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Adults with autism face misconceptions, struggle to connect

Children with autism grow up into adults with autism.

They are often overlooked, underemployed, and don’t always receive the same push for inclusion, awareness and acceptance that children with autism get.

Shawn Roney was diagnosed with autism spectrum disorder in his early 40s. He originally received a diagnosis of Asperger’s Syndrome—Asperger’s is placed under the larger umbrella of an ASD diagnosis.

“I was aware that people thought I was different,” Roney said. “I heard comments about being an oddball. ‘Weird’ or ‘strange’ were terms that popped up at times — and I hated them. They’re not descriptions of endearment the way, say, the term ‘quirky’ is.”

Roney explained that his diagnosis of autism wasn’t something that he actively sought; instead, he said, it found him.

“I was in grad school at the University of Kansas, pursuing a Ph.D. in film studies…periodically, I’d visit therapists to discuss problems that I didn’t feel comfortable discussing with the folks in my daily life. It started when I was an undergraduate, and then as a grad student at Warrensburg. I also saw some therapists for a while at UMKC,” he explained.

It had been about eight years since he had talked to a therapist, and he thought he would seek some help with stress management.

“I had wondered if maybe I had a mild case of obsessive compulsive disorder, given my habit of sometimes agonizing over a philosophical question or personal issue for days at a time, sometimes longer — or to use a milder example, checking front doors or car doors several times to make sure they’re locked,” Roney said, but it wasn’t OCD. “The student therapist at KU who was being supervised by Dr. Sarah Kirk, one of my two current therapists, told me I didn’t have obsessive compulsive disorder. He told me I had Asperger’s Syndrome.”

He was, at first, puzzled — he had never heard of Asperger’s. When it was explained that it fell under the diagnosis of autism, Roney said he then felt “devastated.”

“Until recently, there’s been a stigma about autism,” Roney said. “It felt as if someone had given me a scarlet letter A (for autism) to pin on my chest and wear in public. I felt like people would think of me as Rain Man if they knew of the diagnosis. I was in denial about it for a while. I’ve grudgingly come to accept it.”

Adults often lack the support children on the spectrum get. Adults don’t have access to the same resources children do through public school, for example. Many kids with autism receive IEPs (Individual education plans) that include different therapies, including help with social skills, or they qualify for what is called a 504 plan, which gives them accommodations that allow them to access the general education curriculum. Places of employment do not offer access to therapies, and accommodations, if covered under the Americans with Disabilities Act, aren’t always sufficient.

As a freelance journalist, photographer and editor, Roney doesn’t necessarily require accommodations, simply because he is able to work from home and telecommute. He’s a regular contributor to The Richmond News, The Examiner and Dos Mundos.

He’s also a semiprofessional musician and says that the venues he plays in do offer some accommodations in relation to volume.

“I play small venues in the music career and the music isn’t cranked to 11 — forgive the Spinal Tap reference. So, yes, I guess they offer accommodations,” Roney said.

Roney faces challenges as an adult on the spectrum. Like many individuals with an autism diagnosis, personal relationships can be a struggle.

“Relationships have been difficult, especially romantic ones. My dating life has been erratic, and the longest ‘relationship’ I’ve had was a platonic one that existed primarily through written correspondence,” Roney explained. “Trying to chit chat and mingle in social settings is another one — ironic perhaps, given I could be talkative to the point I irritated people as a boy.”

“[Autism] affects my face-to-face interaction with people. I tend to limit that part of my life because I’m more comfortable expressing myself in writing than I am speaking — unless it’s a lecture or speech, but that’s different. It probably causes me to limit what I share about my life with people, too. That, in turn, makes it difficult to know me,” Roney added.

Roney has also faced periods of depression and anxiety. A study from 2017 on autism points out that a larger-than-normal percentage of adults with ASD have also been diagnosed with depression, anxiety and attention deficit hyperactivity disorder. Managing multiple conditions can present even greater challenges.

“Bouts of anxiety and depression have been problems,” Roney said. “Driving has been a challenge, especially in heavy traffic. I probably rant about other drivers more than most people. Or at least I do when no one’s in the vehicle with me.”

Roney would like to see more services for adults with autism.

“Too much of what I’ve found online is for kiddos only,” he explained. “Organizations and institutions act like autism magically ends when you’re 10. It’s damned insulting.”

He would like to see more social groups for adults with ASD. In addition, another service that would be helpful is more transit options.

“At least around Kansas City, where commuter rail is almost non-existent and the bus lines stop at the larger suburbs,” he explained. “That said, mass transportation has its drawbacks. A crowded bus or train — or other place that feels crowded — isn’t where you want to be when you have ASD.”

When asked if there are any misconceptions about adults with ASD, Roney said there are.

“That people with ASD don’t understand or use sarcasm,” he said. “It’s a gross generalization.”

 

By Samantha Kilgore • kimeberely@leaderpress.com

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