During bible study on Wednesday, as we’re trying to recruit people to come to my presentation on Monday, they had my article sitting out on the table. There was a lot of pointing and smiling and waving in my direction.
Not once, but three times, people came up to me and asked how I knew so much about autism that I could write a book, or what was my degree in that I knew about autism, or did I have a child with autism?
Uh, in case you missed the point of the article… I have autism.
One lady said, “But that’s what kids have.” Yes, yes they do. And then they grow up, and they become adults with autism. Did you think we disintegrated in to thin air on our twenty-first birthdays? Really.
But the other two said what people always say. Always. “You must be very high functioning then.”
I take issue with this for mulitple reasons.
First, I hate functioning labels. They offer little to no information about skills and abilities, and they don’t do much of anything besides pidgeon-hole people’s expectations of us. When you say that a child has “high functioning” autism, people expect that the child really doesn’t have any issues. They expect a high IQ. They don’t expect behavioral issues. They expect clear communication. As we well know, these are not always the case. And then, when we say that a child has low-functioning autism, we expect intellectual disability. We expect diapers. We expect danger and violence. Once again, this is far from true for every child. Stephen Shore told me that functioning labels are “dangerous,” and I happen to agree with him. I would add to that “useless” and “offensive.” Do you want a quick way to describe your child with autism? If that’s what you’re after, try something like, “My daugther, Lydia, has autism. For her that means that she is aloof, not always verbal, and has extreme sensory issues. She’s also an author and an advocate.” Now that gives you a great picture of who I am! Much more informative than “mid-functioning,” isn’t it?
Secondly, I truly am not all that high-functioning! Not to mention that people who have a thirty-second conversation with me are far from qualified to make or offer such opinions. As I’ve said, and as I’m sure I’ll say again, I’m somewhere in the middle of the spectrum, on average. But, I can be almost anywhere at any given moment. I generally appear much more mildly affected when staff is here and much more affected with my mom is around. And then, when alone, well, watch out. I can only put on a face for so much of the time, and then I have to let loose. I don’t know what your definition of high functioning is, but in my mind, it does not include not driving, not working, and needing staff every day. It does not include becoming a hot mess under fluorescent lights after just a few minutes. It doesn’t include being unable to cross the street without help. Just sayin’.
Finally, and what I was after with all this, is that their comments stem from a stereotype. Now, they don’t know it’s a stereotype. All they know is that they’re trying to be complimentary. But really, what they’re saying is, “I have this picture of autism in my mind. I imagine that autistics are (what? ugly? dirty? smelly? not intelligent? rude? silent? loud?). Since you’re not any of those things, you must be very high functioning.” Nevermind the lack of eye contact, nevermind the extreme reaction to light and sound, never mind the staff at my side, never mind humming to myself, nevermind any of it… I don’t fit a stereotype, so I’m not “really” autistic.
I’ve been trying to think of a thirty-second way to say all of this. Oh, and uh, nicely. I don’t blame these people, per se… I just think they’re uninformed or misinformed. I want to change that.
Ideas I’ve gotten are to describe that autism is a spectrum, just like “red” can mean anything from pinkish to bright red to dark red to purplish.
Or, to say thank them and say that I’ve worked extremely hard to appear this way, but that it’s not a true picture of how I usually function.
While I see the benefits in both these ideas, they… don’t feel right. Does anyone have anything else to suggest?
Oh, and in the meantime, I’ll offer you a replacement for if you’re ever tempted to say, “He must be so high functioning!”
Say, “He must be working so hard.”
Say, “You’re doing a great job with him.”
Say, “He’s a great little boy (or girl! I use “him” since so many of us are boys).”
Say, “I love the way he ____.”
Say, “He has so many strengths.”
Say anything. Just don’t say, “He must be so high functioning!”