[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
President Clinton Signs Children’s Health Act, Will Provide $200 Million for Autism Research
CAN Parents were Key to Success
“At 9:30 p.m. on Tuesday, October 17, 2000 President Clinton signed the Children’s Health Act of 2000 into law. The United States government has spoken with compassion and vision for a large group of suffering Americans, many of whom literally cannot speak for themselves in passing this legislation that is tantamount to a federal declaration of war against autism,” says Cure Autism Now (CAN) co-founder Jonathan Shestack.
The Pediatric Autism Research Act of 2000 (the autism title of the Children’s Health Act) includes enhanced epidemiological work by the Centers for Disease Control, the creation of five regional “centers of excellence” for research into autism under the auspices of the National Institute of Mental Health, gene and tissue banking to facilitate research, and education programs on autism for both the medical community and the public at large. The passage of this bill could not come at a more critical time, as every state in the nation is reporting an alarming increase in the incidence of autism that verges on epidemic proportions. This bill is the direct product of over three years of work by parents of autistic children, led by the families of Cure Autism Now.
Probably the most comprehensive child health bill passed in the last ten years, it intensifies federal public health and research efforts on a large number of other health issues facing America’s families. These other provisions of the bill include titles concerning fragile X, juvenile arthritis, asthma, birth defects, hearing loss, epilepsy and traumatic brain injury. As the autism bill wound its way through the House, Senate and various sub-committees, other constituencies who felt they had been ignored sought to attach themselves to the momentum of this legislation. It is very clear that the autism community was the engine that pulled the whole train.
The impetus for this bill came from scientists who told CAN families about the center-based model and its effectiveness in Alzheimer’s, pediatric AIDS and pediatric leukemia. Specifically this is an approach where centers provide basic care and research and are linked in a collaborative network so that any treatment protocols devised at one center get circulated and refined through the entire group of centers. Beginning with the basic concept, three parents in New Jersey (Sallie Bernard, Albert Enayati and Heidi Roger) wrote the very first draft of the bill that was then introduced in the Senate by former Senator Slade Gorton (R-WA). Gorton had a powerful role on the appropriations committee, and he is also the grandfather of a child with autism.
Gorton’s House co-sponsors were Representatives Chris Smith and Jim Greenwood. Smith became alerted to the autism issues because the Brick Township cluster is in his district. Greenwood began his career as a social worker and has real-life experience with families with autism and their struggle to get services. Throughout this three-year process Greenwood served as the bill’s top strategist and head coach. In fact, moving the bill onto the floor involved Greenwood’s negotiation of a truce between the pro-choice and pro-life forces that had never been done before.
“Getting this legislation passed was a long and treacherous process,” says Shestack. “After the bill was introduced, it was necessary to get the attention and educate members of the House and Senate by having hearings called. Hearings don’t happen without tremendous pressure. After hearings are called more pressure is required from constituents to force the bill out of committee and on to the floor. And this has to be done in both the House and the Senate to actually end up with final legislation.”
At every critical juncture families worked incredibly hard. Through an Internet action alert system organized by CAN volunteer Elizabeth Emken, parents were able to turn on a dime and direct their calls to exactly who needed to get them – exactly when they needed to get them. They were also able to call off the pressure when that was necessary.
“At one point late in the process, the child health bill couldn’t get out of committee because Representative Dingell kept tying to attach a tobacco regulation amendment,” said Emken. “This would have been an instant poison pill for the bill. Families across America flooded Dingell’s offices at home and in Washington with calls and faxes. They actually shut down the offices early one afternoon because of the deluge. We were told by staffers that the following morning they checked the CAN web site for action alerts before deciding whether it was safe to go to work.”
If the autism community had any edge other than the rightness of their cause it was access to celebrities. Anthony Edwards, CAN board member and star of the hit television show “ER,” made three trips to Washington. He provided Senate testimony in front of Senator Frist’s committee. Rene Russo made national headlines with her visit to Washington and testimony in front of the commerce committee in the House. CAN Brought Doug Flutie to Washington for meetings with Trent Lott, Senator Frist and Representatives Smith and Greenwood. And finally, Brad Whitford, a D.C. Favorite and newly minted celebrity from “The West Wing” spoke at a press conference where Senator Frist announced that he would try to get the bill passed by unanimous consent.
“Celebrity is a strange commodity,” says Anthony Edwards on his involvement with the passage of this legislation. “You can’t live in it or put it in the bank. And it doesn’t last all that long. The only good thing you can do with it is use it to give a voice to people who don’t have one.”
Though the Children’s Health Act of 2000 is now law, there is still work to be done. Immediately after the passage in the Senate, Cure Autism Now was in Washington meeting with Senators Harkin and Specter to try and ensure that funding is allocated for the autism program in 2001 rather than 2002, as would be customary. It is now certain that funding will flow for the educational and epidemiological components of the legislation in 2001.
Forces at the National Institute of Health (NIH), which historically does not appreciate advice from Congress, may initially resist compliance. However, the NIH is expecting a $2.6 billion increase in funding in 2001. There is no case that could be made to indicate that the funding for autism would subtract from efforts in other diseases. Early drafts of the Health and Human Services’ budget made it clear that Congress expects the NIH to begin this funding in 2001. In addition, Steve Hyman, Director of the National Institute of Mental Health (NIMH), the lead institute on the initiative, has assured Cure Autism Now that it will proceed quickly to implement these new programs.
The Autism Community Is Not The Autistic Community
More With Cure Autism Now
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.