Today the American Psychiatric Association announced plans to change autism diagnostic categories in the newest version of the Diagnostic and Statistical Manual (DSM). Notably, it has been proposed that the diagnoses of Asperger syndrome and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) be removed from the manual. A broad category of Autism Spectrum Disorder has been proposed instead.
These proposed changes are certain to be met with a wide range of reactions, and such reactions will depend on one’s perspective. From the scientific perspective, research conducted over the past decade has shown that there is no strong scientific rationale for distinguishing among autism, Asperger syndrome, and PDD-NOS. For example, research has shown that these subtypes are not linked to specific etiologies (causes) or specific treatment recommendations. Studies have shown that autism and Asperger syndrome can show up in the same familes and that specific autism risk genes don’t aggregate neatly within diagnostic categories. Treatment recommendations for Asperger syndrome versus high-functioning autism or for autism versus PDD-NOS are not different. So, from a scientific point of view, the changes in the DSM make sense. The new classification system recognizes that autism is a spectrum disorder that varies quantitatively in symptom severity and expression. The changes will allow us to look at the the landscape of autism broadly and focus on clusters of symptoms and seek etiological commonalities in disrupted signaling pathways that promise to tell us more than we have learned from considering each diagnostic category separately.
People in the community living with autism spectrum disorders may have a very different viewpoint, however. For some individuals who have been diagnosed with Asperger syndrome or other subtypes of the ASD spectrum, the change in the DSM will be very disruptive and distressing. Many individuals personally identify with the diagnostic label they have been given and grown up with. They may participate in support or advocacy groups that identify with a specific label, for example “Aspies”. Thus, although the scientific and professional communities may institute a change in the diagnostic criteria, many may choose to use the original labels despite the changes in the DSM. And there is nothing wrong with this. In fact, there is precedent for this. For example, “sensory integration disorder” and “nonverbal learning disability” are examples of labels that have been used by the clinical community, but are not specifically part of the DSM.
One potential positive impact of the proposed changes to the DSM is that they may help increase access to services to those individuals with Asperger syndrome and PDD-NOS who previously were denied access to autism-related services. From the perspective of a parent who is struggling with their young or adult child’s symptoms, it hardly matters what name is given to the collection of their symptoms. Increased access to services can help ease the burden of symptoms for those struggling to manage them.
We need to be respectful and compassionate about what a diagnostic change might mean for individuals with ASD and their families. We invite you use this space to share your thoughts about this change and what it means to your family. We will be listening and look forward to hearing your perspective.