Jason and I binge-watched Atypical on Netflix a few weeks back (and if you haven't checked it out yet, GO NOW DO, it's wonderful). I could probably write a dozen blog posts on all the many, many thoughts and feels I have about this show (which I repeat, is wonderful), but for now I'm going to go off and ramble down a completely different tangent. HOWEVER, the fact that we watched it will be important later.
(Now THAT's how you structure a coherent blog post, folks.)
Back when Noah was officially diagnosed with ADHD, we teamed up with his doctor and therapist to talk Noah through his diagnosis, what it meant and what would happen next. We didn't take the decision to try medication lightly, and I certainly had no intention of just handing him a pill, like here, take this, without thoroughly explaining what it would do and what potential pros and cons we'd need him to self-report going forward. There was a book and several sit-downs and lots and lots of follow-ups and check-ins.
And then his Autism Spectrum Disorder diagnosis happened. In kind of a short order.
And...well, we didn't tell him.
That sounds horrrrrrrible, I know. But look. the situation's a lot more nuanced than that! It felt like a lot, coming so soon after the ADHD thing. (Which, despite everything we did to keep the discussions cheery and positive, still resulted in a fair share of "what's WRONG with me" and "WHY am I like this" and "I'm going to be a brain scientist when I grow up so I can open my head up and remove all the ADHD from my brain" comments.) We felt leery of slapping yet another label on his still-developing sense of self.
Plus. without medication or any real, noticeable change going on, it just didn't carry the same urgency...or positive spin of "and now that we know, we know how to fix it." I asked doctors, current and past therapists, teachers and even the actual real-life Asperger Experts (seriously. recognized them at a marketing conference and straight-up scammed as much free advice as I possibly could in a 15 -minute conversation). Should we tell him? And if so, when? And how?
Everybody had the same answer: It depends.
It depends on the kid, on the level of impact, on their own capability of understanding. Would it help or empower them to know, or would it feed further into a sense that there's something "wrong" with them? Like all things autism, it's not exactly black or white. It's...you know...a spectrum. Badum hiss.
And so we personally decided to wait to tell him. I don't really know what, exactly, we were waiting for -- maybe he'd ask us the perfect lead-in question? Maybe one day his doctor would simply announce that IT IS NOW TIME. TELL THE CHILD! Maybe a "How To Talk To Your Child About ASD" brochure would randomly arrive on our doorstep, delivered by a small animated woodland creature?
None of that happened. But then Atypical did.
(Therrrrrrre it is!)
I don't want to get into spoiler territory, but one scene in particular nagged at me. Sam (who is on the spectrum) is hassled by kids at his high school. Words like "weirdo" and "retard" get tossed around, and he takes it all in fairly passively, and it's clear this isn't a unique experience for him. The show covers a lot of ground in terms of what it's like to be a parent/sibling/friend to someone on the spectrum, the muddy lines between advocating and sheltering and a whole host of other issues, but what I appreciated most is that while Sam might not react socially/verbally to name-calling or casual cruelty the way a "typical" kid might, there is no doubt that the words are penetrating his emotional core just as deeply. You feel for him because the whole myth/misconception that "autistic people don't have feelings" has already been laid bare as a heaping pile of shit. Of course he has feelings. He has all the feelings. He feels everything in the world -- from the sound of a lawnmower to the sting of rejection -- turned up to 11.
Say something, I thought, while watching that scene.
But then: But what would he even say? What should he say? What are the right words?
As the credits rolled on the final episode. I turned to Jason and said, "We need to talk to Noah."
And if, like magic, Noah was there. He'd crept out of bed to tell us something SUPER IMPORTANT about his latest video game obsession, like probably a list of all the subtle differences between the Alpha 4 and Beta 3 versions and how he's figured out how to glitch into a closet and get a second crowbar or ahhhhhhhhhhyiyiyiyi okay buddy that's great.
"So Noah," I said. "Have you ever heard the word 'autism' before?"
Jason opened his mouth to interrupt me, because oh, shit, NOW? Really? Just like that? I knew exactly what he was thinking, because it's exactly what I've spent the last THREE YEARS thinking about: There are books! We should get a book! Maybe all the books! Then we can decide what book or make a list of talking points or get some advice on the Internet or at least wait until his next doctor appointment!
We can't just...start talking about it. Can we?
We did. I'm not sure where the words came from, but there they were. The right words. at the right time, for the right kid.
He nodded, he asked a few questions, he made some incredibly self-aware connections all on his own to his sensory issues and some other quirks. There's nothing wrong with any of it, or him. It's just different. And being different isn't a bad thing, at all, ever.
It was a pretty amazing conversation, in the end.
A week later, we were at the beach. Noah was stressing out about going in the water because a few years ago his skin got chapped from his wet bathing suit and shirt. We'd come armed with a host of solutions (diving/compression trunks under his suit, sunscreen instead of a swim shirt, a variety of ointments and powders back at the house. etc.) but he was struggling to manage his anxiety.
His brothers were, in a well-meaning but not-super-patient way, trying to get him to stop obsessing and chill out about it. They've gotten chapped before, it's not THAT BAD, what's your problem? It's just the beach! It's fun!
"It's different for me," Noah snapped back without missing a beat. "I just feel things differently than you. I feel things more than you."
And there they were. The right words, at the right time, from one perfectly all-right kid.