For Immediate Release
Wednesday, April 2, 2014
Contact: Office of Autism Research Coordination/NIH
Phone: (301) 443-6040
IACC Issues Statement Regarding Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder (PDF – 115 KB)
Today, on World Autism Awareness Day 2014, the Interagency Autism Coordinating Committee (IACC) issued a statement regarding the scientific, practice, and policy implications of changes in the diagnostic criteria for Autism Spectrum Disorder (ASD) that were made in the most recent update of the Diagnostic and Statistical Manual of Mental Disorders (DSM).
In 2013, DSM was revised for the release of its fifth edition, consolidating previous autism-related diagnoses together into a single "autism spectrum disorder" diagnosis defined by two groups of symptoms—social communication impairments and restricted, repetitive behaviors—while including intellectual and language disabilities as additional labels that can be added onto a primary ASD diagnosis.1, 2 To address a variety of issues surrounding the implementation of the new criteria, the IACC assembled a planning group composed of IACC members and invited experts in the field to advise the IACC on this subject.3 Based on the group's findings, the IACC issued a statement, describing a range of scientific, practice, and policy implications that have arisen as a result of the changes in the DSM criteria, and providing recommendations for future research and implementation of the new criteria.
"The new criteria reflect advances in our understanding of ASD. At the same time, many in the community have raised questions about how the changes will affect people in the community," stated Dr. Geraldine Dawson, who chaired the DSM-5 planning group. "In this report, we considered how the diagnostic changes might affect individuals and families, as well as the future of the field, and tried to anticipate needs that will arise in the research, clinical practice, and services arenas. We hope this report will help address some of the concerns that have been raised and provide valuable guidance to individuals, families and professionals."
In the statement, the IACC acknowledged concerns about the potential for changes in the diagnostic criteria to impact access to services, urging that, "Any revision of the diagnostic criteria must be made with great care so as to not have the unintended consequence of reducing critical services aimed at improving the ability of persons with autism." The Committee recommended research to further assess the reliability and validity of the DSM-5 ASD criteria, and to understand the potential impact of these new criteria on diagnosis, prevalence estimates, and access to services.
The IACC also identified several key practice and policy issues that will be important for the community to consider as DSM-5 is implemented in real-world settings, especially with respect to services. As the new criteria have not yet been rigorously tested in young children, adults and ethnically-diverse populations, the Committee cautioned clinicians to pay special attention to individuals with obvious ASD symptoms who narrowly missed being diagnosed with ASD according to the new criteria. In addition, the Committee strongly emphasized that, "Services should be based on need rather than diagnosis; it would not be appropriate for a child to be denied ASD-specific services because he or she does not meet full DSM-5 criteria if a qualified clinician or educator determines that the child could benefit from those services."
With this statement and its list of recommendations for future research, practice and policy, the IACC endeavors to support implementation of DSM-5 with appropriate caution and rigor. Using these criteria to benefit people with ASD remains the primary goal, ensuring access to interventions, services and supports that will help people on the autism spectrum optimize their health and well-being, and meaningfully participate in all aspects of community life.
1 American Psychiatric Association. 2013. Diagnostic and Statistical Manual of Mental Health Disorders: DSM-5 (5th ed.). Washington, DC: American Psychiatric Publishing.
The IACC is a Federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research and services. The IACC provides advice to the U.S. Department of Health and Human Services on activities related to ASD, and works to improve coordination and communication across the Federal government and work in partnership with the autism community. The Committee is composed of officials from many different Federal agencies involved in autism research and services, as well as people with ASD, parents, advocates, and other members of the autism community. The documents and recommendations produced by the IACC reflect the views of the Committee as an independent advisory body and the expertise of the members of the Committee, but do not represent the views, official statements, policies or positions of the Federal government. For more information on the IACC, please visit: www.iacc.hhs.gov.