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Calls to Action

They Hear You! NIH Seeks DSM-5 Input from Autism Community

Self-advocates, families and autism professionals invited to weigh in on research to explore effects of new diagnostic criteria for ASD
April 17, 2014

The National Institutes of Health is inviting input from self-advocates, family members, health professionals and scientists on research that can explore the effects of the new diagnostic criteria for autism spectrum disorder (ASD).

The new criteria came into effect last May, with the publication of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). The manual is widely used to diagnose mental health conditions in North America.

Even before the DSM-5 was published, the proposed changes sparked concerns that they would result in the loss of autism diagnoses and services. Early studies suggested that the DSM-5 criteria would reduce diagnoses on the less severely affected end of the autism spectrum. (See our DSM-5 Q&A here and our complete DSM-5 news coverage here.)

The DSM-5 states that all individuals who previously received an autism diagnosis under DSM-IV should keep that diagnosis. However, Autism Speaks has received reports of forced re-evaluations and lost services through its ongoing DSM-5 survey.

Last week, the federal Interagency Autism Coordinating Committee (IACC) issued a statement that, in part, echoed Autism Speaks’ concerns. The statement urged that care be taken to ensure that the DSM-5 criteria for autism do not result in “the unintended consequence of reducing critical services.”

Now the NIH is inviting public input regarding – but not limited to – suggestions for research that can address concerns about the DSM-5 changes. It expressly included self-advocates and family members in this call for input.

Responses to this official “Request for Information” will be accepted through May 12, 2014. Email with notice number NOT-HD-14-012 in the subject line. The full NIH announcement, including details and instructions about how to respond, can be found here.