Myth vs. Fact: Understanding what autism diagnosis means


April is Autism Awareness month. The term, "autism" is common in the media and in our homes as the number of individuals diagnosed with autism escalates.

The Center for Disease Control reported on Nov. 13, 2015, that the current prevalence of autism is 1 in 45 children, ages 3 through 17 years old.

But what is autism? Like many other disorders with predominantly behavioral symptoms, we don't have a specific test to make a diagnosis, but instead rely on a group of symptoms usually apparent early in life. How does a disorder infrequently diagnosed just a few decades ago now have a month of recognition? How is it that the incidence of autism appears to be to rising at such an alarming rate?

According to the CDC, the prevalence of autism reported in 2011 was 1 in 80 children. In 2013, the Diagnostic Statistical Manual 5, a system of classification of psychiatric disorders put out by the American Psychiatric Association, was published. Among the revisions, was the development of the diagnosis, "Autistic Spectrum Disorder" (ASD). Individual disorders such as Asperger's and pervasive developmental disorder were subsumed by the ASD label. Are there so many more cases now, or are we doing a better job of appropriately diagnosing children?

Individuals with ASD tend to have communication deficits, such as responding inappropriately in conversation, misreading nonverbal interactions, or have difficulty building relationships appropriate to their age. In addition, people with ASD may be overly dependent on routines, highly sensitive to changes in their environment or overly focused on items of particular interest to them. Early diagnosis of Autistic Spectrum Disorder can facilitate earlier treatment with less ensuing disability. But overdiagnosis can lead to the misapplication of scarce resources diverted from those in need.

It is important to understand the history of "autism" as a way to put our current knowledge in perspective. The term "autism" was coined in 1908, about 50 years before the first publication of the DSM. According to Dr. Ananya Mandal's chronological history of autism, Dr. Eugene Bleuler first used the term to describe the extreme withdrawn behavior seen in some people with schizophrenia. The term was popularized by Bruno Bettelheim who attributed the cause of autism in children to the "coldness of their mothers." According to Dr. Mandal's timeline, the term became even more familiar in the 1970s.

The observation and awareness of the complex grouping of symptoms known today as autism, far predates the term. In the mid-19th century, doctors Samuel Howe, founder of the Perkins School for the Blind and Samuel Woodward, first superintendent of the Worcester Lunatic Asylum, (now known as the Worcester Recovery Center and Hospital) identified differences in a group of children we would now think of as autistic.

While the traits haven't changed all that much since they were recognized over 150 year ago, we are at least starting to get a handle on cause. We know it isn't the fault of mothers as Bruno Bettelheim postulated. We know vaccines aren't the culprit as was thought by some. According to the National Institute of Health "Autistic Spectrum Disorder Fact Sheet," both genetics and environment play a role in the development of autism, as does parental age at the time of conception. There is a higher risk for children born to older parents, and to those born prematurely.

We also know the symptoms have a much broader range than once thought. Treatment can include different types of behavioral therapies conducted by trained therapists, dietary changes under the guidance of a pediatrician or nutritionist, and medications under the supervision of a psychiatrist.

Despite all the complexities and the unknowns, there are a growing number of resources to help those diagnosed with ASD and their families to navigate treatment and education systems. There are many books on the subject, such as Donvan and Zucker's "In a Different Key," and government resources , like those available through The National Institute of Neurological Disorders and Stroke.

Today, ASD is either more common, better identified, or both. ASD need no longer be a family secret.

Jeffrey Geller, MD. MPH is professor of psychiatry at the University of Massachusetts Medical School. He also works treating people in the community and hospital. Carolyn Sacco, RN has worked as a nurse in psychiatry since 1985, with people in hospital, clinic and home settings.


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