Devoted caregivers key to progress for boy with autism

By Gina M. Scherffius

Houston resident Gena Shaw assists her son, Brett, in typing on a computer keyboard. Brett, 12, has severe autism, yet is able to complete extensive writing projects using this facilitation method.

(Houston, TX) When Brett Shaw's attendant asked his mother if she could try using "facilitated communication" with him, Gena Shaw said to go ahead. Diagnosed with severe autism, Brett does not speak, write or sign.

Before long, the 11-year-old began to express himself through typing-both anecdotes and journal entries. The biggest project was his poem, "Autism" (see box at left).

"Facilitated communication is controversial, but I think it should be attempted with all non-verbal disabled people," Ms. Shaw said.

Facilitated communication uses a second person without a diagnosed disability to assist the person with a disability to write or type. In Brett's case, attendant DeeDee Short first placed her hands over his on a computer keyboard and showed him how he could make letters and words appear.

Skeptics think facilitators are deceiving themselves into believing that the resulting communication originates with the disabled person, when it is really from the facilitator. However, when Brett typed the poem, his facilitator only placed her hands on his elbows, not over his hands.

"It took two days for him to write the poem," Ms. Shaw said. "He'd type a line and run off to do spinning and other behaviors (associated with autism)."

Ms. Short would gently prompt him to come back to the computer again and again, and eventually the poem was finished.

Brett, now 12, is "up to shoulder support only," Ms. Shaw said. Since the poem, Brett has written a short autobiography, stories and academic work. However, Ms. Shaw explained that Brett requires constant prodding and prompting because he still has problems focusing.

Although Brett has a serious disability, Ms. Shaw is quick to point out that "autism doesn't shut down everything." Brett goes to a public middle school, attending special education in a self-contained classroom. Through his newfound ability to communicate, he has shown that he understands spoken language, which was not always apparent.

"He has a wonderful setup this year," his mother said. "They are assuming he has intelligence, now that through his typing he is able to let people know he has a brain, that he is a person."

EduCare Community Living, part of the ResCare family of companies, supplies respite care and secures adaptive aids for Brett. EduCare also administers a program that helps Ms. Shaw to hire and employ attendants herself. According to Ms. Shaw, Ms. Short no longer works with Brett because she needed to earn more money.

"That was very difficult because she was a huge part of his life," said Ms. Shaw. "She took him places and encouraged him to interact with the world. She could even get him to clean his room!"

Ms. Shaw explained how Ms. Short would take Brett to a bookstore to select a book, which they would read together. Afterward, she would test Brett on the book's material.

Ms. Shaw and his current attendant are still working with Brett on typing.

"They tend to type better with one person," she explained. "It has been a challenge to get him to do the same caliber of work, but we need to keep him typing and not shut down. This is the only way he has been able to communicate."

Soon, Brett may have another "voice." Through Texas' Community Living Assistance and Support Services (CLASS) program, EduCare is working to obtain a voice output device that will speak what he types. CLASS began assisting Brett in 2000.

Autism

Written by Brett Shaw, age 11, for his mother's birthday.

I am autistic.
I can't speak.
I can't write with a pencil.
I can't ask for the things I need or want.
People look at me funny.
I don't know why they do that.
I am a boy who wants to be okay.
I am smart and funny.
Will I get to learn things like other boys?
I want to learn everything.
When will my teachers let me learn?
I can type to answer questions.
I can write by typing.
I can do anything I want to do.
I can learn anything I want to learn.
I am Brett Shaw.

August 13-15, 2003