Autism awareness month: What are the benefits and risks of diagnosis?

This month is Autism Awareness Month, a national campaign to raise public awareness not only of Autism Spectrum Disorder, but also the individuals and families affected by it. This will no doubt lead to more social media campaigns and news stories surrounding autism. Parents often wonder about the benefits and risks of having their children "labeled" with autism as well as other disorders. So during this time, let's consider what it means to have the label "autism."

It's interesting to me to reflect on the different ways those who are dealing with the label of "autism" see it; some see it as an obstacle that must be overcome, while others see it as a way to express their individuality. For example, I recently watched a fascinating TED talk by 16-year-old Rosie King titled "How Autism Freed Me to be Myself." In the video she says, "People are so afraid of variety that they try to fit everything into a tiny little box with a specific label." Rosie refers to her autism as a gift that she would not trade, and in it, she celebrates the uniqueness and individuality of all.

There are many reasons why we label. Labels are important in our current medical and educational systems. It entitles individuals to resources by determining the distribution of funding and services. As a school psychologist, I encourage parents to get an evaluation for autism if they have a significant concern or their child is showing signs of autism. This evaluation may lead to a specific label of autism or other diagnosis. A label allows access to the right of special education and an individualized education plan.

Labeling also has benefits in research and funding. Autism Awareness Month exists because we have labeled a disorder as "Autism," and that label helps with funding for research, interventions and support for families.

However, as with most things, where there are pros associated with labeling, there are also cons. For example: in 1968, two researchers found  that teachers' expectations (both positive and negative) influenced student performance. If a teacher believed that a child could not do something, he or she would reduce their expectations of that child. Ultimately, the teacher might treat the student as though he or she could not perform as high academically. The researchers referred to this as the Pygmalion Effect, and it has continued to be replicated in schools. People act and treat others according to their expectations and labeling can encourage negative expectations.

The labeling of children can also lead to false generalizations; that is, teachers may believe that all children with autism may behave the same, when in fact, they can each behave very differently. Autism is a complex disorder and the science behind the causes and associated symptoms is continually evolving. Recently, the American Psychiatric Association revised the characteristics of the diagnosis of Autism to include the "spectrum" of characteristics and varying degrees of severity.

Additionally, in her book, The Autism Revolution, Martha Herbert, MD, outlines fascinating research on autism at the cellular level. She explains that autism is a product of the body chemistry at a particular moment – meaning that the symptoms of autism in an individual child can vary from day to day. So not only are there differences in the symptoms of autism across individuals, but also differences in the symptoms of autism from day to day within each individual.

Finally, it is important to remember that labeling a child with "autism" should not guide parents or teachers into thinking of the disorder only through the lens of deficits. While autism does come with challenges and the need to find the appropriate interventions and supports, it also comes with tremendous strengths and gifts. Identifying and nurturing these gifts can help to remediate and improve the corresponding challenges. In education and medicine, a label is essential for funding and support; but with that in mind, let's consider the wisdom of Rosie King, and remember that labeling shouldn't encourage people with autism "to pour their individual, brilliant light into a mold."

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