As I was preparing to write about the new diagnostic criteria proposed regarding the identification of autistic spectrum disorders, a front page New York Times article created a stir about them. The authors of an as yet unpublished study looked at children who had been diagnosed with milder impairments such as Asperger Syndrome and found that a high percentage may no longer be diagnosed under the newly proposed system. The researchers involved in the DSM-5 changes disagree, and have their own data showing that the new criteria include higher functioning children and adults. While I am hopeful the authors of the revision will continue to keep in mind the need to identify higher functioning individuals with autism, I believe simplification of the autism diagnosis is going to help families and children get the care that they require.
The new DSM-5 (the diagnostic manual for clinicians), due for release by the end of 2012, will consolidate all autism-related diagnoses into one. Today, children with autistic spectrum disorders are grouped into those with autism, Asperger Syndrome or pervasive developmental disorder not other specified (PDD-NOS). As of the DSM-5 release only ‘autistic spectrum disorder' will remain. This change is not nearly as radical as it seems, as the individual labels now being used don't say much about long-term prognosis or about the need for specific short-term interventions.
Differences in the development of basic social skills link the three possible descriptions of autism spectrum disorder, along with related language and communication difficulties. A child with an autistic spectrum disorder does not intuitively understand the social world. A severely affected child may have little apparent interest in people around him. Someone with mild impairment may be quite motivated socially, but lack the skills to initiate or maintain social exchanges or play.
In the present system a child with any of the three diagnoses can have mild, moderate or severe levels of impairment. Yet in common usage autism implies more severe impairment and may carry a heavier emotional load for families. Asperger Syndrome and PDD-NOS are used to describe milder disability. In fact, the distinction between the three comes down to patterns of symptoms, not severity, and says little about anything else.
What actually distinguishes the three potential diagnoses? To have autism a child struggles with social delays, language delays, and repetitive or obsessive behaviors. To have Asperger Syndrome a child has social delays, later delays in communication and language usage (without early language delay), average or above intelligence, and obsessive behaviors. To have PDD-NOS means a child has social and communication issues, but does not fully meet the criteria for either of the other two diagnoses. If that all seems relatively arbitrary and confusing, that's because it is.
Right now, educational services are often more intense for children diagnosed with ‘autism' as opposed to Asperger's or PDD. This is in spite of the fact that, for any individual child, the recommendations for intervention should change based only on their specific abilities. If two children have the same cognitive skills and the same degree of social and communication difficulty, their educational requirements are similar - even if one had an early language delay and has been described with ‘high functioning autism' and the other did not and has been labeled with Asperger Syndrome. A child with average intelligence and mild impairment meeting criteria for PDD-NOS has the same likelihood of responding to intervention as one who has average intelligence, mild impairment and autism. A child with mild impairment and above average intelligence requires significantly different services than another child who has moderate impairment and cognitive delays - regardless of the specific diagnosis.
Condensing the terminology around autism into one diagnosis should therefore clarify the needs of individual children. Instead of focusing energy on which of the three ‘labels' is most accurate, the emphasis can be on individual strengths, developmental delays, and detailed planning. While making certain not to exclude children with milder levels of impairment, children with all degrees of autism will benefit from a clearer path to the intensive services required for them to thrive.