Date Published: December 1, 2021
We are celebrating SPARK’s fifth anniversary with stories about the first people who joined.
James Williams is a traveler.
Based near Chicago, Williams travels to meetings, conferences, and schools to talk about his life with autism. In fact, he was traveling to an anime convention in Minnesota when he spoke with SPARK about why he became one of the first people to join the SPARK autism study.
The answer is simple, and complicated. He has both autism and medical problems, so he hopes that SPARK will discover how genetic differences affect a person’s physical health. SPARK researchers are analyzing participants’ DNA to find genes that contribute to autism. Participants may also join studies on various topics from depression to special interests.
Williams is interested in treatments and interventions that could help autistic people, along with genetics. “I know critics in my community don’t like genetic theories. I know that some people have that hesitancy. But I’m like, you know what? This [study] could help people. I know that not everything is going to help everyone. But let me be part of something that could at least help someone. Let me be part of research that at least can be beneficial to somebody, somewhere.”
Since Williams joined in 2016, SPARK has enrolled more than 275,000 autistic children and adults, and their family members, across the United States.
Williams, 33, serves on the SPARK Community Advisory Council, among other autism-related advisory boards or committees. He is the author of five books about autism. He authored one book, The Self-Help Guide for Special Kids and Their Parents, with his mother, a book editor, when he was in elementary school. His latest book, which he co-authored with a self-advocate, is about autistic high school students.
He has written or given presentations about many topics related to autism. They include friendship, handwriting, social interactions, empathy, learning, sensory sensitivities, and interests in anime, a form of cartoon animation from Japan.
Anime figures into some of his work. He is a musician – a recorder player – who has performed at anime conventions and also on the YouTube channel, “James as James.” At MetaCon 2021, a comics and science fiction convention, he gave two presentations: “Teaching Disability Awareness thru My Little Pony” and “Autism in the Anime Community.”
In many ways, he has spent his life trying to help non-autistic people better understand the autistic world.
The “Autism Baby Boom”
James Williams was diagnosed at age 3 in 1991, around the beginning of what he calls the “autism baby boom.” Autism diagnoses in children began rising rapidly in the 1990s, and schools scrambled to provide services for what was previously considered a rare condition.
Williams was among the first generation to take advantage of expanded early intervention and services for autism in schools and cities, he says.
But not all teachers were prepared in those early years for autistic students. Williams attended public school some years, and then would be taught at home other years, depending on whether his Individualized Education Plan (IEP) for autism was being followed.
“I was homeschooled half the time and in school half the time,” he explains. “Because autism wasn’t entirely understood then, there wasn’t a lot of enforcement or awareness about IEP needs for autism. The end result, when I was in elementary school, was the luck of the draw, depending on what teacher you got. So one teacher did not support my IEP, and my mom sent me home. Another teacher happily supported my IEP, and I went back to school.”
The Challenges of School
Williams faced other issues at school. Practice emergency drills, when loud alarms signaled that students must quickly go outside, were traumatic. He has sensitive hearing, like many people on the autism spectrum. Williams says that students with noise sensitivities should be told in advance of planned fire drills, so they can prepare themselves.
And he faced bullying because he was different. As a younger child, health problems made it harder for him to play sports. “I was the kid that would get exhausted trying to keep up with the other boys during tag.”
In high school, students and adults alike treated him suspiciously because he had platonic friendships with girls. “We were challenging boundaries that society puts on different-gender friendships,” Williams says.
“A lot of my male peers were tormenting me all the time over my autistic differences,” he recalls. “They were picking on me for not being sexually active the way they supposedly were.”
Williams was not alone. Research shows that students on the autism spectrum are at higher risk of being bullied than others.1
Williams channeled his experiences into efforts to educate others. The boy who used to have a significant speech delay gave his first presentation about autism when he was 11. He and his mother spoke at an autism conference in Florida.
Around that time in childhood, Williams was experiencing a chronic gastrointestinal (GI) problem that his family struggled to get diagnosed and treated. Reports of GI problems in children with autism range from 9 to 70 percent, with autism clinics reporting the higher percentages, according to an article in the journal Pediatrics.2
Medical Problems and Autism
Williams was diagnosed with acid reflex, but that didn’t explain all of his GI problems. Finally, he says, as an adult he got help through a doctor who explained that he could not digest certain food and had an allergic-type response to wheat gluten. Williams hopes that SPARK researchers will explore the medical problems that affect some autistic people, to improve diagnosis and treatment.
Some genes that have been connected to autism also cause GI problems. And some SPARK participants are currently enrolled in a study of GI functioning. The study is being conducted through SPARK’s Research Match program, which connects outside researchers with SPARK participants who want to join their studies.
“What I liked about SPARK was that SPARK was not making a conclusion,” Williams says. “There was another DNA study that I had been notified of that had pre-made a conclusion, that was a theory. What SPARK was saying was, ‘Look, we’re going to collect these samples and follow the data,'” he says.
Currently, about 10 percent of SPARK participants receive a genetic diagnosis from the study. As researchers uncover more genes that contribute to autism, SPARK adds them to its gene list. When that happens, SPARK re-analyzes its data and notifies participants who have a change to a newly-added gene.
So far, Williams has not received any genetic results from SPARK. But that does not concern him. “I didn’t need to get anything. I didn’t want proof. I just wanted to be part of a study that I supported.”
Interested in joining SPARK? Here’s what you should know.
Photo published with permission of James Williams.
See these SPARK articles and webinars to learn more about gastrointestinal issues in autism.