Portland Community College | Portland, Oregon

Transcript edited by Nikhil Raj Mehrotra

Autism Talk: Life Stages, Stigmas, and Self-Advocacy

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 at PCC 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 Portland Community College, PCC Foundation, or our community partners. We broadcast on our home website, pcc.edu/dca, 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 at PCC 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, Portland Community College’s broadcast about disability culture. Find more information and resources concerning this episode and others at pcc.edu/dca. 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.