Minutes of the Interagency Autism Coordinating Committee (IACC) Full Committee Meeting on January 29, 2013
The Interagency Autism Coordinating Committee (IACC, also referred to as "the Committee") convened a meeting on Tuesday, January 29, 2013, from 10:00 a.m. to 5:00 p.m. at the William H. Natcher 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 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; James Ball, Ed.D., BCBA-D, JB Autism Consulting and Autism Society; Anshu Batra, M.D., Our Special Kids; James Battey, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD); Josephine Briggs, M.D., National Center for Complementary and Alternative Medicine (NCCAM) (for Francis Collins, M.D., Ph.D., Director, National Institutes of Health); Noah Britton, M.A., Bunker Hill Community College; Sally Burton-Hoyle, Ed.D., Eastern Michigan University; Matthew Carey, Ph.D., Left Brain Right Brain; Dennis W. Choi, M.D., Ph.D., Stony Brook University; Jose F. Cordero, M.D., M.P.H., University of Puerto Rico Graduate School of Public Health; Jan Crandy, Nevada Commission on Autism Spectrum Disorders; Geraldine Dawson, Ph.D., Autism Speaks; Denise Dougherty, Ph.D., Agency for Healthcare Research and Quality (AHRQ); Tiffany Farchione, M.D., U.S. Food and Drug Administration (FDA); Alan 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 Kimbark, Ph.D., U.S. Department of Defense (DoD); Walter Koroshetz, M.D., National Institute of Neurological Disorders and Stroke (NINDS); Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences (NIEHS) (for Linda Birnbaum, Ph.D.); David S. Mandell, Sc.D., University of Pennsylvania School of Medicine; John P. O'Brien, M.A., Centers for Medicare and Medicaid Services (CMS); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Cathy Rice, Ph.D., Centers for Disease Control and Prevention (CDC) (for Coleen Boyle, Ph.D., M.S. Hyg.); Scott Michael Robertson, M.H.C.I., The Autistic Self Advocacy Network (ASAN); John Robison, Self Advocate, Parent, and Author; Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF); Larry Wexler, Ed.D., U.S. Department of Education (for Michael Yudin)*
*Attended by phone
Call to Order, Opening Remarks, and Approval of the Minutes
Dr. Thomas Insel called the meeting to order and welcomed everyone. Committee members introduced themselves. Dr. Insel mentioned that Mr. Michael Yudin has replaced Dr. Alexa Posny as the U.S. Department of Education representative on the IACC and provided a short biography for Mr. Yudin. The Committee then approved the minutes from their last full meeting on December 18, 2012.
Thomas Insel, M.D., Director of the National Institute of Mental Health (NIMH) and IACC Chair
Dr. Insel provided a brief overview of select scientific advances in autism research that had taken place during the last few months. He mentioned that the science update is intended to provide an overview of trends in the science of autism that will be helpful for the Committee to know about in planning for the strategic plan or update. Dr. Insel noted that many of the issues that are now emerging from the literature are quite different than they were 4 or 5 years ago, with an interest toward thinking about what is changing before the symptoms of autism emerge. He added that one of the insights from research on Alzheimer's, Parkinson's, Huntington's, and many other brain disorders is that behavior is the last thing to change. Literature suggests that if one looks at brain responses to eye gaze or speech, even in the first year between 6-12 months, there are some striking differences in children who are at high risk, particularly those that will go on to have a diagnosis of autism by age 3.1,2 Dr. Insel added that an attempt is underway to put together genetic findings from approximately 230 genes for a potential diagnostic biomarker.3
Dr. Insel noted that, during the last 6 months, there has been an increasing interest in inflammation and immune responses. This interest is based to a certain extent on experiments with mice that experience an immune challenge during pregnancy. The offspring of these mice have both immune dysregulation in terms of peripheral markers and some striking behavioral changes that may be relevant to the social and communication deficits in autism.4 Dr. Insel mentioned the first positron emission tomography (PET) study out of Japan, published in January 2013, suggesting that adults with autism have the same pattern of microglial activation in the brain as control subjects, but that the levels of activation were higher in individuals with autism.5
Dr. Insel then gave a brief overview of a recent study from the Finnish birth cohort that analyzed 677 autism cases and 677 matched controls from 1987-2007. Looking at blood samples that were taken during the end of the first trimester/early second trimester measuring C-reactive protein (CRP), an inflammatory biomarker, researchers found that if you separate out the samples and compare the groups with the highest and the lowest levels of CRP, there is about a 45% increased risk for autism in the top fifth, and about an 80% increased risk for autism in the top tenth. This suggests that there may be something occurring in terms of inflammation at the end of the first trimester/beginning of the second trimester.6
He then spoke about a similar study, which looked at 100,000 children in Denmark to find a history of maternal influenza, infections, or high fevers. Researchers found that for mothers who had influenza during the mid-second trimester, there is about a twofold higher risk of having a child with ASD.7 However, he also noted that the authors were unsure if this result was real or if it was just a function of the many variables analyzed in the experiment; thus, further research should be conducted.
Dr. Insel next turned to the work on genetics relating to ASD. He directed the Committee to two papers in Neuron suggesting that identification of people who have a genetic lesion that has put them at risk for ASD is continuing to grow.8,9 He also discussed a study that found a twofold higher risk of ASD for people exposed to high levels of air pollution during pregnancy.10
Focusing on treatments, Dr. Insel mentioned that Arbaclofen, a GABAB (gamma-aminobutyric acid) receptor agonist, is being tested as an intervention for fragile X syndrome with mixed results; however, there have been positive results regarding social deficits and engagement, so a study with the drug is being launched in children with autism.11 Dr. Insel also pointed out a report from a supplement to Pediatrics that reviewed 300 papers on behavioral interventions for children and adolescents with ASD and found that there is not a strong evidence base for many behavioral interventions and that best practices of clinical trials, randomization, blinding, and careful attention to standardized outcome measures are missing from the literature.12 Dr. Insel recommended circulating the paper to IACC members and said that it serves as a wake-up call for the community.
He then drew the Committee's attention to a paper that showed the value of inclusive programs for individuals with ASD in comparison to disability-specialized programs based on comparing outcomes,13 as well as a paper that compared healthcare service use and costs for ASD with Medicaid and private insurance.14 Researchers found a fourfold difference between what people receive under Medicaid versus the lower amount received under private insurance and suggested that the difference in cost is related to additional outpatient treatments available to Medicaid recipients, particularly some of the behavioral interventions.
Dr. Insel noted that, based on the IACC's call for examining the issue of wandering/elopement, an Interactive Autism Network (IAN) survey was conducted and a paper was published in October 2012 showing that approximately 50% of families have a child with ASD that exhibits wandering behavior and in about a quarter of the cases, there is a real risk for danger.15 Dr. Insel observed that this is a good example of one of the ways that the Committee can have an impact.
New research was cited that indicates that while people seem to be improving in terms of their level of daily living skills during their adolescence and early 20s, there is a plateau effect that happens at around age 25 to 30, irrespective of the setting or diagnosis.16 Dr. Insel also mentioned a review of vocational interventions that determined that a more scientific approach to the issue is needed.17 The scientific update was concluded by discussing research where data from a previous study conducted in the mid-1980s was reanalyzed using current diagnostic criteria to assess whether or not these children would be considered autistic by today's methods. Reflecting changes in diagnostic criteria, the researchers felt that around 50% of children that were not classified as having autism in 1986 would have met the criteria in 2012.18
Comments on Science Update
Dr. Jose Cordero referred back to the paper on air pollution,19 mentioning that there are two papers also suggesting the same kind of association with prematurity and adding that the inflammation process seems to be a major contributor to prematurity. Dr. Insel noted that the same is true for C-reactive protein.
Dr. David Mandell said that there are two issues when looking at the disparities between public Medicaid coverage and private insurance, which are the large volume of community-based services that people can access through Medicaid but not through private insurance and the fact that medication use in Medicaid is a lot more expensive than private insurance. He added that, if advising someone who has a child with autism about how to maximize the healthcare receive, he would steer them to the public healthcare system. Ms. Idil Abdull mentioned her concerns about Medicaid not covering as much without the autism-specific waiver. Dr. Mandell responded by stating that although only nine States have the autism-specific waiver, people on Medicaid are still receiving a lot of Medicaid-reimbursed care relative to what is occurring in private insurance and there is a lot of money being spent on children through the Medicaid system. Mr. John O'Brien added that it would be helpful if people could help the Centers for Medicare & Medicaid Services think through how to improve the quality and appropriateness of services.
Reflecting on the study regarding inflammation during the prenatal period, Ms. Lyn Redwood expressed concerns about the current recommendation to vaccinate pregnant women, especially during the first and second trimester, with the flu vaccine. She stated that long-term studies of the effects of vaccine policy are lacking, and she advised that this issue remain on the radar screen as further research into inflammatory responses during pregnancy is conducted.
Mr. Scott Robertson commented that he hopes there can be more discussion on how to improve autistic adults' quality of life, including gaining accessing to employment in the community setting, and how to expand the breadth of research for lifespan issues. Dr. Insel added that as you go through the literature it is clear that there are two sides to the problem: the first is that there are real concerns about healthcare coverage, and the second is that there is not an evidence base to determine what should be covered.
Dr. Geri Dawson mentioned that a supplement20 to the journal Pediatrics in November 2012 reviewed medical conditions that are associated with autism and also outlined the first empirically based physician guidelines for the assessment and treatment of sleep, gastrointestinal problems, and attention deficit hyperactivity disorder in children with autism. She mentioned that Autism Speaks launched an independent non-profit affiliate called Delivering Scientific Innovation for Autism (DELSIA), which will partner with for-profit companies to facilitate the development of medicines, technologies, devices, and services that can improve the lives of people with autism. Dr. Dawson announced that Autism Speaks held its first annual professional and family conference in Columbus, Ohio, last summer. The next professional and family conference will be held in July 2013, and Autism Speaks will be holding its first autism investment conference in February 2013 in New York. She also mentioned that TRICARE has created a 1-year pilot program that will expand applied behavior analysis (ABA) to all military families and that ABA will be covered for Federal civilian employees by 67 of the 230 plans that are offered by the Federal Employee Health Benefits Program in 2013. On a less positive note, she pointed out that less than half of the States plan to include a behavioral health benefit for autism in the new healthcare exchanges that are part of the Affordable Care Act. She said that the IACC should provide advice around this serious issue.
Mr. Robertson shared a brief update on the Autistic Self Advocacy Network (ASAN). ASAN held its first leadership training academy last summer, during which 18 autistic college students learned leadership, self advocacy, and campus advocacy skills during a week-long workshop. ASAN will be holding its second leadership training academy this summer. Mr. Robertson mentioned that ASAN recently began a partnership on two new national centers on employment, which are funded by the Office of Disability Employment Policy at the Department of Labor. He also noted that ASAN will be releasing additional resources on college and employment in 2013 and 2014 and that ASAN is currently completing some research that has been funded by the National Institute of Mental Health related to autistic adults accessing healthcare services.
Ms. Jan Crandy asked several questions related to whether States that had the autism mandate passed for insurance are being included in the exchange, whether there have been questions about limitations to the number of visits due to the caps being lifted, and what reports have been received from States now that the mandates have passed. Dr. Dawson requested that Mr. Stuart Spielman of Autism Speaks respond to these questions. He said that while they were hoping for consistent nationwide coverage of ABA and other behavioral therapies as part of the essential health benefits required for all insurance exchanges, that has not happened. Dr. Dawson added that many States are vague about what kinds of services people should receive, so people with autism are being denied services such as ABA.
Mr. John Robison discussed his concerns that social communication disorder (SCD) was not included as part of the spectrum of ASD in the more recent Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and the lack of educational services that may result from its exclusion. However, the World Health Organization (WHO) is in the process of revising its International Classification of Diseases (ICD), and SCD could be included in that diagnostic tool as a subset of the pervasive development disorders. He recommended that the IACC suggest that in the upcoming ICD-11, SCD be added as a subset of pervasive developmental disorders, which could enable access to services for individuals with this diagnosis.
Dr. Walter Koroshetz mentioned that the American Academy of Neurology (AAN) is disseminating guidelines in the medical and behavioral treatment of autism and they have an open comment period until February 24, 2013. Dr. Insel asked Dr. Daniels to send a link for this to the Committee members.
CDC Minnesota Somali Project Update
Amy Hewitt, Ph.D., Director, Research and Training Center on Community Living, University of Minnesota; Marshalyn Yeargin-Allsopp, M.D., Chief, Developmental Disabilities Branch, National Center for Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention
Dr. Amy Hewitt provided an update to the IACC on the Somali Autism Surveillance Project in Minneapolis, Minnesota, including successes and challenges faced and future steps. Dr. Hewitt began by giving a brief overview of the State of Minnesota Department of Health's study,21 which originated due to concerns in the Minneapolis community about the unexpected high number of Somali children in preschool programs for children-with autism. While that study had a number of limitations, Dr. Hewitt noted that it was an important first step towards understanding autism prevalence in the Somali community.
Dr. Hewitt explained that in response to concerns about the number of Somali children with autism living in Minneapolis, the CDC, NIH, and Autism Speaks funded the University of Minnesota through a competitive announcement from the Association of University Centers on Disabilities (AUCD) to estimate the number of children with autism living in Minneapolis and to examine whether autism is more common among Somali children than non-Somali children. The adopted study methods were developed by the CDC and are used by the Autism and Developmental Disabilities Monitoring (ADDM) network. The ADDM network reviews health and special education records to identify school-aged children with autism. Data collected using this method can help explain if certain groups are more likely to be identified with autism than others. The project was initially funded for 1 year to encourage a timely response to community concerns. However, the State of Minnesota did not have an existing autism monitoring system in place, so an infrastructure for autism monitoring needed to be built, which took 8 months. Because building the infrastructure took so much time and resulted in delays, a 1-year cost extension to complete the autism monitoring activities was requested and approved in March 2012.
Dr. Hewitt went on to describe that an important component of the project has been community engagement, including establishing a community advisory board, hiring Somali community facilitators, hiring a Somali leadership liaison, and conducting outreach through community resources and meetings as well as through immigrant media sources. In addition, after hearing the community's concerns about disparities, additional research questions were added that will address potential differences in the level of functioning and service delivery between Somali and non-Somali children. CDC, NIH, and Autism Speaks have monitored the University of Minnesota's efforts throughout the project to ensure adherence to the CDC methodology. The next step is to finish the data collection and review and prepare the data for analysis. A communications workgroup has been established to prepare a community report that summarizes the findings in an understandable and useful way; the report is slated to be released this summer.
Dr. Marshalyn Yeargin-Allsopp added that not only will this project help understand how often autism occurs in Somali and non-Somali children in Minneapolis, but results could also promote awareness of autism, help plan and coordinate service delivery, and inform future research and advocacy efforts.
Questions from the Committee
Several Committee members expressed concerns that there are no results from the study to date. Dr. Yeargin-Allsopp responded that they thought it was important to update the IACC on the methods and progress in a preliminary way so that so that Committee would be prepared for the results once they are available. Dr. Dennis Choi commented that profiling Somali children elsewhere in the country would be valuable to provide context for the findings. Dr. Insel mentioned that this project was started with a lot of enthusiasm 3 years ago based on the sense that there could be an epidemiological cluster and asked whether there is a sense of what the next step will be based on the outcome. Dr. Yeargin-Allsopp responded that, regardless of the results, it is important to establish whether the prevalence is higher in Somali children in Minnesota because it will help in terms of provision of services and provide the opportunity to discuss what causes autism in the community.
Dr. Sally Burton-Hoyle applauded the study for supporting family members in the community and creating a network of supports within that community in Minneapolis. Ms. Abdull shared her concerns about autism silencing Somali children in Minneapolis and urged CDC to find a way to help all people with autism. Dr. Dawson commented that, if the numbers show that the prevalence is higher than one would expect based on the population rates, the plan has always been to then address why. She added that this study raises several bigger issues, including tremendous ethnic minority disparities, the fact that very little is known about prevalence estimates, and the lack of access to services. Mr. John Robison suggested that a study of the prevalence in Somalia would need to be conducted for additional context and that autism is defined and perceived differently around the world, which reinforces the need for a standard set of definitions.
Mr. Robertson commented that more research needs to be conducted on why there is not equal access to service and support resources for autistic adults and youth among diverse communities so that we can address this gap in diverse population groups. Ms. Redwood asked if this study is strictly looking at numbers or whether additional information about potential causes will also be provided, and Dr. Yeargin-Allsopp responded that the study was only designed to understand whether the prevalence is higher in Somali children compared to non-Somali children. Ms. Singer asked whether they could start working in parallel to prepare for additional studies if a difference in prevalence is identified, and Dr. Insel responded that they should wait until the results are released in the summer.
Update on Autism Prevalence in Puerto Rico
Jose Cordero, M.D., Dean, Graduate School of Public Health, University of Puerto Rico and IACC Member
Dr. Jose Cordero gave the Committee an update on a survey that was conducted in 2011 on autism prevalence in Puerto Rico. Puerto Rico has an autism coordinating committee that is led by the First Lady of Puerto Rico, co-led by the Secretary of Health, and comprised of the Director of the Institute on Developmental Disabilities, the University of Puerto Rico's Graduate School of Public Health, and parents and groups that care for children and adults with autism. The committee realized that there was no survey or data on the prevalence of autism in Puerto Rico and decided to conduct a telephone survey to obtain data on the prevalence.
The project was conducted by the Graduate School of Public Health on behalf of the Department of Health in Puerto Rico. For the survey, they used the methodology of the National Survey of Children's Health22 and the National Survey of Children with Special Heath Care Needs (NS-CSHCN).23 The survey was telephone-based, using random-digit dialing directed at residential telephones, and specifically looked at children ages 4 to 17. They ensured that every region of Puerto Rico was included because there are different health regions that are served under Medicaid by different contractors. They conducted nearly 47,000 calls; among those, there were nearly 5,700 households that had a child. The total number of children between 4 and 17 years old was 9,892. Of these, 154 children had autism. From that group, they conducted an interview that more deeply focused on healthcare needs and asked more detailed questions about the diagnosis of autism. Overall, they found the rate of autism prevalence in Puerto Rico to be 1.62%, or 16.2 per 1,000. Every region within Puerto Rico had a prevalence that was within that range. From that data, they tried to develop estimates of the population with autism and estimated that the total is between 19,965 and 21,822 people.
Using the ADDM network report that came out in 2012, Puerto Rico's prevalence rate of autism was a little lower than Utah and New Jersey and about the same as Arizona. Since Puerto Rico's population is 98% Hispanic based on the Census, the university also compared its findings to Hispanics in the National Survey for Children's Health (NSCH) and found that Puerto Rico's prevalence was a little bit higher but could still be within the range given the confidence limits. Dr. Cordero noted that they feel that the differences in prevalence between populations need to be evaluated.
Questions from the Committee
Dr. Cathy Rice inquired about whether they asked about current autism or whether the children had ever received an autism diagnosis, and Dr. Cordero responded that they asked both questions, similar to the design of the National Survey for Children's Health. Ms. Abdull asked whether they inquired about behavior and social skills during the interview, and Dr. Cordero responded that whether the child was classified as having autism was based on two questions regarding whether a health professional has ever told the person that their child has autism and whether their child currently has autism.
Dr. Koroshetz mentioned a CDC study that looked at autism in the Hispanic population in the United States and found that there was a much lower incidence of autism if parents were born overseas compared to parents born in the United States.24 He asked whether the CDC data has specific information about Hispanics that originated in Puerto Rico to look at the question of whether moving to the mainland is associated with a higher incidence. Dr. Cordero responded that while origin of birth is available on the birth certificate, maternal and paternal origin is not on the version of the birth certificate that is easily accessible. Dr. Rice added that in the ADDM network there is a linkage to birth certificates if the child was born in the same area, so it would be possible to do some follow-up analysis in areas that have a larger Hispanic community, such as Arizona.
Mr. Robertson asked whether there is any intention for future research to look at needs assessments in Puerto Rico, and Dr. Cordero responded that they did very extensive needs assessments that he did not present. He added that they found that the healthcare services needs are much greater, that children with autism in Puerto Rico had a lot more concomitant health conditions than has generally been reported in other countries, and that nearly 60% of those with health insurance coverage reported that they have to spend money out of pocket to cover the services of individuals with autism. Dr. Choi asked whether there have been other ethnically defined populations in the U.S. in which twofold differences in prevalence have been identified, and Dr. Cordero responded that he does not know but that he also must point out that there is a major difference in methodology between this study and ADDM network studies. Dr. Rice added that the ADDM network data are primarily split out by white, black, and Hispanic. Dr. Insel noted that when you define the population by ethnic groups, you are taking a very coarse approach to a heterogeneous sample.
Oral Public Comment Session
Ms. Amy Lutz, president of the EASI Foundation: Ending Aggression and Self-Injury in the Developmentally Disabled, spoke to the Committee about the prevalence of aggression and self-injury in the autistic community. Studies suggest that up to 30% of people with autism exhibit these dangerous behaviors to some degree, and research shows that aggression and self-injury are highly correlated to restraint, abuse, institutionalization, and a very low quality of life for afflicted individuals and their families. Ms. Lutz noted that this population is severely underserved and asked that the Committee consider three action items when shaping its strategic plan for the future. The items include recognizing that this underserved population of severely disabled autistic individuals exists and has completely different needs from high-functioning adults, investigating treatment options that target this profoundly disabled group, and expanding inpatient and outpatient psychiatric services to treat autistic individuals with harmful behaviors.
Ms. Dena Gassner, a licensed and UCEDD (University Centers for Excellence in Developmental Disabilities Education, Research, and Service)-trained social worker who has provided support to teens and adults with Asperger Syndrome and PDD-NOS for the past 6 years, expressed concern that we are not engaging in longitudinal studies to explore the emotional and physical implications of a lifetime of disenfranchisement from community resources and support. She added that, in her professional experience, the later the diagnosis, the more likely it will be complicated with co-occurring mental illness. She also stated that the massive denial of services to women with ASD must also be addressed. She noted that of the women she has served via her practice and in national training, she has not met a single woman who has not endured emotional, physical, and sexual abuse. She requested that the IACC name a professional woman who has an ASD and is highly qualified and trained to its panel.
Ms. Dawn Loughborough, a mother of a child with autism, expressed to the Committee that the IACC should coordinate medical concerns in autism, including developing an integrative autism medical care model similar to St. Jude Children's Research Hospital's quality of care approach to children's cancer. Coordinating such an approach will help ready hospitals and clinics in the mainstream medical practices for patients with autism, improve quality of care, and lower the costs of autism treatment. She noted that an overwhelming observation from parents is that their children are changing after vaccines and that 50% of Americans are vaccinating on alternative schedules because they have lost faith in the national vaccine program. She added that in addition to appropriate medical treatments, integrative services such as speech therapy, occupational therapy, and wellbeing and social development interventions are imperative.
Mr. Jake Crosby, an MPH candidate studying epidemiology at GW School of Public Health and Health Services and a contributing editor to Age of Autism, stated that his general opinion of the IACC has not changed and that he still believes that the Committee is merely a "tool" of the NIH implicated in covering up the causal role vaccines play in the autism epidemic. Mr. Crosby noted that that he has had conversations with several key federal members of the IACC, including Dr. Collins and Dr. Insel, confirming his beliefs.
Ms. Megan O'Boyle read comments on behalf of Ms. Geraldine Bliss, a mother of a 14-year-old child with autism and epilepsy. Ms. O'Boyle spoke about Phelan-McDermid syndrome, which is caused by deletions of 22q13 and mutations of the SHANK3 gene and is highly associated with autism. She noted that the Phelan-McDermid community is very excited about a number of different SHANK3 knockout mouse models but stressed that in order to develop new drugs to improve the life of her son and others, many projects are needed and they depend on well-validated model systems to be made widely available to the scientific community. She urged the IACC to look at work that the Simons Foundation has begun to do using mouse models.
Optimal Outcomes in Individuals with a History of Autism
Deborah Fein, Ph.D., University of Connecticut, Board of Trustees Distinguished Professor, Department of Psychology, Department of Pediatrics
Dr. Fein presented to the Committee a study conducted on "optimal outcomes" in children with autism. 25 She began by providing some background on previous studies. Most longitudinal studies report that between 3% and 25% of individuals who are followed over time no longer meet criteria for autism on followup.26 However, most individuals no longer meeting criteria for ASD still show significant impairment in social and/or language functioning.27,28 Many people have discussed the initial study published by Dr. Lovaas in 1987, in which about half of a group who received 40 hours of ABA successfully completed regular first grade in a public school and had an average or better score on IQ tests.29 There have been numerous attempts to replicate that result over the years, and they generally report some children reaching this outcome but not as many as Lovaas. Dr. Peter Mundy pointed out that normal IQ and functioning in regular education is possible in high-functioning autism and does not by itself constitute losing the diagnosis. 30
The purpose of these optimal outcome studies was to provide a firmer scientific basis for the many reports that clinicians have made regarding children who have lost the diagnosis of autism and genuinely appear to be functioning indistinguishably, in terms of language and social functioning, from children who were never on the spectrum. Dr. Fein's group wanted to document the phenomenon in which children with a clear history of ASD no longer meet criteria for ASD, and in whom there are no significant social or language problems; to explore residual problems that may illuminate core deficits or suggest additional remediation or support needed; and to explore mechanisms of optimal outcome by tracking intervention and structural and functional imaging differences.
For the current study, Dr. Fein's group developed specific inclusion criteria for all subjects, optimal outcome individuals, individuals with high-functioning autism, and those with typical development. Extensive data collection included measurements of cognitive, social, executive, language, academic, and psychiatric functioning; intervention, medical, and developmental history; structural and functional imaging; and four experimental tasks (top-down processing, categorical induction, tone discrimination, and dual task performance). Of the children in the study, 44 had high-functioning autism, 34 were optimal outcome, and 34 had typical development. The age range was 8 to 21 years old. The study found that the optimal outcome group showed no obvious social, language, or cognitive difference from the typical development group; predictors of optimal outcome are similar to predictors of good outcome in general (higher cognitive and motor functioning and milder social symptoms); high rates of repetitive behavior do not preclude optimal outcome; the optimal outcome group does not show head circumference growth different from persisting ASD; the optimal outcome group had about an above average IQ; and there are residual deficits or vulnerabilities in the optimal outcome group (anxiety and attention).
Dr. Fein also mentioned a paper currently in press that looked at reading, decoding, passage comprehension, written expression, and math problem solving and found that all three groups performed in the average range on all subtests and there were no significant differences between the optimal outcome and typical development group. 31 However, the high-functioning autism group scored significantly lower on reading comprehension and math problem solving. Dr. Fein indicated that one of the most interesting questions that will be examined is psychiatric outcomes. The most common co-occurring conditions reported for ASD in the literature are anxiety, obsessive compulsive disorder, tics, depression, attention deficit hyperactivity disorder (ADHD), and oppositional defiant disorder. As many as 70% of individuals with ASD have one co-occurring condition, and 41% have 2 conditions.32
Dr. Fein mentioned that a large-scale epidemiological study with good intervention would need to be conducted in order to determine what percentage of children with ASD can reach optimal outcome; however, based on a small prospective study in her group as well as other studies, it appears that 10% to 25% could reach this outcome.
Dr. Fein indicated that she had received numerous questions from the media regarding this research, many of which are unanswerable. They will try to determine whether behavioral intervention is necessary to achieve an optimal outcome; however, the data are likely to be complex and a definitive answer may not emerge. They will not be able to determine whether the children that lost their diagnosis have a distinct set of genetic or environmental etiologies. Looking to the future, Dr. Fein would like to follow the study cohort to age 8 or 10 to get a better estimate of the number of children that may be able to reach this outcome. She also noted that the current study was not a very diverse sample, geographically, socioeconomically, or ethnically, and that it would be very important to include much more diversity in future studies.
Dr. Fein concluded by noting that children do not generally grow out of autism and that the findings are not an argument for less early detection and intervention, but for more.
Questions from the Committee
Mr. Robertson noted his concerns about grouping individuals who have come up as autistic on the Autism Diagnostic Interview (ADI) into the optimal outcome group (indicating that they were previously autistic but now are not) because they may have compensated for challenges by learning strategies that have helped them adapt and mask many of the traits. Mr. Robison pointed out that in his opinion, simply losing a diagnosis does not necessarily constitute an "optimal outcome," but instead an "optimal outcome" would include having the ability to live independently, obtain a job, support yourself, and have a family. He added that it is vitally important that middle-aged people with an optimal outcome be studied to determine the keys to their success.
Ms. Redwood mentioned that a lot of families use alternative and complementary medicine and asked whether there is a way to tease out what might be a recipe for obtaining the optimal outcome. Dr. Fein responded that that would be wonderful and that they will publish whatever they find, but the fact that it is a prospective study could make it difficult. Ms. Crandy asked whether they tracked the intensity of interventions, and Dr. Fein responded that they did. Ms. Abdull and Ms. Singer followed up on Mr. Robison's comment, noting that the definition of an "optimal outcome" is very subjective. Dr. Batra asked what motor markers were used in the study, and Dr. Fein responded that they used Vineland Adaptive Behavior Scales for gross motor measurement as well as the Mullen Scales of Early Learning.
Studies of Health Outcomes in Children with Autism and Their Families
Anjali Jain, M.D., The Lewin Group; Craig Newschaffer, Ph.D., AJ Drexel Autism Institute, Drexel University
Dr. Jain presented to the IACC a study on health outcomes in children with autism and their families. The overall objective of the study was to use existing administrative data to further understanding about ASD, including diagnosis, risk factors, health outcomes of children with ASD and their family members, and healthcare use by children with ASD and their family members. The deliverables for the project include five reports that are final and complete but have not yet been disseminated, three manuscripts, and a dataset delivered to the National Database for Autism Research (NDAR). Dr. Jain gave a brief overview of administrative claims data, which are data submitted by providers, sometimes by patients and families, to health insurance companies that primarily include information for billing purposes. Procedures and services not covered by the health plan (e.g., ABA and speech therapy offered at school) are not included. It also usually does not include all of the clinical information related to an individual.
For this study, the researchers looked at the time period between 2001 and 2009. They were able to review medical information, including diagnosis codes, procedure codes, some provider characteristics, and cost/payment; pharmacy information, including prescriptions that were filled; mental and behavioral health information; sociodemographic information; family linkage; and geographical representation.
Within the study sample, over 46,000 children had at least one diagnosis claim with an ASD, and the comparison group (children without an ASD claim) consisted of more than 138,000 children. The researchers also retrieved data for all of their parents, siblings, and/or other household members and developed algorithms to identify the father, mother, and sibling(s). Approximately 80% of the children with ASD were male, and just over half of the sample was between 2 and 10 years of age. Race and ethnicity information was not available for about half of the children; however, when it was available, about 75% of the sample was white, which is similar to data from other private insurers.
Using approximately 430 medical charts, the researchers assessed the extent to which a claim with an ASD diagnosis was confirmed by clinical information in the physician's chart and, based upon that assessment, decided to only include children with two or more ASD diagnosis codes in claims as having ASD (a total of 33,565 children).
The study examined a number of conditions among the sample population, including infectious diseases, autoimmune conditions, gastrointestinal disorders, injuries, trauma, and metabolic dysfunction. Among the key findings of the study was that children with autism have higher percentages of neurological disorders and mental health conditions compared to children without ASDs. However, overall almost every group of conditions had a significantly higher percentage in the children with autism compared to children without autism. Dr. Jain and her colleagues also looked at siblings of children with autism compared to the siblings of the control group and found that they have a much higher rate of almost every condition.
The researchers conducted more detailed multivariate analysis for several topics and controlled for gender, race, and income when it was available, as well as co-occurring conditions. They studied the occurrence of gastrointestinal (GI) conditions in children with ASD compared to those without ASD and how the occurrence of GI conditions changed after the ASD diagnosis compared to before the ASD diagnosis. Results indicated that children with ASD were much more likely to have a GI condition than children without ASD and the odds of having a GI condition were higher in the 12-month period after the ASD diagnosis than the 12 months before diagnosis. They also studied the occurrence of stress-related conditions in parents of children with ASD compared to parents of children without ASD and the occurrence of stress-related conditions following their child's initial ASD diagnosis compared to before the diagnosis. The researchers found that parents of children with ASD had higher odds of having a stress-related condition than parents of children without ASD and that among parents of children newly diagnosed with ASD, the odds of having a stress-related condition were higher in the 12-month period after the child's diagnosis than in the 12-month period before diagnosis.
Results from the study indicated that children with ASD had an average of 21 total healthcare visits annually, compared to 5 children without ASD. Children with ASD also had more behavioral health visits (11) compared to less than 1 for children without ASD, and, on average, they had more medication use.
The researchers also conducted a more detailed analysis to try to understand whether or not having a diagnosis of autism in an older sibling resulted in a change in the vaccination status of a younger sibling. They found that younger siblings of children with ASD were less likely to be vaccinated with the first mumps, measles, and rubella (MMR) vaccine than their older siblings with ASD and younger siblings of children with ASD were less likely to be vaccinated than younger siblings of children without ASD.
Dr. Jain also discussed two papers that are under review for publication on the topics of injury of children with ASD and psychotropic medication use and polypharmacy in children with ASD. Overall, the researchers found that after controlling for co-occurring conditions, children with autism have a lower rate of injuries than children without ASD. In terms of psychiatric medication use, they found that approximately 35% of children with autism were using more than one medication at the same time and that 60% were using psychiatric medications at any time.
For the last part of the study, the researchers assessed whether claims data could be useful in future research to examine the following risk factors for ASD: early life risk factors in children, maternal risk factors during pregnancy and prior to conception, and paternal risk factors prior to conception. They included risk factors that would be captured in claims such as preterm birth, chronic maternal health conditions prior to pregnancy or during pregnancy (e.g., asthma and depression), medication use, anesthesia use, infertility treatment, and early immunizations. They concluded that these types of studies could be possible.
Dr. Jain summed up her presentation by recapping the relative strengths and weaknesses of claims data analysis. The strengths include a very large dataset covering a long span of time, as well as the ability to link data for the individual with ASD to members of their family, enabling analysis of familial impact of autism. Limitations of the data are that the severity of ASD is not well-reported and that diagnoses that do not impact payment (e.g., obesity) are likely under-reported because no claim is submitted.
Questions from the Committee
Mr. Robison asked whether health insurance data extends far enough along the lifespan to predict mortality risk and differences for the autistic versus non-autistic population. Dr. Jain responded that hypothetically the potential is there, but the problem would come in following one individual over the lifespan because they are likely to change health insurance plans. Dr. Newschaffer added that surveillance bias could also influence those data, because individuals with any chronic condition are more likely to have an opportunity to be diagnosed with other conditions, so the results need to be interpreted with caution. Mr. Noah Britton asked whether there were any measures that were calculated in which the odds ratios were negative, and Dr. Jain responded that she did not recall any. Dr. Newschaffer added that they did not pick any conditions for which they would expect to see no differences, which would have been an interesting sensitivity analysis to undertake.
Dr. Donna Kimbark asked whether they were considering teasing out the data for prenatal environmental factors, and Dr. Jain and Dr. Newschaffer responded that there is a potential opportunity to do that but it will depend upon whether there is richness of diagnostic coding detail to tease out the different types of exposures. Mr. Robertson expressed concerns that some of the insurance data may not represent an exact linkage to the conditions. Ms. Redwood asked several questions, including whether they were planning papers in addition to the two outlined, whether they could also review immune globulin administration during pregnancy, and whether the researchers would be able to look at vaccines administered during pregnancy and in the early post-natal period. Dr. Jain responded that they are planning more papers and that they can include information regarding immunoglobulin if it is in the clinical records. She indicated that they would like to look at issues around immunization as well. Mr. O'Brien and Dr. Insel asked whether the data can be teased out to look at behavioral interventions beyond medication, and Dr. Jain responded that it could as long as it is covered under the insurance.
National Children's Study Update
Alan Guttmacher, M.D., Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development and IACC Member
Dr. Guttmacher provided the IACC with a brief overview of the National Children's Study (NCS), which is a longitudinal study of 100,000 children who will be followed from either before or at birth through the age of 21 to try to understand the interactions of environmental influences and biological factors in growth, health, and development. It is the largest U.S. long-term study of child health and development ever conducted.
There are three major components to this study, including the pilot study, which includes between 4,000 and 5,000 children and began in 2009 at 40 geographically diverse sites across the United States; the main study of about 100,000 children, which is slated to begin in 2013, with children enrolling in 2014; and shorter-term methodology studies. For the main study, the recruitment will be through healthcare providers through either a birth or prenatal cohort.
The study population should include a number of children with autism that is proportional to the prevalence rate. With the assessment schedule currently planned for the NCS, children in the study could be diagnosed with autism as early as 18 months. NCS has also invested in formative research to see if autism screening sensitivity and specificity for all children can be improved. A current multisite study on autism assessment tools will conclude later this year. It compares a battery of three brief novel assessments (a video-guided parent self-report, a parent interview, and a direct observation) that could be implemented by NCS field staff if any of them compare favorably to the "gold standard" of ASD diagnosis confirmation. Study results are expected to be available in 2013.
Thomas Insel, M.D., Director of the National Institute of Mental Health (NIMH) and IACC Chair; Susan A. Daniels, Ph.D, Acting Director, Office of Autism Research Coordination and IACC Executive Secretary
Dr. Daniels gave the Committee an overview of its responsibilities under the Combating Autism Act (CAA) and the Combating Autism Reauthorization Act (CARA) and mentioned that the new 2012 IACC Strategic Plan Update would be publicly released later in the week. She then mentioned that the 2013 Strategic Plan would need to be completed by the end of the year and asked the Committee what kind of product they would like to produce. Dr. Insel mentioned that while the strategic plan is largely about science, there has been a great deal of interest around services and adults, and asked the Committee for input regarding what the IACC's role should be regarding these issues.
Mr. Robertson commented that thought should be put into looking at unmet needs across the entire lifespan and figuring out what the IACC can do to meet those needs through research and other means. He also felt that the potential of technology hadn't been emphasized as much as it could have been in previous Strategic Plans and wondered if the IACC was confined to the format of the previous Strategic Plan or if it could be altered. Ms. Singer commented that the Committee needs to look at the CAA and the CARA legislation as a floor—not as a ceiling—that outlines the minimum that the IACC needs to deliver. She recommended that the IACC think about creating a roadmap for services implementation and delivery that would parallel the research strategic plan.
Dr. Insel noted that we are at a very critical point in time with the Affordable Care Act (ACA) being implemented, so there is urgency. Dr. Dawson noted that she sees two separate components: the first is to develop a set of immediate recommendations that the IACC could make to Secretary Sebelius (Secretary of the Department of Health and Human Services (HHS)) and Congress around items that need to be urgently completed and do not require research, and the second is to develop a set of targeted research questions that need to be addressed. Mr. Robison suggested formulating letters to be sent to the Secretary and Congress around these issues. He also recommended asking that the appropriate Federal agencies spend more research efforts to validate studies to determine which existing therapies are best to encourage insurance companies to cover them. Dr. Kimbark noted that DoD is focused on applied and translational research and that, going forward, the IACC should push for research into services. Dr. Lawler spoke about dissatisfaction with how the Strategic Plan is currently updated and how progress is evaluated from year to year in that progress is generally evaluated by noting recent updates in published research, which is far upstream from the real-world impacts that are desired from the research investments.
Ms. Redwood brought up the possibility of having the full in-person IACC meetings last for 2 days rather than 1 day to discuss these important issues. She also voiced support to keep the current Strategic Plan format, but to spend time assessing what has been accomplished and where the gap areas remain with regard to the specific objectives. Dr. Rice also recommended maintaining the current Plan, but that if the IACC decides to focus on services in some way, then the product developed needs to have the same level of priority as the current research plan. Mr. O'Brien noted that whatever is developed needs to be digestible to a number of audiences, and Dr. Batra added that it needs to also be easily accessible and validated. Ms. Abdul emphasized the importance of coordination to provide parents with a roadmap to navigate their child's disorder, from diagnosis to services. On a different note, Dr. Koroshetz mentioned that it would be extremely useful to build a sensitive tool that could be used to measure severity across the entire spectrum.
Dr. Mandell noted that, in light of the pending policy changes in the United States, he believes the IACC should focus on the Affordable Care Act (ACA) and what Medicaid expansion will look like to develop very specific recommendations that fit into the language and the current infrastructure of the organizations that pay or will pay for care. He also spoke to the issue of social justice, and noted that people with disparities don't get care in the healthcare system; they receive care in the education system, and this should be kept in mind when developing policies. Dr. Mandell also emphasized the importance of producing culturally appropriate materials; however, he also stated that this places the burden on the family to find care. Instead, focus should shift to the system so that improvements have the potential to ameliorate disparities on a much greater scale.
Mr. Robison suggested that if recommendations are made to the Secretary of HHS, then one set should pertain to the needs of children that have been diagnosed and their families, and another set should pertain to adults that may have escaped diagnosis until they were middle-aged. For this second group, there should be increased focus on how the medical system can help these individuals and what services are needed or need to be developed.
Dr. Guttmacher encouraged the group to think strategically about a few targeted areas where they could have a once-in-a-generation type of impact, such as unusual scientific opportunities or changes in insurance coverage. Dr. Dawson recommended defining priority areas, such as prevention and causes, healthcare and disparities, and adult outcomes. Within these areas, the IACC could consider 3 levels of action: 1) immediate policy recommendations to make to the Secretary of HHS and Congress; 2) define the prioritized research studies that should be conducted; and 3) long term visioning regarding treatment development (and other areas), including which investments should be made to continue making scientific progress.
Dr. Insel noted that if the IACC wants to dig deep into the issue of adult outcomes, the Committee may need to invite other Federal departments, including the Departments of Labor, Justice, and Housing and Urban Development. Mr. Robertson recommended that the IACC prioritize items that can be accomplished more quickly and items that will take longer. He also pointed out that with adult treatments and interventions, there are no studies to replicate, because the initial research has not yet been conducted. Dr. Daniels noted that the IACC can work within the two existing subcommittee structures—the Services Research and Policy Subcommittee and the Basic and Translational Research Subcommittee—to develop several statements or letters by July, if that was what the Committee wanted to do. Dr. Insel recapped that some of the ideas for the subcommittees to work on in developing letters or policy statements included disparities, developing the evidence base for treatments, and adult outcomes; Dr. Dawson added environmental influences to that list. Ms. Redwood noted that the Committee should include a position statement indicating that individuals with ASD deserve the same level of medical care as those without ASD. Ms. Abdull added that the IACC needs to recommend services and therapies with the existing research and that the IACC should start small so that Federal agencies are not overwhelmed. Members of the Committee agreed that the 2013 Strategic Plan should focus on accountability and prioritizing.
Dr. Daniels suggested that the Committee work within the structure of the two subcommittees to begin prioritizing and executing projects. Dr. Dawson had reservations about using the existing subcommittee structure and proposed setting up new working groups, but Dr. Daniels suggested that it would be administratively more efficient to use existing structures rather than creating new structures, as valuable time could be lost in setting up new structures. Dr. Daniels suggested a timeline of beginning work on policy projects in the subcommittees from the spring through July and then beginning work on evaluating the strategic plan in July through the rest of the year. Ms. Redwood asked if all projects could be run in parallel, and Dr. Daniels replied that due to staffing constraints and other currently ongoing projects such as the Summary of Advances and Portfolio Analysis, plus anticipated projects such as the 2013 Combating Autism Act Report to Congress, starting many parallel projects would not be feasible. Ms. Redwood suggested that OARC be granted additional staff to enable the committee to take on more projects immediately. Dr. Insel came back to asking the committee to prioritize projects.
Dr. Mandell noted that he believes that the first priority of the IACC should be to focus on the immediate issue of the essential healthcare benefits of the Affordable Care Act (as they relate to behavioral health benefits) and second on the Medicaid expansion, including how this could impact adults with autism that may be newly eligible for healthcare services. Mr. Peter Bell from Autism Speaks agreed and said that he believes it would be very powerful and helpful to send a letter to the Secretary of HHS with some kind of recommendation to support the fact that the essential health benefits in every State exchange should include behavioral health treatments, as passed by Congress. Dr. Dougherty added that the insurance expansion was a research opportunity to collect data on people who get coverage for those services.
Dr. Daniels suggested a process whereby Dr. Mandell could draft the letter of recommendation to the Secretary, and then the Committee could vote on it via email. Committee members agreed with this approach. Dr. Daniels added that she would work with the co-chairs of the two subcommittees to convene phone meetings within the next month to discuss other specific projects.
Public Comment Discussion Period
Due to time constraints, the Committee deferred the time period that had been planned for committee discussion of public comments that had been heard earlier in the day and received in writing.
The meeting was adjourned at 5:05 p.m.
These minutes of the IACC Full Committee were approved by the Committee on March 19, 2013.
I hereby certify that this meeting summary is accurate and complete.
Thomas Insel, M.D. /s/
Chair, Interagency Autism Coordinating Committee
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