A Different Kind of Different

I read the introduction of "Be Different" and I'm really excited. I can't wait to give it to Owen to read...the only thing nagging at me is how to explain Asperger's syndrome vs. autism (because John Elder Robison has Asperger's and writes specifically about Asperger's.) The simplest explanation is that Asperger's is the highest functioning end of the autism spectrum.

What trips me up is that Owen seems to be at the highest functioning end of the spectrum and yet he's been diagnosed with the broadest term "autism." This is supposedly due to the fact that when he was little he displayed echolalia, the condition common among kids with ASD where they repeat what you say rather than actually coming up with their own words (this only lasted until he was maybe 3). It's considered a speech disorder and, to my best understanding, kids with Asperger's don't have speech disorders, which means Owen gets put in the autism category.

According to Wikipedia: "The amount of overlap between high-functioning autism (HFA) and Asperger syndrome is disputed. Some researchers argue that the two are distinct diagnostic entities, others argue that they are indistinguishable."

The science in this area just still isn't altogether scientific...and the process of diagnosing autism is still very subjective. It's the combination of observation (usually by a doctor who has only known the child for a short time) and information provided by the parents. I can tell you that I did not enjoy the pressure of trying to accurately remember every milestone he did or did not reach from birth to age 3...especially considering I had twins.

Does it really matter whether Owen technically has autism or Asperger's? In the grand scheme of things, probably not - I'm well aware that the label has nothing to do with who he is as a person. But it matters to me in terms of helping him understand what exactly is so different about is brain. And, honestly, telling people your kid has Asperger's tends to be different than telling them he has autism (I've done both) - people tend to associate Asperger's with socially awkward geniuses, which is far less scary to the general public than "autism" which, unfortunately, a lot of people still don't understand.

I can't really blame people for being confused about autism since the spectrum is so broad. There's still that old picture of the child who can't speak and bangs his head against the wall or has violent outburts - and this is reality for some kids at the far end of the spectrum - but there are a million variations in between that picture and, say, Albert Einstein (whom many now think had Asperger's). There are all kinds of developmental delays, communication challenges and, most commonly, social issues that affect people with ASD.

There's no blanket approach to kids with autism because every single one is going to have his or her own quirks, issues, and gifts. Unfortunately, our world likes blanket approaches. Our public school system is built on a blanket approach to education. And corporate America is still pretty much built on a blanket approach to success. But with 1 in every 110 people in America now diagnosed with some form of autism, we're going to have to find another way.

Sorry, I went off on a tangent there. We were talking about Owen. My sweet, brilliant, funny little Owen. Whose traits I identify much more closely with Asperger's than classic autism...I don't know if there's a good solution to that dilemma. I'm guessing that as he gets older, it will become clearer and he'll be able to decide for himself what he wants to tell people. In the meantime, I can just keep being honest with him.