May 14, 2012 0 Share

The High Low Game


Close-up of hand turning over spade royal flush.
iStockphoto

When you have a kid on the autism spectrum, the first thing people often want to know is where he falls on that scale. And while I don’t tend to think of myself as easily offended by language, lately I have found myself getting rubbed the wrong way by a phrase which would probably not cause most people to bat an eye. In fact, I’m sure many parents out there would be grateful to have this describe their children: “High-Functioning”. So why, you may ask, am I feeling bristly over Cameron being described as “high-functioning”?  Well, it’s hard to put into words, but since I get paid the big bucks to put things into words, I shall try. (Note to Editor: “Big Bucks” is a term of irony.)

As best I can tell, “high-functioning” is in the eye of the beholder. There is no official diagnosis of “high-functioning autism” to which diagnosticians refer. Though in my history of looking for support programs and potential schools for Cameron, I have frequently heard Cameron described as “too high-functioning.” I never take that as a complement. Instead I feel almost ashamed for taking up an administrator’s time with Cameron, when clearly there are many students far more deserving of service than he. I fully understand that Cameron’s place in the autism universe is not a bad place to be. There has not been a time when I’ve read one of Caroline McGraw’s columns and I haven’t considered myself lucky to not be facing the same issues her family faces. I fully appreciate and am proud of the fact that Cameron excels at independent living skills. He can budget his monthly allowance and track his bank account. He can go anywhere public transportation will take him relying on no more help than the app on his phone. He independently requests and collects prescription refills. In many ways he is ahead of the vast majority of 17-year-olds. But what about the ways in which he’s not ahead?

Academically speaking, Cameron is the opposite of “high-functioning”. He struggles mightily to read, and even more mightily to comprehend what he has read. For those doing the teaching, it’s very hard to assess just what Cameron knows and what he doesn’t know because of his low frustration tolerance. As a coping mechanism, Cameron has learned to nod and say the right thing to demonstrate understanding, but what he’s really doing is deflecting the attention he gets when he doesn’t understand something. Cameron is a challenge to highly-qualified instructors, and not because of inappropriate outbursts in class or inability to stay in his seat. No, Cameron needs proactive teaching, or he’s just going to go through the motions and gain very little understanding of the subject matter.

So Cameron needs very specialized education. But the kind of education Cameron needs usually goes along with very specialized behavior interventions. And because he doesn’t need the latter, he is labeled “too high-functioning”. Cameron has never fit neatly into a categorical description of a person with a disability. I’m grateful for every skill and strength Cameron has, and there are many. But I struggle mightily, alongside Cameron, finding a way to overcome his challenges. Were I to become a higher-functioning mom, I might even try home schooling. (Did I just put that in writing?)