Minutes of the Interagency Autism Coordinating Committee (IACC) DSM-5 Planning Group Conference Call on June 24, 2013
The DSM-5 Planning Group of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Basic and Translational Research convened a teleconference on Monday, June 24, 2013, from 10:00 a.m. to 11:30 a.m.
In accordance with Public Law 92-463, the meeting was open to the public. Geraldine Dawson, Ph.D., Co-Chair, Subcommittee for Basic and Translational Research, and Chair, DSM-5 Planning Group, chaired the meeting.
Geraldine Dawson, Ph.D., Chair, Subcommittee for Basic and Translational Research, 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); John O'Brien, M.A., Centers for Medicare and Medicaid Services (CMS); Diane Paul, Ph.D., American Speech-Language-Hearing Association (ASHA); Catherine Rice, Ph.D., Centers for Disease Control and Prevention (CDC) (for Coleen Boyle, Ph.D., M.S. Hyg., CDC); Scott Robertson, M.H.C.I., The Autistic Self Advocacy Network (ASAN); John Robison, Self Advocate, Parent, and Author; Susan Swedo, M.D., NIMH; Amy Wetherby, Ph.D., Florida State University Autism Institute; Larry Wexler, Ed.D., U.S. Department of Education (ED)
Roll Call and Opening Remarks
The IACC DSM-5 Planning Group held a telephone conference on Monday, June 24, 2013 to discuss the effects of changes to the diagnostic criteria for autism spectrum disorder (ASD) in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5)1. IACC Executive Secretary Dr. Susan Daniels opened the call at 10:00 a.m. Planning Group Chair Dr. Geraldine Dawson welcomed the members and listening audience. She said that the purpose of this call was to identify specific actions with regard to how the IACC should address concerns about the changes in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition DSM-5. Dr. Daniels introduced four members of the Planning Group who are not members of the IACC, but were invited to serve as external consultants to the group because of their expertise on this topic: Laura Carpenter, Ph.D., Diane Paul, Ph.D., Susan Swedo, M.D., and Amy Wetherby, Ph.D. Dr. Carpenter is a clinical psychologist at the Medical University of South Carolina. She is currently working on a population-based epidemiologic study, in which researchers are comparing DSM-IV and DSM-5 definitions. Dr. Swedo chaired the DMS-5 Neurodevelopmental Disorders Work Group. Dr. Wetherby is the director of the Autism Institute at Florida State University and was a member of the DMS-5 Neurodevelopmental Disorders Work Group. Dr. Diane Paul is the director of Clinical Issues in Speech-Language Pathology at the American Speech-Language-Hearing Association (ASHA ), which is a national professional association for speech, language, and hearing specialists.
Dr. Dawson suggested that the Planning Group start by discussing the goals that were established during the first call on April 11, 2013. She outlined three sets of goals from that discussion. The first set centered on the potential effects of the changes on research. She said that the second set of goals centered on policy and practice issues. The third set of goals involved training.
Dr. Dawson asked if there were any other broad concerns that the group should consider. Mr. Scott Robertson asked if the addition of social communication disorder (SCD) as a new diagnosis had been included in the discussion of the goals. Dr. Dawson said that there was agreement that it would be important to consider SCD in each of these goals. Mr. Robertson also asked what form possible deliverables would take. In terms of research, Dr. Dawson said that the consensus on the last call was that the Planning Group would draft a list of priority research objectives. With regard to policy and practice, they would draft an IACC statement. Dr. Dawson said that items that were developed by the Planning Group would then go back to the full IACC for review.
Ms. Jan Crandy said that she had several concerns about to access to treatment. First, she expressed concern that the clinical specifiers and/or severity codes that accompany the new DSM-5 ASD criteria to provide more detailed information about etiology, co-morbidities (e.g. intellectual disability, language delay, medical conditions such as seizures), and pattern of onset, may allow states to "cherry pick" which individuals would have access to treatments. Specifically, she suggested that patients with more severe forms of ASD—and therefore potentially less likely to have good outcomes from treatment—would be less likely to have access to funding, in preference to less severely affected individuals. Ms. Crandy said that in Nevada, it has been decided already that children with the SCD diagnosis will not have access to state general funding; there are already too many wait-listed children, who meet the criteria for autism. Dr. Dawson said she believed that the IACC should provide guidance on this issue.
The Planning Group had a lengthy discussion about how to use the SCD diagnosis and what it meant for services and treatment. Dr. Wetherby said that the criteria for SCD were similar to those for the social communication domain for ASD. However, the SCD criteria captured a greater level of social communication problems. Typically these problems don't develop until a child is 4-5 years old. She added that the American Psychiatric Association (APA) DMS-5 Neurodevelopmental Disorders Work Group specifically highlighted this point in the text. Early intervention (that is from birth to 3 years) would not be an option for these children because it's not possible to diagnose SCD during this period of development. However, she noted that the repetitive behaviors and restricted interests associated with ASD might be apparent in the first few years of life.
Dr. Wetherby pointed out that currently the average age of autism diagnosis is 4 to 5 years, which means that the majority of children with ASD don't get early intervention. She said that in her opinion, the DSM-5 criteria for ASD will help to identify more children at an earlier stage because the criteria are clearer than in the past. In addition, more children will be able to get treatment during the early intervention window. Dr. Dawson mentioned an article 2 on the website of the Simons Foundation Autism Research Initiative (SFARI), in which Helen Tager-Flusberg, Ph.D., discusses several problems with the addition of the SCD. Dr. Tager-Flusberg is the Director of the Lab of Developmental Cognitive Neuroscience at Boston University. Dr. Swedo said the DSM-5 criteria are more descriptive of types of symptoms, rather than requirements of specific behaviors.
The Planning Group next discussed recommendations for DSM-5-related research objectives that the Planning Group might want to put forward for inclusion in the next iteration of the IACC Strategic Plan. Dr. Dawson said that the Planning Group previously had identified research needs that included the effects of DSM-5 on prevalence estimates and the development of reliable measurement tools. Dr. Carpenter said that there was also a need for more information on sensory differences, along with reliable assessment tools. Mr. John Robison raised the issue of the interaction between DSM-5 and the International Classification of Diseases (ICD) 9. Dr. Swedo said that the Neurodevelopmental Disorders Work Group worked with ICD-11 representatives to ensure consistency between the two with regard to ASD and SCD. Mr. Robison said that potentially there would be implications for services, if SCD was coded as a communication disorder, rather than as Pervasive Developmental Disorder (PDD). He asked if the IACC should take a position about the coding for SCD. Dr. Swedo said that it is essential that SCD should be a separate diagnosis and coded as a communication disorder. This question was discussed greatly by the DSM-5 Neurodevelopmental Disorders Work Group and their advisors throughout the development process, she said. They concluded that some children previously diagnosed with PDD-Not Otherwise Specified (PDD-NOS) would be better served by an SCD diagnosis because they would receive communication-specific services. The notes in the DSM-5 state that a child should not be diagnosed with SCD, if the child could be better diagnosed with ASD. Similarly, a child should not be diagnosed with ASD or Intellectual Disability, if he or she is better diagnosed with SCD or a specific learning disorder. Dr. Swedo said that in terms of billing codes, the clinician would have to decide whether to use the PDD-NOS code or the broader PDD code using ICD-9 or -10.
The Planning Group also discussed the differences between DSM-IV and DSM-5 in terms of prevalence of ASD. Dr. Swedo said that DSM-5 identified more children with ASD than DSM-IV, in addition to children with SCD in the field trials3. Mr. Robison asked when results from larger studies assessing the effects of the DSM-5 were expected. Dr. Dawson said that there are a number of ongoing studies. She said that Autism Speaks is funding two studies—one in Korea and one in South Carolina. In the first study, researchers have re-analyzed data from an earlier population-based study in South Korea4, comparing DSM-5 with DSM-IV. This study is currently under review. Autism Speaks is also funding a study at the Medical University of South Carolina. Dr. Carpenter said that they are using DSM-IV and DSM-5 to diagnose children recommended for direct assessment, following a population-based screening.
Dr. Ann Wagner joined the call briefly to describe the NIMH's Research Domain Criteria project (RDoC). Dr. Wagner is Chief of the Neurobehavioral Mechanisms of Mental Disorders Branch of NIMH. She said that RDoC represents a new way of classifying the psychopathology of mental disorders for research purposes. Dr. Wagner said that RDoC is not meant to be used for diagnosis. The intent of this program is to encourage researchers to look beyond traditional categories of mental disease and instead to examine specific dimensions or constructs within those categories, as the basis for understanding mental disorders. For example, instead of studying ASD, researchers would look at communication difficulties or repetitive behaviors across mental disorders. The hope is that this approach will inform mental health diagnoses in the future.
Wrap-up and Next Steps
It was decided that the Planning Group would draft a statement on DSM-5 and policy, practice, and training. In addition, the Planning Group would develop a list of draft research objectives related to DSM-5 that could be considered by the full committee for possible addition to the IACC Strategic Plan. Dr. Rice volunteered to take the lead in drafting research objectives related to the DSM-5 criteria for ASD. Dr. Dawson volunteered to take the lead in drafting a statement on the interpretation of DSM-5 ASD criteria and potential impacts on policy, practice, and training. Dr. Daniels said that any products developed by the Planning Group would have to be approved by the IACC and would become products of the IACC.
A Planning Group conference call was planned for August 2013 to discuss drafts of the policy, practice, and training statement and the draft research objectives.
Dr. Dawson thanked the participants and closed the call at 11:39 a.m.
These minutes were approved by the Planning Group on August 19, 2013.
I hereby certify that this meeting summary is accurate and complete.
Susan Daniels, Ph.D. /s/
Executive Secretary, Interagency Autism Coordinating Committee
1 American Psychiatric Association. 2013. Diagnostic and statistical manual of mental health disorders: DSM-5 (5th ed.). Washington, DC: American Psychiatric Publishing.
2 Tager-Flusberg, Helen. "Evidence weak for social communication disorder." SFARI Simons Foundation Autism Research Initiative. Simons Foundation, 30 May 2013. Web. 22 July 2013.
3 Huerta M, Bishop SL, Duncan A, Hus V, Lord C. Application of DSM-5 criteria for autism spectrum disorder to three samples of children with DSM-IV diagnoses of pervasive developmental disorders. Am J Psychiatry. 2012 Oct;169(10):1056-64. [PMID: 23032385]
4 Kim YS, Leventhal BL, Fombonne E, Laska E, Lim EC, Kim SJ, Kim YK, Song DH, Grinker RR. Prevalence of autism spectrum disorders in a total population sample. Am J Psychiatry. 2011 Sep;168(9):904-12. [PMID: 21558103]