[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
IACC Pledges More Assertive Role in Federal Autism Policy
BETHESDA, MD (February 1, 2013) — The Interagency Autism Coordinating Committee(IACC) has pledged to take a more assertive role in federal autism policy, starting with the issue of assuring ABA coverage is included in all state health insurance exchanges created under the Affordable Care Act (ACA).
Meeting Tuesday in Bethesda, MD, IACC members concluded that the IACC should accomplish more than its minimum charge of drafting an annual update to the Strategic Plan for Autism Research. It was decided that the committee should take an active role in advising the U.S. Department of Health and Human Services (HHS) about public policy affecting the autism community.
The IACC’s Services Subcommittee will meet soon to consider a draft letter to HHS Secretary Kathleen Sebelius advising her on the ACA issue. Although required by the law, only half the states so far are including behavioral health treatment, including ABA (Applied Behavior Analysis), in their essential health benefits packages. The committee members felt strongly that there was a unique and timely opportunity to address this issue and that the IACC had the expertise and charge to advise the HHS Secretary.
During the Tuesday meeting, IACC Chair and NIMH Director Thomas Insel, the IACC chair and director of the National Institute of Mental Health, reported on several research developments that have occurred since the last meeting in July, 2012 including:
- New findings on brain responses to eye gaze and speech are seen in infants who later develop autism diagnostic biomarker (Current Biology)
- New autism diagnostic markers based on genetic pathway analysis are being tested (Molecular Psychiatry)
- Research suggests that immune activation during the prenatal period in mice that leads to autism-like behaviors and permanent immune dysregulation
- Elevated maternal C reactive protein, a marker of inflammation, in early blood spots was found to be predictive of autism in Finland national cohort (Molecular Psychiatry)
- PET study showing microglial activation in the brains of adults with autism (JAMA)
- Maternal infection with febrile episodes during pregnancy — mid second trimester – showed about a two-fold higher risk for ASD (Pediatrics)
- Rare complete gene knockouts in humans – significant percentage of individuals have rare mutations that explain autism (Neuron)
- Exposure to high levels of traffic pollution during pregnancy and early postnatal life was found to be associated with higher risk of ASD (JAMA Psychiatry)
- A review was published of nonmedical (behavioral) interventions for children with ASD, along with recommended guidelines and future research needs for additional evidence for behavioral interventions through HRSA AIR-B network (Pediatrics, Maglione et al, 2012)
- Comparing cognitive outcomes among children with ASD receiving community base early interventions emphasizes importance of early intervention (Mandell)
- Comparison of healthcare service use between Medicaid and private insurance showed about a four-fold difference with Medicaid offering more services, particularly outpatient behavioral interventions as compared to private insurers (Mandell)
- Elopement in children with ASD is common, can lead to harmful situations, and is stressful for families (Pediatrics)
- Study of developmental trajectories in adolescents and adults for daily skills showed that plateau occurs around 25-30 years of age
- Systematic review of vocational interventions showed that there is extremely little research on what is effective (Pediatrics)
- Review of 1980’s epidemiological studies of Utah autism population suggest that some individuals originally diagnosed with other conditions later are diagnosed with ASD
Members of the committee presented on other developments since the IACC last met.
Specifically, IACC Public Member David Mandell elaborated on the recent paper comparing Medicaid to private insurers. The research shows that a large volume of community services are available through Medicaid that are not available through private insurers and that Medicaid typically provides better outpatient services. He noted that considerable resources are being spent and it should be reviewed how better it can be allocated.
Geraldine Dawson, Autism Speaks’ chief science officer, updated the committee on recent activities that Autism Speaks has undertaken including the funding of science and community grants, and the creation of Delivering Scientific Innovation to Autism (DELSIA), a nonprofit affiliate that will partner with for-profit companies, and the first Autism Investment Conference next month. Finally, she spoke to the timely policy implications of the ACA regulations on Essential Health Benefits. She suggested that the IACC should have an active role in recommending that such benefits be included nationwide.
Read Dr. Dawson’s blog on the meeting here.
The CDC updated the IACC on the Minnesota Somali Project which is jointly funded by Autism Speaks and the NIH. Amy Hewitt, Ph.D. director of the Research and Training Center on Community Living at the University of Minnesota and Mashalyn Yeargin-Allsopp, M.D., chief of the CDC’s developmental disabilities branch, provided the committee with the criteria used to develop the study which included significant community involvement. The results from the study are expected during the summer of 2013.
IACC Public Member Jose Cordero, MD, dean of the Graduate School of Public Health at the University of Puerto Rico, presented on an autism prevalence study in Puerto Rico. The study utilized phone surveys to determine a probability sample of autism prevalence for the island with a population of 3.7 million. The survey resulted in a prevalence of 16.2 per 1000, or 1 in 62 children. This prevalence range is within the range of other prevalence data for Hispanics in the US.
The public comments segment of the meeting provided a forum for individuals to present to the IACC. Amy Lutz from the EASI Foundation provided a powerful overview of self-injurious behaviors by people with autism and possible therapies for it. Dena Gassner, MSW from the Center for Understanding, presented on the occurrence of sexual abuse of people with autism. Parent advocate Dawn Loughborough expressed the need for medical screening for mitochondrial disorders. Self-advocate Jake Crosby presented on his concerns that the IACC members were able to objectively look at any potential vaccine-autism link.
Deborah Fein, Ph.D., University of Connecticut Board of Trustees, Distinguished Professor Department of Psychology, Department of Pediatrics, presented on a study of Optimal Outcomes study of Optimal Outcomes in children with autism. The study, funded by the NIH, was a longitudinal review of children who lose autism diagnosis. It showed that, compared to children with ASD who did not lose their diagnosis, those who did (optimal outcome) had higher cognitive and social abilities during early development.
Children who lost their diagnosis were found to have early differences in brain size (larger head circumference), similar to the children who retained their diagnosis. The study raised many additional questions such as what percentage could reach this outcome and whether behavioral interventions suppress interfering behavior. Dr. Fein emphasized that the study did not mean that children outgrow autism as some media reports suggested.
Anjali Jain, MD, The Lewin Group, and Craig Newschaffer, Ph.D., AJ Drexel Autism Institute, Drexel University presented on the Study of Health Outcomes in Children with Autism and their Families. The study reviewed health claims data to compare outcomes and utilization of families with ASD to demographically matched non-ASD families. The study showed that children with ASD were 3.94 times more likely to have gastrointestinal issues and that they had more health care visits than the control group. Conversely, it showed that children with ASD had lower rates of injuries after controlling for co-morbid conditions. The strength of the study is that the large, 10-year data set is representative of the US population and provides a link to parental data. Limits to the study are that it was derived from payment data and thus inherently biased by whatever biases exist in those systems; it did not capture severity of ASD; and was subject to insignificant surveillance bias.
Alan Guttmacher, M.D., Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development, and an IACC member, presented on the National Children’s Study. The study is the largest of its kind with 100,000 participants, 90,000 of which are a birth and pre-natal cohort; 10,000 subjects will be a pre-conception cohort. The study begins in 2013 and will include environmental exposure and biological data. Guttmacher said they expected to be able to find children with ASD by 18 months if not earlier.
The next IACC meeting is scheduled for April 9.
More With IACC
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.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.