Autism and Asperger Articles, Bill Stillman, Award-Winning Author

Prevention through Decoding Symbolic Communication

By William Stillman

Many people whom we serve are unable to verbally communicate in ways that are effective, reliable and universally understandable. This means they don’t talk, or at least don’t talk in ways that most of us can discern. Instead, they have had to find other ways to communicate and get their needs met, like pointing to something or pulling us to what they want. This is, of course, very limiting.

The next time you are with a group of co-workers, friends or family, think what life would be like if you were sealed off from the rest of the world and all use of your voices was forcibly removed. Your little colony also has absolutely no access to computers or even menial pen and paper. How would you communicate? Through eye contact and facial expressions, or through gestures or primitive sign language? What if the sum of your communications were reduced to a relentless rendition of charades? You may be able to get the most essential of your needs met---eat, drink, bathroom, sleep---but gesticulations and furtive gazes are open to individual interpretation. And they can’t possibly capture everything that you’d be thinking, envisioning, imagining, hoping and dreaming of. Imagine the hellish frustration of that existence, being of full intellectual capacity but no clear way to communicate it.

Now let’s revisit the people we serve in this context. We want and expect more in the way of communication other than eat, drink, bathroom, sleep; but isn’t this so often how the people we serve live each day---meeting basic needs? Let’s first appreciate the strength and resilience that each individual possesses in getting those needs met every day, often without communication that is effective, reliable and universally understandable. This alone elevates the mastery of survival tactics and coping mechanisms to an art form.

Next, it is incumbent upon every parent, caregiver and supporter to exhaust all possible avenues in offering those persons without a voice alternatives to speech through augmentative communication. This may include small, portable photos of desired activities, people, animals, and places. The photos are the property of the individual and should be maintained by her in a small portable booklet or binder. This will only have meaning if we partner with her to fill the binder with photos that stretch well beyond the basics; start with her most passionate of interests.

Assistive technology in the form of computers and computer programs to small, hand-held communication devices should be explored in seeking the right match that suits each individual’s needs, motor capacity and comfort level. The Pennsylvania Initiative on Assistive Technology is one resource for evaluating, renting and loaning this kind of equipment. PIAT may be contacted at 1-800-204-7428.

Facilitated Communication (FC) is a communication technique that builds upon safe and trusting relationships. Through FC, an individual pairs with a communication partner who has been trained in applying the FC technique. The communication partner physically supports the individual at the hand, wrist, elbow or shoulder to provide the confidence required by the individual to motor-plan touching a word, a picture, an object or a keyboard. The communication partner does not lead the person or make choices for the person in this way. Independence free of physical support is the ultimate outcome of FC but this can take years depending upon the person. Still, FC is a boundless means of communication free from parameters set by others. In Pennsylvania, FC is supported by Office of Mental Retardation policy bulletin 00-94-11 which endorses this technique in the context of individuals’ right to communication; though this bulletin was issued in 1994, it is still in effect. One Internet resource for learning more about FC is the Facilitated Communication Institute at Syracuse University http://soeweb.syr.edu/thefci. And in Pennsylvania, the Web site for the Lonesome Doves meeting group may be found at www.lonesomedoves.org.

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lease be very cautious in teaching sign language as the foremost mode of communication. Sign language is not universally understood in our communities, so fluency outside a small circle of supporters is not possible. Additionally, service providers that promote sign language as an exclusive mode of communication have an obligation, despite staff turnover, to ensure that all workers are as proficient in its use as the very person being supported. However, if the individual has a history with family and friends of using some select signs, please preserve this because it’s familiar and it’s working.

If someone is working to produce some kind of vocalization that resembles speech, 1) praise that individual for their amazing efforts; 2) do not patronize them if you truly don’t understand what they’re saying (example: “Oh yeah? Really? That’s nice!”) but do acknowledge the vocalization as communication (“I can’t understand what you’re saying but I love hearing the sound of your voice.”); and 3) go with it by finding a strong speech-language pathologist who can teach the whole team ways to draw out more of that good stuff! When in doubt, build upon the person’s most passionate of interests. Also, perhaps you’ve known people who couldn’t talk but could sing beautifully. Music is a very powerful and universal form of communication; there’s magic in its purview to touch us all. Use it as another way in.

We know that none of us can rest until we figure out alternatives to speech for each person without a voice, but what do we do in the interim? Part of supporting those without a viable means of communication means being good detectives, if not good archeologists, in deciphering symbolic communication. Remember your little colony of non-speakers? Think about how you’d react from exasperation because no one was “getting” your pseudo-charades. Would you yell and scream in frustration, throw something, bang your head against the wall, or physically aggress against the folks who weren’t “getting it?” In any one of the people we serve, we’d immediately label such outpourings as stereotypical “behaviors” when, in fact, we’re not talking about behavior; we’re talking about what is a function of communication. Communication that cannot, in that moment, be expressed in ways that are effective, reliable and universally understandable. Which would you prefer: 1) That people ascribe your outburst to being unable to communicate any other way, or 2) That people ascribe your outburst to speculations about your intellect (after all, isn’t that how you’re supposed to react when you have an intellectual impairment?).

Many of us may say that a lot of the individuals we serve love and adore food. We may have had to consult with dieticians or nutritionists to better tailor (and taper) menus, or we’ve had to monitor caloric intake because we know folks who love to eat! We’ve even had to caution some folks to slow down at mealtimes because they can’t seem to satiate themselves quickly enough. On occasion, someone we serve may have even devoured an entire freshly-baked-something left unattended on a kitchen counter. Is this a behavior or is it a symbolic communication? Well, if we consider the former, think about the process of eating in the context of the lives our people may lead. Folks who lived in congregate settings may have learned to wolf down their meals so someone else doesn’t raid their portion first. But food is also about the only daily pleasure many people have to look forward to. So many of our folks are without the social pressures we suffer from surrounding our weight and appearance; their drive to seek food is purely pleasurable because it feels good (some people who are depressed often use food as an antidote). Consuming food is a holistic process that involves all the senses. More than nourishment, it is a communal process that reminds us we are human. It is pleasurable and gratifying on many levels. In the context of decoding symbolic communication, we may wonder: Does an individual desire to eat because they’re hungry or because it fills a void in a sometimes colorless world?

In other benign examples, I’ve deciphered that the toy tractors, trains and trucks that grown men with mental retardation supposedly “played with” (because, well, they were grown men with mental retardation) were actually symbolically linked to loved ones in their past who had direct affiliation with those vehicles. These men were using the toy vehicles as a way to “call up” memories of happy childhood times riding with people who loved them unconditionally and without judgment.

Now let’s delve further where the issue of restraints is concerned. Like you, I am routinely appalled by the national news stories of child and adults of different ways of being who are abused, including the overuse and misapplication of restraints. People have been suffocated, locked in rooms, have had their arms and legs tied, and have been beaten. If you think such abuses are largely things of the past, go to www.neurodiversity.com and review some of the recent headlines of abuse from around the country.

I was once asked to consult for a team that was challenged in supporting Jeffrey, an eighteen-year-old young man with autism. At home, Jeffrey was strapped into a chair with a belt, but at school such control measures were limited. The team had taken to videotaping his physical aggression during the day while he attended school in order to have some documentation for his out-of-control “behavior.” The team sent me several such tapes prior to our first meeting to convince me of the seriousness of the situation. After viewing portions of them, I chose to focus on a very few moments of one scene. In it, Jeffrey is seated with his teacher and they are quietly paging through a magazine together. So far so good, until the teacher turns away from him to address a classroom aide by saying, “Oh, by the way, I won’t be here tomorrow morning and if Jeffrey isn’t on his best behavior until I get back, deny him his library privileges.” Pow! Jeffrey suddenly clobbered the teacher with a punch to the jaw, seemingly out of the blue.

When I sat with the team, and prior to allowing anyone to vent about “behaviors,” I began the meeting by playing that one brief portion of video and asking the team to tell me what they saw. Initially they all responded by assuring me that what I saw was typical of Jeffrey’s behaviors. I rewound the tape and played it again, requesting that they begin to deconstruct it in detail, which they did. Some team members thought that maybe Jeffrey was having a “bad morning.” I again rewound the tape and continued rewinding it for the next half hour until finally---and fortunately---the resolve about exactly what happened came from the teacher herself when she bravely confessed, “I shouldn’t have talked about him that way in front of him. It was the first time he heard of my change of plans, and I presupposed that, in my absence, there would be trouble.” Jeffrey was reacting in a clear, direct and no-frills manner, “I’m pissed at you for treating me so disrespectfully.”

Another “behavioral” issue the team wanted “fixed” was that Jeffrey became accustomed to coming into school every morning, climbing up on a desktop, getting on all fours, beating his stomach, and screaming and moaning. (Despite popular belief, Jeffrey actually had many moments of being quite sweet and gentle.) I knew this wasn’t a behavior, it was a symbolic communication---something that, in the moment, couldn’t be communicated in any other way. Knowing that many people with autism have very delicate digestive systems, I advised the team to rule out any gastrointestinal issues. After a thorough examination at the hospital, it was discovered that Jeffrey had a lower-gastrointestinal-tract bacterium that was eating him alive from the inside out. Once treated with antibiotics, his “behavior” was cast off and did not return.

In another instance, Brad had been both restrained and locked in a closet due to his behaviors became ballistic over cracks in floors, walls and ceilings. To most caregivers, this would seem irrational and typical of behavior attributed to someone who is autistic and mentally retarded. It was deeper than that, and Brad’s aversion to cracks was symbolic, linked to the one impression burned into his memory for all the hours he spent terrified and alone, locked in a pitch-black closet: the thin white crack of light that shone through just under the door. Oftentimes interpreting symbolic communication is like fitting together puzzle pieces: Cracks in floors, walls and ceilings + unresolved trauma + feelings of worthlessness and inadequacy + no trust in the limits of caregivers = triggers of reactive communication.

As was true of Brad, decoding symbolic communication didn’t solve everything; many folks have outstanding, long-term mental health issues that have gone undiagnosed, misdiagnosed or mistreated for years. We also need to support each individual in a holistic approach that takes into account all facets of her life. However, understanding silent communications can be a powerful, preventative diffuser.

I also consulted for David, a young man who was routinely restrained in his community home because of his acts of physical aggression. David’s situation was classic of the “high-maintenance person.” He had broken the noses, arms and car windows of his staff, and he was kicked out of his day program. David’s quality of life had deteriorated to the bare essentials, and his home was Spartan at best: a mattress on the floor, television bolted to the floor, and nothing on the walls. He indicated that he wanted to eat alone as much as possible and then only using paper and plastic plates and utensils. He also had the habit of becoming enraged if there were no apples in the house. Much to the chagrin of his caregivers, he insisted upon holding an apple in each hand and would sniff and lick them excessively before consuming them. He would react violently if anyone tried to remove them or offer a substitute. Perhaps you’ve already correctly guessed that David wanted paper plates and cups when taking his solitary meals as a preventative measure to ensure the safety of all---a brilliant but unrecognized bit of self-advocacy. Like the men who played with trucks, the apples also held a connection to David’s past. He was estranged from his mother but during the time he lived with her, he subsisted on a diet full of raw, fresh vegetables and fruit including lots of…apples! His team acknowledged that his mother was the one person in life he truly loved. Being without a photo album, home movies or anything person item linked to mother, David used the scent and taste of apples to internally trip his mind-movies-switch into operation; movies that replayed happy, loving memories. The apples were a tangible means to symbolically communicate his desire to reunite with mother. She was all David had, he believed.

Finally, Meg, a middle-aged woman, had the unenviable habit of constantly pressing on her bladder and making herself urinate---something she did not do prior to relocating from the state center (in which she resided for most of her life) to her community residence. Everyone assumed it was an “attention-seeking behavior,” and one person rightly speculated that it might be sexually-related. After ensuring that Meg was clear of any urinary-tract infection, I supported the team to deconstruct the process of bladder-pressing in a symbolic way. We discussed it step by step: what happens (you wet yourself); what do you get (release, warmth, scent); and what might it symbolize? We realized that everything that had enabled Meg to feel safe and comfortable and “at home” had been uprooted. But, she had never been without urine, and the warmth and scent it brought was a symbolic way of staying centered in an unfamiliar and strange environment.

What can we do to better enhance our understanding of the ways in which people who don’t speak might communicate? Here are a few suggestions, perhaps your team can brainstorm others.

• Presume intellect, and interact with a belief in competence regardless of the individual’s supposed intellectual differences.
• Strategize discreet ways of communicating very sensitive or potentially-humiliating information about someone without doing it in front of them (this includes communicating with physicians and other community professionals).
• Don’t always jump to conclusions and accept what you see at face value; often there’s something deeper lying just below the surface. Do your homework by researching the symbolic content of silent communication by interviewing family and former staff.
• Provide the individual with kind and gentle assurances that it is your role to interpret the communication, and in your endeavor to decode it, you will attempt to respectfully understand her “language.”

Regularly brainstorm the most challenging of silent communications as a team. Deciphering symbolic communication does not fall to any one person; the input of all should be welcomed and valued.

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©2005, William Stillman