Demonstration lets you get 'inside' autism

Dan Berrett
By Dan Berrett
Pocono Record Writer
November 17, 2008

EAST STROUDSBURG — Imagine playing a game of Simon Says for an entire day while, all around you, lights flicker on and off and the drone of static blasts at odd times.

William Stillman asked about 50 parents, aide workers and teachers to attempt that exercise briefly during an all-day lecture, "Demystifying Autism," at First Baptist Church on Nov. 6.

Stillman, an author, speaker and person with autism, was invited to Monroe County by Youth Advocate Programs. It is a national organization, with an office in Kresgeville, that works with young people with different needs, from avoiding the criminal justice system to needing behavioral health services.
Stillman asked the audience members how they felt when the one-minute, Simon Says exercise was finished.

Confused, overstimulated and hopeless, they said.

"You know people who are experiencing and feeling that every day," he said. People with autism spectrum disorders tend to be more sensitive to sounds and sights than others. The hum of fluorescent bulbs, the squeak of high-pitched voices, or the clicking of high heels on a hard floor can overstimulate to the point of distraction.

Stillman said he has Asperger's Syndrome, which is a milder version of autism. As a child, he said his diagnosis was that he was "weird." He said he was seen as antisocial, arrogant, aloof and quirky. "Among my typical peers, I was harassed and abused," he said.

Throughout the day, he tried to show what it's like to see the world through autistic eyes. He also tried to reframe how people think about autism. For him, demystifying autism is less about altering how people on the spectrum behave, which is the focus of most therapies. Instead, Stillman wants to change the perceptions of those who live and work with people with autism.

While people with autism may be unable to speak or have very little affect, they can think, feel and understand far more than they let on, Stillman said.

Instead of behaving in ways that are conventionally familiar, an autistic person's responses may be caught in a web of neural blips and misfires. Stillman argues that it's similar to what happens w hen someone's hand goes dead when they fall asleep on it.

"What if your inability to use that limb defined you?" he asked.

The trouble communicating extends in both directions — from the autistic person to wider society, and vice versa.

The subtleties of human communication — figurative language, facial and body language, and eye-contact — can prove daunting to people with autism.

"Those of you who are neurotypical, or average, are privy to a code," Stillman said.

He related a story of a young boy with autism ordering a birthday cake. When the person working at the counter asked him what he wanted his cake to say, the boy laughed, explaining that cakes can't talk.

It can be equally puzzling for autistic people to express themselves to other people. Their thoughts and feelings may come out differently — in the form of rocking back and forth, hand-flapping and repeatedly opening and closing doors. Stillman calls these "autistic hieroglyphics" that must be decoded to be understood.

Many educators view these repetitive actions as habits to be avoided because they allow those on the spectrum to duck human contact.

Stillman views it differently.

"This is a strength because it has a purpose and allow s them to create control," he said. "You do it, too."

He described gum-popping, twirling a lock of hair or fidgeting with an earring as ways that neurotypicals achieve the same end. "We're all more alike than we20are different," he said.

And when people with autism bang their head, bite their hand or other people, run away or throw desks, it's a function of other issues, Stillman said. They should be seen less as problem behaviors, and more as efforts to communicate.

"It's important that we listen to what people with autism are telling us," he said.

Stillman also takes issue with the conventional vocabulary of autism. He balks at calling it a disorder and at describing "behaviors," such as hand-flapping, as things that must be corrected.

He also chafes at language suggesting people with autism are not mentally capable. Some organizations distribute cards with tips cautioning that those with autism may "not understand what you say" or "act upset for no apparent reason."

Stillman believes that people with autism understand far more than they let on. And he is adamant that they should be treated with the presumption that they have an intellect — even if its expression is subtle and easy to miss.

Stillman's message of empathy runs through many of his books, including "The Soul of Autism," "Autism and the God Connection" and "The Autism Answer Book."

He prodded his audience to spread his message. People increasingly will come into contact with those who are autistic.

Current estimates from the Centers for Disease Control and Prevention are that one in 150 8-year-old children are diagnosed with autism.

At that rate, about 300 children in Monroe Co unty would have received that diagnosis.

"Every year we'll have more and more little people coming into our schools," he said. "We have to gear up."