Let’s Talk: Autism ft. Dr. Dora Raymaker
Student Advocates
Amanda Antell speaks with Dora Raymaker, an openly autistic educator in higher education about their experiences and perspectives. They discuss accommodations, diagnostics, cultural attitudes, and much more.
“Dora M Raymaker, Ph.D has been part of the PSU community since 2004, first to prepare for graduate applications, then as a student in the Systems Science graduate program and a research associate at the Regional Research Institute for Human Services (RRI). After receiving their Ph.D in Systems Science in 2016, Dr. Raymaker continued at the university as Research Assistant Professor at the RRI, where they conduct community-engaged research with the autistic, developmental disability, and mental health communities.” (Dora Raymaker | Portland State University)
Transcript
Intro
Amanda Antell: Welcome to today’s Let’s Talk Autism podcast episode. My name is Amanda, the host, facilitator, and producer of the series. This discussion examines the history of autism and research and why there is such a large gap between our community and academia. I was joined by Dr. Dora Raymaker, research assistant professor at Portland State University, who provided insight into how autism is treated in research and how our community is impacted by this.
Dr. Raymaker has worked in academia for years and is currently the associate editor in the academic. I was very honored to have this discussion with them, and I hope listeners gained context and understanding in this developing topic. Thank you very much for being with us today.
Dora Raymaker: My name is Dora Raymaker, and I am a research associate professor at Portland State University (select hyperlink to open Dr. Raymaker’s PSU profile web page).
I am in the School of Social Work, and I also teach disability studies and systems thinking and am connected to the system science program at Portland State. I’m also the co-director of the academic autism spectrum partnership in research and education, which is the longest running community based participatory research collaborative with the autistic community.
And I started out there on the community side as an activist from within the autistic community, which should by default tell you that I’m autistic. And I also have some specific learning disabilities and I, over time, through the capacitation principle of community based participatory research, went over to the dark side, got my PhD, and now I lead research projects mostly around health services and employment related research with the autistic developmental disabilities and neurodivergent communities.
Amanda Antell: Thank you. So, my name is Amanda Antell. So, you went into this a little bit in your introduction, but did you want to expand more on your background in disability research? What have been the trends you have noticed in researching autism in this context?
Background
Dora Raymaker: In two thousand and six, I was part of a listserv that I called it my accidental parent listserv because I got on this listserv thinking that I was joining a community of autistic people, but it was a bunch of parents of autistic children.
I stuck around because I was trying to help them to understand their children better. And one of the parents on that was Christina Nicolaidas, who is the other co-director of A.A.S.P.I.R.E . [read: AASPIRE] (select hyperlink to enter Academic Autism Spectrum Partnership in Research and Education web page) a physician, health services researcher, parent, and also fellow neurodivergent, although not autistic. And she really wanted to meet me because she liked what I was saying on LISR, but she knew that unstructured social time was not something that I was going to be excited about doing.
So, she contrived this autism journal club to read autism research papers with me so that she would get a chance to get to know me. And we read, I think, three research papers. They were terrible. All of them were really, they were incredibly stigmatizing. They were harmful, damaging. The research study design was bad.
If you knew something about autism, you would know that people were not constructing studies to understand the thing that they were trying to understand. They were measuring something else like someone’s communication ability or ability to follow instructions or to task switch.
So, we very quickly decided that we didn’t want to just complain about what was going on here, but we decided to do something about it. Christina was already doing community-based participatory research with the African American and Latina communities around domestic violence and depression care and was like, wow, all the complaints that communities of color have about research, excluding them and being stigmatizing and all this stuff, you can just substitute out the word autism and it applies to the autistic community. So that’s how AASPIRE started, but it also gives you an idea of what the state of autism research was at the time, which was a bunch of non-disabled people deciding what was important to research, deciding how to research it and deciding how to disseminate their findings and in what way.
So, none of this was coming from the community, whereas we on the other side had a whole bunch of concerns like: we’re not getting adequate services, and our quality of life is terrible, we are getting suicidal, and we want research about these things, but everybody is ignoring that. One other anecdote to frame what the situation was like at that time, when AASPIRE first started applying for grants. From the start we’re community based participatory research. We’re a collaboration between the autistic community and academic researchers.
And we got a lot of our initial grants rejected because the grant reviewers did not believe it was possible for autistic people to participate in research, either as co researchers or as research participants. So, they didn’t think we could actually pull off any of our studies because they felt that, in the words of one reviewer, autistic people lacked sufficient capacity for self-reflection.
So those were autism researchers at that time in two thousand and six. You never get an answer from me without a story, but that’s the kind of the story of where we started from when I entered into autism research.
Amanda Antell: I like the fact that you have stories for each of these answers, because I think people need to hear the stories, especially in the autistic community, because if we better understand our position, we can speak up for ourselves more.
We can better defend ourselves. In positions of academia. One thing I noticed in my own research with autism and feel free to not comment on this if you don’t want to, but the issue I’ve noticed with a lot of autism studies is the fact that there was no follow up.
A lot of these studies were done on very young children, a lot of them centered on boys. Really, young boys, I want to say early elementary school, maybe even younger, because I think the average diagnostic age, according to the American Psychological Association, is three, which I think is ridiculous, because it’s not like we age out of our symptoms, we can’t., I think it’s actually better if you waited until autistic people are older, when we have met all of the developmental milestones, or whether we haven’t. There are no follow up studies to see just how living with autism affects them even older in high school or college.
So that was really fascinating the fact that there’s like currently no research out there, at least to my knowledge, on not only how autistic adults function in university, and or also if they would perform better if their accommodations were met.
So, what you said doesn’t surprise me because that’s to me very typical of someone who’s neurotypical kind of thinking they know best for the neurodivergent community. And I think that’s a major problem.
Dora Raymaker: So, I think that everything that you say may have been true at one time. Luckily, it’s not necessarily the case anymore. So, autism research, first of all, is big. When you’re not inside of the research community it might seem like there’s autism research is just a little path, but autism research really spans everything from basic research on like cells and body chemistry and animal models all the way through to large scale system services, how is vocational rehabilitation doing with this population.
So, it’s a very large, multidisciplinary field. So, you’re talking about research and then you’re talking about a population. So, it could be any kind of research that’s done with the population of autistic people. The one thing that is very exciting to me and gives me a lot of hope, I’ve talked about where we started from in autism research, but that is absolutely not where we are today.
We’ve actually made enormous advances in all of these things. AASPIRE started pushing the envelope and saying, we need to start paying attention to what the community wants. We need to start paying attention to autistic adults. At that time, ASAN, the Autistic Self Advocacy Network, was also starting, they started in two thousand and six, and started advocating for things like Autistic Representation on the IACC, that’s the Interagency Autism Coordinating Commission, which is the federal body that sets priorities within the federal government for funding around autism research and a lot of other efforts we were able to increase representation of autistic people on that board, which changed some of the flavor of the federal priorities.
We haven’t had rude comments on our federal grants in many years now. All of these things have shifted. I’m the editor of an academic journal. I’m not like the editor. Christina is the executive editor, but I am an editor called Autism in Adulthood. So about, gosh, I think we’re going on year five now.
So about five years ago, Christina was actually approached by the publisher saying, “Hey, we want to start a new academic journal that centers on autism and adulthood.” So, there’s an entire academic journal at this point that deals with adult issues. And we were able to, when we created the journal, create it with community engagement at all levels.
So, we have autistic community members, not just autistic researchers like me, but autistic people, on the editorial board. Every single paper that comes through needs to be reviewed by an autistic person who is a non-researcher to make sure that it’s not stigmatizing and it’s actually in line with what the autistic community wants.
I would say at this point, I’m feeling very hopeful about the future in this area. There have been tremendous breakthroughs in, I’m not going to say breakthroughs in research, but breakthroughs in changing what researchers’ perception of what autism research could be. There are a number of initiatives to engage autistic people in research.
AIR-P, which is, I can never remember what it stands for, but it’s something like the, it’s something about physical health, autism research and physical health. It is a big federally funded initiative that requires people to do community engagement with the autistic community before they will allow any of their research studies to be part of their systems.
I would say that while it’s going to take a while for all of that to counter the large number of services related studies on young people, that is still a smaller piece of the larger.
Amanda Antell: That’s great. In fact, I actually was really happy with what you said, because I got to tell you, I’m doing another autism project at Oregon State and just doing all the research, and that just depressed me because I talked to multiple different experts from different universities and just what you just said about how there’s actually an academic journal dedicated to adult autism. They did not know it existed. They did not mention that at all. They admitted to me that they weren’t aware of any studies that really addressed that was. So that’s really great to hear at least from you.
Dora Raymaker: So, I wonder what it could be the fields that they were in, because when I talk about autism research and being very large, that’s. It depends on where you go. So, if you’re talking to somebody who is in childhood special education or developmental psychology, that I’m a little bit surprised since the journal has been around for a while and we’ve been a big presence at INSAR and all of that, but in that idea of research, just being very big, it may also depend on what field the people that you were talking to were in.
Amanda Antell: I think that’s actually a really good point, because all the experts I did talk to, I don’t know what they specialize in specifically, but they did say that they followed a very traditional route with the autism diagnostic criteria, if that makes sense, they wanted the RADS toolkits, they really wanted potential autistic Subjects, or people, or patients to fill out RABS forms from when they knew them when they were three.
A lot of them required in person only, and I get the logic behind some of these criteria, but the problem is there’s multiple barriers as to why a lot of people can’t meet these criteria. Like students could be estranged from their family, they could not have, or they could not have any family. They could, there could be a stigma against mental health and neurodivergence in their family, so they never sought it out, or they never heard of it.
Yeah, so I think there is, I think what you’re saying does make sense, because research, as you said, is very large, and if they only specialize in childhood development, or have, or just follow studies from childhood development, or, I really have no idea what they’re basing that on, but that does make sense, what you’re saying.
Dora Raymaker: I’m a transdisciplinary scientist. So as a system scientist, I’m pretty interested in the types of problems that you can’t solve within the silo of a particular discipline, like this doesn’t belong to psychology, but it doesn’t belong to social work, but it doesn’t, so I’m interested in sort of transdisciplinary work.
As somebody who does health services and public health are also transdisciplinary and at least interdisciplinary fields. So, you get this kind of funny thing working across disciplines. I, speaking of stories, there was a, an experimental psychologist that we worked with very early on and in AASPIRE’s history.
And so, Christina comes from public health. She’s an MD PhD. The, or she’s an M D N P H. So, she’s a doctor with a master’s in public health. And we were working with an experimental psychologist and things that you wouldn’t even think about to us. In public health terms, what matters is what somebody’s experiencing, not what score they make on a test.
Who cares what their test score is, if they are experiencing this particular barrier to healthcare, then we need to focus on that particular barrier to healthcare. But in experimental psychology, it was all like, about the, you can’t possibly have people that you don’t put through those tests that you’re talking about, right?
That was, there’s, there are disciplinary issues because when people are being trained as scientists, they get taught specific ways. So, you might have people with an experimental psychology who are getting taught, you have to perform these tests, otherwise it’s not good research. It’s not good, rigorous research and in public health, you’re like, okay, on our demographic questionnaire, our inclusion criteria are that you’re encountering this particular barrier.
Yeah, it’s just, it’s big.
Question One
Amanda Antell: Yeah, no, totally. You already talked a lot about this, but I’ll just ask the question anyways. Just what gaps do you see between neurodivergent communities and autism research and why do you think they exist?
Dora Raymaker: Yeah, no, I have a lot more. I could talk about that for a whole hour. So, some of it is historic, which I did touch on a little bit.
So, when we’re talking about things being big, the history of the disability rights movement is also big. So not all. In a civil rights sense at the same time. So, we start out back after World War I with a lot of disabled veterans returning and people with acquired, I should say, white men with acquired physical disabilities.
Started getting recognized and getting some equity long before, for example, people who were incarcerated in institutions, which is all of us with developmental disabilities, including autism or things that were diagnosed as something else because autism wasn’t actually in the D.S.M. yet, autism existed before the diagnosis, so we are radically behind in a lot of ways, [to] many other disability communities, which isn’t to say that we haven’t made tremendous progress.
So that’s one piece of it is that we as a community and the autistic community is relatively new. Autism wasn’t something that could even be an identity until nineteen eighty, and then it wasn’t until the internet that autistic people worldwide started using fax machines and internet technology to connect and create autistic culture and all. So, we’re all still relatively new and that full parent movement when a lot of autism diagnoses happen. So that’s like a, you’ll never get a linear dialogue out of me. I’m just like, I’m a very nonlinear thinker. But when the things that happened was when autism became a more common diagnosis, a bunch of children got diagnosed with it. So, you have this huge parent movement, and therefore, that’s going on. That’s a lot of policy advocacy for things and priorities around autism research or has really been driven by.
Parents from that first large generation and as they advocated for lots of early intervention and child stuff and then all of a sudden transition issues became a really big deal and there’s a lot of research around transitions to adulthood and then so that’s one thing that’s going on. Another thing that’s going on is just how far behind we are as a civil rights movement in getting our voices heard.
And all of that is struggling against the stigma, the discrimination that society is imposing on us, right? So, they’ll say, because your social and cognitive abilities are impaired, you can’t possibly know what’s good for you. Or they might say, since you can speak for yourself, you’re not disabled enough to know what real autistic people need.
So, these are ways that people in power can silence the voices within the community without going into a whole critical disability studies tangent, there’s that dynamic, and then there’s just time systems are complex systems. Like what we’re talking about, research is a very complex system. It involves many researchers and institutions and funders and policies and public opinion.
And. All of these things in these very highly complex systems, they just move very slowly. In two thousand and five, you’ve got A.S.A.N. [select link to go to Autistic Self Advocacy Network webpage] and the disability community pushing back against the ransom notes campaign, which was an N.Y.U. campaign with these billboards that said terrible things like, I am going to make sure that your son never has a real-life side autism.
So, in two thousand and five, two thousand and six-ish, we banded together and got those billboards removed, but it’s not like you’re going to instantly do away with the kind of social consciousness that thought that was an okay thing to do in the first place as we in the community and as researchers who are supporting community interests. [If you] make change, it propagates through the system very slowly, so you’re going to see changes in those like that rift is going to get smaller.
I’m convinced over time. It’s already smaller than it was twenty years ago, but it takes a long time to get there. I do think we’re on the right track. And then one last thing that point that I’ll say on that topic is. That there’s also a pipeline for autistic researchers that is very, it’s very hard to get us through.
And so, I’m one of, one of the earlier ones that, that have gone through right now, there are a lot of autistic graduate students, which is fantastic. This is autistic graduate students who are planning to go into autism research of some sort, whether it’s. Basic research, biology, or more services-oriented, but it’s not easy for us, right?
We’re a marginalized community and we don’t have a lot of the supports that people without disabilities have. If we’re multiply marginalized, if we’re autistic and queer, or we’re autistic and black, then there is further marginalization that come into that. Part of that rift too is that the people who academia is producing as researchers traditionally have not been autistic.
So, they are not, they don’t like really to know, they don’t. They don’t understand, they don’t have our culture, they don’t get it. So that pipeline of autistic researchers is additionally a part of that, the answer to that question. Systems person, I can never, it’s all interconnected, right?
Lots of pieces and relationships.
Amanda Antell: Yeah. And I agree with all of that. In fact, it’s interesting you mentioned the part where if I’m cognitive and verbal, I’m, I can’t be disabled enough. The first, usually when I disclose to professors, one of the first things they say to me is, really, you don’t seem autistic.
What do we look like usually? Do we come in, I wasn’t aware we’d like changed forms or something. And a lot of it, and I think that makes sense with what you’ve said, because they’re presented with this very limited idea of what autism looks like, where either it’s basically Just essentially nonfunctional or basically media or basically like super geniuses. Sheldon Cooper comes to mind, but he’s even, it’s like the show is even flat-out studies autistic. I don’t think he’s a great example anyways, but it’s like there’s never anything in between and to me that’s why categorizations like high functioning, low functioning, high support, low support, level one, level two, and level three.
I get the idea behind trying to improve the system for us, but overall, it’s just going to result in the same thing where we’re just placed in broad categories and a lot of us are going to fall through the cracks. What I try to tell professors and just any other person I talk to about this is to talk to autistic people directly, figure out what they specifically need to be accommodated.
Yes, it is important to pay attention to their sensitivities, to their learning disabilities, but it’s also important to know How to best foster the best environment for them, if that makes sense, I guess I, I guess what I’m saying, I definitely agree with what you’re saying, and I definitely experienced quite a lot of that myself in academia, which is frustrating, but also just reminds me why I have to keep having these conversations, or at least I think it’s important to have these conversations continuously.
Dora Raymaker: As far as the kind of need to categorize or classify people, that’s a very ableist thing. There’s a great paper, if you Google anti-ableist language and autism research, you should get the paper (select hyperlink to open website containing scholarly article titled “Avoiding Ableist Language: Suggestions for Autism Researchers”) . And it’s got a nice discussion in there about the ableist framing of those types of categorizations, but it also gives researchers and everybody else, what to do instead, like what to say instead, which is instead of using some kind of categorical label, just say what you mean, basically.
Do you mean: [this person] does not use spoken language? Do you mean: [this person] needs additional support for activities of daily living? Just being plain about what the thing is. And then the other thing I wanted to say was in response to you talking about. Professors in the university system around accommodations, which is that I would push universities to think really hard about how much burden they are putting on disabled students.
And I don’t just mean autistic students in general, where you’re taking people who are already being marginalized, discriminated against and given lesser opportunity. And you’re forcing them to do additional work. They have to prove to you somehow that they are worthy of some basic accommodation and to be treated like a human being.
The A.D.A. [open hyperlink to the Americans With Disability Act] is great. I would not be here talking to you without the A.D.A. But I think we need to, and I say we here as educators and as people who are working to advance people through that research pipeline. We need to think a lot harder about how to make our classrooms universally accessible so that students who have disabilities do not have additional burden to work with us to get their needs met, but those needs are just met naturally by how we teach and how we structure our classroom.
Academia is a very is geared very much toward your traditional straight, white, wealthy man who has a wife at home, who is going to take care of everything, and that is, has not shifted much. So, if you are not in that category, even if you don’t have a disability, the academy is already set up against you.
So, I really encourage anyone who has power within the academy at this point to rethink how we might restructure the way we do things to reduce burden on, on students.
Amanda Antell: It’s interesting you mentioned the university’s placing burden on students and just us having to prove that we needed this basic accommodation because I’ve experienced a lot of them and I’ve gotten to this month-long battle with Oregon State recently about the accommodation of flexible attendance because Part of my, course requirements is that a couple classes have to be in person.
And I explained, look, I have autism. I have a sleep disorder. Can you just have these lectures be available remotely? And it was just this month-long fight. I’m not kidding you where it’s like I was going back and forth between the disability services office, the professors, just sending the medical documentation, just proving that not only can, that yes, I can do this class and I can actually do this much better if you can let me just do this remotely. And I did, and I proved that, but I just thought it was ridiculous that I had to spend a month fighting for that.
Dora Raymaker: Yeah, and that’s a great example of what I’m talking about. And it’s not just you, it’s also a single mom who can’t get away from her kid, and remote is the only way that she can actually attend the class.
And it’s a way that, that structures of oppression continue to operate.
Question Two
Amanda Antell: I’m expecting another fight with Oregon State, again, because I have to, because I’m going to ask that I can do lab activities remotely in Beaverton, in the Beaverton area, because another in person course I have to take is, has a lab portion, unfortunately, but it’s just basic activities at a stable that I’m pretty sure I’ve done a million times before, so I’m hoping I can just get away with that, but if I have to drive down every week, I guess that’s what I have to do.
But it’s just that where it’s, I know it’s going to be a fight. I know I’m going to have to do the same song and dance again. And I’m just hoping that they’ll be somewhat reasonable about the lectures, but then I’ll have to fight for that as well, probably. And it’s just annoying and frustrating to me that I have to go through this.
And it’s just how ableist the disability office actually is. And to me, the disability office has become really toxic, and I don’t want to spend too much time talking about this because we have to move on, but I think legally they’re set up to be weaponized against us, in my opinion, because they can legally say, Hey, we have a disability office to meet the needs of disabled students.
But the reality is disability services can say whether or not you’re disabled enough to actually receive the accommodations. And if they say no, the university is essentially off the hook with that, unless you keep escalating it. And I just think that’s ridiculous and really toxic and extremely ableist, of course.
Historically, autism and A.D.H.D. were considered only in adolescent or younger white boys. Research is now recognizing this condition in other genders and races. But does this initial belief permeate current studies?
Dora Raymaker: I would say yes, but again, I’ve seen movement on the very idea that the question even gets asked, wouldn’t have happened twenty years ago.
It would just be like, we’re dismissing your study because it has women in it, right? But it has created a bias in research findings, and it gets back into biases in research that exists in other ways. So, if you have a general population study where the survey is not accessible to people with cognitive disabilities or communication disabilities, then you’re not actually capturing good data on us in a general, we’re not getting.
I think it’s that type of problem where you have a bunch of studies that were done in a very narrow population. So, we know a whole lot about things that are, we know a lot about what types of employment supports are good for affluent white boys. You don’t know a whole lot about what employment supports are good for.
I’m very interested in intersectionality, and I do a lot in my studies to understand how people who exist in intersections have a different experience than other people. There are researchers whose entire research agenda is dedicated to understanding gender differences or autism in women, people who identify as women and girls.
There’s been a lot of qualitative studies on it. I’m not super up on that literature, but there, there is a bunch out there. And a lot of people who are really interested in that, but it is also getting back to all of the tests. You were talking about the researchers who insist on doing very specific tests to prove that someone is autistic, and that’s one of the ways in which you’re excluding people who probably should be included in studies, is there’s a disparity in the diagnostic instrumentation that is geared toward boys, it’s geared toward affluent white boys specifically, There are also racial and ethnic disparities in diagnosis.
It goes all the way down deep into culture and as well as money to actually get a diagnosis and it’s the same kind of systemic equity issues, but it percolates up through. Again, it’s a thing that I see changing, that people are looking at, that people are acknowledging. And it is something to always keep in mind.
I think I would encourage anybody who listens to this to always put on your critical thinking filters every time you look at any piece of autism research and think about who was this done on, who was the population? What does this say? Have they adequately provided transparency on who this is?
Interestingly our studies and a lot of research has had trouble getting male oriented people to participate in it because there’s another bias that’s at operation, which is that. People who identify as female are more likely to participate in research generally. There’s that happening on the other side too.
And then also in terms of gender differences, another thing to keep in mind is that there have been studies that have shown, statistically shown, strong statistics, that people who are neurodivergent and people who are autistic are much more likely to be gender minorities, much more likely to be trans, non-binary, not the mold.
So that’s another kind of complication in all of this.
Amanda Antell: Yeah, I would agree with all that. I was not diagnosed with autism until I was thirty-one. And according to my mom, I was different even back before kindergarten. She took me to three different experts and they told her I would grow out of it, and that she just has to essentially make me spend as much time around other normal people, I don’t think they use that language, at least my mom didn’t mention that, but they essentially told her that she had to make me normal, which we both know is probably the worst thing you could ever say to a parent with an autistic child.
So yeah, I experienced that in terms of the research bias because I definitely think those attitudes this was early nineties by the way, I had this was before I was in kindergarten, so it had to it had to be like ninety-four, ninety-five, something like that, but yeah, I definitely felt that.
And as for the intersectionality between gender minorities, I do see that a lot, too. And I found a paper that describes that well, in my opinion. As autistic people, we’re so used to essentially making up our own rules to survive in everyday life, so of course we’re going to just reject gender norms that don’t work for us.
At least, and I agree with that well.
Dora Raymaker: Speaking from my own personal experience, which I realize I totally forgot to give you my pronouns, which are any, I don’t care. Whatever you feel like I am, I don’t have a sense of gender. So, I, it’s a social construct that I’m not the person who is really great with social constructs, at least following them or recognizing them.
Question Three
Amanda Antell: What needs to change in terms of how autism and other neurodivergent conditions are researched?
Dora Raymaker: Oh, I don’t know if this is a “needs to be changed.” It’s more of a what I would like to see is just simply continuing to get more inclusive research, and that’s In the research team. So, it might be taking a community-engaged approach and having autistic people and neurodivergent people be co-researchers in research projects.
It doesn’t have to be, it could also be getting more neurodivergent people through that, that career pipeline. And they go into research and can bring lived experience into research that way. It also means getting more neurodivergent people involved in ethics boards. And I work on a project that’s getting we’re putting together institutional review, review board certification process for people with cognitive disabilities so that they can get certified by ethics boards and do research. So, it’s that it’s policy, like getting more people on the IACC, getting more neurodivergent people involved in creating the prioritization that drives funding, it’s getting neurodivergent people more on the board of foundations that fund research. I’m a systems person, so I’m always thinking about these things in terms of whole system. So, I guess my overall answer is to just get more neurodivergent people involved in every single aspect, because as our lived experience really needs to be driving this. I like to give people the analogy of women’s health, right?
You can’t really do good women’s health if you don’t involve any women, because Congress seems to think sometimes that you can, but realistically, from a “your kind of lived experience of your biology” is a thing that is important in advancing science in a direction that is going to be helpful, but yeah.
So, engagement at all levels in all ways in who does peer review in how your journals are structured in. Your university admissions and who’s teaching, who is teaching in a, it’s getting more autistic voice into the classroom so that when you’ve got somebody who is training the next generation of special education people, their class has included readings by people from within the community.
So, they’re not going into special education thinking in medical model framing. I think it’s a kind of all-pervasive giving us more opportunities to become part of the world and therefore changing the face of the science. But the simple, the small simple thing that I can give to everybody right now is just listen to what people with actual lived experience of neurodivergence are saying, privilege that knowledge as actually, more valuable than what you learned in a book from people who haven’t had those experiences and act accordingly.
Question Four
Amanda Antell: Yeah, I definitely agree with all of that. In fact, it’s actually interesting just how many professors I’ve spoken to over the years that either have relatives with autism or have had students with autism, but they’ve never actually spoken to either one of them about how to actually accommodate them, or what their needs are, or just what life is like for them. I’m not sure why there’s such reluctance. I guess from the professor and student relationship, I can definitely see why because they don’t want to breach any privacy, they don’t want to, they don’t want to risk offending the student, and that’s fair.
But, in cases like mine, where I’m openly inviting you to talk about autism with me because I usually disclose pretty early on in the term that I have autism. If there are any miscommunications or a discussion board or something just let me know, and I’ll clear that up because that has happened to me before. Every email I just come across badly and I have to explain what I meant.
But again, it’s just interesting how often they just don’t either don’t have an interest or they don’t really, or They sometimes even forget that I have disclosed to them. It’s like they have my disability accommodation form, but they just forget that I’m offering to talk about autism with them and how to actually accommodate me and what accommodating me actually looks like.
And that conversation piece, that communication piece really needs to be included in studies, like just how important that is. And to me, if we do that, just talking about autism in general becomes more normalized. But I think it’s still pretty badly stigmatized, correct me if I’m wrong, or somewhat stigmatized at the very minimum.
Dora Raymaker: Yeah, I think everything you say, it’s taboo to talk about, right? So, it’s taboo. There’s also, I think people get worried about violating HIPPA or you don’t ask people about their medical conditions. It’s a very medicalized view. Of course, from my perspective, like it’s culture, this is identity, it’s culture, it’s opening up, it’s doing anti stigma work, it’s trying to dismantle systems of oppression, it’s understanding where ableism is and trying to do things to counter it, but from the perspective of a lot of people who aren’t, they haven’t been confronted by having to deal with that because it’s not, it hasn’t hurt their lives any, right?
They’re not disabled, it’s not affecting them. It’s hard to see, to understand, and then to know what to do with. Allyship is a big, confusing other topic of conversation and professors. Yeah, I don’t know. I, as a professor, as somebody who teaches I can see why boundaries might come up because students might try to take advantage of you and what’s going on here.
On the other hand, I’m very pragmatic and what I care about is that the student learns the thing. I could care less how they learn the thing, what they need to do, how long it takes them to learn the thing. This is a thing. I want you to learn it. Let’s work together to get you to learn the thing. That is not necessarily a Philosophy that’s shared by all professors, they have their own too.
Amanda Antell: Yeah. I understand that, and like I said, I can understand why professors would be a lot more hesitant, even if I, if there are students like me who do openly want, are open to discussing it with them, in fact invite them. But in cases, in rare cases where I have had professors talk to me about my autism, it’s always been after the term.
So, there is no conflict of interest there. And they’ve always been really good conversations. And they always say, and they say that they’ll take what I said and try to make it better for their class.
Dora Raymaker: I don’t see there being a conflict of interest. Technically you’re supposed to speak with a student about their accommodation needs at the start of the term.
And then I strongly feel that it’s an ongoing conversation because sometimes you don’t actually know what accommodations you need until you get deeper into the class. I thought this was going to be okay, but it turns out that, Oh wait, these papers are hard enough that I need a screen reader. So do you have PDF versions or whatever?
You don’t always know what you need until you get deeper. And my opinion is that accommodation isn’t something that you just set up once and it’s over. It’s an organic and ongoing process. And it’s about making it possible to learn the thing, right? If you’re not accommodating somebody, then they’re not going to meet the learning objectives.
Amanda Antell: Yeah.
Dora Raymaker: That’s how we could do a whole podcast on that.
Amanda Antell: There are like several I could do several disabilities, podcasts about disability services at Oregon State and just my theories at other institutions. I feel like it can be very depressing to a lot of people.
Dora Raymaker: But your professors aren’t tied to that enough.
If there’s any professors who are listening to this out there, you can accommodate your students regardless of what Disability Services said. And if you have students that seem to be struggling, it’s okay to invite in a conversation. It’s okay to Say, Hey, what do you need to make this? What do you need from me in order to make this class work for you?
It’s not, I approached professors when I was in graduate school. I approached them. I’m not going to get into my own disability services story, but I started just bypassing disability services and going straight to my professors. And I found that the most part, most of them were pretty reasonable in working with me.
And I will never make my students prove that they need something in order to give it to them.
Amanda Antell: I definitely have started doing that with Oregon State, especially with the flexible attendance thing, because one of my arguments getting that accommodation was that actually one professor has said to me in an email ahead of time that they’d be okay with this.
Another professor was not, but one professor was, and that really deflated Oregon State’s argument against me.
Dora Raymaker: Professors have control over what we do to accommodate students. Again, if you’re a professor out there, there is, there are things you can do to help alleviate the burden on your students in this regard.
Question Five
Amanda Antell: I get that there is a worry of being taken advantage of, but I would say: believe your student and have conversations with them about what they need in your classroom and how they can succeed. Because that’s only going to help them and that’s only going to help you. What attitudes need to change when talking about how to accommodate autism and other neurodivergent conditions in companies, universities, and other industries?
Basically, what is working and what is not working in terms of accommodating these conditions?
Dora Raymaker: We’ve segued into that already. I think a lot of it comes down to disability models. And I think I’ve mentioned a couple of times in this conversation, medical models versus other models. A medical model of disability is when you define disability as something that happens because of a defect in a person.
Like they have a medical condition, there’s a, something that is not functioning. And from that definition of disability, of course, the way to get rid of it is to fix the condition. We can cure it, or we can remediate it, or we can teach people to cover it up. I think the biggest attitude that needs to shift is away from That definition of disability and toward a social or socio ecological framing of disability, which defines disability as a mismatch between person and their environment, a person’s functional needs and their environment.
So, it doesn’t say like you don’t have a functional limitation. It just says that your environment isn’t supporting it. And the fact is that our society does accommodate people continuously without even realizing it, but what they accommodate are the functional limitations of the majority of people who do not have disabilities, they are being accommodated.
I like to also give people this kind of thought experiment about, imagine that you as a hearing person live in a world where ninety-nine per cent of the population doesn’t hear. So, the entire environment is not really doing a whole lot to modify what sounds get made. So, you’re in a loud world with a lot of cacophony and people not paying attention to any of that, would you be disabled?
So, we consider being able to hear not a disability, but if you were in a world where nobody else could hear, it would be. So that’s thinking about things differently like that. And the moment you start thinking about this kind of like in contextual way that we support or don’t support particular.
Functional abilities or limitations, it opens the door very much to thinking about the way that we accommodate people really differently. What is, what in my classroom is not, is creating a mismatch with this student? What is it that typing and writing is really hard for them? I don’t know, just do your, speak your assignment into Zoom, turn on the captioning and send me the transcript.
Why not? You’ve learned the thing. So that’s a big thing. And then the other thing is really, as I said before, is just listen to us. The, I’m not going to go off on my knowledge power lecture, but the privileging of particular types of expertise needs to be rethought. So instead of looking at what some expert from a rehabilitation scientist.
Who has no lived experience is saying as necessary, just ask your employers, your employee, ask your, ask the community, ask your student just what do you need and kind of privilege that as lived experience. Cause it’s not like we know nothing. Like I just published a study that was, that’s about what the experience of autistic people in skilled professions are saying about their experiences and they list a whole bunch of things that workplaces can do to be much more accommodating and really set their employees up for success. I think listen to us is the other shift, I would say, but the biggest one is really to try to get away from either medical model or charity framing, which is disability is something that we need to take care of and work toward more of a social or socio ecological framing of the way that we view it in general.
Amanda Antell: So, the way I look at this is that, and this might, I might be projecting here, but the way I feel that universities and other institutions look at us is that they think they’re doing us a favor by forcing us to essentially work and function in the same conditions as our neurotypical colleagues. Oregon State’s argument against me was that they didn’t think I would learn the objectives properly if I didn’t interact with my classmates or function the same way as my classmates and I’m like, actually, no, I just don’t learn that way. That’s just not happening. I’ll be honest, I’m not in your class to make friends. I’m there to earn a grade. So, it’s that whole, I’m doing you a favor by trying to normalize you attitude. What I feel like is, that really needs to change and just accept how we are and just let us function the way we need to and just let us work with people the way we need to work.
Dora Raymaker: That’s bubbling up from those medical or charity models. Yeah. We need to help you or There’s something broken in you that we need to remediate. That’s why I think that the biggest point of leverage is really a paradigm shift in how we view ability and function in the first place.
Amanda Antell: To me, a good example of what I usually use in a conversation is, say someone had glasses or hearing aids, I would basically say, that would be like me saying, I think you can see well enough without your glasses, or you can hear. Or you can hear enough without your hearing aids, or you can read my lips well enough without your hearing aids.
So, you can function like me. So, you can function on the same level as me. I’m making you daredevil. I am doing you a favor. That’s, when I put it in that context, they really get what I’m saying. So, I definitely agree with you. I swear like a switch goes off in them where it’s like suddenly they’re empathetic, suddenly they really see.
Suddenly they really hear themselves talk, if that makes sense.
Dora Raymaker: Yeah, and those are all great ways to just expose the pervasive ableism that is driving a lot of these things. Because people don’t want to be mean, they don’t want to cause harm. Some of them do, but in general, a lot of them just have not needed to confront any awareness of that.
Amanda Antell: I think it’s just how, what they were taught, as you said before, and just, it’s not just about confronting it. It’s the fact that they are just, they learned from an old model, and they just never had a reason to question it.
Dora Raymaker: Yeah, exactly. And that’s the kind of pervasive culture that we’re in and you don’t notice it when you’re in it because it’s just the way things are.
So, it’s not until you, Amanda, come along and Give them a way to challenge or see it or expose the mental model that they’ve been operating under and how that’s not the only one and it might actually not be a healthy one.
Closing Statements
Amanda Antell: Yeah, definitely. I’m really happy with what you said before about how there are like studies on autistic adults and I’m hoping that the paradigm does shift towards something more positive.
More inclusive and just really making autism more normalized. I really do think that’s a major step that we as a society have to take. Just making autism and neurodivergence normalized in the fact that it’s not something bad. It means that our brains function differently, but that doesn’t mean that we’re defective.
In fact, I would say it means the opposite.
Dora Raymaker: Yes, we are awesome and shiny and can do amazing things.
Amanda Antell: Like I can do anything regarding with animals, even if it’s subjects, I hate, like I’ll use physics. When I was learning the core sciences, physics, that was easily my least favorite core science, that if I could relate it back to animals, I could learn the topic very well, which is why electricity was very hard later on.
That was painful. Sorry, but it’s just allowing us to focus on our special interests. That can really help us, that really expedites the learning process, at least for me. I’m not saying it wouldn’t work for everyone, but that at least makes. That’s more engaged in the topics and more excited about it.
Math is a really big struggle for me especially on the earlier levels where it’s just basically abstract equations. I go through this process I call lather, rinse, repeat. I have to literally practice a formula and a concept for hours at a time before my brain finally understands how to do it. But it has to be like one specific way.
While I do identify as high functioning autistic myself, it’s just, I understand why other people don’t, and I’m not going to ask that other people identify any other way other than the one that feels comfortable for them. And the reason I bring that up towards the end is because I know I said I was against the labeling system earlier in the interview, but I do identify as high functioning myself because that term resonated with me when I was first diagnosed because that was the first time I felt a sense of identity. I’m like you in the sense that I’m not really attached to my gender. I still identify as female, but I don’t really care about it if that makes sense.
I guess my only closing statement is for academics or professors out there who are listening to this. Please take what Dr. Raymaker and I are saying seriously. Just include autistic people, especially students, in conversations and figure out how to accommodate them by talking to them.
I’ll give an accommodation that I would need in a workplace for example. I need people to tell me when a fire drill is going to happen because those fire alarms are physically painful to me. It’s like a drill be going into my skull. It’s that bad. I’m not saying don’t have the fire drill but let me leave the building ahead of time.
Don’t try to force me to do the team activity with the fire drill. So, it’s just stuff like that where it’s not going to even cost you any extra money, just talking to us and giving us a sense of security and safety, I think is really important.
Thank you very much, Dr. Raymaker. I really enjoyed having you on, and if you have any interest in participating in another podcast, please let me know.
Dora Raymaker: Thank you for having me.
Conclusion
Amanda Antell: Thank you for listening to today’s Let’s Talk Autism podcast episode. I hope autistic listeners gain context into why we are created a certain way in academia and where these misconceptions stem from. For any neurotypical professors out there, please keep in mind that a student’s accommodation needs are more than a sheet of paper you receive from disability services.
Talking to the student about their lived experience and believing them is the first step in fostering a better learning environment and more inclusive institution. While this discussion is not for everyone, I think it’s important to talk about the historical context of prejudices so we can best understand how to dismantle them.
I hope you enjoyed my discussion with Dr. Raymaker and tune in for the next episode.