[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
A DAY IN WASHINGTON
An Open Letter To All Families From Jon Shestack, co-founder of CAN
On Wednesday, May 5th, I had the privilege of joining Doug Flutie (star quarterback for the Buffalo Bills and the father of a little boy with autism) and Anthony Edwards (Actor and CAN Honorary Board member) for a trip to Washington, D.C. to help garner support for the autism legislation recently introduced in the House and Senate.
It was an amazing day – one which resulted in co-sponsorship from at least 5 additional Senators and 12 additional Congressman. We were also able to move closer to getting a commitment from Senator Bill First (R-TN) and Representative Michael Bilirakis (R-9th FL) to hold joint hearings on autism research.
Following is a brief chronological account of the day:
The day began bright and early with a 6:30 a.m. appearance by Anthony Edwards and myself on the local ABC affiliate. We groggily questioned the usefulness of this until two hours later when we met Senator Trent Lott who said, “Oh yeah, I saw you fellas on TV this morning.”
Our first official appointment of the day was with Representative Jim Greenwood of Pennsylvania. Anthony Edwards, CAN member Elizabeth Emken and I walked into his office at 9:00 a.m. happy to see him, but happier still to see Doug Flutie already there talking to Jim and posing for pictures with the staff and Flutie Flakes.
Jim is an original sponsor of HR 997 and is extremely dedicated to getting this legislation passed. Jim helped us strategize on how to persuade Rep Bilirakis, Chair of the Commerce Subcommittee on Health and Environment, to grant a hearing on autism.
Our next stop was Senate Majority Leader Trent Lott (R-MS). He agreed to cosponsor the bill while we were in his office – our first major victory of the day. His endorsement will send a powerful message to other Senate Republicans.
Next we were joined by representatives from NAAR and ASA for a meeting with Representative Chris Smith of New Jersey – his district includes Brick Township. Chris is the original sponsor of HR 274 and is amazingly informed and very aggressive about pushing passage of this legislation.
At 10:30 a press conference and staffers seminar were held. The room was packed with cameras, all eager to get a shot of Flutie and Edwards, but it was also packed with Senators, Representatives and families.
Sharing the stage, and surrounded by enlarged pictures of children from around the country who are affected by autism, was Jim Greenwood, Chris Smith, Senator Santorum (R-PA), Representative Qubin (WY), Representative Boehlert (R-NY), Anthony Edwards, Doug Flutie and Connie Morella, who represents the district where the NIH is located, and myself.
Greenwood then took us to the Tuesday Lunch Club, a group of 20 or so moderate Republicans who gather for lunch every Tuesday. We were supposed to catch up with Rep Porter there, but instead Greenwood slipped us into the room and let us address the crowd. Five minutes later he jumped up and demanded a show of hands from those who would co-sponsor the bill. Representatives looked quickly to staffers for approval, staffers quickly nodded their ok, and at least 8 hands shot up in the air.
This was typical for Jim, who remained fired up throughout the course of what was a very long day. At one point he went over to Elizabeth Emken from CAN and demanded the list of cosponsors that she always carries with her. “Give me that.” he said, “I’m gonna get some more.” He plunged into the House chamber and came back in five minutes with three more names. If you have a moment, whether you are from his district or not, please drop Greenwood a short note thanking him for all of the work he’s done.
After our Tuesday Lunch Club appearance, we were finally able to meet with Porter (R-IL) for a brief time. While sympathetic, his main interest is in keeping the overall NIH budget high. This is, of course, also in our best interest and is an effort we must make sure to support whenever possible.
Next stop was Senator Slade Gorton’s office. Slade (R-WA) is the original sponsor of S 512 and the grandfather of an autistic child. When we arrived, we were greeted by Kristen Michal (his health aide and one our most devoted supporters), his wife Sally, and good news from Slade – he had just gotten Senators Cochran (R-MS) and Snowe (R-ME) to cosponsor as well! We had the opportunity to spend some time with Sally Gorton who is very well informed and eager to see us succeed.
In the hallway we ran into an aid for Senator Hagel (R-NE) whose brother just happens to work in the lab of Rudy Tanzi, a world renowned geneticist and member of AGRE’s Steering Committee. He assured us that he would bring another sponsor on board.
We then stopped in to see Senator Frist (R-TN). Frist, the Chair of the Senate Health, Education, Labor and Pensions Committee, was great and asked a lot of questions about AGRE’s progress, which he remembered well from our last visit together. He wants to have joint hearings with the House on autism — either on our legislation alone, or as part of an omnibus child health bill.
Then back to the anteroom of the Senate chamber to meet with Arlen Spector (R-PA). While Arlen has always been very helpful, this meeting did not go as well as we had hoped. In talking to his staff, we learned that he was recently hammered by ABC news reporter John Stoessel who did a piece about how stars come to DC, visit Arlen’s committee and get money for AIDS or diabetes or breast cancer, thus politicizing the NIH process. Never mind that the NIH is already political, paralyzed by infighting, and has less civilian oversight than the Pentagon.
In any event, Arlen ended the meeting by saying he would look at the bill carefully and by reminding us that he had always been helpful before. That is true, and if the bill makes it through authorization, we are almost certain that the Appropriations Committee will fund it.
Our final meeting was with Bilirakis. He was compassionate and swamped, and while a little nervous about singling autism out over all other diseases, ultimately I believe he can be swayed. THE KEY WILL BE SIGNING UP EVERY OTHER MEMBER OF HIS COMMITTEE.
We are still working on the final count, but I believe that by the end of the day we were up to over 25 Senators and 110 Representatives!
This is a tremendous accomplishment and one that would not have been possible without the incredible dedication of families and friends from CAN, NAAR, ASA and other organizations across the country.
But we can’t stop now. If you haven’t already, please check out the rest of this site to find out how you, your friends and family can help get even more support for this legislation. And if you have any questions, please call 1-877-422-6228.
We’ll be sure to keep you informed.
Co-founder, Cure Autism Now (CAN)
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
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.