[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
IACC Tackles Healthcare Disparities and Access to Care
By Autism Speaks Chief Science Officer Geraldine Dawson, Ph.D.
This week’s meeting of the Interagency Autism Coordinating Committee (IACC) took an unprecedented direction as members argued that it’s time for the committee to provide greater relevance, value and near-term impact on the lives of people in the autism community. Unlike previous years, when the discussion concentrated primarily on science, committee members embraced the idea that IACC’s scope and role should extend beyond developing a strategic plan for research. Members supported a call to make immediate recommendations on a wide range of urgent issues. In particular, members prioritized issues of healthcare disparities, service needs and access to care.
This is a time of urgency for the autism community. Autism Speaks is particularly concerned about how federal healthcare reform will affect insurance coverage for autism services. Currently, only around half of all states plan to include ABA/behavioral health treatments for autism in their health insurance marketplaces. This is disheartening because the Affordable Care Act requires new health insurance plans to cover screening for developmental delays and disabilities by 9 months and autism-specific screenings at 18 months and 24 months. To diagnose a child with autism and then not provide access to treatment would be unethical.
The IACC wrestled with the best way to expedite recommendations to policy makers. In the end, members decided to draft, review and approve a letter without delay. IACC member David Mandell stated that this was a “unique moment in history” when the IACC could have a significant impact. IACC Chair and Director of the National Institute of Mental Health Tom Insel agreed, remarking that focusing the IACC’s attention solely on basic research was akin to “responding to a home that was on fire by analyzing the chemistry of the paint.”
Research has demonstrated the great disparities in access to health care. Within the autism community, children from ethnic minority backgrounds tend to be diagnosed later. On average, they also require more visits to a doctor before receiving their diagnosis. Furthermore, research shows that parents of children with autism have more difficulty accessing services, referrals and coordinated care – and have to pay more out-of-pocket for services in comparison to parents of children with other chronic healthcare conditions. For good reason, some members of the committee called this a matter of “social justice.”
Throughout the meeting, I saw a growing groundswell of support for a stronger focus on issues of immediate relevance to families. As this consensus emerged, a number of IACC members urged us not to lose sight of the remarkable scientific progress taking place. Scientific progress is essential for developing more effective methods of diagnosis, prevention and treatment. Some noted the paucity of evidence-based treatments for adolescents and adults. We need such evidence as the foundation on which we can build future advocacy efforts for improving access and coverage for services and supports through the lifespan of all those with autism.
The Autism Community Is Not The Autistic Community
More With Autism Votes
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.