IACC Town Hall Meeting - May 3, 2008

Agenda
Public Comments
Slides
Summary

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

Public Comments

Compiled Public Comments (PDF – 200 KB)

IACC Meeting Slide Set (PDF – 177 KB)

Summary

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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