Friday, April 29, 2011

AAAAAHHHHHH (Cindy N. Ariel, Ph.D.)

This was the main vocalization offered by my stepson Tariq for many years. He still often vocalizes in this way and we sometimes affectionately joke that Tariq has AAAAHHHHHtism, or that he is AAAAHHHHHtistic.

As long as we’ve worked with people on the autism spectrum there have been people who have a hard time with 'the A word.'

Then there’s the more recent problem of how to refer to someone diagnosed with autism.

Are they autistic? Many people, including many autistic people feel strongly that they are. Today I heard Ari Ne’eman speak about this. Mr. Ne’eman founded the Autistic Self Advocacy Network (ASAN) and was appointed to the National Council on Disability by President Obama in 2009. In Ari's view, he is not someone with Judaism or someone with an American background or someone with male genitalia; he’s a Jewish American guy. In fact, he’s an autistic Jewish American guy. And he’s a lucky one because he embraces all of these special aspects of himself.

Or, are they a person with autism? There are many people who feel strongly that autism does not define a person. Just as we don’t call someone a heart diseased individual, or a broken armed man they say we shouldn’t define someone as an autistic person, but rather a person with autism. A person should not be defined by diagnosis or disability; they are a person first, and they happen to have autism.

When the person-first movement began, I was criticized when I wrote something that was not in person-first language. I spent years rewriting and rethinking so that I write and speak in “person-first” language. But Ari’s point is well taken too. Autism, especially for high functioning individuals is not something scary or negative; it’s a way of being with a lot of cool advantages.

I do fear that this issue can be divisive in the community. We can refer to someone as blonde or as a person with blonde hair. A near-sighted person is also a person who wears glasses; a clinically depressed person has depression. These are just facts. If you are proud of your autism and define yourself or your child that way – that’s great for you. I wish it could be that way for everyone.

But I can’t judge you if you or someone you love are heavily impacted or impaired by autism and you have difficulty embracing it. Perhaps it acts as more of a disability for you in your life - is it wrong to not want to be defined by the diagnosis that inhibits you? Or to have your child defined in this way? In our family, we sometimes say that Tariq is autistic, sometimes that he has autism, and sometimes he’s AAAAHHHHtistic or has AAAAHHHHHtism. None of this speaks to our feelings for him or our wishes for his opportunities and happiness.

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