Proponents Of Discredited Communication Method Defend Practice
CEDAR FALLS, Iowa — For those with autism, cerebral palsy and other conditions, communicating can sometimes be difficult.
It’s something Jean Trainor knows firsthand: Her son was born with Joubert syndrome, a rare brain development disorder.
It prompted Trainor to help found the nonprofit Inclusion Connection, which eventually led to starting the annual Midwest Summer Institute at the University of Northern Iowa — a two-day conference that aims to help educators, parents and others use augmented communication methods with those who can’t communicate on their own.
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The conference, which wrapped up Wednesday, has come under fire from both inside and outside of the university for promoting facilitated communication, a type of augmented communication that critics say is scientifically discredited. But Trainor said the conference will continue.
“There’s still a need for students to be included in school, for people with disabilities to have jobs, to be able to communicate,” she said.
Pioneered in the 1990s, facilitated communication is a means by which people with serious intellectual and developmental disabilities can “speak” with the aid of a facilitator; someone who steadies the hand of the person while they type.
Since its creation, the method has drawn skeptics. Extensive research published in peer-reviewed journals has discredited the technique, and organizations like the American Academy of Child and Adolescent Psychiatry and the American Academy of Pediatrics have disavowed it as “not a scientifically valid technique.”
But Darlene Hanson, who attended this year’s conference and works as a speech and language pathologist in California, said facilitated communication is being misconstrued as putting words in someone’s mouth.
For some, the communication can involve an iPad app with a letter board or vocabulary words that an individual points to or types, sometimes with help. For those with more severe motor coordination issues, it could involve someone holding an elbow to help steady them.
“When that person is having a conversation with us … maybe we just touch their elbow, and they talk to us, or they tell us something we don’t know, and we verify it with a person in their life,” Hanson said. “So there’s different things that come up that will validate their authorship.”
Facilitated communication can take months for a person to get the hang of, according to resources provided by the Midwest Institute. The goal is to have the individual use the communication independent of help.
Sarah Corkery, the board president of Inclusion Connection and a parent, said she values the conference bringing together people from different schools and across the country. Around 200 people attended this year’s conference.
“What motivates us is how we can bring (different techniques) to our community,” she said. “We all belong in the same world, and that’s what we believe in.”
The alternative — a world where people with disabilities don’t have facilitated communication open to them — is not an inclusive one, said Trainor.
“It’s important to have a method of communication,” she said.
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