IACC Full Committee Meeting - July 8, 2014

Topic	Topic Description
Date:	Tuesday, July 8, 2014
Time:	9:00 a.m. to 5:15 p.m. Eastern
Place:	The Neuroscience Center 6001 Executive Boulevard, Conference Rooms C and D Rockville, Maryland 20852 Map and Directions
Webcast:	http://videocast.nih.gov
Cost:	The meeting is free and open to the public.
Agenda:	To discuss committee business, updates and issues related to ASD research and services activities.
Access:	White Flint Metro Station (Red Line)
Registration:	On-site registration is from 8:30 a.m. to 9:00 a.m. Pre-registration is recommended to expedite check-in. Seating in the meeting room is limited to room capacity and on a first come, first served basis. Online pre-registration will close at 5:00 p.m. Eastern the day before the meeting. After that time, you will need to register onsite the day of the meeting.
Conference Call Access:	Dial: (888) 946-7606 Access code: 9653752
Materials:	Meeting materials
Deadlines:	Notification of intent to present oral comments: Monday, June 30, 2014 by 5:00 p.m. Eastern Submission of written/electronic statement for oral comments: Tuesday, July 1, 2014 by 5:00 p.m. Eastern Submission of written comments: Tuesday, July 1, 2014 by 5:00 p.m. Eastern Please note: The NIMH Office of Autism Research Coordination (OARC) anticipates that written public comments received by 5:00 p.m. Eastern, Tuesday, July 1, 2014 will be presented to the Committee prior to the July 8th meeting for the Committee's consideration. Any written comments received after the 5:00 p.m. Eastern, July 1, 2014 deadline through July 7, 2014 will be provided to the Committee either before or after the meeting, depending on the volume of comments received and the time required to process them in accordance with privacy regulations and other applicable Federal policies. Please read the IACC Public Comment guidelines.
Contact Person:	Ms. Lina Perez Office of Autism Research Coordination National Institute of Mental Health, NIH 6001 Executive Boulevard, NSC, Room 6182A Rockville, Maryland 20852 Phone: (301) 443-6040 E-mail: IACCPublicInquiries@mail.nih.gov
Public Comment:	Any member of the public interested in presenting oral comments to the Committee must notify the Contact Person listed on this notice by 5:00 p.m. Eastern on Monday, June 30, 2014, with their request to present oral comments at the meeting. Interested individuals and representatives of organizations must submit a written/electronic copy of the oral presentation/statement including a brief description of the organization represented by 5:00 p.m. Eastern on Tuesday, July 1, 2014. Statements submitted will become a part of the public record. Only one representative of an organization will be allowed to present oral comments and presentations will be limited to three to five minutes per speaker, depending on the number of speakers to be accommodated within the allotted time. Speakers will be assigned a time to speak in the order of the date and time when their request to speak is received, along with the required submission of the written/electronic statement by the specified deadline. In addition, any interested person may submit written comments to the IACC prior to the meeting by sending the comments to the Contact Person listed on this notice by 5:00 p.m. Eastern on Tuesday, July 1, 2014. The comments should include the name, address, telephone number and when applicable, the business or professional affiliation of the interested person. NIMH anticipates written public comments received by 5:00 p.m. Eastern, Tuesday, July 1, 2014 will be presented to the Committee prior to the meeting for the Committee's consideration. Any written comments received after the 5:00 p.m. EST, July 1, 2014 deadline through July 7, 2014 will be provided to the Committee either before or after the meeting, depending on the volume of comments received and the time required to process them in accordance with privacy regulations and other applicable Federal policies. All written public comments and oral public comment statements received by the deadlines for both oral and written public comments will be provided to the IACC for their consideration and will become part of the public record. Core Values: In the 2009 IACC Strategic Plan, the IACC listed the "Spirit of Collaboration" as one of its core values, stating that, "We will treat others with respect, listen to diverse views with open minds, discuss submitted public comments, and foster discussions where participants can comfortably offer opposing opinions." In keeping with this core value, the IACC and the NIMH Office of Autism Research Coordination (OARC) ask that members of the public who provide public comments or participate in meetings of the IACC also seek to treat others with respect and consideration in their communications and actions, even when discussing issues of genuine concern or disagreement.
Please Note:	Remote Access: The meeting will be open to the public through a conference call phone number and webcast live on the Internet. Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. If you experience any technical problems with the webcast or conference call, please send an e-mail to HelpDeskIACC@gmail.com or by phone at 415-652-8023. Special Accommodations: Individuals who participate in person or by using these electronic services and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the Contact Person listed on this notice at least 5 days prior to the meeting. Security: In the interest of security, visitors will be asked to show one form of identification (for example, a government-issued photo ID, driver's license, or passport) and to state the purpose of their visit upon entrance to the Neuroscience Center. Also as a part of security procedures, attendees should be prepared to present a photo ID at the meeting registration desk during the check-in process. Pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. Meeting schedule subject to change.

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On-site registration is from 8:30 a.m. to 9:00 a.m. Eastern for members of the public attending in person, and the meeting will also be available to the public by live webcast and conference call. The materials for the meeting can be found here.

Time	Event
9:00 a.m.	Welcome, Introductions, Roll Call and Approval of Minutes Thomas Insel, M.D. Director, National Institute of Mental Health (NIMH) Chair, IACC Susan Daniels, Ph.D. Director, Office of Autism Research Coordination (OARC), NIMH Executive Secretary, IACC
9:15 a.m.	OARC/IACC Update Susan Daniels, Ph.D. Director, Office of Autism Research Coordination (OARC), NIMH Executive Secretary, IACC Thomas Insel, M.D. Director, NIMH Chair, IACC
9:30 a.m.	Science Update Thomas Insel, M.D. Director, NIMH Chair, IACC
9:45 a.m.	Neuroimaging the Full Spectrum of Autism David G. Amaral, Ph.D. Distinguished Professor, Department of Psychiatry and Neuroscience Chair, Beneto Foundation Director of Research, UC Davis MIND Institute University of California, Davis Director, Autism BrainNet
10:15 a.m.	Autism BrainNet David G. Amaral, Ph.D. Distinguished Professor, Department of Psychiatry and Neuroscience Chair, Beneto Foundation Director of Research, UC Davis MIND Institute University of California, Davis Director, Autism BrainNet Alison Singer, M.B.A. President Autism Science Foundation Member, IACC
10:45 a.m.	Break
11:00 a.m.	NIH NeuroBioBank Michelle P. Freund, Ph.D. Chief Neurotechnology and Molecular Biotechnology Programs Office of Technology Development and Coordination National Institute of Mental Health (NIMH)
11:20 a.m.	Briefing on State of the States Sonya Bowen, M.S.W. Health Insurance Specialist Disabled and Elderly Health Programs Group Division of Long-Term Services and Supports Center for Medicaid and CHIP Services Centers for Medicare & Medicaid Services
11:50 a.m.	Lunch
1:00 p.m.	Public Comment
1:30 p.m.	Discussion of Public Comment
1:45 p.m.	Update on the South Carolina Children's Educational Surveillance Study (SUCCESS) Laura Carpenter, Ph.D., BCBA Associate Professor of Pediatrics Division of Developmental and Behavioral Pediatrics Department of Pediatrics Medical University of South Carolina
2:15 p.m.	Break
2:30 p.m.	Panel on Early Developmental Trajectories in Autism Spectrum Disorder (ASD) 2:30 p.m. Audrey Thurm, Ph.D. Staff Scientist Pediatrics and Developmental Neuroscience Branch National Institute of Mental Health (NIMH) 2:50 p.m. Rebecca Landa, Ph.D., CCC-SLP Founding Director, Center for Autism and Related Disorders, Kennedy Krieger Institute Professor, Department of Psychiatry and Behavioral Sciences, School of Medicine Johns Hopkins University 3:10 p.m. Catherine Lord, Ph.D. Director Center for Autism and the Developing Brain DeWitt Wallace Senior Scholar Professor of Psychology in Psychiatry and Pediatrics Weill Cornell Medical College/NewYork-Presbyterian Hospital 3:30 p.m. - Discussion
4:00 p.m.	Round Robin 4:00 - An Insider's Perspective on Autism Noah Britton, M.A. Self-Advocate Member, IACC 4:15 p.m. - Teen Transition Sally Burton-Hoyle, Ed.D. Associate Professor Eastern Michigan University Department of Special Education College of Education Member, IACC 4:30 p.m. - Nevada's Autism Treatment Assistance Program (ATAP) Jan Crandy Case Manager Nevada's State Autism Treatment Assistance Program Member, IACC 4:45 p.m. - Medicaid Coverage for ASD Services Melissa Harris Director Division of Benefits and Coverage Disabled and Elderly Health Program Group Centers for Medicare and Medicaid Services 5:00 p.m. - Home and Community Based Services (HCBS) Waiver Programs John O'Brien, M.A. Senior Policy Advisor Disabled and Elderly Health Programs Group Centers for Medicare and Medicaid Services U.S. Department of Health and Services Member, IACC
5:15 p.m.	Adjournment

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The Interagency Autism Coordinating Committee (IACC, also referred to as "the Committee") convened a meeting on Tuesday, April 8, 2014 from 9:00 a.m. to 5:27 p.m. at the National Institutes of Health's (NIH) Neuroscience Center in Rockville, 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.

Participants:

Thomas Insel, M.D., Chair, IACC, National Institute of Mental Health (NIMH); Susan Daniels, Ph.D., Executive Secretary, IACC, Office of Autism Research Coordination (OARC), (NIMH); Idil Abdull, Somali American Autism Foundation; James Ball,^* Ed.D., BCBA-D, JB Autism Consulting; James Battey, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD); Anshu Batra, M.D., Our Special Kids; Coleen Boyle, Ph.D., M.S. Hyg., Centers for Disease Control and Prevention (CDC); Noah Britton, M.A., Bunker Hill Community College; Sally Burton-Hoyle, Ed.D., Eastern Michigan University; Matthew Carey, Ph.D., Left Brain Right Brain; Wendy Chung, M.D., Ph.D., Simons Foundation Autism Research Initiative (SFARI); Judith Cooper, Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD); Jose Cordero, M.D., M.P.H., University of Puerto Rico; Jan Crandy, Nevada State Autism Treatment Assistance Program; Geraldine Dawson, Ph.D., Duke University;Tiffany Farchione,^* M.D., U.S. Food and Drug Administration (FDA); Alice Kau, Ph.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (representing Alan Guttmacher, M.D.); 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) (representing Linda Birnbaum, Ph.D.); David Mandell, Sc.D., University of Pennsylvania; Stan Niu, Ph.D., U.S. Department of Defense (DoD); 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., Centers for Disease Control and Prevention (CDC); Robert Ring, Ph.D., Autism Speaks; John Robison, College of William and Mary; Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF); Larry Wexler, Ed.D., U.S. Department of Education (ED) (representing Michael Yudin)

*Note: Attended by phone

Roll Call and Opening Remarks

The Interagency Autism Coordinating Committee (IACC) convened on July 8, 2014. Dr. Thomas Insel called the meeting to order at 9:00 a.m. Next, Committee members introduced themselves. Dr. Insel welcomed new Committee members Dr. Robert Ring of Autism Speaks and Dr. Wendy Chung of the Simons Foundation. Dr. Ring and Dr. Chung, appointed by HHS Secretary Kathleen Sebelius before she left office, fill vacancies on the IACC left by the change in affiliation of Dr. Geraldine Dawson, formerly of Autism Speaks, and the departure of Dr. Dennis Choi, formerly of the Simons Foundation. Both new members provided brief summaries of their backgrounds.



OARC/IACC Update

Dr. Susan Daniels, Director, Office of Autism Research Coordination, Executive Secretary, IACC

Dr. Daniels began by updating the Committee about the status of the reauthorization of the Combating Autism Reauthorization Act (CARA) of 2011, which is set to expire on September 30, 2014. The IACC will sunset on that date unless reauthorized by Congress. At the time of this meeting, the Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 (or the Autism CARES Act of 2014) had been approved by the U.S. House of Representatives and was awaiting a Senate vote. This bill would reauthorize CARA. If passed, the next steps for the IACC would depend on the provisions of this bill. However, as the terms of the current IACC members expire on September 30, 2014 and the new law, if passed, would likely have different membership requirements for the committee, new committee member appointments would be needed. In order to form a new committee meeting the new requirements, the IACC would need to issue an open call for nominations. The committee briefly discussed issues related to continuation of the committee's work if the Autism CARES bill were to pass, and then Dr. Insel noted if a new committee needed to be formed, it would be helpful if any public members who did not wish to be re-nominated could let him/OARC know.

Dr. Daniels also discussed the World Health Assembly Resolution (May 24, 2014) (PDF – 91 KB) calling for comprehensive and coordinated efforts for the management of autism spectrum disorders. The resolution was co-sponsored by more than 50 countries, and was supported by all 194 member states of the World Health Organization (WHO). Key elements include the identification of primary challenges and priorities for ASD policy in member states, including healthcare and service provision, and protection of human rights; a request to the WHO Director-General to engage with and support member states in strengthening their recognition and support for people on the autism spectrum; and establishment of ASD as a global health priority. Dr. Daniels described the member state priorities, including healthcare/services, research, and disparities. Dr. Geraldine Dawson provided a more detailed history of the resolution. Members of the Committee expressed support for and interest in participating with the resolution in some way. Dr. Daniels suggested inviting someone to speak about the resolution at a future IACC meeting.

Lastly, Dr. Daniels updated the Committee on the IACC workshop planned by the IACC Co-Occurring Conditions Planning Group, which is scheduled to be held Tuesday, September 23, 2014 at the Porter Neuroscience Center on the main NIH campus. The Group decided to focus on under-recognized co-occurring health conditions in children and adults with ASD, and to identify how the IACC could support research and community/provider awareness, and foster development of clinical practice guidelines in areas where needed.



Science Update

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

Dr. Insel gave a brief overview of scientific advances in autism research that had taken place since the IACC had last met in April. He reviewed select papers by IACC Strategic Plan questions.

Question 1: When Should I Be Concerned? Dr. Insel described one paper which showed that infant siblings of children with ASD (i.e. at high risk for ASD) who had deficits in fine motor/grasping skills around 6 months of age were more likely to develop ASD at 3 years.¹ Next he mentioned a study using computer vision tools to capture critical behavioral observations in infants and provide a low-cost non-invasive evaluation to help clinicians.² In another study involving infant siblings of children with ASD (infants at high-risk of ASD), researchers found that high-risk infants who later developed ASD had more difficulty with auditory processing at 24 months than low-risk children.³ The findings suggest that behavioral responses to sensory input could be an early risk marker of ASD in high-risk children.

Question 2: How Can I Understand What Is Happening? In one study, researchers found decreases in the efficiency of functional connectivity in high-risk infants classified with ASD at 24 months compared to low-risk infants and high-risk infants without ASD.⁴ The findings could lead to a biomarker, Dr. Insel said. In another study, researchers found that boys with autism were exposed to elevated levels of steroid hormones (e.g. testosterone, progesterone and cortisol) in amniotic fluid.⁵ Dr. Insel noted that the predictive meaning of this finding was unclear, but perhaps could help explain why autism is more common in males. Lastly, he described a population-based study from Los Angeles County, which found that a person's country of origin – not just race/ethnicity – may play a role in autism risk.⁶ The researchers found that children of foreign-born mothers had a greater risk of autism than children of white American mothers.

Question 3: What Caused This to Happen and Can It Be Prevented? Dr. Insel noted a large study of residential proximity to agricultural pesticides and neurodevelopmental disorders.⁷ In particular, he drew attention to the effect sizes – proximity to organophosphates at some time during gestation was associated with a 60 percent increased risk of ASD. In a study using a large Swedish cohort, researchers found the heritability of ASD to be about 50 percent⁸ – lower than previously suggested.

Question 4: Which Treatments and Interventions Will Help? Dr. Insel noted a study on corticosteroid therapy and regressive autism because of the way that the study was performed. The researchers built in biomarkers to look for very early changes (Frequency Modulated Auditory Evoked Response) as a surrogate for improvement later in treatment.⁹ This research was important for the development of treatment measures and ultimately better randomized controlled trials (RCT). Dr. Insel also discussed an RCT that showed greater improvement among children who received a caregiver-mediated intervention compared with those who received standard intervention.¹⁰ This could prove beneficial for those in remote locations.

Questions 5 (Where Can I Turn for Services?) and 6 (What Does the Future Hold, Particularly for Adults?): Dr. Insel highlighted a study co-authored by Dr. David Mandell, which addressed the costs of ASD in the United States and the United Kingdom.¹¹ They reported that the cost of supporting an individual with an ASD and intellectual disability for the lifespan was $2.4 million in the United States. That cost for an individual with an ASD without intellectual disability was $1.4 million in the United States. With regard to adults-focused ASD research, Dr. Insel pointed to a study which bolstered the business case for supported employment of adults with autism by demonstrating its cost effectiveness.¹² He also singled out a paper that addressed the difficulty of measuring depression in verbal adults with ASD,¹³ which could be a point of discussion at the upcoming co-occurring conditions workshop.

Question 7: What Other Infrastructure and Surveillance Needs Must Be Met? In one study of reproductive stoppage, researchers found that parents were up to 50 percent less likely to have additional children after having a child with autism.¹⁴ This finding has implications for risk recurrence studies and genetic counseling. Dr. Insel also highlighted a paper from the Autism Brain Imaging Data Exchange (ABIDE) study, which served as a proof of principle for the large-scale data-sharing and evaluation of brain architecture in ASD involving large amounts of imaging data (more than 1,100 fMRI autism data sets) from 16 sites.¹⁵



Neuroimaging the Full Spectrum of Autism

David G. Amaral, Ph.D., Distinguished Professor, Department of Psychiatry and Neuroscience; Chair, Beneto Foundation; Director of Research, UC Davis MIND Institute; University of California, Davis; and Director, Autism BrainNet

Dr. David Amaral discussed how neuroimaging of young children with ASD using MRI might enable researchers to identify different neurophenotypes – patterns of brain development. Dr. Amaral and his colleagues developed the Autism Phenome Project in 2006 to identify subtypes of autism in children 2 to 3.5 years at diagnosis, using longitudinal assessments. He noted that there were few exclusions. Dr. Amaral described the study details and protocol, some of which can be found on the study's website. At the time of the meeting 366 families had participated in the study. The average age of recruitment for children with ASD and matched control children was 3 years; recruitment of boys and girls matched general prevalence rates. Dr. Amaral noted that the children recruited early tended to be more severely affected. Dr. Amaral also described the challenges and the now-standard protocol for preparing these children for MRI scanning. They scanned children at night during natural sleep. Prior to the scan, parents worked with children at home to prepare them for the sensations and sounds of the MRI as the children fell asleep. The researchers also made the scanner room a child-friendly space and used a mock scanner. He noted that they had had very good success.

Dr. Amaral briefly reviewed some of their findings from the MRIs collected so far. They found that boys with autism had slightly greater cerebral volume compared with boys without autism.¹⁶ However, girls showed no difference. He noted that total brain size was very variable. In particular, they found that regressive onset autism was associated with larger brain size in boys. Head circumference for these boys began to differentiate early (4-6 months). The researchers believe that Disproportionate Megalencephaly (ASD-DM) is a clear neurophenotype, in which the ratio of brain volume to the child's height is 1.5 standard deviations greater than the mean – 15 percent of boys in this cohort. The researchers also found that there was no difference in cortical thickness, but children with ASD had much larger cortical surface area. The reason appeared to be that different regions of the brain were disproportionately larger, rather than the entire brain surface. Using a different type of imaging technique (diffusion tensor imaging tractography), they were able to determine that the development of brain pathways is different in boys compared with girls, even in typically-developing children.¹⁷ They found that some pathways in boys with ASD showed irregularities. However, boys with ASD with larger brains had those irregularities and additional pathways with connectivity irregularities. The researchers were trying to map the distribution of pathway irregularities to clinical symptoms to identify other neurophenotypes. They were also investigating these irregularities in different brain regions previously. For example, they had identified three neurophenotypes in the amygdala – abnormally fast growth in the amygdala (40 percent of boys with ASD), those with abnormally slow growth in the amygdala (20 percent of boys with ASD), and those with normal growth (40 percent of boys with ASD).

Dr. Amaral concluded by reviewing future questions and proposed studies. Do early neurophenotypes persist into middle childhood? Do early neurophenotypes predict different patterns of autism severity, cognitive function, and co-morbid symptoms? Is there a pattern of early brain organization that is associated with optimal outcomes? The answers would require longitudinal studies from infancy to adulthood across severity levels, he noted. He pointed out that the IACC had made such a study an objective in the 2009 Strategic Plan (Question 2). Dr. Amaral said that he and his colleagues had proposed such a study and conducted a pilot study with a range of severity levels and intellectual disabilities to develop awake-imaging protocols. They found that this was possible and could provide good quality images.



Autism BrainNet

David G. Amaral, Ph.D., Distinguished Professor, Department of Psychiatry and Neuroscience; Chair, Beneto Foundation; Director of Research, UC Davis MIND Institute; University of California, Davis; and Director, Autism BrainNet

Dr. David Amaral started by noting that the Autism BrainNet consortium was a joint project of the Simons Foundation Autism Research Initiative (SFARI), the Autism Science Foundation, and Autism Speaks. The project arose from research needs. Dr. Amaral said that MRI didn't provide enough resolution to understand entirely the neurobiology of autism, making brain tissue a necessary tool for research. Brain tissue allowed scientists to see neurons and networks. However, there were not enough post mortem brains from individuals ASD available to allow the amount of research that is possible with sophisticated new techniques. In particular, MRI findings indicated that a large number of clinically and genetically well-characterized brains would be needed for analysis, as well as appropriate control brains for comparison. Well-organized cohorts would be needed to optimize research replication and complementarity also. Experts concluded that a regional approach would optimize efforts to increase brain donation. Not only could local centers reach out to the community more effectively, the time between collection and preparation could be shortened, improving specimen quality. The initial regional centers or nodes included Harvard University/Beth Israel Deaconess Medical Center in Boston, the Icahn School of Medicine at Mount Sinai in New York City, the University of California, Davis MIND Institute in Sacramento, and the University of Texas Southwestern Medical School in Dallas. The first International site was established at Oxford University. One important aspect of the network was that no site or site director had preferential access to any of the brains. Applications for brain tissue would be handled through an entirely separate scientific review process. The network would also be using cohorts of research brains and control brains to ensure that all researchers would have access to the same samples – to improve replication and complementarity. He noted that the Autism Speaks' Autism Tissue Program (ATP) was being transitioned to the Autism BrainNet. Lastly, Dr. Amaral acknowledged that the subject of brain donation can be difficult for researchers to bring up to families. However, he said that a number of families have commented that the brain donation was the most positive aspect of the tragedy of losing a loved one. This was a message worth sharing with the community. In order to educate the community about the need for brain tissue, the "It Takes Brains outreach campaign was created.

Alison Singer, M.B.A., President, Autism Science Foundation, Member, IACC

Ms. Alison Singer echoed Dr. Amaral, saying that there were few brains available for critical autism research. The new BrainNet network would not be valuable without brains to distribute. In order to create an outreach campaign, they started by reviewing existing materials about brain donation for autism research. They found that these generally focused on the process of research, and often included pictures that were unsettling to families. In contrast, the similar activity of organ donation was generally was considered before a death, and was perceived by families as something positive that could come out of tragic situation, said Ms. Singer. With this in mind, they decided to focus their message on outcomes – the potential for research to improve the lives of real people with autism. They next developed four focus groups based on the age of the child (three groups) and one composed of adults with ASD. They determined from this work that the target group was families of those with children aged 11-17 years. This group was most likely to take action based on materials. Next, they conducted an online survey of parents or those with autism to understand their baseline level of awareness of autism brain donation. They found that only one third of respondents were aware that they could donate tissue. Almost a third were not aware that family members could donate brains. Even fewer were aware that they could preregister for ASD brain donation, as is done with organ donation. However, when asked, half said that they were willing to consider registering to donate their brain tissue; 38 percent said that they were willing to consider this for their child with ASD; and 31 percent said that they were willing to consider donating brain tissue for their child without ASD. Of those who said that they would be willing to donate tissue (55 percent), half said that they wanted to help other children and 38 percent said that they wanted to support research. Those who were undecided said that they were unaware (33 percent) or needed to think about it more/needed more information (27 percent).

The result of this research was the "It Takes Brains to Solve Autism" campaign. Ms. Singer said that the idea behind the campaign is that families raising children with autism were heroic already, but families who took the extra step to register to donate brain tissue were superheroes. The campaign featured the Matthews family, who shared their reasons for choosing to register. Importantly, Ms. Singer said that registration was not a commitment.

Questions and Comments from the Committee

Mr. Robison commented that it would be useful to have tissue samples from adults with optimal outcomes (across spectrum). Also the question regarding changes in diagnosis of ASD over time was an interesting one but would need samples across the spectrum and over time. Ms. Singer said that they had recognized this and that the messages were different for kids and adults. The next step was to develop an ad for adults with autism. Dr. Amaral noted that there were different questions for different populations. Young brains could provide information about etiology, while those from adults could provide information about adaptations and plasticity that lead to better outcomes. Ms. Redwood noted the need to reach out to medical examiners, even providing freezers when necessary. Also, they would need to carefully screen typical brains.



NIH NeuroBioBank

Michelle P. Freund, Ph.D., Chief, Neurotechnology and Molecular Biotechnology Programs, Office of Technology Development and Coordination, National Institute of Mental Health (NIMH)

Dr. Michelle Freund discussed the NIH NeuroBioBank (NBB) and how it could support autism research. The NBB brain and tissue repository is supported by the National Institute of Mental Health (NIMH), the National Institute of Neurological Disorders and Stroke, and the Eunice Kennedy Shriver National Institute of Child Health and Human Development. Five sites make up the NBB (via contracts), and share an integrated IT system: the University of Miami, Harvard University, Mt. Sinai, the University of California, Los Angeles (Sepulveda Research Corporation), and the University of Pittsburgh. The goal of the program is to increase the availability of brain tissue, standardize quality metrics, return data derived from banked tissues to public databases, and take advantage of tremendous opportunities for discovery (e.g. genetics, genomics). Dr. Freund said that each site has a steering committee. All of the sites are overseen by an ethics and science panel and a tissue access panel (primarily composed of NIH staff, but with site input). Both Panels report to the NIH NBB Team. The NBB researcher site is active, though not all of the data has been uploaded. Researchers can, however, make requests for tissue. Dr. Freund noted that each site was very close to collecting 100 brains per year. They could increase the number of brains collected if more money were available.



Briefing on State of the States

Sonya Bowen, M.S.W., Health Insurance Specialist, Disabled and Elderly Health Programs Group, Division of Long-Term Services and Supports, Center for Medicaid and CHIP Services, Centers for Medicare & Medicaid Services (CMS)

Ms. Sonya Bowen provided an overview of the Autism Spectrum Disorders (ASD): State of the States of Services and Supports for People with ASD (PDF – 2.3 MB) report published by the CMS. The aim of the document was to collect and publish information on existing state and federal programs and supports for individuals/families living with ASD in the United States, especially through state-specific summaries of available programs and supports. The report was intended to answer three key questions:

1. What are states and/or local government doing to provide services for people with ASD?
2. What are the types of services and supports that a person with ASD can access?
3. How were these supports and services funded?

Each state profile includes information on state bills and legislation, state insurance regulations, Medicaid Home and Community-Based Service (HCBS) programs, state services and supports, early intervention, school-aged children, and adults. State Profiles also included information on systems tracking; transitions/coordination of services (1) from early intervention to school and (2) from school to employment; training for direct service support workforce; corrections; and long-term plans to expand supports and services. During the report development, they identified several service/support gaps: ASD-specific services for adults, options for individuals on program waiting lists, provider availability and access, supports for seamless transitions, best practices, across the lifespan, and insurance mandate barriers.

Questions and Comments from the Committee

Ms. Abdull asked about the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) benefit. In particular, she asked for clarification about using the benefit for treatment. Mr. John O'Brien said that this report was a snapshot in time, and that most states were covering services through other programs at that time. Later in the day, they would discuss the increase in coverage. Ms. Abdull also expressed concerns about differences in coverage levels between managed care and Medicaid. Dr. Mandell asked about whether models of excellence had been identified from the states, and what did these services mean in the context of Medicaid expansion. Ms. Bowen noted that document was intended as a compendium, and was not intended for this kind of evaluation.



Public Comment

Ms. Wendy Fournier spoke on behalf of the National Autism Association about wandering. She stated that autism-related wandering had resulted in 27 fatalities in the past year and provided a list of items that her organization believed needed to be addressed in order to reduce the number of wandering incidents and wandering-related deaths among children with autism.

Eileen Nicole Simon, Ph.D., R.N. expressed her view that cord clamping/asphyxia immediately after birth led to language and hearing problems via injury of auditory centers in the brain.

Mr. James Williams addressed the problems adults with autism face in finding employment. He listed several barriers to success in the workplace for individuals with autism. He also posed a number of questions that would need to be addressed to help people with ASD find employment

Ms. Tara McMillan shared her concerns regarding the use of vaccines in infancy and the onset of autism. She recounted her son's experience with vaccinations as a child, noting that he became sick after each one.

[Name of minor withheld] shared her and her family's experience with her brother's autism and her belief that vaccines caused his autism.

Another person [name of minor withheld] shared her belief that her brother's autism was caused by vaccines.



Discussion of Public Comment

Mr. Robison commented that though there has been a significant investment in many studies of vaccines, studies have failed to find a link, so there is no evidence. The issue has not been ignored. He also noted that the issue of regression in autism was frequently raised, but that it was not a new phenomenon. It had been described as early as 100 years ago and had been discussed by the IACC, so it also was not being ignored. Nonverbal autism was an important issue for IACC. He added that answering the questions around autism were not at all simple or quick, and required patience.

Ms. Abdull said she that when you hear something so often it seems true. However, she personally knew of many families in her community who did not vaccinate younger children (younger siblings of children with autism), but they still developed autism. The question of vaccination and autism was not cut and dry. She suggested that the anger arose because there was no clear cause, and yet families and others wanted to blame something for their child's condition. She also said that wandering needed to be addressed, noting a bill in Congress called Avonte's Law (PDF – 422 KB). She said that her son was a bolter/wanderer. It was important to do whatever was necessary to get the devices to protect your child. If medically necessary, parents should get a prescription from their pediatrician and fight with Medicaid, insurance, and education services to get a tracking device. There was also a need to train police/fire personnel at the local and county levels. She added that employment was also a very important issue and suggested inviting speakers from the U.S. Department of Labor to a future IACC meeting.

Ms. Redwood thanked all of the members of the public who submitted written and oral comments for their advice to the committee. She commented that more work was needed than the IACC could accomplish, and that the Committee had not done its job to get answers. She also stated her belief that no environmental factors should be discounted as research targets, including cord clamping and Tylenol, and that not enough has been done to look into vaccines and identify a subset of children who might be more vulnerable. Dr. Batra suggested inviting a speaker from the American Congress of Obstetricians and Gynecologists to speak about cord clamping. She agreed that employment also was a very important issue. Ms. Crandy emphasized the importance of addressing the health of the family unit as a whole. Dr. Dawson said that the IACC had made progress in the area of wandering/elopement. They needed to identify similar issues, where there could be tangible results.

The Committee came back to the minutes from the April 8, 2014 meeting from earlier in the day and approved them with no changes.



Update on the South Carolina Children's Educational Surveillance Study (SUCCESS)

Laura Carpenter, Ph.D., BCBA, Associate Professor of Pediatrics, Division of Developmental and Behavioral Pediatrics, Department of Pediatrics, Medical University of South Carolina

Dr. Laura Carpenter said that the knowing prevalence ASD is important in order to know if healthcare providers, education systems, service agencies, and others are adequately equipped to help those individuals. However, prevalence estimates were challenging, as it depended on the definition and measurement methods. For example, measurement methods that relied on prior diagnosis were problematic because underdiagnoses and late diagnosis were common. The South Carolina Children's Educational Surveillance Study (SUCCESS) study was a population-based screening and assessment study. The three primary goals of the SUCCESS study were to calculate the prevalence of ASD, compare the diagnostic criteria of the Diagnostic and statistical manual of mental disorders (DSM-IV-TR)¹⁸ to DSM-5,¹⁹ and to compare with findings using CDC methodology (Autism and Developmental Disabilities Monitoring (ADDM) Network). The study includes screening, evaluations, and clinician review. Results of the study, which included 8,500 children born in 2004, are expected in the summer of 2015.

Dr. Carpenter provided a few characteristics of the study area and some interim results. The study area included three counties in South Carolina. Roughly a third of participants were black, 59 percent were white, and 7 percent were Hispanic. The researchers used the Social Communication Questionnaire (completed by parents) for screening, which was distributed through partner schools, homeschool associations, and community events. Dr. Carpenter noted that the screening process was very labor intensive. As of this meeting, 106 of 134 schools were completed. The survey response rate was 51 percent, but there was a difference by race. The response rate for whites was 46 percent compared with 32 percent for non-whites. However, racial and ethnic information was missing for more than 4,000 children. Based on the Social Communication Questionnaire (SCQ) responses for the first 3,031 children, almost 8 percent of children were at risk for autism, and should have additional evaluation. The researchers suspect that there are illiteracy/language problems with the SCQ that might be skewing results for Hispanic children and children at Title I schools. In particular, they have seen many false positives among Hispanic children. Phase 2 of the study involves clinical evaluation of children suspected to be at risk for ASD (SCQ score of 15 or greater) and those with an elevated SCQ score (9-14). This evaluation is a 3-hour battery of measurement tools for children and questionnaires for parents performed by doctoral-level clinical psychologists.

Dr. Carpenter outlined a number of take-home messages regarding community-based research, including the use of professional materials and strong follow-through, pilot materials and incentives, a community-based advisory board, individuals with good social skills, consideration of barriers specific to a given community, and visibility in the community. She added that the strength of this methodology was the ability to confirm the diagnosis using gold-standard assessment tools, and highly-trained clinicians. Unlike most other methodologies, a prior diagnosis wasn't necessary. The amount and type of information obtained from cases could include biological information to phenotypic information. However, the methodology was limited by who chooses to enroll, making study marketing key. In particular, participation could be affected by attitudes to ASD. Lastly, Dr. Carpenter said that she found it easier to apply DSM-5 criteria to school-aged children than to toddlers. Yet, early identification is crucial.

Questions and Comments from the Committee

Dr. Cordero asked about the sensitivity of the screening tool and whether comparisons could be made to typically-developing students. Dr. Carpenter said that these comparisons could be made based on information provided by schools. She agreed that the SCQ needed to be improved, but was the best available tool. Ms. Abdull noted that word-for-word translations weren't always culturally appropriate. She asked if Dr. Carpenter had noticed this phenomenon. Were different questions needed for different ethnicities? Dr. Carpenter said that they should be able to get at this idea from the data. She said that there was likely a problem with an overly literal interpretation of screening questions in these cases. Dr. Insel asked if a similar study could be done for adults. Dr. Carpenter said that one problem is that the definition of autism changed over time. Dr. Boyle added that there were no widespread institutional centers that could be tapped into for adults, as schools were for kids. The Committee briefly discussed how screening/prevalence could be assessed in adults.



Panel on Autism Trajectories

Audrey Thurm, Ph.D., Staff Scientist, Pediatrics and Developmental Neuroscience Branch, National Institute of Mental Health (NIMH)

Dr. Audrey Thurm began by providing a history of the definition of the term regression, going back as early as 1943 with Dr. Leo Kanner's paper,²⁰ describing the loss of skills at onset. However, regression also has been used to describe significant declines in skills associated with childhood disintegrative disorder (former nomenclature), mitochondrial disorder, specific epilepsy syndromes, and other neurological disorders (especially Rett syndrome). Later studies have used variable definitions and had variable behavioral outcomes. Studies using categorical definitions estimated regression as occurring in 25 percent of cases. Later studies – including prospective studies involving infant siblings – have suggested early delays and worsening of some skills. This raised questions about what pre-loss development looks like, the frequency of normal development prior to loss of skills (as opposed to delayed development prior to loss of skills), and whether loss in all skill categories occurs simultaneously. Researchers began to define, understand and categorize regression differently: early onset without loss, delay plus loss, plateau, regression without early symptoms (based on retrospective parent report).^{21, 22}

Recently, Dr. Thurm and colleagues used long interviews (Regression Validation Interview) to evaluate whether children with autism, with developmental delay, and with typical development had ever developed key skills, and if so when.²³ They found that 63 percent of children with autism had lost at least one skill. The loss of several social skills occurred in more than half of the children with autism. Different skills were lost at different ages. In additional, there was an overall decline in skills. Dr. Thurm said that they found no clear cut point for determining whether a child could be considered to have "regressive" autism. Also, the number of skills lost was independent of the number of skills gained. There also appeared to be an overlap in the loss of skills and the onset of repetitive behaviors. She said that this posed the question of how to assess loss of skills when early delays occur at the same time – but the two dimensions were somewhat independent of each other. One important limitation of retrospective studies though, was parental recall and consistency over time. This highlighted the value of prospective studies. She cited one recent study presented at the 2014 International Meeting for Autism Research (IMFAR), which showed that 89 percent of the children with autism had a declining trajectory in the first 3 years, based on prospective examiner report. In comparison, 71 percent had a declining trajectory based on prospective parent report. She concluded by saying that an algorithm was needed to capture and measure onset patterns dimensionally to correlate with other neurobiologic continuous measures. Also there was a need for larger studies with in-depth phenotyping to determine if and how onset pattern affects later course of symptoms and comorbid/biologic presentation.

Rebecca Landa, Ph.D., CCC-SLP, Founding Director, Center for Autism and Related Disorders, Kennedy Krieger Institute, Professor, Department of Psychiatry and Behavioral Sciences, School of Medicine, Johns Hopkins University

Dr. Rebecca Landa described her work using prospective studies of infant siblings of children with autism (i.e. those at high-risk) to understand developmental trajectories. She began with a description of methodology, and then presented data from assessments of children at high- and low-risk. Children were characterized at 3 years as having ASD, an intermediate phenotype, or as unaffected. Dr. Landa said that they found several surprises with regard to trajectories. They had expected overt social atypicalities by 6 months of age, but this was not always the case. They also had expected to see early ASD in infancy with stability in presentation or typical development with regression in some cases. Instead, they found a prodromal period through 6 months of age, when infants appear to have normal behavior. They identified a group of children with ASD with early manifestation of symptoms (detectable by 14 months), and another group with later manifestation (detectable after 14 months).²⁴ Language regression could occur in either group, and at variable ages within groups.²⁵

Dr. Landa expanded on the term "regression," which means more than just language loss. It includes: loss of words; decreased frequency of communicative words; decreased frequency of social interaction; decreased frequency of social initiation; deterioration in quality of social interaction; decreased social responsivity (eye contact, social smile, etc.); decreased diversity of behavior; and reduced quality or complexity of play. How does the appearance of atypical features fit? The term regression has connotations that may or may not be helpful in trying to understand neurobiological mechanisms, she said. Another surprise they found was that motor delays at 6 months of age, particularly related to grasping and posture, correlated with later language delays.^{26, 27} She noted that standardized tests could not be relied upon at 6 months, and that more qualitative assessment of motor function was necessary. Dr. Landa also briefly discussed a paper from 2013, in which they attempted to capture the developmental trajectories of children with and without ASD in the first 3 years.²⁸ They found that while children at high-risk tested within the normal range on standardized test in the first 2 years, development decelerated and researchers detected subtle differences from typical development (e.g., reduced language comprehension, sparse inventory of speech sounds used communicatively, forms of social engagement, diminished in frequency), and autism symptoms emerged. This raised the question whether there was developmental coherence within early- versus later-manifesting ASD versus normally developing children. Also, were there latent classes? Do behavioral "outcome" classifications really provide information about developmental trajectory across developmental domains? In another study, the researchers identified four classes of children with ASD: accelerated development, normative development, early language delay/later fine motor delay, and slowing development.²⁹ More than half of children identified early with ASD were classified in the slowing class, while children later identified with ASD were more evenly spread across normative, early language delay/later fine motor delay, and slowing development classes – 36, 32, and 28 percent respectively. Importantly, trajectory is alterable with early intervention for most children with ASD. Dr. Landa concluded by saying that in autism connectivity becomes disrupted over time, and the disruption appears to be time sensitive.

Catherine Lord, Ph.D., Director, Center for Autism and the Developing Brain, DeWitt Wallace Senior Scholar, Professor of Psychology in Psychiatry and Pediatrics, Weill Cornell Medical College/New York-Presbyterian Hospital

Dr. Catherine Lord began by noting that ASD diagnosis is dependent on a clinician's detection of the presence of both positive (abnormal) and negative (the absence of normal) behaviors. However, these had to be evaluated in light of developmental level and context, because these could both have significant effects on diagnostic judgments. She then focused on describing a 2012 study,³⁰ in which they found four trajectory groups similar to those seen by Dr. Landa. The study was based on diagnoses at 3 years of age. Based on scores from the Autism Diagnostic Observation Schedule (ADOS), they identified: Class 1 severe persistent (21 percent), Class 2 worsening (21 percent), Class 3 improving (19 percent), and Class 4 non-spectrum (40 percent). They found no difference between the classes for gender or ethnicity. Siblings tended to be less affected. Also there was a lot of change between 30-36 months. They also noted that clinicians were no better at evaluating the children than parents (as compared with ADOS scores).

Interestingly, they found that all of the children – those with ASD, developmental disabilities, or typical development – improved in joint attention and gestures over time. However, children with autism had worsening eye contact and overall quality of social interaction. Trajectories were less clear for other skills. She noted that total ADOS scores could reflect improvements in some skills that offset losses of others. Dr. Lord said that the Autism Diagnostic Interview (ADI) criteria question for regression set the bar too high (especially language loss). However, parent-reported regression defined this way was found to be one of the most distinctive characteristics of children with ASD versus other language disorders or intellectual disability. Research had suggested that regressions in language remembered by parents were also more reliable across time and parents. The ages reported were affected by a number of factors, which affected other behaviors that families were asked to remember as well. These included telescoping, rounding and tagging to significant events. With telescoping, the more time that had passed after an event, parents remembered the event as occurring later. Parents also had a tendency to round up ages. Also, how caregivers remembered symptoms in the past changed over time, generally worsening. Dr. Lord said that it was very important to be aware of these issues, when looking at regression. She said that in her clinical experience, which an IACC member noted included seeing thousands of patients over a multi-decade career, she had seen only about eight examples of very dramatic, precipitous regressions in skills over a short period of time among children with autism, but that they do occur. She described those cases as "very, very rare compared to the more common phenomenon" affecting children with autism, in which a more complex and gradual mix of gain and loss of behavioral, social and language skills occurred over a longer period of time.

Questions and Comments from the Committee

Mr. John Robison asked Dr. Lord to comment on how to reconcile the fact that in her practice, she has seen dramatic regressions so rarely, and yet that so many parents who provide testimony at the IACC say that their child experienced a dramatic regression. Dr. Lord was not able to speculate about the specific experiences of families she had not worked with personally through her practice, but reiterated that these cases of severe regression do exist, but are not the norm when looking across the full range of patients with autism spectrum disorders that is seen in clinical practice and reported in the literature. Mr. Robison also asked how many skills come back or improve, and to what degree? Dr. Lord said that many skills did not come back, and were lost. However, she noted that skills had to be acquired in order to lose them. Dr. Koroshetz noted the considerable variability in clinician examination at specific time points. He wondered whether more continuous measures, like video over time, were possible. Dr. Lord agreed that clinician judgment was not very good, especially when signs were subtle. Clinicians produced good results with the standardized ADOS, though. Video required context to be useful. Ms. Redwood commented that variability in symptoms is likely related to variability in timing of environmental exposures and agreed that there was a need to identify biomarkers to help us to better understand the role of exposures on, for example, mitochondria and metabolism of children who did regress. Ms. Singer asked whether early intervention helped children identified before 14 months of age (who tended to have more severe symptoms). Dr. Landa said that those children identified before 14 months were similar to those identified after 14 months when compared at 36 months. Not all of the children receiving an early diagnosis underwent early intervention.



Round Robin

An Insider's Perspective on Autism: Noah Britton, M.A., Self-Advocate, Member, IACC

Mr. Noah Britton briefly shared some of the challenges or differences experienced by those with Autism/Asperger's syndrome. In particular, he described hypersensitivity and the idea that what may appear to be symptoms to others were really responses related to hypersensitivity. Likewise, when senses were overwhelmed, this could appear as unreceptivity but was actually a delay in processing of information. He noted that rapid transition from one activity to another could be difficult and uncomfortable or anxiety-provoking for people with ASD. Those with ASD need time to prepare for the day, in order to be ready for the situations they will experience throughout the day. He added that they required predictable structure, concrete explanations, and advance warnings of changes. Mr. Britton said that treatments that merely try to dampen or "shut down" symptoms were ineffective because they failed to take into account the reasons for the symptoms. He suggested an addendum to the Strategic Plan, noting that many treatments could be effective if staff understand the importance of the reasons for symptoms. Treatments required an inside-out approach.

Teen Transition: Sally Burton-Hoyle, Ed.D., Associate Professor, Eastern Michigan University, Department of Special Education, College of Education, Member, IACC

Dr. Sally Burton-Hoyle briefly presented on the College Supports Program (PDF – 372 KB) for students with ASD at Eastern Michigan University. She noted that there had been strong demand for the program. Program students had to be admitted to the University just like any other student. This program is person-centered to support students. Key Components include: an ASD-friendly environment, support for individual student deficits, and support for relationship development. She described the process of ensuring an ASD-friendly campus. Supports include: relationships with faculty, support groups, mentoring, recreation groups, liaisons with families, career planning, internship opportunities, and coordination with student's medical providers (when appropriate). Dr. Burton-Hoyle also detailed some of the academic and residential supports, and evidence-based practices.

Nevada's Autism Treatment Assistance Program (ATAP): Jan Crandy, Case Manager, Nevada's State Autism Treatment Assistance Program, Member, IACC

Ms. Jan Crandy shared Nevada's approach to improving the outcomes of children on the autism spectrum via the ATAP program. This program started in 2007 as a pilot and in 2013 became a permanent program. Its purpose is to eliminate or decrease the level of life-long supports for children on the spectrum with the priority of improving child outcomes and supporting changes that make a significant difference to the family. Under this program there are a number of plans created to assist parents and caregivers with the cost of providing treatment to children with ASD. She described the ATAP service plans that support evidence-based treatment via three different plan types that caregivers can choose from: Comprehensive, Targeted behavior plans with subtypes, and Insurance Assistance/Collaboration. These plans are designed to support transition through plan types from greater to less assistance as children advance in the program. To evaluate the progress of the children enrolled, outcome measures and performance indicators were established to demonstrate the effects of treatment on behavioral outcomes. Ms. Crandy noted that each year, the program assesses the plan type for the child as he or she continues in the program in order to transition to a less comprehensive plan, if possible. In the future, this program would like to secure more funding to expand and increase the number of children enrolled (by FY 15 ATAP will be able to service 572 children), and to fully evaluate and analyze program outcomes and long-term child outcomes.

Medicaid Coverage for ASD Services: Melissa Harris, Director, Division of Benefits and Coverage, Disabled and Elderly Health Program Group, Centers for Medicare and Medicaid Services

CMS released an Informational Bulletin on July 7, 2014 titled: Clarification of Medicaid Coverage of Services to Children with Autism (PDF – 143 KB). According to Ms. Melissa Harris, this bulletin describes the role of the Medicaid program in providing services to children with autism and was precipitated by a number of court cases over the years in which judges were deciding that ABA and other treatments are a part of a State's Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program responsibilities. CMS found that there are individual benefit categories in section 1905a of the Social Security Act that are suitable for these types of services as there is no limiting language that says services have to be for skill previously attained and then lost ("rehabilitative," vs. "habilitative"). Ms. Harris clarified that CMS did not specify the specific treatments, such as ABA, that must be covered but simply that this group needs to have their service needs met under the States EPSDT obligation, leaving room for additional treatments in future. States will now have to implement these services that to date, have not been required. Ms. Harris noted that this will likely be a challenge for many states but would like guidance from the IACC and the community about states that are doing a good job with the implementation of such services under Medicaid. The floor was then opened up to the committee for feedback and questions.

Ms. Abdull commented that she was very pleased to hear about this bulletin, as she felt that though research and outreach efforts were supporting earlier diagnosis and intervention strategies, that lack of coverage of needed interventions was a gap that would now be closed by this policy change.

Ms. Harris responded that work will be required to implement this policy, and the hope is that it really will provide the needed support to help families who are looking to have their service needs met. States may need help determining what specific benefits to cover (ABA and others) and will want to focus on evidence based practices.

Mr. Britton commented that this is a step in the right direction but expressed some concern regarding overuse of ABA. He asked if CMS had anything in place to stop ABA from being overgeneralized to all children on the autism spectrum and inquired about what is needed to recommend other interventions.

Ms. Harris replied that CMS is hesitant to endorse specific interventions rather than coverage of interventions according to need. In the case of ABA, CMS doesn't take a firm position either way. States are the ones that are going to need to be aware of the universe of services not just ABA. She relayed that CMS understands that not every child with the same diagnosis is going to need the same services. She noted that CMS is not a clinical expert and what makes sense for one child may not necessarily make sense for another child.

Home and Community Based Services (HCBS) Waiver Programs: John O'Brien, M.A., Senior Policy Advisor, Disabled and Elderly Health Programs Group, Center for Medicare and Medicaid Services (CMS), U.S. Department of Health and Services, Member, IACC

Mr. John O'Brien announced that in mid-January CMS released regulations on oversight of home and community based services programs (HCBS) (PDF – 406 KB) and how States design their HCBS programs. He explained that the three main points of the regulations include: (1) language allowing States to collapse HCBS programs, which helps in terms of managing programs and consistency of care, (2) a clear explanation about person-centered care and person-centered plans, and (3) a definition of the qualities/characteristics of HCBS, both for where people live and for what people do during the day which ensure that individuals are integrated into the community. He explained that in order for States to be able to meet the requirements that are in the regulations, they must administer an environmental assessment of all the services that are in their HCBS plans to identify which ones fit nicely under the HCBS program, others that do not meet the requirements and would be considered an institution, as well as the characteristics of programs that fit into the 5-yr transition period that need to transition to institution or to HCBS. CMS is now getting the first State transition plans and putting them out for public comment.



Closing Remarks

As this was the last full committee meeting of this current IACC, Dr. Insel thanked the members for their service over the past 2 years. He noted that in terms of research the funding level continues to increase and that there are a number of new solicitations out for autism research.

Dr. Insel thanked Dr. Daniels and the OARC staff for the support given to the IACC. The members of the Committee thanked Dr. Insel for his work in leading the committee.



Adjournment

The meeting was adjourned at 5:27 p.m.



Certification

These minutes of the Interagency Autism Coordinating Committee (IACC) were approved by the Committee on September 19, 2014.

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

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



References

¹ Libertus K, Sheperd KA, Ross SW, et al. Limited Fine Motor and Grasping Skills in 6-Month-Old Infants at High Risk for Autism. Child Dev. 2014 Jun 30. Epub ahead of print. [PMID: 24978128]

² Hashemi J, Tepper M, Vallin Spina T, et al. Computer Vision Tools for Low-Cost and Noninvasive Measurement of Autism-Related Behaviors in Infants. Autism Research and Treatment. 2014. [PMID: 25045536]

³ Germani T, Zwaigenbaum L, Bryson S, et al. Brief Report: Assessment of Early Sensory Processing in Infants at High-Risk of Autism Spectrum Disorder. J Autism Dev Disord. 2014 Jun 27. Epub ahead of print. [PMID: 24970108]

⁴ Lewis JD, Evans AC, Pruett JR, et al. Network inefficiencies in autism spectrum disorder at 24 months. Transl Psychiatry. 2014 May 6;4:e388. [PMID: 24802306]

⁵ Baron-Cohen S, Auyeung B, Norgaard-Pedersen B, et al. Elevated fetal steroidogenic activity in autism. Mol Psychiatry. 2014 Jun 3. Epub ahead of print. [PMID: 24888361]

⁶ Becerra TA, von Ehrenstein OS, Heck JE, et al. Rodriguez M, Ritz B. Autism spectrum disorders and race, ethnicity, and nativity: a population-based study. Pediatrics. 2014 Jul;134:e63-71. [PMID: 24958588]

⁷ Shelton JF, Geraghty EM, Tancredi DJ, et al. Neurodevelopmental Disorders and Prenatal Residential Proximity to Agricultural Pesticides: The CHARGE Study. Environ Health Perspect. 2014 Jun 23. Epub ahead of print. [PMID: 24954055]

⁸ Sandin S, Lichtenstein P, Kuja-Halkola R, et al. The familial risk of autism. JAMA. 2014 May 7;311:1770-7. [PMID: 24794370]

⁹ Duffy FH, Shankardass A, McAnulty GB, et al. Corticosteroid therapy in regressive autism: a retrospective study of effects on the Frequency Modulated Auditory Evoked Response (FMAER), language, and behavior. BMC Neurol. 2014 May 15;14:70. [PMID: 24885033]

¹⁰ Kasari C, Lawton K, Shih W, et al. Caregiver-Mediated Intervention for Low-Resourced Preschoolers With Autism: An RCT. Pediatrics. 2014 Jul;134:e72-9. [PMID: 24958585]

¹¹ Buescher AV, Cidav Z, Knapp M, et al. Costs of Autism Spectrum Disorders in the United Kingdom and the United States. JAMA Pediatr. 2014 Jun 9. Epub ahead of print. [PMID: 24911948]

¹² Mavranezouli I, Megnin-Viggars O, Cheema N, et al. The cost-effectiveness of supported employment for adults with autism in the United Kingdom. Autism. 2014 Apr 29. Epub ahead of print. [PMID: 24126866]

¹³ Gotham K, Unruh K, Lord C. Depression and its measurement in verbal adolescents and adults with autism spectrum disorder. Autism. 2014 Jun 10. Epub ahead of print. [PMID: 24916450]

¹⁴ Hoffmann TJ, Windham GC, Anderson M, et al. Evidence of Reproductive Stoppage in Families with Autism Spectrum Disorder: A Large, Population-Based Cohort Study. JAMA Psychiatry. 2014 Jun 18. Epub ahead of print. [PMID: 24942798]

¹⁵ Di Martino A, Yan CG, Li Q, et al. The autism brain imaging data exchange: towards a large-scale evaluation of the intrinsic brain architecture in autism. Mol Psychiatry. 2014 Jun;19:659-67. [PMID: 23774715]

¹⁶ Nordahl CW, Lange N, Li DD, et al. Brain enlargement is associated with regression in preschool-age boys with autism spectrum disorders. Proc Natl Acad Sci USA. 2011 Dec 13;108:20195-200. [PMID: 22123952]

¹⁷ Johnson RT, Yeatman JD, Wandell BA, et al. Diffusion properties of major white matter tracts in young, typically developing children. Neuroimage. 2013 Nov 21;88C:143-154. [PMID: 24269274]

¹⁸ American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: American Psychiatric Publishing.

¹⁹ American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.

²⁰ Kanner L. Autistic disturbances of affective contact. Nervous Child. 1943:2;217-250. [PMID: 4880460}

²¹ Ozonoff S, Heung K, Byrd R, et al. The onset of autism: patterns of symptom emergence in the first years of life. Autism Res. 2008 Dec;1(6):320-8. [PMID: 19360687]

²² Shumway S, Thurm A, Swedo SE, et al. Brief report: symptom onset patterns and functional outcomes in young children with autism spectrum disorders. J Autism Dev Disord. 2011 Dec;41(12):1727-32. [PMID: 21360021]

²³ Thurm A, Manwaring SS, Luckenbaugh DA, Lord C, Swedo SE. Patterns of skill attainment and loss in young children with autism. Dev Psychopathol. 2014 Feb;26(1):203-14. [PMID: 24274034]

²⁴ Landa RJ, Holman KC, Garrett-Mayer E. Social and communication development in toddlers with early and later diagnosis of autism spectrum disorders. Arch Gen Psychiatry. 2007 Jul;64:853-64. [PMID: 17606819]

²⁵ Landa RJ, Gross AL, Stuart EA, et al. Developmental trajectories in children with and without autism spectrum disorders: the first 3 years. Child Dev. 2013 Mar-Apr;84:429-42. [PMID: 23110514]

²⁶ Libertus K, Sheperd KA, Ross SW, et al. Limited Fine Motor and Grasping Skills in 6-Month-Old Infants at High Risk for Autism. Child Development. doi: 10.1111/cdev.12262

²⁷ Bhat AN, Galloway JC, Landa RJ. Relation between early motor delay and later communication delay in infants at risk for autism. Infant Behav Dev. 2012 Dec;35:838-46. [PMID: 22982285]

²⁸ Landa RJ, Gross AL, Stuart EA, et al. Developmental trajectories in children with and without autism spectrum disorders: the first 3 years. Child Dev. 2013 Mar-Apr;84:429-42. [PMID: 23110514]

²⁹ Landa RJ, Gross AL, Stuart EA, et al. Latent class analysis of early developmental trajectory in baby siblings of children with autism. J Child Psychol Psychiatry. 2012 Sep;53:986-96. [PMID: 22574686]

³⁰ Lord C, Luyster R, Guthrie W, et al. Patterns of developmental trajectories in toddlers with autism spectrum disorder. J Consult Clin Psychol. 2012 Jun;80(3):477-89. [PMID: 22506796]

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David G. Amaral, Ph.D.

Dr. Amaral joined the University of California, Davis in 1995 as a Professor in the Department of Psychiatry and Behavioral Sciences and the Center for Neuroscience and is Distinguished Professor of Psychiatry and Neuroscience. In 1998 He was named Chair of the Beneto Foundation and Founding Research Director of the UC Davis MIND (Medical Investigation of Neurodevelopmental Disorders) Institute. Dr. Amaral received a joint Ph.D. in psychology and neurobiology from the University of Rochester and carried out postdoctoral work at Washington University in neuroanatomy. He spent 13 years at the Salk Institute for Biological Studies before moving to UC Davis. Dr. Amaral pursues research dealing with the neurobiology of social behavior and with the development, neuroanatomical organization, and plasticity of the primate and human amygdala as well as hippocampal formation. His research has increasingly been dedicated to understanding the biological bases of autism spectrum disorder (ASD). This work includes post mortem studies of the autistic brain and magnetic resonance imaging studies of children with ASD. Dr. Amaral also has spearheaded efforts to establish nonhuman primate models of neuroimmune etiologies of ASD. As Research Director of the MIND Institute, he coordinates a comprehensive and multidisciplinary analysis of children with autism called the Autism Phenome Project to define biomedical characteristics of different types of autism. Most recently, Dr. Amaral has become Director of Autism BrainNet, a collaborative effort sponsored by the Simons Foundation, Autism Speaks, and the Autism Science Foundation to solicit post mortem brain tissue to facilitate autism research.

Sonya Bowen, M.S.W.

Ms. Bowen has 19 years of experience in Medicare and Medicaid policy and operations. She currently works at the Centers for Medicare & Medicaid Services (CMS) within the Center for Medicaid and CHIP Services. Ms. Bowen joined CMS in 1994 and has spent more than 2 years applying Medicaid policy to the development and oversight of State home- and community-based service programs for disabled and elderly individuals under Sections 1915 and 1115 of the Social Security Act. During the 13 preceding years, she provided management, oversight, and coordination in the administration of the national HEDIS® Medicare Health Outcomes Survey. Prior to 1998 Ms. Bowen provided consultation to members of Congress, local legislators, The White House liaison, the health care community, Medicare and Medicaid beneficiaries, and the general public on a broad array of issues concerning Medicare and Medicaid eligibility, coverage, and payment policies; medical and public assistance; private health insurance; and emerging health care issues. She holds a master's degree in social work from the University of Maryland, Baltimore and a bachelor's degree in sociology from Loyola College in Maryland. Ms. Bowen's current policy interests include behavioral health and long-term services and support.

Laura Carpenter, Ph.D., BCBA

Dr. Carpenter received a B.A. in psychology from the University of California, San Diego and a Ph.D. in clinical psychology from the State University of New York at Binghamton. She completed her internship and postdoctoral fellowship at the Medical University of South Carolina (MUSC), focusing on neuropsychology and on autism spectrum disorder (ASD). Dr. Carpenter is an Associate Professor of Pediatrics in the Department of Pediatrics, Division of Developmental and Behavioral Pediatrics, at MUSC. Her clinical interests include ASD, neuropsychological assessment, and applied behavior analysis. Dr. Carpenter's research focuses on issues related to the epidemiology of ASD.

Michelle P. Freund, Ph.D.

Dr. Freund is Chief of NIMH's Neurotechnology and Molecular Biotechnology Programs. She oversees research projects focused on the development of novel tools and technologies important for the advancement of basic and translational neuroscience. Dr. Freund is an active member of several trans-National Institutes of Health (NIH) interdisciplinary teams such as the NIH Blueprint for Neuroscience Research and the NIH Common Fund Programs. She also serves as Program Director for the NIH NeuroBioBank and as Chair of the Data Access Committee of the National Database for Autism Research. Dr. Freund received her Ph.D. in neuroscience from Hahnemann University and her B.A. from the University of California, San Diego. Before joining NIH in 2007, she studied the role of monoamine neurotransmitters in the actions of antidepressant drugs and the interactions of stress and drug addiction.

Rebecca Landa, Ph.D., CCC-SLP

Dr. Landa obtained her master's degree at the Pennsylvania State University (Penn State) and her doctorate at the University of Washington. She completed postdoctoral training in psychiatric genetics at Johns Hopkins University. Dr. Landa has received the NIMH Shannon Award for excellent and innovative research and the Rita Rudel Prize for Developmental Neuropsychology. She also received the 2009 Alumni Recognition Award from the College of Human Health and Development at Penn State. Dr. Landa is a speech-language pathologist and has practiced in public schools, university clinics, and hospital settings. Internationally, she has consulted with schools and families to establish state-of-the-science educational programming for children with autism spectrum disorder (ASD). Dr. Landa directs the Center for Autism and Related Disorders at the Kennedy Krieger Institute, which offers a uniquely interdisciplinary approach to serving children with ASD and their families. The Center combines educational, clinical, diagnostic, outpatient, and outreach programs to create treatments tailored to the particular needs of individual children and their families. Her research has focused on neuropsychological, learning, and communication processes in autism across the lifespan. Dr. Landa was principal investigator of an NIH STAART Center of Excellence through which she developed and defined the evidence-base for the early achievements intervention for toddlers with ASD. She has pioneered research aimed at identifying the earliest signs of autism through the study of infant siblings of children with autism. Dr. Landa is a member of the executive committee for Autism Speaks' Baby Siblings Research Consortium and is a member of the Toddler Treatment Network. She is also the principal investigator for an Autism Treatment Network site and co-principal investigator for a study funded by the Centers for Disease Control and Prevention (Study to Explore Early Development [SEED]) and the Autism and Developmental Disabilities Monitoring Network and a study by NIMH (Early Autism Risk Longitudinal Investigation [EARLI]). Dr. Landa has participated in multiple research collaborative studies that involve leading scientists in the United States and abroad. She is the author of the Pragmatic Rating Scale, which is used internationally in autism-related research and clinical practice. Dr. Landa's current research focuses on learning processes in autism and ASD early detection of and intervention.

Catherine Lord, Ph.D.

Dr. Lord is a licensed clinical psychologist with specialties in diagnosis, social and communication development, and intervention in autism spectrum disorder (ASD). She is renowned for her work in longitudinal studies of children with autism as well as for her role in developing autism diagnostic instruments currently used worldwide in both practice and in research. Dr. Lord also has been involved in the development of standardized diagnostic instruments for ASD with colleagues from the United Kingdom and the United States (the Autism Diagnostic Observation Schedule [ADOS] observational scale and the Autism Diagnostic Interview-Revised [ADI-R], a parent interview), now considered the gold standard for research diagnoses all over the world. She completed degrees in psychology at the University of California, Los Angeles and Harvard, and a clinical internship at TEACCH® Autism Program at The University of North Carolina at Chapel Hill. Dr. Lord's work at the Center for Autism and the Developing Brain involves continuing research in validity and longitudinal studies, early diagnosis of children with autism, regression in children with autism, and clinical evaluations and diagnoses of children and adults who may have autism.

Audrey Thurm, Ph.D.

As a staff scientist in the NIMH's Pediatrics and Developmental Neuroscience Branch, Dr. Thurm is a licensed child clinical psychologist who specializes in autism spectrum disorder and other neurodevelopmental disorders. She received training at DePaul University and Boston Children's Hospital/Harvard Medical School and completed a postdoctoral fellowship at the Johns Hopkins School of Medicine. Dr. Thurm has been at NIMH since 2002, serving in the extramural program until 2006, as Chief of both the Autism and Social Behavior Program and the Compulsive Repetitive Behaviors Program. In 2006 she moved to the intramural program to help launch the autism research program. Dr. Thurm has expertise in longitudinal studies and an interest in markers of the early diagnosis of autism.

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• Oral Public Comments (PDF – 183 KB)
• Written Public Comments (PDF – 366 KB)

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• Press Release: HHS Announces Appointment of New Public Members to the Interagency Autism Coordinating Committee
• Autism CARES Act draft legislation – S. 2449 (PDF – 319 KB)
• World Health Organization (WHO) Press Release – Autism Resolution
• World Health Assembly (WHA) Autism Report 2014 (PDF – 188 KB)
• WHA Autism Resolution 2014 (PDF – 256 KB)
• Autism BrainNet Website
• NIH Neurobiobank Website
• Centers for Medicare & Medicaid Services (CMS) State of the States Report (PDF – 2 MB)
• Articles on Developmental Trajectories and Regression
• Clarification of Medicaid Coverage of Services (CMCS) to Children with Autism Informational Bulletin – July 7, 2014 (PDF – 159 KB)
• Jan Crandy round robin presentation (PDF – 519 KB)

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• Meeting Transcript (PDF – 718 KB)

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• IACC Meeting Full Slide Set (PDF - 60 MB)

Presentation	Presenter(s)
OARC/IACC Update (PDF – 564 KB)	Susan Daniels, Ph.D., Director, Office of Autism Research Coordination (OARC), National Institute of Mental Health (NIMH), Executive Secretary, IACC Thomas Insel, M.D., Director, NIMH, Chair, IACC
Science Update (PDF – 270 KB)	Thomas Insel, M.D., Director, NIMH, Chair, IACC
Neuroimaging the Full Spectrum of Autism (PDF – 3.8 MB)	David G. Amaral, Ph.D., Distinguished Professor, Department of Psychiatry and Neuroscience Chair, Beneto Foundation Director of Research, UC Davis MIND Institute University of California, Davis Director, Autism BrainNet
Autism BrainNet (PDF – 2.3 MB)	David G. Amaral, Ph.D., Distinguished Professor, Department of Psychiatry and Neuroscience Chair, Beneto Foundation Director of Research, UC Davis MIND Institute University of California, Davis Director, Autism BrainNet Alison Singer, M.B.A., President, Autism Science Foundation, Member, IACC
NIH NeuroBioBank (PDF – 519 KB)	Michelle P. Freund, Ph.D., Chief Neurotechnology and Molecular Biotechnology Programs Office of Technology Development and Coordination, NIMH
Briefing on State of the States (PDF – 235 KB)	Sonya Bowen, M.S.W., Health Insurance Specialist, Disabled and Elderly Health Programs Group, Division of Long-Term Services and Supports, Center for Medicaid and CHIP Services, Centers for Medicare & Medicaid Services
Autism & Safety (PDF – 1.8 MB)	Wendy Fournier (Public Comment)
Update on the South Carolina Children's Educational Surveillance Study (SUCCESS) (PDF – 1.7 MB)	Laura Carpenter, Ph.D., BCBA, Associate Professor of Pediatrics, Division of Developmental and Behavioral Pediatrics, Department of Pediatrics, Medical University of South Carolina
Classification and Measurement of Regression in ASD (PDF – 3.3 MB)	Audrey Thurm, Ph.D., Staff Scientist, Pediatrics and Developmental Neuroscience Branch, NIMH
Developmental Trajectories Associated with Autism Spectrum Disorders (ZIP – 41 MB)	Rebecca Landa, Ph.D., CCC-SLP, Founding Director, Center for Autism and Related, Disorders, Kennedy Krieger Institute, Professor, Department of Psychiatry and Behavioral, Sciences, School of Medicine, Johns Hopkins University
Regression and Autism (PDF – 604 KB)	Catherine Lord, Ph.D., Director, Center for Autism and the Developing Brain, DeWitt Wallace Senior Scholar, Professor of Psychology in Psychiatry and Pediatrics, Weill Cornell Medical College/NewYork-Presbyterian Hospital
An Insider's Perspective on Autism (PDF – 718 KB)	Noah Britton, M.A., Self-Advocate, Member, IACC
Teen Transition (PDF – 639 KB)	Sally Burton-Hoyle, Ed.D., Associate Professor, Eastern Michigan University, Department of Special Education, College of Education, Member, IACC
Nevada's Autism Treatment Assistance Program (ATAP) (PDF – 1.2 MB)	Jan Crandy, Case Manager, Nevada's State Autism Treatment Assistance Program, Member, IACC

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