US Autism & Asperger Association Position to the Changes of the New DSM-5
US Autism & Asperger Association (USAAA) does not support the changes of the new Diagnostic and Statistical Manual of Mental Disorders (DSM-5) replacing the subgroups of the DSM-IV-TR Pervasive Developmental Disorders (Autistic Disorder, Asperger's Disorder, Rett's Disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified) with an all encompassing term, Autism Spectrum Disorder (ASD). In addition to the new ASD classification, USAAA vehemently opposes to the elimination of Asperger's Disorder (Asperger Syndrome).
Tom Insel, Director of the National Institute of Mental Health, says, "The weakness [of the DSM-5] is its lack of validity... Patients with mental disorders deserve better." "That is why NIMH will be re-orienting its research away from DSM categories"(1). This refutation is particularly powerful given that The National Institute of Mental Health (NIMH) publishes the DSM in partnership with the American Psychiatric Association (APA).
Furthermore, Dr. Alan Frances, MD, says, "DSM is not mandatory for most clinicians unless specifically required by their institutional settings. In fact, the ICD is the only classification system approved by HIPAA - not the DSM. As such, ICD codes meet all insurer-mandated and HIPAA coding requirements"(2).
The International Classification of Diseases (ICD) is the standard diagnostic tool for epidemiology, health management and clinical purposes. This includes the analysis of the general health situation of population groups. It is used to monitor the incidence and prevalence of diseases and other health problems (3). The ICD 11th Revision by the World Health Organization is due by 2015. In the ICD11 Beta Draft (4), the proposed revision under the subtitle of Neurodevelopmental disorders classification for the ICD-10-CM Pervasive developmental disorder, unspecified is the classification Autism spectrum disorders and related disorders with subgroups: Autism spectrum disorder; Childhood disintegrative disorder; Social reciprocity disorder [Asperger syndrome], and Rett syndrome. Therefore the IDC11 would retain subgroups in their classifications.
What is the impact of the new DSM-5?
First, there is a potential derailment of future research with historical data possibly becoming irrelevant, as different criteria and diagnostic categories may create incompatibilities maintaining consistency of past to future data. There may be a negative impact to phenotyping of ASD, particularly where environmental triggers are concerned. Look for a lack of urgency to conduct research resulting from drop in prevalence. Fewer research dollars could be assigned to prevent and treat ASDs. Therefore there will be less research to translate into treatment.
Second, there can be a failure of support. Federal benefit eligibility criteria is dependent on DSM for definition, such as Social Security, (New Disorder - Communication Disorder may not SSI eligible). State benefits may depend on DSM for definition of ASD for benefit eligibility. Benefits are likely to exclude the almost 40% of individuals that are estimated not meet DSM-5 criteria. Non-Governmental Organizational (NGO) support may change. Special Education Services could be indirectly impacted.
Third, services for individuals could be lost. Changes to diagnostic criteria have the potential to impact individuals receiving: Community-based services dependent on federal and/or state Developmental Disability (DD) definitions and funding; State-specific waivers that are dependent on DSM definition for services; Respite and education offered by non-governmental organizations; Private entities with specialized ASD programs such as specialized schools.
The following are statements prior to the implementation of the current DSM-5. The McPartland study (5) explains that the DSM-5 will "exclude a substantial portion of cognitively able individuals and those with ASDs other than autistic disorder…(this) rubric holds significant public health ramifications regarding service eligibility and compatibility of historical and future research." Dr. Allen Frances (6) says "The rates of Asperger's should drop precipitously under DSM 5 rules." Furthermore, Dr. Martha Herbert (7) says "Narrowing the definition of autism is a bad idea and narrows the opportunities to make significant inroads in helping children affected by this condition, their families and our nation."
The Definition of APA's Diagnostic and Statistical Manual of Mental Disorders (DSM) is the standard classification of mental disorders used by mental health professionals in the United States and contains a listing of diagnostic criteria for every psychiatric disorder recognized by the U.S. healthcare system. USAAA's comment regarding the definition of DSM is that autism and Asperger Syndrome are not psychiatric disorders.
There has been and will be much written about the new classifications in the DSM-5. But a parent of a child with autism sums it all up and says, "It is unfortunate for those with the conditions who will now fall outside the stricter diagnostic criteria."
There is also the question of how students reclassified under Social Communication Disorder or Disruptive Mood Dysregulation Disorder will continue receiving needed supports previous provided under an Asperger Syndrome condition. While educators, therapists, and others supporting these students will realize these individuals have the same challenges as before, the question is of how funding will be obtained for disabilities that are no longer considered part of the autism spectrum. Possibly these conditions will fine a "home" in the "Other Health Impairments" category. At the very least there will be a period of significant transition as individuals possibly lose out on supports they were previously given.
US Autism & Asperger Association will continue to support all individuals with Autism Spectrum Disorders and related disorders that are included in the ICD-10 under the Pervasive Developmental Disorder classification including Asperger Syndrome as well as comorbidities associated with ASDs as well as all individuals diagnosed with ASD from the DSM.
5 McPartland J C, Sensitivity and Specificity of Proposed DSV-5 Diagnostic Criteria for Autism Spectrum Disorder, JAACAP, Vol 51 No 4 Apr 2012
6 Dr. Allen Frances, MD, Professor Emeritus, Duke University, Chair of the DSM-IV
7 Martha Herbert, MD, PHD, pediatric neurologist at Harvard Medical School and Massachusetts General Hospital