All posts tagged moog

The Autism Awareness Post

Published April 3, 2012 by April Fox

The handsome young man to your left is my son, Dylan. This photo was taken a couple days ago as he prepared to go out on a call to assist with a bad car accident. I like how he looks here: confident, relaxed, ready to get out there and help someone.

Dylan is a pretty typical 20-year-old kid. He played around with the idea of school and work and when he got bored with North Carolina, he ended up in Florida, by way of Flint, Michigan. It was a spontaneous decision, but it worked out and he landed on his feet. He’s enjoying the Florida sunshine, working full-time and going to school full-time to become a paramedic–the first stop on his way to med school. He’s maintained a high GPA the entire time he’s been enrolled. When he gets a break from work and school, he hangs out with his friends; I hear stories about new tattoos, all-night video game-fests, crazy chicks and the crazy things they do. Somewhere in there he finds time to help tutor other students.

I don’t know a whole lot about what Dylan does in school, but I know it’s a pretty intense program. Yesterday he sent me a text about being covered in blood after helping treat someone. I could tell it bothered him; he’s never liked seeing anyone hurt. He’s had a few potential setbacks, a minor car accident, some unexpected financial glitches, but he’s handled them well, probably far better than I could. He started a whole new life in a place he’d never been, where he knew nobody but his aunt and her kids, and he’d only met them a handful of times. He had to learn to navigate his new city, first on foot and then in the car he bought; there were meetings with school officials and financial aid advisers, job interviews and finding a new group of people to spend time with.

Why am I telling you all this? Why does it matter that my kid is doing all these things?

Because April is Autism Awareness Month, and Dylan has Asperger Syndrome, a form of high-functioning autism.

Myth: People with autism can’t handle any change in routine.

Myth: People with autism are unintelligent.

Myth: People with autism need lifelong care and cannot live on their own.

Myth: People with autism can’t experience empathy or compassion.

Dylan is living proof that all of those are false.

I’ve told you all a little bit about another of my boys, who I refer to here as thing one. Seven years younger than Dylan, he also has Asperger Syndrome, though he’s affected a little differently than Dylan is. A couple years ago, thing one couldn’t tolerate anyone new being in his house. He spent one of his birthday parties huddled in his closet, hiding from the noise, the people, the over-stimulation, while his twin brother enjoyed the day. It was heartbreaking. From there, he progressed to wearing huge sunglasses over his eyeglasses whenever anyone visited or we went out in public. For years, he had to wear a hat 24 hours a day; if I tried to take it off while he slept, he’d stir and clamp his hand on top of his head, holding it there. He’d take it off only in the privacy of the bathroom, to shower, and then it went right back on. When he had to have his hair combed or cut, he sat with his eyes closed, rocking back and forth, until the hat was returned. He wore long sleeves even on the warmest days; photos of him taking swimming lessons show him submerged in the pool, fully clothed in jeans and a long-sleeved oxford shirt. He had an outstanding vocabulary, but wouldn’t talk to anyone he hadn’t known his entire life. He wore industrial earmuffs all the time, because he was so sensitive to any noise above a conversational volume, and any unusually pitched sounds drove him crazy.  Here is a photo of him taken last week. He’s in short sleeves, no hat, no sunglasses, out in a public place (The Moog Store and Factory, which is awesome), smiling, and on top of that, playing the theremin-an instrument that, if you don’t know what you’re doing, produces sounds somewhere between the mooing of a cow, a high-pitched scream, and a spaceship landing.

I don’t mean to downplay the seriousness of autism; the symptoms of autism run on a spectrum, and my boys are on the high end of that. Some kids and adults with autism truly stay locked inside themselves their entire lives, but hopefully more research and awareness of how the disorder works will begin to change that soon. I can’t look at autism as a disease or a disability; my kids simply are who they are. With Dylan-who was misdiagnosed when he was younger and only evaluated for ASD after our developmental pediatrician saw similarities between him and the newly-diagnosed thing one-you wouldn’t know he had Asperger’s unless you know someone else who has it. Thing one comes across as a quirky, unique, kind of nerdy kid: the kind you expect to grow up to be, I dunno, Steve Jobs or something. There are things we need to work on, ways to help them adapt to the world that they’re stuck in, but that’s true for everyone. Nobody falls into life knowing all the rules.

Dylan and thing one aren’t the only people I love who have autism. There’s another young man I love very much who has come a long way in dealing with social situations, but he prefers that I not mention him by name or discuss him here. I have cousins, friends’ children, other family members with varying degrees of autism spectrum disorders, and it’s incredible to hear about the progress they’re making. My friend’s son was diagnosed at two; he’s now reading at age four. There are millions of stories like his, and hearing them and sharing them is what helps promote true awareness.

I’m not asking you to donate money to anything, to post a chain status update on your Facebook page, or to wear a certain color to promote awareness. What I’m asking is that the next time you see someone acting out in public, to try and remember that he may have autism and not be able to deal with all the stimulation. When you encounter a child who doesn’t want to make eye contact, don’t try to force him or assume he’s being rude. When the kid next to you in class rambles on about his favorite subject, don’t discount him as a nerd and turn away; he might have something to teach you someday, and you’d do yourself a favor if you took the time to listen and get to know him.

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