The Asperger’s Association of New England, together with individuals who have Asperger Syndrome, their families, and involved professionals, strongly request that the American Psychiatric Association ensure the following:
1) DSM-5 criteria for autism do not disqualify significant numbers of individuals who now meet DSM-IV criteria for Asperger’s or related disorders from receiving or retaining a diagnosis of Autism Spectrum Disorder, and that
2) The diagnostic label of Asperger Disorder is retained as a sub-category within the diagnosis of Autism Spectrum Disorder, to help ensure clinical continuity and the established sense of community precious to already diagnosed individuals and families, and to maintain the hard won understanding of the label in the population at large.
Note to signatories: please include a comment noting your title, role and relevant experience (e.g. "I have Asperger Syndrome," "I'm the parent/spouse/sibling of a person with AS," "I'm Professor of Psychiatry at --- University, specializing in autism spectrum conditions," etc).
Why this issue matters: The American Psychiatric Association (APA) is changing the diagnostic criteria and terminology relating to autism. The revisions will be published next year in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the reference book used in the USA by clinicians, health insurers, educators and others who make decisions around diagnosis and the allocation of treatment resources and benefits.
The proposed criteria, at this stage in their development, have become highly controversial. There are alarming indications that individuals with Asperger Syndrome will be disproportionately excluded.
Although Asperger Syndrome is often referred to as the “high functioning” part of the spectrum, in truth it is not a mild condition. AS has a profound impact on many areas and aspects of life, including education, health, independence, employment, relationships and happiness.
Some of the difficulties with the proposed changes: The revisions are a worthwhile attempt to simplify and clarify the current diagnostic criteria for autism spectrum disorders. Nevertheless, the changes will eliminate the label Asperger Disorder (aka Asperger Syndrome), and risk disqualifying many individuals who are now regarded as having an autism spectrum disorder (including many with current Asperger's or PDD-NOS diagnoses).
An example of the research: A study at Louisiana State University (forthcoming in Research in Autism Spectrum Disorders) indicates that under the new diagnostic criteria, the prevalence of autism will decrease by one third. The children and adolescents who will be disqualified exhibit symptom severity similar to those who won’t. The authors conclude that the new definition of autism will likely have “economic and/or education consequences” for the disqualified children. Further analysis of the likely impact of the proposed changes is urgently needed.
Why the Asperger’s label should be retained within the new formulation of ASD: Over the past twenty years, as name recognition of Asperger’s has increased, we have seen how effectively it serves as a route to improved understanding and a sense of community. The label has itself helped organize coping strategies and supports. Many in the Asperger’s community are extremely alarmed at the prospect of losing aspects of our hard won identity.
Who we are: The Asperger’s Association of New England [www.aane.org] serves thousands of people with Asperger Syndrome, their families, and the professionals who work with them. Many of our members were part of the long struggle to have this condition formally recognized as a form of autism, which was legitimatized when Asperger’s Disorder (as it is medically termed) was finally incorporated into the DSM-IV in 1994.