In the name of autism awareness

Last week, Joe’s high school Student Council raised $2,000 and donated it to our local autism support group. I wanted to do my part to raise awareness, so I created a presentation board to display at the event.

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In my effort to show the things an autistic person might do, I didn’t really show what Finn might do. As parents and advocates, we try to spread awareness in the name of autism. But simply getting the word out there isn’t enough. Autism is still so mysterious. Even the “puzzle piece” symbol brings an aura of mystique. Is anything more puzzling than, well, a puzzle piece?

It got me thinking…

Autism awareness month is less than two weeks away; what can I do to make autism seem less confusing? How can I ease the fears of parents with newly diagnosed children? Even if I only help one other mom (like my friend whose son was recently diagnosed), then maybe she wouldn’t have to cry herself to sleep wondering what autism means to her boy. Maybe she wouldn’t feel so devastated by the diagnosis.

As the parent of a child with autism, I (and many others) feel a great responsibility to educate people about our children’s differences, so that someday those differences don’t feel so, well, different.

The problem, however, is that our children’s differences ARE so vastly different. They say, “When you’ve met one person with autism, you’ve met one person with autism.”

How do I explain what autism is like, when all I know for sure is what I see in Finn? I could tell you about our autism, but then you’d think every kid with autism is crazy-good at math and likes to call shampoo bottles “Mooks.”

Autism Speaks does “Light it up Blue” to increase autism awareness, and that’s great. I mean they’re lighting up Christ the Redeemer and the Empire State Building, for goodness’ sake. But statistical awareness of autism is only a small step toward understanding.

Autism Speaks also has a “Learn the signs of autism” campaign, but it doesn’t tell people what the signs are. Unless, of course, you go to their website and then you are completely and thoroughly overwhelmed!

The CDC has a “Learn the Signs. Act Early” campaign, too. But, what does “knowing the signs of autism” do to educate a nation of people struggling to understand autism in the wake of the Sandy Hook tragedy?

If we want people to understand what autism is, then we have to start showing them the PEOPLE, not just the statistics.

There are so, so many misconceptions about autism. “Autistic people lack empathy…don’t look you in the eye… don’t like to hug… aren’t affectionate.. speak in a robotic affect… cover their ears… have savant-like talents… are obsessed with watching moving parts… can’t read facial expressions… have no imagination… like to watch ‘The People’s Court.'” (I was kidding on that one.)

I could go on and on. Do some autistic people do some of those things? Yes, but not all! There is no one thing that all autistic people do. Autism is as diverse as humanity itself.

Therein lies the problem.

In our best efforts to tell others what autism looks like, we speak of its “symptoms” or “characteristics.” These symptoms are really the manifestations of other conditions inside the autism spectrum and vary so greatly from person to person. Just within sensory processing disorder alone, the symptoms can vary so widely. Some people with autism are sensitive to loud noises, some to bright light, some like to touch things, some hate it, some are clumsy and have poor body awareness. So, to say, “People with autism cover their ears,” is only true if that person is sensitive to sound. It doesn’t mean that person doesn’t have autism, and it doesn’t mean that all people with autism are sensitive to sound.

The same is true for so many of the “typical” things autistic people do. But I worry for the parent researching to see if her child has (oh no, the dreaded) autism. She sees that her child doesn’t do those things, checks it off her list and moves on. Her child remains undiagnosed for another six months or a year or forever. And that mother trudges on trying to fit a square peg into a round hole.

Finn clinging to Charlie on the first day of school.

Finn clinging to Charlie on the first day of school.

When we were first grappling with Finn’s new diagnosis, I wrote a blog post (for my then, personal, family-only blog) in which I said, “Instead of donning an ‘Autism Speaks’ puzzle bumper sticker, I want one that says ‘Don’t stare and give me parenting advice when you see my tantruming child!'” I didn’t feel that the autism portrayed by the diagnosis or the media or in my preconceived mind, was my child.

In the years since, I’ve come to realize that a lot of other parents feel that way, too. So many different things contribute to what “autism looks like” on each child. Not everything Finn does is because of his autism. Some things are purely Finn originals. He is not a walking, talking billboard for autism anymore than I am the spokesperson for all Irish redheads.

In the short two years since Finn’s high functioning autism diagnosis, I have done what I can to spread awareness. I started this blog for one, which is probably (and hopefully) the widest reach I could have. On a smaller scale, I go into the boys’ school in April, and I volunteer my knowledge of autism. Usually, that involves reading to Charlie’s class, wearing my “I love someone with autism” button and providing literature to other teachers.

It doesn’t feel like enough, though.

So, here we are staring down the barrel of another “Autism Awareness month,” and what do I do? Do I tell people “know the signs of autism” even though when Finn was one year old, I would have never “caught” the red flags? Do I tell people about “common symptoms of autism” even though it is a misnomer? How is that helping you understand my child’s autism? I am painting a picture of autism that he doesn’t even personify. I’ve come to realize that none of us thinks our child personifies autism. Autism doesn’t “belong” to any one type of person or set of characteristics.

I can’t just tell you Finn’s characteristics and hope that you’ll see them in another person and think, “Perhaps I should be more understanding  because this person might have autism.” I can tell you this, “Be more understanding to those who appear different. Be more understanding to those who appear ‘normal,’ but act different. Just be more understanding.”

And here’s what I wish you knew about our autism:

His autism doesn’t make our lives awful.

It doesn’t make him weird or scary.

It isn’t a diagnosis damning him to a life of solitude.

It isn’t a statistic.

It isn’t a pandemic.

It isn’t something to be cured.

He isn’t waiting to be “unlocked.”

He is a little boy who is a million and one different things. And ONE of them happens to be autistic.

He has the capacity to learn and grow and change and make mistakes just like any other human being. He is not trapped inside his diagnosis. He will surpass your expectations. He will defy what you think you know about autism.

He will move mountains one day. You wait and see.

Meet Finn2

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11 thoughts on “In the name of autism awareness

  1. Shann, Another amazing piece. I think that after Finn gets to be around the age of my nephew Jim, you should put all of your blogs in a published book…pieces of Finn and everything you have went and gone through, to help other parents – give them hope. I actually like that title “Pieces of Finn”. Anyway, the signs and symptoms are never the same. I am proud to say that my nephew Jimmy who thought he wanted to be a priest, has found his true calling. After graduation with A’s and B’s from Camden Catholic this June, he will be focusing his life on being a Chef at ACC. Amazing. He is super talented and maybe one day he will be the first Chef-testant on Top Chef. That would be a crowning achievement for someone “in the spectrum”…Jeez it would be for ANYONE. It’s funny because he was diagnosed like 8 or 9 years ago or something like that. I guess we all forget because be has become “normal” like he never was? He always was. Like the beauty of ALL children, we embrace differences. After all, if every child was the same, then life would be so dull. He is going to prom and wearing a cap and gown and a class ring…just like all of the other teenagers. He has a part time job AND he drives a car. Pretty amazing. So regardless of the mildness or severity or in-between…life is truly beautiful. Luv ya Shannie-poo! Xoxx Bernie

    Sent from my iPhone

  2. Thiiiiiis. I’ve been trying to write pieces of this post, but can’t figure out how to do it w/o offending my mom, who is shouting from the rooftops that she’s proud of her autistic grandson.

    Makes me sad b/c I wish she’d stop defining him by his diagnosis. *sigh*

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