[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
The Federal Response to Autism: Where Is the Urgency?’ An Open Letter from Peter Bell
A Government Affairs Update from Autism Speaks Executive Vice President for Programs & Services Peter Bell May 29, 2012
May 29, 2012
Almost two months have passed since the Centers for Disease Control and Prevention (CDC) released the shocking results of its latest prevalence study—1 in 88 American children, 1 in 54 boys, now has an autism diagnosis. This news was accompanied by the release of an Autism Speaks/Goldman Sachs study, which estimates the annual cost of autism in the U.S. has soared to $126 billion, a burden borne in large part by families. These statistics confirm what we have known for some time: AUTISM IS A PUBLIC HEALTH EMERGENCY THAT DEMANDS URGENT ACTION. We need a national plan to meet the challenge. We need a coordinated, strategic approach, among all federal agencies and the administration, to ensure that funding and research for autism is adequate, focused and effective.
These developments mark a reversal in positive momentum since last September when President Obama signed the Combating Autism Reauthorization Act (CARA), which extended the federal investment in autism at current levels over the ensuing three years. As part of CARA, the Interagency Autism Coordinating Committee (IACC), which steers federal autism research, was to be reconstituted. The new IACC not only has yet to meet, its first meeting won’t be held until July 10th – a full nine months after CARA became law. That’s exactly 25% of the way through the three year authorization period. In the midst of the autism epidemic, this is an unconscionable situation. Where’s the urgency?
Unfortunately, a coordinated, strategic approach to autism has yet to materialize. A $21.3 million annual appropriation authorized under CARA for the CDC to continue tracking autism prevalence, to research the multiple causes of autism and to promote early detection is now in jeopardy as a result of the current federal budget process. The White House broke with established procedure by placing the appropriation within the politically sensitive Affordable Care Act in President Obama’s proposed budget for fiscal year 2013. The appropriation is now in danger of failing due to politics, rather than any debate over its merits. There was no reason to inject the CDC funding into a political debate that has nothing to do with autism. There is no room for politics in autism.
Our concerns don’t stop there. In structuring the Affordable Care Act of 2010, Congress made it very clear that behavioral health treatments, including applied behavior analysis for autism, must be a part of the Essential Health Benefits package. Every health plan offered through the state exchange system is required to include these benefits by 2014. The Department of Health and Human Services (HHS), which is charged with implementing the law, needs to urge policymakers at all levels of the government to abide by the intent of the Congress. Senator Robert Menendez of New Jersey, who had the language inserted in the version of the bill that became law, along with Representative Mike Doyle, other members of Congress, and Autism Speaks, have pressed the Obama administration on this oversight, but our shared concerns have yet to be addressed.
As these concerns from the autism community mount, we have watched the White House roll out a bold new plan for fighting Alzheimer’s that is commendable both in spirit and in purpose. The “National Plan for Addressing Alzheimer’s Disease” was launched in early 2011 and has already resulted in a large infusion of additional funding ($150 million) to support research, provider education and public awareness. Last week, HHS Secretary Kathleen Sebelius announced even more actions including the funding of two major clinical trials, the development of new training for clinicians, and a new public education campaign and website to help families and caregivers find the services and support they need. We commend the administration for taking these bold steps to fight a medical condition that severely impacts millions of Americans during the final years of their lives. Those affected by autism need and deserve a similar focused and committed strategy from the federal government.
On matters of policy and funding, Autism Speaks and the autism community have succeeded when we’ve made our voices heard. Our active and growing grassroots base of advocates has been there when we issued the call to rally. We will continue to press our case with the Obama administration and members of Congress as events unfold this year. We ask that you join with us in this important effort. You can help by following our messages, staying informed by visiting our Autism Votes website, signing up to receive updates and continuing to respond when there is a need to take action. As always, we thank you for your unwavering support in advocating for the autism community.
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.