A sneak peak from the award winning book, “Challenging the Myths of Autism” by Jonathan Alderson, Ed. M.
This story demonstrates two themes: How acceptance is the key to unlock connection and the physical body is at the core of your child’s wellbeing – while the cause of your child’s repetitious behaviour may not be clear, the body is a good place to start investigating.
BOOK EXCERPT PAGE 72
David was transfixed. He stood still and the room was silent except for the faint licking sound he made. He stood a few feet away facing me but wouldn’t let me come near. He avoided physical touch and closeness for the most part. He appeared aloof to his family and therapists except for the special rapport he shared with his mother, Rachel. David was nine years old and diagnosed with severe autism. He lacked social skills and had no language with the exception of one particular word, “chips,” which he used ubiquitously to mean everything from “food” to “go away” to “yes” and “no.” “Chips!” I noted he had fairly slouched shoulders and held his jaw slightly too forward. His fix was intense. Although he wouldn’t look in my eyes, he
followed my every step and didn’t turn his back on me for even a second. Yet, we remained completely disconnected.
For much of the day, David was fully engaged in his unique repetitious behaviour. He held his hand to his mouth, almost touching his lips, and alternated between licking and blowing on just the tips of his fingers. David spent hundreds of hours doing this, over and over, with the tip of his tongue darting in and out so quickly you had to look for it to see it. He moved his hand across his lips from right to left and back again, as if he was playing a harmonica, licking and blowing on each individual fingertip. By any measure, it looked obsessive and compulsive, like he had no choice but to do it.
David’s family chose training at the Son-Rise Program in Massachusetts because the program’s fundamental positive attitude was aligned with how the family wanted to treat their son. Rachel was grateful to have found a treatment centre that not only taught them educational strategies but also supported the family through the stresses and intensity of running a home-based program. They started with a commitment to not judge his repetitious licking behaviour and learned a technique called “Joining.” The training began with Rachel, her husband, and David’s therapists discussing any negative feelings they had about his aloof and unusual behaviours. The goal was to not see the finger-licking and blowing as bad. They believed David was doing it for a reason.
Accepting the behaviour doesn’t mean sitting back or walking away, however. Joining is a proactive strategy of doing exactly what the child does, which helps to gain more eye contact, increase joint attention, and promote imitation skills. As if they were a mirror, David’s parents and therapists would copy his repetitious ritual. When he raised his fingers to his mouth, they did the same with their fingers. When he started to lick and blow on his fingertips, they did too. They did this for months and months. The therapists practised for so many hundreds of hours with David that they got in perfect sync at times, starting when he started and stopping when he stopped, as if it was choreographed. Sure enough, the Joining built social rapport. It led to increased eye contact and David allowed the therapists to stand closer to him. They established trust by giving David control to do the behaviour and to see others Join him. The family was hopeful.
One of the benefits of doing what someone else is doing is that you learn more about it. When I Joined David by licking and blowing on my own fingertips, I became aware of the cooling sensation. Through my own experience of actually doing it, the behaviour was transformed from unusual and purposeless into a sensation I could relate to.
I reflected a lot on my sessions Joining with David. “Why would a person want a cooling sensation on their fingers?” I asked myself. “If they were burned or felt like they were burning,” I guessed. David hadn’t burned himself, though. I thought back to my basic biology and neuropsychology course work. Some kinds of skin rashes and internal inflammation can feel like burning. A pinched nerve can create a numb feeling like pins and needles, or burning sensations too (doctors call this paresthesia).
I remembered David’s posture, his slouched shoulders and protruding jaw. Could there be some chronic compression in his neck that was pinching the nerves to his fingers? He was, after all, non-verbal and wouldn’t be able to tell us of any pain or irritation. I jotted down these guesses and shared them with the family the next day. Going through my list, they confirmed there was no sign of rash and there hadn’t been any burns that they knew of. Rachel did, however, remember clearly that David’s birth had been difficult, including the doctor having to literally pull him out using forceps and potentially irritating his neck.
A few weeks later, they went to a doctor of osteopathy who con- firmed that David had chronic tension in his jaw (called temporo-mandibular joint disorder) and identified a specific area in his upper neck that was misaligned, where the nerves that extend through the shoulders down to the fingertips were compressed. We were amazed that after just a few months of osteopathic treatment, David’s finger-licking and blowing decreased from seven or more hours a day to no more than ten minutes. At the end of almost a year of treatment, the repetitious behaviour had completely stopped. Today, David is 27 years old, and his mother tells me he still abstains from licking his fingertips but sometimes rubs his thumb and ring finger together very softly. He explained through typing that it’s calming, and he has no problem stopping when asked.
My experience with David illustrates two main approaches to RRBs that can be used in combination: 1) “Joining,” or imitation, which addressed social rapport such as eye contact and trust, and 2) analyzing possible physical causes. In my own work, Joining or imitating is just one of many strategies used initially to build more rapport with an autistic student and to learn about the nature of his or her repetitious behaviours. However, Joining on its own won’t help a child learn to talk or read or write, or emerge miraculously from his “autistic shell.”
In David’s case, we all agreed that his obsessive-compulsive-like behaviour was stopping him from living his life fully. He wasn’t able to even try to learn to speak because his hands and mouth were locked in the ritual. His family had seen that attempts to physically restrain David or stop the behaviour made him turn away and pay even less attention in a battle of wills for control. Joining was the perfect approach to de-stress the situation, build trust, and learn more about the unusual behaviour. Joining alone didn’t resolve the underlying cause but it did lead us to a verifiable physiological solution.