Meet Two Autistic Researchers Changing How Autism Research Is Done

ROXANNE KHAMSI: This is Science Friday. I’m Roxanne Khamsi. Since the very beginning of research about autistic people, neurotypical scientists have been at the helm. Because of that, plus the invisibility of autistic adults in our society, a big chunk of the research has neglected the needs of autistic people. Sometimes it’s gone beyond that and even been hurtful and harmful to the very people it aims to help.

Until just recently, there have been very few openly autistic researchers who are studying autism. But there’s a growing group of autistic researchers who are bringing both their expertise and their own lived experiences to help shape the future of autism research. Here to tell us more are my guests, Dr. TC Waisman, a leadership coach and a researcher studying autism and higher education based in Vancouver, British Columbia, and Patrick Dwyer, who is a PhD candidate studying sensory processing and attention in autism at the University of California, Davis. Welcome, both of you, to Science Friday.

TC WAISMAN: Thank you.

PATRICK DWYER: Thank you so much for inviting us, yes.

ROXANNE KHAMSI: So, Patrick, what have neurotypical researchers historically focused on when it comes to autism research?

PATRICK DWYER: Some people have been doing more basic biomedical type research, looking at the genetics of autism, looking at animal models, doing various kinds of neuroscience work. It’s been neglecting a lot of the most important barriers that we actually face. A lot of the challenges that are faced by autistic people, including those with high support needs, actually have to do with societal discrimination, with a lack of availability of supports, with a lack of inclusiveness, with stigma, all of these things.

They’re very important to all autistic people regardless of ability. And that was being completely missed. Meanwhile, some of the efforts to promote cures were actually and still are harmful by telling people that there’s something wrong with them, by trying to force compliance. So, yes, I would say that definitely our field has a legacy of harm that is, unfortunately, very serious.

ROXANNE KHAMSI: TC, what do you see as the biggest problems in autism research right now?

TC WAISMAN: Yeah, I totally agree with what Patrick is saying. And to build on that, our research typically and historically hasn’t necessarily focused on creating better outcomes for autistic individuals in terms of our health, our education, our livelihood, our well-being. So unfortunately, that’s translated to an emphasis on deficit perspectives and autism and looking at our lack of abilities, rather than strengths, talents, et cetera. And it’s also privileged non-autistic perspectives, research focused on mainly white male representations of autism.

So those generalizations still exist either in plain or subtle ways today regarding what autism looks like in a person and how it’s accepted societally. Also people like me were missing in research, people from different cultural backgrounds, people from different ages, and that kind of thing as well.

ROXANNE KHAMSI: So a few years ago, the two of you co-founded the Autistic Researchers Committee, which is under the International Society for Autism Research, known also as InSAR. What inspired you to do that? TC, do you want to start?

TC WAISMAN: For me, I just didn’t see myself. I didn’t hear my voice in autism research. And because I was late diagnosed at 48 years old, it was really frustrating for me that the research sort of seemed kind of siloed, in a lot of ways. And so for me, this was an act of resistance and an act of activism, bringing autistic voices to decision-making processes within InSAR. And InSAR was ready for it, and InSAR was in agreement that this was needed.

PATRICK DWYER: One of the goals that we had was really to try and promote networking among autistic researchers to help our community sort of come together a little, as well as to make the InSAR conference itself more accessible for autistic researchers, just because there’s just a lot of barriers, a lot of things that, unfortunately, make it quite difficult for autistic people to attend research conferences.

ROXANNE KHAMSI: And TC, you mentioned that you were diagnosed with autism at age 48. Can you tell us a little bit more about your research and how you got into it?

TC WAISMAN: When I was diagnosed at 48, by the way, it was one month prior to starting my doctoral degree. So I knew very little about autism. And so I changed my research focus and focused really on how the heck did I get here? How am I autistic and in the education system? And I’m this old, and this is happening, and I’m not getting the supports I need. And I’ve fallen through the cracks. So my research really focused on that, how higher education leaders, faculty, and staff can enhance services and outcomes for autistic individuals and neurodivergent individuals at the post-secondary level.

ROXANNE KHAMSI: Patrick, do you have a reason that you got inspired to study autism?

PATRICK DWYER: Yeah, so because I am a privileged white male, at least in part, I got diagnosed earlier than TC. I was 11, so but it was still late enough that it answered a lot of questions. I knew I was different from other people. I was looking around for an explanation of autism, provided that it connected me to a community of people.

And over the years after being diagnosed, I was able to see just how many challenges our community is facing, just how marginalized we are, just how much people are struggling with mental health, with employment, with just trying to exist in the world. And so, of course, I wanted to do something to see if we could break some of these barriers.

ROXANNE KHAMSI: And your research, I think, also focuses on sensory processing. Is that right? How would you explain that to somebody who’s not familiar with what that means?

PATRICK DWYER: Well, that, too, comes directly from my own experiences. I was struggling a lot with sensory overload, especially when I was younger in the school system, where there’s just so much sensory stimulation. It’s hard to describe, though, because it’s so variable, depending on the specific autistic person and the context that they’re in and what sensory stimuli they’re exposed to. Sometimes it’s that people have a real aversion to particular textures, scratchy fabrics. Tastes in food can be a huge thing. And if we can’t get some of the foods that we can actually tolerate, that can be a big problem.

But then there’s also the auditory aspects, where you can just be stressed and completely overwhelmed if there’s too much auditory stimulation. But then there’s also particular sounds that could be really aggravating and annoying or even if they’re not overwhelming or quiet sounds, they can be really distracting and make it impossible to focus. And it’s all very contextual. It depends on attention. I think it depends on one’s mood and mental state. And it’s something that, unfortunately, is very difficult for other people to understand because it’s perhaps a bit outside their experience.

And because it’s hard to understand, because it’s so very variable from context, often, people can doubt that it’s real. And I got a lot of that when I was younger, people thinking that I was making some of it up or rationalizing, well, this environment is noisier than that environment, but Patrick is fine in that noisy environment, but not this somewhat quieter one. What’s going on there? And there’s still a lot of things that we don’t fully understand about sensory processing and autism.

ROXANNE KHAMSI: Do you find that there’s a disconnect between what neurotypical researchers more often focus on versus what autistic communities want out of research?

TC WAISMAN: And I don’t want to generalize about neurotypical researchers and neurodivergent researchers’ priorities, but I can tell you that coming from a particular community informs me in a different way about the priorities from within that community. So for example, I’m Black, Indigenous, Pacific and South Asian, and I’m autistic, and so my lived experience is, I don’t get to put those down. I don’t get to forget about it. The world treats me in a certain way every moment, every time I walk out the door.

So when you come from inside that experience, there are subtle pieces of knowledge. There are questions, dreams, concerns that are relevant to us that wouldn’t even land on the radar of someone who comes from outside of the experience. For example, for me, the barriers that existed to getting a diagnosis, the cultural nuances that make it difficult to see us as autistic, the biases, I was looked at as having behavioral issues rather than being autistic.

And we’re talking about a community, an autistic community that is as deep as all the cultures in the world, as wide as the spectrum range of expressions of autism, as vast as the kinds of intersections that include age, co-occurring disabilities. So our research priorities from within the communities are already plentiful. And here we are, in all our intersectional glory, to represent ourselves fully in autism research.

PATRICK DWYER: Absolutely, yes, yes. If you look at the distribution of where autism research money is going, it’s to things like neuroscience, understanding the causes and etiology of autism and doing surveillance to figure out how many autistic people there are. And really, it’s only a very small pittance that is going to these very important priorities that TC is saying. And I’m not saying that the things that I was naming before are valueless, but there’s clearly a difference in the priorities.

And so I see that we tend to gravitate towards much more applied research than focusing on society and societal barriers to a much greater extent than research that’s focused on cure type things, obviously, research that’s exploring identity and intersectional identity and all of those barriers and challenges and discrimination. There’s research looking at the accessibility of different systems there. I think it is quite different on average, what your autistic, autism researcher would most likely be studying versus a neurotypical autism researcher.

ROXANNE KHAMSI: TC, I was actually curious if I could follow up and ask you what you think the reason is that more funding isn’t going to research led by autistic people?

TC WAISMAN: Well, I think things are changing, and this is the wonderful thing that’s happening. Things are changing in funding, for example, the Autistic Researchers and Review Board, which I was a part of and Patrick is a part of. So we’re part of that, sort of being able to review research that’s coming out and ensuring that there are certain aspects of the research that are being upheld, that are more respectful to us, such as participatory research.

And it’s partly being driven by social aspects of our disability community, pushing for more respect, pushing for more understanding, pushing for our voices to be included, to be heard, to be a part of the true collaboration throughout the research process from research question all the way to findings in a real, true participatory manner.

PATRICK DWYER: Like TC, I’m optimistic about the direction we’re heading. And I just wanted to add, though, that it can be a bit slow to get there because new things take time, and people are frightened of them. And people will do the kind of research that they’re trained to do. So it takes time. People’s opinions are shifting. The attitudes are shifting. As TC says, what we’re starting to prioritize is starting to shift, but there’s still a lot of more work that needs to be done in that direction.

ROXANNE KHAMSI: This is Science Friday from WNYC Studios. I’m talking with two researchers who study autism, Dr. TC Waisman and Patrick Dwyer. I’m curious to ask you both what you think autistic researchers bring to the field of autism research that a neurotypical research might not.

TC WAISMAN: I think we bring our whole selves. We bring our lived and intersectional experiences. And that’s often missed in research all the way from inquiry to findings, that our tapestry of understanding, we’re removing the one-dimensionality of research. A lot of research is siloed and focused on one aspect of an autistic trait or of autism. And we’re much richer than that. We’re intersectional with our co-occurring disabilities. We’re intersectional with our cultural aspects and all of the nuances in between.

So we bring insight and awareness and knowledge and sometimes even a desire for practical solutions to problems that most non-autistic researchers are not even aware we need. So this perspective, I think, is really key.

ROXANNE KHAMSI: Patrick, there is this idea that people who are autistic shouldn’t be included in research on autism because they can’t study it objectively. How would you respond to that?

PATRICK DWYER: I completely disagree with it. Why would neurotypicals be objective and autistic people uniquely biased? Yes, being autistic informs the perspective that we bring to our work. And it does so in ways that I think TC just very eloquently articulated are often very positive. But being non-autistic and looking from the outside at autism does not make one objective.

It just means that one is differently biased, and one is biased to value neurotypical norms and perhaps to not understand the sorts of challenges that we experience from the perspective that we have, looking from our own experiences outwards. It’s just a different positionality.

Would you think that if we should say that gender studies should only be done by men because women would be biased when it comes to gender because that’s a more marginalized gender? Of course, it’s ridiculous. So we need people coming from all sorts of different perspectives, especially those of those who have been marginalized and left out.

TC WAISMAN: Yeah, I mean, Patrick said so eloquently as well about can you imagine this being studied from the outside? For me, as a Black person, for example, can you imagine there’d be research on Black people without collaboration, without understanding the culture, without inclusion, without true participatory inclusion in that? When the question comes up about whether we’re biased, when we’re othering our people, our autistic people anyway from the perspective of outside of it, that, in itself, is a bias, and Patrick clearly defined that.

ROXANNE KHAMSI: And your research for your PhD focused on how higher education could be more supportive of autistic students. So what do you see as some of the big barriers to being an autistic person in higher education?

TC WAISMAN: Yeah, so in my experience, by far for me personally, the biggest barrier is the lack of education about autism in the universities and colleges, everywhere from disability services to faculty, staff, students, and leaders. So for me, that’s my personal experience. And we would like to see that there’s recognition that near diversity be included in DEI. It’s a DEI plus issue, so Diversity, Equity, and Inclusivity.

That we make sure that our voices are included in the decision-making and policies and changes that happen when we’re talking about accommodations. That we establish disability cultural centers for institutional initiatives to promote neurodiversity and disability inclusion and acceptance.

ROXANNE KHAMSI: So to wrap up and just look to the future of autism research, what does that look like to you? TC, do you want to start?

TC WAISMAN: Yeah, I really hope autism research continues to evolve, that we continue to center intersectional autistic voices in meaningful ways. That participatory research becomes almost old hat because it’s considered sort of the new standard. That we include cultural lenses in our research, that we value the priorities of older autistic people, and that research becomes nuanced enough to include autistics who have other co-occurring disabilities that inevitably impact the research findings in ways that are not neat and tidy, but are also necessary to know.

PATRICK DWYER: Yeah, having more community partnership, especially with autistic voices, but really bringing people, all [INAUDIBLE] together, including parents and professionals, as relevant. And letting people set what the research agenda should be to a much greater extent, I think, will address a lot of the issues that we’re seeing right now.

ROXANNE KHAMSI: Well, thank you both so much for joining me today.

TC WAISMAN: Thank you so much for having us. We really appreciate it.

PATRICK DWYER: Indeed.

ROXANNE KHAMSI: Dr. TC Waisman is a leadership coach and researcher studying autism and higher education based in Vancouver, British Columbia. And Patrick Dwyer is a PhD student studying developmental psychology at the University of California, Davis. We want to say a special thanks to Ira Kramer for consulting on this story.

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