[Note: This article is for archive purposes in Autistic History. It’s to illustrate the the voices heard during this era. It’s to show how the Wrights, co-founders of Autism Speaks, and pals used their privilege purposefully to drown out the voices of the Autistic community and others.]
Parents push for autism cure
Doctors credit parents for making research a priority
By Robert Bazell
Updated: 1:20 p.m. ET Feb. 23, 2005
“I just remember sitting by his crib and just crying and crying,” says Portia. “He was slipping away, every minute.”
Like all parents, they wanted to know what to do.
“So, we said, ‘OK. What’s there in medicine?’ There wasn’t anything in medicine,” recalls Jon. “And then we said, ‘Well, they must be doing research.’ But there was no ‘They.’ There just wasn’t.”
Autism had long been neglected. So Portia, an accomplished set designer, and Jon, a successful movie producer, formed a parents’ organization called Cure Autism Now.
When NBC News first visited them in 1999, they were lobbying Congress for money and attention. But more important, Jon and Portia were learning the scientific details so parents could push the research.
Today the organization can share credit for a new blood bank where researchers look for genes that might cause autism. Scientists say the group has brought increasing focus to autism in many labs.
“It has directly changed the scene of autism research in the United States,” says Dr. Michael Merzenich at the University California, San Francisco.
How does it feel for Jon and Portia to know they can move science and politics like that?
“People told us in the beginning you can’t hurry science,” laughs Portia. “Well, you can. You really can. You can treat it like a low-budget movie and make it go fast. And that’s what we’ve done.”
But of course it is never fast enough. Dov, now 13, remains profoundly affected. And while autism is getting more attention, it still receives far less money than any disorder that affects as many people.
So is Cure Autism Now an ambitious name for their organization?
“It will always be [a] real good idea until it is done,” says Jon. “And then when it’s done, we’ll be happy to retire the name.”
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.