He's so functional

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.

Comments

[goodfountain]

I understand just what you are saying here. I often look at my daughter at 3 1/2 and imagine what she'll be like at 5 and 6. Will she have matured beyond where she is now?

This was a really wonderful post that has given me much to think about. Excellent links too.

[Casdok]

Both my son and i have grown and learnt so much through the challenges that we have faced.
The labels have fallen by the wayside as they seem to loose thier importance.
We are both blessed and the gifts are enormous.

[Axinar]

"And so we are back to the eternal question of what is 'quirkiness' (lovable eccentricity) versus 'disorder' (off-putting)."

Probably a little of both.

For instance, being able to pass the bar exam on the first try sometimes tends to throw people off that a person just might have other issues that make it profoundly difficult to do other things.

I look at it this way - God forbid your child would have been in some sort of freak accident shortly after birth and, say, would be paralysed from the waist down or some such for the rest of his days. You'd teach him how to use wheelchairs and other assistive devices to get around.

Similarly, he just may need some extra help in navigating friendships and interviews and many other things "social". You just recognize these things and hope for the best.

At the end of the day your child has strengths and weaknesses like all other children - they just may be balanced a little differently as all.

[kristen]

I relate to so much of this. And I agree with Drama Mama, but day-to-day? I find it hard to hold on to that. I think that's why I blog. To remind myself that it's all okay. That there is good everywhere. That it may be different, but it's not bad. That who he is, is who he is and all of it is what it is supposed to be.

Thanks for a thoughtful post, Susan.

[Special Needs Mama]

I've heard many mention the hazards of "invisible" disabilities. You remind me that every road is hard, so hard. Hang in there. I know there are surprises ahead, but some of them might actually be good. You never know.

[Niksmom]

One day, one year at a time my dear. Isaac is growing in leaps and bounds —in so many ways— that you just can't know what the future will hold. It will unfold as it is meant to —with you and J right there helping to guide Isaac along in all the ways he needs. And you will be there to fight for the things he needs to succeed in school as well.