Someone Finally Said It

Awhile back I wrote about how two little numbers and discovering what they meant had brought me down into a pit that had lasted several days. The numbers were 3 and 6, or 36, and that was Ethan's score on the CARS (Child Autism Rating Scale) assessment at his initial evaluation by a developmental pediatrician. It was a number I hadn't dared or had been to scared to look up until this winter, when I learned that a 36 was one point away from scoring in the severe category. Mild autism was considered a 30-33.

Since then I've hated CARS and I've hated 36. Thirty-six tries to scream at me about all Ethan may not be able to accomplish, or how far from his "typical" peers he truly is. Since then I've also had numbers of people tell me they don't think Ethan has severe autism, that it's more on the mild side. Sometimes I've thought they were just being kind; other moments I've believed them. There are days when I ask myself why it all matters so much, that I wonder if I've put some sort of conditions in my mind, like maybe things won't be so bad, if he only has autism "a little bit?" And many times I don't think of it at all, because I can't live with the number 36 marching through my mind. I can't be pulled under water by the findings of a literally one-hour encounter Ethan had with a stranger.

There is this thing out there with autism, though, about high functioning vs. low functioning. I'm not even sure what specifically distinguishes the two camps. Does low functioning mean non-verbal? Is a high functioning child one who is mainstreamed in school? Or relatively independent? Is a low functioning person with autism always the steretypical one rocking in the corner, banging his head, locked in another world?

Even though I can't always quite define why it makes a difference, there has always been a part of me that wanted to hear someone say Ethan was high funtioning. I admit it. I craved the words. Most of his therapists just haven't spoken in such terms. Which has made me wonder: was that because they considered Ethan low functioning, but didn't want to say so? When I met with some of his potential preschool teachers in Windsor, from my descriptions of Ethan, one of the women said in reference to something, "Oh yeah, the high functioning kids are often like that." But they haven't met Ethan yet. We go to a play group with a boy who to me is barely on the spectrum. I look at him and think, "Well, THAT'S high functioning," and feel a bit sad, yet again, not exactly knowing why this matters so much.

Well, on Friday Ethan was at his outpatient OT appointment. Every one of his therapists has commented on how smart Ethan is and how quickly he learns and picks up on things. But this time, as we were talking about insurance coverage for future appointments, Diane said, "Well, out of the kids I see on the spectrum Ethan is definitely on the higher functioning side."

There was a part of me that wanted to yell, "Yes! Finally!" There was a part of me that felt a little relief. And there was another part of me that felt all sorts of mixed up, jumbled feelings. They are the same kinds of feelings I have now when I find myself feeling really proud of Anna for how incredibly smart she is (she picked up reading with almost no help and scored in the 80th and 90th percentile on most of her test scores).

Ethan has made me stop and think. His situation makes me question my values and motives, and to want to make them more pure, more true. I know there is nothing wrong with being incredibly proud of both my kids and their accomplishments. But I never used to think about when I might cross a fine line over to murkier waters...when I don't just take their accomplishments but line them up side by side with their peers'; when I go beyond feeling proud to feeling more...important...more valued, or that my kids have more value, because of their accomplishments.

I feel as if I must always ask the question: what if Ethan had scored a 40, or a 50 on the CARS scale? What if I had heard low functioning rather than high functioning murmured politely, discreetly in my presence? What does it really change? What does it really change?