How Not to Describe Autism

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Happy women chat. Getty Images

If you have a child with autism, chances are you've struggled to explain just what that means to people who are concerned, eager to help, or just plain curious.  And, like me, you may have found it very tough to come up with an accurate description that really describes both your child and the disorder as a whole.

The best answer I've been able to come up with, when people ask about my son, is very specific.

For example, I'll explain, "Autism is a developmental spectrum disorder, which means you can have a range of symptoms at varying levels of severity. Most people with autism have problems with social communication; some just have a hard time with conversation, while others can't speak at all. My son is somewhere in the moderate range, which means that while he has significant challenges, he's also more than capable of carrying on a conversation, reading a book, telling a story, or coming up with creative ideas. He's especially good at music; he plays clarinet in the town band, and has a terrific bass voice!"

While this response may not help you a great deal (assuming your child is not much like mine!), it does illustrate the idea that you're not describing a disorder -- you're really describing a person.  And when you're describing a person in terms of a diagnosis, it's important to accentuate the positive -- so that your listener doesn't make the assumption that your child is a "lost cause."

With that in mind, here are some tips on how NOT to describe autism:

  1. Have you ever seen the movie Rainman (or any of the many other depictions of autism in movies or TV)?  Well, autism is just like that!  It's true that most people can relate to fictional presentations of autism -- but no fictional representation explains autism as a whole.
  1. It's a disease of the brain.  Nope, autism isn't a disease of the brain.  It's a developmental disorder.  It may be easier to use words like "disease" because they're better understood, but when you do you mislead your listeners.
  2. It's a disorder that makes it really hard for people to make friends, graduate from school, or hold down a job. This kind of description is a great way to lower expectations and engender pity as opposed to friendship or inclusion. While it's true that many people with autism do have troubles in those areas, many people with autism do, in fact, make friends, graduate from school, and hold down jobs.  Quite a few get married, too.  Autism can lead to moderate to severe challenges in many areas, but treatment and support can change outcomes quite dramatically.
  3. You see how my son/daughter covers his/her ears when there are loud noises, and flaps his/her hands when excited? That's autism.  Describing specific, visually obvious symptoms as "autism" is really pretty inaccurate. While one person may cover his ears and flap his hands, another may enjoy loud noise and have no problem sitting still -- and yet another may rock back and forth when excited.  By describing a stereotypical "autistic look," you're actually making it more difficult for your listener to understand the diversity of autistic people.

    Remember that when you're describing autism, you're also setting the stage for acceptance, inclusion, and tolerance -- not only for your own child, but for other autistic individuals in your local world.

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