An expert panel is considering changing the official definition of autism
Jennifer Pinto-Martin: Search for autism's cause hampered by one-size-fits all approach
Martin: The new criteria can lead to the development of more targeted services and therapies
She says support for children at the higher end of the autism spectrum will not be diminished
Editor’s Note: Jennifer A. Pinto-Martin is the Viola MacInnes/Independence professor and chair of Biobehavioral Health Sciences at the University of Pennsylvania’s School of Nursing. She is also the director of the university’s Center for Autism and Developmental Disabilities Research and Epidemiology.
“Will my child still qualify for a diagnosis of autism?” This is the question on the minds of many parents with children who have autism. The short answer is: Most likely, yes.
As an expert panel considers changing the definition of autism in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, parents are expressing concerns about what this will mean. The manual is the standard reference for the diagnosis of mental disorders and has an important influence on insurance coverage, access to educational support and therapeutic services, as well as research in the medical community.
But rather than debating whether the change is warranted or wise, we should focus on the effects.
The new, more restrictive criteria will combine three subgroups on the autism spectrum into one category and require a child to display more pronounced symptoms to qualify for a diagnosis. The effect may be that it would be harder for some mildly affected children to qualify for insurance to cover therapeutic and educational support services.
In the face of changing eligibility, support for children who function at the higher end of the spectrum will not be diminished.
The service needs of children who are at the higher functioning end of the autism spectrum are quite different from the service needs of those who function at the lower end of the spectrum, those who, for example, may have no language ability and exhibit self-injurious behaviors and frequent tantrums.
One positive outcome of revising the criteria could be an impetus for the development of more targeted services and therapies that can better serve the needs of children across the autism spectrum. For children with Asperger’s syndrome, this might include therapy directed at improving their social interactions and daily living skills. For those with a more severe form of autistic disorder, it could mean therapy for management of problematic behaviors.
Insurance companies will be motivated to reimburse for therapy that can demonstrate improvement in functioning, and a more targeted approach has a better chance of achieving this goal.
From the perspective of medical research, the change in criteria is both good and bad. The search for the cause of autism has been hampered by the current one-size-fits all definition. Many researchers believe that the various subtypes of autism may well have differing causes. By narrowing the diagnostic criteria, researchers can sort those with the disorder with great clarity and consistency of symptoms.
On the other hand, monitoring changes in the prevalence of autism over time – an important, ongoing research initiative – will be hampered. Tracking prevalence is one of the major tools in epidemiologic investigations because it gives us useful clues about the causes and risk factors for health problems. By changing the way in which children are labeled, we will face a decrease in prevalence. Finding out the real change in risk from an artificial increase or decrease can be difficult.
The broad definition of autism in the earlier version of the Diagnostic and Statistical Manual of Mental Disorders led to an increase in diagnoses. The subtleties of how labeling can contribute to a dramatic rise in prevalence were mostly lost in translation by the media and the take-home message was that we were witnessing an autism epidemic.
Under the new definition of autism, we must be aware of the potential effect of a decrease in reported prevalence. We should also pay careful attention to the real and ongoing needs of children and families who are coping with autism, no matter which end of the spectrum they fall in.
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The opinions expressed in this commentary are solely those of Jennifer A. Pinto-Martin.