Sunday, August 23, 2015

Behavior as Communication in Autism

 
Last Sunday, Salon posted a fascinating online article about autism entitled “We have autism all wrong: The radical new approach we need to understand and treat it.” [To read this article, please click here.] Written by Dr. Barry Prizant, a speech and language pathologist who has extensive experience in working with people with autism, this article proposes that rather than stopping behaviors commonly found in autism, the reasons behind these behaviors should be addressed instead.

Dr. Prizant notes that autism is usually diagnosed based upon observation of various “autistic behaviors,” such as hand flapping, echolalia, and rocking, but no one bothers to ask why the child is engaging in these behaviors. As he points out, the logic becomes circular: “Why does Rachel flap her hands? Because she has autism. Why has she been diagnosed with autism? Because she flaps.” Similarly, I once asked Alex’s behavioral therapist why he, like other adults with autism I have observed, often holds his hands awkwardly bent at the wrist and close to his chest. She told me that it’s just a common behavior seen in adults with autism. I suspect that he does this because it makes him feel secure, a standing fetal position that instinctively puts his hands where he can protect his chest and head.

Additionally, Dr. Prizant states, “Instead of seeking to understand the child’s perspective and experience, they [caregivers] simply try to manage the behavior.” He further asserts, “This way of understanding and supporting people with autism is sorely lacking…It neglects the importance of listening, paying close attention to what the person is trying to tell us, whether through speech or patterns of behavior.” Or, as behavioral therapists tell parents of children with autism: behavior is communication.

Later in the article, Dr. Prizant goes on to explain that because of differences in their neurological systems, people with autism must deal with dysregulation challenges. He notes that people with autism “experience more feelings of discomfort, anxiety, and confusion than others” and “have more difficulty learning how to cope with these feelings and challenges.” These challenges occur because of communication issues and difficulties in dealing with change. Sensory and medical issues also contribute to the dysregulation problems people with autism face.

As Dr. Prizant notes, all people face stressful situations in life that make us feel dysregulated, but people with autism are more sensitive to these circumstances and often do not possess the skills needed to cope with these issues. For example, he describes children with autism who cover their ears and run screaming when they hear a loud noise, overwhelmed by the sensory overload. Other times, the reason behind the behavior may be less obvious, but he urges parents and therapists to try to find the motivation behind the child’s behavior. He states: “In most cases, the child can’t explain the behavior in words, so it’s up to those close to him to sort through the clues.”

With Alex, we have learned to help him express his emotions so that we can better help him cope. For example, his hands may shake for a variety of reasons. Consequently, we will ask him if he’s cold, nervous, excited, or just shaky. He has become very good at explaining the reason behind his trembling hands, and we can help him once we know the reason by getting him a blanket, reassuring him, sharing his joy, or reminding him that his medications just make his hands a little jittery at times. We have also discovered that when he grabs our arms, this is not an act of aggression, but a cry for help instead. He needs something but is so upset that he cannot express it verbally. Rather than addressing the behavior, we have learned to acknowledge that he’s upset and try to get to the bottom of whatever has caused him to reach out to us for help. Once we know the source of his upset, we can reassure him that we will help him cope.

Last week, one of my students who has autism approached me and suddenly moved her hand toward my head. Having seen Alex do similar motions, I took her hand gently in mine, moved it down into a friendly handshake, and told her that I was happy to see her. She smiled and told me that my necklace was pretty, which was probably the reason why she had impulsively moved her hand toward me; she wanted to touch my necklace because she liked it. Instead of reprimanding her for violating personal space, I was able to help make her behavior a socially acceptable one—a grab for an intriguing object that could have been perceived as threatening instead became a respectful handshake. My experience with Alex had taught me how to respond in a way that was understanding of her needs.

To conclude his article, Dr. Prizant explains, “Most of the behaviors commonly labeled ‘autistic behaviors’ aren’t actually deficits at all. They’re strategies the person uses to feel better regulated emotionally. In other words, in many cases they’re strengths.” Specifically, some behaviors not only signal that they are overwhelmed, but these actions also help to calm them by helping them gain control of the situation that feels out of control. Furthermore, he points out that all people have routines and methods to calm themselves in stressful situations, but children with autism may be discouraged from doing these behaviors, such as rocking or flapping. For example, I hum when I’m nervous, but I know that it’s not socially acceptable to do this in certain situations. Alex, on the other hand, will ask a question repeatedly when he is nervous, not caring how others perceive him. Rather than telling him to quit asking the question, we repeat his question so that he knows we have heard his concern, and we give him the opportunity to answer his own question. Realizing that he already knows the answer, Alex becomes reassured that everything is all right and stops repeating the question.

As an autism mom, I thoroughly appreciate Dr. Prizant’s insights into why people with autism behave the way they do. Because their nervous systems are especially sensitive to sensory issues and anxiety and because they often lack the verbal skills needed to express their feelings, they behave in untypical ways to communicate their emotions. Those who deal with people who have autism need to remember that they are doing the best they can to cope in a world that overwhelms them. Moreover, we need to figure out the reasons for their behavior so that we can help them cope and communicate their emotions. While we may not always understand their behavior, we certainly need to be understanding of them, showing compassion for their struggles and reassuring them that we truly care.

“Reflect on what I am saying, for the Lord will give you insight into all this.” II Timothy 2:7

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