The Question

If I think Sasha will enjoy a particular book, I never suggest she read it. I leave it lying around. Not until it has gathered an air of familiarity will she pick it up. One book I left lying around was ASPERGER'S SYNDROME, THE UNIVERSE AND EVERYTHING. In it, ten-year-old KENNETH HALL describes his life, the "jammie days" when he lounges around the house, books he likes, his singular devotion to grated Red Leicester cheese, his problems controlling his temper and being around other people, the behavior modification program his mother uses with him, how he came to be homeschooled and to pass England's math achievements six years early. A simple book, really, but it was like a window into my daughter. Sasha, like Kenneth Hall, has been diagnosed with Asperger's Syndrome, which in the most simplistic of terms means high functioning autism, high intelligence and verbal ability coupled with low social skills and a low sensory threshold.

When Sasha found the book, she devoured it. She particularly liked the notion of "jammie days," an activity to which we already subscribed. A few days after reading the book, Sasha, then age seven, asked, "Do I have Asperger's Syndrome?"

I paused. For me, the jury was still out on that question. As with most kids with special needs, my child's constellation of idiosyncracies fall sloppily inside and outside of all the boxes of possible diagnoses. I started to say, "You have some features of...," then stopped, caught up in the ambiguities I was constantly mulling over in my mind. No, I thought. She needs an answer. "Yes," I said, "you have Asperger's Syndrome."

"I'm so relieved," Sasha said.

"Relieved?" I asked, unsure if I was.

"Yes. I always knew I thought differently than other people. I like that I'm special. Like Kenneth Hall is special too."

For the next few months, while I expected Sasha to struggle with this new information, she felt she had gained a new understanding of herself. Some expressed disapproval that I would tell Sasha this about herself at such a young age. And I had my own concerns.

I worried she would tell the world she had Asperger's. And she did. She revealed this personal matter indiscriminately, without consideration for how others might regard her (or her parents)--or for the potency of her words. Asperger's. Autism. Both words set my scalp ringing when I was first told they might have a bearing on my family. It is only through a rigorous re-education that I have begun to dismantle the negative wallop those words packed for me. How was Sasha to understand that, while she had no more choice in having Asperger's than a diabetic does about having diabetes, the world did not yet comprehend this? She would be judged, excluded, dismissed, pitied.I worried that she would use Asperger's as an excuse to back out of situations that overwhelmed her. And she did. She told the gym teacher that Asperger's was the reason she couldn't participate in gym. Which got her sent to the principal's office for insolence. In truth, it was a valid excuse, but because of her Asperger's she could not articulate that the noise and fast pace of the gym class quite literally overloaded her nervous system, basically causing her to short-circuit--in this case, by prancing back and forth along the sidelines and whistling frantically to block out the external chaos.

While I worried about how her new-found identity would affect her self-esteem, Sasha was helping me come to terms with her Asperger's, continually pointing out to me the wonderful gifts and qualities that go along with having AS. It is good to think and feel differently than others and not be overly concerned about others' opinions, to be bright and curious, unaccepting of established modes of thought and behavior. My concerns aside, "Asperger's" gave Sasha a name for what she perceived, but could not express, about how she differed from her peers.

While society spends much time addressing the negatives of labelling (that is, seeing a person only for one aspect of him/herself), non-labelling, denying or not acknowledging an aspect of a person, is equally dangerous. If I shunned the word "Asperger's" Sasha might conclude, If no one wants to say what I am, I must be bad. An infinitely more sinister problem to overcome than labelling is shame--internal labelling (of the negative kind). Despite the ambiguities of Sasha's diagnosis, assuming (for the time being) that it is correct, frees us, me and her both, from the confusing sea of possibilities we, all of us, become mired in when something is not right, something, in fact, is very wrong, but we don't know what it is. Diagnosis gives us a way out of the confusion, an approach to try.

A year and a half after Sasha asked her question, she has only a rudimentary understanding of what Asperger's means. For that matter, so do I. It may be that, in time, this name will not fit her, or not well enough. But doesn't every child--every person, for that matter--grapple with such questions? Identity is a fluid, organically-developing thing. Titles like artist, mother, friend, activist are lenses through which to view ourselves, locate ourselves in the world. We also, sometimes unconsciously, define ourselves in other ways: sensitive, middle child, night owl, asthmatic, victim. Even labels with negative connotations can serve positive purposes: to judge or understand, to initiate change (hopefully for the better), self-acceptance. Achieving any of these ends, especially the last, self-acceptance, is impossible without first recognizing a facet of ourselves and putting a name to it.

"The Question" appears as "Katie's Question" in the anthology, Voices from the Spectrum: Parents, Grandparents, Siblings, People with Autism, and Professionals Share Their Wisdom, Edited by Cindy N. Ariel and Robert A. Naseef (Jessica Kingsley Publishers, 2006)