One of the questions I am frequently asked is “So where does Maggie fall on the spectrum?” It is a question that is usually asked with kind intentions; its tone is gentle. And it is a question I didn’t know how to answer until recently because none of the usual answers felt right to me.
A lot of the time we hear “high-functioning” and “low-functioning” when describing autistic people. What I realized recently is that I didn’t feel comfortable talking in those terms because the terms themselves are dangerous. You know that some cultures have hundreds of words just for snow, of course. The public, largely uninterested in nuance, has a few words and two categories. Within those two categorical labels of “high-functioning autism” and “low-functioning autism” lies enormous hurt and oversimplification to those to whom these labels are applied.
High-functioning. That’s the one people want to hear from us, because it’s soothing and hopeful-seeming. It’s basically just like being neurotypical except she’ll be quirkily hilarious like that guy from “Big Bang Theory,” right? No. Autism is more complex than a pile of endearing quirks and sound bytes ripe for Internet memes. Before conscious thought can be formed, that pre-set sub-level attitude diminishes the very real challenges people face and very necessary support that people need. They’re drama queens, hypochondriacs, who just need to “try harder.” They don’t need accommodation. They’re just being difficult. And then comes the dismissal.
Worse still is the public’s idea of “low-functioning.” Automatically, you see people’s minds turn to stereotypes and tragedies; never-can never-could won’t-don’t-can’t NEVER pops up like poisonous mushrooms. And then the rub, that great paradox: the idea that people can’t, so why bother? Why bother troubleshooting. They’re just low-functioning, such a pity, ignore what lies within. Don’t bother with assisted communication; forget the idea of living alone or with roommates one day. And then comes the dismissal.
It’s insidious, these ideas. Nobody gets helped, not really. Supports fade away. Unemployment and service cuts loom. Worse still, a hierarchy emerges with “HF” at the top and “LF” at the bottom with no true public understanding of what people actually need or want.There is no room for potential. There is no room for can-should-WILL.
It is a curious and awful experience to be told, in so many words, that because I believe in neurodiversity and do not wish to rewire my daughter’s brain that she must be “high-functioning.” That she doesn’t struggle or work hard to make herself understood, that her anxiety is not real, or that we need not be concerned for her future. She does, and we do, and that would be true no matter what. Her joys and her struggles are as real and valid as any other human being’s, and so is her need for acceptance without condition. All people matter, and everyone has something to say once we find the right way to listen.
So the final answer? “Maggie’s future is very bright.” Because of course it is. And it’s far, far more complex and rich than any ridiculous binary labeling system.