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IACC Town Hall Meeting - May 3, 2008

meeting agenda Agenda
Time Event
10:00 a.m. Welcome

Isaac Pessah
Director, Center for Children’s Environmental Health and Disease Prevention
UC Davis
10:05 a.m. Opening Remarks

Samuel Wilson
Acting Director, National Institute of Environmental Health Sciences (NIEHS)
10:15 a.m. Interagency Autism Coordinating Committee (IACC) Strategic Planning Process to Date

Cindy Lawler
NIEHS IACC representative
10:30 a.m. Introductory Remarks from Panel I Moderator

Michael Chez
Director, Pediatric Neurology, Sutter Neuroscience Institute, Sacramento California

Panel I (morning session): ASD Treatment: Research Priorities for Evidence-based Practices
Goal: Stimulate discussion about the range of treatments being used; develop recommendations about research priorities including issues of efficacy and safety.

Description: A range of conventional and alternative/complementary approaches are being used by parents and clinicians to treat children with ASD, yet many have not been studied in controlled clinical trials. How can a stronger evidence base be established to inform the treatment of individuals with ASD?
10:40 a.m. Perspectives from Panel Members (5 members, 5-10 minutes each)
  • Sally Rogers, Professor of Psychiatry and Behavioral Sciences, M.I.N.D. Institute, UC Davis Medical Center
  • Randi Hagerman, Professor of Pediatrics, Medical Director, M.I.N.D. Institute, UC Davis Medical Center
  • Lynne Mielke, Founder, Developmental Spectrums East Bay Medical Clinic, Pleasanton California
  • Nancy Duley, parent/advocate
  • Claire Bothwell, parent/advocate, Board Chair Emeritus, National Autism Association
Lyn Redwood, IACC public representative, Cofounder, Coalition for Safe Minds
11:20 a.m. 50 Minutes for Open Dialogue with Attendees
12:10 p.m. Lunch (on your own)
1:10 p.m. Introductory Remarks from Panel II Moderator

Isaac Pessah
Director, Center for Children’s Environmental Health and Disease Prevention
UC Davis

Panel II (early afternoon session): ASD Interventions: Beyond the Young Child
Goal: Stimulate discussion about the differing needs of older children and adults with ASD and review the current state of science in this area; develop research recommendations for interventions that target this underserved population.

Description: To date, autism treatment research has been focused primarily on young children, with little attention directed at treatment/interventions for older children, adolescents and adults with ASD. Community views about treatments and intervention across the lifespan are needed to develop appropriate research questions.
1:20 p.m. Perspectives from Panel Members (4 members – 5-10 minutes each)
  • Pilar Bernal, ASD Regional Director, Kaiser Permanente, Northern California
  • Ruth Christ Sullivan, first president, Autism Society of America; founder and first executive director, now President, Autism Services Center, Huntington West Virginia
  • Dena Gassner, ASD advocate, Director, Center for Understanding, Franklin Tennessee
  • Rick Rollens, parent, Cofounder, UC Davis M.I.N.D. Institute
Lee Grossman, IACC public representative, President and Chief Executive Officer, Autism Society of America
2:00 p.m. 50 Minutes for Open Dialogue with Attendees
2:50 p.m. Break
3:10 p.m. Summary of Panel I & II Recommendations–Michael Chez, Isaac Pessah
3:25 p.m. Open Dialog with IACC and Public
  • Samuel Wilson, Acting Director, NIEHS
  • Cindy Lawler, IACC representative, NIEHS
  • Lyn Redwood, IACC public member
  • Lee Grossman, IACC public member
4:25 p.m. Closing Remarks

Samuel Wilson
Acting Director, NIEHS

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meeting comments Public Comments

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meeting slides Slides

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May 3, 2008
Interagency Autism Coordinating Committee

Cancer Center, University of California Davis Medical Center

Meeting Goals and Format

An Autism Town Hall meeting was held at the University of California Davis Medical Center in Sacramento California on May 3rd, 2008. The daylong meeting was sponsored by the IACC for the purpose of soliciting public input regarding research priorities for the treatment of autism spectrum disorders (ASD).

The meeting consisted of a series of panel discussions, with opportunity for public comment after each panel. The panels were comprised of treatment researchers, clinicians, service providers and public advocacy representatives. Three IACC representatives, Cindy Lawler, Lyn Redwood and Lee Grossman, were present at the meeting and participated in panel discussions. The morning panel was designed to stimulate discussion of a range of conventional and alternative/complementary treatment approaches that are being used currently, with the goal of developing recommendations about research priorities for establishing safety and efficacy of these approaches. The afternoon panel was focused on discussion about the differing needs of older children and adults with ASD, with the goal of developing research recommendations for treatment and interventions that target this underserved population.

The meeting was attended by approximately 125 individuals and included parents, researchers, representatives from advocacy groups, state government and service providers. Public comments were summarized and provided to the full IACC at the May 12 meeting for their consideration during development and refinement of the Strategic Research Plan.

Research Recommendations from Panel 1

Panel 1: The following research areas and resource needs were identified in the morning panel focused on treatment needs for younger children with ASD:

  • Medical and psychiatric comorbidities associated with ASD
    • Identify and characterize gastrointestinal, metabolic, immune dysfunction
    • Develop and evaluate treatments for underlying oxidative stress, mitochondrial impairment, chronic viral/bacterial/fungal infections
    • Determine role of xenobiotics in medical comorbidities and implications for treatment/prevention
    • Study epilepsy/EEG abnormalities
    • Develop treatments to target anxiety in individuals with ASD and support research to investigate possible mechanisms linking anxiety in individuals with ASD to an enhanced sensitivity to ‘overstimulation’
    • Develop treatments for sympathetic ‘overdrive’ i.e. possible imbalance in sympathetic and parasympathetic nervous systems
    • Determine role of stress in gastrointestinal disturbance
    • Develop treatments for microglial activation and neuroinflammatory brain processes.
    • Investigate low cholesterol levels
  • Autism heterogeneity
    • Characterize autism phenotype (e.g., Autism Phenome project)
    • Develop biomarkers for oxidative stress, inflammation, immune dysfunction, toxicological impairment, gastrointestinal function and nutritional status.
    • Develop improved biomarkers of treatment response, with treatments tailored to symptom profiles
    • Identify unique needs and develop appropriate treatment/interventions for higher functioning individuals with ASD
    • Develop definitions and study early predictors of ASD adult success in life
  • Vaccines as risk factors for ASD
    • Compare ASD rates in highly vaccinated vs. unvaccinated populations i.e. home schoolers, chiropractors, Amish
    • Compare ASD rates in unvaccinated vs. vaccinated high risk siblings of individuals with ASD
    • Examine role of timing, number of vaccinations and synergy of vaccine components, antigens and adjuvants in adverse effects
    • Determine whether nutritional supplementation to increase glutathione before vaccination reduces risk of ASD
  • Novel treatments with reported benefit utilized by Defeat Autism Now! (DAN!) clinicians
    • Investigate the use of comprehensive nutritional assessments (vitamins, minerals, fatty acids, antioxidant status) and targeted supplementation to correct identified deficiencies
    • Determine efficacy and safety of chelation therapy in children with documented body burdens of metals including drug, dose, method of administration and the need to have adequate mineral status and gut function prior to initiating therapy
    • Investigate the use of intravenous immunoglobulin (IVIG) in children with documented immune system impairment.
    • Investigate the use of hyperbaric oxygen therapy (HBOT) in children with decreased brain perfusion with regard to improvement in perfusion, behavior and oxidative stress
    • Investigate the role of antivirals or antifungals in those with elevated viral titers and evidence of chronic active viral or fungal infections
    • Investigate biochemical pathway impairments in autism, i.e. methylation and transulfuration
  • Role of toxicants/xenobiotics
    • Conduct large studies to look at biomarkers of environmental stress e.g., urinary porphyrins, cytokines, chemokines
    • Determine the role of environmental toxicants in the etiology of ASD and in medical comorbidities associated with ASD e.g., oxidative stress, mitochondrial injury, immune, gastrointestinal and neurological impairment
    • Develop treatments that target toxicological manifestations and organ system impairment
    • Determine the role of chronic viral/bacterial/fungal infections, including Lyme disease and Herpes simplex virus, in the etiology and/or expression of ASD and associated comorbidities
  • Research support
    • Develop/apply research approaches that can address complex treatment protocols with multiple simultaneous or sequential interventions to target deficiencies in different systems
    • Retrospectively investigate documented cases of recovery in those who utilized novel treatments for clues with regard to heterogeneity, biomarkers, risk factors and outcome measures
    • Need for double blind placebo controlled clinical trials of dietary/nutritional, oxidative stress treatments, intravenous immunoglobulin, diflucan, hyperbaric oxygen therapy, chelation, low dose naltrexone, acupuncture
    • Use expertise of DAN! Clinicians to assist in design of treatment trials in ASD
    • Provide support for DAN! Physicians to conduct clinical research
  • Infrastructure and capacity needs
    • Support clinical networks to rapidly test new treatments
    • Support brain and tissue banks
  • New mechanisms to fund research
    • Provide special emphasis review panels
    • Consider reengineering of funding process, with accelerated review and funding
  • Develop/apply systems biology approaches that can address complex interacting processes operating in ASD
  • Support training/education of pediatricians and medical providers
    • Improve awareness of ASD heterogeneity, comorbidities and need for early intervention
    • Improve recognition of ASD and treatment options in older individuals
  • Determine efficacy of combinations of interventions (e.g., behavioral, medical and educational)
  • Conduct translational research—research that is directly relevant to immediate treatment needs of families
  • Develop a registry to track individuals with ASD (e.g., diagnostic characteristics, medical conditions, treatments and services, outcomes)
    • Address privacy and other concerns regarding information collected
    • Use registry to identify best practices
  • Genetics
    • Conduct research that capitalizes on families with multiple affected members
    • Use clues from other conditions (e.g, Fragile X) to develop treatments to enhance synaptic function
    • Conduct research to identify genetic variability (SNPs) in environmental response genes (e.g., genes involved in oxidative stress, xenobiotic metabolism) and determine their relationship to ASD risk
    • Study autism rates in other countries for clues regarding genetic and environmental influences
  • Additional areas for treatment research
    • Determine the optimal timing for initiation of ASD treatment(s)
    • Conduct research regarding reversibility of damage and potentially regenerative treatments e.g., fibroblast growth factor, stem cell therapy
    • Determine best practices for treatments in schools; compare effects of mainstreaming vs. special education classes
    • Study possible improvement of ASD with fever
    • Investigate acupuncture
    • Research cause and treatment for constipation
    • Research causes of low muscle tone
    • Develop targeted interventions for stereotypies i.e., ‘stimming’
  • Study administration of immune globulin products during and after pregnancy
  • Study ASD in different cultural settings
  • Determine the association of ASD with prematurity and low birth weight
  • Investigate apnea and airway obstruction in autism

Research Recommendations from Panel 2

The following research areas and resource needs were identified in the afternoon panel, which focused on treatment/intervention and services for older children and adults with ASD.

  • Diagnosis and surveillance of ASD
    • Develop effective methods for screening assessment and diagnosis of ASD across the lifespan
    • Update DSM IV + R criteria so it addresses the symptoms displayed over the lifespan
  • Multidimensional services research
    • Develop and apply research approaches that provide a comprehensive assessment of the degree of integration and effectiveness of a range of services and supports for individuals with ASD, across multiple agencies and research domains
    • Create model programs and determine their effectiveness in larger systems of care
  • Economic research
    • Determine economic costs and benefits associated with various treatments/interventions
  • Quality of Life (QOL)
    • Develop improved QOL measures for adults with ASD (beyond IQ and language)
    • Develop interventions to improve QOL
    • Require inclusion of QOL measures in clinical studies of ASD
    • Develop strategies to enhance the ability of persons with ASD to form meaningful social relationships outside of their family
  • Developmental needs of individuals with ASD across the lifespan
    • Conduct research to address vocational, rehabilitation, recreation, housing needs of individuals with ASD
    • Study challenges of adolescence for individuals with ASD—e.g., role of pubertal hormones, sexual behavior
    • Remove clinical trial age limits
    • Focus on aging--cumulative impact of stressors
    • Determine unique needs of senior citizens with ASD
    • Identify and develop methods to reduce cumulative impact of chronic biomedical conditions
    • Conduct research to determine effective practices for transitions across life stages (e.g., school to employment in community, home to independent living)
    • Study efficacy of sensory integration and movement interventions in older populations with ASD (e.g., above age 5)
  • Family members
    • Study unaffected siblings, grandparents
    • Develop practices to reduce stress and/or provide appropriate support for family members of individuals with ASD
    • Develop and evaluate ways to enhance active involvement of family members with treatment/intervention of individual with ASD
  • Research aimed at high functioning individuals with ASD
    • Develop holistic support services for higher functioning individuals with ASD that increase well being and quality of life
    • Conduct research to identify effective supports for higher functioning individuals with ASD in employment and postsecondary education settings
  • Develop methods for more rapid and effective translation of research findings regarding effective practices for ASD to individuals providing direct care
  • Identify traits and characteristics of workers who provide direct care to individuals with ASD that are predictive of successful outcomes
  • Conduct research to identify, understand and develop efficacious treatments for any co-existing mental heath problems in persons with ASD
  • Identify the potential role of a child’s ASD in parental decisions to homeschool that child, as a means of better understanding the limitations of existing public school programs for serving this population.
  • Increase inclusion of individuals with ASD in research priority setting
  • Determine impact of ASD on criminal justice system
  • Ascertain undiagnosed individuals with ASD that may be serviced under programs targeted at domestic violence, homelessness and drug/alcohol abuse.
  • Conduct analysis of work therapy
  • Apply caution in recommending new treatments and vigilance in monitoring safety and efficacy; as the evidence base changes, treatments once thought to be promising may instead produce permanent harm

Other recommendations from public participants

In addition to research recommendations, many of the public comments were directed at the need for services and community supports. Many of these comments emphasized the immediacy and urgency of service needs, and their higher priority for affected families relative to research needs. The following areas/needs were among those highlighted:

  • Address limitations of current Medicaid waiver programs
    • Current reliance on diagnosis of mental retardation, lack of autism- specific programs
    • Portability of Medicaid waiver funding across state lines. At this time, the inability to transfer those funds severely limits clients who cannot get appropriate services in their state, and/or their families who need to relocate for job or other needs
  • Increase capacity for service and care providers
  • Support legislation to increase funding for services
  • Increase acceptance by and in the community
  • Raise awareness of unique needs and concerns of higher functioning individuals with ASD, especially in areas of employment and secondary education
  • Help individuals and family members to learn about and access available services (such efforts should accommodate potential difficulties of people with ASD in the areas of executive function and the ability to manage stress, as these can present a huge barrier for accessing and managing the array of available services)
  • Recognize that parents with ASD may have difficulty advocating effectively for their children in educational settings; provide assistance, as needed e.g., Individualized Education Plans (IEPs)
  • Provide training/resources to address unique dental needs of adults with ASD (e.g., special tools for those individuals with ASD who are sensory-avoidant)
  • Expand Town Hall program to other locations

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