The Autism Label

Image credit: Photo by Meredith_Farmer on Flickr Licensed under Creative Commons

When my son was two, he was not speaking, and our pediatrician gave us a series of referrals to begin the process of having him "evaluated." Since speech delays can be caused by hearing loss, we made a trip to the nearest children's hospital, the only place in our area with facilities and equipment for testing the hearing of non-verbal children. We filled out reams of paperwork about my pregnancy and his development up to that point: Were there any complications during pregnancy? What was his APGAR score at birth? When did he first sit up? crawl? walk? wave? Austen sat on my lap in a special room with mechanical toys that would light up and move if you looked toward a sound. I tried not to move and cue him to the beeps I heard or the sound of the examiner calling his name.

When (as we had expected) no problem was found with his hearing, we spent hours filling out reams more paperwork with all of the same questions (and more) all over again on new forms. A psychologist interviewed me by phone about Austen's behavior. "Does he make eye contact?" she asked, "Does he engage in any repetitive activities? Does he bang his head?" And I seethed with anger. I knew where she was going with this; she hadn't even met him and already she was trying to stuff him in a box and slap the autism label on him. How could that label possibly fit? It left out so much about who he was.

After the phone interview, we took Austen in to meet a team of evaluators. Mark and I sat in a hard plastic chairs in a room full of toys, watching psychologists and therapists ask Austen to play with the right toys the right way and point at the proper pictures. It was grueling. They were all very nice and friendly, and they seemed genuinely entranced with our son's cuteness, but it was their job, not to focus on his strengths, but on what he couldn't do: to measure his deficiencies and stamp him "defective, needs repair." I looked at him playing and saw Austen being Austen; they looked at him playing and saw something wrong with him.

I tried to silently will him the answers. "Come on, kid. These people think there's something wrong with you, show them they're wrong." And time after time, he'd just completely ignore the question. I'd watch them mark their papers; another strike against him. "I know he knows what a ball is," I'd plead, as if all his future happiness and mine were riding on him knowing that and on them knowing that he knew. "We have to score this based on what he answers," they'd say.

I knew he was not doing what typical kids were. I knew that whatever we were doing alone didn't seem to be enough to help him navigate the world. Yet here I was pleading with the examiners to give him the good score that would disqualify us from help, because if he got a bad score, they would slap on that label they were dying to stick to him: autistic. Then no one would see my beautiful son Austen anymore, they'd see "the autistic kid" and everything about him would be interpreted through that lens.

And I could see the label distorting the perceptions of the evaluators already. When Austen entered a large open space and spun around until he fell down (something he does much less frequently than I did as a child), the evaluator said, "Oh, lots of kids on the spectrum spin like that." (Lots of neurotypical kids do too.) When Austen walked into a new room and stood on tip toes, craning his neck and inching forward to see a train (his obsessive interest at the time) on a shelf high up in the room, an evaluator said, "Ah, he toe walks." (He doesn't. Ironically, he was displaying a different autistic trait: doggedly pursuing his specific interest.)

What if, years down the line, his kindergarten teacher or his fourth grade teacher or his high school gym teacher his saw "autistic" in his file? Wouldn't they do the same? Misinterpret his behavior? Not see him for all he is? Not see him as an individual? Not help him learn all he needs to know? Because autistic sums it all up. Game over. Case closed.

It was around this time that a friend of mine, whose son is also on the autism spectrum said gently, "You know, the label doesn't change anything. It just allows you to get Austen access to help he needs. He is still the same beautiful child you love. Nothing about him is different."

"But," I protested, internally, "The way the world sees him will be different." It took me a while to see that he is different, and the world is going to see him that way no matter what I do. It's not like his teachers and peers don't notice that he's eaten the same thing for lunch every day for three straight years. It's not like they haven't noticed his literal thinking and obsessive rituals or his distinctive speech patterns and intonation. There will always be labels and labels will always be limiting. If I didn't choose a label for him, the world would anyway, and the world tends not to be kind in its labeling. I could choose to let others decide he was "stupid" or "bratty" or "disobedient" or "a freak" -- or I could accept and advocate for "autistic." The world may throw those labels at him anyway, but at least we have a label of our own, however imperfect, to act as a starting point for understanding.