BEYOND STIGMA

Adults living with autism face daily struggle

MARQUETTE — John Taylor is a 33-year-old writer and advocate; he also faces his own daily struggle.

Taylor is one of the 3.5 million Americans living with Autism Spectrum Disorder, and the social stigma that comes along with it.

“Think about the name for a moment. Autism Spectrum Disorder. the starting assumption is that we are somehow defective, somehow wrong, we are ‘almost’ made in the image of God to pull a metaphor,” Taylor said. “The starting assumption is that there is a problem with us that also unnerves people.”

Taylor said the stigma against those with autism is something similar to the stigma against those who are mentally ill.

“A lot of people tend to treat autism like it’s a superpower. Like the boosted intellectual function or specialization in one area gives you some kind of edge that negates any other difficulty, but it doesn’t,” he said. “I couldn’t tie my own shoes until I was 26. I am on disability because I still can’t work around heat, my wife has to do all the cooking. I can’t drive, and that puts some strain on my familial relations because my father is a mechanic and of course the eldest son can’t take up the family trade because he can’t drive. I can’t ride a bicycle which is fairly huge in Marquette — things that even fourth graders can do with their fingers, I really can’t.”

Taylor said as a child he was bullied in school until his mother removed him from the school district to home school him from fourth grade to 11th grade.

“Because of physical bullying,” Taylor said. “I was beat up on a regular basis, because I was strange to the other children. At the time I entered high school, I was the only autistic student in the entire district. They had no clue what to do with me.”

Because of his high verbal IQ, the district could not put him in a conventional special education class, so they put him into programs geared toward juvenile delinquents, and after continued bullying he opted to drop out halfway through 11th grade and got his diploma via a General Education Development test.

When looking for positive aspects in his life, Taylor said he is hard pressed to find them, considering he struggles with what he calls extremely poor motor skills and the inability to read body language, and sensory difficulties.

“My disability prevents me from succeeding with the supposed ‘upside’ of being autistic,” Taylor said. “There isn’t a great inspirational story here. There doesn’t need to be. Disabled life isn’t ‘inspiration porn’ — it is a daily struggle against a bio-mechanical prison that cannot be escaped — your own body.”

For all the negatives his condition brings him, Taylor tries to be a positive force, educating the public about what autism is and isn’t. He has written articles for Marquette Monthly, serves as vice chair of the group Self Advocates of Michigan and has spoken to Northern Michigan University classes about his condition.

“And one of the things I always get asked, is how vaccines affected my condition. Let me be clear,” Taylor said. “I was on the autism spectrum well before I got my first vaccine.”

Pathways CEO Mary Swift said Pathways helps just over 180 people in the Upper Peninsula on the autism spectrum from ages 2 to 93 years old, but manifestations of the disorder vary from person to person.

“Often times when the general public thinks of a person with autism, the thought is of classic autism features,” Swift said in an email. “However the spectrum of autism is very wide and variable. People may often underestimate the abilities of a person with autism. A person with autism may have significant sensory issues or minor ones; may have cognitive issues or high intelligence, etcetera. At Pathways we believe it is essential to begin working on developing social interactional skills such as eye contact, identifying body language, sustaining conversations, etcetera, so that people are able to more fully participate in the community.”

Taylor said that interacting socially with a person on the autism spectrum requires communication without subtlety, something that may take some getting used to.

“People on the autism spectrum, we do not pick up on body language or facial expression. We can’t always tell by tone of voice if someone is kidding or being sarcastic or serious. We do not pick up on cues that people do or do not want affection. We tend to stare longer,” Taylor said. “People psychologically will be unnerved by that, because behaviors are a reflex that they take for granted, we have to be taught in programs. It does not come naturally or in some cases artificially. We don’t exhibit behaviors they take for granted … to them, I imagine, it’s a bit like having a conversation with a department store mannequin.”

The best way to communicate with someone who has ASD is to be as straight forward as possible, Taylor said.

“I don’t know how much I speak for everyone, but we don’t guess,” Taylor said. “We don’t take the hint, we don’t pick up on subtlety. If there is something we are doing wrong, or even something we are doing well, tell us in as plain language as you can.”

Taylor said although things have improved, the state, country and society have a long way to go.

“There is enough emotional and informational support now, but the advocacy still isn’t there. Because a lot of the people who are passionate enough to be advocates for this are hard core anti-vaxers and they are not really taken seriously in their requests,” Taylor said.

In the end, Taylor said his goal is to reclaim the humanity of people on the autism spectrum.

“The most positive, I would guess that my experiences can help other people on the spectrum,” Taylor said. “That something good can come from my experiences. We’re people, not problems. I want people to believe that. Many (people) don’t yet.”

Lisa Bowers can be reached at 906-228-2500, ext. 242. Her email address is lbowers@miningjournal .net.

Additional articles:

Autism Speaks