Thoughts and illustrations on living with Asperger's Syndrome.

Wednesday, October 19, 2011

The Language of Autism

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.”

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.”

* * *

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.

* * *

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.

15 comments:

  1. I really value this post, and the idea of an autistic person as having their own language or culture, without a translator.

    I will say though--I've witnessed a lot of bad things happen when sign language is discouraged in favor of PECS. PECS is not a language. ASL is. PECS limits language, ASL fosters it. Would we celebrate a deaf child being constrained to the limited requesting and question-answering possibilities of PECS instead of having a full language made accessible to them?

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  2. I agree with juststimming. I think ASL is a fantastic language for those who know someone better (family) or just happen to speak their language, while PECS is still a valuable tool for the more "foreign exchange student" side.

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  3. Thanks juststimming and #2 for your comments. The PECS vs. Sign question was one of the most surprising things I found as I researched this article. I certainly see your point that Sign is more of a true language, but I do see PECS as more universal, particularly to communicate with people one doesn't know. The reality is that most of us don't know Sign.

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  4. I am more than aware that few people know sign. But if the goal is to help autistic people communicate, then we need to be given access to a complete language. I also think, in the end, what matters is what works for the individual. Whether or not the outside world is fluent is immaterial. People who use ASL are legally entitled to interpreters, and once one language has been mastered it is easier to teach typing, etc. in another language for those times when an interpreter is not available.

    Language deprivation for nonspeaking autistic people is a huge concern with profound, fundamental, and far-reaching effects. All you can say with pecs is "I want..." or answers to simple questions. That's much, much less communication than is afforded a person who signs and who knows even one other person who signs as well.

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  5. Very good points. I hope that as touchscreen devices become more accessible, it will get that much easier for each individual to use the language that works for them, and also be universally understood. Maybe even have the device be a translator.

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  6. Just a gentle reminder to the US folks that ASL is not a synonym for "sign language"; it's just one of *many* in the world... but I digress...

    Great article! As someone with autism and selective mutism (amongst other things), I can completely relate to the metaphor. I hope many parents will read this and take it on board. It's a much better image than "OMG my kid is broken and needs to be fixed". :-)

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  7. I have often tried to explain my 20 year old son with Asperger's to people by saying, "It's like English is a foreign language to him." Not only does he not always get nuances of tone and expression, but there is an auditory processing problem. What I say and what he hears are often not the same thing. I have found we communicate some things much better by texting.

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  8. Thank you outoutout and Deborah, I'm glad to hear the foreign language metaphor resonates with you.

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  9. I think what people very often forget is that if lots and lots of people are bilingual it wouldn't matter if you could only really communicate in one language. I think everyone, whether they are Hearing or Deaf, Neurodiverse or neurotypical, should be taught a sign language if they have enough control over their limbs to do so. If everyone in an area spoke at least one of English and the local sign language and most people knew both, there'd be no shortage of interpreters for anyone who could only understand one.

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  10. Thanks Liam - I agree, sign language should be more widely taught and accessible. We all love our emoticons and text-speak so much, why shouldn't an alternative language based on gestures catch on just as much?

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  11. "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.”

    Here's the part that resonated most with me. My b/f gets emails when I have stuff I need to talk about. I've been able to get to the point of using the emails as a springboard to talk to him, but most of the time I get it all out so much easier than if I just talk to him right off the bat.

    I see the foreign language metaphor quite easily, and at the same time people are amazed at my language skills - I'm not fluent in any other languages, though I do speak Spanish well enough to communicate most things.

    I'm one of those word Aspies... I love my puns and word plays and all that. I just don't love talking to people much. Especially on the phone.

    Oh, and I got completely tripped up by your change of pic... ack. It's messing with my head.

    Chris

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  12. Hi Chris, I am the same way, I get stuff out easier in writing, and when I want to talk about it, email does make a nice springboard.

    Yep, it is still me... lol :)

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  13. I don't doubt it is still you. The pic just looks sooo different. It threw me off for a minute... At first, it didn't even look like you. But I guess that's not any surprise, given the topic of discussion, right? ;)

    Chris

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  14. I am happy to report that Christian is still making progress and is now Vintage Lite (84 Key) a speech generated device and using the LAMP system to development language. In addition, he still uses signs to communicate certain things when the device is not available. "Potty, all done, help, eat and thank you" are some of the basic signs he continues to use.

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    1. That's wonderful. Glad to hear he's doing well, and thanks for the update!

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