We had the good fortune to talk with autistic autism researcher Dr. TC Waisman amidst the glorious chaos of the 2025 annual meeting of the International Society for Autism Research, INSAR. Dr. Waisman shared crucial insights about their work in universal design, academic accessibility, forming the INSAR Autistic Researchers Committee, and their lived and research experience with BIPOC inclusion and advocacy.
Shannon Rosa: TC, I’m so grateful to you for being here. I was wondering if you could tell us about yourself, about your intersecting identities and intersection and overlapping disabilities, and about the work you do.
TC Waisman: You bet. My name is TC and it stands for Teresia Vakaloloma. I am an Indigenous Fijian, South Asian/Asian, non-binary, Autistic woman. I was born in Fiji and moved to Canada when I was seven, in 1976. My father is Nepalese/Indian and Fijian/Solomon Islander, My mom is Indigenous Fijian. Of course, I did a genetic test and found I significant amount of Asian blood, which makes sense if you see my confused hair.
Also, I have a daughter who’s 29 years old and they were diagnosed at 25. I was diagnosed first which is somewhat unusual.
Shannon: It usually goes the other way, with kids getting diagnosed autistic before parents.
TC: That’s what I’ve read. I was diagnosed at 48 years old in 2017. My mom died, and I recalled an incident with her, and I thought, “I’m going to go get this checked out.” I was diagnosed and went straight back to school to get a doctoral degree studying autism…as you do when you’re Autistic.
Shannon: Amazing. You said you’re multiply disabled. Are you willing to talk about that?
TC: Yes. I have arthritis that can sometimes be debilitating and make it difficult for me to get around. I have autoimmune diseases (asthma, allergies, eczema, arthritis), that cause a lot of chronic pain, and I suspect I have ADHD.
Shannon: Then I am doubly appreciative to you for being here, because conferences are brutal.
TC: It can be hard. Thank you.
Shannon: Your work is so varied; you cover so much areas. To start, could you talk about the educational inclusion that you do?
TC: As soon as I was diagnosed, I wondered how at 48 I was just starting my doctoral degree when most people are done by 30 years old. I recalled all the times I tried and failed at higher education as an Autistic person, and knew I had to try to make a difference. I focused my doctoral research on how higher education leaders, faculty, and staff can enhance services and outcomes for Autistic students. Of course, in grad studies, there were no accommodations, so I was learning about being Autistic, studying autism on a doctoral level, and learning what kinds of accommodations I needed as an older Autistic student.
Shannon: You also have said that you found it really hard to advocate for yourself for your disabilities not just because people dismiss people who present as female, but also because people dismiss people who are BIPOC?
TC: That’s right, yes. When I show up in a room, I’m Black first. That’s what people see. They don’t see the invisible disabilities right away. This informs not only my worldview, but the kinds of things that I want to work on, and the ways I want to challenge the barriers I’m experiencing.
For example, often in research we see people in silos. We talk about autism, findings, and outcomes, but what about the individuals behind the statistics ? We aren’t just a general pool of Autistic people; we are made up of many intersecting identities that inform our experiences in the world and different identities have different barriers so even though we may all be Autistic; we may have vastly different experiences of being Autistic in society.
Shannon: You are also on the editorial board at the journal Autism in Adulthood. What does that entail for you?
TC: I’m proud to say I’ve been a part of AIA since Dora Raymaker and Christina Nicolaidis developed it, and invited our first gen crew on board. When we started, it was hard work of course getting a journal off the ground. And now, as an editorial board member, we carry out peer reviews, discuss ideas for roundtables and special issues, and make decisions about guest editors etc. I’m very proud to say that we currently have a Journal Impact Factor of 9.9 and a Cite Score of 10.0 which is incredible for such a young journal.
Shannon: Starting is bumpy. You also founded the Autistic Researchers Committee here at INSAR?
TC: Dr. Patrick Dwyer and I co-founded and co-chaired the Autistic Researchers Committee (ARC) with an incredible team of dedicated Autistic and non-Autistic folks who wanted to see change. For me, creating the ARC was partly a result of going to INSAR 2018 in Rotterdam and not being able to bring somebody who could assist me. My husband traveled to Rotterdam with me, and was not able to come in—which meant that I had to leave every time I was sensory overwhelmed, which was often at that meeting. I really wanted to work towards creating better access at INSAR for fellow Autistic researchers in this and other areas.
Shannon: That’s so distressing, but not an isolated incident. Yesterday we met with another autistic panelist, Grant Blasko. His mother Cindy is his support person. And they would not let her into the conference unless she paid.
TC: My husband was able to come into this INSAR for the first time, so we are thrilled and he paid for the pleasure, but at least I have someone here who is educated about my challenges and can assist me to get through my panel talks, posters etc. Here’s the thing, we were just talking about this last night at dinner, I was overly grateful Dean could come with me but other meeting attendees were saying, “Why are you grateful? It’s still inaccessible if you can’t pay.” I said, “Listen, at least he can come …every small win counts.” I’m not sure if I have the right attitude but I am grateful because it means I have better access to the meeting. If I couldn’t bring Dean this time around, I couldn’t be here. Some moments are easier than others but this meeting in particular was difficult for me because of the physical space.
Shannon: That’s not right. Here in the U.S., under the ADA, that should not be happening—or it should cost a lot less. My autistic son pays to swim at a therapeutic pool in San Francisco, and it is free for me to go as his aide. That’s how it should be. I am sorry to hear that is not happening at INSAR.
Can you tell us more about the impact that the autistic committee’s been having?
TC: ARC has been building a strong community of Autistic researchers since we started. We developed resources such as autism training and the INSAR Community Collaborator Request to bring Autistics with lived experiences together with researchers. The current committee did a great job at this meeting hosting Autistic researchers on a social night, and we are so grateful for the continued community gathering. I would say there were 60+ people there. Enough to fill the room and spill out into the common area which is a great sign that, despite what some people believe, we are community-oriented and are capable of being social.
In Melbourne, Australia, we informally started this yarn thing where local autistic researchers put together packages with yarn, crochet needles, and instructions, and made them available in the Autistic researchers room. This gave us an opportunity to crochet in speaking rooms so that Autistic people on panels, could visually see other Autistic people in the audience crocheting and know that we were there to support them. It also served as a way to stim in public.
Shannon: That’s phenomenal.
TC: This was not a direct Autistic Researchers Committee initiative. It was as a result of bringing Autistic researchers together, which allowed us to challenge the status quo by stimming in public in an academic setting and normalizing ways to make conferences more accessible for ourselves. Our incoming president at INSAR, Brian Boyd, spoke of continuing to make INSAR more accessible which I appreciate. That’s why we at ARC created the autism training for board members and people at the conference centres we visit. We’re very proud of the ARC committee and the hard work they continue to do for INSAR.
Shannon: Oh, nice. My co-editor Carol Greenburg and I have not been to INSAR since Montreal in 2019. This is our first time back. Carol, you said you wanted to ask about Universal Design.
Carol Greenburg: I’m autistic as you probably already recognized. I’m interested in Universal Design in the usual sense of design, but also design of the house, design of a space that is most welcoming and accessible to autistics and people of all backgrounds and abilities.
TC: Universal Design (UD) comes from an architectural background. After World War II, when suddenly we had an influx of soldiers returning from the war who were newly disabled and experiencing post-traumatic stress disorder, people became more aware of disability given they now knew people who were disabled. The disability rights movement kicked in, and laws changed as a result of their activism. Building and landscape architecture was being legally mandated to include ramps, handrails, Braille in the elevator, open outdoor spaces for easy movement etc.
Cities implemented curb cuts in footpaths for wheelchair accessibility, and what they found was that non-disabled people preferred using the curb cuts to walk, bike, push a stroller, or wheel their luggage into the crosswalk. Architects realized that if you start by designing for universal use, you can meet the needs of as many people as possible, but you also have an opportunity to design beautiful environments. Some of the best building and landscape architecture was designed for accessibility. A great example is the 4 acre Enabling Village in Singapore. It is a whole village designed for those with disabilities including Autistics and it is phenomenal. I meant to visit if for a few hours and stayed for 3 days. It made me cry being in a space that fully met my needs.
Universal Design grew to include Universal Design for Learning (UDL). Educators began to create ways that rubrics and syllabi could be more accessible by utilizing UD principles. Courses themselves could also be designed using UD principles, so instead of having to beg for accommodations, all students regardless of disability or diagnosis or a lack of diagnosis, are able to receive their education in the most accessible way possible. Everyone wins if we design for those with the most needs.
Today, my focus is learning how to marry Universal Design in a culturally respectful way. Dora [Raymaker] spoke this morning about how epistemology is multiple, simultaneous, and fluid. In this vein, I take that as inspiration to try UD from a cultural lens using Indigenous methodologies to create more accessibility for those outside of mainstream cultures. I was really inspired by what she talked about in her keynote, and I look forward to trying to be more fluid in my work.
Shannon: As somebody who’s a proponent of Universal Design, do you have any suggestions for the organizers of INSAR, in how they might be able to make their conferences a little bit more accessible? Carol said that she sees so many autistic attendees melting down.
TC: What makes INSAR successful is that we attract a lot of wonderfully diverse people. For instance, I was told that almost 10% of attendees here in Seattle INSAR are Autistic. That is wonderful and I hope that number grows in the future—but it also means that we have the opportunity to attend to the needs of all our invited guests. If we do it right and we keep attracting people from the community we claim to care about, then we need to ensure they have a safe accessible place here.
The Autistic Researchers Committee championed a sensory room and our own Autistic Researchers Committee room. These initiatives were pushes in the beginning. I’m happy to say they are status quo at INSAR meetings now. Current challenges some of us face are meeting rooms and physical spaces that aren’t accessible to Autistics. They may be designed for those with physical disabilities but not those with sensory and physical challenges.
Carol: This has been hitting a lot of us. It’s been hitting me today because I have a sudden new physical limitation that I hope, with more physical therapy, will go away. Who knows? I am having trouble with walking, and with the distance from the entrance to the elevators that will get us to the rooms where the conferences are happening and not having to take escalators after having taken stairs, after having walked over. There’s no shuttle bus anymore. There was one advertised at our hotel. It’s gone now.
All of this means I had a meltdown this morning just physically getting here. That’s happening with autistics, I think, throughout this conference. The outreach feels to me, and this may be wrong because of you and your group and all the hard work you’ve put in, but it feels to me like the outreach is always to the individual. Ignoring the systemic nature of the layout, even the physical layout and everything else. I was commenting to another autistic researcher about how the geographic layout of this building is covertly and overtly hostile to people with visual problems and with physical limitations.
TC: It can feel hostile for some of us which is hard to explain to those who don’t experience this. I’ve had a difficult time with the graduating heights of the escalators and especially the last one going from the 4th to the 6th floor. I suffer from vertigo so that last one coming up to floor 6 feels rather dangerous. Thank goodness for the elevators but I had a hard time finding them to begin with.
I’m earnestly trying to get across that barriers for some of us can look like open, inclusive environments to others so it’s vital that conversations happen between meetings so we can learn from these challenges as an INSAR community and build stronger accessible bridges to the future.
Carol: It’s so common among us to have escalator challenges and need to use elevators instead of escalators. Not having a handy elevator is a big deal for us. It’s way in the back. By the time I got there, I was indisposed physically. That’s not acceptable.
TC: I’m sorry to hear that.
Carol: That’s a problem that could have been and should have been addressed long ago. Just to have a shuttle that gets us to the entrance that is close enough to the elevator, or that is close enough to where there might be rails, helping us get ourselves places, would be so helpful. That doesn’t seem like too much of an ask, but for every individual to have to do it for themselves and not even know how many other autistic individuals are doing the same, to have to take guesses about that. That’s stuff that needs to be involved in research.
TC: This is partly the reason why I was involved in creating the Autistic Researchers Committee. Our voices together make a difference not just at INSAR or in our universities, but on planes, airports, trains etc. We’re used to being told that our challenges are our own individual problem. Coming together gives us a stronger voice to create positive change for everyone.
Carol: Anybody, any human being, can become disabled at any time, very suddenly.
TC: Disability activist Judith Heumann said there are only two kinds of people in the world: people with disability and people yet to have a disability. We’re not fighting just for our needs; we’re fighting for a better future for all of us who are lucky to grow old in society.
Shannon: That is so true. Again, I’m very, very grateful to you for talking with us.
TC: Thank you both for your time and all the amazing work you do for our community.
