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Orangeville man shares journey of adult diagnosis for autism




By Sam Odrowski

An Orangeville man who was recently diagnosed with autism wants to let others know that it's nothing to be ashamed of and he encourages people who feel they may be autistic to get an assessment.

David Vahey, 39, received his diagnosis on Dec. 12 and said he's turning it into a point of pride for his son Solomon, 10, who's also autistic, after decades of feeling ostracized for being different.

Vahey says his autism mostly manifests in social situations, so since getting his diagnosis he's been connected with community-based organizations that will better help him better navigate the disorder. He's planning on attending a class about carrying a conversation since this is something that he and many other autistic people struggle with.

Autism is a developmental disability caused by differences in the brain, which results in problems with social communication, interaction, and restricted or repetitive behaviours or interests. Someone who has autism is neurodiverse so their brain works differently from a neurotypical person, and they may have different ways of communicating, paying attention and interacting with the world.

Vahey's recent journey of becoming diagnosed with autism began when he got his son Solomon assessed and learned he has it.

Shortly thereafter, Vahey was told he should take an educational course through Kerry's Place titled “Introduction to Autism Spectrum Disorder” to better understand his son. When taking the course, he learned what to watch for in terms of signs and symptoms of autism and said he recognized a lot of them in himself.

“I was thinking, I'm supposed to be here listening for my son, and yet my mental checklist is checking all the boxes,” Vahey said. “This person doesn't know me but they're describing my childhood."

After realizing that he shares many of the characteristics an autistic person can have, he reached out to his family doctor who referred him to a psychiatrist. This was ultimately unsuccessful, as the psychiatrist was unqualified for an adult autism diagnosis and he learned doing it privately would cost anywhere from $5,000 to $8,000.

The cost was a barrier, so Vahey did some research and learned that the Centre for Addiction and Mental Health (CAMH) can do a diagnosis free of charge.

After being on a waitlist for a year and a half, he received his diagnosis last month and said it felt like an affirmation. 

“I knew it to be true but there's just something different about having it in writing,” Vahey noted. 

He said people can sometimes be dismissive of individuals who self-diagnose, so he felt it was important to make it official.

The diagnosis itself was done over video call. Health professionals spoke to Vahey for a few hours, asking him a variety of questions relating to social scenarios and other situations. His mother was also interviewed for half an hour and asked a variety of questions about her son.

There are three levels of autism spectrum disorder (ASD) a person can be diagnosed with. Level one is someone who needs low support to get through their lives, level two requires some support but can do everyday tasks and level three is often a person who is non-speaking and needs full-time support. 

Vahey is level one, requiring low support for his autism in daily life, as he works a full-time salaried job, owns a house, and is married with kids. 

“I can manage most things, or at least I pretend I can,” he said. “Pretend is a big part of it. Fake it till you make it.”

His wife Vivian Petho is a strong source of support. Vahey says, “Without her, I would never have become an accidental advocate for autism.”

 

Growing up with autism

Looking back on his childhood, Vahey says only people who required a high level of support for their autism received help and it took until 1999 for this to happen. Parents had to sue the government so they could get supports funded. 

“You had to be not able to function on your own to get any help medically,” Vahey noted.

One of the most commonly known symptoms of autism that Vahey experienced as a child and still does today is stimming, the repetitive performance of particular physical movements or vocalizations. 

For him, it's the wringing of his hands and making laser noises when there's a build-up of excitement that needs to get out and for his son, Solomon, who has autism, it's flapping his arms.

“When I was growing up, literally my own my family and people outside the house would mock you for it, so you learned to suppress it,” said Vahey. ”I still get the sensation, I just don't do the hand movement but I still get, they're almost like spasms, energy spasms – a build-up excitement and it just makes you twitch."

He added, “For me, it feels like energy building up going up the spine and it comes out around the shoulders or head where it's a head twitch or just a quick involuntary movement. Like you have to let the energy out. It's like air in a balloon.”

Vahey always masked his stimming and autism growing up so he could survive at school. This is how he avoided being sent to the “locked room” where all of the students with disabilities were locked in and educated.

“The fear was that they're going to put me in the locked room and I'm not going to be able to play sports, see my friends and learn what everybody else was learning, even though I could do it," he said.

While stimming may draw negative attention in public from people who don't understand why a person might involuntarily flap their arms or twitch, Vahey said as long as the stimming doesn't put his son in danger, he doesn't discourage him from doing it.

One time he got overly excited about the automatic doors at No Frills and began stimming aggressively which almost led him out of the parking lot and onto the road. In these instances or others that may endanger Solomon, the stimming is curbed.

“But if he's watching his favourite show, he's just doing what his body does, what's natural for him,” Vahey noted. “I don't want my son to be ashamed of who he is. That was part of the reason also why I got the diagnosis, that I wanted to turn it into something as a point of pride. Like, look my dad has autism, I have autism, my dad holds down a salary job, drives a reasonably new, nice vehicle."

Vahey told the Citizen when he sets his mind on something – his goals or hyperfixations - he found a way to succeed. 

"I put it on my life and wore it like clothing until it was snug, worn out and raggedy. My way might not be your way, but don't underestimate what we can do," he noted. 

The number of children being diagnosed with autism has raised exponentially over the past few decades. Vahey said it's something he had to hide as a child to avoid being shunned, and so did many others who grew up in the 80s and 90s.

"It was something to be ashamed of, so you did what you had to do and that was that,” he explained.

 

Myths surrounding autism

With medical institutions now treating autism properly, the general public has become better educated on the disorder but there are still many myths that are commonly believed, according to Vahey.

"Don't think because you know one person, you know everybody who has autism and you can put them all in one box,” he stressed.

One of the main myths is that autism is a disease. This is incorrect, it is a disorder, one that cannot be cured.

Another common misconception is that autism is becoming an epidemic. Vahey noted that the rising rates of autism aren't because more people are being born with the disorder, it's that the criteria has gotten a lot better for diagnosis. 

He learned after researching and reading books like "Neurotribes" by Silberman or Grinker's "Nobody's Normal" that more glaring developmental issues were being diagnosed. 

People like Vahey who require low support were able to get by without being diagnosed since it was never apparent from simply looking at them that they had autism. This resulted in autism being underdiagnosed. 

Another myth is that people with autism don't feel emotion, but Vahey says this is the opposite of the truth. If anything, autistic people feel too much, too intensely which leads to stimming and other ways of releasing anexiety or excitement, he explained.

There's also a myth that people can grow out of autism, which is patently false.

“It's not like childhood asthma, I grew out of that,” Vahey said. "Autistic children become autistic adults. We don't grow out of it." 

One more myth is that children with autism are more violent. This is because, with big emotions, autistic people can have large outbursts. Sometimes, amidst a meltdown, an autistic person's senses get overwhelmed and their brain will shut down. This is when violence could happen but it is extremely rare and no more common than when a neurotypical person engages in violence. 

"Meltdowns are very visceral chaotic experiences. They shut us down on the spot. Sensory overloads can storm our heads unexpectedly like rioters attacking Capitol Hill," said Vahey. "I will get snarky with frustration as basic executive functions fail. Then I'll lash out. Saying things I don't mean. I need to kick my frustration to the curb by saying these things. Factory reset the invisible sensory settings. Violence with autism is a defibrillator after the heart attack of a meltdown."

He added, "Often we're suffering from something we might not even know or understand it. This world is not built to accommodate our sensory intolerance. When we lash out, it's not with malice or ill-intent."

A key message Vahey wants to share is for people to take the time to learn about autism and don't be afraid to ask questions. 

As the parent of an autistic child, and having the disorder himself, Vahey is well-researched on the topic and loves educating others.

“Just ask,” he said. “Most parents just want people to learn about it, we want to teach people. Don't be afraid to ask.”

 

 


Post date: 2023-01-23 17:01:59
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