The International Society for Autism Research conference, or INSAR, is the largest autism research conference in the world. Each year, it attracts thousands of researchers from dozens of different disciplines — neuroscience, genetics, immunology, pediatrics — to share their work with one another. It regularly draws some of the biggest names in the field.
But, historically, the INSAR conference hasn’t exactly rolled out the red carpet for the people whom its research is intended to benefit. I’ve attended multiple INSAR meetings, both because I’m a journalist interested in reporting on the latest research and because I’m an autistic person interested in learning ways to improve my daily life. The experience of being surrounded by thousands of researchers — many of whom had never met anyone like me except as a subject, and some of whom had never met anyone like me at all — was at times surreal. Being autistic at INSAR is like attending an exquisite, days-long feast in which you are the main course.
The tension between the conference’s scientific and autistic communities has occasionally been fodder for sensational media coverage. But increasingly, I’m finding that the media narrative doesn’t match reality. This year, I attended my third INSAR conference, in Montreal, and I couldn’t help but notice the increased presence of autistic attendees, both in the audiences and at the lecterns. At a conference where autistic people have traditionally been greeted at best with confusion and at worst with hostility, I’m cautiously optimistic that we are finally carving out a place for ourselves in the autism research community — not merely as subjects of research but as partners in its pursuit.
To be fair, the perception of discord between autism researchers and autistic adults is based on more than a few grains of truth. The autism research community has a troubling history of dehumanizing the people it purports to serve. Outgoing INSAR president Dr. Simon Baron-Cohen has long asserted that autistic people experience something called mind-blindness: We are allegedly incapable of genuine empathy, imagination, and self-reflection. He attributes this blindness to a lack of function in mirror neurons, the neurons that help people map the movements and emotions of others onto their own bodies. In 2001 Baron-Cohen wrote, “A theory of mind remains one of the quintessential abilities that makes us human.” He went on to cite a study in which a small sample of autistic children appeared to lack theory of mind. The inescapable implication was that they lacked humanity.
Other researchers have been more direct in their dehumanization of autistic people. Steven Pinker, a giant in linguistics and cognitive science, wrote of autistic people, “together, with robots and chimpanzees, people with autism remind us that cultural learning is possible only because neurologically normal people have innate equipment to accomplish it.”
Ivar Lovaas, the father of applied behavior analysis, one of the most commonly used therapies for autism, said of autistic children, “you have a person in the physical sense — they have hair, a nose and a mouth — but they are not people in the psychological sense.” He applied electric shocks, pinches, and slaps to autistic children in order to, in his view, make us into real human people.
The discord between autism researchers and autistic adults has been painted by some as a debate over neurodiversity. Coined by the Australian sociologist Judy Singer in the early 1990s, neurodiversity has as its central tenet the idea that neurological variation is normal and natural, and that characterizing neurological differences as illness — without considering how autistic people think about ourselves and our lives — is a mistake. The idea has evolved into a civil rights movement by and for autistic people. An offshoot of the disability rights movement, it asserts that people with cognitive differences like autism deserve full human rights and inclusion in normal society.
To some scientists, however, the view of autism as a neurodiversity issue seems to run counter to a fundamental premise of much autism research: that autism is something to be treated or cured.
The tension between those two views lingered over me like a cloud when I attended my first INSAR conference in 2017. It was a lonely affair. I saw a handful of autistic people I knew from social media — some researchers, some fellow writers — but in every session the assumption seemed to be that people like me couldn’t engage in scientific research as anything other than test subjects. I felt invisible.
My life-preserver during that first INSAR experience was a woman named Carol Greenberg. Carol is a short, no-nonsense Jewish mother from Brooklyn who wears her hair in a sharp gray bob. She used to edit Star Trek novels, but these days she focuses on local political activism and serves as an editor for the site, Thinking Person’s Guide to Autism, which is, in my opinion, one of the best resources available for parents of autistic children. Carol’s son is autistic and has an intellectual disability, and Carol herself is on the spectrum.
Carol had been attending INSAR conferences since 2012 — before I’d received my autism diagnosis and before I had even considered the possibility that I might be autistic. She, too, described feeling lonely at her first conference: “I felt like there were maybe one or two other autistics there. And so we’d go to presentation after presentation after presentation, and each one was worse than the one before… All scientists talking about us without us.”
But for Carol, even the 2017 conference was an improvement. “It’s much better than it used to be,” she told me, delighting in how much of the content focused on mental health and other topics of everyday relevance to our lives.
At the 2018 INSAR conference in the Netherlands, I still couldn’t escape the feeling of being an outsider — and, in that regard, I wasn’t alone. Though the organizers had been working to make it easier for members of the autism community to attend, the registration cost was still out of reach for many people. I noted several accessibility problems and a lack of commitment to inclusion, and my request that the conference hire an accessibility coordinator or consultant went unmet.
The issues of accessibility and inclusion took center stage in the run up to the 2019 INSAR conference, held earlier this year in Montreal. There was even an article in Spectrum, an autism research news magazine funded by the Simons Foundation, that played up the discord between scientists and autistic attendees who had been pressing for firmer commitments to inclusion. “Tensions ride high,” the headline proclaimed.
But as one of the conference’s estimated 2,500 attendees, I found that the Spectrum article didn’t reflect my experience at all. I spoke with dozens of researchers across dozens of disciplines at the Montreal conference, and while I felt that some people were a little uncomfortable engaging with me, I didn’t feel antipathy. I felt like I belonged.
To INSAR’s credit, organizers seemed to have taken seriously the call for inclusion, offering more sessions on social sciences, reduced rates for autistic attendees and their family members, and a sensory break room where autistic attendees and others could escape the bustle of the conference.
But I also picked up on something I hadn’t noticed before: Autistic attendees were milling about everywhere at the conference, even if most people didn’t recognize them.
“[We] don’t mention it on our posters. There’s not ‘Hi, I’m autistic!’ written on it,” said Elliot Keenan, a doctoral student in psychology who was presenting his research. Keenan was among about a half dozen young autistic researchers I met at INSAR this year, investigating everything from psychiatric comorbidity to mouse behavior.
According to John Elder Robison, a notable author and the only openly autistic board member of INSAR, 3 to 5 percent of this year’s INSAR attendees identified as being on the autism spectrum. There are likely even more autistic researchers who chose not to disclose. (One autistic researcher confided to me that he feels pressure to separate his identity from his science.)
Robison says he’s proud of the growing representation of autistic researchers at INSAR. And despite my past experiences and my healthy distrust for autism research, I see things improving too.
A motto frequently used in the neurodiversity community is, “Nothing about us without us.” At the world’s largest autism research conference, that message may finally be getting through.
Sara Luterman is a freelance journalist based outside Washington, D.C. You can find her writing in the Washington Post, the New York Times, Slate, and other outlets.
Wondering what’s the source of the Pinker quote? As an autistic person and academic contemporary of Pinker’s (my Ph.D is in cognitive linguistics), though a “lowly nobody” in the academic and cultural circles in which he and others like him move, I nonetheless admired much of his work … until reading this. I’m horrified, appalled …
I am horrified as well. I googled the phrase and it’s right out of his 2003 book (page 62):
Great article Sarah! Indeed the “about me, without me” situation arises all through the lives of people with differences-be it autism, Down syndrome, orientation or psychological difference-by doctors, therapists, teachers and even parents. It is the “fix it or eradicate it” approach to difference, the homogenization of society, the maintenance of the “safe, known” place. And despite the gains we have made in inclusion, diversity acceptance and recognition of ability are rooted ONLY if participants as yourself continue to speak up, and challenge those outdated judgements.
Thanks for sharing – I loved the tone of your piece.
I have read articles on Autism Research trying to determine if I have autism. Yes, I have certain quirks that could be considered on the spectrum (routine reliant, lack of empathy, etc) but nothing I have read where I can positively consider myself being autistic. Successful banking career, although looking back, I did not recognize opportunities for high level advancement and often intentionally squandered them! Would just like an article in layman’s terms, not full of fancy words and theories, that would give me more direction. I have contacted other Autism organizations who were less than helpful. I just want to know with some certainty that I am autistic or not!! Thanks for listening.
How would your life be changed by knowing?
I have 2 grown children on the spectrum and my husband has self diagnosed. He has struggled his entire life with “not fitting in” and with rejection of his ideas because a sizeable percentage of the people he comes in contact with don’t really like him. As we learned more about autism, he realized that that diagnosis explained a lot of his issues. But knowing that he is on the spectrum has not made him happier. A few people have been a little more accepting perhaps but the people that loved him before, still love him and the people that didn’t still don’t. He has no official diagnosis but he tells everyone that he is autistic.
It is clear that there is a huge range of characteristics that fall under the autism umbrella. It is a wide spectrum. Are you on it? Probably.
We have no way to test for autism other than looking at symptoms and behaviors and to say that the “tests” are imperfect is a huge understatement.
I am not a scientist and my expertise in the area comes from a lot of reading and trial and error in raising my children and living with my husband but I wish you the best.
Thank you for this article. Researchers often lose sight of the humanity of their subjects. Autism research is no different, with respect to that. In fact, perhaps researchers in general are autistic without even knowing it. I have Asperger’s-autism, and so I can relate to your feelings of isolation. Part of the reason researchers have done a poor job of engaging with Autistic people is because a lot of researchers are just not that ‘bright’! They may be ‘academically, and technically gifted’—but they lack the creativity to innovate better research protocols. So, don’t take it too emotionally—which is an ironic thing to say to an autistic person. :-).