Wednesday evening C said to me, “I have autism.”
He said it flatly, without much ado. But, it was the very first time he’d ever used the term, and certainly the first time he’d ever applied it to himself.
I was a bit surprised, but later my wife and I were discussing it, and a lightbulb went off: she had taken C in to be evaluated for a large-scale autism study, and during the five hours they were there the word ‘autism’ was bandied about quite often by the clinicians.
We’re not trying to hide his autism from C, but we’ve been referring to it as ‘ASD.’ We started doing this when it became clear to almost everyone — C included — that he experienced the world a little differently. Giving it a label was a helpful way for us to explain it, and calling it ASD seemed a slightly softer approach for now. The question of when to tell your child they have autism is common and challenging.
The next day, my wife wrote a note to the study lab and asked them if, in the future, they could be a bit more careful about throwing the term around so casually. While we have fully embraced C’s autism, we were hoping to explain it to him in bits and pieces over time, as it seemed appropriate.
“It’s a house I live in.”
As for C, well, when I asked him what he thought autism is, he replied without much hesitation, “It’s a house I live in.”
I think that’s about as apt and beautiful a description as I’ve ever heard.