Minutes of the Interagency Autism Coordinating Committee (IACC) Meeting on July 19, 2011
The Interagency Autism Coordinating Committee (IACC, also referred to as "the committee") convened a meeting on Tuesday, July 19, 2011 from 10:00 a.m. to 5:00 p.m. at the Bethesda Marriott Pooks Hill in Bethesda, Maryland.
In accordance with Public Law 92-463, the meeting was open to the public. Thomas R. Insel, M.D., Director, National Institute of Mental Health, chaired the meeting.
Thomas Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH); Susan Daniels, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), NIMH; James Battey, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD); Linda Birnbaum, Ph.D., National Institute of Environmental Health Sciences (NIEHS); Ellen Blackwell, M.S.W., Centers for Medicare & Medicaid Services (CMS); Coleen Boyle, Ph.D., Centers for Disease Control and Prevention (CDC); Henry Claypool, HHS Office on Disability; Geraldine Dawson, Ph.D., Autism Speaks; Chris DeGraw,* M.D., M.P.H., Health Resources and Services Administration (HRSA) (representing Peter van Dyck, M.D., M.P.H.); Lee Grossman, Advance Enterprises, LLC; Alan Guttmacher,* M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD); Larke Huang,* Ph.D., Substance Abuse and Mental Health Services Administration (SAMHSA); Yvette Janvier, M.D., Children's Specialized Hospital; Walter Koroshetz, M.D., National Institute of Neurological Disorders and Stroke; Sharon Lewis, Administration for Children and Families (ACF); Christine McKee, J.D.; Ari Ne'eman, Autistic Self Advocacy Network (ASAN); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Denise Resnik, Southwest Autism Research & Resource Center (SARRC); Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF); Marjorie Solomon, Ph.D., M.B.A., University of California, Davis and M.I.N.D. Institute
*Note: Attended by phone.
Call to Order, Opening Remarks, and Approval of the Minutes
The meeting opened with introductions from the committee members. Ms. Blackwell's adult son Robert, who is on the spectrum, was present for a short time during the beginning of the meeting. The committee then approved the minutes from their previous meeting on April 30, 2011 with a clarification to a comment by Mr. Ari Ne'eman.
Thomas Insel, M.D., Director of the National Institute of Mental Health (NIMH) and IACC Chair
Dr. Insel then gave a brief overview of select scientific advances in autism research that had taken place since they had last met in April. He noted that the field was advancing so rapidly it would be impossible to review every recent finding. Dr. Insel summarized several notable findings related to diagnosis including a pattern of brain asynchrony in toddlers with ASD that might serve as a biomarker for autism1 and a study demonstrating the utility of a 5-minute, parent-completed screening survey in a real-world setting. 2 Dr. Geri Dawson noted that the survey screened broadly for language and cognitive delay; parents must follow-up with a specialist for a specific diagnosis and a significant number do not. She noted that a phone call from the physician after a positive screen greatly increases the number of people who seek a follow-up referral. Dr. Insel then discussed a recent study of autism prevalence among children in South Korea that showed a 2.6 percent rate of ASD,3 markedly higher than the rate in the U.S. The study screened almost all children in the country between the ages of 7 and 12 (55,000 children) and found that two-thirds of the children who screened positive for ASD had never received a diagnosis. Dr. Coleen Boyle clarified that although the U.S. prevalence studies did not screen the entire population of children, they too were considered to be "population-based."
Dr. Insel then spoke about a study in the U.K. that suggests autism is equally common in all stages of life, affecting about 1 percent of the population even into old age.4 This finding runs contrary to the idea that the majority of people with ASD are under the age of 18 and raises questions about the role that ascertainment bias plays in the recent increase in autism rates. He previewed findings about the ten-year trends in the rates of different developmental disabilities in the U.S. The lead author, Dr. Boyle, spoke more about the paper later in the afternoon. In advances related to understanding the underlying biology of ASD, Dr. Insel referenced an essay on converging models of ASD neurobiology5 and two papers exploring converging molecular pathways in the brain through the study of RNA6 and the interaction between proteins respectively.7
He then gave a brief overview of the recent study of identical and fraternal twins that suggests a greater role of environmental factors than previously thought.8 Researchers found that the rate of autism in fraternal twins was greater than that of siblings even though they share a similar amount of DNA (approximately 50 percent). This suggests that a shared environment, particularly in the womb, may contribute to ASD risk. The study relied on complex statistical modeling to estimate risk from genetic and environmental factors. One environmental factor that may affect autism risk is antidepressant use during pregnancy. A study of 88,000 births found that mothers who used selective serotonin reuptake inhibitors during the first trimester were four times more likely to have a child on the spectrum.9 Dr. Walter Koroshetz cautioned that underlying depression itself may contribute to ASD risk and noted that the complications from untreated depression can be severe.
Dr. Insel then reviewed a meta-analysis of risk factors during pregnancy and soon after birth that indicated that low birth weight, respiratory distress, and serious medical issues during the first month of life increased the rates of autism.10 Other studies suggested that mothers who did not take prenatal vitamins and those who conceived in winter were slightly more likely to have children with ASD.11, 12 He directed the committee's attention to several papers in Neuron on rare genetic variations in autism 13, 14, 15 and highlighted a paper on unmet need and problems accessing medical services for children with autism.16 Dr. Insel also spoke about a study of cognitive function in the elderly with autism that showed a different pattern of cognitive loss than that of the general population.17 A study of sheltered workshops found that they did not enhance employment and a survey of college students with ASD detailed their health needs.18, 19 Ms. Blackwell noted that the Centers for Medicare & Medicaid Services does not support the use of sheltered workshops and Mr. Ne'eman noted that legislation currently being considered in the Senate emphasizes competitive integrated employment over the sheltered workshop model, which he called "obsolete."
In closing, Dr. Insel noted that the National Database for Autism Research (NDAR) had expanded to 106,000 records and 62,000 global unique identifiers (GUIDs). He said he hoped it would eventually become a "one-stop shop" for ASD researchers.20 He reminded the committee that the Combating Autism Act was set to sunset on September 30, 3011. Proposed legislation is making its way through Congress but that if it were not passed, this would be the last meeting of the committee. The committee had a more extensive discussion of the legislation and the future of the IACC during the afternoon. Dr. Dawson focused on the successes of the committee and stated her support for the reauthorization of the Combating Autism Act.
Matthew W. State, M.D., Ph.D., Donald J. Cohen Associate Professor at the Yale Child Study Center
Dr. Matthew State then gave a broad overview of recent advances in understanding the genetics of autism. He explained that genetic discovery creates a better understanding of the disorder at a molecular and cellular level and has transformed how autism is viewed. Autism was previously seen as static and unchangeable condition, but research has now shown that the brain undergoes dynamic processes that constantly remodel neurons and synapses in the brain (referred to as synaptic plasticity) in response to developmental and environmental cues, and that due to this ability of the brain to adapt and respond, autism also can change over time. Eventually, researchers may be able to develop targeted treatments based on their understanding of the mechanisms at work. Studying genetics also helps determine population risks and can play a role in clinical diagnosis. It also allows researchers to disentangle the complex interaction between genes and environment in autism.
Dr. State then described the concept of heritability, which is the proportion of the disorder that can be explained by genetic variation. He clarified that if a disorder is 80 percent heritable it means that by studying twins and using mathematical modeling, researchers have determined that genetics account for 80 percent of risk. It does not mean that 80 percent of people have the genetic risk factor and 20 percent do not. Inheritance is a slightly different concept referring to the transmission of genetic information from generation to generation.
Previous studies have estimated that ASD had a 70 to 90 percent heritability based on the number of identical twins who shared the disorder.21, 22, 23 The recent Hallmayer study is notable because it gauges the genetic contribution to be significantly lower at about 40 percent.24 Dr. State noted that the study had a large sample size with 202 pairs of twins and that they used careful direct clinical diagnosis for confirmation. He noted however that a low response rate (17 percent of the 1,156 sets of twins that could have participated) could have affected their estimates as twins with certain characteristics may have been less likely to participate in the study. The study found a similar rate of autism concordance in identical twins as in the past but a significantly higher rate of concordance among fraternal twins which led to the conclusion that genetics played a lesser role than previously thought. Dr. State cautioned against playing into the false dichotomy of genes versus environment and explained that understanding the relationship between genes and environment was critical to tackling any complex disorder. Genetic studies and environmental studies are complementary with each providing different types of insights into an important problem.
Dr. State explained that individuals with ASD are genetically heterogeneous and that increasing the number of people participating in studies has been advantageous, as well as trying to better characterize subgroups within the disorder. He said that his lab had been particularly interested in looking for rare genetic mutations so that they could understand molecular or cellular mechanisms that could reveal common neurobiology among ASD. He suggested that future studies of gene-environment interaction should study entire populations and move away from clinically defined samples.
Dr. State briefly reviewed the basics of genetic variation, noting that any "autism gene" was not a new gene but rather a known gene with a variation or "mutation" in its DNA structure. All people are about 99 percent genetically similar and scientists must study the 1 percent of variation to understand individual risk for specific disorders. Genetic variation can occur at the level of the individual constituents of DNA called base pairs or there can be errors in larger chunks of DNA called copy number variations (CNVs). Copy number variations can result from structural changes such as deletions (less than the normal number of copies) or duplications (more than the normal number of copies) of relatively large sections of DNA. Genetic variation is a normal part of the human genome and it differentiates each person from another.
Dr. State talked about the rapid growth in the technology that sequences DNA. In 1997, researchers would typically select 150 to 400 base pairs to look for genetic variation out of the body's collection of 3 billion base pairs. Now with advanced microarrays, researchers can sequence an individual's genome in its entirety for about $4,000.
Currently, it is known that individually rare mutations contribute to autism risk. While many rare mutations have been implicated most relate to the synapse and help to understand the pathophysiology of ASD. Large de novo (spontaneously arising) mutations have been found in 6 to 10 percent of people with classic autism. In Dr. State's recent study, his lab was able to replicate findings that implicate a region of chromosome 16 in ASD. Notably, a region on chromosome 7 that causes Williams syndrome when absent increases the risk for ASD when it is duplicated.25 Dr. State noted that the 22 genes in the region must have a profound influence on modulating social behavior. Overall, the study found about 300 de novo CNVs that were associated with ASD.
Dr. State said that understanding how initial genetic vulnerability interacts with environment will be critical to understanding the development of ASD. He recommended undertaking replication studies to confirm previously identified risk variants and continuing to study potential common variants. He also noted that they could begin to undertake prospective studies of individuals with similar genetic risk factors such as duplication at 16p11. Ultimately, it will be necessary to study multiple genetic variations contributing simultaneously and to combine genetic information with other sources such as epigenetic information and neuroimaging. While there was still much work to do, Dr. State said there had been substantial progress understanding the molecular mechanisms that would move the field forward.
Questions from the Committee
Dr. Battey asked whether it was possible females are protected against copy number variants and Dr. State speculated that the gender difference in autism was not going to be explained simply by genetic factors but protective factors stemming from the entire system. Dr. Yvette Janvier noted her work on multiplex families with Dr. Arnold Levine and asked whether CNVs were more common in older parents and how the rate of CNVs had increased in the general population. Dr. State said that this underscored the importance of conducting genetic studies with whole populations and said that it wasn't the presence but rather the position of CNVs that appeared to contribute. In his studies, he had not seen an increased rate of de novo CNVs in older parents. Dr. Marjorie Solomon asked how autism researchers could work together to untangle disorders with genetic overlap like schizophrenia and Dr. State encouraged collaboration through data repositories like the Psychiatric Genetics Consortium.
Convergence of Scientific Discoveries Enables Targeted Therapeutics for Individuals with Autism Spectrum Disorders
Randall L. Carpenter, M.D., President and Chief Executive Officer of Seaside Therapeutics
Dr. Randy Carpenter, President and Chief Executive Officer at Seaside therapeutics, presented on the company's work developing therapeutics for autism. Before starting, he noted that his younger sister has an intellectual disability and could not live independently. Dr. Carpenter and Dr. Mark Bear started Seaside Therapeutics six years ago and the company recently started Phase 3 clinical trials of drugs for autism spectrum disorder and fragile X syndrome.26 He noted that autism is an extremely heterogeneous disorder and the causes for most cases remain unknown. However, he said there was cause for optimism because researchers have been able to study synaptic functioning using animal models of genetic disorders often associated with ASD, such as fragile X. New insight into synaptic functioning in the face of these mutations has led to promising therapies that are now being tested. Dr. Carpenter noted that the early diagnosis of autism and intellectual disability allow therapy to be started at a time when the brain is most plastic. Encouragingly, animal studies have suggested that people can experience substantial improvement even when treatment is started in adulthood.
Dr. Carpenter noted that 15 to 30 percent of people with fragile X syndrome also have autism, making it the most common known genetic cause of the disorder. It is also the most common inherited cause of intellectual disability, the result of a mutation in a single gene. Dr. Carpenter noted that their work built upon the advances of many others, including the identification of the fragile X gene and the discovery that the brain can be modified by experience. Importantly, Dr. Bear discovered that people with fragile X lack a protein that is critical to learning.27 Lack of this protein causes an imbalance of the neurotransmitter glutamate in the brain, which plays a role in discriminating important information from unimportant noise. 28 Seaside therapeutics has developed treatments that reduce the amount of glutamate by stopping the release of the neurotransmitter or inhibiting the signaling from a specific glutamate receptor (metabotropic glutamate receptor or mGluR).29 Dr. Carpenter said the treatments were exciting because they were targeting the fundamental molecular cause of autism rather than simply treating resulting symptoms.
Three drugs are currently undergoing clinical trials and The New York Times recently published reports of positive results from the pharmaceutical company Novartis.30 Dr. Bear's research also indicates that a drug that successfully treats fragile X would likely have a positive impact on other single-gene disorders with high rates of autism such as tuberous sclerosis complex, neurofibromatosis, and PTEN hamartoma. It may also be beneficial for idiopathic autism because therapies developed for one mutation may benefit those with other mutations in the same pathway.31
Because of the heterogeneity of autism, Dr. Carpenter said it would be important to identify biomarkers to predict treatment response. To realize the potential of personalized medicine, researchers will also have to identify pharmacodynamic markers to facilitate the optimal drug dose.
Ms. Resnik noted that the Southwest Autism Research & Resource Center had participated in the trials and said that Seaside Pharmaceutical's work emphasized the importance of private sector contributions to the IACC's mission.
Mortality in Autism and Epilepsy
Geraldine Dawson, Ph.D., Chief Science Officer of Autism Speaks and IACC Member
Dr. Dawson then spoke about research supported by Autism Speaks that found that people with autism who have epilepsy have a higher mortality risk than those with autism alone.32 The study used data from the California State Department of Developmental Services and found that epilepsy increased mortality rate approximately seven-fold in people with autism (increasing from approximately .7 percent to 6 percent.) Epilepsy commonly co-occurs with autism and about one third of the brain specimens donated to the Autism Tissue Program are from individuals with epilepsy. Longitudinal studies have shown that autism increases mortality rates about six-fold.33
She noted that the California data set often lacked information about cause of death with 27 percent dying of unknown causes. Better records are needed to understand and prevent factors that may contribute to early death in people with ASD. She said that she hoped that studies such as these could inform prevention efforts.
Questions from the Committee
Dr. Dawson was asked why the mortality rate of typically developing individuals with epilepsy was significantly higher than that of people with ASD and epilepsy. Committee members speculated that because people with ASD often developed epilepsy as adults the cumulative death rate would be lower. Dr. Walter Koroshetz said that the National Institute on Neurological Disorders and Stroke was working to understand sudden unexplained death in children with epilepsy and Dr. Dawson said that Autism Speaks was working closely with epilepsy advocacy organizations.
When asked by Ms. Lyn Redwood whether the study had included samples from the University of Maryland Brain and Tissue Bank, she said that it most likely had but that she would have to verify this. Dr. Yvette said that in her clinical experience children with epilepsy in conjunction with other severe health conditions who were under 24-hour care could seem stable and then die suddenly in the night without warning. Ms. Blackwell noted that the California data set was very large because it included everyone in the state. Dr. Birnbaum noted that the anti-epileptic valproic acid is known to increase the risk of autism when used by pregnant mothers, which presents a potential issue for therapy.
Dr. Dan Burns spoke about work by the Autism Trust USA to establish a Center of Excellence in Austin, Texas. The center would integrate housing, health care and wellness, and vocational training for adults with autism.34 The center would also promote community outreach and provide training for professionals working with people on the spectrum. Residents would have the opportunity to give back to the community through agricultural and retail activities. Currently, the Autism Trust USA is in the planning and fund-raising phase of the project.
Mr. Jim Moody recited several recent news headlines that illustrated how overwhelmed many families have become with the intense level of care needed for their loved ones with ASD. He cited cases of children being abandoned, being injured after wandering away, and even being killed by a parent. He urged that more must be done to address medical care and insurance coverage, target research on prevention and treatment, provide services and supports, and address a host of safety issues including seclusion and restraint, bullying, and wandering. Mr. Moody asked the IACC to recommend creating a Presidential Task Force on autism and noted that the National Autism Association was strongly committed to the reauthorization of the Combating Autism Act.
ASD Outcomes in Adulthood
Paul T. Shattuck, M.S., M.S.S.W., Ph.D., Assistant Professor at the George Warren Brown School of Social Work, Washington University, St. Louis
Dr. Paul Shattuck then spoke about findings from his research examining service use and outcomes for adults with ASD. He said that 50,000 adolescents with autism are expected to turn 18 this year and will face the post-high school "services cliff" that results from losing their federal entitlement to supports and services. He noted a startling lack of research about supporting adults with ASD – of the 10,000 articles on autism written between 2000 and 2010, only 23 studies focused on supports for adults to succeed in work, school, and social participation. Many of these studies had 6 or fewer participants. He noted that while the vast majority of the lifespan is spent in adulthood, the bulk of research is directed at very young children. He questioned what fundamental discoveries about the nature of ASD are being missed as a result of neglecting to study the trajectory of ASD across the lifespan.
He noted that because of the current economic downturn more children were living in poverty and that socio-economic status had clear implications for the developmental trajectory of young adults. The mission of Dr. Shattuck's work is to build an evidence base to help improve systems of care for youths and adults with autism, showing special concern for socially disadvantaged individuals. He is trying to describe the patterns of service use and access, examine outcomes for young adults with ASD, and examine disparities and inequities in service access. His data comes from a longitudinal study launched by the Department of Education in 2000. Dr. Shattuck collected about 400 parent interviews from parents of young adults ages 13 to 16 who were enrolled in special education classes with an autism diagnosis. A combination of youth and parent interviews were used to gather information about postsecondary work and school outcomes.35
The survey found that two or more years after graduating from high school, 79 percent of people were living with their parents, 21 percent were nonverbal, and 9 percent were uninsured. Dr. Shattuck reported that about 42 percent had received case management after graduating high school, 35 percent had received mental health services, 24 percent had received medical services, and 9 percent had received speech therapy. Almost 40 percent of the individuals in the study had not received any type of services after leaving school. This is a significant decrease from services received while in school, particularly for speech therapy which dropped from 75 percent to less than 10 percent. Race and income also impacted service receipt: African-Americans were 3 times less likely to be receiving services than whites and families making less than $25,000 annually were six times less likely to receive services than higher-earning families.
Dr. Shattuck then presented some preliminary findings about the number of individuals with ASD who were completely disengaged after leaving school, having no job, job training, or continuing education. He found that about 33 percent of people with ASD fall into this category, a higher percentage than any other form of impairment or disability. The length of disengagement is discouraging as well, he said, with people on the spectrum appearing to flounder for the first three years after leaving high school. Based on race, black and Hispanic young adults are much more likely to be disengaged from postsecondary work or job opportunities, with nearly two-thirds of Hispanics and one-half of blacks lacking any type of engagement after high school. Household income predicted levels of disengagement with young adults from the lowest income families the most likely to be disengaged.
Individuals who were the most severely affected were also the least likely to receive postsecondary education or job training; 60 percent of those with the lowest ability level were disengaged. Nonverbal status also predicted a lack of engagement with 60 percent disengaged. Lack of engagement among youth with low income is not driven solely by their tendency to have lower functional ability. A nonverbal youth from a low-income family (>$25,000 annually) is twice as likely to be disengaged as one from a more affluent family (>$75,000 annually) and more than 12 times more likely than a verbal child from an upper-income family.
Dr. Shattuck reviewed some of the limitations of his study that included the lack of ASD-specific measures, reliance on parent report, and that the study was limited to young adults who were enrolled in the special education category of autism. Strengths of the study include the size and diversity of the sample, the longitudinal design, and the generalizability of findings. The researchers will go on to analyze the individuals' service use as they reach ages 21 to 25 and they will use a technique called a propensity matching score to determine the effect of high school services on later outcomes. Dr. Shattuck concluded by emphasizing the importance of social context – racial minorities from poor families have a fundamentally different experience during transition and young adulthood. Policy also matters and there is often a mismatch between eligibility requirements and the unique needs of youths with ASD, particularly with regards to speech therapy. He stated the need for a transdisciplinary research agenda to examine autism across the lifespan and speed the pace of discovery, dissemination, and translation.
Questions from the Committee
Dr. Dawson referenced the work of Dr. Marsha Seltzer who found that finding employment for people with autism who did not have an intellectual disability was actually harder than for those who did because of the lack of supports for the former.36 Dr. Shattuck said that they were looking at a more socioeconomically diverse group and that while more services might be available for the more profoundly affected individuals it was not translating into positive outcomes. Mr. Ne'eman asked about the scales used to determine ability levels and was told that they were a product of summing questions in the survey. He then noted that the outcomes for nonverbal young adults who come from middle to high-income families is better than the outcomes for verbal people who come from low income families. He noted that social context is a powerful influence that is not often brought up. Dr. Shattuck said that it would be interesting to address how socioeconomic risk predicts trajectory of development over time.
Ms. Singer asked what aspects of being poor might affect the severity of autism and Mr. Shattuck put forward two schools of thought: Some would argue that being poor is partly biological. People with behavior problems have difficulty getting high-paying jobs, leading them to be poor. They in turn will give birth to another generation with behavior problems who will continue the cycle. Another line of reasoning is based on the theory of social causation. Children who do not have access to books and toys or a safe environment to play lack enrichment, which leads them to fare worse in school and have difficulty getting and holding jobs later. It is impossible what was truly at work without being able look back at the individuals in the study at a very young age.
Dr. Janvier asked about the age of people with ASD when they leave high school and Dr. Shattuck confirmed that many stay until they are 20 or 21 years of age. Dr. Solomon asked about their plans to use propensity scoring to measure outcome and Dr. Shattuck said that they were focused on identifying changes that could make a big impact later like ensuring that all students have a transition plan in place when they leave. Ms. Blackwell asked if they had looked at public versus private insurance and Dr. Shattuck said that it had not proven to be a predictor of outcome. Dr. Insel noted that Oregon had been forced to hold a lottery for Medicaid enrollment creating a randomized trial of service use and outcomes. He asked if such a study could be done using their data and Dr. Shattuck it would be possible during the coming stage of their research.
Trends in the Prevalence of Developmental Disabilities in US Children, 1997-2008
Coleen Boyle, Ph.D., Director of the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention and IACC Member
Dr. Boyle spoke about a CDC study on the trends in the prevalence of developmental disorders in U.S. children.37 She noted that increased survival rates for preterm infants and those with birth defects and genetic disorders may have increased the number of children with developmental disabilities, while prenatal care and preventive practices like vaccination may have reduced the prevalence. Increased parental age and increased awareness and diagnosis may also impact the overall figures.
The study analyzed data from children ages 3 to 17 from 1997 – 2008 and found that about 14 percent of U.S. children have a developmental disability. The data was from the National Center for Health Statistic's annual National Health Interview Survey and included a total of about 120,000 children. Interviews were conducted in-person and received about a 90 percent response rate. Attention deficit-hyperactivity disorder (ADHD) and learning disabilities were most prevalent and boys were much more likely to be affected than girls. Overall, the number of children with developmental disabilities showed a 17 percent increase from the previous decade. ADHD increased by 33 percent, affecting about 7 percent of the population and autism ballooned by 289 percent compared to the previous ten years. It is estimated to affect about .5 percent of the population.
Dr. Boyle noted that some strengths of the study included the national sampling, the 12-year time frame, and the extremely high response rate for the study. Some of the challenges include the issue of parent report and whether the condition endures. A previous study found that a significant portion of the parents reported that their children had once been diagnosed with autism but no longer had the disorder.38 She finished by highlighting the need for continued monitoring to track changes in autism and other developmental disorders.
Dr. Boyle clarified that although the National Health Interview was conducted prior to 1990, it did not include questions about autism for comparison.
Bullying and Students with Disabilities
Ari Ne'eman, Vice Chair, Engagement, National Council on Disability and IACC Member
Mr. Ari Ne'eman, representing the National Council on Disability (NCD), presented the organization's paper on the issue of bullying.39 The paper had also been presented at the White House Conference on Bullying Prevention in March 2011.40 A review of the literature revealed that students with disabilities are disproportionately likely to be bullied and that most parents are not informed of the bullying by the school district. There have been federal policy efforts to inform schools of their responsibility to report bullying of a disabled student; the Department of Education's Office of Civil Rights as well as the Office of Special Education and Rehabilitative Services have written "Dear Colleague" letters to school districts and state education authorities.41 Mr. Ne'eman noted a substantial gap – schools are only required to report the bullying if it directly relates to the student's disability. However, as stated in the white paper, the NCD feels that schools have an obligation to intercede even when the bullying relates to things outside the scope of the student's disability.
Mr. Ne'eman noted that several pieces of legislation are implicated including the Americans with Disabilities Act, Section 504, and the rights granted under the Individuals with Disabilities Education Act. The white paper included seven policy recommendations including that federal research on bullying incorporate students with disabilities, that parental notification of bullying be mandatory, and that the role of the Individual Education Plan (IEP) be expanded to protect students from bullying and harassment. The NCD also recommends broadening data collection to include information about individuals with disabilities, addressing workplace bullying, and fighting hate crimes. They also recommend supplementing existing nondiscrimination laws with explicit private right of action to hold schools accountable for persistent bullying.
Questions from the Committee
Ms. Singer asked about best practice guidelines for schools to address bullying and Mr. Ne'eman said that more research needed to be done although the Olweus interventions out of Scandinavia showed promise.42 He said that the NCD was addressing bullying as a legal issue to spark response from school districts. Dr. Janvier noted that anti-bullying policies seem to heighten awareness and she had noticed more students and parents discussing bullying with her but that it does not appear to actually prevent bullying. Mr. Ne'eman agreed, citing that 92 percent of families with children on the spectrum had discussed bullying with a school official although only 68 percent report that the bullying was then adequately addressed. Ms. Resnik asked if NCD had come across research on peer supports for bullying and Mr. Ne'eman said they had not although it was a relevant issue for future research. Dr. Solomon recommended Fred Frankel's book Good Friends Are Hard to Find, which addresses practices that children and their parents can use to help prevent bullying. Dr. Dawson said that Autism Speaks was supporting a project examining factors that led to higher risk of bullying for individuals with autism and factors that can reduce risk. Ms. Blackwell asked if any states had examples of innovative bullying legislation and Mr. Ne'eman said that although most states had passed anti-bullying laws, they have had limited impact.
Bullying and Students with Disabilities
Ms. Julia Bascom then talked about her personal experiences being bullied as a woman on the spectrum. She noted that in the end she was able to cope by understanding that the people who bullied her were wrong and that she would be able to endure.
Diverse Needs in the Autism Community: The Needs of Children with Severe Autism
Ms. Heidi Scheer shared her personally experience living with a school-age son with severe autism. She showed two videos illustrating the challenges of getting through even the most basic of routines. She recounted how her son had left her home partially undressed, wandered into the road, and nearly been hit by a car. She urged the committee to remember the most severely affected individuals on the spectrum and dedicate research to finding effective treatment.
Diverse Needs in the Autism Community: The Needs of Adults with ASD
Scott M. Robertson, Chairman of the Board and Co-Founder of the Autistic Self Advocacy Network (ASAN)
Mr. Robertson is an adult with ASD who works as a self-advocate for adults on the spectrum. He is also a Ph.D. candidate at Penn State conducting research on cyberbullying and faith-based bullying. He noted that Pennsylvania was one of the few states to create a state agency for autism and develop a community support system for adults with ASD. It has an Adult Autism Medicaid Waiver that serves several hundred adults. Even if funding were increased, Mr. Robertson said that many would not meet the eligibility requirements based on functional ability. He urged more public-private sector collaboration and increased funding for ASD services research. He noted that greater priority should be placed on obtaining self-sufficient employment, pursuing post-secondary education, and living in the community. He also stated the need for more research on victimization and bullying of adolescents and adults with ASD and increasing investment in developing assistive and supportive technologies.
Safety Subcommittee Update: Interactive Autism Network Survey
Paul A. Law, M.D., M.P.H., Director of Medical Informatics at the Kennedy Krieger Institute
Ms. Singer introduced Dr. Paul Law who helped coordinate a survey on wandering and elopement through the Interactive Autism Network (IAN).43 He noted that IAN has 38,000 members, 17,000 of whom are on the spectrum, while the remainder are family members. He noted that the data was good quality – validation studies were able to confirm an accurate autism diagnosis in more than 98 percent of cases. Internet mediated research has been shown to have less bias than the center-based research used in most studies but is not as unbiased as population-based studies like the CDC's prevalence research.
Little research has been conducted on ASD-related wandering, although a 2007 study found that the behavior was commonly associated with ASD. A 2008 literature review addressed treatments for wandering among all people with developmental disorders. The IAN survey had 41 items and received more than 1,500 responses over a month-long period. While the survey was open to the entire community, the analysis was conducted on responses from a set of pre-selected individuals to get the most representative sample possible. The study got a high response rate with about 60 percent of the 1,098 individuals who were invited to take the survey participating. Instead of using the term "wandering," the creators of the survey opted to describe the behavior as "attempting to leave a safe space and/or caregiver supervision." The study collected data on children 4 to 17 years of age.
The study found that roughly half of the children with ASD between the ages of 4 and 10 had attempted to elope – four times the rate of attempted elopement among the children's unaffected siblings. Thirty percent of 7- to 10-year-olds with ASD engaged in elopement behavior, a rate eight times higher than their unaffected siblings. The chance of elopement was greatest at 4 years of age and then decreased until the teenage years when the risk rises slightly again. Half of all elopement attempts were successful and within these instances, two-thirds of the children were almost injured in traffic and one-third came close to drowning. The police were called in one-third of cases.
Dr. Law noted that elopement behavior in children with ASD was not comparable to wandering in older adults with dementia; only 9 percent of the children who eloped were described to be "confused" or in a fog." The children's mental state was generally clear and the motivation to run came from the desire to escape something or to reach a location or object of interest. Dr. Law said their next IAN questionnaire would address autism and bullying.
Ms. Singer thanked everyone involved for their support and told the committee that they had since formed a working group headed by members of the National Autism Association. The group is trying to determine how to instate a disability-specific emergency response system, much like the AMBER or Silver Alert but without age restrictions.
Safety Subcommittee Update: Medical Code for Wandering in the International Classification of Diseases, Ninth edition (ICD-9)
Coleen Boyle, Ph.D., Director of the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention and Safety Subcommittee Member
Dr. Boyle described how a proposal for an ASD-related wandering code had been submitted to the ICD-9 Coordination and Maintenance Committee that oversees the addition of new medical codes. The proposed code was submitted along with more than 160 other proposals and was discussed during an open meeting in March. The public also had an opportunity to comment on the proposed code and the ICD-9 committee received more than 6,000 comments, most in favor of the code, she noted. The committee ultimately decided to add the wandering code as V40.31 for "wandering associated with diseases classified elsewhere." The code will be secondary to the diagnosis of a disorder such as autism and will be used to promote better data collection and to prompt important safety discussions among healthcare providers, individuals with ASD, and their families. The list of new and revised codes that will go into effect in October 2011 are available on the Coordination and Maintenance Committee's website.44
Questions from the Committee
Dr. Birnbaum asked whether the IAN survey had collected data on the severity of the elopement behavior and Dr. Insel noted that about one-third of respondents ranked it as their number one safety concern. Mrs. Blackwell asked about surveying guardians of adult children (individuals over 18 who are under legal guardianship) on elopement behavior and Dr. Law said that a small sample had been included in the questionnaire but that more work was needed to identify their unique needs. Mr. Ne'eman delved into the differences between dementia-related wandering and ASD-related elopement, asking Mr. Law what could be taken away from the survey. Mr. Law noted that clinicians should assess the motivation for elopement behavior in individual children. There is strong evidence that many children with ASD elope to escape sensory overload, he said.
Update on the Joint Activities of the Safety and Services Subcommittees
Mr. Grossman spoke on behalf of the Services Subcommittee and reported that they had been working with the Subcommittee on Safety to draft a letter to Secretary Sebelius on the use of restraint and seclusion.45 They are currently in the process of planning the September services workshop. He said that the meeting would likely include a town hall meeting that they were trying to schedule to allow the most number of people to participate. Ms. Resnik asked what deliverables would result from the services workshop and Mr. Grossman said that the subcommittee might work to develop a letter or report, keeping in mind that the committee may sunset in September. Ms. Singer suggested increasing the number of speakers from the private sector including a presentation from Ms. Denise Resnik of the Southwest Autism Research & Resource Center (SARRC). Mr. Ne'eman encouraged the services subcommittee to seek input from the broader disability community and Dr. Dawson recommended using the workshop to develop a set of priority areas and identify knowledge gaps for adult services. Ms. Singer recommended starting the meeting with a basic tutorial for families on how Medicaid waivers work and how to access existing services.
Ms. Blackwell then reported to the committee on the joint meeting of the Services Subcommittee and the Subcommittee on Safety. She described the meeting as a success and encouraged members of the committee who did not attend to review the presentation slides and meeting minutes.46 Ms. Lewis, who had been appointed to draft a letter to Secretary Sebelius with recommendations from the workshop, stated that there had been a follow-up call and email exchange to finalize a draft. She noted that the Department of Education had expressed concerns about developing recommendations agencies outside the Department of Health and Human Services.
Because no one from the Department of Education was in attendance, the committee was left to discuss how best to proceed without their input. Ms. Singer recommended moving forward with the letter, noting that it was the Department of Education's responsibility to send a representative to the meeting to outline their reservations. Mr. Ne'eman felt similarly and said that nothing in the letter seemed particularly controversial. Dr. Daniels gave a brief summary of the comments he had heard from the Department of Education, saying that there was concern that the recommendations made by the IACC might not align with the recommendations in the guidance document that the Department of Education is currently developing. They also felt that it was inappropriate to include Education-related activities in a letter to the Secretary of Health and asked that references to education be removed.
Dr. Larke Huang suggested discussing the letter with Dr. Alexa Posny to see if they could reach a compromise that the Department of Education felt did not jeopardize any of their activities already in progress. Ms. Lewis discussed the inherent difficulty in having federal representatives make recommendations to their own agency while engaged in activities related to the issue. The committee discussed if the language could be softened to make it less prescriptive. They decided it would not be feasible to remove the Department of Education completely from the letter but agreed to schedule a conference call before September to work on the language with a representative of the Department of Education present. Mr. Grossman expressed his frustration that the letter had stalled at such a late stage of development.
Dr. Daniels reported on the status of the Mid-Year Summary of Advances. The members were asked to submit up to five articles before the end of the week for the preliminary round. The final 10 articles would be selected after a subsequent vote. The 2009 Portfolio Analysis had been printed and the data tables would be released within a few weeks, she said. The data call for the 2010 report would be going out shortly and would include additional stakeholders such as the Environmental Protection Agency (EPA), National Science Foundation (NSF), and the Nancy Lurie Marks Foundation. The 2010 Portfolio Analysis would also include a companion report assessing autism research publications during the year.
Dr. Insel spoke about the current state of the legislation reauthorizing the Combating Autism Act. Both of the proposed bills on the House and Senate would extend the CAA in its current form until 2015. In July, Dr. Insel had testified before a House Committee on the CAA and recent advances in ASD research.47 He said that he had sensed a positive reception and that the congressional committee had even held up the IACC as a potential prototype for other disease-specific advisory committees. If the CAA is not reauthorized the IACC cannot meet after September 30, but other agency activities would likely continue, he said. Dr. Koroshetz suggested publishing pieces on wandering and seclusion and restraint in an autism journal so that others could pick up where they left off if they were not reauthorized. Ms. Redwood noted that there was still much to be done and recommended appointing an autism task force or a White House office similar to the Office of National AIDS Policy. Dr. Insel said that the committee had been an inspiration to work with and he hoped it would continue because there was much left to accomplish.
The meeting was then adjourned.
These minutes of the IACC Full Committee were approved by the Committee on September 7, 2011.
I hereby certify that this meeting summary is accurate and complete.
Thomas Insel, M.D. /s/
Chair, Interagency Autism Coordinating Committee
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