Minutes of the Interagency Autism Coordinating Committee (IACC) DSM-5 Planning Group Conference Call on April 11, 2013
The DSM-5 Planning Group (also referred to as "the Planning Group") of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Basic and Translational Research (also referred to as "the subcommittee") convened a conference call on Thursday, April 11, 2013, from 11:00 a.m. to 1:30 p.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., Co-Chair, Subcommittee for Basic and Translational Research, Autism Speaks; Susan Daniels, Ph.D., Executive Secretary IACC, National Institute of Mental Health (NIMH); Coleen Boyle, Ph.D., M.S., Centers for Disease Control and Prevention (CDC); Jan Crandy, Nevada State Autism Treatment Assistance Program; Laura Kavanagh, M.P.P., Health Resources and Services Administration (HRSA); John P. O'Brien, M.A., Centers for Medicare & Medicaid Services (CMS); Susan E. Swedo, M.D., Pediatrics and Developmental Neuroscience Branch, NIMH; 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 Thursday, April 11, 2013, to discuss the release of the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) --- expected at the annual meeting of the American Psychiatric Association (May 2013), and the potential effects of the updated definition of autism spectrum disorders (ASD) on the ASD community.
Dr. Susan Daniels opened the call at 11:00 a.m. and noted that Dr. Geraldine Dawson, Chair of the Planning Group, would lead the meeting. Dr. Dawson welcomed the group. She said that the group's purpose is to consider the impact of changes to the diagnostic criteria for autism spectrum disorders in the DSM-5 and to develop recommendations for how the IACC might address these issues. Dr. Dawson introduced Dr. Susan Swedo, who chaired the DSM-5 Neurodevelopmental Disorders Work Group that was convened by the American Psychiatric Association to develop the new DSM-5 ASD criteria. She said that the group would likely address possible impacts of the change in criteria on the tracking of prevalence of ASD, as well as the implications of the change for practice, services, training, and payment. She added that the IACC Basic and Translational Research (BTR) Subcommittee, the DMS-5 Planning Group's parent subcommittee, worked to ensure that a variety of perspectives were represented in the Planning Group. During this call, she said that they would try to define the questions/issues that they would like to address with regard to how DSM-5 changes will affect individuals with ASD, their families and the autism community, and also with regard to how these changes may affect scientific research. She said that the group should also discuss how the IACC should potentially address these issues --- for example, by writing a letter, recommendations, or additions to the IACC Strategic Plan. Finally, they should assign elements/issues to Planning Group members for follow up. Dr. Dawson noted that this process would likely involve more than one conference call.
Dr. Dawson started group discussion by saying, that in her opinion, many of the DSM-5 changes were very rational and could result in positive outcomes for the autism community. She raised two potential concerns from the community: how changes in diagnostic criteria will affect access to services (particularly with regard to the new diagnosis of social communication disorder) and how changes may impact the tracking of ASD prevalence. With regard to the social communication disorder (SCD) diagnosis, she asked whether the changes would result in clinicians recommending interventions that are appropriate for children with ASD or if a new set of interventions be developed to specifically target SCD. She continued, saying that such decision could potentially affect insurance coverage and access to special treatments or programs.
Dr. Coleen Boyle agreed that these two concerns --- effects on interventions/services/payment and effects on prevalence estimates --- were the key issues for the social committee to address. She also reviewed a list of more specific topics that she had developed. This included the effects of the new criteria on prevalence estimate trends and changes over time. How can two different characterization schemes (DSM-4 vs. DSM-5) be reconciled to look at trends in a meaningful way? Should SCD be included in these estimates or tracked separately? Dr. Boyle said that question was a topic of concern for the CDC Autism and Developmental Disabilities Monitoring (ADDM) Network, the program that provides national prevalence estimates for ASD based on data collected from multiple sites across the U.S. She and her colleagues at CDC are also interested in how existing diagnoses will change and how clinicians and those in the autism community will change the way they conceptualize ASD in response to the new definition. She said it would be useful to get a real-time view of how the DSM-5 changes affect community practice. She also asked how SCD would be diagnosed – are there reliable diagnostic instruments?
Dr. Dawson raised the issue of the removal of Asperger syndrome as a separate diagnosis, which has implications for self-identity, educational programs, and services for a subset of the community. Ms. Laura Kavanagh said that she and her colleagues at HRSA had questions about the proposed changes in how to evaluate severity, in terms of both clinical practice and epidemiology. She added that families are concerned about the impact of the changes on services.
Dr. Wexler said that it was difficult for him and his colleagues at the U.S. Department of Education (ED) to know what their concerns with the changes because it's unclear what the results will be. The Department of Education currently does not require a medical diagnosis of ASD for services under the Individuals with Disabilities Education Act (IDEA). He said that for IDEA, it is primarily left to individual schools to make the diagnosis of autism for school services. He noted that the number of children with ASD has roughly doubled in recent year, based on ED data.
Dr. Dawson asked Dr. Swedo if the DSM-5 neurodevelopmental disorders work group discussed the policy implications inherent in the proposed diagnostic changes. Also, did the work group develop recommendations with regard to policy issues? She also asked if it was it part of the American Psychiatric Association's (APA) role to make recommendations regarding services, she asked.
Dr. Swedo reminded the Planning Group that the DSM-5 is a clinical manual. While psychologists, social workers, and educators use the DSM-5 to make diagnoses, medical codes for ASD used for statistical analysis and reimbursement purposes come from the International Statistical Classification of Diseases and Related Health Problems,9th Revision (ICD-9) codes. In the United States, these codes have not changed. ICD-11 is in development internationally. Dr. Swedo said that the APA's DSM-5 neurodevelopmental disorders work group has been working closely with the ICD-11 neurodevelopmental work group. She said that it is expected that ICD-11 will also have some diagnostic changes for neurodevelopmental disorders. She noted that the ICD-9 codes do not breakout specific diagnoses under neurodevelopmental disorders (e.g. pervasive developmental disorders).
Dr. Swedo said that there is an understanding that DSM-5 is actually DSM-5.0, with the understanding that manual will be revised as DSM-5.1, etc., as new data justify changes. She added that the hope is that the DSM will become more responsive to changes emerging from research. The working group found that the diagnostic category "autism spectrum disorders" was overwhelmingly used in the literature (particularly epidemiology), as opposed to more specific diagnostic subcategories, she said. With the recommended changes, the working group was catching up to the field.
With regard to SCD, she said that this diagnosis was always envisioned as a separate disorder, not part of the autism spectrum. The APA work group worked to ensure that early childhood history could be taken into account for the restrictive/repetitive behaviors domain. She said that the data available to date show that individuals, who otherwise meet criteria for ASD in the broadest diagnostic sense, but who do not exhibit repetitive behaviors/restricted interests at the present, do have an early childhood history of these behaviors.
She said that in field trials for ASD at two sites, the working group was able to get a sense of how DSM-IV diagnoses would map onto the DSM-5 diagnoses. Additional studies on this are needed because these trials were relatively small. She said that 95% of children who met the DSM-IV criteria for ASD, Asperger syndrome, or pervasive developmental disorders – not otherwise specified (PDD-NOS) would also meet ASD criteria under DSM-5. She also noted that there were a few children, who had not met DSM-IV criteria but who did meet DSM-5 criteria. Roughly 5% of children in the field trials met the criteria for SCD. The working group believes that SCD and ASD should be completely separate diagnoses. However, she acknowledged that this might pose some methodological limitations for assigning diagnoses based on school records because these only document current symptomology. The early history is very important for the history of ASD, she said.
The working group has highlighted material about symptom severity and service access in the text immediately below the diagnostic criteria. In essence, any individual who meets the ASD criteria should receive appropriate services. She said that severity levels 1, 2, and 3 do not translate to "mild", "moderate", and "severe"; these should not be used as treatment targets or a reason for denying services to individuals. Instead, the levels are intended to help clinicians get a sense of an individual's impairments. Dr. Swedo said that although ASD includes a wide spectrum, DSM-5 allows a number of specifiers that can provide a very specific picture not only of an individual's impairments but also strengths. Specifiers also can include other comorbid medical or psychiatric conditions, e.g. attention deficit hyperactivity disorder (ADHD).
Dr. Dawson asked if an individual would be classified as having ASD if she or he did not have repetitive/restrictive behaviors but otherwise met the ASD criteria. Dr. Swedo answered that these individuals would not meet the ASD criteria. However, she said that the historical data suggests that individuals do not meet the other three criteria without these behaviors. Dr. Dawson observed that it was theoretically possible for an individual to have social communication impairments and also one sensory issue or repetitive behavior but still not be considered as having ASD using the DSM-5. Dr. Swedo agreed that this was true, but added that under DSM-5 an individual with these characteristics could be classified with ASD if he or she had an early history of all of the necessary components. She added that there is an important need for screening/diagnostic instruments to define and identify early repetitive behaviors.
Dr. Dawson said that while it is very reassuring that 95% of those who fall on the autism spectrum using DSM-IV also fall on the spectrum using DSM-5, the Planning Group was particularly concerned about the remaining children. Dr. Dawson also expressed concern about previous and ongoing research on early interventions that included individuals who were considered to have PDD-NOS under DSM-IV but who met the SCD criteria using the DSM-5. She said that the data indicate that these children responded better to early interventions. She asked if these children would continue to receive early interventions designed for children with ASD. Dr. Swedo said that the work group reviewed video interviews with children, who would fall into that 5%. These children typically had another condition, such as ADHD, but with some social skill deficits. Under DSM-IV, they were considered to fall into the PDD-NOS category. Dr. Swedo said that these children were never actually part of the true autism spectrum. In other words, it is not appropriate to say that these children would be excluded from the ASD category because it's not clear that they ever really were. Dr. Dawson reiterated her concern about services for this group.
Dr. Boyle asked how it might be possible to get a real-time understanding of how the new recommendations were being used in the community. Dr. Wexler said that from the education perspective, it will be challenging to use the new criteria to develop prevalence estimates from educational data. Children from birth to 3 years (IDEA Part C – the Program for Infants and Toddlers with Disabilities) are broadly classified as developmentally delayed and States have a lot of flexibility about what services to provide. Likewise many children aged 3-5 years (IDEA Section 619 program – Preschool Grants) are labeled as developmentally delayed, as opposed to a specific disability category.
Dr. Dawson asked if clinicians might be more inclined to use the SCD diagnosis among children birth-3 years, given that it may be easier for parents to hear about their child. She asked Dr. Wexler how this situation might affect a child's ability to participate in a classroom situation that is designed for children with ASD. Would these children be included or excluded from this learning setting? Dr. Wexler answered that children are not entitled to special services from birth to 3 years. Some states have very narrow definitions of eligibility for IDEA Part C services. Some states may include "at risk" as a category. He said that in these states, he did not think that a SCD diagnosis would make much difference in terms of access to educational services. However, in other states that adhered more strictly to ED categories, a SCD diagnosis would pose a big problem in terms of these services because there is no category for SCD. If a child had a SCD diagnosis but also could be considered on the autism spectrum, they would qualify for these services, but if they only had a SCD diagnosis, there is a possibly they would not qualify for services. He said that it is very hard to predict how this will play out in the states.
Dr. Wexler said that the 2-3 year period is when most children become eligible for these services due to language delays. A child with language delays or speech/language disorder is eligible for services under all ED programs. He added that many children with autism are included in the speech/language problem area. Dr. Dawson asked if a child could receive an SCD diagnosis under DSM-5 without a language delay. Dr. Swedo answered that children do not need to have a language delay for this category. However, autism does have to be ruled out to receive this diagnosis. SCD is basically pragmatic language disorder with or without language delays. Dr. Dawson asked Dr. Wexler if children with pragmatic language disorder, who did not also have a language delay, would qualify for services in the birth to 3 years group. He said that a language delay was not needed in order to qualify for services. He said a large number of children receiving services have articulation problems, reiterating that it depends on the state. Dr. Dawson proposed that the Planning Group could make a recommendation that children with social communication impairment —pragmatic language problems—would qualify for services from birth to 3 years. Dr. Wexler said that the child described by Dr. Dawson would fall into a language disorder category and qualify for services, though state-to-state variability could be a problem. He recommended contacting the American Speech-Language-Hearing Association (ASHA) because this group sets the national standards for these professionals. Dr. Dawson said that it would be important to clarify that SCD is a pragmatic language disorder. Dr. Wexler reiterated that it would be important to work with ASHA.
Dr. Dawson asked Dr. Wexler about the possible effects of SCD vs. ASD diagnoses in older groups of children, in terms of access to services. Dr. Wexler said that in terms of the law, the child needs services to fit his or her needs. However, where the children receive services is a different question. He said that there is a bias in education toward including children with disabilities in a general education setting, as opposed to special classes. It's hard to say where these children will be served though because there are so many variables. In addition, parents who advocate strongly for their child generally get the services that they request, he said. The types of services that are available are another variable. Schools are obligated to provide a free and appropriate public education. Appropriate education is defined to mean that the child gets educational benefit from special programs, Dr. Wexler said. Different school districts have very different resources and yet still meet the requirements of the law.
Dr. Dawson asked Dr. Swedo why the working group used the term 'social communication disorder' instead of 'pragmatic language disorder'. Dr. Swedo said that pragmatic language disorder does not include the nonverbal component. They hoped that the SCD diagnosis would pick up minimally-verbal or low-functioning individuals with more profound impairment in communicating in social situations. Dr. Dawson asked what types of services would be appropriate for this type of child. Dr. Swedo said that it depends on the impairments of an individual. She noted that this diagnosis encompasses pragmatic language disorder; the text discusses the relationship of pragmatic language disorder to SCD. In addition, the title of the disorder is listed as 'Social (Pragmatic) Communication Disorder'. Dr. Swedo said that the criteria focus equally on the nonverbal communication as on verbal abilities.
Dr. Boyle noted the need for the development of diagnostic instruments that will capture historical information regarding repetitive behaviors in early childhood, as this is now an essential component of accurate diagnosis. She asked Dr. Swedo if there are any tools that are available or that are in development. Dr. Swedo said that there will be an open call for the development of this type of instrument. She said that one of the frustrations has been that the most commonly used research measures—the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview, Revised (ADI-R)—are not widely available or translatable to clinicians because of copyright protections. She noted that assessment by an expert clinician remains the gold standard of diagnosis. Instrument development is crucial though. She said that IACC could play a role in ensuring uniformity of such instruments across disciplines.
Dr. Boyle asked for more explanation regarding the severity ratings. Dr. Swedo said that the APA work group made a special effort to convey that individuals with ASD with lower-severity impairment in the different domains still have impairment above a clinical threshold. She stressed that the work group felt that this was a very important point. However, the APA, the IACC, and the autism community will have to work to translate this concept into practice. Dr. Swedo said that the severity ratings were designed specifically to denote the severity of ASD in each of the individual domains rather than for ASD overall. This was done purposely to make it more difficult to anyone to misuse the three levels of severity to classify people with ASD into high- and low- functioning or other broad categories that may be misleading. Dr. Boyle asked how this change would affect prevalence research, especially with regard to parent report of severity. She suggested that it might be useful to include the parent perspective of ASD severity.
Dr. Kavanagh asked how the changes --- particularly with regard to severity scores --- would be introduced to and implemented by clinicians. Dr. Swedo said that the working group intended the severity ratings to be specifiers, not subtypes. It is left to the clinician's discretion to use the specifiers. Dr. Boyle suggested that IACC could add a question to the IACC Strategic Plan regarding the precision of the severity ratings. Dr. Dawson asked if any organization would provide education on the DSM-5 changes. Dr. Swedo said that there will be a master course on the DSM-5 at the annual meeting of the APA but she did not know about other organizations. Dr. Swedo said that the diagnostic changes would be encompassed with the ADOS with the use of a different scoring algorithm. The ADI-R can also be used with the changes. Dr. Boyle asked if the ADOS could be used to make the diagnosis of SCD. Dr. Swedo said that the APA work group had not addressed this question. However, she reminded the Planning Group that SCD is not part of the autism spectrum under the DSM-5 changes.
Planning Group Goals and Wrap-up
Dr. Dawson suggested that the DSM-5 Planning Group could develop a list of recommendations of research that is needed regarding the DSM-5 diagnostic changes. This could take the form of a new objective(s) on the strategic plan. Dr. Kavanagh and Dr. Boyle agreed that this was an appropriate product. Dr. Daniels suggested that if there were several ideas, it might be best to create multiple objectives rather than group everything into one objective to facilitate future tracking of progress on achieving the objective.
Dr. Dawson asked if the Planning Group had suggestions for a course of action to address policy and practice issues related to DSM-5. Dr. Boyle said that it might be useful to identify a list of needs for the implementation of the new criteria and training for clinicians. Dr. Dawson asked Dr. Daniels what form something like this could take. Dr. Daniels answered that one option would be for the IACC to develop a statement on policy and practice issues that could be disseminated to the community. Dr. Boyle asked if the Dr. Swedo and the APA working group had addressed the issue of implementation needs. Dr. Swedo said that there are some models from other disorders upon which the IACC could draw. She added that it would help with the transition to have clinical data on how the two fit together or overlap. Dr. Boyle also mentioned that it would be important to know the impact of the changes on dual diagnoses, such as children with ADHD and social skills deficits.
Dr. Dawson suggested preparing one set of recommendations to address training of clinicians and clarifications of the implementation and interpretation of the new criteria. (e.g. severity ratings should not be used to exclude children from services) Dr. Kavanagh and Dr. Boyle agreed that these would be useful.
Dr. Dawson asked if there were other individuals (not on IACC), who would be good resources for the Planning Group. Dr. Boyle suggested Laura Carpenter, Ph.D. (Associate Professor of Developmental-Behavioral Pediatrics at the Medical College of South Carolina), Catherine Lord, Ph.D. (Professor of Psychology at the Weill Cornell Medical College at Columbia University College of Physicians and Surgeons), and Amy Wetherby, Ph.D. (Director of the Autism Institute in the College of Medicine at Florida State University). Dr. Dawson suggested a representative from ASHA. Dr. Swedo recommended inviting Stacey Shumway, Ph.D. (Assistant Professor of Speech-Language Pathology at the University of Utah). After discussion among the Planning Group members, Dr. Dawson asked Dr. Daniels to invite Dr. Wetherby, a representative from ASHA, and Dr. Carpenter to join the Planning Group and participate in the next conference call.
Dr. Dawson noted that she hoped that on the next call that more of the Planning Group members would be able to participate. Dr. Daniels and Dr. Dawson said that they would be in touch with the group in the coming weeks about future activities.
Dr. Dawson thanked the participants and closed the call at 12:34 p.m.
These minutes were approved by the Planning Group on June 24, 2013.
I hereby certify that this meeting summary is accurate and complete.
Geraldine Dawson, Ph.D.
Basic and Translational Research Subcommittee Co-Chair