Minutes of the Interagency Autism Coordinating Committee (IACC) Full Committee Meeting on July 9, 2013
The Interagency Autism Coordinating Committee (IACC) convened a meeting on Tuesday, July 9, 2013, from 9:00 a.m. to 5:30 p.m. at the National Institutes of Health in Bethesda, Maryland.
In accordance with Public Law 92-463, the meeting was open to the public. Thomas 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., IACC Executive Secretary, 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); Linda Birnbaum, Ph.D., National Institute of Environmental Health Sciences (NIEHS); Coleen Boyle, Ph.D., M.S. Hyg., Centers for Disease Control and Prevention (CDC); Josephine Briggs, M.D., National Center for Complementary and Alternative Medicine (NCCAM) (for Francis Collins, M.D., Ph.D.); Sally Burton-Hoyle, Ed.D., Eastern Michigan University; Matthew Carey,* Ph.D., Left Brain Right Brain; Judith Cooper, Ph.D., NIDCD; Jan Crandy, Nevada State Autism Treatment Assistance Program; Geraldine Dawson, Ph.D., Duke University; Denise Dougherty, Ph.D., Agency for Healthcare Research and Quality (AHRQ); Tiffany Farchione, M.D., 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); Sharon Lewis,* Administration for Intellectual and Developmental Disabilities; David Mandell, Sc.D., University of Pennsylvania; John 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., CDC; 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 (ED)
*Note: Attended by phone.
Roll Call and Opening Remarks
The Interagency Autism Coordinating Committee (IACC) convened July 9, 2013. Dr. Susan Daniels called the meeting to order at 9:00 a.m. She noted that Dr. Thomas Insel would be joining the meeting later in the day. Dr. Alan Guttmacher chaired the meeting in Dr. Insel's absence. Dr. Daniels called roll. She noted that the meeting materials – including a bibliography with hyperlinks for the Science Update – were available online.
Dr. Guttmacher noted that Dr. Dennis Choi had stepped down from the Committee. Dr. Geraldine Dawson said that she was transitioning from Chief Science Officer at Autism Now to professor of Psychiatry and Behavioral Sciences, Pediatrics, and Psychology and Neuroscience at Duke University.
Approval of Minutes
The Committee then voted to approve the minutes from the April 9, 2013 meeting of the IACC with two changes.
Racial and Ethnic Differences in Subspeciality Service Use by Children With Autism
James Perrin, M.D., Professor, Pediatrics, Harvard Medical School, and Director, Center for Child and Adolescent Health Policy, and President-Elect, American Academy of Pediatrics (AAP)
Dr. James Perrin discussed the results of a paper from the July 2013 issue of Pediatrics1 on racial and ethnic difference in subspecialty service use by children with autism. In this study, the researchers examined clinical registry data for patients with ASD aged 2-12 years with medical visits from 2000 to 2011. They examined the rates of subspecialty visits and procedures for gastroenterology/nutrition, neurology, or psychiatry/psychology, based on ICD-9 codes. More than three-quarters (81 percent) of this population (N=3,615) were white, 7 percent were Latino, and 5 percent were African-American. They found that after adjusting for gender, age at visit, and insurance, African American and Latino children were a third as likely to have had a GI/nutrition visit compared with white children. African American children were half as likely to have neurology visits and Latino children were even less likely. African-American children also were almost half as likely to have psychiatric/psychological visits and Latino children also were less likely to have these visits. Subspecialty procedures were also less likely among for African-American and Latino children compared with white children. Interestingly, developmental testing was more common among African-American and Latino children. Dr. Perrin suggested several possible explanations for the differences, including presentation or severity, physician or parent referrals, or referral followup.
Questions from the Committee
Dr. Larry Wexler asked if there were differences in insurance between white and nonwhite children. Dr. Perrin said that African-American children had much greater use of public insurance than white children. He pointed out that the researchers had controlled for insurance in their analysis. Dr. David Mandell asked if there was enough difference in the odds ratios for different procedures that might allow the analysis of potential reasons for the disparities. Dr. Perrin said that the sample size was probably great enough to allow this type of analysis. Mr. John Robison asked about disparities between African-American and white patients across this health system. Dr. Perrin said that they have seen differences in subspecialty use between the two groups of patients. He speculated that in part these differences may be due to transportation barriers for African-American patients. Ms. Idil Abdull commented that parent education about ASD treatments and interventions could be a barrier to subspecialty care as well. In addition, Medicare provides coverage barriers for specialty care.
Commentary on Parent-Physician Efforts to Address Wandering
James Perrin, M.D., Professor, Pediatrics, Harvard Medical School, and Director, Center for Child and Adolescent Health Policy, and President-Elect, AAP
Dr. Perrin said that roughly half of children with ASD wander, based on data from a major survey on wandering and elopement conducted by the Interactive Autism Network (IAN).2 A quarter of children were wandering enough that it was dangerous and worrisome. Dr. Perrin said that the primary role of pediatricians should be to prevent wandering. He said that AAP was working to educate pediatricians about the problem. In 2012, the AAP published an updated Autism Toolkit for physicians.3 This resource includes handouts for parents that address wandering. Dr. Perrin said that the IACC had been instrumental in developing an ICD-9 code for wandering (V40.31). However, when his staff checked several large databases, they found that the code was not being used by clinicians. Dr. Perrin said that it was not surprising that the code had not been more widely used. He noted that very few public or private payers reimburse clinicians for listing this V-code service. Therefore there is very little incentive to use V-codes. Dr. Perrin said it is important to make pediatricians more aware of tools for children with ASD.
Questions from the Committee
Ms. Alison Singer said that the wandering factsheet in the AAP autism toolkit was a good resource but noted that clinicians had to purchase it; this could provide a barrier to pediatrician education about wandering. She asked what advocates could do to encourage pediatricians to talk with families about wandering, suggest resources, and make referrals. Dr. Perrin said that AAP includes autism and wandering as part of continuing medical education (CME) for pediatricians. Ms. Singer asked if it would be possible to include a session on autism and wandering at the next AAP annual meeting. Dr. Perrin said that the 2013 program had already been finalized for the October meeting. However, he said that he would suggest this idea to the planners of the 2014 conference. Dr. Walter Koroshetz suggested an IACC editorial in Pediatrics on wandering. Dr. Coleen Boyle suggested creating a physician factsheet on wandering. Dr. Perrin added that the AAP could include parent information on wandering on its Healthy Children website, which is aimed at parents. He said that AAP was currently reorganizing its communication structure to improve the dissemination of information to clinicians and parents. Ms. Lyn Redwood said that the National Autism Association (NAA) has a wandering toolkit available for caregivers – Big Red Safety Toolkit (PDF – 6 MB) – that might be useful for the AAP. She said that there is a lot of information that should be included in an AAP initiative on wandering, including information for first responders, information on safety devices, resources for parents, and training. Dr. Perrin said that the AAP was interested in collaboration with the IACC.
Panel on Comorbid Conditions in People With Autism
Comorbidities Among Patients Served by the Autism Treatment Network
James Perrin, M.D., Professor, Pediatrics, Harvard Medical School, and Director, Clinical Coordinating Center, Autism Treatment Network
Dr. Perrin briefly described the Autism Speaks' Autism Treatment Network (ATN), which is a collaboration of medical centers that provide coordinated multidisciplinary care for families of autistic children. These children often have comorbid medical conditions. The ATN registry includes more than 6,300 children. A description of the ATN and its registry is available online as a supplement to the journal Pediatrics.4 Dr. Perrin noted that there are several symptoms and conditions that co-occur with ASD, including gastrointestinal (GI) and nutrition symptoms and disorders, epilepsy, sleep disorders, and other mental health conditions. He noted that half of children in the registry had any parent-reported GI symptoms in the past 3 months. In addition, 16 percent of a population of 2,569 children with autism experienced seizures. Dr. Perrin noted that children with seizures also had greater rates of GI and sleep disorders. He mentioned a study5 of registry data for 1,193 children aged 4-10 years, in which more than half (54 percent) had mild sleep problems and 18 percent had moderate to severe sleep problems. Dr. Perrin noted that clinicians were somewhat discouraged from making diagnoses of other psychiatric disorders – such as attention-deficit hyperactivity disorder (ADHD) – using the Diagnostic and Statistical Manual of Mental Health Disorders (DSM-IV-TR)6. Therefore, numbers from the registry likely underestimated the prevalence. More than a third (37 percent) of children in the ATN registry were estimated to have high scores on the attention subscale of the Child Behavior Checklist. In addition, 14 percent had high scores on the aggressive subscale and almost a quarter (22 percent) had high scores on the hyperactivity subscale, said Dr. Perrin. The rates of other coexisting psychiatric diagnoses included 2.5 percent for depression, 1.5 percent for bipolar disorder, 19 percent for ADHD, 5.4 percent for obsessive-compulsive disorder, and 7.5 percent for anxiety. However, Dr. Perrin noted that many children with ASD are treated for these psychiatric disorders without a formal diagnosis.
Gastrointestinal Disorders in Patients with Autism
Timothy Buie, M.D., Associate, Department of Pediatrics, Massachusetts General Hospital for Children
Dr. Timothy Buie gave an overview of GI symptoms and conditions that are often seen in association with ASD. He noted that the prevalence of GI complaints among children with ASD ranged from 17 percent to more than 70 percent.7, 8, 9, 10 With the most recent studies from the Autism Treatment network (ATN) suggesting the prevalence of GI issues in autism is likely over 50%. Dr. Buie discussed some of the literature on food allergies/sensitivities and inflammatory bowel disorders in children with autism. In a 2002 study, half of parents reported food allergy or sensitivity in children with autism.11 He said that as a result of these allergies/sensitivities, many parents try restricted diets (gluten free, casein free) for their children in the hope of improving symptoms. However, the literature has not shown that dietary interventions work globally for children with autism. Dr. Buie said that observational dietary studies often show improvement in symptoms but these usually do not stand up to more rigorous investigation. For example, in a double-blind crossover design study,12 neither gluten-free nor casein-free diets produced any benefit in a 12-week period. Dr. Buie stated that the findings of no benefit in some studies may reflect the patient selection and that a subgroup of children with autism may benefit from dietary modifications. There also might be other issues that account for why some children do well on certain food-restricted diets.
Dr. Buie said that in 2008, a group of experts convened a consensus conference on GI symptoms in ASD, which resulted in two consensus papers published in Pediatrics.13, 14 Dr. Buie highlighted a few key statements from these consensus reports. Patients with ASD with GI symptoms deserve to be evaluated in the same manner as individuals without ASD;15 GI conditions that are reported to be common in individuals without ASD are also encountered in individuals with ASD; the prevalence of GI abnormalities in those with ASD is incompletely understood; the existence of a GI disturbance specific to individuals with ASD (e.g. "autistic enterocolitis") has not been established; individuals with ASD and GI symptoms are at risk for problem behaviors, as a result the diagnostic evaluation can be complex; and education of caregivers and healthcare providers is necessary in order to be able to recognize typical and atypical symptoms of GI disorders in those with ASD. Dr. Buie mentioned new research topics, including the possible role of bacterial flora disruptions; MET transcription disruption;16 impaired CHO digestion, transport, and dysbiosis;17 and abnormal microbiome assessments.18 He concluded by reinforcing that although children with autism have problem behaviors, underlying medical factors such as pain from gastrointestinal issues should be strongly considered as a potential basis for those behaviors.
Catatonia in Autism Spectrum Disorders
Lee Wachtel, M.D., Medical Director, Neurobehavioral Unit, Kennedy Krieger Institute
Dr. Lee Wachtel discussed the history, presentation, diagnosis, and treatment of catatonia in patients with ASD. She said that catatonia is estimated to occur in 12-18 percent of autistic patients, based on the literature.19, 20, 21 She noted that common catatonia symptoms include immobility/rigidity, stupor, mutism, posturing, echophenomena, grimacing, physical excitement, combativeness, stereotypy, negativism (e.g. food refusal), and autonomic instability. Dr. Wachtel highlighted the symptoms of physical excitement and combativeness, as these are often overlooked in patients with catatonia. In addition, negativism in the form of food refusal is commonly interpreted as a GI complaint but is also common in catatonia. Although less common, autonomic instability—thermoregulatory and cardiovascular instability – can be lethal, she said. Of note, catatonia secondary to a general medical condition is a new condition in the DSM-5; catatonia also was added as a specifier for major mood disorders. Catatonia can have serious impact on individuals with ASD, said Dr. Wachtel. They may be unable to move, may develop dehydration and/or malnutrition, and may be unable to void. In addition, they may develop severe tissue damage as a result of repetitive self-injurious behavior. Dr. Wachtel described the Wing-Shah catatonia criteria: increased slowness in movement and vocalization, difficulty initiating and completing tasks, increased dependence on prompts, passivity/amotivation, and prominent functional deterioration.22 Self-injurious behavior with no operant function is a particularly troubling symptom of catatonia, she said. Treatment of catatonia associated with ASD consists primarily of benzodiazepine use in increasing dosages as necessary. Lorazepam is most commonly used. Dr. Wachtel said that high dosages – on the order of 12 mg-18 mg per day – are common in this population. Antipsychotics also are commonly prescribed for behavior problems in individuals with autism. However, these should be avoided in catatonia, as this drug class can worsen the condition. Lastly, electroconvulsive therapy (ECT) can be effective for patients, who do not respond to benzodiazepines, she said.
Immune and Metabolic Conditions in Patients with Autism Population
Richard Frye, M.D., Ph.D., Director, Autism Research, Arkansas Children's Hospital Research Institute, and Associate Professor, Pediatrics, University of Arkansas for Medical Sciences College of Medicine
Dr. Richard Frye highlighted some of the major findings on immune and metabolic conditions in patients with ASD. Researchers recently estimated that 21-29 percent of children with autism have genetic abnormalities identifiable based on currently known autism gene mutations and available genetic tests, while for the other 71 percent, the causes are currently not known.23 While a variety of different inherited metabolic disorders have been identified in the autism population, the majority of these have only been reported in isolated cases. He noted that there are a number of metabolic and immune conditions that are common in autism but do not appear to be heritable. Nevertheless, there may still be a complex genetic component (i.e., spontaneous, non-inherited gene mutations or epigenetic changes), which likely involves environmental triggers. Dr. Frye said that several of these metabolic abnormalities are found in certain genetic disorders that are associated with autism, even though the disrupted genes do not directly affect the metabolic pathways. This suggests that certain metabolic abnormalities may be the final common pathways that cause disease in some children with autism. In a recent meta-analysis conducted by Dr. Frye,24 he estimated the overall prevalence of mitochondrial disease in autism to be 5 percent, but the percentage of children with ASD that demonstrate biomarkers of mitochondrial dysfunction may potentially be much higher. Dr. Frye noted that the three studies included in this analysis relied on the identification of genetic abnormalities to define mitochondrial disease. Therefore, the true prevalence may be underestimated. He said that several studies have suggested that many children with autism have abnormalities in reduction-oxidation (redox), methylation, and folate pathways. In addition, a number of studies have shown various abnormalities in the immune system in children with autism. Dr. Frye noted that some children with ASD may have an autoantibody to the folate receptor alpha which carries folate into the brain. Dr. Frye said that many researchers believe that understanding abnormalities in immune, mitochondrial, and redox systems is crucial to understanding the pathophysiology involved in autism. These three systems are interconnected, such that dysfunction in one system can cause dysfunction in another; these systems are amenable to treatment.
Committee and Panel Discussion
Dr. Dawson asked if these conditions could be a stable part of the phenotype, as opposed to conditions that emerge in adolescence or adulthood. Dr. Frye said that one of the problems that researchers encounter is that these conditions are often identified after an autism diagnosis. Therefore, it's unclear if these conditions are part of the pathophysiology that causes autism. He said that this is a key question because a better understanding of the pathophysiology could lead to biomarkers that could allow clinicians to make a diagnosis before autism develops and perhaps prevent it. Ms. Redwood asked what was needed to develop screening tools and clinician guidelines on medical comorbidities associated with autism. She proposed the creation of an IACC Task Force or Subcommittee to address this issue. Dr. Insel asked Dr. Perrin how the IACC could work with the AAP to educate clinicians and parents about medical conditions associated with ASD. Dr. Perrin noted that the AAP task force on autism would be a natural means of interaction for the IACC. He said that there was considerable interest within the AAP to better understand autism, to improve care, and to improve training. Dr. Insel deferred Ms. Redwood's proposal for discussion later during the IACC business portion of the meeting.
Meeting Report: Environmental Epigenetics Symposium
March 22-23, 2013, University of California (UC) at Davis, MIND Institute, Sacramento, CA; Sponsored by Autism Speaks, Escher Fund for Autism, and UC Davis MIND Institute
Alycia Halladay, Ph.D., Senior Director, Environmental and Clinical Sciences, Autism Speaks
Jill Escher, Escher Fund for Autism
Dr. Alycia Halladay said that the purpose of the Environmental Epigenetics Symposium was to identify the current state of research on autism and epigenetics, to identify research gaps, and to identify tools and measures for future research. The meeting featured talks on possible mechanisms in autism, the role of the germline, neurodevelopment, exposures, and ethical considerations. In particular, there was consensus that research on genes and environment needs to involve studies with multiple time points, different tissues (surrogate markers), and diversity of exposures. Dr. Halladay said that there may be two types of epigenetics: one that is context dependent (exposure dependent) and one that is germline dependent, making it important to study exposures that can affect reproductive health, such as endocrine disruptors. A video library of symposium presentations is available.
Ms. Escher provided an overview of germline disruption. In particular, pharmaceutical and other novel exposures of the recent past may have impaired germline development in a subset of people, contributing to changes in the incidence of neurodevelopmental abnormalities, including ASD. Ms. Escher also gave a quick overview of epigenetic research that the Escher Fund for Autism has helped to fund. She noted that a summary (PDF – 241 KB) of the major themes of the conference was included in the materials for this IACC meeting.
Rethinking Nonverbal Autism
Portia Iversen, Parent and Advocate
Ms. Iversen described her experience with her son,25 who has nonverbal autism, and her work as an autism advocate. She showed the Committee two videos on her son's experience. The first video chronicled his early life. Ms. Iversen described several techniques that they tried to help her son learn to communicate. Ms. Iversen described the Rapid Prompting Method (RPM), developed by Ms. Soma Mukhopadhyay26 for her son Tito. Ms. Iverson said that there is no standardized terminology for nonverbal autism, and there is no distinction between nonverbal phenotypes – functionally nonverbal (low-communicating), physically nonverbal (speech praxis), and cognitively nonverbal (mental retardation). In addition, it's unclear what percentage of the ASD population is nonverbal. Ms. Iversen suggested that the nonverbal subgroup of individuals with ASD may be very heterogeneous. She concluded by highlighting research needs: noninvasive assessment of cognition; adaptive testing methods for cognitive and educational measurement/characterization; literacy-based and other communication training methods; research on genetic, metabolic, and comorbid disorders; and general medical care for nonverbal individuals with autism.
Oral Public Comments
Ms. Eileen Nicole Simon suggested that injury of auditory centers in the brain, due to cord clamping immediately after birth, may play a role in the development of autism. She said that the midbrain auditory center is most vulnerable to injury from oxygen insufficiency at birth. She asked the IACC to discuss the importance of the auditory system for language development and the potential effects of early cord clamping on the auditory system.
Ms. Jill Rubolino, who has a son with autism – read 10 statements regarding undiagnosed and untreated medical conditions in individuals with autism. She said that symptoms of these conditions may inaccurately be interpreted as behavioral problems related to autism. These individuals may suffer unnecessary pain as a result. She said that there are a number of medical conditions that have been associated with autism. Individuals with autism deserve the same access to medical care as those without autism. Ms. Rubolino requested the development of a medically-based standard of care for autism.
Mr. Albert Enayati showed a video of his 20-year-old son, who has autism. His son is self-injurious and is a danger to others, he said. Mr. Enayati requested that the IACC include the possible role of vaccines in its research portfolio and that vaccinations in the United States be regulated. He said that multiple vaccines are injected in a single day without regard to side effects. Booster vaccines are given without testing to confirm if T and B lymphocytes have become protective. Mr. Enayati asked the members of the IACC why this issue has not been addressed.
Ms. Jeanna Read said after seeking help for her son's medical conditions at several academic medical facilities, her family was able to put together a team of specialists to treat her son's medical conditions. Team specialists included a neurologist, gastroenterologist, mitochondrial specialist, geneticist, immunologist, pediatrician, nutritionist, family medicine physician and therapists. She said that her son was diagnosed with immune deficiency, mitochondrial disease, bowel disease, seizures, central nervous system "inflammatory" disorder, metabolic abnormalities, and encephalopathy. She stressed the need for medical care for comorbid conditions.
Mr. Nicholas Gammicchia said that as a person with ASD, it had been difficult for him to convey his pain related to medical conditions. His mother, Ms. Carolyn Gammicchia, spoke about the victimization of individuals with ASD: sexual assault, kidnapping, wandering, and abuse in schools (restraint and seclusion). She said that police reports could easily identify victims of crimes with a disability through the use of a simple check box. Ms. Gammicchia also said that the Law Enforcement Awareness Network – created by the Gammicchia family – provides curricula for law enforcement and first responders on the needs of individuals with disabilities.
Ms. Anne Bauer said that one area of needed research was the use of acetaminophen by pregnant women and their offspring. Several lines of biologic and epidemiologic evidence suggest a plausible causal relationship between its use and the development of autism in a susceptible population, she said. In particular, males are differentially exposed and differentially susceptible to acetaminophen toxicity. Acetaminophen is commonly used during circumcision. She said that several studies suggest a lower capacity to metabolize drugs in the early days of life. Ms. Bauer asked the Committee to investigate early life and prenatal analgesic exposure a top priority.
Ms. Brooke Potthast shared three factors that she believed led to her son's regression. First, she noted that she received intravenous antibiotics in labor and delivery, as a precaution against Group B Streptococcus. She said that those antibiotics killed her beneficial gut flora and did not allow her son to establish his own. Second, she said that her son received a Hepatitis B vaccination that contained ethyl mercury. She cited a 2008 study that suggested an increased risk of developmental disability in boys who were vaccinated with the full Series of hepatitis B vaccine. Third, she said that her son's urinary porphyrin tests and urinary toxic metal tests showed aluminum, lead, mercury, cadmium, tungsten, et cetera. She suggested reviews of the medical records of affected children to identify patterns.
Mr. Clinton Potocki read the comments of his sister, Ms. Dawn Loughborough, regarding lessons learned from the death of Alex Spourdalakis, who was killed by his mother and godmother. These lessons include the need for: basic medical care for children with ASD; a standard of medical care; pain assessment of these individuals; better management of medications; investigation into the inappropriate use of restraints; and improved insurance coverage.
Ms. Wendy Fournier spoke on behalf of the National Autism Association of the need to improve basic medical care for individuals with autism, who often have several comorbid conditions that can result in behavior problems. She said that it is troubling that the mainstream medical community is not aware of these issues. Training and dissemination of information about medical comorbidities associated with autism is needed, she added.
Public Comments Discussion
Dr. Sally Burton-Hoyle said that in her experience in training teachers, many of the behaviors mentioned with regard to medical comorbidities are not acknowledged or recognized in the school setting. She said that it was important to start encouraging different systems to work together to recognize these behavioral problems as clues to medical conditions. She added that there should be more emphasis in involving schools to support individuals with autism. Ms. Redwood asked if there was a way for the Committee to respond formally to some of the comments. She said that it was important to listen to families and to convey that the IACC recognized issues from public comments and worked to address them. Dr. Insel asked the members to consider how to best balance the IACC's effort to meet its statutory requirements – updating the Strategic Plan and monitoring progress – with other means of meaningfully considering public input.
Panel on Wandering
Wandering and Autism: What We Know, What We Need
Wendy Fournier, President and Founding Board Member, National Autism Association
Ms. Fournier provided an update of activities since October 2010. These included the creation of an ICD-9-CM medical diagnosis code, V40.31 (wandering in diseases classified elsewhere), and the drafting of a letter from the IACC to Secretary Sebelius with several recommendations regarding wandering. Ms. Fournier said that the National Autism Association (NAA) 27 (PDF – 168 KB) keeps track of media reports on serious wandering cases. Accidental drowning accounted for almost all (91 percent) lethal wandering cases between 2009 and 2011. Of note, lethal outcomes were twice as likely for girls. Ms. Fournier said that there are a number of available resources, including: NAA's Big Red Safety Box and toolkits for caregivers and first responders from Autism Wandering Awareness Alerts Response and Education (AWAARE ). However, wandering prevention needs include: affordable home safety items, insurance coverage, more resources, and medical research, she said.
IACC Activities to Address Wandering
Alison Singer, President, Autism Science Foundation, and Member, IACC
Ms. Singer described the IACC's activities related to wandering. In October 2010, the IACC formed a Safety Subcommittee to investigate the issue of wandering. The IACC sent an advisory letter (PDF – 84 KB) to HHS Secretary Sebelius, which included five action points. These were: data collection, a medical code for wandering, an alert system for ASD wandering (similar to the Amber Alert), programs to prevent wandering, and best practice models for parental notification of wandering/fleeing incidents in schools. The Committee also worked to facilitate a study of wandering, funded by several autism organizations. The survey was released in early 2011 through the Interactive Autism Network (IAN). More than 1,200 parents responded. Also in 2012, an ICD-9 code (V40.31) was created for wandering. The results of the IAN study were published in Pediatrics28 in 2012. The study release generated considerable media coverage, she said. In late 2012, the AAP released the second edition of its Autism Toolkit for Clinicians ,29 which includes information on wandering.
The Amber Alert Program
Robert Lowery, Jr., Executive Director, Missing Children Division, National Center for Missing and Exploited Children (NCMEC)
Mr. Lowery provided an overview of U.S. Department of Justice (DoJ) efforts regarding missing children with special needs. He said that in recent years, the greatest number of missing child cases appear to involve children with ASD. In addition, these cases were associated with an increased mortality rate. Mr. Lowery noted that missing children with special needs pose unique challenges for law enforcement and first responders. These children may seek small enclosed spaces, may elude/hide from searchers, may be unable to respond to search teams, and often seek bodies of water. By working with national autism groups and search experts, NCMEC has developed search strategies for missing children with special needs, which require an elevated response – additional manpower and resources. Mr. Lowery stressed that the actions of first responders are vital to safe recovery. He briefly reviewed resources, best practices guides/search protocols, safety devices, first responder awareness, and training. He said that NCMEC partners with 'A Child is Missing' alerts, which is an automated reverse 911 system that notifies residents/businesses in a targeted area about a missing child. Mr. Lowery also discussed the Amber Alert system – which is limited to abducted children – and described guidelines. He noted that Amber Alerts are managed at the state and regional level and are most effective when vehicle information is known.
Jeff Slowikowski, Associate Administrator, Office of Juvenile Justice and Delinquency Prevention, U.S. Department of Justice
Mr. Slowikowski said that the DoJ works closely with NCMEC and provides training on missing children search efforts to law enforcement personnel at all levels of government. DoJ also sponsors Amber Alert training. Part of this training includes what to do when missing children do not meet the criteria for an Amber Alert. Mr. Slowikowski emphasized that the Amber Alert system is a voluntary program that is administered at the state and local levels. While DoJ and NCMEC provide recommended criteria for Amber Alerts, each jurisdiction may create its own set of criteria. He pointed out that the Prosecutorial Remedies and Other Tools to end the Exploitation of Children Today (PROTECT) Act – which includes Amber Alerts – specifies child abduction as a key criteria for an Amber Alert.
Committee and Panel Discussion
Ms. Singer asked whether it would be possible to institute an autism alert program that would trigger law enforcement and first responders to use an autism-specific search protocol. She also asked if the next step for autism advocates would be to lobby Congress for legislation to set up an autism alert system. Mr. Slowikowski said that existing alerts (Amber and Silver ) have had powerful lobbying organizations that have been able to secure targeted funding. The Committee discussed water safety tools. Ms. Abdull commented that states have home- and community-based waivers through CMS that could be used for home safety modifications for individuals with disabilities (including those with autism). These include home alarms and safety tracking devices. Ms. Redwood asked what could be done in the present to get an autism alert system in place for children who wander. Mr. Slowikowski said that it would take more time to create an autism-specific alert program. However, he noted that there are existing systems in place to search for children who do not meet the Amber Alert criteria. Mr. Lowery said that public awareness of and education about the special needs of children with autism is a large need that the IACC could help address. Dr. Guttmacher suggested the possibility of creating a subgroup of the IACC to address autism alert programs. Dr. Daniels suggested using the existing Subcommittee structure to accommodate work on safety issues. Dr. Dawson suggested and moved, that they devote special attention to safety issues at an upcoming meeting of the Services, Policy, and Research Subcommittee. All IACC members interested in this topic, including those not serving on the SRP subcommittee, would be welcome to attend to help with efforts on this issue. The Committee voted to do so.
Tips for Early Care and Education Providers
Shantel Meek, M.S., Policy Advisor for Early Childhood Development, Administration for Children and Families
Ms. Meek shared tips for early care and education providers (PDF – 297 KB), developed by the Administration for Children and Families (ACF). ACF and NICHD queried a group of researchers for one tip for working with children. Based on the responses, ACF developed a list of 12 tips: engage children in play; use children's interests in activities; promote child participation with a shared agenda; use visual cues to make choices; play together with objects to practice joint attention; learn words during joint attention; book sharing; uncovering potential; peer-mediated support through teaching children to play with each other; predictable spaces; predictable routines; and distracting and redirecting children to engage in appropriate behavior. Ms. Meek described each tip in detail and provided examples.
Susan Daniels, Ph.D., Executive Secretary, IACC, and Acting Director, Office of Autism Research Coordination, NIMH
Dr. Daniels quickly reviewed some of the most recent autism research. This information is available in the Science Update (PDF – 360 KB) slides posted on the IACC website. She noted that this information includes links to the PubMed entries. Dr. Guttmacher briefly discussed President Obama's BRAIN initiative, launched on April 2, 2013. This is a multi-agency federal initiative involving private partners to understand the human brain. More than $100 million dollars of federal funding are slated for FY 2014.
DSM-5 Planning Group Update
Geraldine Dawson, Ph.D., Professor, Psychiatry and Behavioral Sciences, Duke University, and Chair, IACC DSM-5 Planning Group
Dr. Dawson noted the addition of four new members to the Planning Group: Laura Carpenter, Ph.D., (Medical University of South Carolina); Diane Paul, Ph.D., (American Speech-Language-Hearing Association); Susan Swedo, M.D., (Chair, DMS-5 Neurodevelopmental Disorders Work Group); and Amy Wetherby, Ph.D., (Florida State University). The Working Group is addressing questions and concerns regarding the impact of the new DSM-5 criteria on research and the impact on practice, policy, and training. Dr. Dawson said that the group plans to draft a set of research goals that can also be used as objectives for the Strategic Plan. They also plan to draft an IACC policy statement with recommendations for practice, policy, and training. In addition, OARC has added a DSM-5 resources webpage.
OARC and IACC Business Update
Susan Daniels, Ph.D., Executive Secretary, IACC, and Acting Director, Office of Autism Research Coordination, NIMH
Dr. Daniels said that the IACC had received a response (PDF – 46 KB) from Secretary Sebelius to the IACC letter on health coverage. Secretary Sebelius thanked the Committee for their recommendations. Dr. Daniels reviewed the proposed planning process for the update to the Strategic Plan. The Committee will assess the progress made over the past 5 years, including funded projects, programs, and funding; biomedical and services research progress; remaining gaps and new opportunities; outcomes/impacts; and barriers to progress, along with potential solutions. Dr. Daniels said that the Committee had discussed the creation of seven Strategic Plan Update Planning Groups – one for each of the Strategic Plan questions. These groups would be composed of IACC members, external experts, and community stakeholders. The composition of these groups will be based on membership of the 2012 Planning Groups. Members will be added or substituted as needed/desired. The Committee planned to start assembling the groups in July 2013. Dr. Daniels said that Planning Groups will be able to review data from the Portfolio Analyses for 2008-2012. This information includes cumulative funding, objective progress, funder totals, and funding distribution across Strategic Plans by year and by questions in each year. She added that OARC staff is working on the data for 2011-2012. Other available data sources include: the Summary of Advances, previous Strategic Plan Updates, Publications Analysis and the Combating Autism Act Report to Congress (anticipated in September 2013). Dr. Daniels said that the Question 1 Planning Group will meet by phone to review data for Question 1 and to recommend changes or additions to data formats before distributing data to all Planning Groups. The proposed process is to schedule 2-3 phone meetings per Strategic Plan Update Planning Group in September and October 2013. In October, Planning Groups will begin synthesizing information and drafting updates. Subcommittees will review drafts in November. The full Committee will review and approve final Strategic Plan, with the goal of finalizing the Update December 31, 2013.
Dr. Dougherty suggested including an update of IACC activities in the Strategic Plan update. Dr. Daniels said that the Combating Autism Act Report to Congress is due this fall, and does include a section on the IACC. Ms. Singer expressed concern that under the proposed timeline the full Committee would not be able to review each of the sections of the draft Strategic Plan Update until December, which would be too late to make substantial changes. She suggested using the scheduled full Committee meeting on October 29th to instead hold a workshop to review sections of the Strategic Plan Update. Planning Group invited experts would take part of this meeting.
Dr. Daniels quickly reviewed the planned projects of the Services Research and Policy Subcommittee. These possibly include a letter to Secretary Sebelius regarding adult services, an adult services project to review of existing adult ASD toolkits to assess gaps, a yet undefined health disparities project, and a meeting with a spotlight on safety, including wandering/elopement. She said that she and Dr. Mandell would discuss possible dates for a Subcommittee meeting in late August 2013.
Ms. Redwood reminded the Committee that they had discussed the possibility of adding a Subcommittee on medical comorbidities. However, she said that she understood from prior committee discussion that there was not adequate OARC staff to accommodate another subcommittee within the IACC. She asked if it would be possible to create a Planning Group on medical comorbidities, which would allow for consultation with external experts. She proposed that the Committee vote to create a Planning Group to consider issues related to co-occurring conditions within the BTR Subcommittee. Several committee members had left the meeting by this time, however there was still a quorum, and those that remained approved this motion unanimously.
Several committee members left, but remaining Committee members discussed the general structure of IACC meeting, including how to accommodate all of the speakers/panels and discussion that the Committee would like to accomplish during a meeting. Suggestions included 2-day meetings, reducing the number of presentations, and better time management of meeting sessions. Members informally agreed that stricter management of the length of time for speakers and discussions was necessary, even if it means abruptly cutting off presentations to stay on schedule. It was suggested that IACC/OARC business should be discussed early in the day. Dr. Daniels noted that this is not always possible as speakers often request to present early in the day. Another suggestion was to hold presentations as webinars and to reserve Committee meetings for discussion of those presentations and Committee business.
Dr. Batra raised the question of how the Committee could respond to oral and written public comments. Several members expressed a desire to be more responsive to individuals sharing concerns with the Committee. Dr. Daniels reminded Committee members that the IACC has a responsibility to listen to and thoughtfully consider public input as they formulate documents, advice and recommendations, but that federal advisory committees are not generally expected to respond individually to public comments. She noted that if the committee were to draft individual responses to public comments, they would be subject to the same approval processes as other IACC documents, needing discussion and approval by the entire IACC.
Dr. Daniels said that she would be in contact with regard to future meetings. Dr. Guttmacher thanked everyone for their participation.
The meeting was adjourned at 4:51 p.m.
These minutes of the IACC Full Committee were approved by the Committee on February 3, 2014.
I hereby certify that this meeting summary is accurate and complete.
Thomas Insel /s/
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee
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