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Minutes of the Interagency Autism Coordinating Committee (IACC) DSM-5 Planning Group Conference Call on August 21, 2013

The DSM-5 Planning Group of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Basic and Translational Research convened a conference call on Wednesday, August 21, 2013, from 11:00 a.m. to 1:00 p.m.

In accordance with Public Law 92-463, the meeting was open to the public. Geraldine Dawson, Ph.D., Chair, presided.

Participants:

Geraldine Dawson, Ph.D., Chair, Duke University; Susan Daniels, Ph.D., Executive Secretary, IACC, National Institute of Mental Health (NIMH); Laura Carpenter, Ph.D., Medical University of South Carolina; Jan Crandy, Nevada State Autism Treatment Assistance Program; Laura Kavanagh, M.P.P., Health Resources and Services Administration (HRSA); Catherine Rice, Ph.D., Centers for Disease Control and Prevention (CDC) (for Coleen Boyle, Ph.D., M.S. Hyg.); Scott Robertson, M.H.C.I., The Autistic Self Advocacy Network (ASAN); John Elder Robison, Self Advocate, Parent, and Author; Susan Swedo, M.D., NIMH; Amy Wetherby, Ph.D., Florida State University Autism Institute

Welcome and Introduction

The IACC DSM-5 Planning Group held a conference call on Wednesday, August 21, 2013 to discuss and refine a draft statement (PDF – 160 KB) regarding changes to the diagnostic criteria for autism spectrum disorder (ASD) in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5).1 Dr. Susan Daniels opened the call at 11:00 a.m. Dr. Daniels called roll, and the minutes from the June 24, 2013 meeting of DSM-5 Planning Group were approved. Planning Group Chair Dr. Geraldine Dawson welcomed the members and listening audience. Dr. Dawson noted that she had drafted the section of the draft document that addresses practice and policy and Dr. Cathy Rice had drafted the section on research implications.

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Group Discussion of DSM-5 Issues and Documents

1. Research

The Planning Group focused first on the research section of the document. Dr. Rice provided a brief overview of the main points of this section. The research needs fall into categories defined by three questions: "Who is being identified?"; "How are people identified with an ASD?"; and "What does it mean to be identified with ASD?" Within each of these questions are several more detailed questions. With regard to whether the DSM-5 criteria identify individuals previously diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) using the DSM-IV, Dr. Susan Swedo pointed out that it was not the intention of DSM-5 to identify all individuals with PDDs using the ASD criteria; thus, the question of whether certain groups would be less likely to be diagnosed using DSM-5 should be eliminated from the draft. She noted that an editorial error ("or" substituted for "and") inadvertently broadened the DSM-IV PDD-NOS criteria. According to the American Psychiatric Association, "instead of requiring 'impairment in social interaction and in verbal or nonverbal communication skills' (DSM-III-R, p. 39), DSM-IV states that the 'category should be used where there is a severe and pervasive impairment of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present' (DSM-IV, pp. 77-78)."2 Dr. Dawson said that they still needed to look at whether certain groups would be less likely to be diagnosed. Whether intended or not, PDD-NOS diagnoses had been made using DSM-IV based on the "or" wording. Dr. Swedo agreed and suggested a footnote to explain the definition of PDD under DSM-IV. She also said that replacing age criteria of "3 years" for symptom onset with "early childhood" – in the text "For example, removing a specific age cut-off for diagnosis was intended to improve the sensitivity of the DSM-IV criteria (which had required symptom onset by age 3 years). By DSM-5's more inclusive criterion, 'Symptoms must be present in the early developmental period but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life' may reduce diagnostic specificity by expanding the list of differential diagnoses that must be considered" ­ would not alter the early identification of patterns of children with an ASD. Dr. Swedo also suggested removing language about the distinction of Social Communication Disorder (SCD), ASD, and Pragmatic Language Disorder (PLD) because PLD was never a formally defined disorder in DSM. Dr. Rice said that PLD had been informally defined in the research literature and this should be mentioned.

Dr. Rice said that the "How are people identified with an ASD" question focuses on the need for screening and diagnostic instruments/modifications to reflect the DSM-5 criteria, changes in clinician and community conceptions of ASD, and the need for tools to assess SCD. She pointed out that the second edition of the Autism Diagnostic Observation Schedule (ADOS-2 This link exits the Interagency Autism Coordinating Committee Web site) does reflect DSM-5. She said whether and how screening tools should be updated to reflect DSM-5 are empirical questions. Group members discussed the role and use of these screening tools and questions related to DSM-5 criteria. Mr. Scott Robertson asked that adults be specified throughout the document because the DSM-5 changes affect individuals across the lifespan, not only children. Ms. Crandy raised the issue of how to take into account that the uptake of new criteria by clinicians and others is usually slow – how could research cope with simultaneous use of two sets of diagnostic criteria? Along the same lines, Dr. Laura Carpenter asked how the use of the new criteria would affect the design of clinical trials going forward. Dr. Dawson suggested adding text to encourage investigators to thoughtfully consider how to incorporate the new criteria into clinical trials or to integrate data with different criteria going forward. It would be important to document well the underlying basis for the diagnosis. Additional tools would be needed, as well. Dr. Rice said that research would be needed on how severity ratings in the DSM-5 would be used in practice by clinicians and service providers. It was reiterated that the severity ratings should not be used to deny services to any individual. The Planning Group discussed the intent of the severity specifiers in DSM-5, along with the potential for misuse.

2. Practice and Policy

The Planning Group then turned to the Dr. Dawson said that clinicians should be cautious in how they use the new criteria, as this relates to making services recommendations. She noted that there was very little prospective data to provide guidance. Dr. Dawson said that the most important point of the services and policy section was that services should match the needs of the child, regardless of the criteria used. Dr. Amy Wetherby said that more clarity was needed on early diagnosis (children younger than 4 years), possibly offering a provisional ASD diagnosis. They agreed that text to this effect would be a useful addition to the draft document and that the availability of a provisional ASD diagnosis for children aged 0-3 years would be very helpful. Mr. Robertson and Dr. Wetherby highlighted the need to encourage states to align their programs with DSM-5 and that a diagnosis of ASD implied that services were needed. Dr. Dawson said that she would draft text to capture this point. There was discussion about the fact that individuals with a current ASD diagnosis did not need to be re-evaluated from a clinical or services standpoint. In fact, they could not be denied services because of the overlap of diagnoses. The Group agreed that this was an important point to highlight.

Mr. John Elder Robison raised the issue of International Classification of Diseases (ICD) codes. He said that it was his understanding that for some individuals diagnosed with SCD, ICD-codes for PDD would be used. The implication would be that SCD was part of ASD – "autism light" – going forward, since PDD codes also apply in many cases of autism. He said that it was important to state this outright because of the implications for services. Children with an SCD diagnosis might be denied ASD-related services unless the IACC clarified this. Dr. Dawson said that there was a general bullet point in the draft document that addressed this issue: "It will be important for clinicians to develop a rationale and consistent approach in their use of ICD codes for children with an SCD diagnosis until there are more data on the validity of the SCD diagnosis." Dr. Wetherby noted that SCD might fall under language disorder ICD codes as well. Dr. Swedo added that the DSM-5 is quite clear that children with SCD do not have autism. However, treatments and services were still appropriate for these children. Rice noted that DSM-5 recommends ICD codes to use for these diagnoses. They agreed to add these codes to the text.

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Next Steps

Dr. Dawson suggested that Group members use the "track changes" feature in Microsoft Word to provide their suggested wording changes to the draft text documents. Members could also provide their proposed changes via e-mail if preferred. Dr. Dawson and Dr. Rice said that they would synthesize these suggestions into a revised document. Dr. Daniels asked that members send their changes to Dr. Dawson, Dr. Rice, and herself to facilitate the next round of revisions. The revised version would be ready to present at the IACC full Committee meeting on October 9, 2013 for their consideration.

Dr. Daniels said that as a follow up to the previous DSM-5 Planning group meeting, OARC had launched a new DSM-5 Resources webpage on the IACC website to provide helpful information to the public about the changes in the DSM and their possible implications. She mentioned that the American Psychiatry Association had kindly granted permission free of charge for the IACC to publicly post the ASD and SCD criteria to assist the committee in their efforts to help the community address important questions as they transition to the new criteria. Dr. Daniels asked the Group to review the new web page and send any suggestions for changes to her.

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Adjournment

Dr. Dawson thanked the participants and closed the call at 12:57 p.m.

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Certification

I hereby certify that this meeting summary is accurate and complete.

/Susan Daniels/
Susan Daniels, Ph.D.
Executive Secretary, Interagency Autism Coordinating Committee

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References

1 American Psychiatric Association. 2013. Diagnostic and statistical manual of mental health disorders: DSM-5 (5th ed.). Washington, DC: American Psychiatric Publishing.

2 American Psychiatric Association. 2000. Diagnostic and statistical manual of mental disorders: DSM-IV-TR (4th ed., text rev.). Washington, DC: American Psychiatric Publishing.

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