One of the first things people ask me about my 21-year-old son Mickey is, “Is he high functioning?”
I hate that question.
Are they asking his IQ score? If he speaks? Whether he will be able to live independently? I don’t know how to answer.
How well does anyone function all the time? Isn’t it circumstantial? Mickey does well socially when he feels comfortable and safe with people he knows. He has learned to ask such appropriate questions as, “What did you do today?” or “How was your weekend?” although he has a limited amount of small talk in him. He still struggles to sustain a complex conversation. When he doesn’t feel like interacting, he’ll say, “Leave me alone, I don’t want to talk.” Not exactly polite, but still functional. But put him in a room teeming with noisy, unfamiliar people or loud music? He’ll be out the door so fast he’ll leave skid marks.
All people are high functioning in some ways, less so in others. If you ask me to write an essay, I’d say—modestly—that I am fairly high functioning in that regard. But if you depended on me to rappel down the side of a cliff or navigate a raft through white water, you’d be putting your money on the wrong gal. You’d never make it out alive.
As students, we’re all expected to do well in every subject. In reality most of us are not good at everything. As we grow, we tend to narrow our focus. We specialize. We seek out work in areas where we can excel. Autistic or not, everyone has a mix of strengths and challenges.
If you can do calculus but can’t tie your shoes, are you high or low functioning? Does high functioning mean you can live independently but low means you can’t? Mickey can’t yet safely turn on the stove to cook for himself. But he is adept at making his own sandwiches and reheating food in the microwave. He won’t starve. Where does he fall on the continuum? Just because an autistic person can speak, make great eye contact or perform academically doesn’t mean that he doesn’t also have major social and behavioral challenges. Where is the arbitrary cut-off point between high and low? Who gets to decide?
When Mickey was 19 months old he saw his first speech therapist. She said he had a “mild” delay. Several months later, a different evaluator told us the delay was “severe.” She said, “It’s possible he may never speak at all.” Mickey hadn’t changed; he was still the same loving, lovable little boy with the megawatt smile. Nor had his challenges changed. What had changed? The evaluator.
During Mickey’s first year in a self-contained high school class, teachers gave him work that was too challenging. Mickey became disruptive. He distracted other students with jokes, off-topic remarks and such questions as, “Do brown cows make chocolate milk?” My husband and I asked for a Functional Behavior Assessment.
After observing him, the consultant they’d hired noted that Mickey was anxious and frustrated because the curriculum wasn’t geared to his needs. They’d expected him to comprehend ninth-grade reading materials even though he was reading at a fifth-grade level. She developed a behavior plan for the school to follow.
Privately, she told us, “When they called me to come in, they told me I’d be observing a low functioning child. But your son is verbal and socially connected. That’s not low functioning.”
It’s human nature to want to categorize people and create hierarchies, but labels can be dangerous. They can so easily be used to dismiss people, to see them as “less than.”
How should I respond when someone asks me where Mickey “falls” on the autism spectrum? His development isn’t linear; you can’t measure it with a yardstick or clock.
Maybe the only truthful answer to the question “Is your son high or low functioning?” is simply, “Yes.”