Q&A: A look at nonverbal autism, facilitated communication

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Posted: Apr 24, 2016 12:19 AM
Q&A: A look at nonverbal autism, facilitated communication

Benjamin Alexander, the first student with nonverbal autism to attend Tulane University in New Orleans, is an English major and a writer who's had essays published locally. He uses a form of facilitated communication, or supported typing, and hopes to educate others about living with autism.

Here are some questions and answers about nonverbal autism and facilitated communication.

WHAT IS NONVERBAL AUTISM?

Researchers have found that as few as 1 in 10 people on the autism spectrum are nonverbal, meaning they have little to no meaningful spoken language. Dr. Paul Lipkin, an autism researcher in Baltimore, says a majority of people who are autistic and nonverbal generally don't speak because of lower intellectual ability. But he and other experts say they have little doubt that some have inner voices and thoughts, some quite profound.

"It will always be one of the rarer conditions within the autism spectrum. But we are more likely to recognize someone's ability than we would have before . and to focus on the abilities," says Lipkin, director of the Interactive Autism Network at the Kennedy Krieger Institute.

CAN PEOPLE WHO ARE NONVERBAL AND AUTISTIC LEARN TO COMMUNICATE?

Yes. There certainly are cases where nonverbal people on the autism spectrum have learned to speak a few words. More often, they learn to write or type. Dr. Paul Wang, vice president of medical research for the organization Autism Speaks, points to Naoki Higashida, a young man in Japan who has written a book about his nonverbal autism, "The Reason I Jump," and Carly Fleischmann, a Canadian woman who is on the autism spectrum and has written a book with her father. In India, Tito Mukhopadhyay communicates with a very few spoken words and in writing and also composes poetry.

Some experts, such as Wang and Lipkin, think these cases are rare. However, others who study augmentative and alternative communication, or AAC, say early intervention increases the chances that nonverbal people develop language or communication of some sort, even if very basic. Some who are nonverbal are able to use software and apps with pictures to help them communicate. Some learn to type using software with predictive text. And some, like Mukhopadhyay, also can write by hand with pen or pencil.

Some teachers and parents also use facilitated communication, or supported typing. However, that method is controversial.

WHAT IS FACILITATED COMMUNICATION?

Facilitated communication, first used with patients with cerebral palsy in Australia in the 1980s, is a method in which the hand, wrist or arm of a nonverbal person is supported by another person so that he or she can type. When using predictive word processing software, typists choose from a list of words after typing a few letters. Ben Alexander uses this type of software both at home and in class. A computer voice can then read his words aloud.

WHY IS FACILITATED COMMUNICATION CONTROVERSIAL?

Studies have found that most people who used facilitated communication received too much help from assistants, raising questions about whose thoughts were really being expressed. In some instances, courts also have thrown out testimony derived from facilitated communication. A compilation of research that found this method unreliable appeared in the academic journal "Research and Practice for Persons with Severe Disabilities" in 2014. Several professional organizations, including the American Academy of Pediatrics, have issued statements about the pitfalls of facilitated communication.

"Every time researchers have looked into it rigorously, it doesn't pan out," Wang says.

But some experts say its usefulness cannot be ruled out in all cases. "I don't think it's ever been said it's a definite no. There's always exceptions to everything," says Lipkin, adding that he also wouldn't want to give false hope to families with autistic children who are nonverbal.

Connie Kasari, an autism expert at UCLA, says that if the results are consistent, "they may be real."

"I have been very much surprised by students who are able to participate fully in academics when using AAC" when behavioral testing predicted otherwise, she says. "So you never know."

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More information on Augmentative and Alternative Communication: http://www.asha.org/public/speech/disorders/AAC/