Six months ago, when Adrian and I tried to talk to Martin about his remaining challenges, Martin seemed almost indifferent. If anything, he avoided the topic.
During that conversation, which was designed to highlight Martin’s strengths along with his weaknesses, we discussed what we’re “good at” and “not so good at”—nothing about a diagnosis or giving a name to Martin’s challenges.
Subsequently, in one of our heartfelt bedtime conversations, I decided to offer Martin a more concrete focus. I asked whether he had ever heard of autism. (He thought he had.) Then I said that social situations are difficult because he used to have autism and still is catching up to his peers.
Again I was met by apparent indifference. Martin said, basically, “Oh.” I didn’t push the topic, but since then I’ve used the word “autism” occasionally: We eat a special diet to make sure the autism stays away, we take pills to finish getting rid of the autism, &c.
Martin never followed my lead and talked autism. Until now. Over the past week, Martin seems to have become interested in autism.
He’s asked questions designed to help him understand himself: “Does autism make me interested in adult topics?” Really not sure what he meant by ‘adult topics’! I’m telling myself he meant literature and history . . . . “Does autism make me see things different from other kids?” In these questions, he uses the present tense, as in, how does the fact of autism, regardless of whether it’s the current diagnosis, affect me today?
He’s told me things, for the first time, that confirm suspicions I’ve long held: Even before Martin seemed cognizant of the world around him, he was. We had this conversation:
Martin: “I hate that I’m bad at making friends.”
Me: “I know it’s still hard. Can we think about how it’s getting easier? This school year was so much better than last year. And I bet next year will be even better still. You’ve made progress. When you were little, you wouldn’t even respond to your name.”
Martin: “When I was little, I heard you calling, but I didn’t have the attention to answer.”
I’ve been trying to imagine that anguish. He recognized his name yet had no means to show us.
He’s forced me to impart some elementary biomed theory, as when he asked, “Why was I born with autism?” I responded by attempting to explain that something hurt his wellness system, whether before he was born or after. I referenced his uncles to explain that troubles with wellness systems run in families: Both my older brothers have asthma and environmental allergies, and one also has food allergies and has suffered from chronic bronchitis. These were perhaps the responses that left Martin looking the most quizzical.
Finally, he’s prompted me to reflect on my own feelings. He asked, “Do you think it’s fair that I used to have autism?” I started with honesty: No, I do notthink it’s fair that my son got autism. Then I tried to temper that answer by modeling gratitude. “Can you think of a friend who still has autism?” I wasn’t sure whether he would respond; we’ve never used the word “autism” in reference to any of his friends. But almost immediately, he named a little pal of his who uses “quiet voice,” i.e., whose verbal ability remains limited. I asked whether he thought his friend would like to be able to talk more, like he can now.
Martin said yes, that he thought his friend would like to be able to talk more. I said that I’m thankful for Martin’s hard work and progress.
My boy—whose verbal skills once were limited to echolalia but who, through biomedical intervention, has become able to express himself meaningfully through spoken language—guessed that his friend would also like to acquire spoken language.
For me at least, that answer gives lie to any neurodiversity movement that objects to biomedical interventions aimed at alleviating or eliminating autistic symptoms. In December 2014, I wrote on this blog: “[I]n all my experience communicating and working with other ASD families, I am yet to hear from anyone who regained his/her health biomedically and subsequently says, ‘I wish we hadn’t done this. I prefer being autistic to being neurotypical’.” I wonder if the day is approaching when I can count Martin among those who would never say, “I wish we hadn’t done this.”
That’s Martin. I promise. It is.
Finding My Kid 