[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]

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October 23, 2009 IACC Meeting Summary 

Bethesda, MD (October 23, 2009) — The Interagency Autism Coordinating Committee (IACC) met on Friday, October 23, at the National Institutes of Health, in Bethesda, Md.

IACC Chair Thomas Insel, M.D. opened the meeting by reporting that NINDS Director Story Landis, Ph.D. had resigned as a federal member of the Committee. In a previous IACC meeting, Dr. Landis had left behind written comments concerning remarks that public member Lyn Redwood had made. Dr. Insel apologized on behalf of the IACC to Ms. Redwood. He said that this situation served as a “teachable moment” for the committee to ensure it was fulfilling one of its core values — to engage in respectful dialogue. He also expressed his concern that the public has lost trust in the IACC. He challenged the members to lead with the power of ideas and to regain this trust through respect of the diversity of views in the autism community.

Following the opening remarks by Dr. Insel, the morning session began with a panel called “Families Living with Autism,” moderated by Autism Speaks Executive Vice President Peter Bell. The panel consisted of a diverse group of individuals with autism and families affected by autism. It included two individuals who presented on their own behalf as well as parents who shared the stories of their children who could not speak. These panelists included individuals who had severe co-existing medical conditions; an individual who was recovered; a highly capable, self-reliant individual; and several children and adults dependent upon parents as their primary caregivers. The panel was intended to inform members of the reasons for their service on the committee to help coordinate the federal response to autism. Brief biographies of the panelists can be found here.

Following this panel, Tony Charman, Ph.D., of the University of London presented on Applied Behavioral Analysis based treatment. Dr. Charman summarized the state of research on evidence-based behavioral treatments. He reported on the challenge of not having enough clinical trials in the field. His conclusions are that ABA treatments are the most rigorously studied and have the strongest base of empirical support; most studies show ABA treatment produces positive outcomes at the group-level; individual studies show that outcomes vary by individual; and recommendations regarding ABA should be made at the clinical level.

The afternoon session began with an update from Michael Huerta, Ph.D., Director, National Database for Autism Research (NDAR). Dr. Huerta said that his team has made significant progress in migrating data from the NIH-funded STAART and CPEA programs since the July meeting. This migration is projected to be completed by May 2010. They are also aggressively pursuing researchers to remind them of their obligation to submit data. Recovery Act funds are being used to support the federation of data, including the Autism Speaks AGRE database, and to supplement grants for NDAR data collection purposes. NDAR will attempt to leverage important scientific breakthroughs in the areas of high-volume data collection; computation and informatics; and collaborating laboratories. This data allows NDAR to associate a single research participant’s genetic, imaging, clinical assessment and other information even if the data were collected at different locations or through different studies. 

The Services Subcommittee reported on feedback received from the public at its Town Hall meeting held on July 24 in conjunction with Autism Society of America Conference in Chicago. Key findings from the public meeting were the need to provide vocational training; the challenges to implementing a continuum of services for military families and transitioning adults; the importance of addressing family values; and the need for research in best practices.

Dr. Insel reported on the significance of Recovery Act funds in the field of autism research in particular. The preliminary estimate of autism-specific funding is almost $89 million which will be allocated to two-year grants. He said that autism was the only disease to receive a specific funding opportunity, perhaps because the IACC had a strategic plan in place prioritizing funding. Recovery Act funds allowed NIH to fund a short-term objective from each question of the Strategic Plan. The peer-review process for allocating Recovery Act grants included 20 percent public members, including individuals affected by autism. Autism research funding can be found on the new NIH database called RePORT.

Finally, the IACC began its deliberations on its annual update of the Strategic Plan for Autism Research. The deliberations resulted in establishing a process for incorporating the feedback from the Scientific Workshops held September 30-October 1. The IACC members who served as liaisons to each scientific panel will take back themes raised by the IACC to each panel. The panel will review these questions raised by the IACC and the liaisons will report back so the IACC can decide how to integrate into the Strategic Plan. The IACC will begin to work on revisions at its next scheduled meeting on November 10. 

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Families Living with Autism Panel

Interagency Autism Coordinating Committee (IACC) Meeting 

Rory Stephens, age 4 
Bethesda, Md.
Parents: Nora Fitzpatrick & Robert Stephens

Rory was born in October, 2005. During her first year of life, she seemed to be developing normally. She met all of her milestones and was fond of the “Wiggles” song, singing some words, doing the hand motions/dance and imitating her older sister. After her first birthday, her parents noticed that she was starting to “disappear”. Within months, these skills were gone completely. When they raised concerns to their pediatrician at 18 months, they were told “don’t worry, she doesn’t have autism.” A year later, Rory was diagnosed with PDD-NOS. After a brief stint at a county-based special needs program, Rory is currently enrolled in an intensive behavioral program receiving 30 hours of treatment per week making excellent progress.

Alex Gorman, age 15 
Chappaqua, N.Y.
Parent: Judy Chinitz

Alex was born in March, 1994. As a baby, he had a number of digestive issues including excessive vomiting, difficulties eating solid foods and bouts of diarrhea. He experienced some regression between ages 1-2 and was diagnosed with autism after his 2nd birthday. Alex’s health continued to deteriorate after he received a flu shot at 2.8 years. He required IVGG treatment for 7 years, as well as steroids and many other medications to address his immunological challenges. At 9 ½ years old, a feeding tube was recommended but instead, his mom tried the Specific Carbohydrate Diet which cleared up many of these problems. Today, Alex attends the BOCES Aim Program in White Plains, N.Y. He recently moved to a less restrictive classroom.

Alex Swartz, age 17 
Danville, Calif.
Parents: Elizabeth Emken & Craig Swartz

Alex was born in August, 1992. He was diagnosed with autism at the age of 4 after two years of seeking a proper diagnosis. He was one of the first clients enrolled in the UCLA Lovaas remote program. He received numerous biomedical treatments in addition to intensive behavior interventions. Alex continues to benefit from a number of treatments including dietary supplements, gluten-free diet and pharmacological medicines. Alex is currently a junior at San Ramon Valley High School where he is expected to attend until he is 21. His interests include math, computers, and anything Disney.

Jason Ross, age 17 
Litchfield, Conn.
Parent: Nancy Ross

Jason was born in April, 1992. He was diagnosed with infantile autism by a developmental pediatrician at age 3. Later that year, Jason received a PDD diagnosis from Yale Child Study Center and a similar diagnosis by Dr. Deborah Fein at the University of Connecticut and autism expert Dr. Michael Powers. At age 7, Jason started to emerge from his autism. By 11, he no longer met the criteria for autism. Today, Jason is a senior at Chase Collegiate, an academically rigorous private school in Waterbury, Conn. He is a member of the National Honor Society, an AP scholar and a 3-time varsity athlete. His future plans include attending college and a career where he can have an impact. In his words, he “beat autism”.

Adam Berman, age 23 
Potomac, Md.
Parents: Jeff & Diane Berman

Adam was born in September, 1986. He was diagnosed with autism/PDD at 18 months. His parents were told he was “profoundly retarded”. After years of intensive ABA therapy at a self-contained preschool, Adam learned to speak around 4.5 years. He was mainstreamed by the 1st grade and eventually graduated from high school with his peers. Adam attended the University of Maryland and participated in an honors program. Currently, he works as a paraprofessional, teaching middle school students with autism. In addition, he recently started graduate school at George Washington majoring in Special Education. Adam’s plans for the future include furthering his education and working as a professor and/or researcher.

Troy Cunningham, age 38 
Washington, D.C.
Parents: Sondra & Tyrone Cunningham

Troy was born in May, 1971. He was diagnosed with infantile autism at the age of 2. Troy attended an Easter Seals program until age 5, the American Foundation School for Autistic Children from ages 5-7 and then St. John’s Child Development Center until age 22. As an adult, Troy participated in the St. John’s Community Services Adult Rehabilitation Program and PSI Adult Day Program for 15 years. Today, Troy lives at home with his parents. As a participant of the National Children’s Center Adult Day Program, he received his first paying job last year and currently works 20 hours/week at Value Village Thrift Store. Troy’s parents are working with several other families to find a group living situation for their adult children with autism.

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Note/Warning:

Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid. 

ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.

The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work. 

What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.

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[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]

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Fact: Vaccines Do Not Cause Autism.

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