When Rachel Leonard’s parents would take her to run errands as a kid, they laid out the game plan: “We’re going to the bank, we’re going to the gas station, we’re going to the store.”

But when they switched up the order — say, bank, then store, then gas station — Leonard felt panic set in.

“I was like, ‘No, that’s not what you told me. This is the way it is.’”

When a psychologist told Leonard’s parents that she most likely had “level 1 autism,” meltdowns like that made more sense.

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Now, Leonard is 26 years old, studying applied communication and autism at Utah Valley University. She says she still feels triggered by change.

“It really does feel like it’s the end of the world,” she said. “And it just feels like everything’s out of control and you’re just trying to survive and you can’t anymore.”

The difference now is that she’s developed coping mechanisms to use in moments like these. If there’s an unexpected change at work, she can usually take a moment to step away and calm herself down.

“What can I feel? What can I see? What can I smell? What can I hear?” she asks herself. By bringing her attention to her physical surroundings, Leonard can ground herself back in reality.

This is a coping strategy she learned through the Personal Empowerment Program at UVU’s Melisa Nellesen Center for Autism. The center provides services to support autistic individuals in their early adulthood.

Leonard said she feels extremely lucky to be at UVU because, unfortunately, resources like this are few and far between.

Rachel Leonard, who has autism, takes notes as adjunct professor Jared Stewart teaches during the Passages Program class at the Melisa Nellesen Center for Autism at Utah Valley University in Orem on April 3, 2023. | Ryan Sun, Deseret News

The autism ‘services cliff’

A common misunderstanding about autism, Leonard said, is that it’s a childhood disorder. “For some reason, people forget that we live with this for the rest of our lives.”

Although autism continues into adulthood, many of the supports available to the autistic population do not. In fact, the drop-off of resources that occurs when autistic individuals turn 22 is referred to in the professional world as the “services cliff.”

Jane Carlson, the director of The Melisa Nellesen Center for Autism at UVU, says Utah is not immune to this service cliff, despite having a higher autism rate than most of the U.S.

“We have a lot of work to do here. We don’t have a very robust array of services for adults,” Carlson said.

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Much of this has to do with lack of funding, education and training, according to Joe Nawalaneic, a behavior analyst at the Adult Autism Center of Lifelong Learning. The Adult Autism Center is one of the only places in Utah that serves people who are nonspeaking with low adaptive skills, and its long waitlist speaks to the lack of services.

“For that population, once they reach adulthood and age out of the school system, they’re hospitalized or they’re at home with their parents, who are then likely forced to quit their job to stay home and take care of them,” Nawalaneic said.

Even autistic adults who are more independent often have trouble accessing services to help them navigate the challenges of adulthood. Many autistic adults struggle to find housing, according to Carlson, and around 85% are either unemployed or underemployed.

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Fish Vosnos, who has autism and is pursuing a degree in autism studies, walks through campus at Utah Valley University in Orem on Tuesday, March 28, 2023. | Kristin Murphy, Deseret News

Resources for autistic adults in Utah

Despite the major gap in resources, autistic adults in Utah do have some options. At the Adult Autism Center of Lifetime Learning, adults with intellectual and developmental disabilities have access to ABA therapy and day programs to help them develop life skills and social connection.

In addition to coping strategies, The Melisa Nellesen Center for Autism’s Personal Empowerment Program provides a series of classes and social activities that help attendees set and accomplish academic, career-related, social and emotional goals. The center also has an Educational Coaching Program, through which peer mentors help autistic students achieve academic success.

“So managing the Canvas system, time management, navigating conversations with your professor if you’re having an issue, navigating working on group activities or doing a presentation, how to break up large assignments into smaller manageable units,” Carlson said.

UVU also offers a three-year postsecondary education program called Wolverines Elevated that helps adults with intellectual disabilities find jobs in the community and live independently. Fish Vosnos, a 23-year-old Wolverines Elevated student, has been able to work through the anxiety of student life with the program’s one-on-one support.

“They sit down with me and really talk to me about how I can best approach a situation,” Vosnos said.

Natalie Buerger, Clinical Director of the Autism Spectrum Disorder Clinic at the Huntsman Mental Health Institute, recommends that autistic adults explore the Autistic Self Advocacy Network, which pushes for disability rights and makes sure autistic people are included in conversations about autism. Organizations like this — along with an abundance of support groups to be found on Facebook and other social media — help autistic individuals find community and know that they’re not alone.

Vosnos said meeting peer mentors who also had disabilities through Wolverines Elevated has been essential to finding his own self-acceptance.

“They taught me that (autism) can be a positive thing, which gave me power,” Vosnos said.

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Fish Vosnos, who has autism and is pursuing a degree in autism studies, talks with his classmates during an English 1005, rhetorics and literacies across communities, class at Utah Valley University in Orem on Tuesday, March 28, 2023. | Kristin Murphy, Deseret News

It’s a neurotypical’s world

The challenges neurodiverse individuals face as adults are not simply a result of their autism — a major part of the problem is being misunderstood or overlooked by non-autistic people.

“I think a lot of the world around us is made by and for neurotypical people,” Buerger said. “And I think what neurotypical people can do better is they can generally feel confident that their perception of the social norms around them matches everyone else’s. But for autistic people, it doesn’t work that way.”

Take employment, for example. When an autistic person enters the workplace, they may be fully capable of excelling at the job, but they’re expected to conform to a slew of unwritten rules that may feel completely unnatural to them. This might lead them to avoid socializing or prefer to eat lunch away from their co-workers because they feel overstimulated.

“Some people might assume that they’re being standoffish and not being a team player, but really what they are needing is a break,” Buerger said.

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The solution to this problem is referred to in the autism community as “double empathy,” or the idea that smooth communication and understanding between autistics and neurotypicals requires an equal effort from both parties.

That means employers and co-workers adapting to autistic employees’ needs in addition to autistic employees adapting to theirs. If an autistic job applicant is unable to participate in an interview, for instance, Nawalaneic suggests that the employer should consider letting them demonstrate the skills required for the job instead.

Part of double empathy is allowing autistic people to speak for themselves. In Leonard’s experience, the best way to support an autistic individual is to simply ask them what they need.

“Just get to know the person before anything else,” Leonard said. “That’s what I would say to neurotypicals.”

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