Autistic Teenager finds his voice

[Guest guest]

Autistic teenager finds his voice

Monday, July 31, 2006

By Brieaddy

Staff writer

Burke speaks with poetic elegance.

That he can speak at all is a triumph of his own determination, years

of intensive and innovative therapy, and access to inclusive

classrooms.

Burke, 19, of Westvale, is severely autistic. And until he said his

first words at age 12, the realistic fear of his parents was that he

would never talk.

" Before that, it was a very dire future, " said his mother, Sheree

Burke. She said the woman who diagnosed at age 3 ended the

session by saying, " There are group homes. "

Instead, he is a Westhill High School graduate about to enter Syracuse

University.

Not only does he speak, but he has addressed an international

conference in Germany, a therapy training session in England and

several seminars around the United States. His story has been filmed by

CNN and reported in People and Time magazines and El Pais, Spain's most

circulated newspaper.

In September he'll join the Association of Persons with Severe

Handicaps in presenting to Congress a public policy statement, " The

Right to Communicate.

"

Having claimed his spot in the community, Burke has a lot to say about

the years of silence when nobody knew exactly how smart he was.

" Yes, I understood everything, but people thought I was lost in the

reverie of autism, " he says. " I screamed at the idiots who treated me

like a kid that was invisible. "

He can speak short thoughts extemporaneously. For long sentences, he

types on a small keyboard or laptop, then says the words out loud.

This fall he'll enter SU's College of Health and Human Services.

" I would love to study the genetic puzzles of the brain, " he types,

then says.

Burke was one of the earliest students, and is one of the most

successful beneficiaries, of facilitated communication, a controversial

therapy brought to the United States from Australia by Biklen,

now the dean of SU's School of Education.

A facilitator supports the finger, hand, wrist or arm of a person with

a speaking disability (not always autism), allowing him or her to type.

The writings of such subjects have sometimes revealed high intellect

where mental retardation was thought to reside. Critics say it is the

facilitator, not the subject, whose thoughts are being typed.

Scientific studies are split on whether the therapy is effective and

several professional organizations remain highly skeptical.

Biklen confirms the therapy can be abused or misused and that it is not

easily subjected to simplistic studies. He insists the results of the

therapy can be, and have been, measured.

His evidence is in the progress made by Burke and a handful of others

with autism who have learned to communicate virtually independent of

help.

" They're really giving us a completely different vision of what is

possible, " said Biklen.

Burke is the perfect example of why those who can't communicate should

be afforded standard educational opportunities, says Biklen.

" It's like the Hippocratic oath for educators, " he said. " If you don't

take that position you've really written the person off. "

Biklen and Burke co-wrote an article titled " Presuming Competence "

published this year in the periodical, " Equity & Excellence in

Education. "

One passage in the article is Biklen's favorite observation written by

Burke.

In it Burke describes, with frustration and a bit of humor, all the

fuss associated with his inability to tie his shoes, an accomplishment

used by both parents and educators as a signal of development.

In the grand scheme of his struggles, Burke viewed tying shoes as

inconsequential.

" Isn't tying the speech to my mouth from my brain more critical to life

than making a piece of cotton secure? " he wrote. " When I was 15, I tied

my shoes and people rejoiced as if I had won an enormous prize in some

battle. "

Feeling fortunate

Burke and his mother, Sheree, say he was fortunate to have access to

inclusive education - rather than segregated classes for people with

disabilities - from an early age.

He started out at Jowonio, which teaches children with a wide range of

abilities and disabilities.

" Jowonio opened the door to the heart and I sallied forth into the

world of the regular life, " says Burke.

His big breakthrough in facilitated communication came with the

acquisition of a small keyboard that digitally displays what is written

on both the front and back. The device, a $4,500 LightWriter developed

in England, also speaks the typed sentence.

With practice, progressed to typing, then speaking on his own. He

still needs a facilitator, most often his mother, to provide cues that

help him act on his thoughts.

" It looks deceptively simple, " said Sheree Burke, " but there's a lot of

intricacies. There's a lot going on. "

Sheree and her husband, , have employed a laundry list of

theories and techniques - SAMONAS listening therapy, craniosacral

therapy, The Flo, The Infinity Walk, Wilbarger Brushing and Joint

Compression, Neurological Music Therapy - to advance 's

development.

credits a listening therapy with providing the key to his ability

to tie his shoes.

Sheree Burke is still amazed that the Westhill Central School District

not only accepted but embraced all the complicated methods required to

help complete his courses.

" Westhill, they certainly stepped up to the plate, " she said. " And not

just bodies but committed educators. "

Burke will be Syracuse University's first severely autistic

student, but not the first in Central New York. Three have graduated

from Le Moyne College, according to the school's public information

office.

Biklen will not speculate on how much Burke can improve his

speech.

" There's an incredible variety within the disability, " he said. " We

have a long way to go. We've got to have a lot more people with the

kind of success has had. "

And, he added, the problem will remain more an issue of society's

willingness to deal with Burke rather than his desire to interact with

society.

" Clearly, the biggest struggle is with a society that doesn't get it

and is still uncomfortable with disability, " he said.

Burke is philosophical about the upper limits of his progression. Even

as he chips away at his limitations, he is accepting of his disability.

He typed, then said: " Autism is a partner in my dance of life and I

fear sending it to a seat on the side. "

© 2006 The Post-Standard.

Copyright 2006 syracuse.com. .

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