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Two Americas: Adults living with autism reflect on daily challenges

patrina dixon
Posted at 10:00 AM, Nov 18, 2021

KANSAS CITY, Mo — Autism spectrum disorder (ASD) affects about one in 54 children today. According to the Centers for Disease Control and Prevention (CDC), it is a developmental disability that can cause social, communication and behavioral challenges.

Autism is often called an “invisible disability” as those on the spectrum may not always show any outward characteristics. Instead, the disorder affects how the brain processes and perceives information. Patrina Dixon, a high-functioning woman with autism in her 40s, explained what it is like to be on the spectrum.

“It's like, maybe everybody has a book that they’ve read, and everybody has decided this is how it is. Maybe I didn't get that book, or I lost that book or I didn't read that book,” Dixon said. “It's like an inner dialogue. ‘Hmm, if everybody is laughing, am I supposed to be laughing too? How funny is this?’”

Dixon also lives with attention deficit disorder (ADD). She said she struggled for decades without a proper diagnosis.

In a morbidity and mortality weekly report by the CDC, experts found a number of non-white children with autism were not being identified. Prevalence was much lower among Hispanic and non-Hispanic Black children.

According to an issue of Psychiatria Polska, an expert at the University of Rzeszow found that females with autism are often underdiagnosed and misdiagnosed. This can lead to anxiety, depression, eating disorders and thoughts of suicide during adolescence.

“In addition to being a mom who is on the spectrum, who is also African American, it’s just another challenge,” Dixon said. “I hope they try and they want to understand.”

In fact, much of what experts know about ASD today is based on research done on males. Health experts say they have seen that high-functioning women on the spectrum tend to hide their social confusion and sensory struggles. They call it “camouflaging.” Dixon often finds communication and perception to be difficult.

“Yes, I am exhausted a lot,” Dixon said.

Despite her own challenges, Dixon is fighting to break down one of the biggest hurdles for the autism community: employment and pay.

“It is legal to pay a person with a developmental difference, such as autism, less than minimum wage,” Executive Director of Summit Future Foundation Cassidi Jobe said.

She said it is a federal mandate in the Fair Labor Act.

Despite making less money, lifetime costs for autistic people with intellectual disability are $1 million more than autistic people without intellectual disability, according to a 2016 report by JAMA Pediatrics.

Jobe said change starts with intention and desire for companies to change.

"Believe that person. Believe in their capabilities, in their ability to adapt, and invest in the time that it takes to advocate for their future,” she said. “It is reaching out for help and finding different ways to support that person within the workforce.”

According to the most recent data by the Institute for Community Inclusion, 76% of working-age people with no disability had jobs in 2018, while only 37% of disabled people were employed.

One mother, Afrika Walker, saw firsthand how these numbers affected her son, Jaelyn, who is on the spectrum. She said employers often take the “one size fits all” approach.

“It's hard. It’s hurtful,” Walker said. “A lot of times people will kind of put limitations on your child and that's hard, because you never want to say what they can’t do."

She said she wants employers to create job descriptions that are suitable for people with disabilities, and that she believes big changes can come with small steps.

It is a sentiment aide Jenny Swisher can attest to. She had been working with John Hughes, a 32-year-old man on the spectrum, for about eight months.

“It's been inspiring more than anything,” Swisher said.

Hughes is a living testament people on the spectrum can live full, independent lives. He is holding down two jobs, lives with a roommate and takes care of his pet cat, Ashley.

Swisher said routine is key.

“One little thing that’s off in their morning routine can, in a way, throw off their whole day. That leaves them feeling very unsettled,” Swisher said.

Hughes said those challenges are nothing he cannot overcome. He hopes to become a chef in the future.

“Just because you have a disability of some sort, don’t let that stop you from doing the stuff that you want to do,” he said.

Hughes said he hopes more people will learn about the disability movement in schools and that he wants to see the city council enact laws to make it happen.

“Autistic people are… just people like you,” Hughes said.

There is currently no cure for ASD. Experts are still working to find out what causes ASD by understanding the factors that make a person more likely to develop it. The CDC is currently working on one of the largest U.S. studies to date, Study to Explore Early Development, that looks at possible risk factors for autism.