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July 19, 2011 IACC Meeting Summary

July 21, 2011

The Interagency Autism Coordinating Committee (IACC) met on Tuesday, July 19, at the Bethesda Marriott Pooks Hill in Bethesda, Md.

IACC Chair and NIMH Director Thomas Insel, M.D. opened the IACC’s business by highlighting research developments since the last IACC meeting. Dr. Insel identified many studies of interest, including the following subjects:

  • Detecting, Studying, and Treating Autism Early: The One-Year Well-Baby Check-Up Approach published in the Journal of Pediatrics which showed promise as a simple mechanism to detect autism at 1 year;
  • Disrupted neural synchronization in toddlers published in Neuron in which results support theories of this disruption;
  • The prevalence of autism in South Korea in which the study showed that autism may be more common than previously thought.  A summary of this study was published in Nature by Catherine Lord.
  • Prevalence and characteristicsof adults with ASD living in the community in England, as published in Arch General Psychiatry, which showed the prevalence of adults living in the community to be similar to that of children and that they tend to be socially disadvantaged;
  • Trends in autism prevalence 1997-2008;
  • Converging models for autism, published in Nature, which demonstrates differences in transcriptome organization between autistic and normal brain by gene co-expression network analysis; the largest twin study ever conducted, published in American Psychiatry;
  • Anti-depressant use during pregnancy; and
  • Meta-analysis of perinatal and neo-natal risk factors. 

Dr. Insel also provided an update on the National Database for Autism Research (NDAR).  NDAR has more than 106,000 subjects in the database.

Matthew W. State, M.D., Ph.D., Donald J. Cohen Associate Professor, Yale Child Study Center, followed with a presentation on autism genetics.  He presented on why genetics provides an important pathway to biological mechanisms, such as synaptic plasticity with respect to autism, which can ultimately lead to treatments.  Dr. State highlighted a recent study on heritability which concluded that there is a much higher concordance of non-identical twins than previously understood.  He emphasized that the gene and environmental research fields are complementary: genetics direct a path to molecular and cellular mechanisms; environmental research can help identify and modify potential risks.

Dr. State discussed the technological revolution that is allowing for more robust data sets that are vital to a genetically and phenotypically heterogeneous disorder.  Dr. State’s research undertook a genome-wide analysis of rare copy-number variation (CNV) in 1124 autism spectrum disorder (ASD) families.  The data suggests that rare mutations contribute to ASD risk as does copy number variations.  There was also strong evidence that girls are protected from this.  This replication of a previous study on unaffected and affected siblings is a significant milestone.  The next steps in this area include a prospective cohort study and combining neuro-imaging with genetic studies.

Randall Carpenter, M.D., President and Chief Executive Officer, Seaside Therapeutics spoke to the IACC about the convergence of scientific discoveries enabling targeted therapeutics for individuals with ASD.  Dr. Carpenter said his company is focusing on single-gene disorders with a high prevalence of autism, such as fragile X syndrome.  He reported that animal research has converged on altered synaptic functions as a link to the disorder.  The company’s approach to its therapeutics is based on optimal synaptic function requiring optimal protein synthesis.  Excessive protein synthesis disrupts synaptic function.  By treating the excessive protein synthesis (mGluR5), they hope to treat the underlying brain function.  Seaside has a Fragile X therapeutic in Phase 3 clinical trials and autism therapeutic in Phase 2 clinical trials.  Dr. Carpenter highlighted the basic research done in the field, particularly that done by Seaside co-founder Mark Baer, Ph.D., as the indispensible element that has allowed them to reach this phase of development in therapeutics.

Autism Speaks’ chief science officer and IACC member Geraldine Dawson, Ph.D. reported on a recently published paper: “Mortality in Individuals With Autism, With and Without Epilepsy.” The analysis of new data from the California State Department of Developmental Services is consistent with past reports showing that there is a higher than expected rate of mortality in individuals with autism and epilepsy than autism alone.  The data showed that the cause of death was listed as unknown for one-third of the individuals.  Accurate, complete and accessible records on cause of death are necessary not just for brain research, but also for understanding risk factors that contribute to early death in individuals with autism spectrum disorders. Various national health care and state developmental disability agency initiatives to reduce risk of mortality are described in the paper.

During the afternoon session, Paul Shattuck, Ph.D., Assistant Professor George Warren Brown School of Social Work, Washington University, St. Louis gave a presentation on ASD Outcomes in Adulthood.  Dr. Shattuck co-authored a study published in the February issue of the Archives of Pediatric and Adolescent Medicine which examined patterns of service use and related outcomes as teens with autism age into young adulthood.  The sample was derived from a Department of Education 10-year longitudinal study and was comprised of 920 youths enrolled in the special education autism category at the start of data collection in May 2001.  The research found that service use dropped considerably for the cohort after high-school.  Self-reported speech therapy use went from approximately 75% during the high school years to 9% following it.  Dr. Shattuck said there is a very strong correlation between social economic context and the level of intellectual disability and the use of services.

Coleen Boyle, Ph.D. Director, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention and IACC Member presented on paper published in Pediatrics (June 2011), “Trends in the Prevalence of Developmental Disabilities in US Children 1997-2008.”  The objective of the study was to assess trends in prevalence of developmental disabilities in US children and in selected populations for the 12-year period from 1997-2008.  Data was derived for children aged 3 to 17 years from the 1997-2008 National Health Interview Surveys, which are ongoing nationally representative samples of US households. Parent-reported diagnoses of the following were included: attention deficit hyperactivity disorder; intellectual disability; cerebral palsy; autism; seizures; stuttering or stammering; moderate to profound hearing loss; blindness; learning disorders; and/or other developmental delays. 

The study found that boys had a higher prevalence overall and for a number of select disabilities compared with girls. Hispanic children had the lowest prevalence for a number of disabilities compared with non-Hispanic white and black children. Low income and public health insurance were associated with a higher prevalence of many disabilities. Prevalence of any developmental disability increased from 12.84% to 15.04% over 12 years. Autism, attention deficit hyperactivity disorder, and other developmental delays increased, whereas hearing loss showed a significant decline. These trends were found in all of the sociodemographic subgroups, except for autism in non-Hispanic black children.

Ari Ne'eman, Vice Chair, Engagement, National Council on Disability and IACC Member, presented on bullying and students with disabilities.  Mr. Ne’eman cited a U.S. Department of Education (DOE, 2010) study that identified possible consequences of bullying to include the following: lowered academic achievement and aspirations, increased anxiety, loss of self-esteem and confidence, depression and post-traumatic stress, deterioration in physical health, self-harm and suicidal thinking, suicide, feelings of alienation, absenteeism and other negative impacts, both educational and health related. 

Mr. Ne’eman also referenced a literature review which included the following findings: students with visible and non-visible disabilities are subject to more bullying than non-disabled peers (Carter and Spencer, 2006). Bullying is frequently a direct result of a student’s disability (Whitney, Smith & Thompson, 1994).  Students with disabilities are disproportionately likely to face peer rejection, a significant risk factor for victimization (Martlew & Hodson, 1991; Whitney, et al, 1994; and Hodges and Perry, 1996).

Mr. Ne’eman provided the committee with an overview of bullying and existing disability and special education law.  He concluded with policy recommendations that included increased federal research on bullying; improved data collection; expanded use of the IEP process; and requiring parental notification.  Finally, as part of this segment, Ms. Julia Bascom shared with the committee her experience with bullying as someone on the autism spectrum.

The IACC next heard perspectives on the diverse needs in the autism community.  Ms. Heidi Scheer shared a video of her severely affected son and talked about the challenges associated with his level of disability.  Ms. Scheer said that her son on one occasion wandered into a busy street and was nearly hit by a car before being found by police.  Mr. Scott Robertson, Chairman of the Board and Co-Founder, Autistic Self Advocacy Network, shared his perspective on the needs of adults.  He has served in advisory capacities for the Commonwealth of Pennsylvania.  Mr. Robertson articulated the need for the developmental disability community to also focus on working with the private sector in addition to government.

Alison Singer, M.B.A. President, Autism Science Foundation, led an update from the Safety Subcommittee on ASD-related wandering.  This included a report from Paul A. Law, M.D., M.P.H. Director of Medical Informatics, Kennedy Krieger Institute, on the Interactive Autism Network (IAN) survey on elopement and wandering.  Recognizing the urgent need for information and intervention, the Autism Research Institute, the Autism Science Foundation, Autism Speaks, and the Global Autism Collaboration partnered with the IAN to create a national survey on elopement in ASD. So far, more than 800 families of children with ASDs from across the U.S. have completed the Elopement and Wandering Questionnaire launched on March 29, 2011. In this report, Dr. Law shared some preliminary findings, including the fact that nearly half of children with ASD between the ages of 4 and 10 engage in this behavior.

Coleen Boyle, Ph.D. Director, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention and IACC Member updated the Committee on the successful effort to secure an ICD-9 code for wandering.  The code for “wandering in diseases classified elsewhere” – V40.31 – will be implemented on October 1, 2011. 

Ellen Blackwell, M.S.W., Centers for Medicare & Medicaid Services and IACC Member, and Lee Grossman, Co-Chair Services Subcommittee, provided a Services Subcommittee update.  The Subcommittee is planning a services town hall meeting on September 15-16 at the Bethesda Marriott Pooks Hill.  The meeting will seek the input of parents and self-advocates and will also have an agenda which includes speakers on the following issues: self-determination; the criminal justice system; recreational support; workforce support; and the services roadmap.

The committee also received a report on the joint activities of the Safety and Services Subcommittee and its May 19 joint subcommittee meeting on Seclusion and Restraints.  The meeting resulted in a discussion draft of a letter that would be sent to Secretary Sebelius on the subject.  The letter would express concern about the inappropriate use of seclusion and restraint in a variety of settings that receive Federal funding, including institutional facilities such as hospitals and residential treatment facilities for children, schools, prisons, and home and community-based settings.  It was discussed that the Department of Education has serious reservations about the letter as it is working on guidance documents on the subject to be released in the fall.  The committee decided that it needed the input of the Department of Education before it could vote on the letter.  A call will be scheduled within the next month to gain this perspective and vote on the whether to send the letter.

Susan A. Daniels, Ph.D., Acting Director, Office of Autism Research and Coordination, (OARC) reported that OARC has requested the top 5 advances in autism research from the members for its mid-year update of the 2011 Summary of Advances.  Additionally, OARC has commenced its data request for the 2010 portfolio analysis of public and private funders of autism research.

Finally, Dr. Insel gave the committee a legislative update on efforts in Congress to reauthorize the Combating Autism Act, key provisions of which sunset on September 30, 2011.  The House has held a legislative hearing on H.R. 2005 and the Senate has a markup scheduled for August 3 on S. 1094.  Each bill extends the existing law for three years.  Dr. Insel reported that unless the law is reauthorized, the Committee cannot plan to meet again after September 30.

The full IACC is not scheduled to meet again owing to the statutory sunset of its authority in the Combating Autism Act.