Doctoral student takes a new approach to research with autistic communities

Most parents of autistic children have experienced moments in public settings, when their children yell, make noises, or behave in ways perceived as distracting by others. Then, in that moment, the parent becomes the target for disparaging stares from a disapproving and often accusatory public.
 
Those stares speak loudly, suggesting the child is flawed or conveying blame for not raising the child the “right way.” Sometimes, the stigma of having an autistic family member casts a shadow of shame, an unfortunate consequence of a judgmental world.
 
That familial shame lies at the heart of Jim Tillett’s research plans.
 
Tillett, a doctoral student studying marriage and family therapy in the Department of Human Development and Family Science in Virginia Tech’s College of Liberal Arts and Human Sciences, plans to de-pathologize how autistic individuals participate in their relationships in the context of therapy. He wants to take what he learns and then turn that into ways to educate those involved in autism care, ultimately hoping to change non-autistic individuals’ attitudes toward their autistic loved ones.
 
“I think that most [parents], especially [those] of any disabled children in this society, feel a tremendous pressure to protect their kids from the onslaught of criticism or rejection they're going to receive from the world,” Tillett said. “I imagine parents want to protect themselves from it, too, because they're going to be criticized for things they do in public.
 
“It’s my hope, in this particularly unique and powerful role interacting with these types of families, to shift the focus away from how we get the kid to get in line with society's expectations to how do we, as a family, push back on society a little bit and make more space in the world for people like my kid.”
 
According to Carolyn Shivers, Tillett’s dissertation advisor and a former faculty member in the Department of Human Development and Family Science now working at Niagara University, Tillett’s research veers from the traditional approach taken by most autism researchers. For years, researchers — who consist mostly of non-autistic people — have defined autism based on the behavior they see and labeled it as a disorder.
 
Yet Shivers said they fail to consider what autistic people feel and experience. Tillett plans to do that, which surprisingly is considered a counterintuitive approach in the world of academia.
 
“Autistic people have been trying to tell us for decades, but we haven't listened because non-autistic people observed autism, labeled it as a disability, and then therefore dismissed anything that autistic people have to say,” Shivers said. “Jim is really at the forefront. It's unfortunate that it's the forefront. We should have been listening a lot longer, but he’s really at the forefront of being an autistic scholar and trying to center autistic people's experiences in a way that the research community and the clinical community is going to accept.”
 

Personal connection to his research

Tillett, who is currently in the proposal stage of his dissertation process, has a personal connection to his research. Several years ago, doctors diagnosed him with ADHD (short for attention deficit hyperactivity disorder, an innate form of neurocognitive functioning typically stigmatized for its patterns of attention spread and levels of activity). While working on his master’s degree in marriage and family therapy at Appalachian State University in Boone, North Carolina, Tillett diagnosed himself as being autistic after an autistic peer told Tillett that he embodied many autistic traits.
 
Tillett read the literature on “autistic camouflage,” or masking the traits of autism. Many adults do this to retain jobs or to survive socially, and Tillett came to self-realize his autistic identity even though many in his profession would glorify formal diagnosis. Yet, diagnosis can be very difficult to access, and diagnosticians disproportionately fail to recognize autistic traits in individuals who are not cisgender white boys from middle- and high-income backgrounds.
 
“Self-diagnosis is extremely stigmatized these days,” Tillett said. “I decided that … it would just be looking for validation from somebody who's wearing a lab coat. Frankly, I'm already in that lab coat. I'm like, ‘If I can't self-diagnose and feel empowered to do that, then who can?’”
 
Tillett’s plans appealed to faculty members at Virginia Tech, which he said came as a surprise to him. He said he wants to challenge modern mental health fields with a particular focus on how autism and other forms of neurodivergence (such as ADHD and dyslexia) are discussed.

Tillett sees people with autism through a different lens, which he relayed to faculty members when interviewing for admission to Virginia Tech.
 
“I use the language ‘disabled’ as opposed to a person with a disability because I don't see, at least myself, being disabled, as something that’s shameful or that I want to distance my identity from,” he said. “I see it as part of who I am. It’s society that’s disabling me.
 
“Our world isn't built to accommodate my brain, in particular, but it could be, so I think that thinking about it that way is very different from how mental health thinks about neurocognitive functioning right now. I was a little surprised that anyone in the field was ready to hear these things.”
 
Tillett also is physically disabled and chronically ill. Years ago, doctors diagnosed him with Ehlers-Danlos Syndrome Hypermobility Type, a connective tissue disorder that affects the body’s joints and can result in chronic pain and gastrointestinal issues. On the most difficult days, Tillett struggles to eat, walk, or even transition from standing up to sitting down.
 
His experiences have led him to advocate for disabled communities in general, and not just autistic people. He said he views ableism as an ignored social justice issue. In late September, Virginia Tech administrators brought Judith Heumann, a lifelong disability rights advocate, to campus for a panel discussion. Heumann, who contracted polio as a toddler and uses a wheelchair, has played an active role in securing legislation to protect disability rights and served in special roles during the presidencies of both Bill Clinton and Barack Obama.
 
“We often ask the family member of the disabled person to speak with us about what living around that disability is like, or we ask other experts who diagnose it to talk about it, but we don't just talk to disabled people,” Tillett said. “To have her here as an expert on her own experience in itself is pretty amazing.”

Taking his cause to the classroom

Virginia Tech requires many of its doctoral candidates to teach undergraduate courses, and Tillett is teaching an online Intro to Disabilities course this semester. His course is required for students wishing to obtain a disabilities studies minor, part of Virginia Tech’s Pathways General Education that allows students to integrate their learning across multiple disciplines.
 
According to Shivers, the incongruence between Tillett’s views on disabled people and classroom experiences with ableism make teaching this course a challenge for him.
 
“As an autistic person, as a multiply disabled person, he is being confronted with the oppressive and marginalizing beliefs that these students are bringing,” Shivers said. “It's what society teaches us about how disability is bad, and we should cure disability, et cetera, et cetera. This isn't students being awful on purpose. It’s what they’ve learned.
 
“But Jim is being presented the message that he shouldn't exist, that he should be different than who he is as a person. That's a much more mentally and emotionally challenging task.”
 
Tillett, though, uses the course to challenge students to examine long-held traditional views of disabled people. He said many disabled and/or chronically ill students take his course mainly by nature of the interest, but non-disabled students interested in neuroscience or psychology also are taking the course and even some in architecture who are interested in accessible architecture design.
 
“My hope is, by the end of the class, it shifts them to being curious to talk to actually disabled people, listening to their narratives, and how they think about their own lives and beginning to sort of blur or destabilize that boundary between disabled and non-disabled, or supposedly able-bodied people,” Tillett said.
 
“There's a lot to unlearn.”

Future uncertain

Tillett hopes to complete his research by the time he graduates in 2024 and then continue work in critical autism studies once he finishes his dissertation and completes his doctoral requirements.
 
He just knows that connecting people in authentic ways and supporting them to negotiate through boundaries is a noble pursuit, regardless of where he someday lands.
 
“Ultimately, it’s about making the world more inclusive for how people flow through it and not just in terms of how they relate to one another, as you would focus on in family therapy, but to also how they move in their bodies,” Tillett said. “Some people stim and/or they rock, or they swivel around in their chair a lot like I do. That's just how they need to occupy space.
 
“It's OK to be in our bodies in the ways that feel most comfortable to us and to show up in society looking like that. The world will go on, and we'll all be OK.”
 
Shivers thinks Tillett’s research ultimately could have a bigger impact than even he imagines.
 
“I hope his research leads to an entire set of programs and theories that are ultimately taught in every marriage and family therapy program, in every counseling program, and in every class on autism,” she said. “I hope Jim's research becomes a foundation of how people are taught about what autism is and what autistic people are.”

By Jimmy Robertson