He’s so functional

By Susan Etlinger; originally posted on the blog The Family Room.

In the earliest days of Isaac’s diagnosis, there would be a certain point at which the specialist would stop and say, in a tone meant to comfort us, “but, you know, he’s very high-functioning.”

And I’d glance at J., and he’d look off into the distance for a split-second, and in that moment a whole spectrum of feelings would flit across his face: relief, resignation, hope, fear, irritation. I knew what he was thinking: we’d won the diagnostic equivalent of a consolation prize.

What does it mean?, we’d wonder aloud to each other. We knew what it was supposed to mean: Isaac had [emerging] language. He had [some] eye contact. He didn’t have an awful lot of rigidity, sensory defensiveness or stereotypical behaviors, beyond occasional hand-flapping and a lifetime membership, when excited, in The Ministry of Silly Walks. In short, we were being told, we weren’t that far off Normal.

“So,” we’d wonder aloud, trying to narrow things down a bit, “does that mean you think he’ll be mainstreamed? have friends? live independently? be loved? What are we talking about here?

But they could never answer.

I’ve been thinking about this a lot lately, especially as we draw closer to the Rubicon of Kindergarten and the One-Way Trip to Real School. Where children begin to develop far more sophisticated social barometers: who’s In and who’s Out. Who’s Cool and who’s Weird. And, beyond that, there is homework, and there are expectations, and there are more and more statistical norms, and tests, and expanses of unstructured time when he will have to eat and play and figure out social cues and fend for himself.

And, yeah, I’m scared.

Recently, a friend said to me that she thinks that the really high-functioning kids, the ones who are just slightly different, have the hardest time of it, because as they grow they are met with a constant barrage of expectations that they don’t know how to navigate. I don’t know that I agree with her, especially having seen so many children with autism who struggle simply to stay regulated from one moment to the next. It’s got to be completely physically overwhelming and exhausting.

But what’s more, I don’t even buy into this high-function/low-function business anymore, especially now that I’ve read MOM-NOS’s post on the topic, entitled “The high cost of ‘high function.'” And now that I’ve read Amanda Baggs’ blog:

“Remember that when they attack someone you are not, they are not attacking you. They are just attacking something they think is you, an illusion in their heads.”

Are those the words of someone with “low function?” Hell no. I am writing those words down now because I know that some day in the not-too-distant future, I will need them for Isaac. And for that, I thank Amanda, a thousand times over.

When it comes to the whole “normal” thing, we’ve gotten a bit of a free pass up to this point. After all, a quirky four-year-old is cute. But an older child? An adult? That’s an entirely different proposition. And so we are back to the eternal question of what is “quirkiness” (lovable eccentricity) versus “disorder” (off-putting). It’s a value judgment, plain and simple.

As my beloved Drama Mama has said:

“Many times, when I am down or sad about Miss M’s challenges, I realize that I am looking at her through my lens – what my experiences were, what made me happy – and it does not reconcile because she, blessedly, is her own person. We have to change the expectations and look at things from a new angle. And that, my friends, is her gift to me.”

Drama, thanks for that. And pass the glasses.