A few months ago,on another blog, I was talking with other autistic women about functioning labels: high-functioning and low-functioning. Mostly about how much we hate them and why.
Today, a neurotypical woman commented on why we were all wrong about functioning labels. She understands the autistic experience because her fiancee is a high-functioning autistic man whose mother heads an autism charity. Though she really hopes she doesn’t offend anyone, she thinks the labels are good; finds them very helpful in dealing with the autistic kids she encounters when helping out at her future MIL’s charity.
As you might imagine, this was not well-received. A few others replied to her with obvious anger, so I thought I would try to calmly explain to her why her comment was offensive. I tried really super extra hard to keep the anger out of my tone. I’ll let you be the judge of how I did on that front (Hint: I don’t think I did very well at all):
I think I understand what you’re trying to say. Part of the problem is that “low-functioning” is a meaningless and derogatory term. It didn’t actually help you in either of the situations you describe because it didn’t tell you that the first kid didn’t react well to being approached or that the second set of kids would miss the nuances of your political discussion. Therein lies the issue with those two labels. They basically say, “over here are the low-functioning autistics, the ones you need to avoid talking to or aggravating or maybe just avoid period, while, over here, you have the high-functioning group of autistics, aka the good autistics, who are really normal but have some quirks. Don’t we all have quirks?”
Think about your fiancee for a minute. You say you didn’t know he was autistic for several years because he’s high-functioning and you, as a normal person, didn’t notice his issues. Those issues are that he can’t talk to people in shops, can’t pay the bill, has secret panic attacks, and needs time to process information before he replies. Do you think that his panic attacks affect him less than literal thinking affects the kids who can’t pick up nuance in a conversation? How would you label an articulate, brilliant autistic writer who is non-verbal? Or someone who can talk to people and pay restaurant bills, but can’t live alone without support?
High-functioning/low-functioning are labels neurotypical people put on autistic people for their own benefit, not for the benefit of the autistic person they’re discussing without even consulting him/her. I’ve been guilty of it. When my oldest son started school and I told the teacher he was autistic, she frowned and I was quick to add that he’s high-functioning. Meaning that he wouldn’t be any trouble in her class, because that’s what it’s code for. I was afraid she would label him as low-functioning, not realizing I was doing him a disservice. In doing that, I was soothing the teacher instead of helping my child navigate school. Because even though he looks like he’s doing fine, he’s not. Yes, he’s articulate and crazy smart about dinosaurs and history in general, but he can’t make a diorama or write a book report.
We’re all capable in some areas and need varying degrees of support in others. And you can’t tell how much support or in what areas we need it by looking at us. I bet your fiancee doesn’t feel so high-functioning during a panic attack.
As women on the spectrum, most of us are told over and over that we’re not autistic. People who can’t possibly know what goes on inside our bodies and minds tell us that we’re not autistic when what they mean is that we don’t fit into their preconceived notion of what autism looks like, which is based on white, male children. So, your comment, no matter how well-intentioned, hurts us because you’re saying we’re wrong about our experiences as neuro-atypical people.
Basically, you are like a man claiming to know everything about menstrual cycles because you are engaged to a woman who has them. And that we should not take offense at your statements because you’re just trying to explain that it’s helpful for men to know when we’re on the rag so they can patronize us so as to not incur our wrath.
Yes, all of this! As a teacher, the high or low functioning label doesn’t mean much in my experience because it’s very subjective. Does low functioning mean the child can’t participate in class verbally or that s/he needs support during group activities or can’t work independently at all? Since every ability level is distinct to the individual, the label isn’t really anything to hang my hat on, curriculum wise.