Minutes of the Interagency Autism Coordinating Committee (IACC) Meeting on July 16, 2010
The Interagency Autism Coordinating Committee (IACC, also referred to as "the committee") convened a meeting on July 16, 2010, from 10:00 a.m. to 5:00 p.m. at the Bethesda North Marriott Hotel & Conference Center 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 R. Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH); Della Hann, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), NIMH; Susan A. Daniels, Ph.D., Office of Autism Research Coordination (OARC), NIMH; Linda Birnbaum, Ph.D., National Institute of Environmental Health Sciences (NIEHS); Ellen W. Blackwell, M.S.W., Centers for Medicare & Medicaid Services (CMS); Josephine Briggs, M.D., (representing Francis Collins, M.D., Ph.D.), National Center for Complementary and Alternative Medicine (NCCAM); Henry Claypool, HHS Office on Disability; Judith Cooper, Ph.D. (representing James Battey, M.D., Ph.D.), National Institute on Deafness and Other Communication Disorders (NIDCD); Geraldine Dawson, Ph.D., Autism Speaks; Lee Grossman, Autism Society; Alan E. Guttmacher, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD); Gail R. Houle, Ph.D., U.S. Department of Education (ED); Larke N. Huang, Ph.D., Substance Abuse and Mental Health Services Administration (SAMHSA); Yvette M. Janvier, M.D., Children's Specialized Hospital; Jennifer G. Johnson, Ed.D., (representing Sharon Lewis), Administration for Children and Families (ACF); Walter J. Koroshetz, M.D., National Institute of Neurological Disorders and Stroke (NINDS); Christine M. McKee, J.D.; Ari Ne'eman, Autistic Self Advocacy Network (ASAN); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Denise D. Resnik, Southwest Autism Research & Resource Center; Stephen M. Shore, Ed.D., Autism Spectrum Consulting; Alison Tepper Singer, M.B.A., Autism Science Foundation; Marjorie Solomon, Ph.D., M.B.A., University of California, Davis; Edwin Trevathan, M.D., M.P.H., Centers for Disease Control and Prevention (CDC); Peter van Dyck, M.D., M.P.H., Health Resources and Services Administration (HRSA).
Introductions and Administrative Comments
Dr. Insel welcomed the committee and noted that the day's meeting would consist primarily of presentations on recent advances in autism research and services. He introduced Ms. Denise Resnik who was attending the meeting in person for the first time since she had been appointed in April and noted that Ms. Sharon Lewis, the newly appointed commissioner of the Administration on Developmental Disabilities at the Administration for Children and Families (ACF), was now appointed as the representative for the ACF, replacing Dr. Jennifer Johnson. Dr. Josie Briggs was present representing Dr. Francis Collins.
Dr. Della Hann discussed lunch and parking details before telling the committee that all future meeting would start at 10:00 a.m. to accommodate members traveling in the morning. The committee approved the minutes of the April 30, 2010 meeting with minor corrections.
The Cost of Autism – Dr. Michael Ganz
Dr. Insel then introduced Dr. Michael Ganz, Ph.D., Adjunct Assistant Professor of Society, Human Development, and Health, Harvard School of Public Health, who noted that while he still retains his adjunct appointment at Harvard, he now works primarily for the consulting firm United BioSource Corporation. The committee then heard Dr. Ganz speak about the lifetime cost of autism spectrum disorders (ASD) which he calculated to be $3.2 million. This figure, calculated in 2007, uses direct medical costs, direct non-medical costs (e.g., childcare, "adult care," special education, supported employment), and indirect costs (e.g., lost wages of the parent or caregiver and the individual with ASD). Dr. Ganz explained that knowing the societal cost of ASD is important when advocating for insurance coverage for families and to understand how to allocate resources across different health support systems. It also demonstrates the monetary value of treatment and prevention to policymakers, he explained. He noted that little work estimating the cost of ASD had been done relative to other conditions and pointed to the editorial published in Autism Research titled "Where are the Autism Economists?"
He then explained his methods for calculating the cost and noted that these were rough estimates that could be improved upon but would require a formidable amount of additional data to do so. Because there is no large database tracking costs for people with ASD across the lifespan, Dr. Ganz used cost assumptions based on published research. He explained that the $3.2 million represented incremental costs – those specifically related to the disorder, above and beyond routine healthcare (e.g., yearly medical check-ups, dental visits, etc.). In his study, Dr. Ganz investigated cost by age and severity, cost over the lifetime (taking inflation into account), and total national cost (multiplying individual cost by the number of people with ASD).
He calculated that the total societal cost at $34.7 billion for all people with ASD in the U.S. over their lifetimes. For each individual, about $300,000 is related to direct medical cost, $900,000 is direct non-medical cost, and $1.9 million is attributed to lost productivity. Dr. Ganz noted that the medical cost is probably considerably higher in 2010. Dr. Ganz then explained how costs are distributed over the lifespan – direct medical costs are significantly higher in young children and decrease as the child ages; non-medical costs increase significantly as the individual reaches adulthood, and spike as the child reaches school-age and again in his early twenties.
Dr. Insel asked what figures had been used for life expectancy with ASD and Dr. Ganz said that he had assumed that life expectancy would be slightly lower than a typically developing person based on the literature. Ms. Resnik asked what housing options were being used in the calculation and Dr. Ganz said that the figure was for adults living outside the home. Mr. Ari Ne'eman asked for details on the types of housing and Dr. Ganz explained that an average cost had been calculated based on all types of housing. Dr. Geri Dawson asked if the cost of psychiatric hospitalization had been included in medical cost and Dr. Ganz said he would have to refer to his article. He then showed a graph broken down by types of medical costs. The price of behavioral therapies dwarfed all the others which included physician care, dental services, drug therapies, complementary medicine, and hospital/emergency care. In a breakdown of non-medical costs, adult care was the costliest followed by special education during school-age.
The cost of lost productivity for the parent or caregiver was at its peak during early childhood at approximately $45,000 and then steadily decreased until it was non-existent at about 30 years of age. The lost productivity for a person with ASD begins at age 21 and is calculated at about $35,000. Dr. Ganz noted that assumptions about lost income were a large driver of overall cost so if that estimate fluctuated because of future economic trends, it would significantly impact the total figure. He stated that the $3.2 million figure was probably a conservative estimate.
He concluded by noting that the average healthcare costs for a person with ASD were about double those of the typical American and 60 percent of the extra costs occur before age 21. He underscored that the estimate was imperfect and would become less valid as healthcare technologies and standards of care change. The figure does not take into account legal fees incurred while trying to get insurance coverage, lost productivity of extended family, mental and physical stress, or certain alternative therapies and diets. It also lacks advocacy and research costs. However, the estimate is roughly equivalent to the estimates for other similar conditions which supports its validity. He said it would be valuable to develop a standardized approach to collecting data on costs and to carefully catalogue out-of-pocket costs for families. He finished his talk by presenting comments he had received from members of the public that reflected two additional costs not included in his model – the cost of divorce and relocation for better services.
Questions and Comments from the Committee
Dr. Shore noted that Dr. Ganz's work emphasized the importance of providing proper interventions for people with ASD. Dr. Marjorie Solomon asked if any different assumptions had been made about the vocational potential of higher-functioning people versus lower-functioning. Dr. Ganz said that he did not know off-hand but could contact her with the answer. Mr. Ne'eman asked Dr. Ganz if by calculating the cost of people with ASD, he was advocating preventing the cost to society by eliminating them entirely, similar to the eugenics movement. Dr. Ganz said that this was not the intent of the work; it merely defined the lost opportunity costs associated with a health condition that may be preventable. Many studies have calculated the cost of other chronic conditions like depression, breast cancer, and overactive bladder, he said, but in no way does that mean they are trying to prevent people from being born who might have overactive bladder or other medical conditions. He cautioned against reading too much into his work from an ethical standpoint and that he had merely conducted an accounting exercise.
Mr. Grossman asked Mr. Ganz for recommendations on what would be needed to get an updated estimate of ASD cost. Mr. Ganz said that it would be valuable to have a longitudinal study where families with children who had just been diagnosed periodically filled out surveys on cost. This registry could also keep information about quality of life, interventions, etc.
Update on the Center for Children's Environmental Health and Disease Prevention – Dr. Isaac Pessah
Next, Dr. Isaac Pessah, Ph.D., Professor for the Department of Molecular Biosciences at U.C. Davis College of Veterinary Medicine and Director of the U.C. Davis Children's Center for Environmental Health and Disease Prevention, presented on current work at the UC Davis Center for Children's Environmental Health and Disease Prevention investigating environmental factors that may contribute to ASD risk. The center was established in 2001 through a competitive mechanism at NIH and EPA. The goal is to evaluate gene-environment interactions that contribute to ASD risk and identify chemical mechanisms of developmental toxicity that may be especially relevant. Dr. Pessah explained that the centers take a truly interdisciplinary approach to their research. The epidemiological component, headed by Dr. Irva Hertz-Picciotto, includes the CHARGE study which has enrolled 1,600 families to study ASD risk factors, the CHARGE-BACK study which has brought back 300 families to do additional analysis of immunological responses, and the MARBLES study which is following 160 women who have previously given birth to a child with ASD from early pregnancy to the age of possible diagnosis.
The clinical and cellular immunology component is headed by Dr. Judy Van de Water and is currently studying autoantibody profiles and their association with ASD, cytokines, and environmental chemicals like polybrominates diphenyl ether flame retardants.
Dr. Pessah then went into more detail about the center's epidemiological studies. The CHARGE study follows two- to five-year-old children who have been diagnosed with ASD, developmental delay, or who are developing typically. Blood, hair, urine, and other biological samples are collected for testing. In the CHARGE-BACK study a subset of these children are brought back for more through immunological assessments. Newborn blood spots are available to look back at any analytes that may be of interest. The MARBLES study is following women who have previously had a child with ASD during a subsequent pregnancy. Blood samples are taken during each trimester and cord blood and other tissue is taken during delivery. The children are followed for two to three years of age.
Dr. Pessah then described some of the findings from these studies. While investigating the potential role of mercury in ASD, researchers learned more about dendritic cell function and found that thimerosal was extremely toxic to these cells. However, they were unable to replicate a previous study showing that thimerosal was especially toxic to immune-compromised mice. A study of blood mercury levels showed that children with ASD had no more mercury in their samples than did their typically developing peers after controlling for fish consumption, a major source of mercury exposure. In an additional study, Dr. Frank Sharp conducted global transcriptional profiling of the children with ASD in the blood mercury study and found about 190 genes that were associated with mercury levels in children with ASD that showed no changes in the control group. This suggests that people with ASD may have a different response to mercury exposure than others, although these findings need to be replicated.
Immunological studies conducted at the center have explored the increased expression of natural born killer cells in children with ASD and maternally derived autoantibodies – antibodies that react to fetal brain proteins that have been found in the serum of some mothers of children with ASD. Researchers have now identified the antigens involves and are trying to develop mouse models.
Dr. Pessah then discussed the persistent organic pollutants currently being studied which include a class of chemicals called non-dioxin-like molecules. These include polychlorinated biphenyls (PCBs) which have been shown to alter synaptic transmission and dendritic plasticity in young mice. This failure to develop proper neuronal networks is seen in ASD. Children with ASD in the CHARGE study had PCB levels five times the national average, a finding similar to other studies.
In addition, cells cultured from children with ASD showed a different innate immune response than that of their typically developing peers when exposed to another non-dioxin-like molecule (PBDE), suggesting that children with ASD respond differently to the same chemical exposure. In closing, Dr. Pessah noted that there was preliminary evidence of mitochondrial impairments in children with ASD in the CHARGE study.
Questions and Comments from the Committee
Dr. Huang asked how women at risk for a child with ASD were defined and Dr. Pessah said that "at-risk" women had previously had a child with ASD. In response to a question about the eventual size of the MARBLES study cohort, he said that the target is 200 women and that currently 150 are enrolled. Dr. Dawson asked about the potential value of the National Children's Study in examining environmental risk factors and Dr. Pessah noted that the study was not specifically designed to look at autism so that the actual population of children with ASD may be relatively small. Dr. Birnbaum asked about other environmental compounds of interest and Dr. Pessah mentioned the pesticides DDE and chlorpyrifos. Ms. Lyn Redwood asked if an attempt was made to evaluate the total body burden of mercury, pointing out that blood tests would only assess recent exposures. Dr. Pessah said that that was a major limitation of the study in addition to only looking at a single time point. He said that the MARBLES study would give information over a stretch of time but would still not address the body burden issue. Dr. Insel asked if DNA was being collected from the children and he asked him to speak further about the maternal autoantibody finding. Dr. Pessah said that DNA was indeed being collected and explained that they were in the process of identifying which antigens the autoantibodies are recognizing. Once these are identified, they can do highly-controlled studies in mice. In response to a question from Ari Ne'eman, Dr. Pessah said that extensive phenotyping was being done on all the children in their studies.
What Causes Autism? – Dr. Philip Landrigan
Dr. Philip Landrigan, M.D., Director of the Children's Environmental Health Center, spoke about environmental factors that may contribute to ASD risk. His article, "What causes autism? Exploring the environmental contribution" appeared in the April 2010 issue of Current Opinion in Pediatrics. Dr. Landrigan started out by noting that while advances in genetic research had uncovered a large number of variants associated with ASD, specific genetic abnormalities account for less than 20 to 25 percent of cases. Thus, it is important to consider environmental factors that contribute to causation. He noted that a report from the National Academy of Sciences estimated that environmental exposures alone accounted for about three percent of neurodevelopmental disabilities (including ASD). They estimated that an additional 25 percent of neurodevelopmental disabilities resulted from interaction between environmental factors and genetic susceptibility. Dr. Landrigan then reviewed specific historical incidents that illustrate the vulnerability of the developing brain to toxic chemicals.
He cited the birth defects caused by thalidomide and DES in the 1950s and mercury exposure in the Japanese fishing village of Minamata. He explained that there are specific windows of susceptibility in utero and as an infant where toxic chemicals can do irreparable harm to the developing brain. He cited a study that found that misoprostol, a medication used outside the U.S. to induce abortions in the first trimester, increases the risk of ASD when the medication fails to terminate the pregnancy. Other studies suggest that maternal exposure to rubella in the first trimester is a risk factor for ASD, as is valprioc acid, an anti-epileptic medication. Recent studies supported by NIEHS and EPA suggest that the insecticide chlorpyrifos may be linked to pervasive developmental disorder (PDD), an umbrella term that includes autism and some other related developmental disorders. He noted that no link had been shown between ASD and vaccines, their components, or scheduling. He noted that Yokohama, Japan had suspended the administration of the MMR vaccine for two years in the 90's amid fears it was related to ASD. During that period the rates of ASD continued to rise.
However, there are other environmental agents that may be associated with ASD. Eighty-five thousand chemicals are registered with the EPA for commercial use. Of the 3,000 chemicals in high production, half have no basic toxicity information available, he said. Dr. Landrigan listed known developmental neurotoxicants: lead, methyl mercury, PCBs, arsenic, and manganese. There is also evidence to suggest that prenatal exposure to phthalates, PBDE's, and brominated flame retardants is associated with diminished intelligence.
Dr. Landrigan put forward a three-pronged approach to safeguard health: enhance the testing of chemicals and tackle the tremendous backlog of untested chemicals, conduct research looking at the timing of exposure in pregnancy, and conduct epidemiologic studies of exposure and outcome. Dr. Landrigan underscored the importance of real-time tracking of exposure due to the short half-life of many chemicals that could potentially be hazardous. This can be achieved through large prospective studies like the National Children's study that will track 100,000 children from before birth to adulthood. NCS is modeled after the Framingham Heart Study which translated their discoveries into real-world prevention, resulting in a 60 percent reduction in stroke and heart disease since 1948. Similarly effective preventative action was taken in 1976 when lead was removed from gasoline in 1976, which resulted in significantly reduced blood lead levels in children. Dr. Landrigan said that he hoped the NCS would be similarly beneficial.
Questions and Comments from the Committee
Ms. Redwood commented that the association between maternal rubella and ASD could be related to treatment with thimerosal-containing injections of gamma globulin during that time. Dr. Insel asked Dr. Landrigan if he felt the increasing rates of ASD pointed to an accumulation of environmental chemicals. Dr. Landrigan said that this supported the theory that some unidentified developmental neurotoxicant is being increasingly used. He theorized that it was also more than one chemical but a host of chemicals contributing. Dr. Birnbaum noted that the most recent CDC report card identified 212 industrial chemicals present in the blood of Americans. Chemicals may be acting in additive or synergistic fashion, she said.
Dr. Joseph Nyre, President and CEO of the Hope Institute and a clinical associate professor at the University of Illinois, Chicago School of Medicine, praised the committee's efforts and commented on the need for continued support for services research and provision. The Combating Autism Act places a priority on services research, work force development, and the collaborative effort necessary to develop and sustain quality services at the local, state, and national levels, he said. He hoped that the reauthorization of the Combating Autism Act would promote the integration of research, work force development, and service. He noted that Illinois has built an infrastructure with the capacity to advance a major service initiative but that service funding from the CAA will be necessary to effectively link services to research and public need.
Ms. Caroline Rodgers spoke about her concern that prenatal ultrasounds may increase the risk of ASD. She noted that ASD rates are highest among white women, who are most likely to receive first trimester prenatal care and lowest among Hispanic women, who are least likely to receive care. ASD rates are also associated with education level – women with college degrees are more likely to give birth to a child with ASD than women without high school diplomas. More highly educated women are also more likely to have prenatal ultrasounds. She made the same argument for older mothers and those with higher socio-economic status. Ms. Caroline cited studies that appeared to link ultrasound exposure to dyslexia, speech delays, and left-handedness (considered a subtle marker for neurological damage when not inherited.) She asked that more studies be conducted to evaluate ultrasound exposure as an ASD risk factor and suggested that the National Children's study and the EARLI study were not collecting data on prenatal ultrasound in a way that could lead to meaningful research on the subject.
Dr. Insel thanked the individuals that had made public comment and reminded the committee that a written copy of all oral comments and those received through e-mail was available in their packets.
Neurofunctional, Structural and Cellular Abnormalities in the First Year of Life – Dr. Eric Courchesne
Dr. Eric Courchesne, Ph.D., Professor of Neuroscience at the University of California, San Diego School of Medicine, talked about his research investigating the neurobiology of ASD. He pointed out that although ASD arises in the first two years of life, there is a lack of studies during this early period of development. He then reviewed some of his findings to date. In 2001, he discovered that most children with ASD have larger than average brain volumes, which has since been replicated by other researchers. By studying head circumference, Dr. Courchesne found that this characteristic brain overgrowth occurred during the first year of life, coinciding with the first behavioral symptoms of ASD. The frontal lobes, temporal lobes, and amygdala show the most overgrowth. These structures are important for social communication, language, and emotion processing. As people with ASD become adults, their brain growth slows and they experience neuron loss and cortical thinning. Dr. Courchesne noted that this pattern was found in many but not all people with ASD and it was important to understand why some individual's growth patterns differed. Dr. Courchesne then described an imaging study of infants with developmental delays. He noted that there were distinct differences in brain development between children with siblings with ASD (multiplex) and those without (simplex). He discussed the possibility that there may be significant functional and genetic differences between the groups. There were also significant differences in developmental trajectory between children with ASD and other developmental delays. Overall, the study found that simplex children had larger brains but performed more poorly on cognitive tests than multiplex children.
In order to capture an fMRI image of one-year-old children with ASD, Dr. Courchesne scanned the children while they slept. Studies have shown that the sleeping brain is able to process language in much the same way the brain does while awake. Dr. Courchesne recorded the toddler's brain activity while listening to a nursery rhyme. The children showed less activation than normal in the left hemisphere which processes language and more activation in the right hemisphere which is responsible for understanding social communication (pragmatics). As the child ages, this overreliance on the right hemisphere occurs at the expense of the development of social pragmatics, Dr. Courchesne said.
The children were also played recordings with the child's name and social commands ("Look over here, Jamie") and a recording with random words as the control. Typically-developing children showed activation in the temporal cortex during the social recording while children with ASD did not.
Dr. Courchesne's most recent studies have focused on identifying the mechanism responsible for the characteristic brain overgrowth. While studying the brains of children with ASD, he found significantly more neurons than would be expected in the region of the brain responsible for higher-order cognitive, social, and language functions. Currently, he is examining the genetic pathways that may be involved in producing excess neurons.
Questions and Comments from the Committee
Ms. Redwood asked if there was evidence of inflammation in the youngest subject's brain, a three-year-old with ASD. Dr. Courchesne said that there was evidence of inflammation of the microglia, a type of cell that acts as the main form of immune defense in the central nervous system. There are signs of classically activated microglia in adulthood but it is unclear whether this is a signal of inflammation or of beneficial synapse remodeling. Dr. Solomon asked what Dr. Courchesne had found about adolescent and adult brain development and he said that the adult brain showed a thinning of the cortex and a reduced number of neurons in the fusiform gyrus, the amygdala, and the cerebellum. Dr. Birnbaum asked if there were animal models for the abnormal brain growth seen in ASD. Dr. Courchesne noted the remarkable lack of studies that have tried to address how genetic findings in animal models can be used to study the known growth pathology in ASD. Studies should also be done to assess whether molecular defects that point to events in the second and third trimester can be promoted by known ASD risk genes like SHANK2 and regions on chromosome 15. Dr. Yvette Janvier noted that there was a significant group of children in Dr. Courchesne's study that had smaller head and brain sizes so it could not be generalized that all children with ASD have macrocephaly and brain overgrowth. Dr. Courchesne said that this was true and noted that the smallest brain in the study surprisingly had the largest number of neurons. He suspected that at some point the huge increase in neurons leads the brain to essentially collapse and he went on to say that similar insults could lead to different response in children based on their genetics. Dr. Koroshetz asked about other ways that multiplex children might differ from simplex children and Dr. Courchesne said that he was currently in the process of determining that; in preliminary studies, he had discovered that they had more neurons. When asked what was needed for future research, Dr. Courchesne emphasized the need to develop novel methods of neuroimaging at a very young age and the collection of biosamples to test for early biomarkers.
Opening Doors: A Discussion of Residential Options for Adults with Autism and Related Disorders – Ms. Denise Resnik
Ms. Denise Resnik, co-founder of the Southwest Autism Research and Resource Center, spoke next about residential options for adults with ASD and other adult services. The day prior, her organization, as part of the Advancing Futures for Adults with Autism (AFAA) group, had participated in a Congressional briefing on these topics. She provided the committee with copies of the Opening Doors report and the executive summary from Advancing Futures for Adults with Autism. Ms. Resnik, the mother of a son with autism, described the mission of SARRC – to provide people with ASD the opportunity to continue their education, gain employment, and live in a supportive community. She said that SARRC was also dedicated to research with substantial success recruiting and enrolling families in clinical drug trials and genetic studies. SARRC strives to help children with ASD integrate into the classroom and build relationships with their peers. She described their FRIEND program (Fostering Relationships in Early Network Development), which not only enhanced the social skills of the student with ASD but increased knowledge about ASD among their peers and decreased the number of playground conflicts. SARRC also collaborates with the Arizona Academy of Pediatrics to improve early screening and has launched several school programs as well.
Ms. Resnik then described their vocational training and life skills program targeted at teens with ASD to help them build their resume transition into jobs. She said the program currently includes 225 teens who have volunteered at local non-profits. SARRC also supports an employment services program that places adults with ASD in competitive employment. In total, SARRC provided services to 2,700 children, teens, and young adults with ASD, 4,000 parents, and 5,000 education and medical professionals in 2009.
Ms. Resnik then described the Opening Doors study, which examined best practices in providing housing options for adults with ASD, obstacles to setting up more residential communities, and recommendations for the future. Looking at over 100 residential programs revealed that waiting lists are very long and that some programs will not house older individuals because of the inability to address issues faced by seniors. Ms. Resnik said that it would be important to bring the private sector to the table to finance residential communities, particularly in light of the increasing number of adults with ASD who would need housing in the coming years. She noted that currently 80 percent of adults with ASD live with their parents, compared with 32 percent of adults without special needs. When some adults with ASD are properly supported they can become stellar employees, she said, noting that much of the cost cited in Dr. Ganz's cost estimate pertained to lost productivity during adulthood.
She reviewed the major findings from the Opening Doors study, including that there was a lack residential options for adults with ASD, a lack of documented design guidelines, no turnkey support service model, and a need to provide more career opportunities for service providers to combat the enormous turnover rate. She discussed financing options for residential communities, noting that the real estate community had been receptive during this period of economic downturn. The organizations involved with the study will next do a market survey in Arizona to gauge what would best meet the needs of families. She mentioned some of the home design goals included in the report – ensuring the safety and security of the residents, providing transitional housing, minimizing sensory overload, and providing adequate choice and independence. The next steps are to develop prototypes to test best practices and new ideas, she said. She underscored that this would have to be a public-private-nonprofit collaboration if it is to succeed. She finished by talking about a Wall Street Journal article by Clare Ansberry that had stuck with her. Ms. Ansberry had become the caregiver for her 50-year-old brother with ASD after their elderly father had died. Without other options, adults with ASD must rely on their family members to bring them into their homes. Ms. Resnik said she hoped the report would contribute to lifting the autism community, as well as those with other special needs.
Questions and Comments from the Committee
Mr. Ne'eman asked if people with ASD were involved in SARRC's work and specifically in creating the "Opening Doors" report. Ms. Resnik said that adults on the spectrum were being consulted during the current implementation phase but that they had not been involved in the actual writing of the report, which mostly consisted of service model summaries. Ms. Blackwell clarified that $674 Medicaid reimbursement mentioned is actually the Social Security monthly income amount. Dr. Solomon asked about SARRC's efforts to help people with ASD go to college and she said that they were currently in the process of developing a pilot program at a local community college that would provide additional resources for students with ASD through the office of special needs. They also planned on providing an autism coordinator for the students and drawing peer mentors from the colleges of education and social work.
Including Students with Autism Spectrum Disorder: Research & Practice – Dr. Carol Quirk
Dr. Carol Quirk, Ph.D., presented to the committee on the importance of inclusive education for students with ASD. Dr. Quirk is president of TASH, an advocacy organization that works toward the inclusion and full participation of people with disabilities. She said that much of the confusion arises from defining "inclusion." Her response to teachers that say inclusion didn't work is that it was then not, in fact, inclusion. Inclusion that fails is a result of inadequate supports and services. She also pointed out that inclusion is more than being physically present someplace just for the sake of being there. She then described what is meant by "least restrictive environment" as defined in the Individuals with Disabilities Education Act (IDEA): Children with disabilities should be educated with children who are not disabled, to the maximum extent appropriate. This should occur at the school the child would go to if he or she were not disabled, commonly called the "neighborhood school." The child should only be removed from that neighborhood school if he or she cannot make progress even with supplementary aids and services. She noted that these "supplementary aids and services" were inadequately defined in the law. The child cannot be removed just because the program must be significantly modified to meet their needs.
Dr. Quirk then presented state inclusion data for students with an individualized education plan (IEP). In New Jersey only 40 percent of children with IEPs are mainstreamed, compared with 80 percent in North Dakota. She discussed why states vary dramatically in their inclusion rates and concluded that the differences were not in the students but with the administrators' attitude, knowledge, and expectations. She said that a large component of classroom success if the "hidden curriculum," the appropriate social skills embedded in the classroom routine. There is very little research on how to teach social skills or develop social relationships, she said. She cited Dr. Scott Bellini as one of the few researchers who have examined how to promote positive social interactions among children in an inclusive classroom.
Dr. Quirk spoke about how programs and materials should be properly modified to meet the needs of the individual student. For example, a lesson which calls for the student to label the layers of the earth may be modified to remove letters from the terms for each layer and then have the student fill in missing letters. Another example was that sticky notes can be placed on the lesson pages by the aide beforehand so the student can quickly flip to the location when asked by the teacher. She said that she was concerned that even when there was adequate research on classroom inclusion, that research would not be translated into teacher preparation. She finished by saying that research emphasis needed to be placed on providing strategies for people with ASD to function in society rather than putting the bulk of money toward pursuing the medical cause.
Comments from the Committee
Ms. Blackwell noted that Dr. Quirk's organization had been instrumental in getting her son into an inclusive setting twenty years ago. She asked what had changed since that time. Dr. Quirk said that there was now more knowledge about how to include students with disabilities, but that there was a lack of understanding in the community about disability and autism, in particular. Ms. Singer asked how to best disseminate education findings to the school districts. Ms. Quirk said that there weren't specific strategies in place and that there was general lack of basic evidence to support inclusive classrooms. Dr. Ed Trevathan asked Dr. Quirk if she had any insight into why certain states or territories had a much higher percentage of inclusion. Dr. Quirk said that resources and culture played large roles. In less affluent states, separate facilities had never been built for children with disabilities, making integration a necessity. In territories like Guam and American Samoa, local cultural values that foster community and inclusion may play a role. Dr. Gail Houle noted that dismantling a highly-developed structure for special education made inclusion difficult for states like New Jersey. There may also be financial disincentives in states that provide more funding for children in a self-contained special education classroom.
Committee Business – Planning the Services Workshop
Mr. Grossman, Co-Chair of the IACC Services Subcommittee, presented ideas for the structure and content of a services workshop sponsored by the IACC Services Subcommittee scheduled for November 8, 2010. He mentioned the challenge in addressing the full range of issues related to ASD services within a one-day timeframe and presented a draft program that he had generated with Ms. Blackwell. The proposed workshop would be structured around the top six issues identified by the public in the Request for Information on ASD services issued in 2008: Adults, Community, Family Support, Early Intervention/School Services, Providers, and Infrastructure. The product from the workshop would be a set of policy recommendations to the Secretary of Health and Human Services. He noted that the current economic climate was particularly challenging because funding for services was decreasing while the need for services was continuing to grow. He said that he hoped that workshop participants would leave with a vision for how the autism services system would ideally look in 20 years.
He then presented a list of potential speakers that included Dr. Nancy Thaler, Executive Director of the National Association of State Directors of Developmental Disabilities Services (NASDDDS), Dr. Bill East, Executive Director of the National Association of State Directors of Special Education (NASDSE), and Dr. Charlie Lakin who works on the National Core Indicators Project which provides a standard set of performance measures across states. Mr. Grossman said that models of cost-effective services and new technologies should also be addressed during the workshop and asked for input from the committee on other topics. Dr. Dawson talked about integrating recommendations from other organizations like Advancing Futures for Adults with Autism (AFAA) into the recommendations that come out of the IACC workshop. Ms. Singer recommended looking at strategies for disseminating services research findings during the workshop. Dr. Insel recommended reducing the goal date to 2020 and having Dr. Richard Frank speak about the CLASS Act (Community Living Assistance and Social Support), which will create a voluntary insurance program for adults to pay for non-medical services and supports needed to live independently in the event that they become disabled. Ms. Blackwell recommended having Mr. Henry Claypool present on how health care reform will impact long-term services and supports. Dr. Insel then recommended Mr. Kareem Dale as another potential speaker. Dr. Larke Huang recommended addressing how the Mental Health Parity Act will impact ASD services and suggested focusing on translation as well as the dissemination of research findings. Dr. Insel noted the importance of presenting the economic impact of their recommendations to create a compelling case. Mr. Ne'eman discussed the follow-up process, recommending that they might convene panels around each of the framework topics. Ms. Singer asked about the audience for the workshop and Mr. Grossman said he envisioned a similar format to the October 2009 scientific workshop which was open to the public with panels of invited experts. Dr. Huang recommended aligning their services recommendation with the aspirational goals for services and supports in the Strategic Plan for ASD Research. Noting the complexity of the service issues, Dr. Dawson stated that it would be important to think strategically about how the workshop could be used to launch the more extensive efforts that would be needed.
Discussion of Progress on the Request for Information, 2010 Mid-Year Summary of Advances, and ASD Research Portfolio Analysis
Dr. Hann reminded the committee that the RFI soliciting input on the Strategic Plan update was released on June 18 and would close on July 30. These responses will be collected and given to committee for their consideration. She also asked the committee members to submit their nominations for the mid-year Summary of Advances if they had not already done so. These nominations will then be voted on to determine the top 10 articles for the report. Ms. Redwood said that she felt, based on the language of the Combating Autism Act, which provided a list of specific topics that the summary should encompass, that the Summary of Advances should include an equivalent number of advances related to each chapter of the Strategic Plan. Mr. Ne'eman noted, on the other hand, that one advantage of creating the Summary of Advances according to perceived importance/impact of publications without making a deliberate effort to equally represent all chapters of the Strategic Plan was that it highlighted the lack of research in certain areas like services and supports versus areas that are better-funded. Dr. Hann noted that a longer compendium of all articles related to ASD that had appeared in the media or had been funded through NIH would be made available. Ms. McKee asked if the compendium from the 2009 advances had ever been released and Dr. Hann said that it was still in process and should be available in the future. Ms. Redwood noted that organizing the compendium by Strategic Plan chapter would act as a gauge of progress.
Dr. Hann said that the yearly portfolio analysis was underway. A data call had already gone out to all the funders who contributed to the previous report with the addition of the Autism Science Foundation.
Discussion of Public Comments
The committee discussed the usefulness of the public comments, noting that some had very specific recommendations that should be considered for the Strategic Plan. Mr. Ne'eman singled out one comment calling for specific prioritization of certain subgroups. Noting that several comments asked for additional members with certain areas of expertise be added to the committee, Ms. Redwood asked about the process for adding more members to the IACC. Dr. Insel suggested that rather than adding members to the committee itself it might be more feasible and appropriate to bring in experts to brief the committee on topics of interest at IACC meetings and workshops. Ms. Redwood asked that a list of specific risk factors mentioned in public comments received be kept so they could consider them during the Strategic Plan update. (During this time, a five-minute power outage occurred and committee business was temporarily suspended.) Dr. Birnbaum noted that some of these factors were already being investigated at NIEHS. For instance, researchers are currently recruiting for a study of children who are fed only soy milk, however they are having difficulty identifying participants. The committee agreed that a list of risk factors submitted by the public should be kept for consideration during the update. Ms. Dawson also noted that there were recommendations from the speakers that should be kept in mind.
Ms. Singer asked about keeping a calendar of events related to ASD and Dr. Hann said that OARC was considering what options there may be for posting information about meetings that are open to the public as well as providing information to the committee about key meetings that are not open to the public. One option was having OARC pass along information about non-IACC public meetings related to autism electronically and having IACC members report to the committee regarding closed meetings of their agencies or organizations.
Round Robin for IACC Member Updates
National Institute on Environmental Health Sciences
Dr. Birnbaum said that NIEHS, in conjunction with Autism Speaks, was holding a meeting to identify ways to accelerate research on environmental factors in ASD. They hope to develop recommendations for highest priority areas of research that address the contribution of environmental factors to risk, solutions for barriers to progress in this area, and resources needed to increase the pace of research. She said that all the products from the workshop will be shared with the IACC and welcomed any members who wished to attend.
Eunice Kennedy Shriver National Institute on Child Health and Human Development
Dr. Alan Guttmacher noted that there would be a meeting sponsored by NICHD on racial disparities in identifying children with ASD on August 19, 2010. He said the topic was inspired by the work of the IACC and noted that the meeting was open to the public, although pre-registration was highly recommended. He also mentioned that the NICHD was in the process of developing their ten-year vision for scientific opportunities aligned with the Institute's mission. More information about the related workshops would soon be posted on the NICHD website.
Centers for Medicare & Medicaid Services
Ms. Blackwell said that they were happy to welcome a new administrator at CMS, Dr. Donald Berwick, and noted that the Medicaid director has issued letters on the CMS website that may be of interest to the committee. She mentioned the Reinventing Quality Conference in August on quality in home and community-based services. Ms. Blackwell then reported on the progress of the State of the States project, saying that they were in the process of looking at the data gleaned from institutional systems including the Department of Education. They were also examining qualitative data from interviews with state policy officials asking questions about types of publicly-funded services and supports available to people with ASD, the number of people who access them, and how improvements in diagnosis are being made. This qualitative assessment had been field tested in Minnesota and Vermont and would be used in other states soon. They have also formed a technical advisory panel that has being consulted throughout the project. Data is expected in December 2010 and the first iteration of the State of the States should be completed in December 2011. She noted that the fiscal stress being felt by most states, resulting in fewer available staff members to contact, may be an obstacle to overcome. Dr. Houle suggested including the military medical system TRICARE in future assessments. Ms. Blackwell said that in the future they also would like to look at waitlists for services but that the differences between states made it hard to assess currently.
Dr. Dawson told the group about a meeting to be held September 1-2, 2010 focused on drug discovery, therapeutic targets, and developing better outcome measures for clinical trials. The meeting is one of three sponsored in part by Autism Speaks as part of a larger translational medicine research initiative.
Mr. Grossman reported on the Autism Society's annual conference that had been held in Dallas, Texas. The keynote addresses had included an update from Mr. Kareem Dale on the Administration's autism efforts, the second was from Dr. Cathy Pratt on how autism affects the family, and the third was from self-advocates who spoke about how online social networking had positively affected them. There was also a town hall meeting held on changes to the DSM-5 and a one-day symposium on continuing medical education. Next year's conference will be held on July 6, 2011 in Orlando, Florida.
Autistic Self-Advocacy Network
Mr. Ne'eman told the committee about an event being organized by the Autistic Self-Advocacy Network and Self-Advocates Becoming Empowered in September on defining truly integrated community living for people with disabilities. He also described Autreat, ASAN's retreat for people with ASD that included a discussion about overcoming challenges for people with ASD when going through airport screening. A representative of the Transportation Security Administration was present to hear directly from self-advocates.
Administration for Children and Families
Dr. Jennifer Johnson shared that ACF had received funds from Congress to establish a center to provide information and resources on autism and other developmental disorders to the community. Information is available on the ACF website.
Dr. Insel thanked the committee members for their participation and reminded them that the next meeting would be held October 22, 2010. He then adjourned the meeting.
These minutes of the IACC Full Committee were approved by the Committee on October 22, 2010.
I hereby certify that this meeting summary is accurate and complete.
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee