As Executive Director of the Asperger's Association of New England (AANE) in Watertown, Massachusetts, I, too, am extremely worried that the proposed revised DSM-5 criteria could prevent those with Asperger's Disorder and related Autism Spectrum Disorders (ASDs) from receiving needed services. I am particularly concerned that the diagnosis of Asperger's Disorder may disappear entirely from the DSM.
When AANE was founded in 1996, very few people had heard of Asperger's. I met hundreds of families who were floundering, unable to find help because services designed to help people with classic Autism were very different from interventions needed for youth and adults with Asperger's. Many people with Asperger's were receiving incorrect and misleading diagnoses such as Schizophrenia, Bipolar Disorder, or Oppositional Defiant Disorder.
Over the past sixteen years, as name recognition of Asperger's has increased, I have seen how an accurate Asperger's diagnostic label can transform lives. The name "Asperger Syndrome" has given thousands of individuals and families access to tolerant understanding, interventions, and supports tailored to their unique needs. People have come together under the banner of Asperger's, forming a community where they can share experiences, resources, and strategies, and find inspiration and hope. Now, the impending elimination in DSM-5 of the Asperger's label, and the probability that a swath of individuals formerly seen by the clinical world as having Asperger's will no longer meet new, unfairly stringent criteria is creating an enormous fear of losing much of what we have worked so hard over 20 years to gain.
While Asperger's is sometimes called "mild" autism, there is nothing "mild" about the impact Asperger's has on a person's life. Individuals with Asperger's and related profiles are not less autistic than those with more classic profiles. Rather, they are differently autistic. Though they may have strong verbal skills and average to high overall intelligence, most face significant challenges in social interaction, basic organizational abilities, and daily living skills. Frequently, they are unable to find and keep employment or live independently. Many withdraw from all social interaction, and suffer from crippling anxiety or depression. The dichotomy of "high-functioning" and "low-functioning" autism is a false one.
More research is urgently needed to ensure that no one with Asperger's or any other autism spectrum disorder will be excluded getting a diagnosis due to the revised DSM-5 criteria. Why not retain the Asperger's diagnosis, which has already proven its worth, in the DSM-5? Autism is a broad, complex, multi-dimensional disorder, not always easily quantified and exactly codified. All of the ASD's always have a profound impact on the lives of individuals and families. No one should be left out in the cold.
Dania Jekel, MSW
Asperger's Association of New England