Why I stopped calling autistic people 'high-functioning'

The first major Hollywood film with an autistic main character, Rain Man, came out in 1988.

The first major Hollywood film with an autistic main character, Rain Man, came out in 1988.

Published Mar 11, 2018

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Washington - My 10-year-old son can change from an adorable, quirky little dude to an aggressive screamer in a second. He sinks so far, so fast, that I forget about his strengths and drown in his weaknesses. I wish I could make it stop.

There's a diagnosis that explains it: Autism.

James has an average IQ and attends school with non-autistic children. He's good at sports, math and guitar. People notice him, because he sticks out from the crowd in a good way. Wearing an authentic jersey to an NFL game isn't enough. He also wears shoulder pads, a helmet and a sweat towel tucked in the front of his football pants.

James has a talent for voicing thoughts. Once in a doctor's waiting room he exclaimed, "Mom, that loud TV is making me nervous, and I'm here to get my blood drawn, so I'm already nervous enough." Several people applauded, and I asked the receptionist to turn off the TV.

I know the symptoms of James' autism are less profound than what a nonverbal, institutionalized adult with the same diagnosis experiences. But as his mother, that's not my reference point.

Not anymore, anyway.

Although autism was first named in 1943, the 1980s and 1990s saw a renewed focus on labelling. British psychiatrist Lorna Wing, also an autism mom, began describing autism first as a "continuum," then as a "spectrum." Modifiers, such as "mild" or "high functioning," and alternative labels, such as Asperger's syndrome and Pervasive Developmental Disorder - Not Otherwise Specified, were meant to capture the higher end of the wide range of presentations and outcomes among people who qualified for an autism diagnosis, and to combat the stereotype of autism as a tragedy.

READ: Teaching those with autism to live a full life

To put this in context, the first major Hollywood film with an autistic main character, Rain Man, came out in 1988. Dustin Hoffman's character, Raymond, could talk and had extraordinary math skills, but lived in an institutional setting. In 1986, a professor of animal studies, Temple Grandin, published her first book about her autism. She published another book in 1995, and in 2010 Claire Danes starred in a movie about Grandin's life.

James' autism is by no means a tragedy. But his sudden, intense meltdowns create mini-tragedies in our home every day.

Modifiers have no place in a home where a child aces 20 math problems, builds a stuffed animal fort with his sister, devours a plate of meatloaf, shoots 20 baskets on his closet-door hoop and then sparks instant chaos without warning. Over mouthwash. Only strong effort makes James as competent as he is - most of the time. And sometimes even that isn't enough.

A happy ending won't come easily. Given his hair-trigger temper, his intensity, his impulsive behavior, he's more likely than most people to end up in a heap of trouble.

No more modifiers or alternative labels. And that's as it should be.

The Washington Post

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