To Say or Not To Say..."Autism"

Henry has been away since Thursday and I gave the nanny the weekend off. It’s just been Adam and I. I like these times although they keep me busy – morning to evening uninterrupted by “intervention.” This morning I took Adam to get his haircut at Melonheads.

We arrive early in the morning, vanilla soy latte and breakfast cookie with blueberries in-hand. Typically, I would just grab the latest book that caught Adam’s eye and let him flip through it as I placed him in a Thomas-The-Train seat. Usually, he would just flip happily through the book, letting Sherry, his regular hair-cutter, talk to him sweetly, cutting his hair gently and quickly. We discover that Sherry has unfortunately left Melonheads to pursue greener pastures. After I place Adam in the train seat, he wants nothing to do with Curious George – a book of Opposites. He is much more interested in the streams of other children coming in, the bins of toy cars ready for his plucking. It is a busy morning and instead of the usual attention, Adam waits a fairly long time until a crusty Asian woman with long scissors just starts going at Adam’s hair from behind. No introduction – no sweetness that one would expect of a children’s hair-cutting salon. Needless to say Adam leaps into my arms screaming bloody murder. Other parents stare and in a flash AUTISM is about to roll off my tongue ...but I manage to hold my breath.

“It’s okay,” I whisper calmly in Adam’s ear while he holds on to me tightly, trying to get out of the train, scissors still swiping off uneven clumps of hair. “You’re just getting your hair cut. You will be okay.”

What would AUTISM have meant to this gruff woman who didn’t seem to care except to get her next customer and tip? Besides, wouldn’t any child have reacted to a stranger putting them in a headlock with a razor next to their ear? Even if I’d said that he gets “scarred easily,” or is “sensitive,” would she have cared?

Adam manages to seat himself back in the chair, even though he continues to cry. In about five minutes, the ordeal is over and we grab a lemon lollipop from a clear bin by the cash.

I think all morning of when, how, and if to use the word autism at all – when it might stigmatize, marginalize, and remain meaningless except to possibly suggest that Adam is “not normal” -- something I do not wish to convey. I even struggle to use it now with persons in the know, who may be able to help him -- not because I am ashamed of the word or that Adam is autistic, but because it doesn’t mean the same thing to every person, and every person with autism is not the same.

As this thought agitates me, Adam carefully works on the same lollipop I gave him at the salon for about thirty minutes as we drive to pick up shoes to match the new Strenesse suit I will wear when I shake President Clinton’s hand tomorrow night (my birthday is on the horizon so a new suit seemed in order). I shuffle him to music class, the French boutique an irresistible reprieve.

Music class is a challenge today. We arrive a little early from the efficacious shopping spree and Adam has a chance to move around while eating pizza Goldfish and drinking water. At the beginning of the class, Adam is visibly distraught. He is resisting control these days and doesn't like being pulled into circle by the music teacher. I decide this week to give him more choices over personal things like food, since he is also being toilet trained and has a couple of new therapists in his life. I figure he needs to also feel in control of his Personhood as I reflect on the week’s “No, No, No, NO’s!” that have bellowed out of him. Ah, I am grateful for those. I waited a long time for them. Nonetheless, I am a little beat from power struggles and decide that he needs my empathy and support. I step in, acting as Adam’s shadow. He has missed a few classes – a trip to Florida, sick with the croup the weekend before that. We missed instrument and boat-making, so in fact, we have missed a lot -- without my support today, and he is like a boat without a mast.

Today we sail on a pretend ship, looking at pretend things on the pretend ocean. Adam enjoys the pretend waves as we rock to and fro. This “pretending” is tough, needless to say, but by the end of the class, between some successes – of moving and imitating and listening attentively to various sounds – Adam ends the session with a smile.

Pretend. Ugh. How does one explain to another who doesn’t understand autism that it’s hard for him to understand what he cannot see? What’s the point? It’s just a weekend music class – we’ll practice at home. There are parts of the class that he truly enjoys and I don’t want him to miss out on that.

When Adam was first diagnosed, I was urged by another mother of an autistic adolescent to get a Disabled Parking Permit. She said she used hers all the time. I couldn’t do it. Adam is not physically disabled. He did not have meltdowns at the mall. Although I am entitled to get one, and was tempted by the ability to park anywhere I wanted, I didn’t want that on my conscience – there are people who physically need to use that spot.

Autism still means so many different things to different people. I sometimes have trouble using the word now because it doesn’t have any ONE true meaning for most people. Just like Adam’s pretend ocean –it is difficult to understand what you cannot see. Adam doesn’t really look any different, although he may sometimes act a little differently, and even that is difficult to discriminate. PreRainman Autism talks about things like this all the time, before the “age of autism,” before the time when everything has to be symptomatic of something.

I have been considering this week that the autistic community just might change the face of the disability rights altogether – for the better. There is a unique opportunity here for the vocal, articulate people with autism to communicate autistic experience in a society that barely tolerates difference. Then again, I wonder if we just might come full circle.