Monday, October 20, 2008

There Is No Schmautism About Autism

My son Ethan has autism, but it's not obvious to people who don't know much about the disorder. I inwardly cringe when I try to explain to folks how autism makes my son have a difficult time staying focused on a task, become hyperactive, and, when he is in social situations, act super silly. Those traits make him sound more like a brat than someone with a disability.

When I read this excerpt from comedian Denis Leary's upcoming book, Why We Suck, all my worst fears about people's perceptions of Ethan were confirmed. Here is the excerpt, from a chapter in the book titled "Autism-Schautism":

"There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . To get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both."

All I can say is, I wish it were that simple, Denis. I would give anything for Ethan's lifelong disability to be a figment of my imagination.

The fact that Leary devoted a whole chapter in his book to autism shows how this disorder has confused and scared so many people. One reason for the confusion is that autism has gone from a specific disorder to a "spectrum" disorder. When my brother was diagnosed with autism in the 1970's, it was a fairly rare disability. Only about one in 1,500 kids were diagnosed with autism then, and those kids usually ended up in a mental hospital for the rest of their lives. That's what happened to my 33-year-old brother: he can't speak, he needs 24/7 supervision, and spends his days in an adult day care facility.

Then by the 1990's the rate of kids being diagnosed with autism skyrocketed to 1 in 150 kids.
That's a pretty scary leap in statistics. How do you explain it? Obviously, autism runs in my family, so I can confidently say genetics plays a role.

Another reason for the increased rate is that doctors began to expand the definition of autism to include kids that are "higher functioning." These kids have normal intelligence and a fairly good command of language, but still have the core deficits that make up autism, which are impaired reciprocal social interaction, impaired communication, and restricted, repetitive behaviors, interests and activities.

I didn't buy the spectrum argument when Ethan was first diagnosed. I went to the evaluation thinking he wouldn't be diagnosed because he didn't remind me of my brother. I was shocked to hear that yes, in fact, Ethan and my brother do have the same disability, but they are on different points of the spectrum. I didn't want autism to be a "spectrum" disorder because I did not want that label for my son.

Now I'm very grateful that doctors have expanded the definition of autism because it has provided Ethan with access to services--speech therapy, occupational therapy, behavioral therapy--that he otherwise probably wouldn't have gotten. These services have helped Ethan flourish. When he first started occupational therapy, he didn't have the fine motor skills to hold a pencil. Now he draws and colors pictures of dinosaurs, his special interest.

More importantly, these services have boosted Ethan's confidence. When a children's book author and illustrator visited Ethan's school last week, Ethan introduced himself as a "fellow artist," and asked him about certain drawing techniques. If I had taken Denis Leary's parenting advice, Ethan wouldn't have any self-esteem and would probably end up a school troublemaker instead of a budding artist.

As disgusting as it is that Leary is trying to make a buck by ridiculing disabled children, it is giving the autism community an opportunity to speak up and educate folks about this complicated disorder. Better understanding will only make it easier for kids with autism to thrive and become productive members of society. Isn't that what all parents, including Leary, want?


StatMom said...

Well said! I have similar issues with my daughter. She has a diagnosis of autism (we suspect Asperger's, that's still up for debate) and people are willing to comment on her oddities in behavior, but when I say autism they look at me like I'm out of my head. "But she acts so normal!" people say. Great, but it belittles how much work and effort we have to go through just to function. My son is more obviously disabled, since he barely speaks. The problem there is that people assume he is intellectually slow, and they speak to him slow and loud - which annoys him and causes him to start humming and tuning them out. He's actually exceptionally bright. Perceptions sure do cause a lot of issues for us as parents, don't they?

I really like your blog, very well-written and insightful. I'll be back :)

jennie said...

Leary is a moron. There is a world of difference between a brat and someone who has Autism. Why do people need to be so effing hurtful toward children??!!! Grrr.

MaryAnn Ashley said...

Leary is clearly an idot! You've done a great job laying it all out & helping others understand the disability. Autism runs in my family too & I've had serval students diagnosed & undiagnosed while teaching kindergarten/first grade. Leary - Schmeary!

Cookie said...

Wow! That is shocking.
My sister used to be a special ed teacher for k-3rd grades. I got to meet her kids a few times and wow! That is tough to handle sometimes and so precious other times.

Anonymous said...

It's so easy to throw comments such as his out into the world, not knowing firsthand what hell autism is. My son only has SPD, and some days it's nearly the end of me. Leary is a moron, and I hope someday he learns it firsthand.

Kathleen said...

What an idiot, I can't believe someone would make a comment like that. The leap in stats are very scary. You do such a great job with Ethan please remember that. I can't imagine how hard it must be each day but we all admire and respect the hard work you have put in and i know one day he will too.

LceeL said...

Our youngest son is an Asbergers boy. He was diagnosed in the 5th grade, which allowed us to get him into speech therapy and a group thing where he interacted with others with a similar diagnosis. Today, he is a Senior in High School, in the top 10% in his school, and has just been accepted at college with a scholarship that will pay half his tuition. He still needs 'guidance', but his mother and I have learned many lessons along the way, lessons, apparently, skipped by Mr. Leary.

Wayfaring Wanderer said...

What a jacka**, that must have hurt you deeply to read. I'm so proud to have read your poignant response to his extremely hurtful and demeaning take on autism.

I'm with MaryAnn......Leary - Schmeary!!

bernthis said...

Ignorance. Pure ignorance combined with the willingness to say/do anything for a laugh : not a good combo