‘Why not Utah?’: Inside the world’s largest convention for autistic people, where diagnoses are celebrated

Provo • Tucked away in a business park near the mouth of Provo Canyon, a few hundred people came together this week for a convention where fidget toys abound and over-the-ear, noise-canceling headphones don’t elicit a second glance.

Here, name tags are color-coded to indicate someone’s interests — like animals or anime — and whether or not they want to talk. Sessions include “Networking for the Neurospicy” and “Navigating the Healthcare System and Asking for Accommodations with Confidence,” with several sensory rooms set up if anyone needs a break.

This is AutCon.

It’s the largest annual convention for and by autistic people — an “unconventional convention for unconventional people,” according to Jared Stewart, the event’s co-chair and the program director at ScenicView Academy, a Provo school for autistic and neurodivergent young adults, which hosts the event.

The idea was to create a space where attendees could connect over shared hobbies like video games and music and trade tips for how to get by in a world not built for them, said Stewart, who is autistic.

Most other autism conventions aren’t led by autistic people — and conventions for pop or “nerd” culture, which many attend, aren’t specifically for autistic or neurodivergent people either. In most other spaces, autistic people are the minority.

”But here,” Stewart said, “it’s like coming home to the homeland.”

While Stewart said the convention aims to be apolitical, he acknowledged how politicians and pundits have recently referred to autism — questioning what may cause it, or what may cure it — was on people’s minds Thursday.

Last month, U.S. Health and Human Services Secretary Robert F. Kennedy Jr. called autism an “epidemic” that “destroys families.” His comments came as a new report from the Centers for Disease Control and Prevention found an increase in the prevalence of autism diagnoses. In a news release, his office said it’s looking into the “underlying causes” of autism, which Kennedy has anecdotally attributed to “environmental exposures.”

Kennedy also said that autistic people “will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date. Many of them will never use a toilet unassisted.”

“We have to recognize we are doing this to our children,” Kennedy continued, “and we need to put an end to it.”

He has since said his remarks were meant to describe people with “profound autism,” according to NBC News. But Stewart said the comments “at the very least, were astoundingly uncomfortable.”

Addressing a crowd of about a hundred for before the keynote speech Thursday, Stewart said “it’s been a crazy time to be autistic.”

“Our community has had a lot of scary headlines and a lot of controversial claims,” he said.

“Like autism is caused by vaccines!” an audience member in the front row called out.

“There’s a lot of stigmatizing narratives and disinformation, like the vaccines thing,” Stewart continued. He added that people are “terrified” they could be targeted through a proposed autism ”registry,” which HHS has since said it will not create. There’s also fear federal policy changes could “threaten our way of life.”

But, he said, there’s good news too. As demonstrated by the people in that room that day.

“I hope that in the midst of all this craziness, we’re not looking outside of our community for people to come and save the autistics. We ourselves can be those heroes,” Stewart said. “All of us together can work to reclaim our identities, to tell people this is what autism actually is.”

Utah-based, with national appeal

Attendance has grown each year since the convention started in 2018. This year’s event, Stewart estimates, brought in about 200 “neurospicy” people, including some of their family and friends.

Most, he said, live in Utah, but the event often attracts attendees from across the globe. This year, at least two cast members from Netflix’s “Love on the Spectrum” were expected to attend: Subodh Garg, who was in the crowd Thursday, and Dani Bowman; both had a panel planned Friday.

The event’s growth though is somewhat constrained by its mission. If it gets too big, it could become too overstimulating for some to attend.

It nearly is already, Stewart said.

“Every year, it’s kind of a little miracle that it happens,” he said, “and afterwards, everybody’s like, ‘This was great. It was amazing. Hopefully I’ll have the energy for it next year.’”

So far, each year, they have.

Daniel Driggs learned about the convention through Utah Valley University’s Passages program, a series of courses meant to teach autistic people life skills and strategies to help manage social anxieties or succeed in school.

Thursday marked his fifth year attending AutCon.

“I really like learning how to just live life better, basically, and how to manage autism,” Driggs said, “but I also just like being with everybody and knowing I’m not alone.”

Driggs was diagnosed with autism as an adult, at 23, “after I failed out of college twice but I didn’t know why.”

“Being diagnosed was honestly the best thing. Like, instead of being upset, I’m like, ‘Wow, this is why I’m this way. I’m not just some weirdo or something. There’s a reason I’m like this.”

“And there’s tools,” his mother, Ronda, chimed in.

Driggs later reenrolled at UVU and “aced” his next semester. Now 30, he works full-time as a veterinary technician. If autistic people will never pay taxes, like Kennedy said, Driggs said he wants his money back.

‘There is no epidemic’

Dr. Ingrid Boveda, a licensed psychologist who founded the Utah-based Hive Psychological Services, said there’s several reasons why the CDC found that autism diagnosis rates have increased.

“First of all,” she said during her keynote speech, “there is no epidemic. Autism is not a disease that spreads. It’s not contagious.”

She said psychologists are getting better at testing and listening to people’s experiences. The diagnostic criteria has also changed to include other diagnoses that earlier weren’t considered autism.

“There’s also something to be said about mate selection,” said Boveda, who identifies as neurodivergent.

Autistic people not only go on first dates, contrary to Kennedy’s assertion, but they tend to get into relationships with other autistic people — and have kids with them.

Autism, Boveda said, has a “highly genetic component,” meaning those children are likely to also be autistic.

While autism does provide challenges, and some people need stronger support, a reframing of behavior, and learning scripts for certain interactions — like asking for accommodations — can really help. That’s what AutCon is for.

For the newly diagnosed, the experience can be both gratifying and overwhelming, as panelists attested during a session Thursday.

Kyra Desantos discovered she was autistic three years ago, at 45 — after coming to AutCon as a representative for her former employer, Texas Instruments, a convention sponsor.

Desantos said she often got feedback from colleagues that she was “too blunt and wasn’t tactful.” So she’s been working on that, but she’s also tried explaining to coworkers why she might come across that way.

She doesn’t always say she’s autistic. Instead, she’ll explain, “‘I tend to be really blunt, but it’s because I like efficiency. I have no personal bad feels toward you.’”

“‘If I’m giving you feedback, it’s because, well, we will make more money if we do it right,’” she said. “But I also tell them, ‘I’m really bad at reading your response, and I really do care, so please just be open with me, and if I offended you or this communication method isn’t working, will you please just tell me?’”

She said it made a huge difference.

“I definitely think that autism is the reason I’ve done so well in the careers that I’ve chosen,” Desantos said, “but [the diagnosis] made it a lot easier.”

Desantos said the panels at AutCon, and hearing Stewart in particular, helped her begin putting the pieces together about herself. She realized she’d been trying to operate her life under the wrong set of instructions, like using a “PC owner’s manual for a Mac.”

Her job led her to Provo, to AutCon, and Autcon led to her diagnosis, which led her to the right owner’s manual.

That any of that happened — that AutCon exists and is held in Utah — is simply because there was the will and funds for it here, Stewart said.

“Why not?,” he asked “Why not Utah?”

“There’s great adult services here, compared to a lot of states. We’ve got a long way to go,” Stewart said, “but we had autistic staff. We have an autistic space, and we had people who saw the need.”

He thinks other places may follow their model at some point. They’ve recently been asked to host in Arizona, and AutCon will hold its first Salt Lake City event on Oct. 11.