is portrayed in media. That being said, It definitely contributes to stereotypes that I definitely do carry.  With the homeless situation. In particular, I had to ride the max down to class at OHSU and at Portland State main campus. I always made it a point to stay as far away as possible from someone who was homeless and talking to themselves. Because, I didn’t know if they had a knife, didn’t know what would happen, and it’s just the fear of the unknown for me. What could happen when I’m trapped in this metal box that’s moving on the rails with no security and there’s no guarantee that someone’s going to help me if something happens.

Elianna: Right?

Amanda: I feel bad about that, in terms of that demonization, because I think it might, unconsciously make my prejudices worse, that probably is a certainty. But I’ve also had a genuinely very scary experience with a homeless person down in Corvallis, where I was walking back from a mini mart and I just happened to make eye contact with a guy that was sitting on those cement wall things that hold up dirt. And we made eye contact, he brandished this huge ass hunting knife and I just booked it out. I ran and I was genuinely scared for my life. Don’t know what that guy’s problem was, or what was going on with him, but I was seriously scared for life.

Elianna: With the current homelessness situation, it’s there. So you might have someone who already had mental health issues and was dealing with trauma, abuse, or something. Being homeless is hard. So if they didn’t have a drug addiction issue before, you can develop an addiction issue because of how much it sucks to be homeless. Like there’s the trauma of being subjected to violence as a homeless person. We need better systems of care for people so then they don’t end up homeless, and they can get the psychiatric help they need without ending up in a really bad institution.

Amanda: If they don’t have access to medication, or if they refuse to take medication, that’s when someone could become a danger.

Elianna: And that’s the point of debate, if you’re a danger to yourself or others, that’s when institutionalization might come into play.��

Amanda: Problem is with homeless people who either don’t have access to the medication or refuse to take them, and this doesn’t even have to be a homeless person, it could be someone would be a perfectly functioning person with medication, but if they get well enough, they get to the point where they don’t think they need the medication anymore and become dangerous again. Can we really trust that they’re thinking clearly enough to even make that evaluation where they could actually ask are they a danger to themselves or others? I don’t know if they would have the mental faculties for that at that point.

Elianna: That’s the legal debate.��

Conservatorships and Legal Challenges

Elianna: Conservatorships that’s been in the media recently talking about Britney Spears, famously. With her conservatorship and how it became abusive. Exploitative people, sometimes, who don’t have the mental state to make wise decisions for themselves. So, then it becomes a conversation of, “okay, how are we going to restrict this person’s freedoms to take or not take a substance, whether they’re going to be under house arrest or in an institution, when they no longer need to be in that space, whether they can take care of themselves, or if they’re going to need lifelong care?”.

Managing Mental Disorders: Personal Experiences

Amanda: Well, that’s the problem with mental disorders too. They’re permanent conditions. There’s no cure for them. It’s something that they do have to manage throughout their life. And that is frustrating because I can tell you with my own experience with panic attacks. I am cognitive, normally I am logical, I can logic things out about what’s going on with my body, but I can tell you that when I’m in a panic state, I’m so non functional I can’t even perform a Google search. I would not have the mental faculties to determine if I was a danger to myself or others if I had something like schizophrenia or bipolar. me, that’s why It’s a dangerous situation and a very complicated conversation. Yes, you do want to keep this person to maintain autonomy, but at what cost to others around them?

Elianna: Yeah, so that’s keeping tabs on people with caseworker or something if they don’t have a family unit to keep an eye on them.��

Amanda: But, to me there’s a lot of holes in that too. Because, a caseworker isn’t going to be around 24/7, so they could just be there on good days where the person is basically trying to present themselves as normal as possible. But, then very next day, that night or next morning, they could have an episode.

Portland Street Response and Social Programs

Elianna: Well, that’s the nice thing about the Portland street response. That’s part of putting money into social programs; where if someone is behaving in a certain erratic way, then the person who is dealing with that can call Portland Street response and that can be a part of managing that person’s case and seeing does this person need to be on a tighter leash? Does this person need to be in a community shelter, sort of situation, because of how they continuously have issues with taking their medication and becoming a danger to those around them.��

Cultural Variations in Mental Health

Elianna: it’s also been recorded especially with schizoaffective disorders hallucinations will vary by people and then it also varies culturally. In the west people’s schizophrenia can have very negative audio or visual hallucinations where people are watching them and it’s very antagonistic. It adds to the stress, and then in India, or so, they’ll have hallucinations like kind words from loved ones compliments or other sorts of things. I knew someone who had hallucinations. One time her teacher and a bunch of ducks were in her kitchen. Then if she gets really stressed out, her hallucinations and other paranoid delusions will get worse. It’s a complex situation we’re looking at is this just this person’s main baseline, regardless of what’s going on around them, are they getting worse because they’re under duress? It’s a case of where there needs to be a system of support around this person who’s keeping an eye on things who’s making reasonable decisions about; “is this person who just needs help a little once in a while?” or “is this person who’s going to need to be in a care facility because of how their mental disorder is presenting itself, and maybe their lack of willingness to take steps to take care of themselves and be well around others.”.

The Resource Dilemma in Mental Health Care

Amanda: The problem with that it requires a lot of resources and support for just 1 person. And, we’re talking about a massive [amount of] people. Not just in Portland, but in San Francisco, and really what kind of infrastructure can support that? Because, even with the Portland Street response, I guess they’re already stretched to the limit.

Elianna: Well, part of the issue is funding that’s allowed to be channeled to those groups.��

Amanda: But that’s my point. All the support sounds great, but where is the money for it?

Elianna: Well, the thing is it gets funneled elsewhere. Like the Portuguese system of drug decriminalization worked great and it was working wonderfully. then they got their funding slashed by like 80 percent and then things started to become an issue again. It wasn’t the fault of the program, it was the funding getting slashed.

Amanda: That’s the problem. It’s still lack of money. I’m not saying you’re wrong, but that’s the core issue, there is no money.

Elianna: I wouldn’t say that’s the problem with the system or desire. I would say that’s the problem with capitalism. this idea that we’re going to put all our money into throwing people in for profit prisons. That’s what we’re going to do in our attitudes of what we’re going to decide to fund. We don’t fund medical care, we don’t have universal health care. We have all this money that’s getting continuously funneled up to the 1 percent and other echelons when that money would be much better. Put towards certain programs.��

Amanda: But, again, what’s the immediate solution? Cause I’m not disagreeing with you, Eliana, that’s not the issue. The issue is, is that there’s no immediate solution in the meantime for all those social infrastructure changes to happen.

Elianna: I know that and that’s one of the things to talk about what does happen to these people then what is the solution. If we don’t have this funding and if we don’t do that.

Amanda: Currently, the solution from what I see whenever I go down to Portland is essentially just to let them die out in the streets. In that case, which is better? To have them in an institution where they at least have shelter and food? Or, is it better just to let them rot in the streets where they’re a danger to themselves or others? I’m not saying either solution is good. What I’m saying is that at least the institution does provide a public safety aspect.

Elianna: Well, I’m not anti-institution. A hospital isn’t inherently a bad place, but there can be a certain lack of oversight in the hospital that leads to medical abuse.

Amanda: That’s really common even in normal hospitals. It’s not just psychiatric institutions.

Elianna: I’m not anti-institution at all. I do think there are some people who need that extra support and level of safety and care. So, It’s just making sure it’s done ethically and that they have everything they need to function properly and make sure that everyone is safe.

Amanda: Yeah, and I’m sorry. I wasn’t trying to turn this into a debate. I really do respect your opinion, and I do agree with you that major social shifts should change to actually provide support for these people, and it’s not even that I think people who are mentally ill are bad. It’s just frustrating for me, because I hear debates like this a lot, but in the meantime people are dying. Can we put our political differences aside and actually come up with an immediate solution?

Elianna: �龱�����.��

Historical Cases of Mental Health Mismanagement

Elianna: I think one of the concerning things is we have a lot of people who have the money and power in the St. Mike, they have very eugenicist ideas. Or, they would call it Darwinist. But, it’s really eugenicist ideas of we’re just going to take the people who are not normal and we’re going to put them away.

Amanda: I think the Kennedy family did that to one of the women, didn’t they? 

Elianna: Rosemary Kennedy.��

Amanda: Yeah, okay, I did remember that correctly.��

Elianna: What happened was she didn’t have enough oxygen at birth. There was flu or something going around so the doctor wasn’t present. But, the nurse held baby Rosemary in the vagina to wait for the doctor to get there. We haven’t been giving birth without official doctors for years, so she was denied oxygen at birth and that affected her brain state. It’s not like she was As far as I’m aware, super out of it. She was a little off kilter, but that wasn’t in plan with Papa Kennedy.��

Amanda: It wasn’t the perfect political family at that point, so they had to send her away.

Elianna: Yeah, so they sent her away and they got her lobotomized.

Amanda: That was a common practice with autism, too, for a while.

Elianna: Yeah, and Patriarch Kennedy, he got his money from running and being a gangster, but then he wanted to clean up the family’s image. So, her being mentally unwell does not help the family image. He had her put away and they knew during her lobotomy, content warning for medical abuse and something really horrific, they knew that they were done turning her brain into mush when she couldn’t continue repeating the Lord’s prayer and the, pledge of allegiance until she could not form words anymore. It was just so sad. The mom and I think one of the sisters would visit her once in a while, but it was not a pleasant time. Patriarch Kennedy never visited her. I don’t even think John F. Kennedy knew where she was. He would ask about her, but he had no idea where she was or what happened to her.

Amanda: That’s pretty awful.

Elianna: So yeah, we’re learning new things. We learned something about, I think it was schizoaffective disorders, where it’s like people become catatonic. It turns out it’s a form of autoimmune. They kept trying to treat it with antipsychotics. But, there’s a lot of women in particular who were getting treated with antipsychotics for a psychiatric issue when it turns out it was like lupus. So, we’re learning new things all the time about how mental illness works.

Amanda: They’d have to specifically test for the lupus gene, though, and I think that’s probably why it was missed.

Elianna: Maybe.

Amanda: I think there actually is, a genetic test you can get for lupus. I might be wrong about that, but I do know there was one for Parkinson’s. I would think that there was one for lupus. I know it was a genetic condition.

Elianna: Anyway, it was some kind of autoimmune issue and not just a psychiatric issue. So, hopefully now more people will get help as we understand these different conditions better.

Amanda: That actually can bring us back to the conversation.��

Media’s Portrayal of Dissociative Disorders

Amanda: So, going back to the media, how would you say that the media gets dissociative disorders like this wrong? We’ve talked about this a lot with these movies you brought up, but is there any specific commonalities you’ve seen? You brought up demonization, but is there anything you want to add to what you see in media most commonly with mental disorder demonization?

Elianna: Well, if you have a dissociative disorder, you are going to be most at risk. There’s different levels of a dissociative disorder. You can have alters. I am not aware that I have any alters. I think I almost developed alters because of how stressful my middle school experience was. But, it’s this whole thing of, your brain trying to defend itself. I remember hearing this story of a woman about to go through a C section and the doctor asks her how much of this she wants to remember. The woman says, “I don’t want to remember any of this.”. So, then they just give her a bunch of morphine, so she doesn’t remember it. That’s kind of what your brain does when you have a dissociative disorder is your brain floods itself so you don’t remember what’s happening; it’s a painkiller. But, what happens. when it becomes a disorder is when it starts activating in times when it’s necessary. It becomes an issue where you’re just blanking out, unnecessarily. I have this memory of being in fifth or sixth grade. We’re about to end class, we’re kind of packed up. Then it’s just jump cut to walking down the hallway to my next class with my classmates. I’m like, how the hell did I get here? I don’t even remember and I don’t even know why my brain would want to dissociate during that time. It’s a really scary thought to think that if people know that you’re going to forget things, depending on how stressed out you are, that you will just forget it ever happened. That’s one of the scary things, for me is I have Vague memories and certainly like physical memories of things happening to me that I can’t remember happening chronologically. I couldn’t tell you when it happened. I couldn’t tell you where it happened or who did it. But, there’s certain things with my body that show something that happened, but I can’t remember a thing about it.

Amanda: Basically physical flashbacks?

Elianna: Yeah. Well, one time I had a boss snap and throw a chandelier at me.��

Amanda: Hope you reported them.��

Elianna: I did report them and it was a time, but while I was outside crying. I remember getting gripped by my forearms and throttled, or the feeling of like a shoe tread on my face. There’s certain times where other parts of my body will just be really uncomfortable, content warning sexual abuse, where my breasts will feel really uncomfortable and I went to pelvic PT, there is scar tissue in my body that doesn’t make sense for normal behavior. So, something happened to me and I don’t remember it happening. It’s scary to think that this is definitely a thing of where if someone with nefarious intentions knows that you will forget things, if it’s just stressful enough, that they can just get away with things. I think that’s should be the depiction of this isn’t someone burying their guilt, it’s more so people burying something awful that happened to them. Your brain giving you the peace to go about your life; not have a clear memory of it happening. That’s the relationship with dissociative disorders. It’s not you dealing with guilt, it’s your brain trying to protect you with the tools that it has, so you can hopefully keep moving forward in life with some peace, or a semblance of peace, and not having to live with it.

Amanda: Thank you for sharing, Eliana. Regardless if you remember it happening or not, it wasn’t your fault either way. In my own therapy, with dealing with my own childhood PTSD, there’s one interesting thing about trauma I learned. whatever part of your brain centers around that specific trauma, you don’t age from that. You’re still stuck at that age when it happened. That’s why people still have reactions to that degree when they bring up their specific traumas. you have to delve deep into the inner child part to really resolve that. But, it’s a really intense experience. I’m not saying you should do that, but it’s not surprising to me that; you say you’re an adult and that you should be able to recollect and interact with it. But, the way you process the way you handle it at your own speed, There’s no reason to feel bad about the fact that something from your childhood still traumatizes you to this day. Because your brain buried it to protect you. Now your brain is basically saying, “Why are you trying to resurrect this? It’s dead. It can’t hurt you if it’s dead.”. But, the problem is, with that is, that the brain’s wrong. It’s still hurting you, just in different ways.

Elianna: I understand where you’re coming from and it’s that complication of dealing with the traumatized brain. It’s like being in a haunted house? I love horror and I wish that horror would be more considerate towards people who are different. Because there is something to be said about what is the intended audience of what’s going on. “Rocky Horror Picture Show” is very much an community movie for the queer people. It’s by the gays for the gays. We wouldn’t really want to show this to, someone who isn’t very up to date with queer people considering the content of it and what happens it’s not the most, correct form of presenting queer people, but it’s of the gays, by the gays, for the gays. It’s a very “in community” thing, and that’s the intended audience. There could be something said about the intended audience of horror are people who already know and we’re not trying to be correct in our depiction. We’re just trying to have a heck of a story. But, even then there are horror fans who can tell when something’s being bigoted in a certain way or at least careless with the depiction. There’s the Terrifier series, which is a slasher, blood, guts, gore genre horror series. But, even then the whole thing with Terrifier is it’s by the gore hounds for the gore hounds. It’s still got some side eye from folks in the horror community for being a bit misogynistic in some of the depictions. I think horror allows for some bigotry to happen because it’s all about fear of the unknown and the fear of different and who’s more afraid than a conservative? Who is more afraid of the immigrant, the queer person, disabled person, poor person? So, I think that’s why horror can sometimes still be a space where bigotry persists, because it is a very fear based genre. But, what we’re afraid of and how we depict that is something to keep in mind. It’s like with Ari Aster’s films, Hereditary and Midsommar, there’s people who are physically deformed, someone who’s, disabled and has a presence of their disability. There’s a person with bipolar disorder who kills themselves and takes their parents with them. The disabled person in Hereditary, the Girl; the reason she’s disabled is because she was a failed demonic possession, which isn’t a great way to depict disability. There’s a very heavily, deformed person in Midsommar, who’s the result of a lot of inbreeding and this is supposed to be a showing of how the place is wrong. There’s a use of disability and people with deformed features as a sign of villainy and evil, which we shouldn’t be doing this.

Amanda: Would you say that you’ve seen Media kind of portray dissociative disorders in a positive light? Or at least get the symptoms or what the lifestyle of living with the condition is like.

Elianna: Not as far as I’m aware. I know that there are certain characters that have dissociative disorders or have alters, but it’s wishy washy of whether they’re dipping more into schizophrenia. I know that Moon Knight has a character with a dissociative disorder, but it’s fantastical. So, we’re not the genre of how based in reality we’re gonna be and how we’ll play around with it, because with blind people being given like soothsayer or other kind of powers. But, that’s within the realm of possibility for more fantastical series of Avatar The Last Airbender who can see by feeling the earth or there’s daredevil with his really strong hearing. He’s able to be a superhero even though he’s blind and there’s psychic blind people or something. How blind people would feel about these depictions is not going to be a monolith. They’re going to have different levels per person of what would be acceptable or not. Dissociative disorders are different per person. There’s a general thing depending on what level of dissociative disorder you have. So, I would not personally say at this time that there’s been, as far as I’ve seen, a good dissociative disorder depiction. There’s a lot of content out there, so maybe there is somewhere. But, I’m just personally not aware of it.

Positive Representations and Personal Stories

Amanda: I actually did want to bring up a positive dissociative character that, at least I’ve seen in media. Have you heard of Total Drama Island?

Elianna: Yeah. I remember Total Drama Island.

Amanda: Okay, I forget what season this was, but there was a genuine character with DID, called Mike, where he did have different alters. It wasn’t flat out, called DID, but there were a lot of scenes where you actually went into his mind and met all these different alters, the evil one took over for a while. All the altars worked together to defeat the evil altar. I don’t know if that was a good representation or not, but I will say that it was a really good character. His interactions were pretty solid and no one really treated him any differently except for Duncan who was afraid of the evil altar. But, that’s ’cause he met the altar while they were in juvie together.

Elianna: I think it’s a trope to have the evil altar thing. That’s my own personal nitpicks 

Amanda: Well, I think it might have just been for the plot line, because it was more interesting for the evil altar to take over. At least, that’s my argument. It wasn’t just the evil altar that was represented. It was the main one, I don’t really know what you would call that, and a bunch of others.

Elianna: It’s just a personal nitpick for me that we’re going to have. The evil altar or something like that, and then people with altars. Usually aren’t aware that they have alters. It’s not like there’s some kind of conference in the brain.��

Amanda: Well, actually, people with DID are aware of that. I don’t know, a lot of people with DID I’ve met are pretty aware of their alters. There’s clear communication between the alters.

Elianna: It varies per person. Sometimes you don’t know, and sometimes you do.��

Amanda: At least to me, I’ve seen that’s more common than not. That’s why I thought Mike’s representation on Total Drama Island was pretty solid. To say it wasn’t a good representation based on that one plot, that one decision the writers made, I think that’s kind of unfair, to be honest.

Elianna: Oh, no! The whole thing is my own personal taste. It’s just kind of annoying to see it. I don’t want to say that this is causing harm. It just feels a little tropey to me that we’re going to have the evil altar. but, I don’t want to say that this causes harm or something.

Amanda: Well, the thing of it is, the evil altars do cause harm to the people who have them, though.

Elianna: Then we need to ask the question of how many people with dissociative disorder have an evil alter.��

Amanda: It depends on the DID person. But, I personally know at least two people that do have evil altars, and they are really freakin’ dangerous. That’s absolutely not something made up. That can happen. DID can’t be fixed with drugs, at least as far as I’m aware, because the neural networks are just different for how that’s happening.

Elianna: Yeah, it’s not something you can really take medication for.��

Amanda: I’m not saying whoever listens to this, and if you have DID, go out and get medicated, talk to your psychiatrist or your medical provider. But, as far as I know, with people I’ve met, that doesn’t work. Again, not official medical advice, just disclaimer there.��

Elianna: Yeah, everyone’s going to have different limits of what they personally will sit through or not. I know that there’s quite a number of trans women who really do not vibe with Rocky Horror. There’s going to be so many different people who have disorders. I think the solution is having more depictions, and I would personally like to see someone who has a dissociative disorder that really goes into this is my brain trying to protect itself, kind of depiction. So, I don’t have altars as far as I’m aware. I’m on the lower level of the disorder and then the different ways that your disorders can interact with each other. So, because of my dissociative disorder, in order to process certain things, I’ll need to take an opioid blocker. But, also, the level of opioids that are produced in my brain helps manage my ADHD. I’m tempted to write it myself; writing characters who have disorders and it’s not about them being antagonistic. It’s more focusing on this is my brain trying to protect itself from things and how, going through life, just not remembering things or phasing out and jump cutting and not knowing what happened. Sometimes it’s fine and sometimes needing to have that trust with the people around you.

Advice for Writers on Depicting Mental Health

Amanda: So, what do you want to say to writers of any medium about using dissociative disorders?

Elianna: Even with schizophrenia, it feels like the new acceptable monster to use. This was definitely a thing that was certainly used with trans women in horror or trans adjacent people. There’s been a lot of melding of a dissociative disorder and trans panic. There was a movie with Michael Keene where Michael would have a trans alter who was killing people out of jealousy. I just wish that writers would see people with disorders as people and not just the disorder, which is the issue. This disorder is here because we’ve experienced something, but I don’t want that to be used as a cheap justification for all the villainy that’s done. That’s been one of my general gripes with how villains have been written. They are given an abuse background, but they’re never really allowed to grow from that abuse. I’m really tired of seeing the redemption by death thing. I want to see more thoughtful depictions of like, “here’s a person who dealt with pain, and now this is their brain helping them deal with that”, or being schizophrenic and how it can be scary depending on what your brain is telling you. But, it’s not always scary. Sometimes it’s fine. It’s nice and the medications that you take for schizoaffective disorders can be very hard on the body. I know people with schizoaffective disorders will take up cigarettes or marijuana because that helps them with their side effects. We have so much research now to see what’s going on with people with these various disorders, and we can take a much more compassionate, move with it. Once again, I want to ask these writers to watch Unsane and realize there is a level of not being able to trust yourself and wondering if your perception of what’s happening is real or not. But, it’s also scary to not be able to do things for yourself. Stop making us villains for just a little bit, please. I’m not saying you can’t ever write a villain, but it would be nice if he didn’t 

Amanda: I’d like to say to writers, at least going back to the autism thing just a little bit, that if you’re going to write an autistic character, actually talk to people in the community. Just look to characters like Moss from IBT Crowd, or Luz from Owl House. Just notice how they talk to people and how they focus on specific topics or special interests. See that they’re more than just, like you said, “Their jobs”. They’re more than that. They can actually have relationships with people. Even if they don’t always go well, like with House. He still values those connections. He still values his friendship. He basically killed his entire career, quite literally, to be with Wilson the last few months of his life. That’s how much he values people. I want you to talk to people in the autistic community, not just people who are verbal, talk to people who are non verbal, who have to use a keyboard or sign language to communicate. We’re human. It’s like you said, “we’re more than a condition.”.

Elianna: I am not an animal. I am a human being.

Amanda: To have characters that have our conditions; whether it’s autism, ADHD, or dissociative disorders, it’s pretty superficial, and we can tell immediately what you’re doing. It’s not lost on us. We can tell when a character is genuine and when a character is basically here to say, “hey, we’re inclusive, we’re progressive”, when that tells me you’re not. That’s another thing that’s pretty toxic about woke and progressive writing. You do have these superficial characters for the sake of saying a show is, woke, liberal, whatever you want to call it. I’m like, no, that tells me you have a lot of internal misogyny, transphobia, or whatever it is against this character that you’re horribly misrepresenting.��

Elianna: Like you can tell when a gay character was written by a straight person versus if a gay character was written by a gay person. For non queer people writing queer characters where they need to adhere to normalcy in a certain way. But, then if you watch a show or anything that was made by gay people, there’s a certain “community homophobia”, I can’t really think of any other way to put it. People who live in the community and are annoyed by other people. It’s like, “oh yeah, is this a stereotype? Sure, but it’s an accurate one”, because I’ve been in the community and I know who these people are.

Amanda: A show on FX for a while actually focused on the trans women community in the 80s, this was when the HIV epidemic was most prevalent. It was heartbreaking. I talked to my wife about it and she was like, “yeah, this was real.”. So, that was pretty eye opening. I’m not saying all of it was accurate, but you can tell that the writers are genuinely in the queer community, because they didn’t hold back on the struggles these women went through. They didn’t hold back on the HIV stigma on the fact that a lot of these characters would end up dying from this disease, or I think one of the characters was murdered off screen, I forget which one.��

Elianna: Candy. Yeah.

Amanda: Yeah, yeah. Candy. That was heartbreaking just because of the way it happened.

Elianna: Well, that was based off of, I think, real experiences. But, if you have ever seen Paris is burning, I think her name was Venus, was the real person’s name who was doing sex work and then murdered by John because she’s trans. They’re not going to look into who killed her.

Amanda: Not to mention, I feel like trans, to me, are arguably at the most of risk. Because they’re going to get a lot of misogynistic men who don’t want to admit they’re gay, and they’re seeking out trans women to validate that. Stop pushing your internal homophobia and transphobia on these women. They don’t deserve that. Recently, I was in Fred Meyer and, I don’t know why but, I got into this conversation with this older guy who was hanging out on some display furniture. He brought up this actor that used to play James Bond back in the 60s, I think it was the first one. He said that he was this beautiful man, and I’m like, “I’ll just take your word for it, I’m into women.”. He’s like, “oh, you’re into women? Are you married to a woman?”. I’m like, “yeah.”. He’s like, “well, I don’t judge.”. That’s good, because my marriage is nothing to judge. It’s just comments like that, where it’s that internal misogyny and homophobia. I’m not sure if it’s a heterosexual thing or not, but in what world do you think that’s actually okay to say? Would you say that about a hetero couple?

Elianna: Part of it is they usually don’t see queer people, so they don’t know how to act or it’s not fully normalized to them yet. They’re a little confused, but they have the spirit, I think is how to say it.��

Amanda: No, I did not get that at all from people like that. I think that’s just plain blank internal homophobia. Again, I have no idea why I get involved in these conversations, they just kind of happen.��

Closing Thoughts and Reflections

Amanda: Are there any closing statements you would like to make? 

Elianna: At least for horror writers, I would say, think about if you’re bringing with you any old bigotry. This is even still a thing with Romani people that still gets brought up. So, there’s this game called The Quarry, it’s a horror game. But, they’re still doing old G slur women, has cursed people with something, there’s this paranormal infection that branches from her and from her family, and there’s no cure for it. Like there is for the people they infect. That source of the infection needs to be destroyed. There is no curing it. So, it’s like asking yourself if you’re bringing in with you certain bigotries. I would definitely ask people who are into horror of like, what is being said here? Who is the villain and why?

Amanda: Mine would just be what I said before, where you just talk to people in the autistic community, ADHD community, people with schizophrenia, bipolar, other dissociative disorders; just talk to us. It’s like Eliana said here, “don’t make us our disease, make us real people”. Show us that, and show the wider audience, or the general public, that we’re real people. So, thank you Eliana for this amazing conversation. Thank you for sharing and disclosing your experiences. I really think you should go into filmmaking if you haven’t considered it already. I think you’d be amazing.

Elianna: Thank you.

Amanda: I really hope you join me for another conversation and thank you again for joining me today.

Elianna: Yeah, looking forward to it. Thank you for having me.��

Amanda: Thank you for listening to today’s Let’s Talk Autism episode. I hope you found the topic as eye opening as I did when discussing it with Eliana. It forced me to confront my own prejudices and assumptions I have about the homeless population and how media portrayal of mental illness has contributed to them. Conditions like bipolar and schizophrenia remain widely misunderstood and stigmatized with the media continuously contributing to it. As Eliana mentioned, there are not many positive examples of dissociative disorders, with Split being one of the first examples. I want the audience to walk away with a sense of reflection on their own perception of mental illness and how the media may have influenced it. Like autism, people with dissociative disorders are more than their condition, and their needs will vary between people. Thank you for listening, and I hope you tune in for the next episode.��

Asher: Thank you for listening to Let’s Talk! ����ֱ��’s broadcast about disability culture. Find more information and resources concerning this episode and others at . This episode was produced by the Let’s Talk Podcast Collective as a collaborative effort between students, the Accessible Education and Disability Resource Department, and the PCC Multimedia Department. We air new episodes on our home website, our Spotify channel, X Ray 91.1 FM and 107.1 FM and KBOO Radio 90.7 FM.

Episode Transcript

Transcript edited by Ricardo Bravo

Introduction to Let’s Talk

Asher: You’re listening to Let’s Talk. Let’s Talk is a digital space for students ����ֱ�� experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the opinions or positions of ����ֱ��, PCC Foundation, or our community partners. Be broadcast on our home website, , on Spotify, on X-Ray 91.1 FM and 107.1 FM, and KBOO community radio 90.7 FM.

Meet the Guests: Mackenzie and Amanda

Amanda: Thank you for joining me on today’s podcast, Mackenzie. I really am looking forward to this conversation and I’m hoping we’ll have a great time like last time.

Mackenzie: Thank you for having me, Amanda. I look forward to this conversation as well.

Amanda: I felt like I needed to go into that weird intro mode, even though we’re not even doing a formal intro. I don’t know why I did that.

Mackenzie: It’s okay. I loved your intros by the way the ones you reported on your own. I think that’s a perfect way to go about it if we need to. It is hard to get it going when it is a formal conversation.

Amanda: Yeah, totally.��

Mackenzie’s Journey with ADHD and Autism

Amanda: So I guess to start off I’m just gonna go ahead and ask for introductions, like what’s your name, preferred pronouns, major slash occupation, whether you have ADHD, Autism, or both, and how long ago you were diagnosed.

Mackenzie: Hi, I’m Mackenzie, my pronouns are they/them. I am a disabled student ����ֱ�� in the ASL English interpreting program. I’m also working towards a Deaf cultural studies certificate. I also work as a student accessibility advocate for the Office of Accessible and Disability Resources. And I am a membership coordinator for Delta Alpha Pi, It’s an honor society for students with disabilities. PCC adopted this chapter a couple years ago so it’s still very new so you don’t know about it and if you’re interested in getting involved, please let me know. We are inducting new members very soon. So I just wanted to throw that out there because it isn’t very good. In terms of ADHD and autism, I was diagnosed with ADHD at age 19. I have not been officially diagnosed with autism, but it has been something I have been actively exploring, with my medical and mental health providers and doing a lot of self research and it’s something that I identify with. That’s why I’m also on here today to talk about that journey to coming to this place.

Amanda: Thank you.��

Amanda’s Experience with Autism

Amanda: As for me, my name is Amanda. I use she/her pronouns. I’m finishing up an animal science degree at Oregon State with a pre veterinary option, and I’m planning to apply to vet school next year. Hopefully I get in this time. And I was actually just diagnosed with Autism at age 31, so my diagnosis was very recent.I’m not a part of, like, the Alpha Delta Pi, I’m sorry if I said that wrong.��

Mackenzie: Alpha Pi, yeah.

Amanda: I see it heavily advertised on PCC’s website, but I’ve never really given it much thought. I just don’t have the time or mental space for it, to be honest, kind of mirroring what Mackenzie said, for anyone who’s interested, check them out.

Mackenzie: On the topic of how I got involved with the student advocacy for disabled students, it actually started with Delta Alpha Pi randomly showed up to a meeting because I had talked about it and I had gotten emails about it and, all of a sudden I was elected, I put my name in the, ring to be a part of the executive board this past year. That’s how I got into student advocacy work. So it’s been an amazing opportunity to get connected with other disabled students. Cause that’s something I felt very lack of connection and opportunity for ����ֱ��. So I really am passionate about creating community and more opportunities for  students to connect and be involved. I wouldn’t be here today if it hadn’t been for Delta Alpha Pi and it was just a very random occurrence. So I definitely want to spread the word because I do think it’s important for disabled students to be honored and recognized. And even if you aren’t disabled and passionate about disability advocacy you’re welcome to come to meetings, and there are criteria for joining but. You can come even if you’re working towards membership. It’s a very welcoming space.

Amanda: I was just recruited randomly into student advocacy by one of the managers. So, going back to the conversation, I apologize.��

The Role of Gender in ADHD and Autism

Amanda: How would you say your assigned gender at birth influenced your ADHD diagnosis?

Mackenzie: It’s a hard question to answer. I feel like a lot of these questions today are difficult to answer because it is hard to separate the different pieces of your identity, right? There’s that concept of intersectionality. Everything kind of overlaps into one experience. You can’t really separate those pieces out, but coming into these diagnoses over the years has really helped me feel a lot more at home and comfortable in myself and my experience and able to express that to the world. So I think growing up, I’ve talked about this a lot of being high masking and given that assigned gender at birth, which for me was female. The world just puts all these expectations on you and you’re spoon fed all these things that you’re supposed to do and supposed to look like and supposed to be. As an autistic person growing up with that, I think there was a lot of comfort, to some degree, in staying in that space of. Okay, these people are telling me I’m a woman, right? Or a girl. And I need to fit into that in order to be accepted by the world. A lot of autistic people have very black and white thinking and need very binary sort of rules to some degree, just to keep themselves safe because there’s so much to navigate in the world. I think there was a lot of safety in that, even though I remember having. These conversations with myself about gender as young as three years old, like as long as I can remember. I wanted to be one of the boys, but I also wanted to be girly. I just didn’t really want to be either. I didn’t want to have these expectations put on me and I didn’t think that there was a reason for it. But, the world reinforces that of what is acceptable and what is not. I also have been discussing a lot about, puberty lately and just how traumatic puberty is for most people, especially those that have any sort of gender dysphoria, like, issues with their assigned gender, I’ve been reflecting on that period of time a lot because that’s when, most of my mental health symptoms started for me and where things really started to take a turn and just in general that time of my life was very traumatic. It really does have to do with the fact that I didn’t identify with the expectation and the rules of what was expected of women and females in our society. So when puberty happened, all of a sudden my body is now changing. I have to fit into this thing. I have to find a way to fit into this way of being. It just led to a lot of issues. I was diagnosed with PMDD, which is extremely debilitating. It’s so hard to go through those hormone cycles every month and being extremely suicidal. It irritates all of my sensory sensitivities. It takes away my brain function. Activates a lot of my chronic health issues. And to constantly have to go through these ups and downs every month, it’s extremely hard to just do anything. And when you do identify as nonbinary and you still have to deal with that every month. It really activates a lot of gender dysphoria as well. In general, assigned gender at birth in relation to diagnoses such as autism, ADHD, can lead to a lot of feelings of being stuck and not really knowing what to do.��

Navigating Gender Identity and Mental Health

Mackenzie: For me coming out as queer nonbinary happened before I started. Discussing Autism and that feeling of coming to home within myself, trusting my experience, trusting my feelings. That really led me to the place of digging deeper into my chronic health issues and making that connection to my mental health issues. With Autism and then also only seeking out providers that offer gender affirming care and when you’re talking with providers making sure that they do respect your gender identity and whatever diagnoses that you have. If you ever feel like you leave those appointments and your gut is just like. Ooh, I feel really disrespected. Then get out of there because it’s really important to have that connection to those pieces of your identity, especially when it comes to medical health care and mental health care.

Amanda: Thank you. I feel like you actually answered like number three with that too. I didn’t realize there was a lot of crossover with these questions when I came up with them. Because they’re separate in my mind, but hearing answers to them. You can answer multiple questions at once. There’s no reason not to, to add my own two cents and just respond to what you said, my assigned gender at birth. Definitely. I’m a cis, binary female, so it definitely did affect my autism process. I know I’ve talked about this on previous podcast episodes, it’s because Autism and ADHD for the longest time were just thought of as a boy specific thing, or very rarely happened in girls, unless if it really severe, that it’s like, I was just not diagnosed when I should have been, despite my mother taking me to three different experts. I’m just never gonna forget that and just how they dismissed her and me. How they screwed over not my entire childhood, but really the huge majority of it. Let’s all be honest there. I just know if I had been born as a boy, I definitely would have been diagnosed probably before I was in kindergarten, based on the stories I’ve heard about my childhood. In terms of when I started puberty, I’m just going to respond a little bit to what you said, cause I was kind of going in and out there for a bit as you talked enough, sorry.��

Mackenzie: Go for it.

Amanda: Things I do remember you said, I remember being annoyed when puberty started for me. My breast development was fair, I don’t know. I want to say moderate, not overly quick, not really sudden, not too slow. I remember being really annoyed when periods started because it’s like, great, I have to deal with this now. One thing I really do love about how my mom raised me and my sister is the fact that she never raised us with gender expectations. I promise you if I had been born a boy, or if I had a brother. I would have had the same chores regardless. She never discriminated based on gender, we would have had the same responsibilities regardless. And she never raised me and my sister to be housewives or career women. She wanted us to explore what we wanted and what we were passionate about. And that’s just something I think my mom did a really good job on. So I never grew up with those gender expectations or trying to fit into a box just because I was already ostracized by most of my peers and authority figures anyways, that I just never felt those expectations. Or maybe they were there and I just didn’t care. I just never was expected by them the same way. A lot of people were, just because of my general indifference towards them. I think you kind of answered this already, but if you wanted to add anything. How would you say your gender identity influences your optimism or ADHD? Do you feel like people take your condition more or less seriously because of your gender identity?

Mackenzie: This one goes kind of back to what I was talking about with the aspects of your identity being hard to separate that piece of intersectionality. There really are so many aspects to everybody’s individual identity and how they identify culturally and personally in the world. It’s really hard to separate those experiences from each other and not just the experience of the person as a whole. There’s a ton of layers to that. Let me just read the question again.��

Amanda: I can answer the question first if you want some time.

Mackenzie: Okay, hold on. Okay, got it. I think a big piece to my gender identity and coming into home with that was I think a lot of people also associate gender identity with gender expression and they don’t have to correlate their different entities and so I think the biggest piece for me was. I don’t try towards any sort of gender expression. I come into a place where I will do what I’m comfortable doing, comfortable wearing. Just be myself as authentically as possible and I’ve noticed out in the world, even when I do. I’m feeling very, just, I keep forgetting the word I’m looking for. Nonbinary, like what’s the word where you’re feeling very like neither feminine nor masculine.��

Amanda: I’m not sure if this is the right word, but the word that comes to mind is ambiguous.

Mackenzie: Yeah, sure. I think there’s a very similar word in my mind that I’m looking for. But yeah, when I’m feeling very ambiguous and I go out into the world looking that way too. People are still so quick to gender me as female and it’s kind of frustrating to me in those moments. I don’t know, I don’t know why, but it just is. And so, along those lines, I feel like when you identify as nonbinary, people are just going to question your experiences no matter what. They are like, you don’t really know who you are. Everything is kind of like a question. I’m not saying that from the perspective of the queer community and people that identify as nonbinary. I’m talking more about the neurotypical, average people who haven’t reflected on their experiences with the world being a spectrum. So In general, things are taken less seriously with people that don’t understand gender identity, gender expression, ADHD, Autism, chronic health conditions, disability, and all of the overlapping intersections of identity. Yeah, I think that answers the question right.

Amanda: Yeah like I said, two and three were pretty similar so sorry about that. I’m very indifferent to my gender identity because I just see it as I happen to inherit enough biomarkers that I have secondary female characteristics. I just never cared that I’m female. So I identify as female but I also don’t feel like I’m not female. And I’m not sure where this comes from but I’ve never had problems separating different parts of my identity at all. I’m really proud of my autism identity. I talk about that a lot more than mainly leaning towards women or the fact that I’m female. Like the Autism thing is the one I’m the most passionate about. Other parts of me I’ve mentioned, it’s like, they’re a part of me. I’m not ashamed of them but I don’t feel the need to shout them across the world. And I’m not sure if that comes from the fact that I don’t need to justify myself in terms of my gender identity like you do. Or I don’t feel like I need to get into arguments with people and it’s not like I’m trying to say you’re argumentative. But I think that’s where it comes from because people are just used to seeing gender as a binary thing in a wider context. You and other nonbinary people are probably in a position where you have to essentially justify your existence, if that doesn’t sound too terrible.

Mackenzie: No, I’m happy that you express that because I think to some degree I can relate to what you said as well. There is a ton of care deep down about how I display it to the world, how people perceive me, and also about getting it right because I know there’s a ton of people out there who are going to get it wrong. It’s taken me a lot of years to come to a place of accepting my body in taking up space in this world as it is. And not wanting to change my body per se, to accept all of the experiences that happen to it. So it’s very hard to deny my anatomy and what it does, right? Like I do have female anatomy and a lot of things that I experience are related to that. So it’s hard to separate my experience from that. In terms of correcting people when they misgender me, I often don’t do that. That really comes down to a lot of rejection, just sensitive dysphoria, and I don’t think I should always have to defend myself. Like I said, I know who I am and I feel comfortable in myself. So it doesn’t matter that people do misgender me, but when I am gendered correctly, it just feels so amazing. It feels great when people finally do respect you or even ask you about it. I try not to make a big deal about my experience and how other people relate to that experience. It doesn’t really matter what other people think. As long as I feel comfortable in my existence and gloss between the thoughts, but go ahead.��

Amanda: Yeah, I kind of relate to the next question. I wonder what I’m going to do with these because they’re so similar. I’m just going to interweave them into your responses and my responses. That actually makes for a better conversation.

Mackenzie: Totally. And if there’s a little piece in those questions where you want to add to the conversation.

Amanda: Yeah.

Mackenzie: That direction, go ahead and put those pieces in there.

Amanda: All right, So, you mentioned that you were seeking an Autism diagnosis or you’re heavily researching it.��

Seeking an Autism Diagnosis

Amanda: Are you already anticipating your assigned gender at birth is going to influence how doctors, psychiatrists, or other professionals are going to treat you?

Mackenzie: That’s a good question. And you know, at the beginning of the year, I was really trying to seek out resources for a formal assessment. I’m at this place in my life where I’m not sure if I will do that formal assessment yet. Just because I found mental health care providers that also identify as queer, autistic, ADHD, and feel very privileged and lucky to have Oregon health plan cover that care for me every week. Some things that my doctor has told me this past year really kind of questioned whether or not I still want to do that because it is a huge stressor. It’s a big financial cost. Even if you can find resources, there’s just a lot of work that goes into making that happen. One of the things my doctor said was, she just doesn’t doubt that this is a diagnosis for me. Based on my experiences from young childhood to now, both in regards to physical health and the experience of myself and my brain functioning, however you want to describe it. Is that you just have to learn to live well with Autism? A big part of my journey, especially since our last conversation has been researching how to do that and how to learn to live well with autism in this world that is not set up to support us. I very much come to understand a lot of my experiences and have been able to dig into a lot of those autistic pieces. Experience and understand how to be myself and honor those aspects of my identity without shame. That was a big thing too, like, if you need to have a meltdown, if you need to stimulate and pace around. Do what you need to do to regulate yourself, to not have shame about it and do it because it does help regulate you. And I think that the nervous system is a big part of health. It is with anybody. We live in a very, very high stress world. Especially when you’re living with Autism, that constant activation of your nervous system, your peripheral nervous system? I always forget them.

Amanda: If you’re talking about the sensory input, then yeah, that would be peripheral. You’re right.

Mackenzie: Yeah. During spring break, I read a book on masking Autism and if anybody out there is. Even autistic or you’re thinking you might be autistic and you’ve done a lot of research. Like I’ve done a lot of assessments in different periods of my life, just out of curiosity, like the online assessments. And I’ve never gotten a result, even if I answer the questions differently that were neurotypical. That’s another piece too, the results of those assessments have very much been yes, you probably are autistic.

Amanda: You mind if I’d jump in here to add my two cents and maybe that’ll help you.

Mackenzie: Yes, please.

Amanda: Yeah, like I said, I’m already diagnosed with autism and obviously can’t comment on the diagnostic journey. I will say that my journey was very prompt. I literally just went to therapy a couple of times. I think it was just three sessions in and my therapist finally asked me: Are you diagnosed with autism? and I was like: well, no, but I suspect I am. And my mother in law has definitely brought that up. She’s like: you need to get diagnosed. I’m certain you’re autistic but you need an official diagnosis. And I think I mentioned this to you where I went to three appointments and not one because that was just standard procedure. She said she immediately knew I was autistic so I’m not sure what it is about me. But I don’t wear a mask at all. I never have. I don’t have the patience for it or the mental energy to do it. We just have different responses and coping mechanisms. And my responses were to be indifferent or fight.

Mackenzie: Mm-hmm

Amanda: It gets frustrating though. Cause it’s like, I have to almost spell words out just to get my point across. I’m not sure if it’s just a miscommunication or if I’m not being clear with what I’m saying. But I’ve been in so many conversations where I try to explain my needs and people just don’t get it. So I find, like a tech, works really well when trying to explain my needs and how to accommodate me. One thing I do is that I think of real life examples to illustrate a struggle. I think I mentioned this one to you where it’s like climbing up an ice mountain with a pickaxe. I’m not a rock climber.

Mackenzie: I think that’s right, I don’t know.

Amanda: They look like pickaxes. I don’t know what they’re actually called. Point is, you’re trying to climb up a sheet of ice on a mountain with very little equipment, and you have no backup, and basically someone is up there just telling you to hurry up. I’ve compared meltdowns to internal volcanoes. For whatever reason, when you use extreme illustrations like that, people at the very least do tend to be more receptive and real looks of realization dawn on them. Recently, I explained the dehumanizing process of DAS at Oregon State and how frustrating and traumatizing it was seeking accommodations from them. And when I finally explained to someone, this would be me telling you to turn off your hearing aids because I think you can read my lips well enough. Or I think you should be able to sign.

Mackenzie: Yeah.

Amanda: I know that sounds horrible, especially to you, and I apologize about that because I know you’re hard of hearing and I would never say this to you and I would never assume this about you. But it’s just that dismissive. I think I’m doing you a favor by forcing you to come to my level. When you put something like that into context where it applies to them, that look of realization where they’re just realized how ableist they’re being towards you finally switches on.

Mackenzie: I had written about this recently. It’s not that I’m asking you to completely change everything for me. I am just asking you to consider that people get to different places in different ways. There has to be some understanding of that. It’s not about doing something differently. It’s about, I can’t remember what I wrote. But, you really do have to illustrate the struggle for people. That’s the goal, right? To be just like everybody else, to survive in this world. When you don’t have the tools that you need, it’s impossible to get there. And I don’t think that there is this one way of living. And because anybody else falls outside of that, they’re not welcome. You talked about how it’s really hard for you to do math. I’ve always been a very cognitive person, so I’ve been able to explain my way out of things very well. Even though it’s not true to my experience. And that was the process of going through mental health care for the past 10 years. Someone pointed it out to me a few years ago. And I was like, you’re right. I will talk and cognate myself out of my body experiences. I have never been connected to my body. And I think that ties a lot into gender dysphoria as well, but I’ve always felt this huge disconnection to my body. I’ve always wanted to be invisible because the experience of my body in the world did not match my internal experience. And it’s always been confusing and making it really hard to navigate the world. So learning how to be present in my body, honoring whatever it’s asking for and understanding that it’s probably right because my brain likes to talk me out of anything. So, try and listen to that because when you do ignore your body, it’s literally screaming at you and you have to shut down for a few days. Honor whatever it is that you’re needing and then you can come back into the world and be able to navigate. But when you’re asking me to mask and hide the things that I am needing to do to regulate myself, it takes extraordinary amounts of energy and just everything out of me to be able to do that. When I’m constantly giving that away to other people, I’m left with nothing for myself and I don’t get to engage in my special interests. I don’t get to feed those parts of me that make me feel whole. In the end, what good is that doing? I feel like I do have a lot to offer to the world and I am a valuable person, but when I’m not able to feed those good parts. I just have to show up and be this very, small portion of myself. Survival mode. I’m a capitalist and a high needs person. I have to have a roof over my head, food and things that support my sensory needs. So at the end of the day, I have to give myself up for survival mode and then I’m constantly fighting for my health. It’s just a vicious cycle so yeah.

Amanda: I totally hear you. Alright, so number five actually is a little different than the last few questions.�� 

Intersection of Autism, ADHD, and Gender Identity

Amanda: How would you say your Autism or ADHD intersects with your gender identity, and would you also say that your ADHD and potential Autism become more in touch with your gender identity, or would you say it made it more difficult?

Mackenzie: So I think I touched on that a little bit earlier. But I really came into my gender identity first and then came into my autistic identity. It very much relates back to what I mentioned earlier in terms of the black and white thinking and needing to have these rigid ways of navigating the very confusing world. So with the autistic part, It’s very hard when you’ve lived as this female version for many years, and now even though I know that I am non-binary and this is how I want to navigate the world. It can be very hard when you don’t have that framework to pull from what it’s like to exist in the world as that person’s representation. Seeing things throughout your life along the way like, it’s okay to be different. I always tell people about the experience of my family. Growing up, my aunt was lesbian. And I remember being very young and not really understanding that, but not being afraid to ask about it. I remember asking my mom, I was like, is Debbie a boy or a girl? And my mom was like, she’s a girl, but she also dates girls. And thinking that is so cool. I want to be like that, you know what I mean? and just thought my family was accepting of that. I’m like, if I didn’t have that as a young kid, I wouldn’t have discovered that till a little bit later. That acceptance of being yourself and she actually passed, when I was five, but I still think about her. She’s still such a big part of my life like I remember her joy, her smile, and that feeling that she made me feel when I was younger. And I think about representation in general, when we’re not exposed to ways of being that are different from what is most broadly accepted in the world, it’s very hard to know. I first learned about non-binary gender identity and gender expression when I was a freshman in college. And as soon as I heard about it, I was like, that explains my experience growing up so much. I would remember feeling guilty and I was like, I don’t want to claim that as my identity because I don’t know. I just don’t know a lot about it. So then I spent the next 10 years doing this internal reflection and self analysis, and realizing that I am worthy of holding that identity and I am worthy of community. That is still hard to navigate. Even though I identify as non-binary, there’s still a lot I have to learn. I also came to this point of understanding with myself during COVID when I was very isolated and I got in touch with myself. So, it’s been very hard to get connected with the community since COVID. That’s also something that isn’t talked about a lot, that social anxiety of navigating new communities, new spaces. And when you are chronically ill and constantly worried about getting COVID again because of how much that did impact my life, how much it aggravated a lot of my chronic health and added to the burden that I have to deal with every day. It’s hard to find community when you’re constantly worried about everything, and the rules of the world are always changing and that can be another source of social anxiety.��

Amanda: I’m sorry to cut you off, but I just really have to comment on something. When you brought up your aunt, and how you were exposed to a lesbian relationship when you were a kid, I just really want to respond before I lose the thought, I’m sorry.

Mackenzie: Interrupt me whenever, or otherwise I’ll just keep going on and on.

Amanda: I feel bad, I’m sorry. I go on and on too, so feel free to interrupt me as well. To be honest, in terms of my sexual preferences or sexuality I’m kind of reluctant to actually identify because I just don’t care. I lean mainly towards women, but I didn’t know that for the longest time. I don’t remember homophobia in my family at all, but the thing is, outside of male female relationships, it wasn’t talked about. No other types of relationships were talked about, so I never knew it was a possibility of having a crush on a girl throughout my formative years, elementary, middle, and high school. I remember being drawn to girls specifically, but because I was never looking back on it, they probably were crushes. I never thought I even had a crush because I just didn’t find anyone attractive. Or at least the idea of attractiveness that I was presented as a kid. Even with my wife, again, I do mainly lean towards women, but because it was never talked about, that realization never really struck me. There was never this big coming out moment in my family or really anyone. In fact, I think my sister just asked me to confirm at the dinner table one day and yeah, that’s a thing with me. And she’s like, okay, It just isn’t a big deal to me. The end goal is the same when you have a relationship, whether it’s intimacy, whether it’s sex, why does it actually matter?

Mackenzie: Yeah.

Amanda: And I think that’s interesting growing up because I was never exposed to, nonbinary though, in different ways through media. My first exposure to non-binary was, have you heard of the series Cardcaptor Sakura?

Mackenzie: No.

Amanda: Okay, so it’s a clamp manga and anime. There’s this character later on named Ruby who the author point blank states is neither male nor female even though they look female, very female. Even when I was reading that I was like, oh okay, never thought anything of it. Gay relationships were actually introduced to me through anime, yaoi, and I did see yuri as well, but not until I was older. I don’t know why, I just never found them. Not that they were actively hidden from me, maybe they just weren’t as popular in the west. Anyways, the point is, it was never weird to me. Even when I was introduced to it.

Navigating Attraction and Labels

Mackenzie: There’s a couple notes I made in there about never having crushes. I never had crushes growing up and I didn’t really understand why for a very long time. I only had female friends. I just remember being attracted to anybody that was very ambiguous. And if there was ever a question about what someone’s gender would be, I was very attracted to that. And then that is a big piece that had me considering attraction in general and previous relationships I agree with you. I never really cared about labels. It’s such a spectrum of experience. I don’t think there has to be a certain set of roles. Along the way, I’ve most closely identified pansexual, asexual, demisexual, and that spectrum of queerness explains my experience best. But at the same time, it doesn’t matter to me. Life happens as life happens. The obsession with the whole gender thing, same with sexuality. It’s all very funny when you think about it in that way, just let people do what they want to do because that is what being human is. There’s so much cool research about non-binary and gender way beyond our current society that is like we’re just humans and there is so much variance in how that comes about especially with intersex. It just doesn’t make sense to binary everything.

Gender Identity and Neurodivergence

Amanda: How would you say your ADHD does intersect with your gender identity? Would you say it makes it easier or harder?

Mackenzie: Oh yeah.��

Amanda: When I say it, it can mean ADHD or your gender identity, so whichever you feel is more appropriate for the question.

Mackenzie: I think it makes it easier. The more that I am able to feel comfortable in my experience, the more comfortable I am in those other parts of myself and allowing myself to adapt to whatever those parts are needing.��

Amanda: For me, I never questioned my identity in terms of gender, but my Autism. I wouldn’t say it makes my gender identity clearer or more ambiguous, but I would say it’s given me a lot of self confidence and assurance. I can stand my ground in an argument a lot better.

Mackenzie: True, yeah.

Amanda: I can speak for myself more, again, it’s the confidence. I wouldn’t say it has anything to do with gender identity, if I’m being totally honest.

Mackenzie: Totally, I mentioned this as I was reading. Unmasking Autism, the author. I forget their full name, Devin something. Their experience coming into their gender identity and Autism is very similar to mine and I’m sure a lot of people. I think there’s such a huge correlation between that journey for the reason of always feeling different when you are able to work with those pieces of yourself. It becomes easier to be yourself and stand up for yourself and other people. And, yeah,

Amanda: �ٱ�ھ��Ծ��ٱ����.��

Rejection Dysphoria and Imposter Syndrome

Amanda: So, for question six, I feel like we went into this a little bit, but have you ever questioned your autistic or ADHD needs due to the rejection dysphoria or imposter syndrome? 

Mackenzie: Absolutely.

Amanda: Yeah, I’d like to talk about any of that and I think I asked this question. I ended up adding this second part to part question six because of silver and limes, but did you ever experience gender gatekeeping from either cis trans or other communities because of your gender identity? Feel free to break down that question any way you want.

Mackenzie: So what I had written down here about the first part of that question about rejection dysphoria and imposter syndrome. It’s like, when you’re living on the edge of anything, or when you have identities that you’ve been masking for so many years, that just becomes a huge piece. I’ve had these conversations with a lot of people around my hard of hearing identity. ����ֱ�� not feeling accepted into the hearing world, not feeling accepted into the Deaf world and in terms of Autism and ADHD. Then chronic health issues, the disabilities related to chronic health issues, all three of those things very much do this dance in between some days, you know, you’re able to function better than other days. And constantly questioning your experience, the reality and the validity of your experience leads to a lot of imposter syndrome because you do so much to survive and when you’re not able to tend. We might have to come back to that question because I’m losing my articulate ability. In terms of rejection, sensitive dysphoria, it is so debilitating.��

Challenges of Seeking Accommodations

Mackenzie: Like when you’re finally able to speak up about your needs and then have that experience go to absolute s**t! It’s so hard to ever wanna do that again, to ever speak up for yourself and ask for your needs to be met. I’ve talked about that a lot in terms of my heart of hearing identity. That was definitely my first different identity besides being female I guess. As a kid, that was something that was diagnosed for me in first grade and I started receiving accommodations for. So a lot of my experience comes from the fact that anytime I would ask someone to accommodate a hearing need and have that not be respected and experience a lot of bullying, arrogance, and ignorance around it. It made me feel like I always have to mask myself as a hearing person. And even if I don’t understand anything, I work so hard to make sure that I’m understanding people. Most of the time I’ll walk away from an in person interaction and only have about half an understanding of what was really going on. So I’ve always sought out connections with people that are very one on one because it’s a lot less to navigate and it’s a lot easier to engage with someone in that way. But yeah, it’s hard to speak up and talk about your needs when it’s never been a great experience because it’s just traumatic to be quite honest. It goes into your body as a trauma response and it’s extremely debilitating and I remember preparing for this conversation. I had to have accommodations for an entire month. I went non verbal. I did research for three weeks. I was writing all over my mirrors, whiteboards, and notebooks because I have been invalidated so much throughout my life that I wanted to make sure that I was able to say what I needed to say. And even in that moment, I completely blacked out. And I do that in most interactions. I black out and I was sweating. I was red and it shouldn’t have to be this debilitating just to ask for what I need, so anything you want to add about that.

Amanda: Well, first of all, My experience and honestly your experience, just going to D.A.S. dehumanizing process of getting accommodations. Feel free to sign up for that podcast because I feel like you and I will have a lot of interesting tidbits there. It’s basically going to be an entire session of ripping the D&A process and seeking accommodations to shreds.

Mackenzie: Well, not only that, like I’ve talked about this with a few other advocates and leaders as I really want to have this space for people to talk about success stories with access and accommodation. I think it’s important to highlight things that have worked for people or like people that have been really accommodating and what that looks like.��

Amanda: I have success strategies that can actually help people increase the likelihood of getting accommodations beyond paperwork. There actually are specific neurotypical strategies that I’ve discovered and have used and works pretty well for the most part. I can’t promise it’ll work every time. It’s like how to work the neurotypical system against them and to our advantage.��

Mackenzie: Yeah, that’s great. I just think it’s important to highlight those moments. People didn’t have to work so hard to be accommodated. Just having it set up for people that go through different experiences instead of it being a very traumatizing debilitating process to get those differences to be met in the first place. And, I don’t know. I think with neurotypical people, they just don’t know how to do things differently. And it’d be nice to be able to present people with opportunities to read about.

Amanda: To be honest, it goes back to that really toxic mindset of thinking they’re doing us a favor by forcing us to be normal. It really does just come back to that, so that’s why I use literal examples or use a disability they have against them. Like, a lot of people have chronic pain or fatigue. Other conditions that they’re used to being accommodated for. But when I put it into the context of their own condition, that’s when they get light bulbs and that’s when they realize they’re being ableist. You can present as much reading as they want, but to be honest with you, my experience is that it just goes over their heads or they don’t care.

Mackenzie: Yeah.

Amanda: I’m not trying to demoralize you, but I think it’s a lot more direct to just lay it on, this is what you’re doing, stop.

Mackenzie: yeah.

Amanda: And going back to the question about rejection dysphoria or imposter syndrome. I can’t say I’ve ever really experienced a rejection dysphoria. Honestly, but imposter syndrome, again, I don’t think I have ever felt that either because I know who I am. I’m pretty self confident in who I am. I have a lot of self assurance of who I am and my response is just to fight. So if someone tries to question my experience. I’m like, who are you to question my experience? You’re not my body. You’re not my head. You’re either going to do your job by listening to me and providing accommodations, or we’re going to have a problem.

Mackenzie: It’s funny though because my response has always been to run and to fawn. You don’t have the experience throughout your life of those moments when you were able to stand up for yourself. And when it went well, I had sort of mentioned the constant reinforcement of being honest with someone about something or I’m telling them what I need. I’m being vulnerable and talking about my experience and then to be completely invalidated. It makes you never want to talk about it ever again and it’s not fair.

Amanda: Yeah, and I’m not trying to talk about my natural response to make you feel bad. It’s just, growing up, I remember the only times I felt truly powerful and listened to was when I screamed. And forced people to listen to me. I metaphorically got them down to my level, got them by the throat, and just made them listen to me. And that’s when I got results. It didn’t always strictly work, but the situation never got worse. And it definitely got to a point of stability whenever I did that. Sometimes the situation actually did improve. Again, I’m not trying to make you feel bad or anyone else feel bad for their natural responses because those just come from childhood survival techniques. So that’s where my response comes from I guess. Just the fact that the only time I ever really felt powerful was when I did confront someone.

Mackenzie: I’ve done that a lot over the years but it was never verbally. It was always written out. When I feel really frustrated and need to communicate with someone. I would write them a letter explaining my experience and my feelings. It’s always been a good response and very  similar in that way of empowerment. I need that extra time to process things. I’m not always able to do things at the moment. I’ve always had a hard time with words. I figure out what it is that I really want to say, especially when you’re dealing with people that are very defensive. I think a lot of times, especially in regards to autism. It’s with the tone of voice and also, with what you’re actually saying. What I want to say is often not what I mean just because I’m picking from very limited vocab options at the moment. So tone of voice mixed with intention matching the form of what you’re saying. I think writing has always helped me be able to solve those issues. It takes away those aspects that are often misunderstood.

Cultural Perspectives on Gender

Amanda: Yeah, question seven goes into research a little bit about recent trends with the nonbinary community. Thank you. Are you surprised that the community has an increasing number of its members getting diagnosed with autism or ADHD? Why or why not?

Mackenzie: I’m not at all surprised by that. It goes back to something my doctor told me and some reading and research I’ve done on my own. But one reason I started seeking out autism diagnosis was because my doctor had told me that there is such a high correlation between autistic individuals identifying as nonbinary, gender nonconforming, et cetera, Along with a lot of the chronic health issues I’ve been diagnosed with throughout the years. And I was like, okay, that makes a lot of sense. The notes I had done about these questions are things that are already talked about so giving people the language framework and the story to connect to things from a younger age so that people don’t have to discover these things later in their life. For myself, there’s a high correlation between coming into my gender identity and autistic identity as well.

Amanda: For me, I actually did some research on this question. I forget which study this was from or which article but this actually sums up why there are so many people with autism and ADHD who are nonbinary. I said this earlier, we’re just essentially rejected by our peers and authority figures that we’re forced to develop our own survival methods and then it just rejects social norms that don’t work for us. And a lot of times that does go with gender norms or gender rules, whatever you call it and of course we would reject all those BS gender rules. That makes total sense.

Mackenzie: And what’s especially affirming to me is the fact that I have been questioning this as long as I can remember in terms of my own journey with gender identity. The fact that I’ve never wanted to follow the rules in that way. A lot of neurodivergent people experience growing up differently. It primes you for accepting the difference and not wanting to conform to these things and these systems that just don’t make sense that go against the natural order and ways of the world. I like to turn to nature a lot to explain things and to explain how things work obviously. You know, when it’s really stormy and the weather is really intense. That’s just part of the natural world, nobody’s gonna question that. So why do you question when people have moods and things that happen in a similar fashion, like, it just happens. There’s a reason why, but I don’t know. Frame it a lot like when you go against the rules, the laws of nature in general, you’re just setting people up for failure and illness because it just doesn’t make sense to go against it. I guess that’s what I’m saying.

Amanda: Another thing I would say about that is, not just nature horses, but a lot of other cultures actually have more than two gender identities. I think the most well known ones internationally are Thai ladyboys. I forget what the actual term for them is in Thai, but it’s so well known and famous that it was featured in the Hangover movie series.

Mackenzie: Right, I remember that.

Amanda: So many other cultures throughout history have had third genders or even more than three genders. So, I don’t know if it’s specifically a modern Western society thing where only two genders are really that part of the main conversation, or this just stems back to something else, but I don’t know why that’s just so hard to conceptualize because it’s not like more than two genders are unique. In fact, I think it’s actually a lot more common to have more than two genders.

Mackenzie: I’ve been seeing so much about that too. I want to dive into more personal research, but even like pre Nazi Germany. There is a lot of gender research about the spectrum of gender, the experience of gender outside of the binary gender, and how a lot of that research was destroyed in World War II.

Amanda: That’s interesting.

Mackenzie: But I want to do a little more digging and read more about that. In general, but yeah, a lot of indigenous and native cultures, and other cultures outside of American Western modern society regard people outside of these genders and it’s so frustrating and fascinating to me. I’m like, who decided that there was just one story that was the truth throughout our history in America and then, this is the way it is. Let’s hear some other stories because that’s not the only story.

Amanda: Or take into different cultural norms and just accept the fact that this is a concept that has been proven and it’s valid.

Mackenzie: And even before I was diagnosed with ADHD. It makes so much sense why people are diagnosed with this because damn it, I lost my train of thought.

Amanda: It’s okay.

Mackenzie: I know it’s just really frustrating. It happens a lot. I have all these words and thoughts streaming through my head all at one time. And then you go to say it. There’s just nothing. It’s very frustrating. But anyway, what was I talking about?

Amanda: I don’t know. We were talking about Western modern society and how it’s normal for countries outside of that to have three genders. Like I brought up Thailand as an example.

Mackenzie: Oh yeah, that. Okay, so there’s collectivist cultures and then there’s individualist cultures. America is very much an individualist culture but I can’t remember the percentage. I think about 60 or 80 percent of the world’s cultures being collectivist and how that makes a lot more sense. In terms of when people are neurodivergent, it becomes about community, care, and supporting everybody. It’s not about individual success. It’s about collective success. It’s not focused on clock time, it’s on connections between people instead of these rules of the way to do things, professionalism, being on time, and all of these dualist ways. And they’re like, you can’t do this on your own. That means you’re a failure. It’s like, no. I just don’t have the support that I need. And so it becomes a very isolated experience. Then that leads to all this mental health s**t! And in the end, is it really a mental illness? Like I’ve been diagnosed with probably ten or so different mental health diagnoses. It was probably just Autism manifesting itself the whole time and meltdowns, shutdowns. You know, nervous system dysregulation, all this stuff, right? And yeah, I don’t know. It’s frustrating.

Amanda: I’m not going to comment too heavily on other cultures, but I do want to say something about the collective culture. I’m not sure what you mean by collective in this sense, but I will say other cultures I am familiar with, especially in East Asia. They are collective in the sense that they do value society over the individual but that creates a lot of toxicity for people with individualistic needs like Autism and it makes them a lot less likely to accommodate. I have a lot of criticism in America in this conversation obviously but. I will give America credit in the sense that they do at least recognize Autism and that there is at least official recognition for accommodations. ADHD is included in that as well. Whereas if you go to countries like the Netherlands there’s an awareness of Autism, but they’re still like this, not collective. They very much approach accommodations as a blanket method where they just say no, the individual doesn’t matter.

Mackenzie: Got it!

Amanda: At least that was what I personally experienced and heard about when I was in the Netherlands with my wife, but I’m not trying to speak for all of the Netherlands obviously. Or it’s like France, I don’t even think Autism is still very much recognized as just a disability. You’re just an invalid kind of thing. So again, I’m not trying to derail your argument, but there’s a lot of holes in collective society as well as individualistic ones.

Mackenzie: Totally. I also like to say things about that. my worldview is still very small. There’s a lot of reasons why I haven’t been able to go out and experience different cultures and whatnot.��

Amanda: It’s just that there’s different weaknesses in individual versus collective.

Mackenzie: And there always will be.��

Stereotypes and Empathy in Autism

Mackenzie: I think that’s interesting, the piece you mentioned. You know, a common stereotype of Autism is that people are very selfish and only focused on themselves. So I wanted to ask you about your experience with that throughout your life. Do you feel that stereotype is true or what is your argument against that?

Amanda: I guess I’m trying to figure out what you mean by selfish because to me. Human beings, in general, are a selfish species. We just are. Can you provide a little more context before I answer?

Mackenzie: Yeah, there’s just so many stereotypes out there that autistic people are only focused on themselves. Even the sign language signs related to autism are very much related to that sort of internal focus on self and not able to empathize 

Amanda: I wouldn’t say that autistic people are any more selfish than any other human being. It goes back to the fact that there’s a lot of invisible social roles we miss. So we respond in ways people aren’t really expecting us to respond to. In terms of my experiences with that, I just remember getting into a lot of arguments with people about my reactions to tragedy or just situations with breakups or every other personal thing that I’m supposed to have some kind of reaction to. Like, give an example to someone dying. That was a friend of my mom’s or connected to her in some way. My condolences are there but I just don’t have a big emotional reaction to it. I don’t know the person and let’s see. I think I brought this up before with that organization I wanted to volunteer for, but I decided not to because of this interaction. Honestly, I don’t know. This woman was just trying to harass me and I’m like look: I’m autistic. If there was some kind of miscommunication, I said, let’s just talk about it. And she sends me an article about an autistic organization member and this has nothing to do with our conversation. Put on your big girl pants and apologize to me.

Mackenzie: Yeah.

Amanda: It’s just we’re responding in a way that people just aren’t expecting. And to me, the media aspect of autism I would say. The characters I’ve seen are portrayed as selfish. They just react to different things, like Young Sheldon. I think, is a little bit of an exception quite frankly. I think the research writing was terrible on that one, especially because Big Bang went back and forth about whether or not Sheldon was autistic or not. I don’t even think they’ve officially said it or not, they just made him as autistic as possible in Young Sheldon. Which really bugs the crap out of me.

Mackenzie: I don’t remember it ever coming out in shows.

Amanda: What happened was they just leaned into Autism because it was becoming a trend and that really pisses me off when the media does that because that just means it’s a bunch of superficial research probably from Autism speaks.

Mackenzie: Right.

Amanda: So I don’t know if I answered your question but I would say that the stereotype is that we just overreact rather than that we’re selfish. At least that’s my interpretation of it. What people miss a lot of times is the fact that we are trying. We actually are very empathetic and I feel like people don’t really have any empathy towards us.

Mackenzie: I think sometimes empathy can get the best of me. I have to shut down. I’m so sensitive to people living around me that I just adopt and absorb their energy. Then I try to accommodate, then I completely ignore my own needs because I’m so focused on accommodating other people living alone. It definitely helps me with that but I’m learning to communicate my needs which is great. It’s just a funny thing to me because everybody is focused on themselves. Everybody is selfish. And when you do the work to really understand yourself and your experience in the world, it leads you to be such a better community member and able to show up for other people. I’ve never really understood why it’s a bad thing to be selfish and speak up for your needs.��

Amanda: Well, I think it goes back to that compliance thing and it’s kind of funny that Western culture, especially America, is kind of considered individualistic because I think we all operate on a collective mindset. The only evidence you need to see that is in church groups. There’s very much this whole we have to be the perfect church going at least once a week, white picket fence. We have Bible studies every week or whatever. We have to basically do whatever we have to, to prove we’re good Christians. Whatever that looks like in each individual church. Another example is putting family first where we’re just forced to swallow a bunch of trauma issues we have with specific family members for the sake of keeping the peace. And whenever a blowout does happen, it’s always on the victim to be the bigger person. By the way, I hate that. Why is it on the victim to be the bigger person and not the person who actually started it? 

Mackenzie: Yeah, I don’t know.��

Amanda: I think that’s funny because again, human beings as a species are selfish. We just are. There’s multiple studies that say that. And second off, there’s a difference between being selfish and being evil. Being evil is taking selfish action directly to hurt someone intentionally.
Speaking up for your needs or doing what you have to, to survive, that’s not selfish. That’s not evil, I mean, sorry.

Mackenzie: It’s okay. I just wanted to bring up the church thing and how I didn’t grow up with church. That’s never in my framework when I talk about things, but I think it’s interesting how Christianity in particular is woven into the fabric of American culture. But I don’t really associate religion with the larger society of things, even though it very much is and I always forget about that. So thank you for bringing that up because church culture, that’s not American culture. But how are they really separate in the end?

Amanda: Depends on where you live.

Mackenzie: Yeah, exactly. I didn’t grow up in church.

Amanda: My mom tried. It did not work. She tried to raise me in church. It never worked. I just did not care. I was so bored. When someone told me I was going to hell when I was six years old, my response was: okay and walk away.

Mackenzie: My parents let us choose what we wanted to do with that on our own.��

Amanda: I know I have said this before but I always felt like I was in a madhouse in church. Whatever you call that room with the pews where people were touching air with their eyes closed as the guy was singing, or, talking about something. You’re touching the air. What are you doing?

Mackenzie: It was a very interesting experience.��

Amanda: So I’m just going to ask the last question.��

Final Thoughts and Reflections

Amanda: What do you want the public to know about your Autism or ADHD and how it influences your life as a binary, non-binary person, or what do you just want the audience to know in general from this conversation? Maybe that would be a better one to end with.

Mackenzie: It’s always a hard thing because I get very overwhelmed with all the things I want to say. So I want to start out by asking: From this conversation today, for you, what do you think was the most enlightening piece that stuck with you the most? I want to see if that sparks anything for me.��

Amanda: It was definitely how you brought up the language aspect and exposure to childhood because it kind of actually did make me think about why it took me so long to actually realize I was attracted to women. I never thought about that as a kid. There was never any homophobia despite going to church regularly. At least not language wise but I never saw anything outside of heterosexual couples. I didn’t know it was an option. And even when I saw relationships like Yaoi gay relationships in anime, it was always that fantasy aspect. I didn’t really connect it to real life. It’s not that I didn’t think it didn’t happen in real life. There was just no cognitive jump to real life if that makes sense. So it’s interesting thinking. I just never thought about that aspect in my childhood at all. I think I’m the only queer person on my mom’s side of the family and I don’t know. I guess I’m queer, let’s just say for the sake of simplification of this conversation, sure. Did I answer your question or not?

Mackenzie: It definitely did. And I tend to black out or have holes in my memory when I’m having conversations. So I do like to gather perspectives from other people. What did you get from our conversation? And what was your perspective? From some of the things. but I think that is so important. Yes, I agree. It’s having the language and having representation going back to what you had talked about. The Big Bang Theory and Young Sheldon. If there are going to be things in the media about a particular identity or community, it needs to be a person experiencing that playing that role. Because it’s really important for children to have the language and the role models that they can connect to. It leads to people being able to understand their experience from a younger age and I think it would lead to less mental health issues and navigating puberty and young adulthood. In general, I just think about all the people that never learned how to be themselves and how much they take it out on other people. It’s just not fair in the long run.��

Amanda: When you say that, are you talking about like closeted gay or lesbian people, in heterosexual relationships, married or something? 

Mackenzie: Yes. I’m talking about Autism, ADHD, and mental health. Whatever it is that is causing someone to not feel accepted or a part of the world. Feeling like that experience is not valid or that they have to accommodate everybody else. I guess what I’m saying is the more that we can expose and have frameworks for people around being different. Moreover, our society can heal, grow, and work through a lot of the issues with inequality and inequity that we face on a daily basis, especially when it comes to people of color, racism, and, all the issues around trans, it doesn’t make any sense to me. And the whole idea of body autonomy and the government trying to control people’s bodies. What is the point of that? Why are people so threatened with people being themselves? 

Amanda: Me, oh, I was making a joke. Me teacher, me, sorry.

Mackenzie: That’s okay.��

Amanda: I have an answer to that actually and I was just being smarmy a little bit.

Mackenzie: It’s okay.

Amanda: Just to answer your question and closing this out. To me, when people attack others for their identity, regardless if it’s sexuality, gender, religion, race, whatever. It’s because they’re so insecure with their own identity that they have to project onto others. That really is what it comes down to and the fact that they don’t understand how the world is changing and they’re left behind, feeling more and more irrelevant. So they feel like they have to latch on tighter and tighter and suffocate the very people that are even trying to support them. Ultimately, what happens is people that support their ideas are going to turn on them. Eventually their control is going to trickle down to them.

Mackenzie: I think you said that very well. I’ve been having a lot of thoughts around that lately. So to close it out too, just believe people in their experience and validate them in their experience. If you witness things that oppress people further. Just the more you can do individually as a culture to challenge people and ask them why they think that way. The more that we can heal and grow.��

Amanda: Well, thank you very much, Mackenzie. I hope to have you on another podcast coming up.

Mackenzie: Yeah, thank you for starting these talks. I think they’re super important and I love to see your process in digging into the reason behind the talks, the questions, and I look forward to future conversations.

Outro Disclaimer

Michelle: Thank you for listening to Let’s Talk. ����ֱ��’s broadcast about disability culture. Find more information and resources concerning this episode and others at . This episode was produced by the Let’s Talk podcast collective as a collaborative effort between students, the accessible education, and disability resources department, and the PCC Multimedia department. We air new episodes on our home website, our Spotify channel, XRay 91.1 FM, and 107.1 FM, and KBOO Radio 90.7 FM.

Episode Transcript

Transcript edited by Hannah “Asher” Sham & Miranda Stalions

Intro Disclaimer

Kylo: You’re listening to Let’s Talk! Let’s Talk! is a digital space for students ����ֱ�� experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the opinions or positions of ����ֱ��, PCC Foundation, or our community partners. We broadcast on our home website, , on Spotify, and on XRay, 91.1 FM and 107.1 FM, and KBOO Community Radio, 90.7 FM.

Episode Introduction

Amanda: Hello and welcome to today’s Let’s Talk: Autism episode. I am your host and producer, Amanda, and we’ll be talking about living with disabilities and how public perceptions impact us. I’m joined today by Indigo who shares their various experiences in people doubting both their physical and mental disabilities due to their age, functionality, and other factors. With this in mind, I would like you to listen to today’s episodes with your own perception of disabilities in mind and how they may influence your interactions.

Meeting the Guest

Amanda: Welcome to today’s episode of Let’s Talk: Autism. I’m the host and producer of this show, Amanda, and this is my wonderful guest, Indigo.

Indigo: Hello!

Amanda: So to start off with this interview, let’s start with names, pronouns, occupation/major, disabilities, and diagnosis dates.

Indigo: My name’s Indigo. I use they/them pronouns. I am a student advocate at ����ֱ��. And, I haven’t been diagnosed with most of my disabilities. I have physical disabilities. I have some mental health diagnoses, and I also have autism, which is also undiagnosed.

Amanda: Thank you. And don’t worry, a lot of people haven’t been diagnosed with a lot of their mental health conditions because there’s a lot of diagnosis barriers, which will probably be discussed in today’s episode. But, just so you know, Inigo, it’s not uncommon and you don’t have to be ashamed or hesitant to identify as neurodivergent, even if you don’t have official diagnoses.

Indigo: Yeah.

Amanda: So, for me, like I said, my name’s Amanda, my pronouns are she/her. I am currently applying to vet school and kind of finishing up an animal science degree. I am a disability advocate ����ֱ�� as well. And I have autism and was diagnosed approximately three years ago, but I forget the exact date. I think it was like, I want to say April 2021, but I could be wrong.

Discussing Disabilities and Public Perception

Amanda: So Indigo, thank you again for joining me today, and today’s discussion’s gonna be about disabilities and people not believing our disabilities because we may or may not present in a way that people expect necessarily. So this’ll probably turn into a very interesting conversation, and I hope we’ll both get something great out of it.

Indigo: Yeah, me too. I’m excited.

Amanda: So, in your experience, do people generally believe you when you disclose your disabilities or not?

Indigo: Yes and no. People usually don’t believe the autism one. Because, I’m not like nonverbal and like people expect autism to show up in various ways. There’s a lot of stereotypes, basically based off of higher needs. They’re based off of assigned male at birth, like younger people. I feel like most of the studies, and people, believe my mental health diagnoses; my depression and PTSD and stuff, but they don’t really see it as a disability. They don’t see how it’s disabling and how it really is a disability just as valid as my other disabilities. Because it does keep me in bed, it does keep me from functioning and doing things That I see other able bodied- like when I see able bodied people functioning, I’m like, “Oh, I wish I could do all those things, like be productive and go to work and do all these things.” But, I can’t because of my disabilities, which I sometimes feel ashamed and sad about, but yeah, that’s your long winded answer.

Challenges of Invisible Disabilities

Amanda: Now that’s interesting, and you’re not the first person I’ve heard that from where if you have an invisible disability, people Seem to either be reluctant to believe you or are less likely to believe you. I know that, and it’s because of the physical disability, it’s like more people obviously see you’re having trouble getting around, or they see that You have trouble walking, or whatever. However your physical disability presents itself, people do see it, and I feel like people do give more space for it. I’m not saying people are always the best about it and can still be jerks about it, definitely. But I do definitely think it’s, you’re more likely to be disbelieved if you have a physical disability versus an invisible one, like autism. Like for me, for example, I know I’ve talked about this on the show before. When I first started discussing my autism or disclosing my autism with instructors, Especially the most common response I got was, “you don’t seem autistic.” And that’s because I’m low needs I’m verbal I can articulate a sentence and they don’t really work with me enough to see where I struggle mentally. Especially, if I have an issue with math. It’s usually when an instructor works with me enough with math. This especially happened with animal science course., I wanted to say it was like animal nutrition? Applied animal nutrition. Where I had to do some feed conversion. Feed conversion equations. And, the professor worked with me enough to really see, ” oh hey, she actually does have a disability,” “Oh hey, she actually does need help with this,” “She wasn’t just making up a disability from last term.” “She wasn’t just being lazy,” or “She just wasn’t willing to join my class.” “She actually does have a disability.” So, it’s only like when people kind of work with me enough and see it for themselves, they take it more seriously. Like, when they work with you more, do you think people “believe your autism”? If that makes sense?

Indigo: Like if they know me better and they’ve worked with me?

Amanda: Yeah. Essentially, if someone, like an instructor or an employer, works with you enough and they see for themselves where your autism presents. Do you think they start taking you more seriously?

Indigo: Not especially in my experience. Cause, I am a masker and I mask my autism constantly, for safety. With the visible versus invisible disabilities, I feel like people a lot of the time don’t believe my visible disabilities either, just because I’m young and because I’m a young person, I’m 21 years old, they don’t believe that I’m having problems with my legs or that, I really need a wheelchair. Like, they don’t believe that I can’t do the same things that [an] abled bodied young person can do because I’m young and like, “oh, you’re young, you should be healthy! You should be running around!”. And, I’ve actually had people directly say that to me. It’s really frustrating.

Navigating the Disability Benefits System

Indigo: Because, even with applying for disability; I’ve been applying for benefits, and I’ve been denied like four times. I’ve been applying for like three years. I finally got a hearing date and they said that even though I’m showing up in my wheelchair on the hearing date in the court, they could still deny me. Basically saying that I’m faking my disabilities and that I’m lying and that I’m not really disabled, which is like really fucked up.

Amanda: That really sucks, and I apologize for what I said before about your visible versus invisible disabilities, that was very ignorant of me. I didn’t realize that just because you’re young, people don’t believe your physical disability. That’s just really bizarre to me, cause you’re very clearly, especially if you’re in a wheelchair, it’s like, why would you make that up? Like what possible reason would you have to make it up, especially if you’re taking the effort to apply for benefits, show up for the hearing. Cause to me, if someone was gonna fake all that, they wouldn’t go through that much effort. At least that’s my perspective.

Indigo: Yeah, it’s really ridiculous. They are basically saying that I can work. I mean, I can work maybe 4 to 10 hours a week at a remote, really accommodating job. But, I can’t work a living wage. And they think that I’m able to work and that my disabilities basically don’t disable me enough. It’s really invalidating is what it is. I’ve heard a lot of stories about this hearing process being traumatizing. Going to court, someone arguing against you; basically, on two sides, arguing on one side that you are disabled and you can’t work and that you need benefits, and then someone arguing that you’re not disabled, to your face. And, I’m kind of scared about how that’s going to be because I feel like it will be traumatizing and I’m starting to prepare myself a little bit for that. So yeah.

Amanda: This is gonna sound really ignorant, but in these hearings, are you provided any kind of attorney or legal defense or, to help argue your case or not?

Indigo: Oh, yes, definitely. I have an attorney. I wouldn’t have been able to get this court date without an attorney. It’s really hard to go through the process of getting a court date. It takes years, usually, and a lot of appealing. It’s almost impossible to go through the process of getting a court date without an attorney. Because, first of all, I’m disabled, so it’s hard enough; the paperwork, all the legal things that I don’t understand, and then just like having someone represent me and like understanding all of that. So, it’s really hard for a lot of people to get a court date and a lot of people give up, because the process is so ableist.

Amanda: Is the attorney provided to you a specialist in ADA regulations or not?

Indigo: Like, are they disability friendly?

Amanda: Not just disability friendly, but are they aware of your laws and rights, essentially?

Indigo: I hope so. I’m not quite sure on that. I’ll have to look into that. I’m glad you brought that up. Because, the person I talked to on the phone seems really understanding of, like, the whole process and very knowledgeable and also very empathetic. Very kind to me about, like, “yes, we know you’re disabled. I know this process sucks.” “I know that it’s ridiculous that you have to prove all of this in order to just…” They’re very cool about the whole thing. But, yeah, have to ask them about that. Because, I would assume they are, with my experience that I’ve had with them so far.

Amanda: Yeah, and I’m assuming that they would be at least familiar with ADA and other disability compliance laws. The reason I ask that is because You just never know. Especially with the system. it’s just something to kind of prepare yourself for as well.

Indigo: Like, they could not be able to defend me properly without their knowledge of that? Is that what you’re saying?

Amanda: No, they wouldn’t be an attorney, in their position, if they wouldn’t know how to defend you. It’s more like if they have personal experience; specialize with disability regulation and law. They’ll be able to argue your case much better. Like whatever the opposition kind of tries to say, you’re not disabled or you don’t deserve these benefits or you don’t need these benefits and you can work. Whatever they come up with, your lawyer will be able to argue it a lot better if they do have that familiarity.

Indigo: Oh, gotcha, yeah.

Amanda: I should say attorney, not lawyer. Attorneys and lawyers are actually different.

Indigo: Yeah, yeah, this person’s an attorney, I believe. That is a good thing to be aware of.

Amanda: Well, the reason I asked that is because both of my parents are lawyers. And my mother is a certified CPA, or she was for a really long time. And my father did real estate law. When they divorced, they both had to get their own attorneys for divorce court, because neither of them were in family law. So, that’s what I mean. It’s like, you can be an attorney or a lawyer, but if you’re not specialized in one area of law versus the other, you’re going to have to get your own legal representation in that field, if that makes sense.

Indigo: Yeah, I get what you’re saying.

Amanda: So yeah, I’m sorry that you have to prepare for that, and it sounds like it’s going to be a very trying process. But, the reason I asked you questions about that is, I’m going to be honest, I’ve never thought about going to courts and arguing for my right to be recognized as disabled, and needing benefits for my disabilities. Because, I have the privilege of being able bodied and being able to work, but I definitely would never assume that someone else has the same abilities as mine. I also would like the audience to give respect and space for the process you’re going for as well, which is another reason I wanted to highlight that.

Indigo: Yeah, thank you. I think it’s something a lot of disabled people have to go through if they even feel capable enough to go through the process. Because, going through the process – it doesn’t just take a lot of energy. It’s like almost impossible as a disabled person. But thank you. Thank you for saying that.

Understanding Masking in Disabilities

Amanda: With that, I think we can get right into the masking question. So, do people treat you as an able bodied person without taking into consideration your needs and difficulties because they don’t believe your disabilities? What is that like?

Indigo: Yeah, I guess they expect more from me. They treat me able-bodied because I can do things just like everybody else. and they expect me to do things that able bodied people can do. like if we’re going somewhere and I’m not using my wheelchair; with parking, for example, they park far away and I always have to ask, “can we park closer?”. I feel like they’re not seeing my disabilities in that moment. It’s like, “Um, hello? Are you unaware of the fact that I can’t walk far distances? Like, can we park closer?”. Just little things like that, that I get microaggressions a lot from able bodied people who see me as able bodied a lot of the time. I feel like they don’t see me. They don’t see my disabilities. And, so they don’t see my difficulties, and it’s not just about not accommodating. I feel like the expectations should be different for me. Like, no, I can’t hang out with you today for four hours. Because, I have a really low battery and I start out with less spoons than everybody else and I don’t have the amount of spoons it takes to hang out with someone for four hours. Especially, if you’re able bodied and I’m masking around you because that takes even more spoons. They think I’m able bodied a lot of the time because I mask my autism and they don’t try to Socialize with me on my frequency. That’s another thing, they use sarcasm or it’s like they’re all in on a joke that I don’t understand; that’s what it feels like. Or, they were all given an instruction manual that I wasn’t given on socializing. And I have to fill in the gaps, and I’ve gotten really good at like trying to act as a neurotypical trying to socialize on their frequency. I’m always trying to meet them at their frequency instead of them trying to meet me at my frequency, if that makes sense.

Amanda: It does. I wanted to ask you a little more about masking. The reason I want to ask about masking with you is because, I don’t think a lot of the audience understands what we mean by masking, especially on the neurotypical level. So, when you say masking with your physical disabilities, what does that look like? Like, why would that cause people to think that you’re able bodied, or that you can function like an able bodied person, if I may ask?

Indigo: Oh, with my physical disabilities, not with my autism?

Amanda: The reason why is because masking, to me, can also apply to physical disabilities. Because, I think a lot of people may be in similar situations as you. Where they have to essentially push themselves physically a lot more than they should, because they’re expected to keep up. Kind of like, mentally, with autistic people, we’re expected to keep up mentally and socially somehow With neurotypical people. Even though we don’t have this invisible instruction manual.

Indigo: Yeah, it can look like not complaining about my chronic pain, or not complaining about how tired I am. Even though I’d like to say like, “Oh, I’m so tired right now. Like, I just want to sit down.” but, instead, I try to keep up and I try to do things like everyone else. Especially with standing while we’re talking. Sometimes I’m like, “Oh, can we actually sit down? Because like, I’ll be able to give a lot more mental energy and zest to the conversation if I’m sitting down.” Or if I’m standing up, I’ll just be like won’t be able to focus and I won’t be able to contribute as much to the conversation. Because, I’ll be focusing about how much pain I’m in or I’ll be feeling strained or tired. Yeah, it’s like little things like that. For example, I’m like in bed right now because I know I would be able to focus better and give better conversation because I’m laying down.

Amanda: Thank you. And if you need a break at any point during this podcast, just let me know. This conversation is meant to be relaxing and not stressful. Well, I’m hoping it’s not stressful to you at all, but that’s kind of the goal.

Indigo: Oh, thank you. I really appreciate that.

Amanda: It’s like I’m sitting down in a chair right now, so I’m not gonna judge you for laying down on your bed. That’s where you’re comfortable, that’s where you’re gonna focus the best, I get it.

Indigo: Yeah, thank you.

Amanda: So in terms of masking your autism, what does that look like?

Indigo: Well, I’ve given up on the eye contact thing. I used to try to make quote unquote normal eye contact. I hate that word “normal”. But, I’m trying to Keep my talking up to speed, like the pacing of my talking and how fast I’m talking, Just so it sounds like I’m not pausing too much. Cause in reality, I need a lot more processing time than most people, and I would be like talking, and pausing, and talking, and pausing between every word. Or, like taking more processing time, I guess is what I’m trying to say. Instead of speeding up my brain, so to speak. And then also my tone of voice; trying to control my inflections and my tone of voice. How I talk when I’m unmasking my autism, it’s kind of like this and it’s like a little goofy and I’m kind of a little more silly with it. I kind of sound like a kid and I don’t use this voice a lot because I don’t want to be perceived as a child. I get a lot of infantilizing, and it’s scary to be myself, if that makes sense.

Amanda: In terms of the masking of autism, I kind of get what you’re saying. Because, I’m actually the opposite of you in terms of my brain processing. I feel like what happens with my brain is it actually goes too fast, and I actually miss details and conversations and questions and I end up taking things out of context or responding in a bad way. Or, not a bad way, but maybe a weird way. So, maybe I mask a little bit, because I don’t think I mask a whole lot. Because, I wasn’t diagnosed with autism when I was a child, so I was just myself and I just got in trouble constantly. But, even when I was diagnosed, I just went for just disclosing straight away. But, it was when I had conversations, I feel like I had to grit my teeth and essentially force myself not to argue too much against professors who didn’t believe I was autistic, necessarily, or thought I was making stuff up. Or, not making stuff up, but essentially trying to game the system to essentially make classes easier for myself, I’ve definitely had that. And, in terms of the voice inflections; that’s an interesting point, cause, when I was a kid, I remember I was told a lot that I had like a snotty tone, or like a really indifferent tone. And, I wasn’t trying to be snotty, that’s just, this is just what I sound like. I just have a naturally flat tone and, I’ve heard this a lot, that autistic people have this a lot where we have like flatter tones, or we have atonal tones, and we can’t really do voice inflections that well, or we have to really try. My wife is definitely better at it than I am, and that kind of makes us come across badly sometimes in social situations. I just don’t have the patience to mask with situations like that. Because, “A”; I’m probably gonna get in trouble anyway, so what’s the point? And, “B”; if people have a problem with me because of my voice alone, they’re probably not worth my time interacting with anyways. If it makes you feel any better, Indigo, I think your voice sounds fine. I wouldn’t assume your age based on your voice. I’ve met people with really high pitched voices. I’ve met people with really low pitched voices. I could not tell your age by your voice. To me, it’s like you’re in university and college, so I at least assume you’re old enough to be there. I’m not sure if that helps, but yeah.

Indigo: Yeah, they don’t think I’m younger. They just treat me as a kid or they like baby me. there can be a lot of Scary, toxic things that happen with infantilization. Especially, with a lot of the traits I have with autism. Like I have this mechanic bird that I really like talking to. It’s like a toy bird that chirps to me and talks to me and I talk to the bird and people would start to see me as like a three year old or would like treat me as like someone who’s much younger than I am. Just kind of try to be a parent to me or like, I don’t know. It just feels really gross. Cause, I want to be able to do my things that seem childish that, in reality, are just things I do that don’t really have an age to them, in my opinion. I would like to be able to do those things without being seen as a child. I want my independence and, I mask a lot of those things too. Like a lot of my noises that I make; like my I make a lot of noises. I’m kind of like a little animal. Well now I just infantilized myself! I call myself a little animal! Anyways, you know what I’m getting at, I think.

Stimming and Social Challenges

Amanda: I think what you’re describing is what’s called, “stimming”. Or, I don’t know if you’d describe that as “stimming”? But, that’s kind of what it sounds like to me. To me, “stimming” can come in so many different forms that you talking to a mechanical bird would literally mean nothing to me. I’m not gonna lie, I would probably be creeped out by a mechanical bird, not because it’s anything against you. But, because when I was a kid in the mid 2000s; this might have been maybe a few years later, I don’t remember when this came out exactly. But, there was this plastic mounted fish that talked and sang as you walked by it. I hated that thing. It creeped the hell out of me, and I wanted to destroy the thing in my grandparents house, because it just freaked the hell out of me. I don’t know why. Like, for some reason, Things with eyes that follow you around the room just creep the hell out of me. Anyways, I guess what I’m saying is, I feel like people have odd reactions to stimming sometimes, and I feel like parents in particular try to regulate us as kids. My wife and I definitely had this as kids where, one thing I do when I’m standing still and I’m waiting for something to happen is I sway side to side. Like I have a hard time standing still. It’s not because I’m trying to be disruptive. I’m just trying to regulate my energy and make sure I’m not like wandering off or, like, bouncing up like a bottle rocket. Oh yeah, that’s another thing I would do. I would wander off or my brain would wander into space if I was not engaged in a conversation. My wife’s a lot better about retaining attention than I am in that regard. But, that’s what I mean. I feel like, if I stim in any of those situations, when teachers, especially, catch me, they feel like they have to pay more attention to me. Which I don’t mind if it’s relevant to what I’m doing. But, I don’t like it when I’m totally infanticized. Like, there was one teacher who misunderstood a question I had about an instruction on an assignment and she spent half an hour reading out the instructions of the assignment that had nothing to do with my question. Eventually, I just ended the call and was just like, “okay, I’m just gonna have to get a bad grade on this assignment. this is really fucking annoying.” So, I don’t stem in the same way as you and I definitely am not infanticized as much as you, it sounds like. But, I definitely have had that before and I find it very effing annoying.

Indigo: Yes, it is annoying. It’s almost like a form of pity too, is what it feels like. It feels like they feel bad for me that I’m autistic or something. like it’s a bad thing or something. When it’s not a bad thing, like, why do they think it’s like this curse? like a doom to the death, and I’m battling with some kitties, and the cats are scratching me in all the worst ways, and they feel bad for me that the cats are scratching me.

Amanda: I wouldn’t quite describe it like that. My theory about that is that people like to feel like they’re doing something good, if that makes sense. Like they want to feel like they’re doing their good deed for the day. I don’t think that’s a good excuse, and I definitely think that’s toxic. Because, First of all, you shouldn’t be bothering me just to make yourself feel better. And, second off, they’re kind of basing their assumptions on autism, assuming they’ve even heard of it, on really old stereotypes. I think you said “nonverbal” before; that’s definitely a stereotype, or just having trouble regulating emotions and having outbursts, that’s definitely a stereotype of autism. Or, they just watch too much Big Bang Theory and think we’re like Sheldon Cooper, which is definitely extremely inaccurate.

Indigo: Yeah, that makes me angry. I guess those people don’t matter anyways if they think I’m below them. Like, those people just don’t understand and are just gonna Be like that.

Amanda: Keep in mind, I could be wrong, and this definitely isn’t everyone. But, I think it’s really misguided. Like, people just really want to believe they’re helping us. Like I really do think a lot of times it is coming from a really good place. There’s this phrase that I really like to describe with advocacy especially, “The road to heck is paved with good intention.” Basically, it means you try to do good. This is a lot of inclusivity movements, in my opinion. People really try to do good from a privileged standpoint. But, because they’re from the privileged standpoint, they don’t understand the needs of the disabled people, or another marginalized group, is. So, they end up making the situation worse, or they end up causing new problems.

Indigo: Oh, yes. Yeah. That makes a lot of sense. I see that.

Amanda: Yeah, like a really common one I see is something I actually heard of in several classes I had. Where I would have people in the comments and discussion boards responding to my post saying I was so brave for coming out as autistic in class, and that their parents worked with autistic people, or they had a sibling that was autistic. And that always made me die inside because that told me that they think they know everything about autism. Usually when I would correct them in the comments section, they would not respond and they wouldn’t respond to me again in the discussion post. And it wouldn’t be like I’d go after them saying, “oh hey, you’re kind of spreading ignorance.”, or something like that. I would just be like, “hey, I appreciate your compliment, but what you’re saying about me is kind of a stereotype and this is more context into why I’m good at this particular subject.” like a lot of people assumed I was really good at math. I actually struggle with math, I actually have to put in quite a bit of effort. I can do math, but it takes me a while to learn it. But, whenever I would make corrections like that on the discussion board, they would never comment. They would never respond to me, they would never comment on a discussion board post I did again.

Indigo: That’s just plain rude.

Amanda: I mean, not necessarily. The thing of it is, because of the discussion board; my guess is that they were probably too embarrassed, or they really genuinely didn’t find my discussion post interesting after that.

Facing Embarrassment and Bias

Amanda: But, it’s just the embarrassment people do not like when they’re corrected. People do not like to be corrected, and they get really embarrassed by it. They just don’t want to continue the conversation with you afterwards. Because part of why I think people don’t believe our disabilities a lot of times, especially with autism and even your physical disabilities because you’re young, they don’t want to confront the fact that they have their own biases and prejudices. I know that we talk about that like in corporate training. But, when it’s applied to the real world, I feel like people are really terrible about either holding themselves accountable or holding each other accountable.

Indigo: Yeah, I think people just are afraid of looking at themselves in general, too. people don’t want to admit that they’re ableist. They don’t like seeing that about themselves when we all have our own internalized ableism.

Amanda: Well, “ableism” in my opinion, really comes from ignorance. Like, I made assumptions about your disabilities earlier in this podcast when I said that people probably believe your physical disabilities because they’re visible. But, you corrected me and said that’s not the case because you’re young.

Indigo: Yeah.

Capitalism and Ableism

Indigo: I think it also comes from capitalism.

Amanda: How so?

Indigo: Because capitalism breeds off of ableism. Or feeds off of ableism. Like, if we weren’t making money off of our bodies with the work that we do, people would be more accepting of disabilities in this world. Because, people generally devalue disabled people because we can’t work. Because, we can’t fit into capitalism in the ways that we’re expected to. You know what I mean?

Amanda: That makes sense, and extra resources have to be given to ask for care. For example, like with disability.

Indigo: Yeah, and that makes people hate on us more. The ableism comes from that too; it does come from hate also. I feel like it’s not all ignorance. Like, Some people are very aware of it. And, it’s about money. I feel like a lot of the time people think we’re relying off the government and we’re lazy and that we aren’t contributing enough. We’re just not seen as valuable. they also see us as not human.

Amanda: Yeah, and I wasn’t trying to say that all of it comes from ignorance, and there are definitely people out there, like you said, where it does come from hatred. The less than human part; I know a lot of people don’t mean to do that, but that definitely is how it makes us feel. I definitely do agree with you there.

Struggles for Accommodations in Education

Amanda: In work or school, have you ever had an authority figure deny you accommodations because they didn’t believe your disabilities? How does this impact your ability to work or function?

Indigo: Yeah, definitely. I’ve been denied accommodations so many times. With school, I had to work so hard just to get a note taker. it was hell, and they basically told me that I didn’t need a note taker, and that I just had to learn how to take better notes. And, I was like, “no, because of my disabilities it prevents me from taking my own notes,” and, they were like, “well, you could try this other program that could take your notes. You could get recordings of the meetings and then take the notes.” Like, they were trying to find ways around it and I was like, “no, just get me a note taker.” They said, “the disabilities you have the doctor’s letters for, we don’t see a need that you need a note taker because of these disabilities.” And, because I didn’t have certain disabilities, I was denied a note taker and I finally fought back. We finally got another doctor’s note that specifically said that I needed a note taker. And, the reply back times were so slow. It was like ridiculous. I shouldn’t have to go through all of this work just to get a note taker for my class.

Amanda: I’m sorry that happened to you. I’ve had similar experiences. My Disability I tried to get was a little more complicated. I tried to ask for some specific required courses to be remote rather than in person. because, I have anxiety that interferes with my ability to sleep sometimes and that would obviously make it dangerous for me to drive. Even when I presented diagnosis papers of my autism, Even when I presented a doctor’s note from my neurologist, I was still denied accommodations because it was considered unreasonable. Even when I offered to do alternative assignments, to work with a veterinarian, or some kind of animal producer in my local area to meet the course objectives. They just still said “no”. And, even when I asked could I just not come down for like every single class period, they were still like, “no”. Or, it was up to the instructor and some of the instructors point blank made it impossible for me to come to their class because they said that There would be a random class assignment during each week. And I asked, “okay, what day?”, And they’re like, “it’s random.” I’m like, “you expect me to, Essentially, twist myself inside out to come down early morning. And you can’t give enough effort to me to tell me what day a random class participation assignment will be on. I also had another instructor who was very passive aggressive who tried to not make me fail a lab, but definitely would have lost a lot of points on that lab. I was in the lecture and it was the day before the lab. she just said, “remember you have to have the horse skeleton memorized before lab.” And I was like, “you didn’t post this on Canvas or email.” And she said, “you should have been in class on Thursday last week.” Thankfully, I took Comparative Anatomy and Physiology like a term or two before, so I knew the skeletal parts of the horse anyways.

Indigo: That makes me angry. I feel like there shouldn’t be so many barriers to education. That’s just ridiculous. it should be accessible to all. Like, anyone who wants to get their degree or learn. Like, we should be able to, just like anybody else.

Amanda: I eventually, after a lot of fighting, I finally got a flexible attendance agreement between a couple of instructors and myself. And, it was one of those situations where it was a compromise, where no one was happy with the result. But, in the end of the day [sic], it did work for me. I actually do have my final production course where my professor has actually been very nice, reasonable, and accommodating, and he’s actually been really awesome. Here’s the caveat that a lot of professors like those ableists really miss; Because he’s so accommodating and welcoming to me and doesn’t hold my disability against me, I want to go down both days the class are in Corvallis. So, I do because I have such a good time in his class. And a lot of professors don’t really get that. It’s like, I am willing to put in the work and effort if I get the positive feedback. I don’t want to go to a class where I’m not welcome.

Indigo: Yeah, I feel like it’s almost done on purpose sometimes. Like, people don’t give accommodations because they want us to have barriers, and they don’t want us to rise up and have more privileges. because, if you think about it, education is a privilege. And, when you have your degree you kind of like, have another privilege and you’re able to access more things in the world, and you’re able to make more money, sometimes, and Things like that. So, it’s like keeping disabled people from graduating and getting their degrees and, quote unquote, “moving up in the world”. Like, there’s a reason for that. I feel like there’s multiple reasons why people don’t provide accommodations. But, I think that is one of them that few people realize.

Amanda: Yeah, my experience with these instructors is that, “hey, they’re the animal science department!” And that’s a program that’s very ableist by nature. I wouldn’t say it’s overtly sexist because it is actually predominantly female, believe it or not. But, because it’s kind of a traditional mindset where essentially students who want to become veterinarians, they have to want it enough to make themselves suffer essentially. I take the flex bus down twice a week for Corvallis, by the way, so that’s how I’m getting around the driving issue with this class. But, they’re like, you need to suffer and prove yourself you want this enough to go through all this effort when I only have to grade papers or whatever. it’s also like this whole “sucking up contest” too. Because, vet school is so competitive that students just want a recommendation letter from the veterinary teaching staff. So, that makes that extra ableist as well, because teachers can essentially be as picky as they want. Like I said, I’ve gotten really lucky with this, my last professor, but this animal production course, I get to work with sheep. It’s actually pretty fun. they’re actually really cute. Not very smart, but they’re cute.

Indigo: Aww! Are they fluffy?

Amanda: Depends on the breed. Merino sheep definitely are. But, if you have, like, Shetland sheep that has a little coarser roll. I mean they’re fluffy. I wouldn’t say they’re very soft.

Indigo: Do you get to pet them?

Amanda: Oh, yeah.

Indigo: Awwwww!

Amanda: They’re cute. But, yeah, so that’s unfortunate, though. And I brought this up in conversations before about education; where the more barriers you put up the less sustainable. Especially, when we’re in a period of, like now, where cost of living is so high. Students, in general, are being forced to work more and pay less attention to school. So, that is going to cause lower attendance rates. So, if you don’t make the classes remote, or at the very least more flexible; you’re gonna get a lot, a really major drop in attendance, and only the really rich are going to be able to attend university. And they’re probably gonna go into business or politics anyways, because that’s what their families did.

Indigo: Yeah.

Amanda: So it’s just not a sustainable model anyways, and that’s what a lot of people aren’t getting. And, COVID 19, it was a really hard time that everyone went through. But, a major issue it exposes the fact that there’s a huge shortage in the medical community. So, many people quit and got burnt out and we haven’t been able to fill the gap since.

Indigo: Yeah, more people are getting disabled from COVID too.

Amanda: So, we kind of already discussed this; Have there been times where you’ve been denied accommodations, despite having paperwork or having obvious physical or mental signs, that authority figures seem to ignore?

Indigo: Yeah. So, I have paperwork for a lot of things and I’ve still been denied. Like, I tried getting accommodations with TriMet Lift about the type of vehicle I get, because of my wheelchair and I don’t want to go in a van or in a car. Also, because of trauma. I don’t like riding in cars and vans. With strange men. I don’t know. Because they’re strangers and I’m getting in their car and it’s weird. Like, I have to do that still. they denied my request for that accommodation because they said “it was unreasonable”. And like, why is it unreasonable to just do the bus every time, instead of the van or the car. Like they could definitely work around that.

Amanda: Out of curiosity, when people do deny you accommodations like that, despite having paperwork, do they ever give you a legitimate reason or explanation? Maybe not legitimate, but do they ever give you, like, any kind of sufficient explanation about why it’s unreasonable?

Indigo: Basically, saying that I don’t need it. Like, with the note taker thing, it was like, “Oh, you could learn how to take your own notes!”. Or, like with the TriMet lifting, it’s like, they’re basically assuming that I can work around it. That I need to accommodate them.

Amanda: Yeah. do they bring up your medical conditions, or your disabilities, or do they even mention that in the denial statement, or denial letter?

Indigo: They don’t.

Amanda: Yeah, so, with the accommodation denial I got, they basically just said it wasn’t reasonable, and that remote attendance just wasn’t reasonable. But, because I had so much paperwork, they did come up with a flexible attendance agreement. Which, I don’t know how often they’ve done before. But, It is a complicated process. I will give credit there. Because, they did basically have to make up a contract between me and the instructor about how many labs I would attend or I’m allowed to miss, due to my disability. Or how many classes I have to attend or how many classes I can miss, due to my disability. but, the instructors are still basically the gods of their realm in the classroom, so they could still Deny or accept me based on their own perception of my disability, if that makes sense.

Indigo: Yeah, why are they getting to say how disabling my disability is? How does it feel to you when you hear that? Like, what’s your perception of that?

Amanda: They’re lazy, basically, and they just don’t want to make exceptions for me. they just don’t want to make up new policies for me, basically. to me, it really is just sheer laziness, and I think it is slightly about money. Don’t get me wrong, but I really do genuinely think it’s an administration that just doesn’t want to change.

Indigo: Oh, interesting. I feel like for me, it’s like sometimes the people in power; it’s almost like they get something out of denying me. I don’t know if that’s me just assuming the worst in people. But, I do think sometimes it’s because they’re power hungry and they’re kind of getting something out of it in that way

Amanda: When I get into fights with professors about this, that definitely comes up. I don’t care what they say. It definitely comes up from I’m just saying that from the DSA perspective, it’s an administration thing, whereas professors, it definitely is a power thing.

Indigo: Yeah, it’s like because they’re able bodied they get to have this power over me and They get a kick out of getting the power over me. Not with like every situation. But, definitely the DRC. Like they seem very; I don’t want to go so far as to say abusive. Well, actually the person I met with at the DRC; she was exhibiting abusive behavior, the way she was talking to me and talking down to me. I’ve had mental health crises after having appointments with these DRC counselors, just because the way they talk to me and like, they’re supposed to be the ones accommodating me, you know? Like they’re supposed to be the ones trying to help me and they’re just completely Being ableist to my face and I’ve had really bad experiences with that. I’m trying to think of some other examples. I know there’s been a lot.

Workplace Challenges and Ableism

Indigo: I’ve never gotten good accommodations with work. I’ve always had to leave jobs or been fired because of my disabilities. because, they don’t accommodate, especially my mental health ones, cause they don’t really see those. They basically say if I can’t work the job efficiently, and I can’t do it because of my disabilities; then they don’t value me, and like, I shouldn’t be working here. And, they don’t like try to accommodate at all. I had one as a kid counselor for a summer camp; which is like a really physically taxing job, working with kids. And I tried really hard to be good at that job. I was good at that job, like I work really well with kids, but the thing was, I didn’t have the energy to keep up all day and they wanted me to be like really peppy and like happy go lucky. they would correct me all day long about how I wasn’t being energetic enough for like things like that when I have chronic fatigue and I have body issues and like come on! Why can’t you accommodate me in this small way? they basically told me they were gonna lower my pay if I couldn’t, make changes. but yeah, that’s my sense about that.

Amanda: Yeah. And that actually kind of reminds me a little bit; another note about the professors thing. In the professors view, they genuinely think they’re doing me a favor by forcing me to go down to Corvallis. Because, To them, I’m participating with the class and they’re treating me like any other student. I think with your employers; I am not defending either the instructors or your employer for doing this, to your employers, they’re going to make it more enjoyable to the kids, and they’re making it more enjoyable for you. I’m not trying to play devil’s advocate at all, believe me. Because, I don’t think either of those perceptions are good. But, it’s this whole ableist perception where they think they’re doing us a favor by trying to force us to act normal, quote unquote. And that’s like, the biggest toxic issue neurotypical people have, and able bodied have, with society. If that makes sense? Just pretending our disabilities don’t exist, and treating us as normal, quote unquote, or trying to force us to be normal, quote unquote.

Indigo: Yeah, that’s so true. Like, I think they think that if I act, quote unquote, “normal”. Because, I don’t like that word. But, like…

Amanda: I also just don’t think there’s such thing as “normal”.

Indigo: Yeah, I like the, quote unquote, “normal” way of saying it. I think why they like doing that, or why they think that’s good to do that. Like you said, it’s like, they think I’m gonna be healthier. With the exercise thing, people think I should exercise; and I tell them that I can’t because of my disabilities, and they’re like, “well, you should be walking this much every day”, and, “come on, let’s take a walk together!”. Like, “it’ll be so good for you!”. Like, kind of trying to force me to be like “able bodied”. because, they think it’s good for me, and, like, they don’t understand that My way of living life is good for me too, you know? I enjoy a lot out of life. I’m happy most days now. Even though I struggle with my mental health, I’m doing a little bit better.

Amanda: And to me, about the professors who Are so convinced that I have to be down in Corvallis to get everything I can out of the class, especially like peer interaction. Let’s all be honest, we’re paying way too much money for this class. I’m not going to have any interest in interacting with any of these people after this class. Let’s not pretend this is a bad family reunion.

Indigo: Bad family reunion.

Amanda: Like, there’s no reason to force interactions, just let me get my work done and get my course requirements done so I can get my degree. Like, we don’t want anything else beyond that with each other.

Indigo: Yeah, for real.

Advocating for Ourselves

Amanda: So, do you ever have any advocates help you with filing for disability, or other such accommodations? Or, do people ever help advocate for you if you’re ever denied? Or, if you’re infanticized, does someone else say, “hey, let’s not do that?”.

Indigo: I kind of advocate for myself for the most part. Which can be really hard. I’m just like trying to gain my independence back. I do have people come with me to like doctor’s appointments and things like that. Like friends and stuff for support, like mental health support. but I’ve gotten pretty good at advocating for myself. sometimes I do wish I had at least a social worker, like someone on my care team, who could help me manage everything with my disabilities and like getting things done. Because it can be kind of exhausting doing all of this by myself, honestly.

Amanda: The reason I ask is; An interesting topic has come up with the core sciences group I run with Phyllis recently. The fact that faculty usually don’t advocate for students that they know are facing ableism and racism and other issues in class. They don’t know how to, hold each other accountable. It’s like students are told all the time to hold each other accountable when we’re either racist, ableist, or sexist, or whatever “ism”. But, faculty don’t do that for each other. And, I definitely discovered that too, when I considered filing a complaint against that one professor who almost screwed me out of a lab. My advisor, point blank, told me she was not paid enough to give me advice on that. I appreciate the honesty, actually, I really do. Because, she didn’t try to give me the corporate answer that’s like 10 minutes long of absolutely nothing. She just said, “I can’t give you this advice. I really can’t. I’m just not paid enough to go up against this woman.”

Indigo: Whoa…

Amanda: People might criticize my advisor for that. But, to be honest with you, I appreciated the advice. Because, that just told me how on my own I was with this. I’m currently a research assistant under my lead researcher, who’s actually a neurodivergent woman herself. And I did talk to her about the situation and she, point blank, told me that I could file a complaint against this woman. But, it would professionally screw me in that university. So, she just advised that I wait on it and see. Especially, if I go to vet school, potentially; that if I do file this complaint, I’m going to have a lot of bad blood with this instructor in vet school. And that’s just not something professionally, that would be a good idea, unfortunately,

Indigo: Yeah, that makes sense. how the bad blood would be bad for your professional life.

Amanda: The reason I bring that example up is because; it’s like you said, “we’re primarily on our own in terms of advocating for ourselves”. And I want the audience, especially faculty, to think about the fact that; if they have students telling them, a coworker of theirs is being a bad person to them. Instead of thinking to them, saying, “Oh, this teacher is such a great person. I work with them. I learned so much from them”, and stuff like that. Think about what the student is saying, and think about how they’re actually treating the students. Because how they’re acting towards you is a completely different face than what they’re giving the students.

Indigo: Yeah.

Amanda: I know that sounds kind of critical. But, it’s just… Abusive people are really like this; where they’re very good at presenting one face to you and are completely different to someone else. Because, that kind of makes you doubt whoever reports them.

Indigo: I hate that. that freaks me out. It’s almost like – they’re like a monster. Where they’re like, ” Oh, I’m gonna lure you in with this candy”, and then, rah! Chomp! They eat you up.

Amanda: Yeah, and maybe that’s a little too critical to say. But, I guess what I’m trying to say is; students, if they hear a faculty member advocate them, especially if it’s another teacher, that really makes them feel safe and that really makes them belong. At least that’s happened to me; I definitely feel like I belong there. And even if it wasn’t the advice I wanted from the lead researcher, it did give me assurance that I could trust her. That she was real with me.

Indigo: Yeah.

Closing Thoughts on Disability

Amanda: The last question I have was closing statements; what do you want the audience to think about when thinking about other people’s disabilities?

Indigo: I want people to think about how strong we are. I want people to see our strengths and to acknowledge the fact that we’ve been through a lot and how resilient we are and how strong we are is really important. I feel like we’re the most empathetic, loving, caring people, and we really can understand how to survive life. In like our own unique ways. we’ve built that skill. we’re very strong and we are very skilled in how to go through the hoops and just be able to survive all of the trials that life brings to us. To just maybe take a step back from judgment sometimes, or pity, or assumptions and to just really not be afraid to ask certain questions. Just see us as people and see us as your equals and your peers. Because, we’re all around and we are resilient and our disabilities don’t make us incapable. They don’t make us incapable of being loving human beings and being compassionate human beings; which is actually a skill that a lot of people lack. And it doesn’t make us incapable of being who we are and being what we need to be. We’re not incapable people, I guess is what I’m trying to say. Autonomy is very important for me, as a disabled person. And making sure that when you treat people, who have disabilities, making sure you help us keep our autonomy. And just because we’re maybe dependent on certain people for things, like caregivers, or such doesn’t mean we’re less strong. We’re still independent in the most important way, which is our thoughts and our actions. Sometimes dependence on things like governmental aid, and other like caregivers, gives us more independence. So, there’s a lot of different ways to think about it.

Amanda: Thank you. What I want people to take away from this conversation is, not only believe people when they disclose their disabilities to you. But, to also remember what not believing them does to them. Just how invalidating that is and the fact that we have to fight for recognition every time someone doesn’t believe us. also remember that just because we don’t present disabilities in a way you’re expecting, that doesn’t mean we’re lying. It means that We aren’t Sheldon Cooper. It means that we’re not anything else you’re expecting that disabilities to look like. So, that’s about what I would like to say to the audience. Indigo, do you have anything else you would like to say to the audience before we go?

Indigo: thank you for listening and remember to pet and talk to your mechanical birds and to give them lots of love!

Amanda: Thank you, and thank you everyone for listening. I hope you’ll join me for the next episode.

Episode Outro

Amanda: Thank you for listening to today’s episode. I hope our conversation challenged you to think about your perception of disabilities and how your reactions impact others. In particular, I want to highlight the invalidation disabled people experience when denied accommodations in the workplace, university, and government benefits. Not only does this prevent us from operating on a societal level, this further isolates us because our disabilities are ignored. The way to include the disabled population is to listen and converse with us about our conditions, so we can strategize on how to meet our specific accommodation needs. Denying us out of laziness or misguided beliefs only exacerbates the problem and I hope the audience takes this consideration to heart. Thank you for listening and I hope you join me for the next episode.

Outro Disclaimer

Naia: Thank you for listening to Let’s Talk!–����ֱ��’s broadcast about disability culture. Find more information and resources concerning this episode and others at . This episode was produced by the Let’s Talk! Podcast Collective as a collaborative effort between students, the Accessible Education and Disability Resources Department, and the PCC Multimedia Department. We air new episodes on our home website, our  channel, X-Ray 91.1 FM and 107.1 FM, and KBOO Radio 90.7 FM.

Episode Transcript

Transcript edited by Miranda Stalions

Intro Disclaimers

Kylo: You’re listening to Let’s Talk! Let’s Talk! is a digital space for students ����ֱ�� experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers, and do not necessarily reflect the opinions or positions of ����ֱ��, PCC Foundation, or our community partners. We broadcast on our home website, , on , on X Ray 91.1 FM and 107.1 FM, and KBOO Community Radio 90.7 FM.

Introducing the Episode

Amanda: Hello and welcome to today’s very special Let’s Talk Autism episode. I’m your host and producer, Amanda, and today there will be a panel discussion between two college students and instructors about Universal Learning Design, or UDL. UDL is one of the premier inclusivity movements in education, and can be described as a teaching method in which all students can succeed because their individual needs are being met inside the classroom. The three main principles of UDL are engagement, representation, and expression, in which the teacher would ideally identify the best method each student needs to interact with the material and retain it. However, my concern is that this is unreasonable for both instructors and students. Administrators are telling instructors how to teach without resource consideration and instructors are assuming what students need without speaking to them. Today’s episode is showcasing that UDL and other learning topics need to incorporate both students and instructors in discussions to determine viable solutions.

Episode Start

Amanda: Thank you and welcome to today’s Let’s Talk Autism podcast episode. I am the host and producer Amanda and I am joined today by professors Josephine and Heiko, as well as students, former students, graduate students, Eliana and Edith. Today we’re going to talk about universal learning design or universal design for learning. This subject has come up recently in terms of education and in ways to improve education. Because the idea is to essentially make any classroom basically possible for any student to learn. We’re going to kind of discuss what this means to both instructors and students, as well as, what these terms can mean on both an individual level, as well as a systemic level and how we could actually achieve this. So, without further ado, I’m happy to introduce our guests and we can get started. Josephine, would you like to start?

Josephine: Sure! My name’s Josephine Pino. I use she/her pronouns. I teach biology at ����ֱ��, and I’ve been teaching biology for a long time. I’d say the other hat I’ve worn is to teach bioscience technology or biotechnology. Glad to be here.

Heiko: I’m Heiko Spoddeck. My pronouns are he/him/his. I teach math ����ֱ��. I have been ����ֱ�� for 21 years, and though my major was actually physics I also have a counseling degree. I’m in a wheelchair and also very recently identifies [sic] ADD. I’ve never found kind of what neurodiversity works well for me and I realized, that’s it. I found it.

Edith: My name is Edith. My pronouns are she/her/hers. My occupation is health care worker as I continue for my major, which is nursing. My disabilities include anxiety, depression, ADHD, and also PTSD. I was a student ����ֱ�� for four years and now looking to get into a nursing program here in the Portland area. Thank you for having me.

Elianna: Hello, my name is Elianna. I use she/they pronouns. I’m a completed student ����ֱ�� with the Associates in Science, and now I’m a student at PSU in the Urban and Public Affairs program. I currently work for PCC in the Accessible Education and Disability Resources program. I have ADHD, but I’ve also been diagnosed in the past with anxiety, depression, and PTSD.

Amanda: Thank you so much everyone for being here. My name is Amanda. I use she/her pronouns. I’m a prospective veterinary student. I just finished applying to vet schools and I will hopefully hear back from these programs with positive news. I am autistic, and I wasn’t diagnosed with autism until I was 31, but I also was diagnosed with anxiety last summer, thankfully there were great medications for that.

Understanding Universal Design for Learning

Amanda: So, with the majority of us being neurodivergent, this is going to be a good conversation because I feel like universal design or universal learning is often applied to us, or used as like an argument for this design almost. I have mixed feelings about that myself. It’s like, we are people that need individualized approach, but that doesn’t mean we should be used as a blanket argument for, “hey, we need to have this system wide implementation without discussing it with both students and teachers. So with that in mind, what does universal learning or universal design for learning mean to everyone here?

Elianna: So, the way I view universal design is very strongly affected by my experience with people who aren’t disabled and are disabled having overlapping needs. But, also understanding that within the disabled community, we don’t have the same accessibility needs. We’re currently talking within the frame of neurodivergence, but I know that myself, as someone with ADHD; what helps me succeed in a class is not necessarily the same thing that helps other ADHD people succeed in a class. There’s different people with autism who have different needs. So, when I think of like universal design, I think of physically we can see this with things like ramps. So, it’s like ramps make it to where everyone can enter into a certain space. But, if we’re talking about education, I really do think it needs to be viewed in a more broad lens where we’re offering a variety of accommodations for people to meet their own needs. Some of these needs, when it comes to universal design, will help other people. So, accommodations that help people with disabilities, maybe they have a chronic illness and they’re not able to attend every class or something like that. This will also be helpful for people who are caretakers and can’t attend every class or people who have certain jobs that make it to where they can’t attend every class. That’s kind of universal design to me, in that classroom aspect. But, I think it’s something that needs to be applied more broadly. Saying we’re going to meet everyone’s needs where they are at and this is going to help different people in different ways. Some people will be disabled and have be helped by this and some people won’t be disabled will be helped by accommodations that are built in different classes.

Edith: The way I see it is to offer the ability of here are what we have, this is what we’ve tried and we’ve known in order for students to understand, to show their understanding of a subject, in whatever way they can. In that way, it’s going to present differently for different people. Some people can present it by speaking and explaining it to somebody and then you see, “Okay. Yeah, they fully understood the topic at hand.”. They can teach it to somebody else and that’s a way that they fully comprehend, and then, therefore, they can help others. it works best if they write it down and they can show you with an equation, with a sentence, with a paragraph. So, I think having the different ways for students to present what they are interpreting that’s being presented to them. Providing options is, to me, what I understand from UDL.

Amanda: Thank you.

Instructors’ Perspectives on Universal Design for Learning

Amanda: Professors, Josephine and Heiko, as instructors, what does Universal Learning Design or Universal Learning mean to both of you?

Josephine: So, one of the things that I think about when I’m teaching is, “what’s the goal?”. Like, ultimately, I’m helping. I’m there to help people learn what they’re supposed to learn, what outcomes they’re supposed to achieve, what goals they want to meet if they’re taking a class with me as their instructor. Then because we have this pesky thing called grading that we’re all required to do, we are duty bound accountable for reporting a grade. I want that grade to represent what the person, what the student, achieved. What they actually learned and could show they learned. So it makes perfect sense to me that you would want to have different ways of having students show you what they learned. So, what it means to me in practice though, it’s hard to do because of the history of how we do science teaching in particular. But, what it means to me in practice is thinking about that constantly. Am I giving students ways to learn that are going to meet their needs? What are their needs? What universal design means to me is having to learn what those needs are of a lot of different people. Which is difficult. But, then how can I help the student show me what they’ve learned in a way that’s authentic to that student and meaningful.

Heiko: Yeah. For me, when I hear universal design, it means that anyone could walk into my class and be successful. Meaning not just by me saying, “Oh, you should just, did what I tell you, then you would be successful.”. But, actually truly successful and in learning. So, then that, little bit similar to also what Josephine just says, like kind of them backwards that requires that I have a whole host of available material and the way I teach opportunities and then can look at all my students, get to know them and kind of adapt from there. This is where we come at later point. Sorry, I’m always skipping on points. But, where we come to later points where it partially gets hard. But, for me, the most important thing about that is being open to it. So, do not ever think, “Oh, I have the perfect design.”. So, universal design for me doesn’t mean perfect design, but it means if a student comes in who like I’ve never had somebody like that in my class. They have different learning needs that I’m discovering with them together or learn from them what they need. Then provide what I can reach out to others, to help and support to, learn. For me, it’s less about the grading aspect, it’s more about the learning aspect. But, I’m already start thinking about what Josephine said about, all the different ways of grading or showing that you have learned. For me, grading is really how can you as a student show me that you have actually learned something.

Amanda: Thank you. So, I’m not going to take up a lot of speaking time myself in this conversation. But, I do want to add that I think my idea of what universal design or learning is kind of what Heiko’s idea is. Where, ideally, any student can walk into a classroom and learn, but as we’ll discuss later on in this episode, it kind of becomes of a how process and how practical is that given time restraints and budgets. With that being said, though, universal design for learning or universal learning –I think I’ll just use universal learning in this episode because I think it’s just shorter and easier to say – it’s perhaps one of the most prolific efforts in making learning more accessible for students. From your perspective as either a student or a teacher, do you believe UDL has helped make classroom environments more inclusive? Why or why not? This time I’m going to start with the instructor’s side. Heiko or Josephine, would one of you like to go first?

Josephine: Yeah. I think it’s a difficult question because universal design for learning is even the acronym or the name of something. I don’t think I’ve ever heard of it until about a year and a half ago, maybe two years for the first time. But, when I learned about it, it was in the context of a conference, or something. It really resonated and I started recognizing the things that I did that I enjoyed doing that I thought were working, I saw how they fit that, then I realized, well, I’m not doing it enough. So, it’s hard to say. I didn’t approach it as like a movement that we were told to use or anything like that. It was more like I learned about it and then I saw how it could fit in my own teaching. Because, instructors in colleges and universities often don’t necessarily come into our positions from being trained as teachers. We come through all these different paths, but mostly through research and then we get a higher degree and a master’s degree, or a PhD, and end up teaching, and then we have to learn how to teach. I was very fortunate to have a lot of mentors and people who taught me to teach early on. So, I’m always looking for these new things that are described and that’s kind of how I came upon UDL. I don’t know if I answered the question exactly, but that was my experience.

Heiko: I actually learned about it very early on from Kaela Parks, who’s our PCC Accessibility, Education, and Disability Resources Director. She introduced me and I did like it also right away, the idea of that. I do feel there’s significant amount of math instructors, at this point. Like, there was a whole generational shift. I’m not saying just the older didn’t do it, but there was some young people came on and they were also more interested and in many ways technological wise, being interested in reaching more student wise, and there are also many teachers who have been here for a long time who are also totally on board. But somehow there was became more of a momentum that has been nice to see, and not everyone is on board. I want to recognize that, and not always do we reach everyone. Making it more inclusive, and there are still people we leave out. Some people are very happy in my class, I’m sure. So, I do the best I can with what I have available. But, I do feel it has, at least in our math department, made a difference. Also the way the conversations go. It is about including more people, reaching more people, making it more that more people succeed. But, we have used very little of the words in universal design. It has come more from actually also the equity language. So, it’s been more influenced for that. So, we are not using the words, or the concepts like that, but, Idea of that. I hope that makes sense.

Amanda: I think it does make sense. But, for me, universal design, it’s an ideal at this point for me. I’ve seen efforts, certainly, or like principles of universal design to try to make classrooms more accessible. Like one model I’ve seen a lot of, specifically with math classes, was flipped models, if anyone knows what that is. Where basically you read the majority of the course material for that day and then you come in with questions about the material, and the teacher is supposed to essentially go over like the lab or like our harder problems with you. I have mixed feelings about that myself. Because, on one hand, it feels kind of like a hybrid. It’s basically a hybrid class where you’re basically just taking lecture material. Then you’re essentially asking questions that may or may not be relevant to your homework or your lab. So, that’s one example I’ve seen in how universal design has been implemented in an attempt to make classrooms more inclusive.

Students’ Experiences with UDL

Amanda: But, Edith, Eliana, turning over to your side from your perspective as students; has universal design made classrooms more inclusive in your opinion? Or have you seen examples like that?

Edith: Yeah, so in my opinion, in my experience. Like Josephine mentioned, I only found out about this in the last couple of years as well. It could have been going on or implemented longer than that. I recently only found out about it. I actually found out about it in a math class, in 2022. At that time, I was, you know, dealing with a lot and I really appreciate it. I just assumed that this was a standard for teaching, that if you weren’t able to present what you learned, on paper, then just talking to him about it, explaining it to him how you got to the answers, that was enough. Because, that’s what he was doing with me, except I didn’t know that at the time that that’s what it was. I didn’t know that that was being implemented in real time. So I just, when it came time to testing, because of my, disability at work or at school, I was able to get accommodation, which was very nice. However, this was the first term back in person after COVID. So, I wasn’t familiar about the testing center. I didn’t know the protocol. He said it makes some people more uncomfortable and really just gives them more anxiety, especially with math. Because the people there are not able to explain it to you. So, if you have a question, they can’t break it down for you like I can. So, I am available to stay afterwards. The rest of the class will stay here for an hour and 20 minutes or whatever the time was. But, since you have that, plus an extra hour, you’re welcome to stay here and I will stay here with you. Well, again, that’s another way that he is helping me, right? That the professor is making it more accessible for me. That is making it more inclusive. But, this isn’t something that he’s spelled out for me. This is just something that I experienced and that I assumed was the normal for teachers for professors to experience to give to students. So, those are the ways that I’ve experienced in myself. I do feel like some people learn it, some professors learn it, and they’re able to implement it in every single classroom, every single term. Sometimes you don’t have all the resources to do that. Sometimes you don’t have the time to stay an extra hour and a half every couple of weeks with students. If you have every other week where you test. For example, in another chemistry class, we had to take tests every two weeks. So, that’s not maybe something that he’s able to offer, because he might have to go to his next job, you know? So I do think that it’s a way to offer more inclusivity, but it can also be a challenge for professors. I do acknowledge that.

Elianna: Yeah, kind of touching on what Edith said; some of the accommodations that are made available, like the testing center. Is it really good for everyone? Also, with what Edith said; do we as students know that the teacher is intentionally using universal design in there? Sometimes I think that a teacher has an extremely accessible and flexible class, but they’re not really consciously implementing universal design. Like one class I adore taking ����ֱ�� was E. Nicholas’s stats class. Apparently, he had copied a good bit of his class structure off of another teacher, I don’t quite remember this other teacher’s name. But, what we did in this class was we had the notes, we had everything, and we basically could get all of our homework done and all of our whatever else we need to get done during the lecture and the lab time. Then we could always just go up and ask him questions during exams, and it was just so nice. He also recorded lectures, so then if you couldn’t make it to a class one day, you could just do it from home, do it another time, and it was just lovely. It was my number one class. I went back to the gateway to college advisors that I had and I was like, “Hey, listen, if you have students who are scared of math, tell them to take this person’s class.”. I adored this class, but when I had a meeting with him while discussing it on a teaching week project, I don’t think he mentioned universal design. So, I think there’s ways for teachers to have certain classes that are just better fits for other students. My number one example is when I was first starting in the Gateway to College program was that we had one math teacher for this program, and some people really gelled with her, but a lot of people really didn’t. I really loved her class. I would have taken this woman’s class to the end of the line if I could have gotten all my math credits with her. I loved her structured class. I really felt like I understood the material. But, then there was one girl in my class, in particular, who was having such a stressful time and just so incompatible with how the class was structured versus how she learned. She was having tears multiple times a week. So, for me, this kind of structure is great, but then for other people, it’s not so great. This is kind of touching into that universal design aspect is that, I really do think that there’s going to be some class structures that are going to really fit for some students and not fit for other students. For me, once I couldn’t take this math teacher anymore, it was then like on the hunt to find someone who had a similar structure. That really isn’t information that’s currently out there on course information pages. It’s not out there on My Professor. I had another teacher who a lot of people really liked. But, he was a more loosey goosey teacher. This isn’t to say that he was a bad teacher, or anything like that. It just isn’t compatible. I didn’t really feel like I grasped the concepts as well, because we didn’t have like a packet to follow. I had to keep looking up and down from the board to my page to make sure I was copying things down directly. For me, with how my ADHD is presenting is that gives my brain more time to get distracted and to lose pace with everything. That’s what’s so great about the packet is like basically the main structure is already written down and I can just focus on the concept. If we’re talking about math, it’s like, there’s different ways to break down the concepts that some people are going to get more than others. I was taking a pre calc class and I had to find other ways to understand the sign, co-sign, everything like that and understand that wheel in a way that made sense to my brain versus how the teacher understood that and communicated that information. So, I definitely feel like, if we’re talking universal design, I don’t know if every class can really be welcoming to every student. I think it’s more so a case of where as teachers figuring out how you break down your information, how you have your class set up, and then making that more easily communicable, and then helping students find teachers and find certain like class structure elements that are best suited for them.

Amanda: Yeah.

Challenges and Solutions in UDL Implementation

Amanda: Eliana, that’s like such a great point and, to me, that’s the better approach to throwing out the term universal design you need to implement this into your classroom. The individualized approach, to each student or maybe even just some students, a teacher could take is really awesome.

Josephine: I think there’s also another term, differentiated learning, which is maybe what we’re talking about me as an instructor would be trying to meet the needs of individual students based specifically on their needs. Which can be, as you can probably imagine, very difficult with class of 24 or more students. But, I considered an extreme version of universal design. I took a class, online, about universal design and the way it was taught using universal design. So, every weekly module or every daily module, whatever the timeframe was, had a list of ways that one could learn whatever that topic was. There were so many choices that it was very anxiety provoking. I felt like I needed to use them all. So, I’ve been very aware of that because when I give students choices I try not to overdo it. Because, as a student, especially with our history of STEM instruction, so many people act like there’s a default way of teaching stem you lecture. Students give back answers, you give a multiple choice test, or whatever it may be, every student gets the same exact experience that when you do something differently it seems that can provoke some fear and anxiety itself. I experienced that, ironically, taking a class about universal design. I ended up spending way too much time. I was watching every video and reading everything they gave me, because I felt like I was going to miss something. I see student hands going up and I was going to ask you, what do you think about that?

Edith: Yeah, hearing you talk about that makes me anxious. The so many overwhelming options, that does make me anxious. Because, I have had professors that say, in the beginning of class, this is how you can get your assignments in. You can email me, you can upload it to D2L, you can do a writing, you can do a painting, you can record yourself explaining it to me. Three to four options for me is good. I don’t know how everyone else’s brain works. But, for me past that, you’re opening up the floodgates. All of a sudden, overwhelmed by the options, the number of options, the number of assignments. Well, if there’s 20 assignments and I could present each one in five different ways, that’s a lot of different options. As you mentioned, you explore all those options on your own just out of curiosity, and that is how my brain works. So, one week I would try this, another week I would try that, next week I’m like, “I don’t know, should I go back to that? I got an A, what if I don’t get an A? What if I get a B?”. Like I said, it opens up the floodgates. For me, I have found that when the professors just say, “hey, these are the top three ways that students like to present the information to me. If those don’t work for you and you find another way that has. Feel free to pull me aside, feel free to email me, feel free to text me and just let me know. Because, I’m more than willing to open up other options for you if you know that this has worked for you in the past.”. So, I think that is a greater way of presenting universal learning to students. Because, I don’t feel like it’s on the professor’s task to explore or explain every single option. To say, “Hey, I’m open to options. However you want to learn. And you’ve known that it has worked for you in the past. Feel free to let me know, and we can work with each other.”.

Elianna: The specter of choice paralysis haunts us all. Josephine, getting back to what you said was like, online classes are great for certain people to take. But, when the pandemic hit and we all shifted to remote learning, for very good reasons. I had to stop getting an education because my mental health just really started tanking. I know I don’t absorb digital information nearly as well. It takes so much more energy for me to try to keep up with an online class, and then read everything online, and then have to copy paste everything, and then making sure I’m able to traverse all the different websites that we need to traverse. Then being at home, like the way my brain operates is when I’m at home then I’m at home, but if I’m at work, then I can focus. Then there’s how much bandwidth of focus do we have in a day? I’ve seen studies where workers start becoming less efficient after four hours of work day. So, I think this goes into the; what are we getting our education for is the way that our class is currently set up really going to be helpful for when we move into the professional environment. Is that really what we’re set up for? I’ve heard other educators talk about this. When we’re talking about tests is the amount of time that we’re given per term. With the expectation that students are going to memorize and then successfully regurgitate the information that they’ve been given at the end of the term, then that’s how we’re going to know that they’re going to be able to do whatever job that they have to do moving forward. Versus, if you have a job what’s going to happen is you’re going to be at that job, and you’re going to learn the ropes, and you’re going to end up figuring out your own rhythms with that. Then you can’t look up notes. If you were on the job, you could probably look up notes. Or, at least, if we’re talking like med students, is that the med students go through, they do the work, but they also have someone there checking them and making sure that they’re doing everything right. They do have that eventual learned reinforcement, versus what we have in our standard classroom where it’s just the expectation of supportless regurgitation.

Amanda: It’s interesting. Both you and Edith’s points and even Josephine’s point. Because, in terms of pointless regurgitation, the math classes I had to take for vet school programs. It’s flat out acknowledged that I’m never going to use differential calculus. But, I still had to take that class, because it’s a well known gatekeeping class. It’s just one of those open secrets. I remember my math 112 professor, the way I memorized the unit circle, is that I literally correlated the X and Y coordinates to the denominator of the fractions. That’s how I memorized it. That kind of goes back to the whole different approaches to different brains thing and whether or not universal design can even accommodate that. Because, I wouldn’t say I get choice paralysis, like Josephine, Edith, and Eliana described, but I definitely get that. I actually just would prefer to professors just tell me how to submit assignments one way. It’s great that you’re being accommodating or you’re trying to be, but just tell me where I’m supposed to submit this thing because I just want to move on with my life.

Josephine: That kind of goes back to Eliana’s idea, which I’m very intrigued by it. I have the idea that a student, or someone, would help support the matching. How do you see that actually playing out logistically, Eliana? This idea of having students find the right match, pedagogy, or learning environment.

Elianna: So, I’m actually working on a project right now that I’m calling The Tagging Project. So, basically what it is, is that I have a poll set up currently and the idea is that we’re gonna ask students like what parts of a class, that could be present in a class, really help them succeed? Then this would basically be like an ingredient list that a teacher could then just like check off when they have their classes posted to the class sign up section. Then that’s really quick and easy for them to do. They can remove it or change it, add blurbs to add more information. Cause right now what happens is a lot of teachers don’t add a course description to their pages, or maybe they will, maybe they won’t add a syllabus. Which then doesn’t really include a lot of information. I don’t have everything really set in stone right now. Cause I want to be flexible to the needs and the concerns of teachers and other such things that people may have as issues. But, the idea is if you like this teacher for XYZ reasons, this other teacher has similar class structure styles that if you really like this thing, this teacher also does that. Then as you go up, everyone can save time, energy, money, blood, sweat and tears by instead choosing teachers whose classes are structured to be more compatible with how they need to learn.

Heiko: Yeah, those class details pages, they were originally designed if you’re only available to online instructors. Then during the pandemic, they opened it up to all. I was part of a group, where we would give presentations to instructors at different training events to how can you implement the syllabus. But, then how do you put that at scale, especially if it’s not required. So, for online, it’s required. You still don’t get everybody, or sometimes people like me who are a little late because I have a great idea and I’m going to do that first. Before you know it, the weeks have gone by. But if we make that part of the things you have to do to get a class ready, that would be really helpful. That would have to be a shift that could maybe go through the EAC, the Educational Advisory Council. Things like that. I’m totally in support of that idea.

Elianna: Thank you. I’m glad to hear that it’s being positively received. I’ve already met with the staff union about this and heard some of their concerns. I know that one of the common concerns is will I be paid for doing this? Are we going to have common understanding of what the different terms mean? I’m really flexible on how this is going to eventually take shape. But, ideally, the whole idea is that we’re going to figure out ways to help guide students on paths to help them pick teachers that they’re not going to struggle in, then everyone can have a better time. Because, then teachers won’t be paired with students who either have to drop out at a certain point, because it’s just an incompatible situation and you’re also not watching students just drown. They’re not being challenged and then overcoming challenges, they’re just drowning and suffering and everyone’s having a bad time. Kaela has invited me to some of the meetings for the website overhaul that we’re going to have so we can build the system in. So, hopefully we have good things in that. One thing about certain classes is like sometimes people’s brains just work better with different things. So, it’s like I can be in lecture and I can talk with people and I can really prove myself with understanding the concept. But, then when I have to sit down, and read papers, and then write things back; that’s when my brain can sometimes really slow down and it takes a lot of energy out of me. That’s when I have late work and I need extensions and incompletes. I still have like incompletes right now at PSU, because it’s just sitting down and looking at a piece of paper and then not feeling overwhelmed. It’s, how paper heavy is something versus, does the teachers know that I understand the concepts and I can play ball with this. But, then it’s like sitting down and writing the paper is a very different task.

Josephine: Eliana, I might have a little bit of a case study for you. Because, I have mobility and chronic pain issues. I’ve been teaching online now since the beginning of the pandemic. It’s so heartbreaking really when students sign up for the class, I have the flipped format and there’s a lot of group work, collaborative learning, with options. it’s a format that a lot of students have not engaged with before and are expecting me to lecture during the zoom time meetings. So, what I have taken to doing is from the day that the course opens for registration to the day that we start, I send emails, at first once every two weeks, saying here’s the format. Finally, I created a frequently asked page and I linked that to my class details page. I send it in the email with the commonly asked questions helps students who are shopping for classes to understand whether this format is going to work for them. It was kind of rough going for a couple of years. But, now I’ve noticed something and it’s anecdotal, the students that seem to be registering and sticking it out, by sticking it out not the ones that registered at the last minute and never read those emails or the class detail page, but my students seem to be really into the ways that I’m teaching. They’re reading, they’re spending the time in a way that I didn’t necessarily see before. So, I think there is a little bit of that selection happening and it’s very fascinating. I hadn’t thought of it in the same way until today. So, thanks for describing that. I just wanted to say again, I think in STEM instruction; there’s so much of an assumption, not only on the part of students, but also on the part of a lot of faculty, that there’s a certain way it has to be done. It has to be a lecture, it has to be a certain amount of rigor, and everybody seems to define rigor differently and sometimes it can be used in not so nice a way. One of those ways I think that sometimes people define rigor is making everything equal. Every student’s going to have the same exam, or all the exam questions are going to be the same, and they’re all going to be hard because you have to memorize a certain amount. That sort of default way that STEM instruction has been done for decades. But, for 200 years or so, I think it makes it hard for people to try new things. Particularly faculty that are vulnerable, because they’re part time or they’re new and might be even evaluated by someone who’s not knowledgeable about universal design principles or about inclusive practices. So, there are a lot of challenges I think that we are sitting in, in STEM instruction in particular.

Heiko: Yeah, it’s always one of my goals to send out those emails after student register. But, hearing that, that’s really cool. It’s nice, we can automatically just resend that email. That’s more motivating now. But, the other thing I wanted to say; 10, 20 years ago, when we taught, you walked into the classroom. That’s it. That was your first point of contact. There was no online presence. I mean, email was already happening. But, mostly people would leave me a phone message, they would walk into my office. So, part time faculty is not required to do anything two weeks before the class starts and from then on they will get paid also. Even if the class will get cancelled, they will get some payment. So, in this modern time, where things have changed, we need to rethink these ancient practices where you just didn’t have contact with your teacher before you walked in. But, now it can be different, and we should utilize that and how can we, at the same time, manage the– colleagues call it– workload creep. It’s like I made my 80 year old mom plan a vacation with me online. “You can just go online and do that thing.”. We spend hours in front of the computer together and then had the vacation. So, it’s those little things that take not just a few minutes, they take hours off. Especially, I feel like that’s where my neurodiversity comes in. It takes me longer. I have to read things twice or I just, my brain just reads them twice, even if I understood them the first time. But, also on the student side, as you said about the flipped classroom. Right now you have to do that by yourself, but you signed up for class so that you have somebody else help you learn. I feel like that, too. I’m focused a lot of real engagement with the material in class and, at the same time, it’s not everybody’s cup of tea to watch a video about it. How can we communicate that ahead of time well and make it also work for the people that are in my class? Because, it’s the only time that works for their schedule.

Edith: I’ve been hearing us talk about the flipped mode as an option to be more accessible. I think in some professors minds, it gives the class time, an hour and a half, sometimes two hour classes depending on what subject you’re taking, it gives the students that time for open questions. It’s a free for all, you can ask me anything. You can sit here and do your homework. You can do whatever you want to be successful. I understand that, but for me ,personally, I don’t like it. It has not worked. It feels like it’s very heavy, doing the work at home, then trying to schedule time to do that work, to read it, to understand it, and then have to write down notes in case I’m confused, I need more examples to fully understand it, and then I have to do all that and then go prepare to class. So, that seems like it’s a lot of work on my end as a student. So, for me, that hasn’t been a great option. I had two math classes, they were so very different. One was great, flexible, accessible, and the other one was the flipped mode. In math, that did not work. I learn math better when I’m seeing someone actually do it in real time. But, instead we were to watch videos and read notes from another professor, and then implement that when we went to class and do group activities, group work. Which frustrated me. Because, the way my brain works, I need to do it. I need to follow what you’re doing, copy it, and then doing maybe one more time by myself, and boom, I got it. That’s just math. Other subjects are very different. But, when you’re forced to do it as a group, if not everyone in the group is understanding, then you have to in part become the professor, become the teacher, and help explain it to them. I didn’t want to, but this is the way it was explained to us by the professor. If one person falls behind, it’s up to the rest of the group for you guys to explain it to that person, so they can understand and so you can all move forward. Because, we’re being graded as a group. That frustrated me, because I’m the one that’s learning, I’m an individual, and so my grade shouldn’t depend on somebody else’s. how fast they’re learning, how fast they’re keeping up, whether they’re watching the videos at home or not. Because, if they’re not, they’re going to be very confused and that was frustrating for me. We were talking about the course details, available syllabus. Another frustration of mine was that both advisors, at school, and professors didn’t have that available to me when I was thinking about next term. I know we’re on the last three weeks of this term, but I’m thinking about next term, because that helps me with my anxiety. I need to prepare mentally and prepare my calendar for what classes I’m going to take Monday, Tuesday, Wednesday. I’m going to schedule one to three, and then three to five to study. I need to do all of that before I’m actually in the new term. So, I would have to take it upon myself to advocate for myself to email professors and say, “Hey, can I get a copy of your syllabus? I need to get an idea of how work heavy, how writing heavy, how much I have to plan for and how much I have to mentally prepare myself for your class on top of my three other classes that I’m thinking about registering. Because, if it’s too much, then I need to change things up.” I need to do that well before the term starts. So, again, that feels like it’s more work for students. It’s more responsibility for them to take on as opposed to; Eliana was talking about having a system implemented where we can already see what kind of a structure they have prior to that, prior to taking the class, taking that professor, and that would be very helpful. That would alleviate some of the stress, some of the anxiety, and a lot of the planning that it takes for some students to be successful in school. That’s something that I also wanted to say is part of this is that, not every student is prepared to advocate for themselves if something is not working for them, if a professor is not explaining it well enough or in a healthy way. Then it’s up to someone to speak up and that’s very hard. That could be very challenging.

Josephine: It’s a little mind boggling. It’s such a complicated thing we’re talking about today because each person has particular needs. In my career, I think It feels like every term when I’m getting ready for that term, I’m responding to things that didn’t work the prior term. Sometimes it depends on which students did advocate. Then there’s always that potential of not setting it up well and making it worse for other students. Since my modality now is online, I was flipping my classes and discovering the same issues that you talked about. It was frontloading a lot of the work more than was appropriate for the number of credits students were earning and the number of hours expected. But, now that I’m teaching online and I have some remote time in Zoom, I reduced that time to leave more time for the online independent work. Which I think is working better, especially with what I described earlier where students are choosing. At least I hope so. I’ve seen some evidence anecdotally.

Credit Systems, and How it Relates to Neurodivergent Learning

Josephine: But, I guess what I wanted to just say is it’s so complicated to be responding and trying to match the needs. I have one question for the students, after Heiko gets a chance to respond; I’m wondering how many students out there in the world, and instructors for that matter, are aware of the federal regulations about what a credit means? It’s a calculation I do frequently, and I don’t think I’m getting it right. I think I’m still expecting too many hours from students. It’s very difficult because of the way STEM education is. But, the definition of a credit is federal regulation, state regulations, accreditation people that regulate whether we can award credits is one, what they call, a “contact hour” in the classroom. Plus two hours external study time, learning time. So, for a four credit class, that would be 12 hours a week, for a five credit class. Are people aware of that? I guess the secondary question is, does that seem about right? Or do you end up getting more work than that? Just curious.

Amanda: From the student perspective, I’ll just say that it’s very frustrating in terms of how Oregon specifically handles credits. Because, applying for vet school, I was short by half or 1 credit because we have quarter credits. I think most of the world, actually, not just the rest of this country, are on semester credits and I have no idea, for the life of me, who in Oregon thought that was a good idea. But, to answer your question, I have no idea how credits are calculated. I just assume that the five credit classes always had a lot of in class activities, like lab, for example. The STEM or core sciences all have lab. So, that’s my perspective on credits. They’re just this arbitrary number that’s assigned to a class and it, basically, is dependent on how many class hours there are, how much homework or study time is required, and whether or not there is a lab or some kind of practical component.

Heiko: Let me answer that question. So, credit is not the same as credit. There’s lecture credit and there’s lab credit. So, when you take one credit lab, then you are for three hours in the lab, there should be no extra work. Now there’s still lab A and lab B, and so sometimes you might have to do a lab report outside. But, that’s the extent of it. For lecture, you have one hour in class for one credit. Then you are expected to do two hours of homework or study outside. So, that depends how much work there should be done and I feel like, definitely in that, many of my students tell me they do much more than that. What I did want to say to something you said about the flipping the classroom is; a very fantastic instructor, a long time colleague of mine who just retired. She said, “unless it comes out of a student’s mouth, they haven’t actually really understood it. At the same time, many people then take that to, you just watch the videos and then come in class and you practice that and you discuss with that. But, I’m with you. The students who are more in your direction often come to me in my class. But, people are not so into watching the videos. Maybe a little bit, but then really like me to show something, and then they practice, then they can talk. it’s that extra one more time doing it and then I talk about the next thing. So, it’s more back and forth. Also a really well designed, flipped class can also be amazing. There’s a lot of variation. I just want to say that, to the previous topic.

Edith: I wanted to touch on what Josephine said. Personally, before I started college, had no idea what credits were. When I was growing up in California. everything was by semester there and you had certain level of credits. I didn’t understand it though. It wasn’t explained. It wasn’t something that the teachers talked about. It was just, ” it is what it is”. You need to graduate, you need a certain number of credits. I went to college and I realized “so that’s what that means!”. That means that for one four credit class I should be doing four hours in person, usually. It would be like an hour and a half, an hour, 40 minutes, two times a day or two times a week, I should say. Tuesday, Thursday, Monday, or Wednesday, something like that. Then you go home and you do about eight hours or so of work, whether that’s homework or that’s studying. If you’re doing that, chances are you’re going to be successful in that class. That’s what that class requires is the way it was explained to me. It’s very different when you’re taking 12 classes. 3, four credit classes, or when you’re taking 15 credits. Now I understand why they don’t recommend that students take more than 19 credits per term. It’s a lot, it’s a full time job. If you think about it, Going to and from school, driving there. If you have, let’s say, six hours that you’re in a day, or eight hours in a day, that’s as if you’re going to work. You also have to find meals for yourself, and a lot of the times they don’t have cafeterias that are open. Some of the campuses don’t have a working cafeteria, they’re not fully staffed for that. You have to eat out of vending machines, or you have to order something, or you have to pack just a bunch of garbage and eat that. Chips and soda and what have you. So, again, this is all to say that there’s a lot more thought that goes into the credits that some students are not prepared for. That is why it made me very anxious and I didn’t realize that’s what would work for me. As if I reached out to every potential instructor, that I was thinking about having, and then say, “Hey, can you please explain to me what the structure of your classroom is, what your flexibility is on accommodations, is it mandatory like you have to be there every single week? Especially during the fall, I might get very depressed and I just can’t get out of bed. So, am I going to fail this class if I’m not able to make it for three lectures?”. I need to know all of that before I start working with this professor, before I invest that much of myself to go and drive there, do that, and try to do all that work; if I know I’m just like, it’s a one, two, three, and you’re out, you’re going to automatically fail or you’re going to get a withdrawal. That’s a lot to think about for students and some students don’t think about that ahead of time.

Educational Structures and Financial Pressures

Elianna: I think this also goes to touch on, who was this structure built for initially. If we’re talking in, Europe and America, this kind of Western idea; universities were built to educate the young men of upper middle class families, usually upper class families. The whole idea is that they would go, they would also socialize at these places, get to know each other. So, it was built exclusively. It was not built with disabled people in mind. It was built in a very specific sense, like what this system was built for. Who it was built for is still affecting how this happens today. So, it’s like a full credit course, how many people have that energy? Then it’s like getting financial aid is based on how many classes you can take. That was a major problem for me back in 2018, when I was trying to go to OSU is that I was really struggling. I was undiagnosed ADHD and I didn’t have enough tutoring support there, everything was online, and I didn’t realize that I didn’t do well with a lot of online work yet. So, I was in a very bad place mentally and I was experiencing psychosis. I was in so much stress I was in psychosis. When I went to my academic advisor going, “I don’t have enough money with this” or that “I’m scared about this other thing”, “I’m not doing well and I don’t know why and I’m feeling a lot of shame around that”. Then my academic advisor goes, “I want you to graduate on time. So, don’t take fewer classes.”. Because I had gone to her explaining that I was feeling really overwhelmed. So, at that time I was experiencing a new form of suicidality I wasn’t familiar with before because of the psychosis. Who this program is built for the kind of class and the ability that’s expected of people is something to consider when we think about how education is structured and what the expectations are.

Amanda: Thank you, I just want to say, first of all; Elianna, thank you for sharing that with all of us. I think we’ve all been in places of extreme academic trouble. Going back to the credit idea. Honestly, credits to me are almost completely arbitrary to this day. Because, how much time I spend on homework and projects is completely dependent on how difficult I find the classes completely subject dependent. I can have a five credit course where the homework supposed to take me three hours and sometimes it just takes me 10 minutes. But, in math classes, especially when I was getting back into STEM. My Stats 1 class, it would take me like three hours. I want to say it was like stat one here is like four credits or probably even longer than that ,if I’m being honest with just how long. Because I had to use Excel as well in that class. I ended up getting anxiety fairly recently just last summer because, I didn’t experience psychosis like you did. But, what happened was I had to take, I want to say, 15 credits in three months. Would not recommend that to anyone listening to this, would not recommend that to anyone here. I was so stressed out. I was studying all the time even though these were subjects I liked, they all related to animals. These are all subjects I was good at, they were all anatomy and physiology related. But, I still ended up developing severe anxiety because I was studying all the time. So, going back to the point about universal design; it really is dependent on the student. Each student’s gonna have their own limitations, each student is gonna have their own talents. We’ve talked pretty extensively about examples, we’ve seen attempts of it trying to be implemented or different ideas that instructors had of it, but how practical is it? Should administrators really be touting words like universal learning, or UDL, when it should be more like individualized approaches, like what Eliana and Edith have been talking about?

Josephine: Yeah, I think something that happens in education is that we often have a catchphrase or an initiative, like universal design, or something else. Bringing it back to what’s good teaching, and what do students need, and what’s going to help them learn, and what’s going to help us assess whether they learned. It can be difficult to do that. It can be time consuming. It takes experience and professional development learning, on our part, as instructors. There’s just so much that needs to happen. But, I think we can’t say, “Oh, this one thing is going to solve everything.”. In fact, with universal learning or, universal design for learning, you can think of it as one component of a good teaching practice principles like bringing in the student’s identity. That’s a different thing. They’re not mutually exclusive, you can’t say it’s all going to be this and not the other, or it’s only flip learning. Because, flip learning can incorporate active learning and collaborative learning and student identity and inclusion. So, I think too often we find ourselves kind of trapped looking for that one thing that’s going to solve all the problems and I don’t think that exists, unfortunately.

Elianna: Yeah. One thing I think about, when we’re talking about education and how it’s developed, we don’t really offer people space to be sick or unwell for a while. So, it’s like I have a lot of uncompleted work because of depression and burnout. Then I knew someone in my gateway to college program who had to leave and then come back later because she needed a lot of operative surgeries done, and that meant missing a lot of classes. She had to like, leave that and then start back at square one, basically, with taking certain classes. Because, of the regulations that they had for this. I don’t remember exactly what her operations were, but she needed a lot of ” R&R time” from these surgeries. So, what kind of timeline do we expect for people? Not even just talking about an individual class or a structure that we have, or the kind of front loading of information, so then people can make better choices. But, if someone was sick, if someone had something go wrong with them health wise, or there was a family emergency and they had to step away from classes for a bit, can people afford to take classes over again? That’s one of my concerns with my overdue work, is that can I afford to take these classes over again, versus having to keep on track? I think there is this kind of like intersection here with money and disability, or just like the human life versus expectations and education and the kind of pacing that’s there.

Edith: I think that universal learning would be great if it was fully implemented with all the professors and every school explained and carefully, thought out. So, everyone knew their options. So, students knew that they could advocate for themselves and what to ask for. Because, if you don’t know what’s available to you, you don’t know what to ask for. You don’t know what you need to be different, to be successful. If you want to go into nursing, for example; you’re going to go to a CC, a community college, and you’re going to do two years of prerequisites, then you’re going to transfer to a four year and you’re going to finish the rest of the two years there, and then you’ll come out with your bachelor’s in nursing, and then you can go on and be a nurse. But, what’s not explained to you is that it is nearly impossible to finish those two years worth of classes in time. I don’t know anybody that did it unless they were either not working or very young and were being supported by parents and by financial aid. Because, that plays a huge factor in this. I know that’s one of the topics, as well as, accessibility and marginalized groups. It took me four years to finish a two year degree, and I’m not ashamed of that. Because, I had a lot of ups and downs, some of them good, some of them bad, during those four years. When I hit the two year mark, I was thinking I need to have graduated. I should have been done. A little bit of guilt, a little bit of shame comes into that. But, then at the same time, you come out four years later and you’re like, “wow, I accomplished so much! I was there to support my friend through this. Somebody was supporting me through this couple of months that I needed to be away from school. I couldn’t focus on anything, let alone trying to take 15 credits in one term so I can be on track.”. So, I definitely have had advisors that have said the same thing that they told Eliana. “We don’t want you to fall behind, so you’re going to need to do this if you want to stay on track. If you want to meet your goals of graduating in two years time.”. Again, I say that it’s nearly impossible because it is; life does happen. For me as an older student and a person that’s of color; there’s certain responsibilities, there are certain things that are part of my culture. Like taking care of your parents, helping them out, taking care of family. That plays into the full time job of being a student. So, I’m already expected to learn, go to school, do my homework, study for 40 hours a week, then I also have to work to pay for my health insurance. On top of that, I have to take my parents to doctor’s appointments. I have to schedule their appointments. I have to remind them of their appointments. I have to have a life. I have to go out with friends, try to make friends. That’s a lot. So, I think that the idea of it is great, but it’s not properly implemented and that, right now, that’s part of why there’s so much anxiety in the world of academic right now. For students, it is very hard to do things. I understand why there’s so much anxiety, why there’s so much mental health in younger people, younger students. Why they’re being diagnosed with anxiety at six, seven years old. I understand it, because It’s an expectation that’s, in a way, unspoken of you need to do this. You need to be on time. You need to reach the goal that everyone else is reaching. You need to graduate. You need to move on up with your friends, with your classmates. If you fall behind, that’s going to start a chain reaction of bad events. So, for me, it’s a hopeful thing. I wish that it worked better. I wish that more professors were great at implementing this, and for also just advocating for students when students don’t know that they have those options. I wish It was easier, I wish it was better implemented, and I’m hopeful that in the future it will be. But, right now we’re in the steps where it’s still very frustrating and we’re just dragging along, trying to be successful.

Heiko: Thank you, Edith.

Student-Instructor Communication

Heiko: What you are saying, from the student side, I also want to bring in from the instructor side. First of all, we are also a particular type of learner. So, we often teach how we learn. Not always, but it’s definitely heavily influenced by our own experiences, for better and, sadly often, worse. But, even if we go over that, we have certain characteristics. Some of us neurodiverse, or we are just different. The approach teaching a class vastly different. We all have a certain capability of extending ourselves and I think it is absolutely necessary that we always work on doing that. That we learn and continue that. I love the project of who is who, so that people can find each other that are a good match. I really liked that. Also in terms of realism, for part time instructors, they teach one class and they’re teaching completely different classes next time or three of them or two of them, but not the same ones and have one or two or three different classes and never the same. So, we are sharing on the math department, a lot of materials. And yet, there are also people they [sic] always like their own materials because it’s part of who they are. So, for me, there’s so much included for every quiz I write that it’s a lot to ask for. Rather than asking, “is that realistically?”, I’m hoping that we come to the point that we can say, “what can we do or implement so that it becomes more realistic?”. That I feel is the advantage of working with math and science. Like, technologically, people are pretty savvy, for the most part. Not everybody knows everything. and we all like our own little thing, but there is a lot of knowledge and ability to combine, maybe streamline some things and make them more universal in support of universal design.

Amanda: Thank you, Heiko and Edith. I want to say that, to me, the biggest issue about implementation of universal learning is, again, not only that does everyone have a different idea of what it is or what it means, it’s also the fact that a lot of students aren’t aware of it. But, to me, it goes into the fact that administrators are making a lot of assumptions about what teachers can do realistically, and then teachers are making a lot of assumptions about what students are capable of realistically. Rather than coming up with these implementations or terms or universal design, equitable learning, differential learning, yada yada; quite frankly, those are buzzwords. I’m sorry, they don’t really mean anything to me at the end. I can’t speak for everyone else here. But, just talk to your students. Like how Edith and Eliana are talking to both of you right now, not that either of them are your students. I know this isn’t in the questions, but to everyone here, how often do you talk to instructors like this, and professors Josephine and Heiko, how often do you talk to students like this?

The Role of Feedback in Education

Heiko: Yeah, it reminds me of something that our PCC vice president, Katie Ho, did a study at some point of like what students want most. The number one thing came that instructors care. We can put whatever words we wanted, but then we actually care that we care about what our students say, what they are, giving us feedback. Students do give feedback, even if they don’t say anything. You see the way they walk in. You can walk up to them. You can check in. You see the work they turn in or don’t turn it. It speaks volumes. So, I feel like there are lots of progress has been made, at least in math.

Josephine: I think it’s starting to happen, Heiko. I was just going to reflect on the fact that it’s a hard decision to make when you want to talk to students, but you don’t want to use class time for the students valuable time. Time is so valuable. It’s hard to ask for conversations like this one or conversations Amanda’s organized outside of our courses has been, to me, very valuable and we need to do more of that. Sometimes there are social media groups that provide that opportunity as well, which I think are great. But, one place that I’ve started integrating it is in asking students to write very small short reflections on their learning of a specific topic, or on how an assignment went, or if they’re doing collaborative work, how did your group approach the assignment and what were the pros and cons. These little snippets of reflective time or metacognition thinking about how they’re learning have been the most valuable. Cause I’m learning from the students and educational research shows that those little metacognitive moments, where you’re thinking about your learning, actually help students improve their learning. So, for me, that’s where I’ve landed in asking students what they think and what’s working.

Edith: I want to share two things. To answer your question for me, I talked to professors like this, not openly about everything; what’s worked, what hasn’t worked. But every term that I was thinking about taking a class, I would send out this long email saying, “hey professor, I’m considering taking your class. I want to take it, because it’s going to meet the prerequisite, need for this program, or I need to take it, or I want to take it for it just for fun”, what have you? Then I would go on to, “can you please explain to me the structure of your class? Can you please explain what flexibility you have on assignments deadlines? If possible, do you have a syllabus that you could share with me? It doesn’t have to be the syllabus for next term. It can be a past syllabus. I just need to get a rough idea of how much time I need to schedule for this, for that, and to see if this class would be a good fit with my other classes that I’m considering for this upcoming term.”. Then I would go on to say, “the reason why I’m asking this of you; because I have severe anxiety, because I need to plan things out this far ahead in order to not feel like I’m already falling behind. Because, if I don’t do this by weeks ahead of time and I just take a class, I am so filled with anxiety that first week.”. After my first experience of having one class, that I was prepared for be dropped last minute, two days before the class was due to start they canceled the class because it was low in enrollment rate. I was shocked. I didn’t even know that was an option. I didn’t know that could happen. So, after that, I was like, “Oh, my gosh! Now I have to rewrite my whole schedule. I have to work everything around. This is going to throw everything out of whack.”. So, for me, that is something that I’ve been used to doing for years. It was actually an idea from a professor. They said, “I think that this would be beneficial for future people to know. So, if you want to write to your future professors and let them know, this is why I’m asking for this extra help or resources or explanation, this would be helpful for them to know and for you to know. That way you’re advocating for yourself. You’re mentally preparing yourself. You’re taking that initiative that a lot of people are going to want to have as a student as apart of their classroom.”. So, that’s in a way to answer that question. When Josephine was answering about how the communication that she has with students; another part of my decision making for possible classes to take was rate my professor. That was something that I was going to ask; is that something that you, as a professor, take into consideration? Do you care about that feedback that’s on there? Because that is something that I actually found very helpful. I would say, “okay, well, this is what they say. They say they’re flexible. They say that they’re this and that or that.”. But, then I would go on there and I would read, “this professor is not flexible at all. They were not very sympathetic. I think they’re very jaded and maybe they’re just used to students lying or coming up with excuses. Not a very caring individual. I would not recommend.” So, I would be like, “Whoa, okay. If there’s a few comments that are similar, maybe that’s not going to be a good fit for me.”. So, that is the resource that’s available and for me as a student, I found helpful. So, I was just curious.

Josephine: Rate My Professor has a history of toxicity. It’s a company running it. I’ve seen outright lies from students. I don’t read mine because it’s very toxic and it can be very hurtful. Early on when it first opened, I was teaching in Rhode Island a long time ago, I had two comments one term on Rate My Professor. It was a student who had gotten an A. It was the only A in the class, the students were struggling that term, and that student went off on a rant saying my class was way too easy and it wasn’t appropriate and it was harmful to him. The opposite was, “oh, she’s a horrible professor. It was too mean, everybody failed.”. It was both ends and that was just a small example of the toxicity. I’ve heard some real horror stories from colleagues, and I’ve seen outright lies about faculty members that I know. I can also see, as a student, why it would feel very useful. But, just keep in mind that sometimes people go there because they’re very angry and are trying to hurt someone. It’s frustrating because it’d be nice if you could guarantee a place where students just could be honest and express their experiences. But, I think the Rate My Professor platform can be toxic and they just barely got rid of the red hot chili peppers, or whatever that were rating people’s appearance, not too long ago. Sorry, I feel kind of strongly about that site. I’ve seen people get extremely hurt by it and I’ve had to consult colleagues who made the mistake of opening it. Most people I know won’t open it.

Amanda: No need to apologies. It’s very understandable why you and your colleagues be upset. I actually have used rate my professor to select teachers, but I look for trends in the information. I don’t really look at the reviews themselves, if that makes sense.

Elianna: That’s another one of the reasons behind why I want the tagging system. Rate my professor, there’s no way to really fact check it in a sense to see what’s going on there, why people are leaving certain reviews. It doesn’t provide information that people need all the time for what would influence a teacher. Going back to the original question of do I try to contact teachers. Well, number one, I have a lot of residual shame and stuff from when I was an undiagnosed neurodivergent kid. I had one teacher who all the time told me that I’m just making excuses. So, I still have this feeling of; who am I to go waltzing into this teacher’s email and go, “I’m scared of this.”. Prove yourself to me that you know you’re gonna be a good fit for my educational needs and now here I am making excuses for not getting work done. So, it’s not really something I have a conversation with any prospective, or current, professor of mine. Now I’ve been able to have conversations with professors or professors I’ve had in the past, but I’m no longer taking. It’s like this relationship of respect and authority where there’s a level of professionalism that’s there and then of course residual shame of like you’re just making excuses. So, it’s really concerning where it’s like I’ll talk with people as far as it is about getting work done, or maybe I’m going to be a little late on something, or I need a little bit of help with this choice paralysis that’s come up. But, otherwise I think for a lot of people, because of just the way that things are structured, that there’s a lot of shame for neurodiverse students and needing accommodations or needing things to be a little bit different or it’s what kind of workload might be present for a class.

Amanda: Yeah, to what Eliana said, definitely. I feel like if Eliana’s tagging system or even a similar system exists, I feel like my professor would hopefully become obsolete. Because, I’ve had to look at professors for my own neurodivergent needs. How heavy are they on homework and how strict are they on tests and how unfair are they on tests? That’s the trend I look for. Because, what screws me over in a lot of classes is whether or not professors lie to students about what’s going to be on a test. I hate mind games like that. For any instructors listening, don’t do that. You’re not doing yourself or your students any favors like that. Do you believe that UDL is the right direction to go in education, why or why not?

Edith: As a student, that’s very active in their own advocacy journey. I’m hopeful that we can make it more accessible, that we can make it more equitable. I’m also hopeful that teachers, professors, get more pay. That they get more resources. That they are given more options so that they can pass on those options, they’re also very limited. I understand that and it frustrates me because I’ve had some great professors and I feel so bad for them. They are giving it their all, you could tell that they are, and that they’re getting so little in return. So, I hope that in a few years, and maybe 10 years, this can be very, very different and that there is way more communication. That it’s received well. Right now, I feel like whenever students, or schools are asking for a survey, or they’re asking for feedback; they’re looking for a certain kind of feedback and when that’s not received, the feedback that they get is disheartening. It changes things and maybe they’re not as open next time and maybe they don’t ask for those surveys for that feedback next time. That’s frustrating, because I heard once that when you ask people to reply to something, you’re either going to get the people that have the best service or they have the worst service. Those are the only people most likely to reply, not the in between people. Again, as a student, I need to share, I need to advocate for myself, for other people, especially people of color, that have been taught to respect your elders. Respect the professionals, it’s their job, you don’t talk back, you don’t disagree. This is somebody that is older and wiser and you need to show them a certain level of respect automatically. You can’t say that you are not learning or that it’s not helpful for you. That’s just something that’s part of our culture, I feel like. So, for me, I’m talking to professors, as if they’re just another person. That’s the way I see them. They deserve a certain level of respect, yes. But, they also need to afford me that. If they don’t know what’s different about me or how I have found success in the past, then we’re just going to butt heads and they’re not going to appreciate me being there, being moody, and I’m not going to appreciate them being very unflexible to help me. So, I’m very open about that. I’m very hopeful for the future. I think right now it’s not at a place where I would say, “Oh yeah, it’s great! It’s great for everyone”. Especially people with disabilities, people of color, students of color, and even first time college students. First generation students, it’s very hard, very difficult. I’m very hopeful. I don’t think we’re there yet, though.

Elianna: Yeah, and getting on this, how do we define UDL? This has been our whole conversation in a way. The implementation of UDL really depends on what we mean by UDL. I feel like that’s where we’re at this point in the conversation.

Josephine: Yeah, I happened to open a web page that has an infographic about UDL and it made me think about how it could be useful. I think the utility of it would be more as a vehicle for reflection for instructors. Again, a lot of us came into teaching not because we were educated on how to teach. We’ve learned as we’ve gone and continuous improvement is extremely important in what we do. I think having opportunities ourselves for reflecting on our own practice is probably the most valuable thing. For me, it has certainly been. So, UDL as a formalized thing with infographics that lists things like access, support, engagement, representation, action, expression. Those are good words and I think just having something that you can point to that gives us a vehicle for reflection on our own practices in teaching, I think that’s the most value that one can find with UDL and other things like it.

Amanda: Professor Heiko, what do you think?

Heiko: Yeah, I’m coming back to something you said earlier, Amanda. There are other words that are being used to describe something similar. There are things that are unique to this particular concept, but there are other things like inclusive design, equitable design, and all of that is trying to get at that same core through different aspects and avenues. All of that, I feel like it’s absolutely the right direction. For me, universal design has been always part of that, too. So, yeah, I will continue to do that. What I like about the universal design aspect, specifically, is that it emphasizes the design of it all. Especially in general and equity work as well, the system is designed to get certain outcomes and we want different outcomes, so we need to have a different system. We are working often on improving and overhauling and stuff, or maybe make it all totally new, whatever it is, but that I feel, that, that part I really like about the universal design thing. So, I do think it’s going in the right direction and hopefully we’ll add a lot more students being successful, especially in our higher math and higher science classes. I would really like to see that.

Final Thoughts

Amanda: So, we’re coming up on the end of our conversation, but the one final question I do want to ask all of you is, did you find it valuable talking about universal design with each other? As students, did you find it valuable to talk to instructors? Instructors, did you find it valuable to talk to students?

Edith: I loved this conversation. I think that in the past, I have been burned by an educated professional that asked for feedback. We collectively, as a group, are very open and giving our feedback and they were argumentative and they were getting defensive and then they were victim blaming. So, this isn’t just a person of color thing, but you hold on to those traumatic events that you have lived and it makes you not want to share, it makes you not want to open up. Like Eliana was saying earlier, you do feel that guilt of, “I’m asking for something different, I’m asking for an accommodation.”. There’s a little bit of a shame that comes with that, because you want to be on par with everyone else. With a person that has a disability, all you want is to be quote-unquote normal. But, then there’s a sense of relief that comes with, “well, I spoke my piece and I was heard, I was valid, and they weren’t argumentative. They were open to it and they were receptive to the feedback.” I feel like this; in the future, a student doesn’t have to live through the hardships that I have lived. That maybe both parties can leave that conversation feeling better and hopeful for the future. That’s kind of my takeaway from this is that, yeah, I feel like everyone here was very receptive to each other. I think we’ve all had good and bad moments when it comes to the educational system as both students and professors. I understand their side too, there’s only so much you can do with the limited resources that are available to you. So, thank you. Thank you all for being receptive.

Josephine: Thank you, Edith. I feel heard and I appreciated being able to listen and learn from both of you, Eliana, Edith, and Amanda too, of course. Just being able to sit as human beings and talk through something and recognize that’s what we are. We all have things that we struggle with and challenges and doing the right thing, even when we’re trying to do the right thing. I think that’s wonderful. It was a nice conversation. I appreciated it.

Heiko: Yeah, I also want to thank you all for this conversation. It’s always amazing how many more thoughts we can generate and ideas and sharing each other’s thoughts and learning from each other. So, definitely got new ideas and also new motivation to bring it back to the math faculty. One thing I feel like I haven’t expressed, we are sometimes at the point also with colleagues where we are all wanting the same thing, but really strongly disagreeing about how to get there and how to achieve that. That we in a way at least in words all share, by not listening to students and having this conversation. Math department meeting, we had 100 instructors and 100 students present, and had actually conversations, group discussions and stuff. I wonder what could happen? How would that influence our decisions, our opinions about certain things. So, that’s what I’m taking.

Elianna: I really enjoyed the conversation. I really like that we had this friendly meeting from both sides of the academic perspective of teachers and students. Where we get to talk about our issues and see eye to eye. I really enjoyed this and I think it’s productive to have these kind of conversations. I hope there will be more in the future

Amanda: Thank you, and I hope to actually invite all of you back for a conversation in the future to both on the podcast, or maybe in other meetings. But, the reason I really wanted to have this panel discussion between students and teachers is to show that students and teachers can have these productive conversations about learning and strategies for learning, and that it makes sense to have them together. Because, Teachers can’t talk about teaching students without talking to students about their needs. That’s just not going to happen, but similarly administrators can’t tell teachers how to teach without actually teaching a class themselves. So, that’s ultimately what I wanted to showcase today in today’s conversation and everyone here did splendidly. Thank you so much for that. With that, I’m Amanda signing off and I hope everyone joins me for the next episode.

Outro

Amanda: Thank you for listening to today’s Let’s Talk: Autism episode. As you heard, the definition and implementation of UDL differs between people because it comes down to personal interpretation. Additionally, the distance between students and instructors can cause reluctance and fear to start discussions, forcing students to rely on controversial sources like Rate My Professor. But as Eliana pointed out, a tagging system with specific keywords would be a better investigative tool, with both students and instructors working together to implement the system. Edith and myself also regularly advocate and self identify our disabilities to professors so we can better explain our needs in the classroom. Open discussions like this are what is needed to better improve relationship between students and instructors and the learning material. As supported by professors Josephine and Heiko, who point out that the difficulties of implementing UDL not only come from personal interpretation, but even when they learn it, it can be daunting because the materials are so widespread. Overall, I hope listeners found this discussion to be productive and that this encourages institutions to invite students to speak and participate in teaching conferences and other events that roll out concepts like UDL. Thank you and be sure to tune in next time.

Outro Disclaimer

Asher: Thank you for listening to Let’s Talk, ����ֱ��’s broadcast about disability culture. Find more information and resources concerning this episode and others at . This episode was produced by the Let’s Talk Podcast Collective as a collaborative effort between students, the Accessible Education and Disability Resource Department, and the PCC Multimedia Department. We air new episodes on our home website, our channel, X Ray 91.1 FM and 107.1 FM and KBOO Radio 90.7 FM.

Episode Transcript

Edited by Hanna “Asher” Sham

Introduction to Let’s Talk! Autism

Asher: You’re listening to Let’s Talk. Let’s Talk is a digital space for students ����ֱ�� experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the opinions or positions of ����ֱ��, PCC Foundation, or our community partners. We broadcast on our home website on on X Ray 91. 1 FM and 107. 1 FM and KBOO Community Radio 90. 7 FM.

Amanda: Welcome to today’s Let’s Talk! Autism episode. I am joined today by professors Josephine Pino and Heiko Spoddeck. Thank you both so much for being here today to talk to me about STEM culture and just the recent movements in STEM culture.

Meet the Guests: Professors Josephine Pino and Heiko Spoddeck

Josephine: For having us.

Heiko: Yes, thank you, Amanda.

Amanda: No, thank you for being here. so, we’re going to go ahead and just start with introductions. If you could give your name, your pronouns, occupation, and disability, that would be great. To start off with, my name is Amanda. My pronouns are she, her. My occupation is currently a PCC advocate, specifically like autistic and neurodivergent students. I’m currently applying to veterinary school, and I am high functioning autistic.

Josephine: Hi, I’m Josephine Pino. My pronouns are she, her. I am a biology instructor ����ֱ��. And I’m relatively recently disabled with musculoskeletal mobility issues and chronic pain, including migraine.

Heiko: I’m Heiko Spadek. My pronouns are he, him, his. I teach math at ����ֱ��, or PCC, I’m using a wheelchair, and I’m also neurodiverse in some various ways that have been unidentified.

Amanda: Thank you. This is going to be a pretty free flowing conversation, so answer however you feel comfortable, and I’m looking forward to having a great conversation with you both. What courses do you teach, and how long have you been teaching them?

Josephine: I, currently, am teaching, the biology series of courses. Biology 1, 2, and 3 for science majors, mostly pre meds and pre vet, other science majors. I’ve been teaching that literally since I started teaching about 25 years ago. But, also a large chunk of my career was teaching biotechnology, career technical education for students seeking careers in that field. And I’ve taught a variety of other courses, including marine biology. So, quite a variety, but all biology related.

Heiko: So, I’ve been teaching ����ֱ�� for 18 years, a variety of math classes. The one set of classes that I’ve been teaching this entire time, is actually the self paced math lab classes. Helping students, either refresh after a long absence from math or get some extra support as they’re taking classes. If they’re bored in their classes, to fly ahead, and review to where they can be in the class; where they feel more challenged. Fall term, I’ll be teaching that set of classes. And then in addition, to that, college level math or nowadays it’s called pre-calculus.

Personal Journeys in STEM

Amanda: Thank you. So, my background with STEM is; well, I mentioned I am applying to vet school, and I did finish an animal science degree, from Oregon State, this past spring. Which I’m pretty excited about, because that was a degree I’ve wanted since I was a small child. I have wanted to be a veterinarian since I was a small child. But, my initial run with university, in my 20s was actually a lot rougher. Because I wasn’t diagnosed with autism until I was 34. So, I was not able to access the resources I needed to succeed at university. Not that this is all Oregon State’s fault, I’m responsible for my own actions and I’m not trying to place the blame on Oregon State by any means. But, what I will say is the structure of classes they had was very traditional in the sense of STEM, which is what we’re going to talk about today. So, there were a lot of barriers in place that I wasn’t even aware of. And it was, I basically just couldn’t keep up with the coursework and I was forced to change to liberal studies. So, I’ve been on the side of the art. I don’t want to say art because I’m not an artist by any stretch of the imagination, like, Professor Pino, Josephine here. I’ve definitely talked to Josephine about how much I hated art assignments in biology. I couldn’t draw a cell to save my own life. I can tell you what’s in the cell. I could draw you different phases of the cell division process, especially anaphase. But, I can’t draw it. Anyways, I feel like I’ve experienced a lot of different shifts with STEM, or I’ve experienced very interesting things in STEM as an autistic woman. So, I’m very excited to talk with Josephine and Heiko about, not only their experiences, but also just having careers in STEM.

Shifts in STEM Culture

Amanda: With that in mind, how has STEM culture shifted since you started teaching? What are the biggest differences that you notice now and from the past?

Heiko: I’ve been thinking about that question a lot and one thing I feel that is definitely shifting; though nothing is ever shifting 100%, they’re definitely not there yet, is that more and more people are interested in to invite people into STEM and to have people learn and to believe that everybody can learn it. Send the message out that everybody can learn it, as inclusive as a classroom as possible. So, I feel like the ratio of interest and wanting to do that has significantly increased. The ability to do it has increased, but I feel like we are not yet there, where we should be. What I feel is still lagging behind, is as a society to believe that our children and young people can learn math. That they can learn math, that they can learn science, and that the first thing they hear is like, “Oh, God! I’m so sorry you have to take a math class.”. Well, of course they feel sorry for themselves that they math class. If you said like, “Yay! That’s the most exciting and interesting thing ever in the world!”. that would come as a very different attitude or the expectation like reading, writing; we expect everybody to read and write to some level. In a good way, that expectation I would like to see in math that it’s like, of course, you can learn it and here are the resources to learn. I feel like lots of movement has been happening from the teacher side. I hope more will happen and more also from society’s side.

Josephine: Yeah, Heiko. It’s interesting I agree totally. Things have changed in terms of that awareness and I think it’s a very sincere desire overall to bring more people in and to remove barriers. But, what I find interesting is in many ways; there’s a big conflict between something that’s so inherent with instructor identity. I would speak for myself, when I started in university learning, it was just a given that, you had to be perfect. You had to be able bodied, you had to be able to do whatever it took. Yet to move across the country back and forth five times; that has let up a little bit? But, not in practice and I think there’s an instructor identity that’s so tied to that. For many of us, maybe, maybe not, I think even currently people are being taught in those circumstances. That it’s very hard to go from point A to point B. We know what’s right, but we don’t necessarily have the skill set, or our own personal experience, or our own reflective time to make that leap to do something new. The culture itself is still pushing us towards, “Oh, we’re going to welcome people. We’re going to do things differently.”. It shouldn’t be “innovation”, right? It should be “iteration” and “improvement”. Speaking from my own experience, over my whole career, if I’ve done something a little different, I’ve had varying levels of acceptance among colleagues about whether that was the right thing to do. That is very depending on who I was working with in any given institution.

Inclusivity in STEM Education

Amanda: So, that’s very interesting, both of your responses. I haven’t taught any STEM courses, this is going to be purely from the perspective of the student, just as a disclaimer. With Heiko’s, answer, I’m not gonna lie, I dreaded math classes completely. Not necessarily because of the difficulty; because interestingly, when I was younger, math was very fluid. But, it was also a lot more simple. My poor wife, she worked with me constantly. Like my wife has always been gifted academically. So, I get where Hiko was saying, where it’s that response of, I feel sorry for you. And a lot of students, even my peers, still feel that way about math. Because, it’s just presented in such a really abstract, really difficult way. I also agree with you too, Josephine. Because, I’ve been in school a long time, like I was at university in my 20s, I went back to school through PCC at first in 2018. After I was diagnosed, it was very interesting to see the efforts of inclusion. I say efforts very loosely because it felt much more like an obligation. I will say PCC is a lot better about that than most institutions I’ve studied in. PCC at least tries to have a culture, at least tries to have a space for disabled students. Whereas, I felt like other universities I’ve studied at, they provide you accommodations if you have the paperwork and if you go through the process, which in itself is a barrier, as all three of us know. But, really, it’s gonna be completely dependent on professor and their own views of disability and whether or not they think the student should succeed in their class, and maybe that’s a little cynical on my end. But, I really find that it comes down to the individual professors themselves and how they not only feel about disability, but how they feel about what class they’re teaching. Because I’ve had professors who are really into their identity. As you said, Josephine, but I’ve also had a lot of professors who, quite frankly, are just there for the paycheck and don’t really care if you succeed or not. So, it’s very interesting. But, at least from my point of view, things have gotten at least slightly better, at least on the student side. Because, I think universities have had to make more efforts to be at least a little more inclusive, otherwise funding gets cut for the lack of a better way of saying it. But, maybe I’m wrong about that. As a follow up question, would you say that there’s like a motivation for universities or STEM to be more inclusive on the funding side or not?

Heiko: I feel like, in general, the disability movement has, basically happened because of lawsuits, right? so, I still hear that till today, that the only thing, anybody is scared of is a lawsuit. So, I think the same is true for most educational institutions. But, as an disabled person who’s working full time, I’m like, “yeah, I’d like to file a lawsuit for this and this and that”. When I don’t have the time. So, that itself is, again, a barrier to where I can just relax and sleep on the airplane. So, all these little things add up. You have a class here, then you have a class here, you have three classes. Then you like have to complain about this, you have to complain about this, and you file a lawsuit. It’s not gonna happen for most people. A few people thankfully have taken the time, and money, and energy with support of others often, to do that and get us to where we are here today. I mean, that’s wh����ֱ�� also benefited a lot of the work of Kaela Parks, ever since she came on. She’s taken it on a whole different level. If you can explain to them that this is a lawsuit thingy, then they’ll jump. Now, that said, ����ֱ�� I do feel there has been a shift. Also, as an employee with a disability, I just am about to change campuses. I need some adjustments and stuff. The ADA team met with me; very different experience than the last time I needed them many years ago. so it’s like, “Wow! That is cool!”. again, that said, there are many years I never needed anybody; because I had wonderful supervisors who just, could do it. I did it all and this time also my supervisor worked with them, but now we have a team who can actually advise and support. It’s no longer, “Oh, what are the legal requirements?”. But, it’s like, “Hey, what do you need?”. And, they know better than my supervisor. So, they helped and supported both of us. That is where I’m hoping ultimately things will go to the students. That as all of us teachers will do that; “Hey, what do you need and how can I provide that?”. But, there are still too many teachers who don’t have the knowledge or the interests to do that.

Josephine: Can I pick up on that? Because I think it goes back to this idea that any institution, even society, can say this should be done. It really is about a collaboration, individual effort, and shared understanding and shared value. That is a culture change and I don’t think we’re at that point of culture change. We know this is what should happen, but does each of us really get what that means? The more I think about this, and this is also from my own experience because I used to teach in a very traditional way and I’ve changed over the years due to a number of reasons. But, what changed me probably the most was teaching in career technical education because the student’s goal was at the forefront. So, I was teaching biotech courses where students were there getting an education for a job. I happen to believe most students are there getting education because they want a better future. But, we, as people, who pursued the more academic paths for the most part, those of us teaching STEM, pursued a PHD or a master’s degree for the sake of knowledge acquisition. We don’t necessarily always know about what jobs are out there, how students could use their STEM learning. Speaking from my past, teaching with the perspective of this person going down this academic path; when I started teaching biotech, I thought, wait a minute, these students all have these wonderful goals they’re able to articulate to me. My job is to help them meet those goals. And that was very transformative to me in teaching. I try to carry that into my non career technical education teaching as a biology instructor who’s teaching in a more traditional pathway. Bringing that in can be very difficult. It’s very dissonant even to me, because my biology learning was very aligned with the way that we expect STEM teaching and learning to be. Very different than the biotech instruction that I could do in a more natural dynamic way with the students goals in mind. I don’t know if that makes sense. But, the contrast between those two types of teaching for me has been, something that causes me to reflect every day. And, it’s hard to bring the practices that are more student directed into our traditional STEM courses. Because, of where they’re going next and just a million other reasons, including the academic politics of the place you happen to be in.

The STEAM Debate: Integrating Art into STEM

Amanda: No, that’s really interesting. Thank you both. There is currently a shift to incorporate art into STEM; sometimes referred to as STEAM. What do you think of this shift, and do you think it will help or hurt STEM’s inclusivity challenges? The reason I’m bringing this question up right now is because both of you are directly talking about the cultural shifts of STEM.

Josephine: So, it’s an interesting one. I think there are two ways that STEM could become STEAM. One is in a very transactional way, like “we’re going to incorporate art now!”. And, people do that even with incorporating equity, right? Or diversity. They’ll say, “today’s our day that we’re incorporating examples of black scientists.”. that is not good. I had that happen in oceanography classes way back when. Where, here’s an example of a female scientist. “Oh, look! Sally Ride is an astronaut.”. It’s more than that. we need to incorporate inclusivity and diversity in a natural dynamic way where we’re respectful and we’re including everybody as belonging there. STEM converting to STEAM can help with that. Because, in my opinion, if I’m doing it right, when I do it right, students recognize they have options. If a student says, “I’m not comfortable with art”, and I’ve given them space to tell me, “I’d rather write a long essay about this”, as opposed to drawing a picture, or they’re showing me, A podcast instead of showing me some art. I have to be open I don’t want to force the art into it. But, I also remind students, “hey! Art is incorporated in how you learn.”. For many students, the visual infographics that we have in our books, and our resources, are very useful to them in learning. It doesn’t mean they’re useful to everybody. But, art is incorporated already, it’s there. It’s also there in their future careers and the applications. For example, they could be working with a graphic designer to help communicate what they’ve learned. I think if we’re open to various ways of doing it and this sort of idea of universally designing it, giving people options and agency. I think it can be a real improvement to STEM inclusivity.

Heiko: Yeah. When I first heard of the idea, I thought, “oh, cool!”. As you were talking, Josephine, I was thinking there are, for me, three aspects to it. One is the one you brought up, individually allow different ways of learning or expression. I did once also like a project and I said, you can write about it, you can sing about it, you can do music about it. And, actually, one of my students, every week, they had to do like, built ups until they had the whole project together. They gave me, every week, a song that they liked and the reasons why and somebody else made a video. And, so people, they took up the idea and clearly had enjoyed it. Another person, once in my 111 class, at the time college algebra class. He would always come and show me in Desmos. if you Google Desmos art, you get like what art you can make out of math functions, using Desmos functions and piece it together. It’s amazing what people do. So, the second part, it’s like, you don’t use art to support your learning or expression, but you’re actually using the STEM knowledge, on this case math knowledge, to make art. Which is also a very cool thing. The third thing. What I dreamt of when I first heard about STEAM, is like an integrated thing. Like there’s something like really bringing in the art and not having like, “oh, you’re either a artistic person or you’re a science major or something.”. I feel like, partially it’s in music. A lot of people do music and math or something. But, it’s always like you do music and then you do math. That integration of like, how can we bring that really in? I feel like I have not yet seen that. I like really believe this would help the STEM. I’ve yet to see something really spike with that idea, but I would love to see that.

Josephine: Recently, I saw an example, and I participated in it. So, I’m a poet and I was in a building in Washington, D. C., and there was an art installation that was scientific poetry. What got me, and I was thinking, “this is strange, what’s different about this?”, it’s that art was bringing in science. As opposed to science being forced to bring in art. It was creative writing and poetry recognizing that science could contribute to its field. And, it’s the opposite of what we often talk about with STEAM and it made me realize it’s out there. When I talk to students at the beginning of the term and I send out a survey, “let’s get to know each other”, and they can share whatever they want about their interests. There’s almost like this hesitation or fear to share that they write poetry or they play the guitar. And, I found when I started sharing more about what I do, there was more of an openness and it helped with connection. With each other and with me. It didn’t have to be art, it might have been someone really loves animals and they wanted to share pictures of their reptiles. Basically, give people options and welcome individuals for who they are and what they can bring to the group. It seems easy, but it can be hard I think in the STEM culture to make time for that or feel okay, making time for it.

Amanda: It’s interesting because to be honest with both of you I don’t know how I feel about the concept of STEAM versus STEM. Not because I have anything against art because, believe me, I can’t do art worth anything. I can’t draw a cell to save my life. I’m not an artist in the slightest. So, believe me, I have a lot of respect for people who actually can do art of any form, music, drawing, poetry, et cetera. But, what I would say about it is, to me, art’s always been a part of STEM, I just think it’s really weird we don’t acknowledge it. Like, we talk about the art assignments drawing a cell. I can’t draw the figure myself, but I can tell you what’s in the picture, I can tell you exactly what’s doing what. To me, there’s obviously going to be more artistically inclined students in the class. So, you can pair two students up; one could be like me, who’s more verbal. Needs things more linear, like a straight line. And, you have another student who’s drawing, and they learn well by drawing, and they just need to visualize the figure. Organic chemistry an infamous class, in my opinion, with STEM. Because, there’s actually quite a lot of art in organic chemistry. It was a very interesting shift from general chem to organic chem, because general chemistry is honestly, I would say, 90 percent math. Like, I would say not even calculus, just algebra. Algebra two, maybe? But, very basic math. Anyways, that’s my point, it’s like, art is everywhere in science and if you go back to historical figures, like Leonardo da Vinci. He’s probably the most famous one. He was “the Mona Lisa”, and you look at all of his engineering designs, he definitely appreciated art. He’s the reason why art is so important and feels like engineering, you have to know what you’re looking at in order to propose a design. For me, It’s kind of pointless to have STEAM because art has always been in STEM. My question is, how do we appreciate it more? How do we normalize it?

Josephine: Oh, yeah. No, I loved listening to that. Because, I think you hit the nail on the head in many ways because the siloing of art. I mean, we silo chemistry, biology, physics, different kinds of math, different subdisciplines of biology. Art is over here somewhere. But, those are artificial constructions they’re not even worldwide constructions, right? If I’m hearing what you said, Amanda, you’re saying; well, let’s let things be integrated and not keep to the siloing by saying, “Okay, now we’ve put another letter in the word STEM and now it’s STEAM. but, these things are still separate, but we’re going to carry them around together.”. Yeah, you got me thinking now on that one.

Amanda: Yeah, and that’s what I mean. It’s to me, if you have a separate designation from STEM versus STEAM, that only is going to make it worse, in my opinion. Because, you’re going to have traditionalists who are really attached to their STEM identity. Like, I have met people like that, both students and professors. I think that’s actually very unfortunate. Because, to me, first of all, they’re very elitist, and I don’t agree with a lot of what they say about academics, or about how they view other people. Because, I think that whole thought process is just exclusionary and there’s multiple types of intelligence, and that thought process by itself excludes all of those. But, I also don’t agree with people who are completely on the art side who say that, silence is soulless and doesn’t take into account the human experience, or just, whatever. I’ve met both people on those sides, but on the other side, or the non STEM side, it comes from a lot of prejudice that STEM traditionalists put on them to make them feel inadequate. So, there’s that bitterness and that cultural clash. Where it’s like they want to be themselves, but they can’t because traditional STEM has really largely taken over academic culture, at least from the public perception of it. If that makes sense. Heiko can definitely talk more on this than me, but fractals are all about making beautiful artwork with math. Even in biology, microbiology especially, and I don’t know if you’ve seen this, Josephine. But, at PSU, when I was taking microbiology lab, there was literally this whole booklet, or slideshow, of art where they were basically stained bacteria cells. And those are beautiful. I’m not particularly interested in bacteria, but I will say that they are beautiful. I can’t draw those either!

Josephine: I have a former student who has an Instagram account that’s all about beautiful images taken under the microscope.

Amanda: yeah, exactly. So, that’s what I mean. It’s like photography. That’s another thing about art at STEM that, to me, isn’t talked about. So, I guess I’m curious on both of your perspectives; art has always been a part of STEM, but why do you think people don’t really talk about that?

Heiko: That’s a very good question. There’s also this whole thing, that we still do to this day, and no matter what I say it’s like people are like, “yeah, I know. it’s what I believe”. what people believe is that it’s genetically predetermined what you are. But, it is just like so not true. It’s just not true. It is like our earliest influences and environment that get us in a certain direction. And, where our liking goes and where we put our effort. Where we spent most of our childhood on is what we will be most good at. So, if that is drawing, then we’ll be great at drawing. If that is singing, we’ll be singing. If that is solving math problems, I will be solving math problems. If that is kicking a ball, then I will be kicking a ball. Whatever it is that we do a lot in childhood, we will be good at later on. when people say, “Oh, you’re born with a talent.”. No, no, no. You just did a lot of that. And, you got better and better and better just by doing it. But, then it seems to be harder to cross over between certain things. So, if you have like painted it a lot, you’re then less likely to go over into suddenly you’ll be studying math. If you’ve done a lot of math, then maybe a little bit more likely on the other way around. But, you’re still not as likely to then become a pianist or something like that. You usually then, go with the math. So, suddenly people are like, “Oh, I’m good at this and that’s good enough.”. Like, in order to be also good at the other, you need to practice a lot. So, that feels like a separation of, is becoming good at drawing going to help me in math. Could be, but we are not encouraging. Like, “Oh, you can draw so well! You’re going to be really good at math!”. You hear that more if you’re like, “Oh, you’re really good in music. You should have easier times at distractions or something. But, these are the thoughts that come to my mind.

Josephine: Yeah, I don’t know, in what grade in this country do we separate the subjects? Middle school maybe? Maybe even younger? Art is a separate time in the day. And, we have everything labeled. Then we have what Heiko spoke about. Telling people or setting things up for people to believe that they are this, they are good at that, they’re not good at the other, and then we enforce that by separating the times during the day, and the classrooms, and the teachers, and the specializations. And, that starts so young. I think another thing that ties to this has to do with this almost tradition or culture of thinking of, well science education I’ll speak to, and I know math has another issue that’s similar. STEM education as being about the content and the memorization. You hear students saying, “oh, I hate taking science because I have to memorize too many things.”, and then what do we do? We teach it that way, and then we assess for the grades that way. Even if we do these other things, again speaking from my own experience, I’m going to bring a little art into it. But, then how do I evaluate what they’re doing. It’s difficult to figure out how to evaluate in a way I was never evaluated before to determine my grade. Especially, because I was someone who got good grades on multiple choice and memorization tests, and that didn’t make me a good scientist by any means, whatsoever. So, it’s a challenge because we have this concept of science education is being tied to content. Knowledge, content memorization, and so it’s really hard to integrate and then evaluate that, because we are also so focused, at least in our culture in this country, on performance and grades. That’s the ticket to the next thing that you need to do. We’re not necessarily matching or marrying how we teach, what we’re evaluating, to how that information is going to be applied and used for that person, or those people, to meet their goals. There’s a lot of change that has to happen. The conversations like this are very helpful to me in trying to make that change.

Heiko: Also, we don’t utilize people’s strengths to teach them what we would like them to get better at. Even when we try, already, somebody told students so strongly that they have to think math now. They can’t think about their bank account. If I ask people, “you have two dollars and you spend five. What’s going to happen?”. Most of them can tell you that they’re three dollars short. If I give them two minus five, they’re like, “I don’t know what to do.”. There’s something also in the education that, you have to think a certain way in order to solve this math problem. No, you don’t. If that was the case, I wouldn’t teach a math and I would definitely not have studied physics. I could never think the way I was supposed to think. But, I could think other ways. But, I see a lot of hesitancy from students to even dare that. They’re like, “oh, I see that.”, and then they will forget all about their bank account again.

Amanda: To the separating of subjects and even to what you just said, Heiko, about different students strengths and how they associate math with their lives. Again, this is just my perspective as a student, there’s never been a separation per se. Because I’ve always seen these different elements incorporated in different classes. We talk about chemistry, for example; people think of Breaking Bad in a chemistry setup. But, the reality is there’s just so much math involved, you have to know how to do measurements, you have to know how concentration is varying. Otherwise, you’re not going to get the product. You have a specific amount of reactants, and you’re going to get a specific amount of product of that, and if any of those measurements are wrong, your whole experiment’s going to be off. So, you have elements of that, and then you’re going back to the art thing; biology, history, they all have pictures. You’re not gonna relate the information without pictures, especially history. It’s like you’re just not gonna care because it’s just a bunch of text. At least for me, that’s the case. I get the idea of separate classes for these things, because I think it’s more of just about breaking up the day so kids don’t have to sit for six hours a day in one place. At least, to me, that’s why they did that. But, just from my own experience and how I learn; if I could focus an entire calculus course on animals, or in some way, shape, or form, I can promise you I’d be a lot more excited about calculus. Physics, I hated the physics series. I’m not gonna lie to the two of you, that is my least favorite STEM course even compared to Stats. And, the reason I hated physics so much, is because a lot of it was just really engineering based and I’m like, “oh, my god!”. Well, Physics 1, not so much. Physics 1 and 2, were actually pretty relevant. Because, you’re dealing with impact, you’re dealing with pressure. Whereas physics 3, it’s all about electricity, essentially. I did not like Physics 3. I just couldn’t find a way to relate that information to what I wanted to study, and I just really had to force myself to actually be interested in it and try to perform. I never did as well in those classes because of that, and it’s just disregarding the student’s individual interests. So, to me, it’s like, “okay, we can have a class. But, why not just let the students learn the concepts in a way that pertains to their interests?”.

Personal Experiences with Learning Styles

Amanda: I’ve always been interested in animals, so I definitely would have been one of those kids that categorized as being really good with animals. But, I also would have been categorized as not good at science just because of my undiagnosed autism, and just the different way I learned math. I just couldn’t learn math the traditional way like Heiko could.

Heiko: There’s something you just said, that you don’t want to learn something, right?

The Role of Animal Science in STEM Education

Heiko: So, this is something I’ve noticed that, understandably, students think like, “oh, those physicists, or those mathematicians, make me take a physics class or math class.”. It’s actually not true. It’s actually your animal science people who make you take this class. They say, “we want you to know this.”, and then we just say, “okay.”. We offer them because you tell us. that your students need them and at this level. Now once in a while we’ll also challenge them. It’s like “why do they need it?”. But, for the most part it’s the people that are actually doing the work that need to say to those educators, our students don’t really need that. They need more of this or more of that.

Engaging Students in STEM

Heiko: The other thing is, when you ask me, “what is interesting? Isn’t there anything more exciting than having a slide and having like a ball go down the slide?”. Or, it’s like, “Oh, what’s it about electricity? I’m seeing all these electrons running through the wires.”, and, “Wow, look at all the electricity we are using. Look at computers and all these electrons running around and doing their work for us.”. Like, “I want to know how that works. Why can I use my computer? Why can I do all this stuff?”. I feel like different instructors have different capacity to look at it from their students perspective. But, I’ve said my share and now we like learning and I try to make it exciting for them, and look at it from their perspective. But, I think a lot of people say, “I thought this is really cool. I think this is really important. So, I’m going to teach that. Because, others say that you should be in my math class. Now it’s my duty to give you this knowledge.”. So, it’s a complex system of like, who’s putting up the barrier. And, a little bit all of us.

Barriers in STEM Education

Josephine: Heiko, you’ve brought so many things into my mind that I’ve been reflecting on in the last couple of years, and one of them is, “what is the science class for?”. Basically, if there’s something like animal science that leads to veterinary medicine, that’s a very applied science. There’s a lot of technology and one could, and should; in my opinion — we in the academy, in STEM education– should map, “why is this course there?”. Map it to why the animal science people 40 years ago, 50, 80 years ago decided that particular course… There are reasons, there are probably very good reasons. But, we do not make ourselves aware of them, we do not help our colleagues be aware of them, we do not help our students be aware of where those are. I think we’re at a point where it’s hard to do that just because of barriers that we encounter as professionals in our own institutions. Some advice that I got early on as an instructor, from one of my mentors, I was very lucky to have mentors, was whenever you run up against a wall, let the students do the work. So, one of the things I’m thinking right now that could benefit both me and my students is to have a guided activity where students are mapping what they’re learning in my course to their future goals. That is a very scary prospect, which I think is part of this culture thing, right? Am I going to try something like that where it could totally fail? And then, I’ve lost all that content time. We have these competing goals, as instructors, that we have this pressure for the content. But, at the same time, what if I spent a week of class time where students were actually mapping what we have in our curriculum to what they as individuals plan to do in their lives? I think that would be very powerful and it’s probably a better thing to do. But, it is scary.

Heiko: I’ve been teaching, pre calculus Online and so I do some discussions of like go out and find somebody to talk to either in your field or Google, or whatever you do, and find out where do we need functions in your field and where you are interested. Where do you need exponential functions, where do you need logarithmic functions? And people are like, “wow! I had no idea!”. So, more pointed. I don’t say it for mapping for the whole thing, but these key points that are our key topics. Where people are like, “wow!”, or even they’re like, “well, not in my field. But, I found in that field. Now that sounds cool that they need this and how they’re using it.”. So, then it’s not like a big one week thing, but a little assignment. You can warm it up. Tell your colleagues “look how exciting that was for my students!”, then maybe make it bigger.

Josephine: Yeah.

Amanda: So, from the student perspective, at least in the veterinary medicine perspective, it’s an open secret that calculus one is just kind of uses as an application barrier, to be honest with the two of you. And yes, I am aware that it’s not the physics teachers or the math teachers setting the barriers. It’s like the DBM programs or, wherever I’m applying to. So, yeah, I think Heiko’s point about, real live applications. ����ֱ�� how functions are used, like, I actually have no idea how functions are used in veterinary medicine, to be honest with the two of you, beyond research, or biomedical science, or technology even. But, it’s like, my primary interest is surgery. So, yeah. That is something interesting to think about. Thank you, Heiko.

Heiko: you know that a vending machine is a function?

Amanda: I did not.

Heiko: You have one input, then you’ll get an output. you have multiple possible, but if you give an input, something comes out as a function.

Addressing Ableism and Elitism in STEM

Amanda: STEM classes often come with an elitist and ableist reputation. Do you believe this is true, and what is the most common misconception the public has about STEM?

Josephine: So, this might be about STEM; who can become a STEM professional? I think there is a common misconception that unless you can go all the way to becoming the lab coat scientist, you may as well not bother in STEM education. that one is the most heartbreaking one for me. Because, anybody can learn STEM. Anyone can become a STEM professional. If I wanted to go study STEM at my age and with the physical barriers I have, I could not become a volcanologist or something like that. Somebody that’s going to climb volcanoes. I’m not going to do it. There are real barriers, but it doesn’t mean I can’t learn about that field. A person who can’t see can still learn about microbes, tiny microorganisms. A person who can’t stand in a lab for three hours twice or three times a week can still engage in the processes of science. They can still apply the scientific method to asking questions and understanding the natural world. It’s such a loss of so much talent and skill and curiosity that we don’t acknowledge that, and we still have systems that keep those barriers. a lot of it is a mental barrier. how does someone learn about microbiology if they’re told they don’t have the physical ability to go in and learn about it, for example. I happen to be teaching courses online remotely with some synchronous time and my students are very scientific. they’re not walking around in a laboratory and they haven’t learned every technology, but they’re still learning science. this misconception, you can’t learn science without the physicality of it, I think is a shame.

Heiko: You made me remember, a presentation I once saw, a YouTube video, where a guy is taking a piece of paper, and he said, like, every baby is a scientist. it’s like, what do they do? You give them a piece of paper, they grab it, they tear it, they taste it, and crumble it up, throw it away. Like, we are born to investigate things. kids look at little bugs, and I can spend hours to just investigate the grass and all of that. So, somewhere it’s more the question; where along the education are we training it out of our Children, and our young people, to no longer be curious, no longer be interested? I do feel lot of it is that children don’t get their questions answered. if you answer children’s questions, and where their brain is at and what they’re curious about, you will keep their curiosity that they will get more questions than a lot of adults. We had sometimes like, “Ugh! Another question? Another question?”. But, any answer could generates more questions. So, where the elitism comes in, for me, is; if you ask the right questions, then you can be in the club. If you don’t, or you look at it from a different viewpoint, you ask the wrong question– I’m putting quotation marks– then It’s so harsh, the judgment. It’s like, “you’re never gonna get this. Don’t worry, don’t bother.”. then of course that’s where all the sexism and racism comes in. If your gender is a female, and, or, your color is not perfectly white, it’s automatically very likely that the question doesn’t get answered, period. Like automatically your question is invalid. So, ableism comes in there then as well, right? Anybody can know we are teaching children from very early age on who is allowed in. And we are very specifically in training children not to ask questions, or don’t ask that many questions. if we actually, from early age, like from the moment that children can ask questions, answer that question, or do our best to find somebody who knows the answer, as parents, as teachers, I think things will change. we don’t have to know. We can go take our kid to the library. We can Google together. as an instructor, I can like, “I don’t know the question. Let me go to a colleague and ask that question and find your answer.”. if we just did that, maybe we could make headway and invite people really back and not having that whole thing; “You should know the answer.”, or ” that’s irrelevant.”. The brain disengages, the person disengages.

Josephine: Yeah, I think there’s a real common habit, in STEM, that if someone asked the wrong question, as you said, Heiko, or they asked it at the wrong time, or they tried to engage and get an answer and they failed, or got it wrong, or made an error. That’s it for them. People have studied this phenomenon where a lot of times students will just quit, especially students of color will often quit after the first bad grade, or the first failed test. one interesting thing I read about one of the studies was they showed that, those students weren’t lost from higher ed. They just said, “hey, that STEM culture is not for me.”, and they went and pursued something different. So, that’s the loss to the STEM field and a gain, to another field, probably. But, it’s also sad because that was the chosen field of those people that did that. I think this is one of the big ironies of STEM to me is that doing science, doing math, doing engineering, you’re not going to be successful unless you make a mistake and fix it, it’s an iterative process. Failure is an inherently extremely important part of it and that’s not congruent with how we teach and evaluate students. We don’t say, “Oh, you made a mistake. Let’s go back.”. there are some very real barriers for us as instructors. We don’t have all the time in the world, because many of us didn’t learn that way. We don’t know how to engage in doing it. Like, ����ֱ��. We have a 10 week term and a finals week. So, everybody’s on this treadmill that’s going faster and faster. We’re not really on a trip. We’re on an academic treadmill, and we can’t stop and appreciate what we’ve learned and how we might have fixed an error. As an instructor, I don’t always feel like I have the comfort and the time to do what I would be doing if I was teaching someone one on one over the period of time that individual needed. So, we’ve got some barriers just related to how the system is set up itself. in my worst moments, those make me very sad, because I’m not sure how we address those.

Amanda: So, I definitely agree with the points both of you have made. And, again from the student perspective, I did not have the right brain. So, it’s very much kind of like what Heiko said, where if I didn’t have the right brain, I was basically forced out of STEM and, I want to say 19 or 20, when I was forced to give up veterinary medicine. I was like super sad and depressed because I was like my lifelong dream. that was because I just could not learn in the way the instructors were teaching. And for the longest time, I actually believed I was stupid. Because, it wasn’t just them, it was like other people in my life, just based on how my brain worked and how they didn’t know how to teach me math, that said, “there’s always like a vet tech. You could always be a vet tech.”. Which I find ironic because I think the vet tech program ����ֱ�� is very intense, I think that’s a very difficult program. So, I think that’s actually pretty insulting in and of itself. to the program, not me. But, anyways, I do think there’s a lot of elitism. like, I’m able bodied, I’m white, and I’m female, but the interesting thing about animal science is that, It’s actually majority women, believe it or not. I’ve seen a couple of students of color there, and from what I can tell; I didn’t ask how their experience was, obviously, because I didn’t really know them beyond class. But, from what I can tell, at least the teachers I’ve had, They weren’t trying to make things difficult for students in particular, but they just did not want to accommodate students when it came to online difficulties. or they just didn’t want to adjust their schedule. To what Heiko said, and to what you said, Josephine, about asking the right question. Even in the calc course I’m taking right now, I think this professor’s honestly terrible for several reasons. It’s not just that he’s dry, and he’s gotten a little bit better about this next point I’m gonna make, but at the beginning, he was actually very condescending. Whenever someone asked him to clarify something, he would just say, “Oh, are you talking about the thing I talked about five minutes ago?”, “Oh wait, are you talking about this? You should have learned this in Algebra 2.” or, “are you talking about this? You should know, I already talked about this.” Basically. he just made it very uncomfortable to answer questions, like, I only went to office hours with him once to talk about difficulties I was having, and We got so frustrated with each other that we ended the session amicably. But, I made the decision to just go to PCC online tutoring after that. Cause, I could just tell this was not going to work. So, it’s not just about asking the right questions it’s about also, just the instructors, what attitude do you have? Like, what attitude are you bringing to the table here? Why are you so against students asking questions and not remembering everything from every single math class they ever took? Cause some people just forget. for example, some of the questions I had; I’m taking Math 251, and I took Math 112 in winter, but there was like, a gap between terms. So, it’s not that I couldn’t learn the material and it’s not that I hadn’t learned the material already from Math 112. But. I just didn’t remember every single thing. So, I really feel like part of the elitism issue with STEM, at least from what I’ve seen with instructors, is just the attitude. Where it’s like, students have to remember everything from every previous class, students have to learn everything streamlined from what they teach in class, and they have to somehow generate this interest in a topic they know nothing about. Like, I actually hate it when professors ask a student, “what are your questions about? What I just talked about, or this research project that I’m gonna force you to do?”. I’m like, “we know nothing about this. We don’t know what questions to ask, and to ask a question that means that we have to have an interest in it. If there’s no interest in this, the only thing you’re going to get is a lot of artificial stuff that doesn’t mean anything. So, that’s my take on the elitism issue in STEM. Maybe this is a little unfair of me to say, but I feel like at least some professors or students, really pride themselves on the fact that STEM has such an elitist culture. Because, to them, it’s like they’re the best and the brightest and they’re going to succeed the most in life. So, I feel like that kind of feeds into the public misconception of STEM as well. My experience is, like what you said, Josephine; I think anyone can learn STEM, absolutely. Because, to me, the material is difficult but it’s not impossible. It’s about accommodating each other, and respecting each other’s different abilities. I don’t know when instructors, and students, lose that ability to respect each other. But, at some point it happens, and I don’t know how to get that back.

Josephine: Yeah, so in some academic communities. Instructors who have, quote unquote, too many high grades are suspect. Vilified in some cases, which is very ironic, right? If your students are getting a high grade, you’re doing your best at evaluating their knowledge, and you’re teaching well, they’re going to get higher grades. At least, that’s our goal, right? That’s what we say our goal is. But yet, this is documented in the literature, that there is a culture in STEM often where Entire academic communities, I’m not talking about PCC. But, maybe at a university, and I’d say, “well, you got to adjust your grade to curve if your grades are significantly higher than your colleagues grades.”. I have a friend who wrote about this happening in high schools too, this idea that you’re not a good instructor unless you have a certain fail rate. Which is you’re not, quote unquote, rigorous enough. Which is absolutely ludicrous, because you’re failing if your students are failing. So, that came from somewhere. It’s hard to get past that, in that it’s embedded in our minds so young when we’re first learning that the STEM instructor is the enemy and your goal is to just work hard and pull yourself up by your bootstraps to get that A, to grab those points. It’s really bizarre when you step back and look at it, in my opinion.

Heiko: Yeah. Like, imagine all your students get full points. You still want to grade on a curve and say a certain amount of people can only get Fs. it’s also like, what do you tell your students? You say what you need for an A, for B, for C, and then if you achieve that, you’ve achieved that end of story. But, there are still instructors who still do it. what I also then heard from other instructors, other institutions, we still have a long way to go.

Amanda: Relating to the high failure rate, this actually relates to the next question. what do education administrators or officials need to understand about teaching STEM in order for these courses to become more accessible? I’ve heard what Josephine said too. And, I think that’s preposterous as well. I just want to know where that comes from, it’s like, do officials and administrators want STEM instructors to have a high failure rate, or is that just something from someplace else?

Heiko: for us, the push is to have higher pathway, for math. so, I’ve had moments where not all my students get an A, but all my students have passed. I mean, not all. So, “all”, for me, means the ones who actually took the finals. there are some people who dropped out, in my classes, usually due to life circumstances once in a while. they don’t agree with the class, or it’s material early on. So, there are some withdrawals. I also feel from administration that there’s a certain, “we don’t like math.”. I don’t know if it’s the same with the rest of STEM? The “STE” part. but, with math, I feel not all. There are also some who are, like, comfortable with math. But, there are a lot of things we need to change. So, don’t get me wrong, there’s this underlying thing of, how is it said that students have to do math? We should go like, “students get to do math.”. We need to acknowledge that there’s been a lot of trauma and horrible things done in the name of math. And yet, bring encouragement and bring excitement in about STEM and what it has to offer. I’d like to see that from administration also, not just constantly going like that to us, what they don’t want us to do to instructors by saying this is wrong, and this is wrong. I’m not saying everybody, we have a wonderful provider and also wonderful VP. So, it’s not everybody who’s doing that, but there’s still a general thing I feel also needs to change and needs to be a general, more positive, hopeful vibe about STEM. Let’s come. Let’s together. Anybody who wants to, should be there and will be with you. Tell us what you need to make it happen and hear the things we’ve done already.

Josephine: Yeah, I need time to hear Heiko talk about these ideas and the new things that are happening. we don’t have a culture of doing that. I’ve been in institutions that are smaller. Where it’s a lot easier. I mean, I started 25 years ago and I was at a smaller community college and all the STEM people were in the same building with offices next to each other. it was very natural to go down the hall and say, “Oh, I tried this thing with my class today and it worked!”, Or “it failed! Do you have any advice for me?”. And, so it was really a cultural situation where there was a shared value around the good stuff and the excitement. there was less of my own fear in talking to my physicist friends and my mathematician friends. Because, I had some bad experiences myself in undergraduate years. that’s where I kind of grew to really understand, “wow! Music and physics go together! That’s really cool!”, And that’s because I had this natural ability to talk to colleagues. So, I guess I feel like we need leadership and space and time to recognize that working together and having time to learn together is really important and there has to be a way to bake that in. I know it costs money and we have a lot of people who are teaching part time who choose to learn more and work with colleagues, and people are teaching full time that do the same. But, there’s still a lot of, choice on the individual instructors on whether to do that. I don’t think mandating it is the answer, because then it just becomes rouge and performative. But, what I do feel is the answer is; giving that time and space for the joy to be found and for incentives. Motivations. sometimes the incentive could just be, it’s the right thing to do, but people don’t know it’s the right thing to do because their own experience has been so limited. At our institution right now, ����ֱ��, there’s no incentive in terms of moving up in your professional title. I’m not going to argue the pros and cons, but that’s something that some institutions use that we don’t have. You can pretty much continue on your job doing things the old traditional way, or innovating and doing things that are new. It’s going to cost you more time and effort to do the latter. So, these are issues that I would love to discuss with institutional leaders, administrators. I don’t think they’re easy answers, but just recognizing what some of those barriers are. For example, I’ve been in rooms where I’ve heard administrators say, “well, I don’t understand why faculty don’t just do X, Y, and Z.”. “Why don’t they use equitable grading?”. It takes time, and money, and conferences, and reflection to do those sorts of changes. And, we do not always have that. We have to do it on our own time and often, on our own time, we need to be tending to our own health, just to be honest.

Amanda: Yeah, and my question comes from the fact that, again, there was that whole culture of high failure rate, or you’re not a good professor if you’re not failing like a certain amount of your students, or whatever. But, I also have heard the term equitable grading and universal learning design. And, to me, those are two separate conversation. And I have my own pretty strong opinions about both. I really wish administrators and officials would take the approach, I talked about earlier, by just recognizing the fact that the subjects are integrated with each other. Math is integrated, and chemistry, and obviously, physics, but chemistry especially. Biology is interesting because there actually are a lot of physics in biology as well. That’s like another element I wish administrators and officials would kind of give space for, just implementing the subjects in a way, or at least allowing the students to explore the subjects in a way that allows them to explore their natural interests and how it pertains to them. Like Heiko’s idea of, looking at how functions pertain to each student’s specific career path or interest. That’s brilliant. But, to me, it’s just always been a little odd, the fact that each subject has been treated as its own entity in STEM. I feel like a lot of people are really overwhelmed by biochem because of that. I liked biochem, but I will say the way I took biochemistry, I do not recommend it for anyone. Because, it was a four week accelerated program. That’s kind of my perspective on it, I just really wish officials and administrators would just stop treating STEM as a separate entity from all of academia and stop treating each course as a separate entity from each other. Because, really they’re all interrelated and they all have different talents and attributes they bring to society.

Josephine: so, Amanda, the styling of the subjects, I think it would be really helpful if all instructors knew more about the history of why science is Separated the way it is. There’s a history of colonialism that has really led to how academics has emerged and just stepping back and understanding that is a very powerful thing. So, as far as the role of administrators give people time to learn that and reflect on it, I think that can go a very long way to get people to start reflecting on everything we do. Why are we doing this? Is it because it’s the right way for all the students here to learn in an equitable way, or is it because there’s a tradition of doing it that way? That came from these very real events of the past that weren’t always morally right? to put it gently. I think the other thing; I just wish institutional leaders, or even at the higher level, the state, anybody who’s making the rules. The creditors, would just stop and think; instructors in higher ed, for the most part, haven’t been trained as teachers. We come from the long traditions, many of us. We come from wherever we come as individuals. But, instructors, for the most part, on day one, in my experience, teach the way they were taught. What else are you going to do? If you’re lucky and you had some mentorship early, you can change. You might use some more modern practices that are equitable, that are accepting and not ableist. But, your instructors are surviving in our roles as well. So, change can’t be instant, and it’s going to take some support. That requires culture change, and it’s not easy. That’s what I think people need to realize.

Amanda: Yeah. That’s another reason why I feel like STEAM and STEM being separate as well is also counterproductive. Because, to me, it’s better to take advantage and leverage a system that’s already in place, acknowledge what’s already there. Like, the whole art’s always been in STEM. We just don’t really give it space or appreciation or discussion. So, to me, just taking advantage of that will increase inclusivity automatically. I’m not saying it’s going to be a perfect system. To me, instructors also need training on how to teach, like you said. But, I think at the very least it will make it less scary to students, who either find STEM very intimidating or, wanted to pursue STEM and were put off by a different subject in STEM or something. It’s like STEM, to me, is open to all students. That’s kind of my two cents on it.

Advice for STEM Students

Amanda: So we’re coming up on the end of our discussion. But, before we leave, I wanted to ask both of you, what is your advice to students thinking of pursuing a STEM career?

Heiko: The advice is always for what we have now for the system, right? So, one of the things, based on our discussion, believe that you can do it, and then gather what you need for that. So, number one. Find people who can explain it so that you can understand, and then, alongside that, study according to your own learning style. Find what you need, find that out, and just stick with it and believe that, that’s the right thing and that, that is enough to get you what you need. You need to know what you need, and that’s the right thing, and that you can do it. And then, practice, practice, practice. It’s a system we have now. Ideally, you will all help us build a better system where it’s way more inclusive and everything. But, right now, I think that would be my advice.

Josephine: I agree with everything you said, Heiko. I guess I’ll add to that, advice to a student would be trust your instincts and your intuition about your learning. If you’re not learning and you feel it’s because someone explained it a certain way, remember they’re human. Your teacher, your instructor, your tutor is probably doing their best. So, remembering that your instructors are humans who give them the benefit that they’re trying. But, also trusting your instincts if they’re not and getting your help where you need to and advocating for yourself. I think that is, really important and, along with that, I think this overlaps with something Heiko said, but setbacks don’t mean that you can’t do it. You can do it.

Amanda: my advice, again, this is purely from the student perspective, not the instructor perspective. But, I would say everyone’s learning style is different. learn what your learning style is and own it. There is nothing wrong with you or your brain. So, if you have to, basically, translate what your professor says or convert it into a form that your brain understands and processes, then do it. It’s definitely going to take practice, especially math. Like to me, you have to practice math. You can’t just memorize things, or maybe you can and congratulations if you can. But, it is going to take work regardless of what subject or area of focus you’re pursuing. Because, practice makes perfect. The nature of STEM is even though it’s of elitism and perfectionism the reality is it’s not. It’s the opposite. We’re constantly learning and, as professor Josephine said, failure is an integral part of STEM and that’s how we progress. So, don’t feel bad if you don’t get an A, or B, or even a C In the class. It’s just about learning how your brain works and being more prepared for next time. So, don’t give up. Be prepared to work hard, own your learning style, and just be proud of it.

Conclusion and Final Thoughts

Amanda: So, thank you professors Josephine and Heiko for joining me today.

Josephine: Yes, I had a great time and appreciate the chance to speak and to listen to Heiko’s ideas as well as yours, Amanda. Thanks.

Heiko: Yeah. Thanks, Amanda, for bringing us together. And, Josephine also. Great to hear both of you and have a discussion about these very important things. Thank you.

Amanda: Thank you for listening to today’s Let’s Talk Autism episode. I hope that STEM was demystified to some degree. As Heiko and Josephine mentioned, any student is capable of learning STEM and that these subjects are naturally integrated into their daily lives. Thank you for listening and be sure to tune in for the next episode.

Michelle: Thank you for listening to Let’s Talk, ����ֱ��’s broadcast about disability culture. Find more information and resources concerning this episode and others at . This episode was produced by the Let’s Talk Podcast Collective as a collaborative effort between students, the Accessible Education and Disability Resources Department, and the PCC Multimedia Department. We air new episodes on our home website, our channel, X Ray 91. 1 FM and 107. 1 FM, and KBOO Radio 90. 7 FM.

Episode Transcript

Edited by: Hannah “Asher” Sham

Introduction to Let’s Talk! Autism

Michelle: You’re listening to Let’s Talk!. Let’s Talk! Is a digital space for students ����ֱ�� experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the opinions or positions of , PCC Foundation, or our community partners. We broadcast on our home website, , on and on X Ray 91.1 FM, and 107.1 FM, and KABU Community Radio 90.7 FM.

Amanda: Welcome to today’s Let’s Talk! Autism podcast episode. I’m your host and producer Amanda, and we will be discussing the recent cultural shift around Math 111. Professor Heiko Spoddeck, co chair of the Math Department of Sylvania Campus, joined me today for the discussion. We discussed the thought process behind the shift, what motivated it, along with how math has been traditionally used as a barrier in STEM and higher education as a whole. We additionally discussed how rebranding it may change people’s perception of the course. While listening to this podcast will not automatically solve any math difficulties the audience may have, it may reassure everyone to know that educators want students to succeed in these courses.

Host & Guest Introduction

Amanda: Thank you very much, Professor Heiko Spoddeck for joining me today on Let’s Talk! Autism. I am really looking forward to this conversation. Because, Math 111 has been the bane of many students existence for many, many years. Including when I was in my early 20s, getting my first undergraduate. From what I understand, there has been a cultural shift around Math 111, and I’m very excited to hear your perspective on it, both as a STEM professor and just someone who has had years and years of experience with math.

Professor Heiko: Yeah, thank you. Thank you for inviting me and having me here. So yeah, look forward to discussing more of it.

Amanda: I think it’ll be a great conversation either way. And I think it’ll just be kind of informative and enriching just to see what’s going on in the secret world of math. So to start off, I’m gonna have us introduce ourselves, with names, pronouns, neurodivergence or conditions, if you’re comfortable with that, as well as our profession slash degrees. so, my name is Amanda. I am the host and producer of Let’s Talk! Autism. I use she, her pronouns. I’m finishing up an animal science degree at Oregon State, and I’m applying to vet school this year. I’m also excited to be a research undergraduate with a dog training camp this summer and I’m autistic.

Background and Teaching Journey of Professor Heiko Spoddeck

Professor Heiko: I’m Heiko Spoddeck. I use he, him, his pronouns. I do teach math. I have done math most of my life. But, I actually have a master’s degree in physics. I also have a graduate counseling degree. I do identify as “neurodiverse”, I like the term. Because, I don’t fit any category of any kind. And the main thing that I think I had to learn to live in the world with is that I’m a completely visual thinker and I had to learn to navigate that in the world of talking.

Amanda: Yeah, and before we begin, I just want to say, like, the great Temple Grandin, who is, to me, one of the most prolific autistic advocates and speakers of our time. She is also a visual thinker, very much like you, so I just want you to know you’re among the greats when you say you’re a visual thinker, and to never be ashamed of that.

Professor Heiko: Thank you. I had to learn to figure that out because I always thought I’m stupid because I wasn’t doing what other people were doing. But somehow I got good answers.

Amanda: it’s actually interesting you mention that. Because, I am the opposite of you, I am not a visual thinker at all. When people say, visualize a field of grass or something, or like an ocean side, or, I don’t know, whatever they tell you to visualize. I can’t. I just describe what I know the thing they want me to describe is, and I just nod my head and go along with it. Because, I always felt weird that I couldn’t do that. like, With physics, physics was a real struggle for me in this particular case, especially with graphs and diagrams, which you’re very familiar with, obviously. I’m not saying that’s anyone’s fault, but that contributes to why I hated physics so much. Because, the formulas themselves weren’t that bad. In fact, physics too, I thought was very intuitive because it had a lot to do with fluid volume and capacity of pipes and stuff like that. And that made total sense to me. Your diagrams were just, you go in one direction, then it reflects or refracts off of another angle, and it’s like, I could not keep that straight in my head. So, it’s just interesting how you say you felt stupid in the past. Because, I felt stupid for not being able to do what you did.

Professor Heiko: I actually studied physics. Because, I didn’t have to read much but look at pretty pictures and read the caption.

Amanda: No, that makes total sense to me. So, you talked a little bit about this in your introduction, but what is your background in mathematics, and how long have you been teaching this subject? you mentioned you got your degree in physics, so how did you end up teaching math, and how long have you been teaching it?

Experiences with Math and Physics

Professor Heiko: So I did math throughout my childhood. I grew up in a Society, I had to talk one way at home. Politically, at school another way. And that isn’t my thing. I like to say what I think. So, I struggled with that and math two plus two is four. And if you write five, you don’t get a point. If you write three, you don’t get a point. And if you write four, you get a point. something about that appeal to me. I also had a father who’s also physicist. Although, I always like to point out I studied physics despite him being a physicist. Because, we are very different styles of thinkers. But, whenever I had a question, he sat down and he did his best to help me and answer my questions. So, that’s a big part why I think people struggle in math, that they don’t have somebody to go to and have their questions answered. No matter what gender they are, no matter what race they are, no matter how they think, how they act. That they could just have somebody answer their questions. We would have a lot more people being okay with math, just like they’re okay with reading and writing. And so then I just did a lot of math throughout, went to a special high school for math and physics and chemistry. Did extracurricular stuff and went to university already as a child, in middle school and high school, had lots of opportunities to do extra courses at university. But, then learned through all that, that applied part, like in physics. That math was really I love to do. But, just the math where you had to Cross all your t’s and dot all your i’s. I make too many mistakes for that and that didn’t really interest me. So, I studied physics and I loved astrophysics, that seemed a good match and i’m really happy. I had a good time there. then I tutored during school a lot. Was asked to help other kids. Then learned that, “oh, my god! You can get money for that!”. So, I made money with that. Also throughout my studies, I came here to the U. S., I’m originally from East Germany. Kept tutoring people and then was was hired here ����ֱ�� as a tutor 21 years ago. Became, then, the tutoring center coordinator and math teacher eighteen and a half years ago. I’ve been here ever since. And now just teaching math.

Amanda: If you don’t mind me asking as a follow up, Why did you not teach physics instead of math, or have you ever considered teaching physics? I was just kind of curious. Because, you have a strong background and are very comfortable in both subjects.

Professor Heiko: I was actually hired as a tutor for math, physics, and chemistry, specifically, in this student learning center. like my predecessor there, really was trying to get more science tutoring off the ground. And, so he was looking for people who could not just tutor math, but also physics and chemistry. So, that’s how I got in. But, then he left and that position opened up and it was the math center coordinator position. So, half of it was the coordination and the other half was teaching math, especially to students who need more support and stuff, which exactly had I done a lot as a tutor. I tutored so much in my life at that point already that, that was a good fit. And, so that happened to be a math teaching position. So, that’s how I ended up teaching math ����ֱ��. But, because I’ve done math, and I always was also in physics more interested, with some exceptions. But, for the most part, math has been my thing, so also really good fit and I love doing math and teaching math. Yeah, I’m very happy that.

The Importance of Support in Math Education

Amanda: I did want to reply to some of what you said about students not having a lot of help with math and why they struggled with that traditionally. I definitely did experience that at the university level where there just was too many students. Like we’re talking about a class size of like 3 to 500 kids. So, that to me was a major issue. And to me, that was not the university’s fault specifically. But, the reality is the class size was too big, there was only one professor, and there’s only so many spots in the tutoring center, and the tutoring center just does not have time to help every student. Especially if those students don’t have accommodations, and it was just a bad combination and I don’t think PCC is like that as much, especially with the tutoring center, because we naturally have smaller sizes. But, I just really like that comment because I do think that’s a big part of why a lot of students do fail. They get overwhelmed and I just don’t feel like they have the support.

Professor Heiko: I do think it’s maybe not the fault of the university, but the fault of the educational system. Which is set up to be mass producing education, which has opened the gates for a lot of more people on one hand, but then also leaves people who just need more or can’t go home and have a parent who answers their questions. So, it’s been a very unequal opportunity in that regard.

Amanda: in doing the research for this talk, I actually talked to several, university math professors. They didn’t participate in this interview, obviously. But, They said that there was a big cultural shift around math 111 specifically because it’s like what you said; you had two sides of math where it’s like even people who were really good at it they tended to be good at one equations that tend to be like really practical like physics. But, you also have it on the other side like engineering where you have to be as accurate as possible and you do have to dot your i’s and t’s because engineering is all about precision. To me that’s just unavoidable unfortunately with calculus and engineering. So, it’s just interesting you say that, and I definitely agree with your comments. That kind of goes into my next question, actually.

Rebranding Math 111 and Its Implications

For years, Math 111 has been the most failed class in at least one university, in the Pacific Northwest, with at least one study suggesting it was one of the most frequent courses students struggle with and had to repeat. This, again, was true in my 20s when I first attended university. But, some sources say this hasn’t changed in over 10 years. Why do you think this is?

Professor Heiko: It’s interesting. I looked at a couple past rates, that we have now access to ����ֱ��, and actually, for us, it’s 95. At least for the couple of years. I looked at a few terms and math 111 has a passing rate. the fall 2023 is what I wrote down. But, I kind of compared it. Everything’s kind of plus minus 5%. So, there was a 60 percent for 111, and 49 percent for 95. But, yeah, it’s still you could say somewhere there is a bottleneck where people really, really struggle. One of the things was, 111 and 95. Students come nowadays straight from high school. like If you have taken certain classes, you can just take 111, then if it was within the last few years, then a lot of students self select and they’re going, “this is a bit straight into 111. I haven’t taken stuff yet.”. So, then they go into 95. So, that would maybe explain a little bit of that. I don’t know, but one of the things that stands out with math 95 is it’s very, very dry. So, actually in the one of the later questions, I compare math 95 and 111 are completely geared to prepare you for Calculus 1. But, it’s like preparing you to play a basketball game by, in 95 practicing dribbling only and in, 111 passing the ball and free throws. so, if you just do that, it’s annoying. You never play a game, you don’t know why you’re doing it. It’s just like over and over the same thing. I was also thinking a little bit of the movie Karate Kid, right? Like going this way, and going this way, and painting the fence. this way and that way. And that’s all you do. and It’s hard to see the bigger picture. Once you come to calculus, you start seeing, “Oh, wow, this is where you’re using this as what you need functions for.”. “This is where you need the algebra in order to, do those cool things that are so directly applicable to the sciences and engineering, especially physics.”. They straighten them in engineering applications from there. So, that is definitely one thought I have, and there’s a lot of details. You have to remember this and you have to remember that. And again, from like a long time ago. I’ve taught 256, that’s differential equations, kind of one of the last classes you can take math ����ֱ��, and people still struggle with adding and subtracting fractions. Not everybody, but you still have people. there are certain themes that come back over and over. And there are other themes people go like, “oh, yeah! No problem!”. But, it’s usually the algebra. That calculating and remembering this detail and that detail and how to do this and how to do that and why do I have to do that. With that, though, because you’re then going into the cultural shift. So, one of the things we’re really hoping to change, and there’s actually new developments happening right now and I don’t know yet how that all will shake out and when it will happen. But, we’ve already like really done our best to funnel people in the right math class and so 111 should really only be taken by students going into STEM, or then some extra other degrees they also need it for whatever reasons. But, only very specific. There has been a tendency still to say to people, “oh, just take 111. It keeps your options open!”. But, most students, if you ask them, ” are you interested in engineering or science?”, They’re like, “no.”, Or they’re like “yes”. It’s very clear that general question is most students either answer “yes” or “no”, done. So, anybody who answers clearly “no”. Not like, “probably not.”, but really clearly, “absolutely not”, should not take 111. I’m actually also excited to see that, will probably hopefully go through with support that students get a chance to actually don’t even have to take 95 for taking 243 statistics. but, even now they could take 98 instead of 95. It’s much more applied. So, we’ve really created new classes in the 58 / 98 to kind of help funnel people who only need one or five. Like one college class math, that’s it, or who needs statistics or interested in statistics because our world is so data driven. So, those are like developments that we’ve already tried to just free the people who actually need it, can make a huge difference. Because, then it’s not like, “why do I have to take that?”. It’s like, “you need this.”. If you want to be a physicist, you need that. if you don’t know it yet, let’s practice.

Amanda: I actually had several thoughts to what you said. So, this goes into the next question, but one thing I noticed you say about Math 95 versus Math 111 is; Math 111, basically, at least from the catalogs I’ve looked at recently, they don’t even mention college algebra in the catalog at all now. in course description, that definitely wasn’t the case 10 years ago. So, do you think Math 95 is becoming a higher failed class than Math 111 because of the same issue Math 111 had in terms of the college algebra? Or, do you think it’s the material? Do you think it’s the pressure students feel? Do you think they’re just not prepared for the course like you said earlier? to me it’s just very interesting that it’s college algebra that students just universally seem to struggle with, even if they’re really good at math.

Professor Heiko: Well, 95 is actually called intermediate algebra. So, there’s introductory algebra, 60, 65, and the math 95 intermediate algebra, and then a 111 college algebra slash pre calculus. I think for the most part, these are just two different words for the same class. I looked at the CCOG’s, so those are the course content and outcome guides which list everything, and They haven’t changed that dramatically In the last 10 years. So, in 2014, it was still called college algebra. Then we switched sometime after that to pre calculus. And, I think it reflects rather the notion that we want to clearly communicate that this is a class that’s preparing people for calculus. Not the general college algebra for the general population. This is not for the general population it’s for people who are interested in science and engineering, so any STEM field. But, really only the samples that need calculus. So, anybody needs calculus needs 111. Also needs 95 if they need to brush up on stuff. So, everybody else is much better served with, statistics or math for life. ” Math in society”, I think, Math 105, if you only need one class. Or, you could take 105 and statistics. Both are fine to take if you need two math classes.

The Role of Statistics in Modern Education

Amanda: So, when I took math 243, I did manage to test out of math 111 at the time, and math 243 was like what you said, where you have to be really precise. Because, they have you do all the calculations by hand, and these are really long calculations. And, the reason I bring this up is because a lot of four year universities require you to have that background anyway to even enter stats, even if stats doesn’t even use calculus. So, it’s like with that in mind, do you think it’s still a good idea for students to consider math 95 or math 111? Even if they may not want to pursue science, but they may enter a university that might want to have them anyways?

Professor Heiko: that is then a question to the transfer people, right? So, if The transfer university requires math 111, then they will need to take math 111. but, the one other thing with 243. For instance, you mentioned, you have to do all the calculations by hand. That, I think, is a big shift. I don’t think people sit there anymore and they use “GeoDebra”, “Desmos”, “R” is popular…

Amanda: I was forced to use Excel for that. That class actually helped me get this undergrad research position. Because, no other candidate knew how to use Excel. I found that super interesting.

Professor Heiko: that’s why we have made the 58 / 98 classes, for instance, is one big part is that students learn to use Excel in those classes, and effectively these equation. This is why we need that stuff! Like, equations, we need it to know how to put something into excel and have the idea, or this cell times this cell equals this cell. So, that whole “using a excel spreadsheet effectively” can be super helpful and so we teach them 58 / 98, so they are ready for statistics. When I started, you actually said sometimes you use the calculator, but you still did a lot of equation manipulation, that is no longer there. At least as PCC, we no longer teach it that way. So, that opens up a lot more time to actually discuss the data. discuss what they actually mean, interpret them, but then also doesn’t need the requirements by actually sitting there and doing cultural work.

Amanda: Yeah. and I know we’re kind of spending a lot of time on this question, but another thing I would say is other struggle I just thought of with math, at least for me, was the fact that a lot of it was just abstract concept and it was just kind of garbage in my brain, if that makes sense, where the way my autism works in math, it’s like, I have to learn math one specific way, like I have to do one equation one specific way in a specific order. Many times, I call it the, “lather, rinse, repeat cycle”, I have to break it down and do a one process with it in the same steps, probably for half an hour before I get comfortable with it before I move on. It takes a long time, but I do learn in that way. But, that was a huge struggle I had with algebra specifically, and up to a certain point, Math 111. Math 112, interestingly, I actually didn’t struggle as much. In fact, it was kind of a cakewalk after I mastered the unit circle, believe it or not. It’s really funny, because now I understand why people say, you should have calculus when you take physics, because it actually is genuinely easier than algebra. Because, I actually didn’t take general physics with algebra and not calculus, because I didn’t have the classes at the time. So, I hear what you’re saying, where calculus really is only applicable to specific fields. Whereas before it felt like “P- Lord” is telling students to take Math 111. Because, it was just like a “end all be all” requirement, if that makes sense? To no matter what course you were going into.

Professor Heiko: Right. I mean, it’s now become more pre college class, but there’s also a part where you’re like, logarithms. Like once I sent my students out and now with Google and all that. Like, go find out or talk to somebody from your field and find out where they use logarithms. And they’re like, “wow, that really weird concept!”. It’s like earthquakes. You know, we live in a earthquake zone. like you need it for other things like chemistry and, all sorts of things. Like once you start understanding how functions show up in life, you’re like, “yeah, they’re everywhere!”. So, students come up with all these examples of functions and people. However, the calculations are still just calculations that people need to do, but they get a little bit more, ” seeing the meaning” than in 95. I think, that is a little bit more dry in 95 and I’m a big fan of bringing in applications since it’s hard

Amanda: Yeah, and I just don’t know how to avoid that, but I definitely do agree with you. I think that’s in particular where I struggled with earlier math classes, because it really is just abstract concepts where it just doesn’t mean anything by itself. So, on question four, I think I talked about, we already talked about this a little bit, but Math 111 has recently undergone a name change from College Algebra to PreCalculus 1, with Oregon State now calling it Math 11Z, or Math 111Z.

Professor Heiko: All of Oregon.

Amanda: Yeah.

Professor Heiko: So, that was the Oregon CC. And I don’t know what the acronym stand for. I apologize, but, it’s not CNN, but CCN. So, colleges from around the state, at least the representatives. So, there were representatives from the colleges and universities, that sat down and said, “we all agree to at least teach this in these classes, name them, have this many credits. But, then also accept each other’s classes.”. So, if you take 111Z ����ֱ��, it will be accepted at every other, Oregon school, of higher learning. And so that is really exciting. That part of it. And so, yes. They decided on pre calculus. Because of what we just talked about and making very clear this is preparation for calculus. And other areas are better served with 105 and 243.

Amanda: So, we may have talked about this already, but why was the decision made to change the name? was there a cultural shift? Were there complaints? Like, what exactly caused officials to officially change the name of Math 111?

Professor Heiko: So, I mean, ����ֱ��, we had done that already. So, we changed. I didn’t look exactly at the time that it actually changed. But, I know in 2014 we still had college algebra, and then a couple years later we changed to pre calculus because, this is a class meant to prepare you for calculus. It is not the, “oh, I just take the college algebra!”. If you just need a college level math class, take 105. or statistics, or both. But, taking 111 should only be taken for that. Or, if some degrees needed for other reasons, that’s fine too. But, most degrees don’t need it. If you become a psychologist, you don’t need one. You need statistics. So, rather take statistics and put all your interest and knowledge into that and learn.

Amanda: Yeah, so I’m just wondering what caused the change though. Like what made teachers think, “okay, let’s only make students take math 111 if they are going into calculus. Like engineering, or like another stem course.”, versus making it a general requirement across the board like I mentioned earlier. What happened to make that change. Do you know?

Professor Heiko: Well, the funny thing is we actually used to have 111 A, B, and C. And so we used to have 111 C , the one that was the calculus route. And then, 111A is kind of the 105 now. And then, 111B more for business people. So there was always a recognition of, “Certain people don’t really need this. They need something else.”. They need a college level math class and there’s lots of things they should know and learn. But, what we’re really looking for is not being served by taking this class. like in 105, they can talk about voting and, gerrymandering, and how that actually, looking at the percentages and looking at finances. So, you might use the same things. Like you might use exponential functions and all that. But, really in a very strong contextual way. Which a lot of people do much better, when it’s like, “oh, this is what I’m calculating instead of some abstract X.”. Right? Like, “what’s X?”. so, in calculus, you still have a lot of “X”, and you need to, learn how to make sense of something very abstract at first sight. This is how life kind of goes. There’s like this and then this comes. Like, you know, you also try something. I think there was, at some point, the feeling of like, people were mostly taking 111c anyway. So, we created 111. And then that somehow didn’t quite serve the students who didn’t need calculus. So, then we’re like, let’s actually make separate classes. I mean, statistics already existed. We don’t really need 111. Instead, we taught a little bit of functions in 95 for teaching. So, that students have enough understanding of it and statistics. and the rest, they don’t need in the same degree. What would we want if students only take one college level? Math, what would we want them to know and be able to do? Like, determining whether a function is increasing or decreasing? it’s very useful and important for calculus. Extremely important. It’s all what calculus is about. Not for a student who’s, becoming an art major. Also I think the change you’re referring to is like what I’ve seen over the 20 years 15 years, definitely more and more focus on really what is best for students. and so you try something, you think this is better than, you revise it from there. from what i’m seeing We still hope that it’s still getting people in the right classes while we’re still working on that. That, that gets better. But, also we are started by making all these classes available, so that students have a place to go that is best for them.

Amanda: So, we were kind of talking about this.

Inclusivity and Accessibility in Math Education

The cultural shift we were talking about, was it to make math more inclusive and accessible? Basically, by making Math 111 more specified to calculus, and making a lower math class than Math 111, like the standard college math course, is that like an effort to be more inclusive? And do you think this new strategy is going to help?

Professor Heiko: What students in calculus struggle most with is 95. like the whole series 20, 60- maybe not 20. But, definitely 60, 65, 95, And some parts of 20 as well, are all geared towards calculus. So, they give you everything that you need in calculus. so, that’s what we’ve been trying to get people into if they need calculus. And so then we created 58 & 98. 58 is also accepted now for, any associate degree as a math requirement course. Which is awesome because it’s very, very applied, in its approach to mathematics. So, the cultural shift, that I’ve seen is very, very for students. And it’s not that prior there were not people also who were absolutely interested in student success. But, in my experience, there’s more people now. Pretty much most people who are actually at this point teaching ����ֱ��, I would say, doing what they believe is best for the student. So, the focus on the student, we may disagree with what is best for a student. But, we are looking for what is best for the student. So, yes, I do think that rebranding Math 111 as pre calculus hopefully helps to make clear this is for calculus. This is not the general. You know, “hey, just take a college class is 105.” . And if you need statistics or just are interested in statistics, you can do statistics. Or if you need two college level math classes, you can take 105 and statistics.

Amanda: Another thing I would say about statistics is, you might disagree with me a little bit on this, but I actually think statistics is the most valuable math class anyone can ever take. I don’t care what field you’re going into. And the reason why it’s not about the equations, it’s about the fact that you’re learning to interpret data. like, I learned that statistics 2, to me statistics 1 didn’t really teach that very well. Because it was more about the calculations themselves and stats too, we just flat out used geogebra. And it was more important to the professor that we understood what the numbers meant. I really appreciated that because he actually required us to write out the answer in a sentence, if that makes sense? Like we would calculate the answer, or put it in Geogebra, or whatever system we were using, and then he would have us write a couple sentences about what the answer was, what it meant on the bell curve, and just what that means. Like, is it below the average? Is it above the average? does it meet these requirements to be statistically significant? I really appreciated that. Like, I understand how to read studies a lot better because of that class. So, with that in mind, even if students aren’t really gonna go into engineering, or any other kind of math field, or anything like that, do you still feel it’s valuable for students to take it?

Professor Heiko: To take statistics, yes. Absolutely. yeah, no question. and most people, I mean, there’s a lot of degrees that do ask for statistics, and non STEM fields, like many, many non STEM fields, like the social sciences, like they all, need statistics and constantly talk and make statistics. So, yeah. People who don’t need it. I don’t know if they actually get statistics in 105, but they get a very round also, you know, as a person living in this world. This is math that is really helpful to know and you should know. then if they are rather interested in statistics and how this whole data thing works, then they could take that and highly encouraged that. Maybe they’re like, “Oh, just a roundabout, nice.”. Learning one of five is a big class and people are very passionate about teaching a very student focused. Also highly recommend that.

Amanda: So, Math 111 has traditionally been used as a weeding out course. which to me likely contributed to its high failure rate in the past. why was this attitude supported for so many years, and how would you describe the process of weeding out students using this class?

The History of Nursing and Math Requirements

Professor Heiko: I mean, that’s, it’s interesting that question of, why was it supported the questions and also who supported it. Right. so the way it works as each field. Decides what math requirement they want. So that’s not math. So we offer classes. I mean, there’s some, of course, back and forth and also in like 58, 98, so there is collaboration and there’s also like, “okay, these are the classes we have.”. And then the degrees decide that this other math classes, we need our students to know. it’s correct. So, here’s the thing, right? The situation is if you just opened it up, there would be lots and lots of applicants. I wrote down for myself the history of nursing, for instance. So, when I started, the nursing had actually math 20 as a math requirement. So, that means that number of applicants were much more. so, then they had the lottery system of who would get in and then they had people then who did not succeed in nursing. Because, it’s hard in nursing. I don’t know how that historically came. But, at some point, somebody must have said, “well, if they do well in the math classes of a certain level, then they will also succeed with us.”. In order to just have fewer applicants, but then also those who apply have more of a guarantee that they’re actually will be sticking through and succeeding. I cannot speak to whether that works for them.

Challenges Faced by Nursing Students

However, my concern is, first of all, that gives math a bad reputation. So, that’s one of why math is not liked. Because, then it looks like us math people are “the people”, when it’s, we need this class to prepare people for calculus. So then other people put people in there that don’t need calculus. They just need a math class. It’s hard because the class is not designed for nursing students. But, what really is also very sad is I’m sure there are many applicants that would be totally fine going through a nursing degree, That will not be fine going through a math class. We were talking in the beginning about, people not getting their questions answered. If you’re a woman and you have a question, you’ll very likely be told, “hey, you don’t need to ever know this.”. If you’re a person of color, And you have a question, the teacher already looks at you as thinking like, ” oh, you’re not capable of understanding this.”. So then they’re like, whatever that might not actually answer your question. So this field is so stacked. but, these students who are totally capable of going through a hard program. But, already the field and math has been stacked so, so against them from childhood that it’s really hard. To then say, “Oh, it’s not an equitable way to distinguish between people who can make it through the program or not.”. Now, that said, then it still leaves the question. How do you make that determination? Because, there’s so many people wanting it. And so you want to choose the people who are likely to succeed. So, that you maximize the resources that you’re giving to students. And what is an equitable, way to do that? I don’t know. I don’t have the answer for that. But, math is not an equitable tool from my point of view. The way things are at this point.

Amanda: I would agree with that.

Personal Experiences with Math in Education

And this question is a little personal for me in terms of my own experience and how math was used against me to weed me out. I wasn’t diagnosed with my autism until I was 31. So, when I was first in undergrad, I didn’t have paperwork, I didn’t have any accommodations, I couldn’t get any academic support. No one really knew how to work with me, and I didn’t know how my brain worked. And the reason why that’s relevant, is because I want to be a veterinarian so badly. I know this for a fact about vet medicine, unless if I’m going into medical engineering, I’m not going to need calculus. But, it was still required by basically every graduate school I wanted to get into. and it really was just for the sake of weeding out, it really wasn’t for any other practical reason. That is specifically a weeding out class, it just is. I think that’s very unfortunate, because I don’t think math itself has to be evil, like you said, or it doesn’t have to be something painful. To me I kind of have a love hate relationship with math, at this point. Because, I actually did enjoy 112 at the end of it, when I mastered the unit circle, because I’m a pattern thinker. So, when you have the unit circle memorized, you just have to remember the patterns of the unit circle. And if you memorize specific things about the unit circle; like, if you have anything over a fraction of four. You know that the xy coordinates are the square root of two over two, and the square root of two over two. And whether they’re positive or negative, it’s gonna depend on what hemisphere they’re in. But, if I were to answer any questions about the unit circle in January, even of this year. I would be able to tell you what it is, but I wouldn’t be able to tell you that. So, it’s just a shame that students, they’re just really, scared of math basically. They’re just scared that they’re not good enough and, at least this was my experience, they just put all this pressure on themselves. They just don’t feel like they can even ask their professor. And for me, I didn’t ask for help. It wasn’t because I was a woman. Or at least I never got that impression about why I wasn’t helped, it was just, professors did not know how to help me. I didn’t know I was autistic, and my brain just doesn’t work the same as theirs. And, quite frankly, even if I wasn’t autistic, no one’s brain works the same anyways. You shouldn’t assume that a student will understand how to solve a problem the same way you do anyways. I don’t know what your experience was growing up, especially in East Germany.

The Impact of Neurodivergence on Learning

But, when you approach math problems, did you remember kind of having a similar experience where teachers didn’t know how to work with you, or were you just naturally really good at math that they didn’t have to help you? If I may ask?

Professor Heiko: I was in the very fortunate situation that I was always good from the beginning. So, then if you’re good and you have a question, they answered you. And then if the teacher didn’t make sense, I then asked my father, and If he didn’t make sense, I would also get frustrated. But, he was more stubborn. Than he would, try again, and I would get annoyed. Because, It wasn’t quite the right way for me, but in the end, I did end up with enough understanding then to keep going. I remember coming home in fifth grade, like, I hate fractions and my father was like, “come here.”. So, in the kitchen, takes an apple, cuts the apple. One apple, two halves, two halves, like one apple. Well, then cut half one half into two quarters. Two quarters, make a half. Right? And like, well, that’s not difficult at all! So, I had that luxury. But, I think, if I had not gotten right answers, I would have had a much harder time. But, I was fortunate. Also in reading, writing, always just got it, a lot of it, quickly. So, then if I ask questions in class, I would get answers. Because, they were always considered. If I had questions, then of course, everybody else had questions.

Amanda: So, another thing that I encountered with math, including ����ֱ�� is, I’ve had great professors ����ֱ�� with math. But, there are some comments where it does make students, especially me, reluctant to ask for help. I have to repeat Math 111, because one thing I just kind of forgot how to do in algebra was how to get rid of square roots in an algebra equation. I remember how to do that now, but I just hadn’t done that in a while in Math 112, and when I asked the professor how to do that, he was like, “Yeah, you should have learned how to do that in Math 111.”. And I’m like, “uh, that’s not helpful and I don’t remember everything from Math 111.”. Especially, because you don’t have to do that a lot with square roots. There’s not a lot of situations where you have to get rid of square roots in an algebra problem.

Professor Heiko: two, three problems. That’s it at the most in math 111.

Amanda: I did appreciate his candor about the trig identities, and he just was very honest about how useless he thought they were. oh my god. I’m not gonna lie, I think trig identities, at least most of them, should be eliminated. Unless if you’re going into calculus itself. But, that’s another discussion.

Professor Heiko: Something like that. I like, because it’s like a puzzle. I love trig actually. Cause it’s visual. But, in terms of, usability, it’s…

Amanda: just comments like that to me are really unhelpful especially. And it just makes students like kind of more reluctant. He was a nice person, but I don’t think he realized just how damaging and discouraging that is for students. Because, they’re not going to want to ask you for help if you’re going to question whether or not they deserve to be in this class.

Professor Heiko: right. Yeah, no. I’ve also heard somebody had A’s all throughout and then was told, “oh, you don’t belong in this high level math class.” like, how can you say that to somebody like who has like A’s all throughout math. it’s horrific.

Amanda: In physics too, I remember we had this substitute for one class and I was in office hours with a couple of other students. I forget what concept or chapter this was, but she was kind of starting at a point in the equation where I wasn’t used to it, so I had to ask her, “Hey, can you stop and just start from here? I can’t solve the equation the way you’re doing it.”. And she told me, ” Algebra is a requirement for this course, you should know how to do this.”. I actually talked with her afterwards and said that was very rude, and I’m autistic, and you shouldn’t have said that to me. Especially, in front of other students. Looking back on it, I feel like I should have reported her. But, I did feel bad for her because she didn’t have my disability paperwork. But, even if she didn’t, that’s not okay to say to a student especially on such a public setting like that.

Professor Heiko: Yeah. I mean, how you word it is important. And sometimes in class you have to say, “please see me in office hours.”. Like in office hours, I’m happy to go through every detail of a calculation. in order to get through the material in class, sometimes I just have to keep moving. After class, I stay as long as you need to happy to explain it all. But, in class, I lose the other, half of the class. That’s the other thing. you always try to keep each half interested. The ones who are like slightly bored and the people who are like, what are you doing to me?

Amanda: Yeah, and this was actually in office hours when I asked her this question. This wasn’t in class. But, I was pretty upset by that, actually. Again, I felt kind of bad for her because she was pretty stressed herself. But, I probably should have just reported it. I don’t even remember her name. So, that’s just unfortunate. Because, I feel like incidents like what we just described are common. Where it’s like, they think it’s harmless, but it really is harmful. So, when a student has a question, don’t say they should know this or they learned this in a earlier class. Cause, we just aren’t going to remember everything anyways.

Professor Heiko: sometimes they’re rushing. Especially part time instructor rushing to the next college to teach another class. You know it’s a rough, gig unfortunately for some people. But, that does not excuse that. It just shows also the other side is, as you say, stressed and complex as well.

Amanda: Yeah.

The Role of Math in STEM Education

Do you think the rise of autism, ADHD, and other neurodivergent diagnoses in both students and instructors have contributed to this attitude change in math? or like the cultural change in math that we discussed?

Professor Heiko: I feel like there’s been a shift more even because of the pandemic. That each situation is different. Each student learns differently and so it used to be, you do this and kind of expect people to go, along. That never happened. I mean, it’s kind of funny as a child and ask to help your peers. which means the instructor couldn’t help, couldn’t explain it. And then I’m supposed to explain it, better. it’s interesting that way too. But, the focus on that each person needs something different, and isn’t like, “oh, they’re not interested and they just don’t want to do something.”. But, no. Assuming that everybody wants to learn and we have to provide the opportunity to make that happen. So, I do think that. The other thing is, the accessible education and disability resources has very strong support, trainings, and, just more widespread and also streamlined all the, notices we get as instructors. Knowing what students need in our classroom also has been very helpful. Everybody can learn if you’re just getting the support to learn. And some people always had it. Some people have learned it. As we have done more and more group work; for some people, group work is not the right learning environment. And how can we, navigate that in so that each person has a good experience and gets the support they need.

Amanda: So, I just wanted to say that I feel like, I don’t know if the rise of neurodivergent statistics is causing a shift. But, I have talked to several professors who believe they’re neurodivergent and actually asked my opinion, should they get diagnosed? And first of all, I’m not a professional and I always make sure they know that. But, I just told them, for me, the reason I got diagnosed, especially in adulthood is it really wasn’t about accommodations. Although it definitely does help. It was about closure. It was about getting that explanation for why I was so different as a child compared to my peers, and just why I was treated so different. Why I process things so different. Why I saw the world so differently. So, the reason I bring that up is I think there is a lot of neurodivergence in STEM. And Temple Grandin actually does talk about that in her book, “The Autistic Brain”, as well. Like a lot of autistic people are in Silicon Valley. Because, it’s like that constant stream of stimulation. They always have something to do and I’m definitely like that in the veterinary field. Like my favorite shadowing experience, hands down was “emergency”. Because there’s always something going on. Always.

Professor Heiko: I mean, I think like one of the things I’ve also gravitated to that. It’s like, I’m okay in math. I’m not weird. I’m just like one of many people who are all somehow different and do this different or that different. And. I think, however, that might be part of why students then struggle. Depending on what the neurodiversity is of the instructor, they’re also more good for these students, not so for these students, might not be as flexible. Some people might be really good just this way. But, cannot for the life of them understand this way. So, I think that also comes in why maybe the teaching is not as perfect as it could be. Or, if we knew then we could match the right people with the right people.

Amanda: To me, the most difficult thing about, both, math and other STEM courses is that you’re never going to have a perfect system. You’re never going to be able to accommodate literally everyone in a class. To me, the best thing teachers and students can do is just be empathetic to each other. To me, that can take the form of group work. But, the biggest thing professors especially need to practice in classrooms is just be patient. Like, that’s the biggest thing I ask for from professors every term, regardless of what course I’m taking. I need patience, I need you to understand that I’m autistic and I need you to listen to me about my disability. Do not make any assumptions based on your own experience. Because, I have had professors compare their own autism to mine and just think, I need the same accommodations and learning style they do. Which, by the way, You probably know better than this, but I’m just gonna say it anyways, don’t ever do that. Everyone’s autism, everyone’s neurodivergence, is different. No two people are the same. Or, they have a child or a loved one who’s autistic and they assume. I had a couple of professors like that who are really well intentioned, but they did not understand that my autism was not the same as their child’s. They just kept assuming I needed the same accommodations or assignment format in class as their child, and I had to fight them. not fight them, but repeatedly tell them, “Look, I need more structure.”, or “just give me an example of what you want. This tells me nothing about what you want.”

Professor Heiko: that has definitely changed. Like that is a change with more understanding that an individual person is an individual person. Then how does it look in teaching and when we still have a big class in front of us, how can we make that work as best as we can?

Amanda: This kind of goes into one of the last questions, but I’m gonna reword this a little bit. Because, I think it’s a little more relevant to what we were talking about. how do you think that Math 111 or Math 95 should be taught to make it more accessible and less daunting to students? How can we make math less scary to students, I guess, is my question there.

Professor Heiko: There is this thing that goes, “Oh, if you just take Math 111, you keep all your options open.”. Sometimes I feel like we are closing options. Because, then people are not happy in that class and they go like, ” never again!”, Or they’re failing that class and there’s other implications. So, instead of going that, it’s more like, “Where are your interests, right now?”. And then if a person; like let’s say, takes 105, totally falls in love with math, and then takes one of them. There’s no harm done. There’s absolutely no harm done. We have a more solid foundation, realize how applicable math is in life. Now they’re ready, because now they’re like, “yay! I love math! I want to study math, or science, or engineering!”. It’s totally fine. Rather than, “oh, take this one then you keep all your options open and then don’t have to retake a math class.”. I think that is something I really hope with that rebranding. it is just for math, that’s why it’s math for life, and math for society. Take that set and really following people where they are at right now. Because, we’re not teaching their future self, we’re teaching them where they’re at right now. So, that is my real hope. And then, 111 we’ve made them half lab classes, right? so, people really like having more group work, and class together. Because, there several stages to learning. There’s the passive knowledge, where you’re like just absorbing stuff. Then you are starting to make it active knowledge, by actually being able to apply it. Then you starting to teach it, or you express it verbally and tell somebody else how to do it. Then, it’s yet another way of really understanding it. And so these are different stages. The hardest one, I heard that first from Nolting winning at math, it’s a book. He said, “if you take a government class, we ask you to describe how government works. if you take a math class, we ask you to run for governor.”. We actually ask you to apply what we teach you, not just explain what we do. So, we are more and more, through the lab, making time in the class to start that active learning process. So, then you do some more practice at home when you have some time to digest what happened in class. Or, people give videos first, so you actually have that passive knowledge experience at home. Then you come to class and you work together, you talk to each other. Already getting into that teaching experience in class. So, these are many of the ways, and some of my colleagues, also doing fantastic things.

Amanda: I like your comment on not teaching their future selves. Because, I kind of say something kind of similar in the peer core science group. I tell the students that taking the stem courses isn’t about mastering the material in this class. You don’t have to be a master. This is about building foundation. Because, here’s the thing you’re going to repeat these concepts throughout your education journey. So, don’t worry about being completely perfect in class, it’s about getting comfortable with it. To me, that kind of relates to what you’re saying, and relates to what I said about math in the unit circle. I know I’m never going to use the unit circle as a veterinarian, I know that. But, it’s about the fact that if I do need to take math 251 this summer, and I know I’m going to be in good shape, because I do have that foundational skill, because I got comfortable with it. And even if I have to revisit, that’s fine. To me, the biggest thing; I really wish that math just wasn’t weaponized as a gatekeeping class. If that wasn’t weaponized as a gatekeeping class, I think people would enjoy it a lot more. Cause I really do feel like that’s where a lot of the bad reputations come with math, at least that’s my opinion.

Professor Heiko: Yeah. And then it’s also, unless you can do this your whole career is done. That’s just rough. it’s not, necessarily that relevant. I mean, you should have the option, but again, it’s always been traditionally like, “Oh, you have all these options that you be a veterinary technician and you might need calculus or engineer.”. But, most veterinarians probably will never know that. The other thing in a traditional education is, that having “very broad” was considered good. And I do agree with that, in part and in part, not. You’re having a broad range, yes. not in a gatekeeping way. So, it’s like exciting things. Okay, math is not your thing. Then maybe you take engineering 101 instead. Because, you’re like, “Hey, what do engineers do? I’d like to know.”. just because having options to have a broad range of things that, you could do. So, some of that, I do sometimes worry that we are like narrowing the education field into, “oh, you want this. You only take these classes, and only take these classes.”. yeah. So, that’s one worry. The other worry that’s been on the back of my mind is that math is very good at is learning abstraction. That’s why it’s hard, but it’s a very abstract thing. how can we teach so that, people can zoom out and look at patterns? That’s so needed in society and voting, the way we do politics. I feel a lot of people just in it and have a hard time stepping outside and looking at it from a more abstract viewpoint. But, I don’t think math, right now, is the vehicle to quite accomplish what we would like to do. if that makes any sense.

Amanda: No, it does. But, my brain, just with my autism. That abstract part was just the hardest thing for me, and it just my brain just was like, “this is just useless junk. I don’t need this. Why do I need this?”. Because, I am a pattern thinker, and I do notice patterns kind of in society, like you were saying. But, I would never know how to connect that to math. I think it makes a lot of sense, like, in music and language. My wife, was raised a pianist by her mother and, to me, she’s also really good at math. And I don’t think that’s a coincidence. Like, I have heard that quite a bit, where if you’re good at language and you’re good at music, you’re good at math. I bet it’s based on the same abstract patterns you’re talking about, at least that’s what my guess would be. The unfortunate part about Math 251, at least in my opinion, is that, Veterinary programs really are just purely using it as a gatekeeping tool for the most part. I can’t really think of how it’s practically used, unless if you’re going into medical engineering. Because, even vet techs, any calculations that are done, they usually do them on a machine or they just do them in their head and that’s not pre calc, it’s algebra. Or it’s just counting, or it’s basic multiplication, like if you’re taking a respiration rate, or a heartbeat, for example. So, I think that’s the really sad part, because I do think math could be fun. But, it just isn’t treated that way, and I’m going to use organic chemistry, synthetic transformations, as kind of a comparison a little bit; the way organic chemistry synthetic transformations were taught traditionally, I hated that because they use the flashcards and you cannot learn them with flashcards. I’m sorry, you cannot. Or, if you can, good for you. But, that is very rare. The reason why is because You’re not going to understand what’s happening in the reaction to make it start from 1 reactant to a product. To me, that’s the same thing with algebra. Especially, at the beginning of algebra, where it starts off very simple and it adds up very easily. But, when it becomes really complicated, or the equations start getting nastier, the equations start making less and less sense to me. Because, more and more is added on to the pattern, if that makes sense?

Professor Heiko: Yeah, yeah. Totally.

Final Thoughts and Encouragement

Amanda: So, my final question is, what would you like to tell the audience about Math 111, or any audience members who are thinking of pursuing a STEM career?

Professor Heiko: Like it’s where you practice dribbling and passing the ball and free throws. it’s really just the skills. In German the, finger skills, where you don’t have to think about it. You can just see an equation go like, boop, boop, boop, boop, boop. So, that then you can focus on the big concepts. I’m learning Spanish right now. So, I’m taking a Spanish 101 class. And so they let you go in the first chapter and you learn things and I don’t have a lot of time. I come to the second chapter and you still kind of like managing on the third chapter. I’m like, “Oh, I still have to think about this. I have to think about that. I haven’t practiced it enough. I haven’t spoken enough”. To now have all chapter one and chapter two, like fluently available, so that I don’t have to think about anymore and can think about chapter three. ,So similar in math is, like 95 you can get through it and you do your thing. And then you’re like, “okay, thank goodness I’m done with that.”. And then, you go to 111; you’ll need that. But now you have a new concept to worry about. But, you need this, what you learned in 95. You come to 251 and you’re like. “Oh, there’s all this new stuff!”, which is cool and exciting and not useful. Then you’re like, “how am I supposed to like just do these math simplifications or rational expressions?”. And it’s just like a little sidekick. Oh, and then here, throw in a logarithm, just like, ” and I’m supposed to know the logarithm.”. Well, you’re not, but you’re supposed to know how to apply them. So, it’s like all these things. And so, it’s kind of like delayed gratification. We are living also in the time where it’s like, “oh, I want to see how I apply it now.”. But, if you are interested in science and math and engineering; just knowing calculus, it will be worth your effort to just like practice, practice, practice. Some of my students, they then go, “Oh, I guess I’m in this meditative zone.”. And that’s what I like was like, “Oh, I do this. I do this. And I get an answer. It makes me so happy.”. , So I celebrate the little wins. That is something I would definitely encourage you. keep in mind and kind of see, “when I can do this, I can play the big game.” I used to play violin. You have to also practice your scales over and over. So, you have the fingers move without you thinking. They don’t move fast enough if you have to think. I also want to acknowledge that there’s a lot of scientists and also especially engineers that are like, “I know I need math. But, I want to be an engineer. I don’t want to do all this math!”. All of the math that you have to do will be so much easier if you can just do 95 and 1 alone. probably for engineers, especially, also trig. Especially electrical engineers. So, there’s a lot of trigonometry as well that is very helpful. But as you said, people have an easier time with that. But, you make your life so much easier, going forward, if you can do that well, and just put in the time to practice. Just like I have to practice my conjugation for all the verbs in Spanish in order to be speaking them at some point.

Amanda: Yeah. My final thoughts to this question are similar to what you just said. I definitely encourage people if they especially want to pursue engineering; these are hard classes. If you’re struggling in them, there’s no shame in that. Always go to your professor, if you want help. Or the tutoring center, if you want help. If you’re struggling in these classes, you aren’t stupid. It’s not that you’re not good enough. These are growing pains and You just have to get comfortable with the material; you don’t need to master it. It’s basically just figure out how to make this enjoyable to yourself and just do your best. It’s not the end of the world if you aren’t the best in these classes, or if you’re not getting it right away. If you’re neurodivergent and you’ve never been particularly confident in math, but still want to pursue engineering, medicine, or any other stem field. Give math a try, kind of like, Heiko said, cause you never know, and it’s sometimes it’s about the right teacher and getting the right support and just figuring out how your brain works. Everyone’s brain is different, we all need to be proud, and we all just have to own our brains and own our learning styles. So that brings us to the end of today’s podcast. Thank you so much for joining me, Heiko. I hope to have you on for another talk.

Professor Heiko: Thank you so much for having me. Really enjoyed our conversation.

Conclusion and Podcast Wrap-Up

Amanda: Thank you for listening to today’s episode. I hope you found the conversation engaging and thought provoking around the topic. When discussing STEM, math is often viewed in disdain, having a long held reputation as a gatekeeping tool. But, colleges and universities recognizing the variety and student needs. Math may become more accessible and recognized as a skill building tool like other core requirements. As Heiko and I discussed, students do not need to become perfect in math or other foundational courses. It’s about becoming comfortable with the material and knowing that you are not alone in your struggle. With higher education recognizing that individual students have different strengths and weaknesses, math can hopefully become another skill for advancement rather than forcing students to stall out or quit their major. I hope you enjoyed today’s episode and will listen to the next one.

Asher: Thank you for listening to Let’s Talk!, ����ֱ��’s broadcast about disability culture. Find more information and resources concerning this episode and others at . This episode was produced by the “Let’s Talk! Podcast Collective”, as a collaborative effort between students, the Accessible Education and Disability Resource Department, and the PCC Multimedia Department. We air new episodes on our home website, our , X Ray 91.1 FM and 107.1 FM, and KBOO Radio 90.7 FM.