Look Me in the Eye by John Elder Robison
Reviewed by Florencia Rusiñol, music therapy intern
In my internship, I come across children with Autism Spectrum Disorder (ASD) often. ASD has become a relatively common diagnosis in 2015. In 2014, a study was released stating that 1 in 68 children is diagnosed with ASD (Center for Disease Control and Prevention, 2015). (Note: The CDC recently released a new study saying the number has dropped to 1 in 45.) Recently, the Diagnostic and Statistical Manual of Mental Disorders broadened the definition to include Asperger’s Syndrome, which, in my opinion, made this diagnosis even more difficult to understand. Being that the philosophical debate around this disorder is so massive, it may help to understand smaller cases of Autism that may help us better understand how to treat here and now. In my case, this book provided just that.
John Elder Robinson depicted his journey living with Asperger’s Syndrome through this story. As a young boy, he recalled specific instances where he wanted to make friends but could not. During the early years of elementary school, he tried to make friends with a girl by patting her on the head, because he had seen that that was the way to make friends with a dog. Needless to say, it did not work. Another time, he described not knowing how to respond when someone commented something to him. When a friend would say, “Hey, look at my toy truck,” he would respond with whatever was on his own mind, rather than reciprocating a response. These difficulties in social situations continued into his adulthood. Another facet of his childhood that continued into adulthood was his fascination with machines. As a child John became infatuated with trains, planes and any kind of machine. As he grew, he read, learned, and became an expert at fixing machines. John described fixing record players, amplifiers, toys, cars, and many more objects. His social strains and affinity and intelligence for a subject were his most characteristic traits of Asperger’s Syndrome. However, John’s story took many other twists and turns.
John’s parents began to have difficulty in their marriage early in his life. His father became an alcoholic and his mother had a history of mental illness in her family. Unfortunately, John experienced mental and physical abuse from his parents from an early age. On top of his social difficulties, his family moved around frequently, so any relationships he was able to form in the early years, he quickly lost. Because of his intelligence and early knowledge of what he loved (machines), he was often bored in classes and acted out. During his early teen years, he dropped out of high school after passing his GED. Between all of his spare time and his generally absent parents, he began spending his time in bars and music venues downtown. Soon he began using his machine expertise to fix problematic amplifiers and became well known in the local music scene. He began working more and more into the music scene, which eventually landed him a job creating electronic trick guitars for the lead guitarist of the band KISS.
John’s experience in the music scene was not simply due to his success. He recalls this time in his life as positive because he was able to connect more with musicians that anyone else. He felt that they were “misfits” just as he was and he felt more accepted than he ever had before. Though he felt such solace living in this scene, he found an unfortunately reality that many touring musicians find—pay comes few and far between. He went on to attempt life in the more organized working world. He began working for Milton Bradley in research and design. He felt comfortable in that job because it mostly involved working with the machines. He was good at his job and shortly began to climb the corporate ladder, but John explains feeling much more uncomfortable in a managerial position, because it meant dealing with people. John’s bluntness and difficulty empathizing put him at odds with his employees and he realized that, so he quit. Now entering middle age, John began fixing cars, depicted as his first love. He repaired old cars and grew a personal business out of it. He felt more at ease being able to run his company his own way and work with machines again. Most importantly, it was around this time that he learned about Asperger’s Syndrome and realized that all of his life, that disorder had been his reality. Looking in retrospect, John is able to explain so many of those instances in his life, particularly the social detriment that came from this disorder. And yet, John stated in the beginning of the book being proud to be Aspergian.
There are two specific conclusions that John makes that beautifully dismantled some of the ideas I believe many people have about ASD. John spoke of recalling from as early as he could remember people telling him to look them in the eye. Many would ask him why he would not look at them and make terrible conclusion about his future revolving around that one action. People he knew told him he would never go far and even went so far as to say that he would become a psychopath because of his lack of eye contact. I do people are aware enough these days not to make such brash conclusions to a child, but I do see that many treatment goals in the music therapy profession revolve around eye contact. A frequently addressed social skill is eye contact. On one hand, eye contact is a large part of social body language in our culture. On the other hand, John explained that the reason he did not make eye contact was simply because it made him uncomfortable. In this moment, I can think of several clients that communicate clearly, but have difficulty making eye contact, just like John. The question that his statement left in me is this: Is it really so important to make eye contact if it makes them uncomfortable? A similar example is that many people feel uncomfortable talking on the phone. Do we force them to talk on the phone or do we accept other mediums of conversation such as text or email? Is eye contact truly so necessary that we write goals around it or are we wasting time addressing this subject when we could be addressing greater needs?
The most important lesson I learned from this book was one of loneliness. Because of John’s diagnosis and social deficiencies, many people in his life inferred that he wanted to be alone. John recalled spending lots of time alone as a child but clarifies a gravely important aspect of ASD. John stated that he had trouble forming relationships for so long, but that never meant he wanted to be alone. John experienced social isolation because he was different, and I am willing to bet that many of our clients feel the same. Perhaps it is more critical that we spend time giving these clients the tools to be able to form relationships. I spend time wondering now if it is possible to show our clients that creating social relationship is not only feasible, but also necessary. John’s story gave insight to the complexity and difficulty that is ASD. Furthermore, it helps begin a conversation of what is truly necessary in the lives of those with Autism Spectrum Disorder. It is no secret there is much to learn still, but while research is still being conducted, it is also vital for us as professionals to learn as much as we can from the insiders, the ones who have lived this story and can tell their tale.
Center for Disease Control and Prevention. (2015). Autism spectrum disorder: Data & statistics. Retrieved from http://www.cdc.gov/ncbddd/autism/data.html
Robinson, J. E. (2008). Look me in the eye. New York: Random House, Inc.