Thursday, May 07, 2009

William Stillman: Autism's National Treasure

Imagine you're standing up in a classroom of, oh, 25 other people. You've been told to focus on the next task. But as the teacher starts reading, "Simon says touch your fingers to the sky, Simon says touch your nose, now touch the floor..." her voice gets softer and softer, and you can't rely on your sight because there are a bunch of people in the way. There's an invisible speaker somewhere and it's playing static, like an old-fashioned television station that's gone off the air for the night and OH your clothes are scratching your skin like sandpaper and the fluorescent lights are giving you pain behind your eyes and last night's dinner is still weighing in your gut and the teacher is saying how disappointed she is in you; you're noncompliant or uncooperative and all you want to do is flee the room or shout at the top of your lungs,


That's what it's like--every day, all day--for a child with autism.

Thanks to William Stillman, an adult with Asperger's Syndrome, more and more parents, teachers, administrators, and caregivers are "getting it" when it comes to this misunderstood spectrum. For Stillman, who has spent much of his adult life out of his comfort zone, presenting to groups all across the Northeast and beyond, autism shouldn't even be called a disorder, because he believes, neurologically, we're all on a vast continuum and it doesn't make sense to pigeonhole a certain group of people because of where they fall on that spectrum.

Currently the CDC suggests that autism affects 1 in 150 individuals in the United States but, as Stillman points out, these numbers are similar all across the world. And he predicts that within 5-10 years that number will be 1 in 10...making an "us versus them" distinction of those who don't have autism versus those who do nonsensical.

Once we're armed with information, what do we do with it? Here are some guidelines that Stillman gives:

  1. Presume intellect. Even the child who is nonverbal is still "in" there. He still has abilities. He hears everything you say even if he's not looking at you, even if you assume he is "in his own little world," and especially if you're characterizing his actions in ways that are demeaning, hurtful, and humiliating.

  2. There is safety in predictability and sameness. People feel safe when they feel in control; and the more we know what to expect, the better we may adapt and prepare for it.

  3. It's not (mis)behavior; it's communication. Let's go back to that classroom where the noises are bouncing around in your head, the lights are making your eyes ache, and you're in pain. It all affects the ways in which you communicate. Yet so many times we characterize people as having certain or bad "behaviors." In fact, people do the best they can with what they have.

  4. Focus on prevention, not intervention. Don't place people in situations that set them up to fail. Don't, for instance, require children with autism to put in a full day of school, then require them to run errands with you, go shopping at the mall, then eat in a restaurant. Plan ahead and don't overtask your child's ability to cope.

  5. Make compassionate accommodations. When you know better, you do better. Don't minimize a person's fears or anxieties. Be careful of the language you use. Mean what you say. Soft touches and a gentle voice are compassionate accommodations.


April said...

What a powerful statement I work for a Head Start where there are so many situations that are like your example.
I find your tips extremely helpful

K said...

I love Bill Stillman too
Thanks for summarizing