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| Christian Smalls, 6, uses the PECS system at school. |
Christian Smalls is like a foreign exchange student at age 6. In his world, everyone, even his parents and teachers, uses verbal speech. Christian, who has autism, is nonverbal. Just as he is trying to learn their language, they are trying to learn his.
Many believe children and adults with autism do not communicate at all. In truth, people with autism are more like foreign language speakers. And today, there are many ways for us all to bridge the communication gap.
All of us use alternative forms of communication every day. Body language, gestures, handwritten notes, and social media are like “second languages” that supplement our oral speech. Autistic people who cannot effectively express themselves verbally may prefer one of these alternatives.
Body language may be the most convenient means of expression, but is not always easy to interpret. For instance, Christian’s head-shaking can either mean he’s tired, or trying to relax, says his father, Jerome. Even children who can talk, like Justin Turner, who is 13 and has Asperger’s, may prefer to point when they want something. “We have to remind him, ‘You need to say something,’” says Justin’s mother, Kim. But body language may not always be communication.
“Communication involves two people: Somebody in a ‘listener’ role and somebody in a ‘speaker’ role,” says Dr. Susan Peterson, psychologist at the Delaware Autism Program. If a child grabs at a cookie, or is talking at the wall and repeating “I want a cookie,” he may or may not actually want to eat. Children with autism often must learn to translate a desperate desire for something into a constructive message directed at an audience.
Besides body language, children with autism may also use tools or technology to communicate. Justin has used an AlphaSmart word processor in school, though it took over a year to get it. Technology access has improved in the ten years since Matthew Collins was Justin’s age, but still remains a challenge. Matthew, now an adult with Asperger’s, had the vocabulary of an 11 year old at age 7, but wasn’t a good speller. A computer program would have helped, says his mother Susan, but he never got full use of it. “The teachers didn’t know how to use it.”
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| The PECS System |
One very promising device has no electronic parts. The Picture Exchange Communication System (PECS) lets a child give a picture to a communication partner when they want food, a toy, or an activity. Rewarding the child with what they want teaches the value of communication. Christian uses the PECS at John G. Leach School to ask to use the computer, use the bathroom, or go on the bus. He can also choose rewards, like listening to music, or sensory activities like popping bubbles. At first, he only used PECS at school, but recently, his family has been trained to use it at home. Until now, Christian has used sign language at home, which is discouraged at school in favor of PECS. Dr. Peterson explains why:
“PECS is immediately understandable to a person that hasn’t had any special training. You could go up to a person in a fast food place with a picture message, to order a hamburger and fries. With sign [language], you have to have a trained audience that understands the signs.”
“It’s not as universal as the picture exchange system,” adds Jerome, who continues to teach Christian signs to use around the house. “So at least him and I will know what he wants.” With the help of the PECS, Christian is slowly learning to construct sentences. His teachers say he is using his voice more and more, along with head shaking for yes and no, and basic signs like “help.”
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Though children receive more attention, adults on the autism spectrum have their own challenges with communication. Adults who remain nonverbal may depend on technology like a text-to-speech device to navigate mainstream society. This can help them do grocery shopping; get assistance in their workplace from an off-site job coach; or self-advocate, like YouTube star
Amanda Baggs; says Theda Ellis, Executive Director of Autism Delaware. “A lot of our guys have a lot of intelligence behind that nonverbal mask.”
Adults with milder autism use their own set of communication tools. Chris Voss, 26, who has high functioning autism and works in e-commerce, prefers writing over speaking. “I have the time to gather my thoughts and use better word choices,” he explains.
Annette Harkness, 37, is a health inspector who has Asperger’s and an auditory processing disorder. “Talking on the phone is a pain,” she says. “I prefer email, texting, and instant messaging over a phone call any day.” Both manage to communicate effectively as part of their job, and say co-workers are generally understanding of their differences.
Many adults with autism actively use social media; in fact, some see it as a lifeline. C.R. Phillips, 46, who has Asperger’s, says social media is the only time he does any kind of socializing. “I can talk to other people who are like me,” he says. “They’re more comfortable typing and reading than talking in person.”
“Facebook is essentially 95% of my social life,” says Annette, who also uses it to connect to others with autism.
Chris uses Facebook and LinkedIn, and even met his girlfriend through online dating. “I’ve been able to stay as social as I choose to be, getting the space I need,” he says.
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Understanding a child or adult with autism means understanding how they communicate. “It was a learned process,” Kim Turner says of son Justin. She learned he does well when talking about his special interests, but not as well taking phone messages. But for all its challenges, there’s a special enjoyment in talking with him. “The mystery of it all. Becoming a detective and trying to decode!”
Just as every person with autism is different, the right communication tool will also be different for everyone. Dr. Peterson works alongside parents to find what works for their child, and has seen dramatic improvements after the right tool was found. “When the person that has had extreme frustration - self-injury, aggression, tantrums - has a way to simply ask for something, a lot of that literally melts away.”
“Introducing devices early to children can open a whole new world for them,” adds Theda Ellis. Parents of a newly diagnosed child, often unsure where to turn, can find support from Autism Delaware through parent mentors and workshops.
People with autism are easier to understand if one lets go of the idea that verbal speech is the standard for everyone. Though we don’t realize it, the social behaviors we take for granted can make those who are different feel excluded.
“The world’s very confusing to a person with autism,” says Ellis. “We communicate so much through the look on our face, the tone of our voice, or our body language. If you’re not able to read that, you can’t understand each other.”
Chris Voss believes understanding autism disorders takes patience. “We can be just like everyone else, even if we come off slightly eccentric,” he explains.
Annette Harkness hopes people will not be afraid of autism, and parents will not give up hope for their children. “Being autistic is one of the most challenging experiences for me, and yet it has given me so many gifts, I would never change that,” she says. “I would never want to be cured.”
Jerome Smalls looks forward to Christian being able to talk someday, but for now, being a parent to a “foreign exchange student” isn’t so bad. He jokes that their communication is like Star Trek, where he’s speaking English, and his son is speaking Klingon, but, “He understands me, and I understand him.”
“A kid [with autism] is just like any other kid. They have some difficulties communicating, but a kid is a kid, and they just want to be loved.”
This article appears as a leadup to Autistics Speaking Day. On November 1, 2011, autistic people, along with our non-autistic allies, will take a stand in support of autism awareness and autism allies and speak out about our experiences. Visit Autistics Speaking Day on Facebook for more information.
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