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Minutes of the Interagency Autism Coordinating Committee (IACC) Full Committee Meeting on July 10, 2012

The Interagency Autism Coordinating Committee (IACC, also referred to as "the committee") convened a meeting on Tuesday, July 10, 2012, from 9:00 a.m. to 5:00 p.m. at the L'Enfant Plaza Hotel in Washington, D.C.

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.

Participants:

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; Idil Abdull, Somali American Autism Foundation; Anshu Batra, M.D., Our Special Kids; James Battey, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders; Coleen Boyle, Ph.D., Centers for Disease Control and Prevention (CDC); Noah Britton, M.A., Bunker Hill Community College; Sally Burton-Hoyle, Ed.D., Eastern Michigan University; Matthew J. Carey, Ph.D., Contributor, Left Brain Right Brain; Dennis W. Choi, M.D., Ph.D., Simons Foundation; Francis Collins, M.D., Ph.D., Director, National Institutes of Health; Jose F. Cordero, M.D., M.P.H., University of Puerto Rico Graduate School of Public Health; Jan M. Crandy, Nevada State Autism Treatment Assistance Program; Geraldine Dawson, Ph.D., Autism Speaks; Denise Dougherty, Ph.D., Agency for Healthcare Research and Quality (AHRQ); Tiffany R. Farchione, M.D., Center for Drug Evaluation and Research (CDER), Food and Drug Administration (FDA); Alan E. Guttmacher, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD); Laura Kavanagh, M.P.P., Health Resources and Services Administration (HRSA); Donna M. Kimbark, Ph.D., Congressionally Directed Medical Research Programs, Department of Defense (DoD); Walter Koroshetz, M.D., National Institute of Neurological Disorders and Stroke; Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences (NIEHS) (representing Linda Birnbaum, Ph.D.); Sharon Lewis, Administration on Intellectual and Developmental Disabilities (AIDD), Administration for Community Living (ACL); David S. Mandell, Sc.D., University of Pennsylvania School of Medicine; John P. O'Brien, M.A., Centers for Medicare & Medicaid Services (CMS); Alexa Posny, Ph.D., Assistant Secretary of Special Education and Rehabilitative Services, Department of Education; Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Scott Michael Robertson, M.H.C.I., Autistic Self Advocacy Network; John Elder Robison, Author; Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF)

Call to Order and Opening Remarks

Dr. Insel called the meeting to order and welcomed both old and new Committee members to the meeting. With the September 30, 2011 reauthorization of the Combating Autism Act by Congress, the IACC is now entering its third iteration since its creation in 2000. Dr. Insel thanked past members who have left the Committee for their service and hard work and led the new members in a round of introductions.

The Honorable Kathleen Sebelius, Secretary, U.S. Department of Health and Human Services

Secretary Sebelius thanked the Committee for the invitation to speak with them and emphasized the importance of the IACC in the fight against autism. The previous iteration of the Committee was very influential and Secretary Sebelius thanked the federal and public members who are no longer part of the IACC for their five years of hard work, advocacy, and guidance.

Over the past twenty years, awareness and identification of autism spectrum disorders has increased dramatically. In the 1990s, it was believed that autism only affected 1 in every 2,000 children. Today, it is being diagnosed at a rate of 1 in every 88 children. It is a critical time for autism research, and President Obama acknowledged the importance of autism for our nation's health when he identified the condition as one of the top three national health priorities in 2009. The Administration has tried to sustain that urgency since then, as exemplified by the passing of the Affordable Care Act and the Supreme Court's historic ruling upholding its constitutionality. Providing affordable, quality, and inclusive healthcare to children and families with autism will be critical going forward and new policies are already being implemented. For example, children are now able to stay on their parents' health insurance until they turn 26 and no one can be denied insurance due to a pre-existing condition.

The other side of the coin is research, and while progress has been made, we still have much to learn about the causes of autism and the needs of the various segments of the autism community, particularly adults and non-verbal school-aged children. As a result of the American Recovery and Reinvestment Act (ARRA), the National Institutes of Health (NIH) received $122 million in research funding, which is being used to target goals identified in the IACC Strategic Plan for Autism Spectrum Disorder Research. There is much work still to be done, however, particularly in regard to early detection, early interventions, closing gaps in services among minority populations, and expanding adult services. To help the process along, the Department has invested $3 million to develop a national autism resource and information center called Autism NOW to better provide assistance to families with autistic children and those in need of information.

The ultimate goal is a nation where every person with a disability has a chance to live in his or her community and be treated with the dignity and respect they deserve. To that end, the Department has created a new office called the Administration for Community Living, which will be working to maximize the independence, well-being, and health of people with disabilities, including people with autism, to make sure that all Americans with disabilities have the opportunity to live fulfilling, self-determined lives.

Questions from the Committee

Ms. Singer brought up the need to focus on issues of safety. As part of the previous IACC's Subcommittee on Safety, Ms. Singer mentioned that they sent Secretary Sebelius letters advising her on issues of wandering and reclusion and restraint. She asked if members of the Secretary's staff will meet with members of the new IACC about these issues. Secretary Sebelius said that she would follow up on these issues.

Ms. Abdull asked if the Affordable Care Act (ACA) provides for Medicaid coverage of certain autism interventions, such as Relationship Development Intervention (RDI) or Applied Behavior Analysis (ABA). Ms. Abdull also asked whether HHS can do anything to help improve and promote culturally-based treatment for minority communities. Secretary Sebelius said that the ACA does not affect the internal mechanisms of Medicaid and that the specifics of what treatments are covered will still be decided at the state level. As for the cultural diversity of providers, the main area where HHS is trying to push for change is by providing funding and culturally-competent training wherever possible.

Ms. Crandy asked the Secretary if HHS could include ABA as part of the essential health benefits under the ACA, as well as support Medicaid coverage of ABA and a federal match for states providing evidence-based treatment to individuals with autism. She also requested that HHS address parents' concerns regarding the possible side effects of vaccinations.

Ms. Redwood shared Ms. Singer's concerns about safety issues and gave the Secretary copies of the letters that had been written by the IACC. Ms. Redwood also asked the Secretary to declare autism a national health crisis and to create an office under the NIH Director that would be devoted to autism. The Secretary responded that there is a sense of urgency in the Administration regarding autism and that individuals in each of the 11 agencies within HHS are working on this issue daily, providing a range of services.

The Honorable Michael Doyle, U.S. House of Representatives, 14th District of Pennsylvania

The Committee was then joined by the co-authors and co-sponsors of the Combating Autism Reauthorization Act, Rep. Michael Doyle and Rep. Christopher Smith.

Rep. Doyle discussed the bipartisan Congressional Autism Caucus, co-chaired by Reps. Doyle and Smith, which has been working for more than 10 years to expand federal research on autism spectrum disorders and to adopt federal policies that guarantee the necessary assistance to individuals with autism and their families. The IACC, reauthorized along with the Combating Autism Act, is an important part of this process. The Committee helps coordinate and focus research, makes sure funds are spent appropriately and efficiently, and cultivates a diversity of opinion and a culture of transparency.

Discussion with stakeholders led Reps. Doyle Smith to the conclusion that some changes to the IACC's charge were needed, so they introduced the Autism Spectrum Disorder Services Act of 2011, which would broaden the existing IACC by increasing public representation and by emphasizing an increase in the available services to individuals with autism. The legislation would also establish planning and demonstration grant programs for services to children, transitioning youth, adults, and individuals of any age who may be at risk of injury, with a strong focus on making sure that states have the infrastructure to disseminate that critical information. Unfortunately, the current economic and political climate has made the possibility of Congress approving any bill that increases spending highly unlikely.

The Honorable Christopher Smith, U.S. House of Representatives, 4th District of New Jersey

Rep. Smith first became involved with autism during his first term in Congress in the early ‘80s. In January of 1999, Rep. Smith introduced the Autism Statistic Surveillance, Research, and Epidemiology Act (ASSURE) to establish a national program to combat autism which would include three to five Centers of Excellence and a federal advisory committee, the forerunner to the current IACC. After considerable lobbying by members of Congress, parents, and autism awareness organizations, ASSURE was eventually included in the Children's Health Act of 2000. At the last minute, Congress approved the Combating Autism Reauthorization Act in September 2011, which authorizes $693 million for autism-related activities over the next three years.

As we focus on improving autism research and treatment here in the United States, it is important to also bear in mind that the autism crisis affects the entire world. Recent estimates suggest that up to 1 percent of the world's population, or around 67 million people, suffer from an autism spectrum disorder. In many developing countries the autism support infrastructure is non-existent. Reps. Smith and Doyle have introduced a bill to the House, the Global Autism Assistance Act, which would establish a program to help combat autism globally.

Kareem Dale, J.D., M.B.A., Associate Director, White House Office of Public Engagement, Special Assistant to the President for Disability Policy

In his role in the Office of Public Engagement, Mr. Dale coordinates the White House's work on disability policy. Making sure the disability community has the right policies in place across the board, particularly in regard to employment, education, and access to affordable healthcare, has been one of the President's priorities since he entered office.

Mr. Dale said the White House is aware of the frustration many in the community feel about the pace of progress on the autism issue at the governmental level. Mr. Dale shares these frustrations and assures the Committee and the public that the Administration is committed to staying focused on autism research and treatment. As part of this commitment, the White House is working to expand the emphasis on autism-related disorders to beyond just the healthcare arena and into higher education, employment, adult services, transportation, and housing. It is critical to approach the issue from all angles, which is why HHS's new Administration for Community Living will be vital going forward.

Michael Strautmanis, J.D., Deputy Assistant to the President and Counselor for Strategic Engagement to the Senior Advisor, Executive Office of the President

Like Mr. Dale, Mr. Strautmanis has worked closely with the President and the White House on the issue of autism. He confirmed Mr. Dale's report on the importance of continued progress in autism research and treatment to the President. From his own perspective, Mr. Strautmanis personally assured the Committee that, as a father of a child with autism himself, he will remain committed to the issue and bring a sense of urgency to the White House every day.

Mr. Strautmanis thanked the Committee for their work, along with the Congressmen and federal officials, and stressed the importance of coordination and communication between government departments and agencies, as well as maintaining communication with the autism community itself.

Alexa Posny, Ph.D., Assistant Secretary of Special Education and Rehabilitative Services, U.S. Department of Education

Dr. Posny began by giving a brief overview of the recent history of special education in the United States. Before the passage of the Education for All Handicapped Children Act (EAHCA) in 1975, only 1 in 5 students with disabilities were educated within the public school system, and 2 million children were completely excluded. EAHCA was amended in 1990 and became the Individuals with Disabilities Education Act (IDEA), which remains the governing legislation on the education of children with disabilities. Today, almost 7 million kids are served within the public school system. Most importantly, more than 60 percent of students with disabilities are served in the general education classroom for more than 80 percent of the day.

As far as children with autism, since 2000 the number of children receiving services for autism has increased from 80,000 to 330,000. In the last four years, the percentage of students with autism has nearly doubled, from 3.6 percent to 6.3 percent. Nonetheless, between 2007 and 2011, the percentage of students with autism who attended a regular classroom for at least 80 percent of the day has increased from 32 percent to 38 percent. The age of diagnosis in the U.S. is at about three to four years of age, which is too late. Research is showing that diagnosis can be made as early as between 18 and 24 months.

The Department of Education recently established an ED Disabilities Strategy Work Group, which identified five objectives for the Department to target in its work on special education. The first is high-quality early intervention and pre-school services in natural environments and inclusive settings to enhance each child's development. Second, children, youth, and adults must learn, work, and participate in inclusive, integrated settings in their schools and communities and be prepared and supported for college and/or career success, independent living, and full participation. Third, children, youth, and adults must have access to high-quality instruction and support services delivered by great teachers, leaders, and service providers who meet their individual learning and social and emotional needs and improve their outcomes. Fourth, we must align children and young adults to career- and college-ready standards, promote closing the achievement gap, ensure the continuous improvement, and reflect high expectations for youth and adults with autism spectrum disorders. Finally, we must continue to support research and innovation and the use of evidence-based practices that are essential to improving outcomes for children, youth, and adults with disabilities.

The Department of Education has a number of offices focused on providing funding to autism research and support organizations throughout the country. Dr. Posny also runs the National Institute on Disability and Rehabilitation Research (NIDRR) and the Rehabilitation Services Administration (RSA), both of which remain focused on supporting children and adults with autism.

Francis Collins, M.D., Ph.D., Director, National Institutes of Health

Dr. Collins expressed the NIH's continued commitment and dedication to ASD research, particularly through the Institutes represented on the Committee by Dr. Insel (National Institute of Mental Health), Dr. Guttmacher (National Institute of Child Health and Human Development), Dr. Koroshetz (National Institute of Neurological Disorders and Stroke), and Dr. Battey (National Institute on Deafness and Other Communication Disorders).

The NIH currently invests approximately $170 million annually in research on autism spectrum disorders. This amount has gone up threefold in the last decade, even as NIH's budget has been relatively flat. The NIH has put significant effort into fighting to maintain this budget during the tough economic climate the U.S. has been experiencing over the past years.

One of the main areas NIH research has been looking at is early detection and diagnosis. Many speakers addressed how crucial early identification is to putting children on the right educational path. NIH is currently funding a number of different studies. For example, NIH-supported investigators at the University of California, San Diego are developing a test based on eye movements that appears to be a valuable and objective method of being able to assess ASD in children 1 to 3 years old, with nearly 100 percent accuracy. There is also a five-minute screening checklist developed and tested by our Autism Centers of Excellence to identify in a child's one-year checkup whether there are subtle signs of ASD that might provide an opportunity for earlier diagnosis and intervention.

The NIH is also working on developing and assessing potential interventions in order to improve outcomes of children diagnosed with ASD. Research is also being conducted in hopes of identifying the origins and causes of autism, whether it is environmental in nature, genetic, or perhaps a combination of both.

The NIH's newest Institute, the National Center for Advancing Translational Sciences, has Dr. Insel as its Acting Director. The goal of the Center is to be able to bring together findings and research from disparate fields within medicine and across the health industry in order to find out how to put all this information together in a way that efficiently and effectively helps patients. Autism will be an important part in the new Center's work, which will hopefully enable the NIH to continue the progress being made in autism research despite the difficult financial climate.

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The Charge of the Committee

Thomas Insel, M.D., Director, National Institute of Mental Health, IACC Chair

As the first meeting of the newly-reconstituted Committee, Dr. Insel gave a brief overview of the IACC's charge and what new members can expect moving forward. As a coordinating committee, the IACC's primary task is coordination, which covers the entire range from the most fundamental science to the most important applications and dissemination of services and social inclusion. A Strategic Plan was developed in 2009, under which the Committee is tasked to focus and accelerate progress, and to serve as a forum where issues can be discussed as they emerge, not only from the non-federal members of the Committee, but from the public who attend the meetings and submit comments.

The Committee is limited in what it can do, however. It does not fund research and cannot set policy, and does not have the authority to force agencies to fund specific projects or to implement specific policies. It is an advisory group, but despite its limitations the Committee has accomplished much and hopes to continue to do so in this newest iteration.

Diversity is central to the Committee's makeup; many different perspectives and communities are represented, not all of which are in agreement. Nonetheless, as part of the 2009 Strategic Plan the Committee was able to reach a consensus on a group of shared goals to help anchor its mission: a sense of urgency; a commitment to scientific excellence and rigor; a spirit of cooperation; and the importance of accountability.

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Public Comments

Ms. Pam Rockwell spoke to the Committee about dedicating more research towards addressing the role of maternal antibodies that are linked to autism. While the federal government does support this research as part of larger studies of environmental factors in autism, no one is considering that these antibodies could be causing autism transmitted through blood products routinely administered to pregnant women. No one has considered that autism might be transmissible by contaminated transfusions, just like an infectious disease. Current research at the MIND Institute and the Kennedy Krieger Center supports these hypotheses. Ms. Rockwell asked that the IACC direct Secretary Sebelius to ask the FDA blood products safety labs to test immunoglobulin products that are used during pregnancy for maternal antibodies that are linked to autism.

Dr. Eileen Nicole Simon discussed the issue of umbilical cord clamping in newborns. Nuclei in the auditory pathway of the brain are crucial to language development and have proven most susceptible to oxygen insufficiency at birth. Components of vaccines, such as that for hepatitis B, given soon after birth may likewise get into the brain if an infant has suffered even a brief lapse in respiration. Dr. Simon asked that the IACC suggest that immediate clamping of the umbilical cord be stopped and that hepatitis B vaccination not be given soon after birth.

Dr. Catherine Swanwick presented MindSpec's new online science outreach resource, the Autism Reading Room. MindSpec is an organization devoted to developing autism databases, autism research, and autism outreach. Launched in April of 2012, the Autism Reading Room features interactive tools to explain current scientific knowledge about autism spectrum disorders. Topics available include risk factors, diagnosis, brain biology, brain imaging, biomarkers, stem cell research, misconceptions, and trends/statistics. All articles are written by scientists. It also provides tools, such as an autism dictionary, an international public policy forum, and autism research news in context.

Mr. Mark Blaxill decried what he sees as the broken system of federal governance in relation to the autism epidemic. He argued that money is being spent inappropriately and ineffectively and that the government does not appreciate the gravity of the autism crisis. He expressed his hope that the new members of the Committee would work to transcend the broken system of government and do what they can to end the autism epidemic.

Mr. Jake Crosby, a person with autism, believes that autism should be prevented and cured, an opinion he argued is not represented on the Committee, despite its claim to a diversity of opinion. Members of the IACC, he argued, have consistently and purposefully worked to cover up and stifle research that suggests a causal link between vaccination and autism.

Ms. Dawn Loughborough, a mother of a child with autism, came before the Committee to recommend the creation of a task force to address the role of environmental causation. The task force would work at identifying initiatives, structures, and operations for discovering environmentally-triggered medical conditions in autism causation.

Ms. Katie Weisman, a mother of triplets with ASD, spoke to the Committee on behalf of SafeMinds. The role of mercury in causing autism continues to be overlooked and ignored. Ms. Weisman asked the IACC to reread and revaluate the literature on mercury and support new studies of total mercury exposure relative to autism for both mothers and children. She asked that a conference on autism be convened that would bring together the leading autism researchers from various fields and a group of mercury toxicologists so that the issue can begin to be tackled head-on.

Ms. Caroline Rogers discussed the role of prenatal ultrasounds as a factor in autism causation. She spoke to the importance of thermal regulation during pregnancy and the apparent correlation between the introduction of prenatal ultrasound and the rise in the autism rate. Ms. Rogers argued that since thermal intrusions on the fetal environment of any kind increases the risk of having a child with autism, prenatal ultrasound is the likeliest cause of the autism epidemic.

Ms. Mary Holland expressed her disappointment with what she sees as the complacency and lack of urgency of the Committee, particularly in spite of the fact that the autism prevalence rate has continued to climb dramatically during the years the IACC has been in existence.

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ASD Science Update

Thomas Insel, M.D., Director, National Institute of Mental Health, IACC Chair

In early detection, the most promising area of research is using magnetoencephalography (MEG) or diffusion tensor imaging in sibling studies to try to identify when and where in brain development the signs of ASD or being at risk for ASD begin to occur. As Dr. Collins mentioned, eye gaze studies are also showing positive results in isolating young children with ASD from other developmental disorders.

As far as understanding how the disorder itself works, studies are currently looking at autism as a synaptic disorder, trying to understand what is happening throughout the brain at synapses that seem to be not able to process information at the rate that one would expect. Interest is also growing in looking at how the immune and gastrointestinal (GI) systems might fight together in this process.

Looking at causation, there are, as we know, two main areas of focus: genomic factors and environmental factors. Recent research on the former has looked at the possibility of de novo mutations, which is to say mutations that develop spontaneously and are not inherited from the parents. One recent paper has hypothesized that carnitine biosynthesis is involved because of a mutation or a common variation that reduces the ability to make carnitine, which is an amino acid derivative that comes often from meat. This suggests something that may be able to be treated through diet. Current work in the environmental arena is being led by the Childhood Autism Risks from Genetics and the Environment (CHARGE) study and studies by Irva Hertz-Picciotto looking at exposures during pregnancy.

A number of pharmaceutical companies are continuing research looking at possible biomarkers in hopes of developing pharmacological treatments. Behavioral interventions are being developed as well, including a pilot study looking at the possibility of working with children preemptively, pre-diagnosis, in hopes of preventing development into a full-scale disorder.

The National Database for Autism Research (NDAR), which brings together research information from across public and private sources, now has more than 30,000 subjects. NDAR helps address one of the goals in the IACC Strategic Plan, which was to coordinate all of the results to one place with standardized measures so we can begin to integrate the data and allow public access to research information.

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Administration for Community Living

Henry Claypool, Principal Deputy Administrator, Administration for Community Living (ACL)

Mr. Claypool, a former member of the IACC, spoke to the Committee about the Administration for Community Living (ACL), a new office within the Department of Health and Human Services. The ACL was formed from the combination of a number of previously existing offices: the Administration on Aging, the Office on Disability, the Administration on Developmental Disabilities, and the President's Committee on Intellectual Disabilities. The goal of the agency is to develop the long-term services and supports in community-based settings to make sure that people with disabilities have the opportunity to live in their homes and communities across the age span. The ACL intends to develop a strong and rich collaboration with the Substance Abuse and Mental Health Services Administration (SAMHSA) so that work on behalf of people in the mental health community can continue to advance.

Mr. Claypool gave a brief overview of the advances made in the past few decades in how we treat people with disabilities. In the past 30 years, the country has moved away from the mass institutionalization of people with disabilities towards community integration. It has taken some time to build the infrastructure necessary, particularly in regard to housing, to move individuals from institutions back to communities that were prepared to make the transitions possible.

Questions from the Committee

Ms. Abdull expressed concern that, at least in Minnesota, there remain thousands of people on waiting lists for service waivers and asked what is being done to remedy that problem. Mr. Claypool said that a lot of that is due to states' inability to provide resources to match the federal dollars and that the government is working to find creative ways to help states provide the services that the community needs. Mr. Scott Michael Robertson asked what the developmentally disabled community can learn from the aging community and how the ACL plans to take advantage of its past work in aging. Mr. Claypool says there will be a lot to draw from in the Department's work in aging, and in particular pointed to the non-Medicaid community-based services infrastructure that exists in the aging community.

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Update on Restraint and Seclusion

Larry Wexler, Ed.D., Director, Research to Practice Division, Office of Special Education Programs, U.S. Department of Education

Dr. Wexler presented to the Committee the Department of Education's resource document on restraint and seclusion. While the document does not have the force of law or regulation, it represents the best and most up-to-date thinking on the topic, the purpose of which is to serve as a guiding resource for states and school districts looking to craft policy regarding restraint and seclusion.

The first key concept that the document covers is safety. It follows the simple principle that every child in every school in this country, and every other country, should be safe. The second point that they wanted to emphasize was that the principles behind the document apply to all children, not just children with disabilities. 70 percent of children who were restrained or secluded were kids with disabilities, but 30 percent were not. So this is not just an issue for the disabled community.

The first focus ought to be on preventing the need for restraint and seclusion, not training everybody on how to use it. There is no evidence that using restraint or seclusion is effective in reducing the occurrence of the problem behaviors that precipitate the use. Very simply, restraint and seclusion may be needed in an emergency situation, but those practices do not address the stimulus for the behavior. It should never be used as a punishment. Restraint and seclusion should never be used in a manner that restricts a child's breathing or harms the child in any way.

In fact, the only circumstances where it would be reasonable to use mechanical restraints are only as authorized by a licensed physician or other qualified health personnel. Physical restraint or seclusion should not be used except in situations where the child's behavior poses imminent danger or serious physical harm to himself or others.

Restraint and seclusion simply does not address the cause of the underlying behavior. Any program that is developed by schools or the states should work to address the causes and stimuli of the behavior. Teachers and other personnel should be trained regularly on the appropriate use of effective alternatives to restraint and seclusion. If the technique does need to be used, it should be discontinued the moment the individual is no longer a threat or a danger to himself or others, and not a moment longer.

The hope is that the dissemination of this document will help guide states, school districts, and individual schools to develop safe and effective programs for their special education communities.

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Update on the DSM-5 Criteria for Autism Spectrum Disorders

Susan Swedo, M.D., Chief, Pediatrics & Developmental Neuroscience Branch, NIMH Chair, DSM-5 Neurodevelopmental Disorders Workgroup, American Psychiatric Association

Dr. Swedo gave the Committee an update on the proposed changes to the criteria for autism spectrum disorders for the fifth edition to the Diagnostic and Statistical Manual of Mental Disorders, known as the DSM-5 edition.

Dr. Swedo discussed three major concerns the Workgroup has received about their work. The first is that statistical sensitivity is sacrificed in order to improve specificity. Specificity has been a problem for autism spectrum disorders because of its overlap with so many other neurodevelopmental conditions and with neuropsychiatric disorders, particularly in DSM-IV, where attention deficit hyperactivity disorder is an exclusionary diagnosis.

Much public attention and criticism has been paid to the proposal to merge Asperger disorder into the autism spectrum disorders. Many individuals with Asperger disorder see this change as a potential loss of identity. What were three diagnostic domains will become two in the DSM-5: one domain of social communication deficit and one for restrictive, repetitive behaviors. PDD will be replaced by the autism spectrum disorder, and individual diagnoses will be merged into a single behaviorally-defined disorder.

The final criticism has been the pre-/post-DSM-5 research studies won't be comparable, but Dr. Swedo assures the Committee that they have been very sensitive that nothing is done to make previous research useless.

The DSM-IV had required that symptoms be present prior to the age of three years for diagnosis. However, studies have shown that there are individuals in whom the deficits are present early in childhood, but because of a sheltered early preschool environment or even grade school environment, they might not be fully manifest until the social demands exceed capacity at a later age. The DSM-5 will specify that symptoms can now be seen during later adolescence or young adulthood.

Questions from the Committee

Ms. Jan Crandy asked whether it would be a possible for an individual to lose his or her diagnosis after successful behavioral intervention. Dr. Swedo said that each criterion contains the phrase “current or by history” specifically to prevent that possibility. Mr. John Elder Robison asked whether language will remain allowing for individuals to continue to identify as someone with Asperger's, despite the merging of Asperger's into the autism spectrum diagnosis. Dr. Swedo said that that language would remain intact. Mr. Robison then asked how the new classification of Asperger's will affect insurance billing codes. Dr. Swedo responded that the U.S. has decided to skip ICD-10, meaning that billing codes will remain as described in ICD-9 until ICD-11 is ratified. DSM-5 does not determine codes, but Dr. Swedo's working group has been in contact with the group working on ICD-11.

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Recent Developments in Insurance Coverage for Individuals with Autism Spectrum Disorders

Peter Bell, M.B.A., Executive Vice President of Programs and Services, Autism Speaks

Mr. Peter Bell updated the Committee on the current state of insurance coverage for individuals with autism spectrum disorders. The cost of care is a major concern of families with members dealing with ASD. A study in 2007 by Michael Ganz showed that the incremental cost for a family of having a person with autism over their life was $3.2 million, and that the annual cost in the United States of autism was $35 billion. The percentage of children with autism whose conditions cause financial problems for their family is more than 40 percent, about twice that for children that do not have autism. Total family earnings of families with children with autism is about 21 percent less than children with other health needs and about 28 percent less than children with no other health limitations.

About 60 percent of those families received insurance from employers whose insurance policies are self-funded, meaning those companies take on the risk of providing the coverage for their employees themselves. This type of insurer is important because those companies are exempt from having to follow certain state laws on coverage. The other 40 percent of insurers do have to follow the state laws and have what are called fully-funded insurance policies. About 34 percent, or a little more than a third of children, are covered by Medicaid. And about 10 percent are not insured at all.

Mr. Bell and Autism Speaks have been working to ensure that all insurance programs cover the treatments and programs children and adults with ASD require. Just five years ago only one state had a law that required insurance coverage of autism treatments: Indiana. Since 2007, however, 31 additional states have passed laws that now require insurance companies to provide this kind of coverage.

There has been progress on this front working with self-funded insurers so that the 60 percent who are covered by private employers can receive the same treatment. Autism Speaks has also worked with the military and federal employee insurance programs on the same topic.

The Affordable Care Act will also be bringing beneficial changes to the insurance of individuals with ASD. Denials based on preexisting conditions are now prohibited. Dependents can now remain on their parents' health plan until the age of 26. Coverage for certain preventative services is now required, such as screening for autism and developmental delays and other disabilities.

A lot of progress has been made in the last few years alone, but work is still needed, especially in convincing the 28 remaining states who do not require coverage of ASD-related treatments.

Questions from the Committee

Mr. Robison asked if Mr. Bell could clarify what he meant when he referred to behavioral treatments for autism. Mr. Bell said it referred to any behavioral health treatment that was supported by evidence, ABA being the best example currently. Mr. Robison also asked if any entity was responsible for regulating behavioral therapies in the same way that the FDA regulates pharmaceutical interventions. Dr. Insel responded that no such entity exists to regulate behavioral treatment. Dr. Insel asked how Mr. Bell responded to claims from insurance companies that behavioral treatments are not as standardized or have the same quality control as prescription drugs, for example. Mr. Bell said that states are working to set up credentialing and/or licensing programs to deal with that issue. Dr. Mandell suggested that this is an area where the IACC can get involved, particularly by making it clear to insurance companies that habilitative and rehabilitative services cannot be separated when it comes to individuals with autism. Dr. Dawson pointed out that insurance companies often look to professional organizations to set standards for psychosocial therapies in cases where the federal government has no role in standards setting, as is the case with autism behavioral treatments. She has approached the American Psychological Association on this issue and they have agreed to take it on.

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Autism and Epilepsy: Clinical Profile across the Lifespan

Geraldine Dawson, Ph.D., Chief Science Officer, Autism Speaks

Dr. Dawson gave the Committee an overview of the medical field's current understanding of the relationship between epilepsy and autism.

Current estimates are that epilepsy affects about 15 to 30 percent of children with autism. In terms of long-term impact, it is associated with poorer outcomes in the domains of adaptive behavior, social outcomes, increased behavioral challenges, motor difficulties, and an association with increased mortality rate. There is a higher prevalence of epilepsy in individuals who have syndromic forms of autism, individuals with motor impairments, and those with intellectual disabilities. Epilepsy is more frequent in females with autism than males. In addition, the rate of epilepsy is about ten times higher among individuals with autism as compared to those with Asperger syndrome.

Another important finding is that epilepsy is associated with sleep disturbance, which is true not only for people with autism, but also for individuals with epilepsy who do not have autism. Sleep disturbances are associated with things like aggressive behavior, irritability and inattentiveness. Recent analysis suggests that it is the sleep disturbance, rather than the seizure activity itself, that it is contributing to irritability and inattentiveness observed in certain individuals with autism spectrum disorders.

It has become clear that the existing treatment and management guidelines that are available are inadequate. In order to solve this problem, the Autism Treatment Network, funded by Autism Speaks, and the Autism Intervention Research Network on Physical Health, funded by the Health Resources and Services Administration (HRSA), are developing physician guidelines for treatment of a wide range of medical conditions that are associated with autism, one of which is epilepsy. Those are anticipated to be published within the next year.

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Update on NIH/Autism Speaks/CURE Meeting on Epilepsy and Autism

Deborah Hirtz, M.D., Program Director, Office of Clinical Research, National Institute of Neurological Disorders and Stroke (NINDS)

Dr. Hirtz discussed with the IACC two recent conferences that have been held on the issue of autism and epilepsy. The first major meeting was a year and a half ago in New York, and it was sponsored by Autism Speaks, CURE, the Citizens United for Research in Epilepsy, and the International League Against Epilepsy. One of the results of that meeting was the formation of a workshop that was held this past May. The workshop was tasked with setting up a research agenda and to facilitate bringing the two research communities together.

One of the subjects discussed in the May meeting was the topic of what causes this increase in incidence of epilepsy among individuals with ASD to happen. Research about possible mechanisms is currently focused on two areas. One is what we call synaptic plasticity, or the ability of the brain to adapt developmentally to new learning. The other is looking at abnormalities or imbalances in the systems responsible for excitation and inhibition. Much higher risks for seizures are associated with too much excitation and not enough inhibition. Research is also looking at abnormalities in neurotransmission that you see with seizures which could also be leading to learning, social, and behavioral deficits.

As far as possible interventions, one exciting area of research is looking at patients with both autism spectrum disorders and epileptiform electroencephalograms (EEGs), either with or without seizures, as subjects in randomized, controlled prospective trials.

Bringing together the knowledge bases of the two research communities will also be critical, particularly the importance of looking for overlaps in databases in both conditions to integrate current knowledge, to look at the populations with autism to understand epilepsy, and vice versa. Databases can also be used to look for single-gene variants that can modify diseases, shared mechanisms, environmental factors and genomic factors common to both areas, and use that data to develop the best kinds of clinical trials.

Questions from the Committee

Mr. Robison asked about the possibility of behavioral treatments that might be able to prevent the onset of certain types of epileptic seizures. Ms. Lyn Redwood asked if the etiology of seizures was discussed and whether there might be a way to identify individuals who might become susceptible to seizures early on in their development. Dr. Hirtz said that there are research programs underway that will be looking at those issues.

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IACC Business

Susan Daniels, Ph.D., Acting Director, Office of Autism Research Coordination (OARC) and Executive Secretary, IACC

Dr. Daniels gave the Committee an overview of what the previous iteration of the IACC achieved in the last year. She presented the 2011 Summary of Advances, released in April 2011, which is an annual document that the Committee produces in which they identify 20 research findings that they feel are the most significant ones in the given year in biomedical and services research.

Dr. Daniels also introduced the 2010 IACC Portfolio Analysis. This document assists the IACC in fulfilling its requirement to monitor federal activities related to ASD. It also covers private funders who have volunteered to provide their data in order to get a more complete picture of what is going on across the nation in ASD research. The Portfolio Analysis informs the IACC, as well as stakeholders around the country, and perhaps in other countries, about the funding landscape in the U.S. and current directions in ASD research. It also helps the Committee monitor progress on fulfilling the different objectives in the IACC Strategic Plan and gives the Committee an opportunity to highlight gaps and opportunities to guide future activities and the update of the Strategic Plan.

In 2010, the IACC looked at the federal and private autism research funding and found that 82 percent out of the $408 million was federal funding, and about 18 percent was privately funded. A number of new funders were added this year, including the National Science Foundation (NSF), the Environmental Protection Agency (EPA), the Administration for Children and Families (ACF), and the Agency for Healthcare Research and Quality (AHRQ).

Progress is being made on achieving the IACC Strategic Plan objectives. In 2010, work was underway on 83 percent of the 78 objectives listed in the 2011 IACC Strategic Plan, in addition to two other objectives on which work has begun since the 2010 data were collected.

Questions from the Committee

Mr. Robertson asked for clarification regarding the additional training projects that were added to the 2010 Portfolio Analysis because some of them seemed to be more broadly related to developmental disabilities and not focused on autism. Dr. Daniels responded that it was an attempt to be more inclusive of programs that include autism, as many of the services agencies do not have autism-specific programs. She stated that the goal was to be comprehensive in the data collection to make everything accessible to the public so that they are aware of what information is available. Dr. Daniels also stated that it was clearly noted in the Portfolio Analysis that there was not an overall funding increase in these areas but that additional programs had been added. Ms. Lewis expressed concern that the lack of services research and funding is a critical issue identified by the IACC and that this report could overstate investments in those areas. She suggested that the Committee revisit this issue in the future to discuss how to account for autism versus autism-related programs to maintain consistency.

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OARC/IACC Updates – New Document and Web Releases

Elizabeth Baden, Ph.D., Policy Analyst, Office of Autism Research Coordination (OARC), Sara Dodson, Ph.D., Policy Analyst, Office of Autism Research Coordination (OARC)

Dr. Baden presented the IACC/OARC Portfolio Analysis Web Tool. All the data that has been compiled over the past few years is now available online. It can be browsed by project, funder, Strategic Plan question, Strategic Plan objective, or by subcategory. It can also be downloaded as a static PDF or as an Excel spreadsheet, enabling users to read and analyze the data to help answer whatever questions may arise.

Dr. Dodson introduced the ASD Research Publications Analysis, which maps all of the research publications to the IACC Strategic Plan so that interested parties can get a good idea of the research landscape and the level of activity that is happening across the Strategic Plan.

The Publications Analysis also looks at changes in autism research over time, including how much autism research has grown over the years. The analysis was carried out by developing an automated approach which first identified autism-relevant publications spanning from 1980 to 2010. The algorithm used a keyword approach to pull out autism publications, and it identified a little more than 25,000 autism-relevant publications published between 1980 and 2010. In 1980, there were roughly 200 autism publications that were produced. In 2010, which was the last year of the analysis, there were nearly 2,500 publications, which is a twelvefold increase from 1980.

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Planning Future Committee Activities

Thomas Insel, M.D., Director, National Institute of Mental Health, IACC Chair

Dr. Insel laid out the planning priority for the Committee, which is breaking up the IACC into subcommittees that can work on specific issues at a more granular level from now until the next full committee meeting. In the past, the IACC has been divided up into two working subcommittees, one focused on services and one focused on science. The IACC has to update the Strategic Plan by December 2012, so there is a lot of work to be done in a short period of time. Rather than trying to add many new objectives, Dr. Insel recommended looking at the questions and objectives that already exist in the Strategic Plan and assessing what we know now based on the research of the past few years and what we still need to know going forward in 2012.

Ms. Singer pointed out that publications and grants are only intermediary steps to providing real value to real people. She suggested focusing more effort into defining the appropriate metrics by which to measure value. She also emphasized the need to prioritize the objectives in the plan.

Ms. Redwood brought up the idea of a two-tiered approach of evaluating the Strategic Plan as it stands. One is whether or not these specific projects that we identified as being important have been funded. And, second, did they actually relate to improved health outcomes in ASD?

Dr. Dawson thought that it would help to have work groups that could assess where research stands in terms of gaps of knowledge, what has actually been learned and what has been achieved since the IACC was created back in 2000. She agreed that there is a need for some sense of prioritization.

Dr. Daniels pointed out that from an administrative standpoint it is possible to have sub-working groups under subcommittees. A subcommittee is an official entity that can vote and has all the FACA requirements.

Ms. Singer made a motion that the Committee vote on the idea of having two subcommittees, one to focus on services and one to focus on science/research, with the understanding that within the subcommittees, working groups can be convened that would bring in external expertise. Dr. Burton-Hoyle seconded, a vote was held, and the motion passed.

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Response to Public Comment

Due to time constraints, the Committee was unable to take time to address the public comments. Ms. Redwood suggested that a phone meeting be held in the coming weeks so that the Committee can respond to the public comments presented today. Dr. Daniels said she will work to convene a phone meeting for that purpose in the coming weeks.

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Closing Comments and Adjournment

Dr. Insel concluded by thanking the Committee members for their hard work getting through a packed agenda and that he looks forward to working with everybody on this difficult task moving forward. The meeting was adjourned at 5:06 p.m.

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Certification

These minutes of the IACC Full Committee were approved by the Committee.

I hereby certify that this meeting summary is accurate and complete.

/Thomas Insel/
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee

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