On a hot May evening in Austin, Texas, Monique Botha stepped into the opening reception of the 2022 International Society for Autism Research (INSAR) meeting. Botha, who is autistic and uses they/them pronouns, had traveled from the University of Stirling in Scotland to attend the large annual gathering of autism researchers for the first time. The room was crowded with hundreds of people, and the bustle was overwhelming.

But Botha soon found Noah Sasson, professor of psychology at the University of Texas at Dallas, who was chatting with a couple of graduate students. Botha had been in contact with Sasson through Twitter for years but had never met him in person, and the two had planned to meet up at INSAR. After chatting for a while, the group migrated to a nearby taco place for dinner. The conversation bounced from research trends to movies, to reality TV, to what it’s like to be neurodivergent in a predominantly neurotypical field — something everyone at the table except Sasson had experienced.

Botha noticed that sometimes Sasson just listened quietly, but when he did chime in, it was from a place of genuine interest. Soon Sasson mentioned an unfinished paper he was struggling to revive, and Botha helped him find a way to reframe it. Botha sometimes feels tokenized when talking with neurotypical researchers, who often seem to want only cursory approval from an autistic person for their latest study. But from Sasson, Botha instead felt a lack of defensiveness and a rare intellectual reciprocity.

“That kind of allyship is really appreciated,” Botha says, because it means autistic academics aren’t alone in their fight for research that can truly make a difference for autistic people.

Sasson, 47, grew up in Chapel Hill, North Carolina, in a house where the news was always on. His mother has an activist streak, his father is a Syrian immigrant, and “civil rights issues were always talked about in my household,” says Sasson, who remembers watching the documentary “Eyes on the Prize: America’s Civil Rights Movement” on PBS with his parents.

Judging from his family, it would seem that Sasson was destined for life in academia. His father was a professor of religious studies at the University of North Carolina at Chapel Hill and later at Vanderbilt University, and he is renowned for his work on ancient Near Eastern civilizations. His mother has a Ph.D. in English and directed the masters in liberal studies program at Duke University. One of Sasson’s two brothers earned a Ph.D. and studies reproductive behavior in horseshoe crabs at the South Carolina Department of Natural Resources in Charleston.

But early on, Sasson wasn’t sure what he wanted to do. It wasn’t until his junior year at Franklin & Marshall College in Lancaster, Pennsylvania, that he declared English literature as his major, because he enjoyed getting class credit for reading novels. After graduation, he worked for a few years as a teaching assistant at an elementary school near his hometown, a career path spurred by an interest in child development and summers working as a counselor at a YMCA camp in Chapel Hill. But long teaching days required high energy, and he decided he couldn’t see himself corralling elementary students for the coming decades. “I kind of was more of a quieter type that wanted to think about ideas,” he says.

Sasson had already been considering how a child’s background shapes their development, and he shared this growing interest with his parents. Through academic connections, they arranged for him to meet Steven Reznick, a developmental psychology professor at the University of North Carolina at Chapel Hill. The two bonded over a shared affinity for early rock ‘n’ roll music (Sasson now has hundreds of the late Reznick’s old vinyl records), and Reznick took a chance and invited Sasson to volunteer in his lab.

Sasson started working with autism researcher Kevin Pelphrey, who was a graduate student at the time. “He just seemed so brilliant to me,” says Sasson, who enjoyed tinkering with equipment alongside Pelphrey and mulling over ideas in the lab; it was the kind of deep thinking he’d been searching for.

Sasson officially joined Reznick’s lab as a graduate student in 2000 and helped Pelphrey test out a new eye-tracking system in autistic adults. That study, led by Joseph Piven, professor of psychiatry and pediatrics at the university, found that people with autism spend less time looking at others’ facial features than non-autistic people do, and it resulted in one of the seminal facial scanning papers in autism research. It also proved that Sasson, though a newcomer to research, could hold his own. He doesn’t self-promote, and he’s never “the loudest guy in the room,” Piven says, “but he just always really understood stuff at a deeper level than most people.”

Round table: (From left to right) Doctoral student Desi Jones, Noah Sasson and his wife and primary collaborator, Amy Pinkham, sit around a table.

The eye-tracking paper garnered a lot of attention, and Sasson’s interest in autism research grew. He became fascinated by the early papers of Simon Baron-Cohen exploring theory of mind. And he began to interact with autistic people directly, most notably during his dissertation on how face processing develops. Sasson drove all over North Carolina testing autistic participants as part of his research and came away thinking they “had this unique, really interesting perspective on the world,” he says.

Sasson moved over to Piven’s lab in 2005 for a postdoctoral fellowship, where he continued his eye-tracking work, but a year and a half later he followed his then-girlfriend (now wife), Amy Pinkham, to Philadelphia, where she was studying social cognition in schizophrenia. They both did postdoctoral fellowships at the University of Pennsylvania in neuroscientist Ruben Gur’s lab, and the following year, Sasson began work on eye-tracking with autism researcher Robert Schultz at the Children’s Hospital of Philadelphia.

The couple moved to Texas in 2009, after Sasson found a home at the University of Texas at Dallas and Pinkham landed at Southern Methodist University (in 2014 she joined Sasson at the University of Texas at Dallas). Sasson began setting up his own lab, which proved to be challenging at first. He’d come from autism research powerhouses at the Children’s Hospital of Philadelphia and University of North Carolina, where the infrastructure is well established, but at the University of Texas at Dallas, he was starting from scratch. He leaned into collaborations, including work with Piven exploring autism-related traits in families, and he continued honing the eye-tracking skills that had made him an attractive hire for the university.

But after a few years, eye-tracking work began to lose its meaning for Sasson, and by 2013 he had hit a wall.

The problem, Sassons says, is that he realized these studies are often detached from the actual experiences of autistic people. Looking over his body of work, he sometimes wondered if anything would change if all of his papers suddenly disappeared. This research “didn’t strike me as actually ever trickling down to having any impact whatsoever on the world,” he says. It was comforting to be able to secure funding, but he was already feeling burned out.

At home, Pinkham knew he was questioning his direction. The couple have two children, often collaborate on research and have published two dozen papers together — a reflection of how the fields of autism and schizophrenia often cross-pollinate. Pinkham and Sasson had admired each other’s work even before they were a couple, back when they were classmates in graduate school, and now they were forging their careers alongside each other. The issue, Pinkham says, was that Sasson needed to decide if he still wanted to “get funding, sometimes for what seems like funding’s sake, and not necessarily for good scientific reasons,” or branch out and try something new.

As he mulled over his future, Sasson joined Twitter. At first, it was so he could see what others were saying about his research, but then he started following autistic people (including Botha), and it exposed him to research he might not have come across otherwise. In particular, he read the papers of Damian Milton, who developed the double empathy problem, which conceptualizes social difficulty as a two-way issue between autistic and non-autistic people.

This was a lightbulb moment for Sasson, who found himself wondering why this idea wasn’t being explored more expansively. He thought that this was where empirical work should go, and that it would be not only intellectually interesting, but also truly beneficial for autistic people.

He began applying those concepts to his own work. In his 2015 study that originally intended to test whether non-autistic people misperceive the facial expressions of autistic people, Sasson detected subtle hints of stigma from non-autistic people. In truth, non-autistic people accurately identify the emotions of autistic people, but they tend to rate these expressions as overly intense and less natural-looking than those of non-autistic people.

And in a study of college roommates, Sasson found in 2016 that a mismatch in social style, rather than the style itself, negatively affects relationship quality. For example, pairs of roommates who both scored high for aloofness on a questionnaire assessing autism-related traits, rated their relationship as more satisfying than pairs in which only one roommate was aloof.

“Noah is one of the first and one of the most vigorous and creative researchers” honoring neurodiversity-driven perspectives. Steve Silberman

Sasson began to view social disability as a lack of compatibility between a person and their social environment. And that, in turn, caused him to question the “idea of autistic people having some inherent social deficit about them specifically that needs to be rectified,” he says.

This concept revived his academic drive. Over nearly a decade, Sasson has followed this thread in subsequent studies, digging deeper into how external factors, such as stigma, weigh heavily on the ways autistic people are perceived. In a 2017 paper, for example, Sasson and his team showed that non-autistic people tend to form negative first impressions of autistic people after just a few seconds, based on how they act and sound rather than on their conversational content.

Then, in 2019, Sasson’s team found that non-autistic people prefer interacting with other non-autistic people versus autistic people, and that autistic people tend to share more about themselves when they interact with each other. Preliminary data from the same study also reveal empirical evidence of masking: Some autistic people adapt their behavior to meet the social demands of non-autistic people.

Sasson and his colleagues have even shown that standard measures of social skills fail to accurately predict how well autistic people fare in real conversations. These findings highlight an important gap within the field, Sasson says. “Even though social interaction is core to the diagnosis, autism research really hasn’t studied real social interaction very well.”

It is this kind of work that has won Sasson praise from voices within the neurodiversity movement. “Noah is one of the first and one of the most vigorous and creative researchers” honoring neurodiversity-driven perspectives, says Steve Silberman, author of “NeuroTribes,” the 2015 autism history tour de force. “And not just by saying nice phrases like ‘social model of disability’ or ‘a difference, not a disorder.’ But actually by doing the hard work of quantifying and extending those thoughts into the empirical realm of science.”

For Botha, Sasson’s work is “evidence that, actually, there are some researchers out there who are actually willing to understand autistic people in context, which shouldn’t be as radical as it is.”

These days, Sasson spends most of his time working on manuscripts and texting or emailing with members of his lab. In a given year, he has two doctoral students, a masters student or two and a gaggle of undergraduates. There are always several autistic students.

Danny Dunn, who completed an honors thesis while an undergraduate in Sasson’s lab and today is a masters student at Texas Woman’s University in Denton, says this level of representation would be harder to establish elsewhere, but the University of Texas at Dallas’ campus has a huge autistic student population, possibly formed through an intersection with the university’s LGBTQ+ friendly culture and its propensity to attract “nerds.” Dunn explains, “We don’t have a football team, [but] our chess team is top notch, and our esports team is winning nationals.”

Sasson has fully embedded himself in this community. Not just as a researcher, but as an ally. He serves as a faculty advisor for the student-run For Autistic Empowerment organization, and he is a member of the university’s Neurodiversity Working Group, which works to support the needs of neurodiverse students. And he actually listens to the autistic students in his lab, Dunn says. But Sasson thinks that’s just part of the job. If he is going to study autism, then he has to be comfortable having his work “consumed and critiqued by autistic people,” Sasson says.

His sense of justice extends beyond autism, however. He is working with doctoral student Desi Jones on her upcoming dissertation, exploring the intersection of racial issues and autistic experiences — research Jones doesn’t think she’d be able to do elsewhere. Sasson is also searching for ways to mitigate the double empathy problem. Too often, he says, “all the burden, the whole entire onus, is on autistic people to figure out how neurotypical people work and then basically mask to do that.”

His team has instead focused on non-autistic people through video trainings aimed at increasing their understanding of autistic people — helping to explain stimming, for example. This approach seems to improve non-autistic individuals’ self-reported attitudes about autism and boosts their interest in interacting with autistic people, the researchers found in 2021. That said, the non-autistic people’s implicit biases about autism didn’t budge, suggesting that more internalized attitudes may be harder to shift.

Perhaps the best way to move toward more fruitful connections between autistic and non-autistic people, Sasson thinks, is through the development of long-term relationships. This is something he’d love to test with a longitudinal study someday. “The only things that really seem to break down racial, discriminatory attitudes and things like that,” Sasson says, “is protracted, meaningful interaction with people.”

Cite this article: https://doi.org/10.53053/BBJJ3348