6: What’s in a Label?

6: What’s in a Label?

From Chicken Soup for the Soul: Raising Kids on the Spectrum

What’s in a Label?

I see autism as having many different strands. All of these strands are beautiful . . . if you try and take away the autism by removing the strands you also take away parts of the child . . . they are what makes them who they are.

~J.M. Worgan

On the way to school this morning I was finally asked the question for which I’ve been preparing for years: “Mom, what’s autism?”

I answered with a question of my own: “How do you know that term, honey?”

“I saw it on that paper. It said I had it.”

Damn! I’m usually painstakingly careful about keeping any ASD-related information out of my nine-year-old son’s sight. But then I thought back to last week and remembered the report with his assessment strewn across the kitchen table, carelessly left out for not even ten minutes and forgotten in the daily distraction of sorting through school-related paperwork.

I should have known he would spot it. No detail, no matter how tiny or seemingly insignificant, ever escapes his notice. This is a boy who, by age five, could tell you the make, model and year of any oncoming car, just by glancing at its headlights.

Now, he waited patiently for my answer, seemingly unconcerned as he studied the toy car in his hands. And I believe he wasn’t concerned at all . . . just mildly curious. This word, this label, being yet another small detail to file away in his constantly humming brain.

But to me, it wasn’t just a small detail. It was a life-altering diagnosis, a sentence to a lifetime of extraordinary challenges . . . and to me, as his mother, it embodied all manner of fears for his wellbeing, and threats against his happiness.

My son is on the autism spectrum, at a high enough level of functioning that he could potentially integrate completely into society but for a few communicative and behavioral quirks. These quirks, many of which I find incredibly endearing (his mature vocabulary, which makes him sound like a baby-faced professor, how he interjects completely unrelated snippets of obscure trivia into conversation, how he pumps his arms when he’s excited) and others, not so much (the explosive tantrums and panic-fueled meltdowns) are all part of the Simon that I know and love, but may not be viewed as tolerantly by those who don’t know him. Even worse, they might not see him at all, but only that word — autism — and use that label in ways that will define and limit and isolate him. My son is so much more than a label. And I wanted desperately for the whole world, and especially for him, to know that.

I knew the day would come when he would either realize he was somehow different from other kids, or he would overhear something to make him realize he has this thing, this condition that contributes to his uniqueness. And I both looked forward to — and dreaded — the day we would have that first conversation about it. I looked forward to it because I hated hiding his autism in the first place. Hiding implies shame or embarrassment . . . and that couldn’t be further from the truth about how I feel. I am inexpressibly proud of how he handles his daily challenges with such perseverance and honesty. But I wanted to delay the burden of this knowledge until I felt he was ready to handle it. Not that autism itself is necessarily a burden; the burden is the weight of people’s ignorance and intolerance towards anything or anyone outside of what’s “normal.”

And I dreaded this talk because of the sheer weight of its significance. In a few crucial moments, I would have the power to either reinforce everything I’d tried so hard to instill in him (tolerance of others’ differences, empathy, and the three “selfs”: self-confidence, self-respect, self-esteem), or, if I didn’t handle it in just the right way, leave him with the alienating feeling that being different means being inadequate or defective.

So I rehearsed potential conversations in my head endlessly, and talked to other moms of autistic children about how they handled that particular turning point. And still I felt ill prepared to guide him into that moment of self-awareness, utterly afraid of messing it up . . . of messing him up.

So, how did I end up answering his question?

“Well, honey . . . it just means that your brain is wired a little differently from some other people. So you might not always think or see or feel the same way as others. It means you’re unique . . . and very special. Do you understand?”

A pause . . . and a rapid hammering in my chest . . .

And then, “Yes.” He spun the wheels on his toy car. He seemed content.

I asked him if he had any questions or concerns about what I just told him. “No.” I encouraged him to come to me at any time in the future if he wants to talk about it further. “Okay, Mom.” And then, “Did you know that the Bugatti Veyron has 1200 HP and can reach 267 mph?”

And just like that, the conversation was over . . . at least for that day.

And as I continued to watch in the rearview mirror, he resumed playing with his car, humming softly to himself. I was filled with a certainty that reached deep down into my bones . . . he would be just fine.

~Jennifer Doelle Young

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