[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
Bob Wright Tells Congress: ‘Face Up to the Crisis’
November 29, 2012
WASHINGTON, DC (November 29, 2012) — Autism Speaks Co-founder Bob Wright told the House Committee on Oversight and Government Reform today the federal government has failed to respond to the nation’s growing autism epidemic with the sense of urgency it deserves. The committee pledged to dig deeper into the issue.
Testifying before a standing room only crowd, Wright said individuals and families all across America living with autism are fed up with the slow rate of progress in finding the causes of autism, the delivery of meaningful treatments and how to better support people with autism throughout their lifespan. He called on the Congress to develop a national strategy to meet the need for a comprehensive approach to autism research, treatment and services.
Wright said the true rate of prevalence of autism in the United States was probably closer to the 1 in 38 rate discovered in South Korea earlier this year through a study funded in part by Autism Speaks, rather than the official 1 in 88 rate determined by CDC. The South Korea study, whose methodology Wright called the “gold standard,” is now being replicated in South Carolina with funding from Autism Speaks.
During the hearing, committee member Rep. Dan Burton (R-IN), who is retiring from Congress, was praised for his many years of commitment to raising awareness of autism and forging a federal response. Burton’s grandson has autism.
The committee chairman, Rep. Darrell Issa (R-CA), opened the hearing by saying, “Congress spends a lot of time discussing and debating issues that are determined by our own philosophical belief on what the role of government should be. Today we are drawing attention to something that has no political affiliation, no partisan allegiance, something much more fundamental and something much more personal.”
In his prepared testimony for the committee, Wright said, “There is no getting around the facts: autism has become an epidemic.” While Autism Speaks is proud of the work it has done since it was founded in 2005, “We cannot, however, go it alone. We need a strong federal partner.”
Wright cited a series of steps Congress should address to improve the federal response to autism and noted two bills that should be passed before the current lame duck Congress ends in January. One is the ABLE bill that would create tax-advantaged savings accounts for people with disabilities to support their future needs; the other is a measure that would enable military families to access ABA. Wright announced in the middle of the hearing that the Senate, in a critical vote, had just taken the first step by adding an amendment to the National Defense Authorization Act that would make autism treatments available to all military families.
While more funding for research is needed, Wright said, it must be invested more wisely. “What has been lacking is a policy that directs funding according to a strategic plan, measures meaningful progress, operates with a sense of urgency, and assures accountability,” he said. “We must expect results that improve the lives of people living with autism today, not just future generations.”
Wright said early diagnosis of children is essential. The average age today for diagnosis is five years; it must be no later than 18 months, he said.
New medicines and treatments need to be developed, but also marketed and made more accessible to families, he said. Wright noted that Autism Speaks has established a not-for-profit affiliate, Delivering Scientific Innovation to Autism (DELSIA), to help do this work which the federal government could support through the National Center for Advancing Translational Sciences (NCATS). In addition, he called for a stronger federal response to vaccine safety.
Access to ABA needs to be improved for all individuals with autism, Wright said, not just on the basis of the insurance they carry. “Autism is a treatable disorder,” he said. “Yet today families across the country continue to fight for ABA benefits, negotiating a complex maze of state and federal laws and often unfair insurance company practices.”
Finally, the federal government must confront the rapidly rising tide of adults with autism and needed supports for continuing education, employment, housing, and community integration, Wright said in the formal testimony.
Chairman Issa and many other members of the Committee pledged to continue to follow this issue carefully during the next Congress which begins in January, 2013.
Written Testimony Provided for the
House Committee on Oversight & Government Reform
Bob Wright Co-founder, Autism Speaks
11/29/2012 02:43 pm ET Updated Jan 29, 2013
It’s Time for a National Autism Strategy
By Bob Wright
Adapted from testimony presented to the House Committee on Oversight & Government Reform on 11/29/12
More than seven years have passed since my wife, Suzanne, and I founded Autism Speaks. During that time, we have seen the prevalence of autism in America nearly double — from 1 in 166 children in 2005 to 1 in 88 today, including 1 of every 54 boys. There is no getting around the facts: autism has become an epidemic.
Autism Speaks began as an idea to give a voice to millions of struggling families around the nation and has materialized into the world’s leading autism science and advocacy organization. We are incredibly proud of what we have accomplished, but we cannot go it alone. We need a strong federal partner.
Behind the numbers are real families who struggle every day, families who cut back or stop working altogether to care for their children or who experience bankruptcy or severe financial problems. And there are American taxpayers who must confront the $137 billion per year cost of autism. The status quo isn’t working. It is time we commit to a comprehensive national strategy for autism.
First, we must continue to fund basic science, but should do so more smartly. The federal commitment to autism research through the Combating Autism Act has been an important first step in understanding the causes of autism. Research into environmental factors no longer is neglected and important work is underway with vaccine safety. What has been lacking, though, is a policy that directs funding according to a strategic plan, measures meaningful progress, operates with a sense of urgency, and assures accountability. We must expect results that improve the lives of people with autism. Through a smarter investment in basic research we can unlock the door not only to autism, but a variety of brain disorders.
Second, we must commit to diagnosing children with autism, regardless of background, no later than 18 months of age. Today, the average age of diagnosis is five years old. That is too late. In addition, research shows that minority children go to the doctor many more times before receiving a diagnosis and receive a diagnosis at an even older age. Such delays are intolerable.
Third, we have to develop and make available effective medicines and treatments. Too often, scientific discoveries gather dust on laboratory shelves or are entombed in the pages of academic journals. We need to speed to market products that improve the lives of people with autism. For our part, Autism Speaks has established a not-for-profit affiliate, Delivering Scientific Innovation for Autism (DELSIA), to help do this work. From Washington, we are looking for the National Center for Advancing Translational Sciences (NCATS) to play a key role in fostering collaboration between public and private efforts at real world solutions.
Fourth, we must recognize and address the disparities in access to proven behavioral health treatments. Autism is a treatable disorder. We have long known the benefits of behavioral interventions that use the methods of applied behavior analysis (ABA). Yet today families across the country continue to fight for ABA benefits, negotiating a complex maze of state and federal laws and often unfair insurance company practices. In Washington, we are treated to the spectacle of federal employees gaining access to ABA if they are civilians, but denied the same access if they serve in the military. Government agencies work at cross purposes and our military families are stuck with the short end of the stick. Even wounded warriors who retire because of combat-related injuries cannot get ABA treatment for their children. This can easily be fixed and it can be done by this Congress. Getting help for any child, let alone the child of a parent who has honorably served our country, should not be so difficult.
Fifth and finally, we need to address the needs of adults with autism. Young adults with autism face real challenges in the areas of continuing education, employment, housing and community integration. The majority of adults with autism are unemployed or underemployed, a tragic waste of potential. Hiring people with autism is smart business — just ask Walgreens or any of the other national employers who have made the investment in our community. People with autism follow the rules and pay attention to details. Give them the support they need and they will succeed.
Like all Americans, adults with autism should be able to choose where they live, with whom they live, and how they live. But the great demand for housing among people with developmental disabilities and the lack of appropriate support services often forces individuals and families to decide whether to develop their own housing or wait indefinitely for their adult child with autism to move out of the family home. A broad range of housing and support options must be made available to meet the needs of people with autism. And they need the financial support that could be provided through tax-advantaged Section 529 accounts. A bipartisan majority of the House and 40 senators are cosponsoring the ABLE act, which would create these accounts.
If the list of what must be accomplished is long, it is because the stakes are very high. On a personal scale, there is this harsh reality: ten years ago, even five years ago, many people reading this would have known autism only from what they read in the newspaper or saw on television. Today, they are the parents or relatives of affected children. Autism has changed their lives, and it continues to change the lives of millions of Americans. We must face up to the crisis.
Co-founder, Autism Speaks
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.