Request for Information (RFI): Impact of DSM-5 Changes to Diagnostic Criteria for Autism Spectrum Disorders (ASD) on Research and Services

Notice Number: NOT-HD-14-012

Key Dates
Release Date: April 14, 2014
Response Date: May 12, 2014

Related Announcements
None

Issued by
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
National Institute on Deafness and Other Communication Disorders (NIDCD)
National Institute of Environmental Health Sciences (NIEHS)
National Institute of Mental Health (NIMH)
National Institute of Neurological Disorders and Stroke (NINDS)

Purpose

The purpose of this request for information is to seek input from the scientific community, health professionals, self-advocates and patient advocates about the research implications of recent changes to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) diagnostic criteria for Autism Spectrum Disorders (ASD).

Background

With the publication of DSM-5 in May 2013, the American Psychiatric Association’s official diagnostic criteria for ASD were changed to reflect current scientific knowledge and attempt to refine the criteria to reflect the wide range of symptom expression within this diagnostic category.  Specifically, the category of Pervasive Developmental Disorder (PDD), which had been in use since DSM-III was published in 1980, was removed along with its subtypes (Autistic Disorder, Asperger Disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder, Not Otherwise Specified).  The DSM-5 describes one category, Autism Spectrum Disorder (ASD), with specific criteria related to deficits in social communication/interaction, and restricted and/or repetitive patterns of behavior.  There is a metric for describing severity and specifying accompanying developmental and medical conditions.

Subsequent to the publication of the DSM-5, the federal Interagency Autism Coordinating Committee (IACC) released a “Statement from the Interagency Autism Coordinating Committee Regarding Scientific, Practice and Policy Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder (DSM-5)”.  The IACC is a federal advisory committee, composed of federal and public members, that coordinates ASD-related activities within the United States Federal Government.  The committee identified several ways in which the change in diagnostic criteria might affect access to diagnostic, treatment, and other services.  The statement identifies several research questions related to the implementation of the new ASD criteria, including reliability and validity of the criteria and severity ratings, an evaluation of whether some individuals will see a change in their diagnosis, whether there is a need for new or revised screening and diagnostic tools and processes, and potential implications for the ASD community support and access to services.

The National Institutes of Health (NIH) have invested significantly ($192 million in fiscal year 2012) in biomedical, treatment and services research related to ASD.  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.

Information Requested

The NIH is requesting additional input from the scientific community, health professionals, self-advocates and patient advocates about the research implications of recent changes to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) diagnostic criteria for Autism Spectrum Disorders (ASD).   NIH invites specific and detailed input regarding, but not limited to, the topics below:

  • How to address direct implications of changes in DSM-5 criteria for ASD on research methodology, including participant selection and characterization, measurement tools, data analysis, and interpretation of results. 
  • Specific methods by which questions or concerns about the impact of these changes can be resolved within the context of research investigations/studies.
  • Specific research questions and methodologies that could inform questions or concerns about the impact of changes in DSM-5 criteria for ASD on clinical practice and policy.

Responses

Responses to this RFI are voluntary.  Results may be shared internally with scientific working groups convened by NIH, as appropriate.  Proprietary, classified, confidential, or sensitive information should not be included in your response.  The Government reserves the right to use any non-proprietary technical information in summaries of the state of the science and any resultant solicitation(s).  The NIH may use the information gathered to develop grant, contract, or other funding priorities and initiatives.

This RFI is for information and planning purposes only and should not be construed as a solicitation or as an obligation on the part of the Federal Government, the National Institutes of Health (NIH), or individual NIH Institutes or Centers.  The NIH does not intend to make any awards based on responses to this RFI or pay for the preparation of any information submitted or for the Government’s use of such information.

Responses will be accepted through May 12, 2014.  Electronic responses should be addressed to DSM-5@mail.nih.gov .  Please include the Notice number NOT-HD-14-012 in the subject line.  

Inquiries

Please direct all inquiries to:

Sujata Bardhan, PhD
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Email: DSM-5@mail.nih.gov

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