4:43pm August 21, 2014

➸ The Autism Crisis: Are you high or low functioning? Examples from autism research

In autism research, autistics’ level of functioning is most often judged according to scores on specific tests of IQ (e.g., Wechsler) or developmental level (Mullen, Bayley, sometimes the Vineland) at a specific time.

The reported threshold dividing “high” from “low” functioning ranges from 50 to 90–at least in papers I’ve read so far; the actual range might be even greater. Those are IQ or IQ-type scores with a mean of 100 and a standard deviation of 15. So the threshold, the line dividing “high” from “low” functioning in autism research, is almost three SDs wide. Fall into that impressive span, and you may be high or you may be low functioning, depending on who you ask.

If 90 is the threshold, then about 25% of the entire population (autistic, nonautistic, everyone) is low-functioning. If the more common threshold of 85 is chosen, then about 16% of everyone is low-functioning.

70 is the threshold often considered to be standard even if in reality, if you read the literature, the threshold varies dramatically. But there are different tests and within commonly-used tests there are different ways to set a threshold, even when the threshold is numerically set at 70.

So basically, if you measure low functioning as below 90, I’m low functioning. If you measure low functioning as below 85, I’m still low functioning. If you measure low functioning as below 70, I’m high functioning. This is as based on my last IQ test when I was 22 years old, I don’t know what it would be now.

Weirdly enough, there are even apparently criteria where my 15-year-old IQ, in the ‘superior’ range, would be low functioning. Kanner apparently used something like 140 or 150 as the cutoff for high functioning. So by Kanner’s standards, I only would’ve been high functioning at the age of six. Ever since the age of 15, I would have been low functioning.

By other standards, I would have been high functioning until the age of 22, at which point I became low functioning.

And by other standards, I would have been high functioning until the age of 22, at which point I became either high or mid functioning depending on whether there’s a mid-functioning buffer zone over that 70 IQ number (which often there is).

So by most IQ-based standards, I’m mid or low functioning.

This does not mean I accept these standards. But people who go “You can’t possibly call yourself low functioning” apparently don’t know what they’re talking about. Because my IQ is 85 and that’s definitely in the low-functioning range as used by some researchers, and mid-functioning or just barely high-functioning as used by others.

So… while I still completely reject functioning labels, I’m getting a little sick of the idea that I just made up this idea that people think of me as low-functioning. I didn’t make it up. I didn’t create it. I didn’t do anything to convince people I was low-functioning. The first time I was described as low-functioning, I didn’t even know anyone was describing me that way, I was a 15-year-old sometimes-verbal teenager who had just gotten out of my first year of college with mostly-decent grades and had an IQ of 120. And yet I was described, on paper, in writing, as low functioning, and in a way that made it look like mid-functioning was people’s ultimate dream for me.

Interestingly, my functioning level on that chart was the exact inverse of how I was feeling: The worse I felt, the higher functioning I was. The better I felt, the lower functioning I was. That says a lot about functioning labels and how people use them. The chart was actually a graph that showed my functioning level over time, from the age of 14.75 to the age of 15.5, approximately.

I noticed that in general in that psychiatrist’s notes, I was described as higher functioning or “doing better” the more I conformed to his plans for my life. Like he wanted me to become a psychiatrist like him. He badly wanted this, to the point it interfered with his professional judgement on many different occasions. He wanted me to become a psychiatrist and work with autistic children. He believed that should be my mission in life.

So he would pound me over and over with how this is what I should be, this is what I should do. And then if I finally echoed it back to him, he’d say “Today Mel said that sie wanted to become a psychiatrist! This is excellent progress and shows that sie has motivation to improve and insight into hir own blah-blah-blah” and he seriously had no clue what he was doing to me there. Like that this was coercion and that I was not interested in psychiatry at all.

Anyway, the more I acted like I wanted to be a shrink, the higher functioning I got, imagine that?

And the more I pushed myself to do 'normal’ things, even if I couldn’t sustain them, I’d get called higher functioning. And then I’d suddenly collapse, and get called lower functioning, and everyone would be puzzled, but I’d actually feel better for the release of tension, and people would be running around like chickens with their heads cut off trying to see where they went wrong. And they never, ever grasped that I would never be able to become 'high functioning’ by their standards because I didn’t have the capacity to sustain that level of physical or intellectual abilities.

Anyway, according to all this, I’m high functioning, I’m low functioning, and I’m mid functioning. So what else is new?