ANONYMOUS: Diagnosis is not enough

Yale researchers recently made national headlines with a new study on the prevalence of autism. The paper, published in the American Journal of Psychiatry, was different from many previous studies. The researchers used a population sample in an attempt to capture the number of cases that were undiagnosed. To many, the results were surprising: 2.64 percent of the children were autistic, with two thirds undiagnosed. But given my own experience, I was not surprised at all. It was not until my junior year at Yale that I learned that I am autistic.

I suspect that many readers will be shocked by my previous sentence. After all, many assume that autistic people are retarded and unable to speak. While this may be true for the most extreme autism cases, many autistics are neither. The specific diagnostic label under which I fall, Asperger’s syndrome, can’t even be diagnosed in someone who is either retarded or nonverbal. While virtually everyone has heard of autism, most people do not understand what autism actually is.

The most important thing to know about autism is that every case is different. Autism is diagnosed on the basis of three criteria. But the way each manifests itself, if at all, varies greatly from person to person. The first of the criteria is special interests and/or repetitive behaviors. Many autistics have intensely focused interests in specific subjects, to a degree that others may find obsessive. The second is differences in social interaction. Many autistics will not naturally make eye contact, have difficulty interpreting facial expressions or tone of voice, or have less desire to interact with other people. The third is difficulty with speech. Depending on which of these criteria are met and how severely, an autistic person can be diagnosed with classic autism, Asperger’s syndrome, or PDD-NOS. These diagnoses are collectively known as the autism spectrum, and a person diagnosed with one is said to be “on the spectrum.”

While many people see autism as a defect or disease, others, including myself, disagree. We take an alternative view known as neurodiversity. We believe that autism has advantages as well as disadvantages. While the diagnostic criteria focus solely on aspects that are perceived negatively, people on the spectrum can have other strengths, such as excellent focus and memory. Even some of the items in the diagnostic criteria can have their benefits. For example, a special interest can lead to useful career skills. The Australian psychologist Tony Attwood has even written alternative diagnostic criteria for Asperger’s syndrome based solely on positive traits.

Unfortunately, people on the spectrum can face societal stigma. Over 90 percent of autistic youth experience problems with bullying. When autistic traits are visible in a job interview, qualified applicants are declined jobs. Even the diagnosis itself can bear unfair costs. The common phrase “lack of empathy,” used to describe the difficulty that many autistics have inferring the thoughts and emotions of others, has led to a misconception that autistics do not care about other people. Some even spread rumors that autism increases the chances of criminal insanity. In reality, it is common for an autistic person to have strong ethical convictions. The rate of violent crime among those diagnosed with Asperger’s syndrome is actually lower than among the general population. Amid this climate of misinformation, I find it necessary to write anonymously, in order to ensure that I am not subject to employment discrimination due to my diagnosis.

The Yale study found that almost two thirds of the children identified as autistic had an autism spectrum condition other than classic autism. That means they were high-functioning like me. I believe that this underscores the importance of raising awareness about autism, not simply buying “Autism Awareness” bumper stickers, but promoting true understanding of the full range of people that can be on the spectrum. Simply slapping diagnostic labels on more people will not make a difference unless parents, educators and community members understand what the labels mean. Only then can we give autistic children the opportunity to grow up as independent, productive and respected members of society.

The writer is a 2010 graduate of Ezra Stiles College. Due to the social stigma associated with his condition, the News will run this submission unsigned.