Monday, October 15, 2007
Giving autism a voice
"These are his first words to us ever. This is the first time in his life that he has expressed a thought," said Tyler's father Clarence Lazaruk. "It's in there, but he just can't get it out. This is obviously how he's going to do it."
It's called facilitated communication and it's been used for some people with autism since the early 1990s. The method involves a facilitator who sits with a person with autism and holds his or her hand, wrist, arm or even simply touches a shoulder in order to help them type with a single digit. The theory is that the presence of a facilitator can help the person focus and target his or her neuromuscular abilities to type on the keyboard. It's controversial because critics say that the facilitator can be the one manipulating the typing rather than the autistic person.
I just returned from the "Autism National Committee" annual meeting in Edmonton, Canada. I saw many people using facilitated communication, or FC, effectively in various ways. In some cases, I was a bit more skeptical. For sure, it is amazing to hear the thoughts of people whose outward appearance (including no eye contact, repetitive words and physical movement) can seem vacant or nonsensical to most of society. But FC was just one part of the conference. People who fall into all categories of the autism spectrum disorders arrived from all over North America to listen and learn from other people with autism. I followed up with an autistic woman named Amanda Baggs, whom we profiled earlier this year. Amanda communicates with a keyboard without a facilitator. (Watch Video) She and many other adults with autism came to speak about living on one's own without a guardian. This conference's tag line summed it up, "Autism: Living Life to the Fullest." This event did not focus on treating or curing autism, but rather discussing the best ways to live and understand one's autism.
As for Tyler, he tried FC again the next day with a different facilitator. He had a far more difficult time, but was able to tap out with several typos, "Years of doing silly flaky behaviors are perhaps over." I couldn't help but ask his parents about the controversy. Did they believe these words came from their son? His father said, "Some people thought the facilitators were guiding the answers, and it's popularity has fallen off with the bad press. I'm telling you there is something to it."
Do you or a loved one have any personal experiences with autism? How much emphasis is there on curing or treating autism vs. living with autism? Do you think autism is on the rise?
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