Nearly a year after new diagnostic criteria for autism took effect, the National Institutes of Health is asking everyone from families to health experts to weigh in on the changes.

The NIH has issued a request for information urging stakeholders to speak up about implications they are seeing stemming from the revised Diagnostic and Statistical Manual of Mental Disorders.

“In an effort to further align its research priorities with the needs of individuals with ASD and their families, the NIH is soliciting further input about the implications of changes in ASD diagnostic criteria for autism research, as well as input into the potential for research to inform concerns and questions related to clinical practice and policy,” the NIH said in the request.

Last year, a fifth edition of the DSM was published which included significant modifications to the definition of autism. Specifically, the new manual included an updated list of traits needed for a diagnosis and folded autistic disorder, Asperger’s syndrome, childhood disintegrative disorder and pervasive developmental disorder, not otherwise specified under the umbrella term of “autism spectrum disorder” with clinicians indicating a level of severity.

The changes have been contentious, prompting widespread concern among those in the autism community that the update could lead some to lose their diagnosis and, with it, needed services. To mitigate such worries, the revised DSM includes a note that those with a “well-established DSM-IV diagnosis” on the spectrum should retain the classification.

Just this month, however, the federal Interagency Autism Coordinating Committee pinpointed several areas of concern related to the changes. The NIH cited the advisory panel’s worries in issuing its request for information from the public.

The NIH is accepting responses through May 12.

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.