The State of Autism Analysis, Prague Model — THINKING PERSON’S GUIDE TO AUTISM
It’s hard to believe we have been covering INSAR, the annual meeting of the International Society for Autism Research, for fifteen years. The autism research landscape, being expansive and varied, both has and has… not evolved during that stretch to focus on the needs of existing autistic people, and their families. (It should be noted that our own attitudes about autism research and autism orgs have shifted considerably since we recapped our first INSAR meeting in 2011.)
At INSAR 2026 in Prague, we encountered many same-old-same-old attitudes about autism research, competing with small and sometimes larger challenges from fresher, neurodiversity-grounded perspectives. Unlike in meetings past, INSAR organizers seemed less comfortable side-lining ordinary autistics—which is appropriate, given that non-autistic researchers owe their careers to the existence of the autistics they study. As Dr. Monique Botha-Kite noted during a spot between their multiple excellent INSAR presentations,
“At David Mandell’s keynote at INSAR and it’s excellent so far. It’s refreshing to come to a keynote and not feel objectified as an autistic person. He’s talking about policy in the US across states and what translates and doesn’t. I always forget just how humiliating it often is to be at autism conferences where we talk more about “autism” than “autistic people”. It’s nice when a keynote cares about our outcomes so much more than isolating us as mechanisms that can be reduced to a petri-dish.”
In that spirit, we rejoiced at not only the presence of Dr. Damian Milton, but at his giving a keynote as well. How big a step this is was not lost on any autistic attendee: At our first 2011 INSAR (then called IMFAR), there were only a handful of openly autistic people, and few openly autistic researchers. Dr. Milton is an autism research pioneer finally getting the rock star treatment he has always deserved, as one among many openly autistic luminaries at the conference.
Even the most cynical among us can’t deny INSAR’s ever-increasing autistic presence. For many autistic attendees this year, the joy of representation was palpable. Attendee Jamie Chase crowed, “Tonight was amazing. The Autistic Researchers Committee social at #insar2026 was an opportunity to connect with other autistic researchers and feel safe to be yourself. I sat at a table full of amazing people who comfortably info dumped about all the things for hours and enjoyed it thoroughly.”
I think my first time at INSAR I met ONE autistic autism researcher. At #INSAR2026, there ARE HUNDREDS. 💕♾️🙌
[image or embed]
— John Marble (@johnmarble.bsky.social) April 24, 2026 at 2:32 PM
It meant so much to us that INSAR’s Autism Researchers Committee social was filled to overflowing. Now that the autistic attendee contingent includes a great flock of researchers, autistic people are not so easy to dismiss. We felt strongly that autistics, in or out of the Autism Biz, didn’t have to push back at INSAR as much as before. Autistic Researcher- led panels and keynotes were packed, while many of the more traditional presentations by non-autistic participants were more lightly attended than they usually are.
That signals progress, but INSAR is still not as inclusive a conference as it should be of autistic people, given that it wouldn’t exist if autistic people didn’t exist. As Dr. Mary Doherty of Autistic Doctors International commented both IRL and on social media, autistic people at INSAR 2026 were still treated like “Poor cousins at the wedding,” in keeping with her recent writing about Autistic Shame:
At INSAR, autistic people were “present. Invited, even. But not quite welcome. Watched. Wary. A quiet, collective waiting: would we be an embarrassment? This was at a conference about autism. About us. A social gathering of autistic researchers was oversubscribed and it was wonderful. But it felt marginalised. Hidden away at the end of the conference, once everyone else had gone offsite.”
We also heard from frustrated autistics who were not represented at INSAR, including about who wasn’t there and why. INSAR refused a virtual option, leaving many potential autistic attendees out. We find that decision insupportable, whatever the reasoning behind it. Recordings are now available—keynote talks publicly, other sessions for INSAR members only—but this is not the same as being able to follow along and have conversations in real time. Also, many who would have liked to be onsite were not. “Cost, class, age, sensory overwhelm are all factors,” observed non-attendee Christine Jenkins, from Canada.
Dr. Jackie Ryan, Dr. Sue Fletcher-Watson, Shannon Rosa, Dr. James Cusack, and Carol Greenburg
There is also a new-ish political dimension to who will and will not get to attend INSAR for at least the next few years, as the meeting will not be held in the United States through 2029. Perhaps this was because so many non-American researchers either could not or were too scared to come to the U.S. for INSAR 2025 in Seattle. Europe and North America should not comprise most of the locations of an international conference. Cape Town, South Africa is an encouraging choice for next year’s INSAR 2027.
We hope, as INSAR continues, it will also take more note of the need to improve the quality of autistic lives, as measured by autistic people’s own standards. That was the message we saw over and over at poster-sessions, at standing-room-only panels by early career researchers, and at the AutINSAR autistic priorities discussion we hosted (a high point, both IRL and online). That is the message all of us—scientists and non-scientists, autistics and non-autistics—should carry back from INSAR to our own countries. It is a message heeded, at least in part by some members of INSAR leadership, like Dr. Christine Wu Nordahl.
TPGA editor S. Rosa with Dr. Botha
But there was still old-guard weirdness. Outgoing president Dr. Brian Boyd’s opening talk on 25 years of INSAR history described how the society was funded in 2001 by openly cure-focused parent orgs, e.g., Cure Autism Now (folded into Autism Speaks 19 years ago)—without commenting on how harmful that org’s rhetoric and messaging were to autistic people, and how they ignored underserved and disadvantaged autistic people who already existed. Including in his INSAR 2026 audience.
For further context, at the conference Dr. Simon Baron-Cohen, often criticized by self-advocates for his past work, made statements that by INSAR standards were shockingly progressive.
Simon Baron-Cohen is reflecting on the rise of neurodiversity, autistic people’s human rights being a focus, applied research & movements away from medical model being the dominant model. Simon suggests that there is more of a focus on human rights & that many autistic people’s are failed #INSAR2026
— Dr Aimée Fletcher (@aimee_speaks) (@aimeespeaks.bsky.social) April 22, 2026 at 8:17 AM
Not many INSAR leaders besides Baron-Cohen spoke out in favor of autistic rights; instead we saw them call yet again for a “back to the basics,” deficit model, hard science, cure-and-treatment theme in many primary talks. (The same is true of mainstream INSAR 2026 media coverage.) Such attitudes prioritize well-established careers over newer and often autistic researchers’ work. Most of the material helping existing autistic people and their families was relegated to smaller sessions and posters, well-attended as those were.
Dr. Stephen Shore & Dr. Steven Kapp
This type of division is not helpful. Any thinking person understands the uselessness of a false dichotomy between so-called hard and soft science. Any thinking person should fully buy into the goal of combining all kinds of real science, testable, evidence-based, and peer-reviewed. One of TPGA’s founding principles was to draw a neon bright line between real science and pseudoscience.
Dr. Steven Kapp was not pleased by the dissonance between INSAR’s stated goal of spreading the knowledge of good scientific research while simultaneously refusing to let go of the old guard’s disturbing preoccupation with breaking autism into subtypes:
“As INSAR started, Past Presidents’ Panel acknowledged we don’t know how to subtype autism & its controversy but it will be done anyway. As INSAR comes to end, Tuesday’s IACC meeting plans to adopt “profound autism” for US research & policy. Retrenchment beyond progress.”
It is strange to watch so many non-autistic autistic researchers push for subtyping autism, despite autistic advocates’ and many researchers’ clear disinterest: At the conference’s “Profound Autism” poster sessions, presenters and their posters rarely used the label, and when we asked the researchers directly about why their posters didn’t talk about “profound autism,” we were told “we don’t use that term.” Clinically, we already have three levels of autism in the DSM-5. Practically, subtyping autism under the medical model, especially using flawed criteria like IQ, just gives clinicians and other practitioners more ways to misunderstand and dismiss the almost unlimited variations of autistic lived experience, which is not helping autistic people with high support needs live better lives..
I desperately want more research into ways to help my son communicate, eliminate his chronic pain, and increase the supports available for him and his peers. #ProfoundAutism advocates want more ABA, more institutions, and cure/prevention research. Our loved ones are the same, but our goals are not.
[image or embed]
— Shannon Rosa (@shannonrosa.bsky.social) April 30, 2026 at 11:48 AM
Dr, Lawrence Fung presenting a poster
Regardless of the topic, and whether autistic or not, we don’t think any attendee had the time to process all of the information presented at INSAR. Here is a sampling of sessions that made us think:
- The Profound Autism SIG (Special Interest Group): This ongoing group’s focus remains, unfortunately, on “solving” the problem of “profound autism” through behavioral and related normalizing approaches, and on defining “profound autism” on standardized measures like low IQ and low adaptive skills—even though these are not autism-specific traits but co-occurring disability traits. However the Czech part of the presentation was all about meeting autistic people where they are, which was refreshing.
- The oral session on First-Person Perspectives: Isolation and Solitude: Autistic people’s experience of Misunderstanding and (un)belonging: Even though social disability is considered a core feature of autism, it is also often a misunderstanding of what autistic social needs and desires are. Presenter Dr. Monique Botha-Kite says a huge problem is that autistic people are rarely allowed to exist on their own terms, and that one of the most profound things we can do is provide autistic people space to just be, so they can follow their internal compass, and live well.
- The oral session on Innovations in Enhancing Autistic Well-Being: Dr. Louisa Man’s talk on Intersectional Experiences of Autistic Trans and Gender Diverse Individuals Receiving Psychiatric Emergency Care focused on how transgender and gender diverse autistics, compared to cis autistics, are more likely to have anxiety, suicidality or self-harm, and a suicide plan. Gender-affirming and neuro-affirming health care is CRUCIAL, but this requires specific staff training.
- The panel on Examining the Impact of Intensity in Early Intervention: The session was, unsurprisingly, mostly pro-ABA therapy. We appreciated Ruixi Guo presenting her work with Dr. Kristen Bottema Beutel (who couldn’t attend) on adverse events in intensive interventions like ABA. People tend to think that if an intervention doesn’t involve drugs, monitoring for adverse events is not needed. This is not true. Unless we have a protocol for monitoring adverse events, they will go unreported.
- The panel on Between-Neurotype Communication Factors, Preferences, and Tools for Improvement. How do autistic and non-autistic people navigate gaps in communication, including non-speaking autistics? We were specifically interested in Travis Dow’s presentation about the emerging system AutomaVic, which is a passthrough mixed reality system, with a virtual keyboard for spelling and embodied VR. The communication partner can walk a person through the process, no extra wearables necessary. The real room stays present, and VR elements come in too (like Pokemon Go).
Ruoxi Guo and Shannon Rosa
Most of the autistic INSAR 2026 attendees are probably still exhausted, three weeks later. The event was overwhelming, with more than 2200 attendees whizzing by at all times. It was also not even remotely autism-friendly: Fast-paced, intense, few breaks, and most hotels were not near the event space. I’m sure many of the non-autistic “autism expert” attendees didn’t give a second thought to the grit and tenacity of the autistic attendees. That is systemic privilege for you, no mean-spirited intent, while overlooking an autistic frame of reference.
And as attendee John Marble commented, yes, he is autistic, but he was not the only person who was confused, writing, “I’m begging conferences to provide printed programs and clear signage onsite and not just rely on apps. I honestly cannot cognitively follow the schedule in the #INSAR2026 app, nor figure out where to go, nor tell what is a session, poster presentation, or something else.”
No electric hand dryers at INSAR 2026!
There were some improvements for the autistic experience, such as the bathroom sign that read, “Hand dryers are currently switched off to reduce noise for participants with sensory sensitivities. Please use paper towels instead. Thank you.”
It’s good that INSAR not only listened about how much autistic attendees loathe the jet engine shrieking of air-propelling hand driers, but actually did something about it. Many people were grateful, because it is a concrete step forward for sensory accommodations. However, autistic attendees past and present noted that they had been specifically asking about this accommodation since 2019, and others said that this accommodation finally happening at the 25th INSAR was good but not exactly progress.
Dr. Georgina Perez Liz and her poster
The seemed to be general agreement among autistic participants that the dedicated sensory room needs improvement going forward. A standard conference room with the lights dimmed and the door closed didn’t even approach the accommodation autistic attendees needed this year. Even INSAR 2025 had a cardboard box of fidgets! A sensory room needs actual spaces for people to retreat and cocoon, soft chairs, beanbags, cots, and headphones and some sort of portable colorful light generator for sensory seekers. The more autistics can control their own micro-environment, even for a short break, the more prepared they will be to participate in the central activities of the conference that most need autistic input.
We travelled home looking forward to seeing our families and local friends, but for your editors, coming back to our homes in the United States was also jarring. It wasn’t just the usual jet-lag or sorting of whatever family businesses piled up in our absence. We are citizens of an increasingly erratic, autocratic nation. Like all Americans we are still drowning in misinformation from RFK Jr. and HHS, plus we were immediately greeted with our newly feckless federal IACC (Interagency Autism Coordinating Council) meeting and pushing through possibly illegal decisions, including plans to adopt “profound autism” for US research and policy over the protests of its autistic non-speaking members. We are also furious about attacks on the Voting Rights Act, which directly affect disabled people and our families.
We must speak among ourselves and with others about our plans and suggestions for everyone grappling with advocacy in an increasingly authoritarian and war-plagued planet. Even those among us who have claimed an apolitical stance until now are recognizing that our national political environments affect funding for research. Funding pauses negatively influence the quality of research, which then affects policy that research helps generate. It’s an unecessary vicious circle, and we don’t know when it will end.
When we further take into account the variance of capacity for autistic people and all disabled people, we must acknowledge that working toward a better future will look different from person to person and from day to day. We must cling to the understanding that all of the work matters and that it is essential to keep looking for even the most fragile and temporary places of agreement, tempered by a refusal to negotiate with autocrats. This spring, we saw positive change in Prague. Next year in Cape Town, may we see even more evidence of global improvement in quality of life for autistic people.
Prague’s Water Wheel and Vodnik (water demon).
