[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
TESTIMONY OF ANTHONY EDWARDS TO THE SENATE
September 14, 1999
TESTIMONY FOR ANTHONY EDWARDS In support of the Advancement in Pediatric Autism Research Act
Because of ER, I have experienced something I believe all of you can relate to. Being in a position where 100’s and 100’s of worthy causes attempt to solicit your support. By way of this testimony I think it will be clear as to why I have dedicated myself to this issue: Autism.
I am speaking on behalf of the 400,000 families in the US, and in particular for the hundreds of families I have come to know as I have worked with the Cure Autism Now Foundation over the past 2 years.
Here are the statistics, the dry stuff that isn’t supposed to make you cry. Autism affects at least 1 in 500 kids. That’s more than Multiple Sclerosis or Downs Syndrome or Cystic Fibrosis. That’s at least 400,000 people in the United States. It strikes children generally between their first and second birthdays. These kids will live as long as you or me. But their parents will not be experiencing slumber parties, graduations, and weddings in June.
Half these kids will never learn to talk. Most will not marry or go to school. They will never live independently. Many will end up in institutions or group homes.
We’re not sure if there’s a real epidemic or if it’s better reporting, but we do know that there are so many more families affected by autism than we realized. In California, where I’m from, the Department of Developmental Services reports a 263 percent increase in autism in the last ten years.
Every day in California, four new families are sitting around the kitchen table in a state of shock having just gotten the diagnosis.
This is how a mother I know put it — sometime before her son’s second birthday, someone crept into her house and took her precious baby’s mind and personality and left his bewildered body behind. If one in five hundred kids were actually being abducted in the United States, it would be a national emergency and so should this be.
And that’s why I’m here today.
In the 1950’s when scientists first started describing autism, it was the heyday of psychoanalysis. Scientists blamed autism on bad parenting, trauma, refrigerator mothers. Because of this tragic mistake parents were stigmatized. Parents never organized, serious scientists did no research, and a generation of children was lost to medical progress.
Gradually people realized that autism was a medical problem, but they thought that it was simply incurable. So the scientific knowledge grew and matured all around the subject. Genetics imaging, immunology, are light years ahead of where they were, but they were never directed towards autism.
Five years ago my friends Jon and Portia watched in horror as their son seemed to vanish in front of their eyes. They turned to the medical establishment. The doctors said, “Oh don’t worry about it, he’s a boy, they talk later, Oh he’ll grow out of it.” Six months and five different specialists later someone finally said he probably has autism. They asked, what should we do? And the doctor said, “There’s nothing to do.” They were told, “Hold on to each other and cry and then move on with your lives.”
That was it. No hope, no advice, just ignorance.
They didn’t accept that answer. They explored every therapy, every theory, every miracle cure, everything you would do for your child. When those weren’t working, they said well there must be something new, some cutting edge research. But it simply didn’t exist.
Of 20,000 abstracts that year at a Society for Neuroscience meeting, five were on autism. There were maybe a dozen people in the whole country doing research on autism and of those, only half had talent and financial support.
Jon and Portia went to the NIH, and the NIH said they were working hard on autism. So they asked, how much are you spending on it? No one would tell them. Jon would get up every morning at 6:00AM and start calling the individual institutes until he could get an answer, working his way down to the sub-sub-accountants who would go through the files and help him piece together a picture. The answer at the time was less than five million dollars a year. I know it’s not the only way to measure things, but that’s less than 12 dollars a year per person, even though autism costs the nation at least 13 billion a year.
Don’t ever get between a lioness and her cubs and this mother was not going to let the status quo hurt her child. Thus, Jon & Portia started CAN, the Cure Autism Now Foundation.
Jon and Portia took the small amount of information there was about autism and started presenting to the top neuroscientists. They all said the same thing. There is unbelievable potential for progress. With the best minds and the latest technology, early detection, prevention, better treatment and even a cure is possible.
They went back to the NIH, this time with an organization of thousands of families and this is what they found: Incessant turf battles between the various funding institutes. No coordination. Meetings scheduled competitively. They had to go to congress to force the four agencies to form a committee to cooperate. They had to go again to get the NIH to pressure the researchers they funded to cooperate with each other. They were resisted at every turn by officials who said don’t tell us how to do science. When they couldn’t get the scientists to share biological materials they went out into the community and started their own brain banks and gene banks so more people could get into the field.
We are not asking you to tell the NIH how to do the science, what to fund and what not. We’re asking you to create a policy that says do some science for God’s sake. Take advantage of what is known and use it. That is why we are asking for centers.
Parents with autistic children don’t know where to get services, they often don’t get even a proper diagnosis. Researchers can’t get access to families and that slows down progress. This bill creates sites where families can come for diagnosis and clinical care and where the very best scientists can get access to those families. It creates a structure that encourages, no actually mandates, scientists to work collaboratively, sharing information and treatment protocols.
This is basically the same model that worked in childhood leukemia. As new treatments were discovered they were tested and validated and refined across collaborative sites. The result, the survival rate for pediatric leukemia has gone from 20 percent to 80 percent. This same center based approach has helped scientists make major discoveries in Alzheimer’s and new treatments are clearly on the horizon.
It’s not only the centers, but it is the money, and let me explain why this may be a special case. In other diseases, breast cancer, prostate cancer, Parkinson’s, eventually, sooner rather than later, you die. If you have any money, you leave some to fund research.
But autism affects children. They don’t lobby, they have no voice, they don’t raise any money. And their parents are to busy taking care of a very ill child to do much of anything else. When the parents die, if there is any money in the family, it goes towards taking care of the adult children so they don’t become wards of the state. The pot never gets any bigger.
Recently, as the numbers have increased, as famous people like Dan Marino and Doug Flutie and Senator Slade Gorton have come forward to talk about their kids and their grandkids, the autism community has mobilized. They have aggressively recruited scientists, raised money, started resources and fellowships. They feel that the potential to make a breakthrough is here. Despite financial strain and limited time and endless heartbreak, they have done more than their part.
Now they are asking you to do yours. I know that every parent’s pain is deep and that suffering is not a competitive sport to be ranked and rated, but in autism the neglect has been so severe and the potential for progress is so great, that to do nothing would be tragic.
I know one little boy with autism pretty well. He likes to jump on the trampoline, and play in the sand and sometimes he runs up to you and gives you a hug. But other times, when he is crying late at night, he can’t tell his parents if he had a bad dream, a tummy ache or if he’s sad because his little two year old brother can talk and he can’t — even though he’s seven. But when I look into his sparky brown eyes, I know that they are in there, and that he is in there, and that he’s counting on us to help him get out.
Please pass Senator Gorton’s bill, the Advancement in Pediatric Autism Research Act, out of this committee and send it on to the Senate floor this year. It will make a real difference in the lives of countless American children and their families forevermore.
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.