In the past two decades celebrities, some knowingly and many unknowingly, have consistently spoken over Autistics to support Cure Autism Now, Autism Speaks, and their cohorts in the name of ’autism awareness’ or to ’save a generation of children’ from being Autistic.
Some of these celebrities have testified to our senators, rather than actual Autistics testifying to senators, to support autism legislation that still affects American autistics today. An early example of this can be seen with the Children’s Health Act of 2000 that was lobbied by Cure Autism Now, their community of parents, and then super-charged by celebrities like Anthony Edwards, Rene Russo and Bradley Whitford.
Jon Shestack founded Cure Autism Now in 1995 with his wife, Portia Iversen, after their son was diagnosed with autism . This couple wasn’t like most parents with an Autistic child. These parents were very privileged and well known in Hollywood. Shestack was a movie producer of many popular films including ”Air Force One” with Harrison Ford. His creative talents and access to celebrities proved to be an incredible super power for the autism organization.
Soon CAN dominated the narrative about autism and it wasn’t just Autistics that noticed. Other autism organizations noticed too and referred to CAN as a ‘yuppie’ organization. The star power and control over the autism narrative only amplified when Cure Autism Now merged with Autism Speaks in 2007. Back in 2000, CAN credited parents of an Autistic as the key to getting the Children’s Health Act of 2000 signed and enacted by Bill Clinton.
“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.“CAN Press Release: October 17, 2000
Cure Autism Now also gives kudos to their celebrity influencers as being their winning edge. When CAN refers to the autism community, they are speaking about non-Autistic parents and professionals in their self-created ”autism community” — this excludes the majority of Autistics. Autistics belong to the Autistic Community. These are two very different communities – and when the autism community is included, the Autistic Community is excluded. This pattern applies to legislation that affects us as well.
“If the autism community had any edge other than the rightness of their cause it was access to celebrities.
Rene Russo made national headlines with her visit to Washington and testimony in front of the commerce committee in the House.
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.”CAN Press Release: October 17, 2000
The Children’s Health Act established the Centers of Excellence in Autism, autism epidemiology with the Centers of Disease Control and Prevention (CDC) and the Interagency Autism Coordinating Committee (IACC).
The Centers of Excellence focused on autism research, and the CDC would conduct a national study to get a more accurate count of the Autistic population. Then there was the creation of the IACC. This group of folks would coordinate federal efforts, and advise the Secretary of Human and Health Services on autism. The membership of this committee would be comprised of directors from national research institutes, the CDC and other agencies as the Secretary determined appropriate.
Additional members, could be appointed to the committee as well. This included representatives of other governmental agencies that serve autistic children, like the Department of Education, and it also included “the parents or legal guardians of individuals with autism or other pervasive developmental disorders.”
Not mentioned anywhere in the legislation is Autistic representation. The language of this legislation includes government entities, autism organizations, professionals and parents of Autistics. Nowhere to be seen are Autistics or the Autistic community. It’s like we don’t exist. The ’autism community was included, and we Autistics were excluded.
Once the members of this committee were appointed, they’d serve a term of three years, and could serve an unlimited number of terms if reappointed. The committee was to meet no less than twice a year. The Secretary would prepare a yearly report concerning the implementation of of the amendment and submit it to Congress starting January of 2001.
This pattern of exclusion can be seen repeatedly over the past couple of decades: Parents of Autistics are included, and Autistics that can’t be used as a token or prop, are excluded. All the while, celebrities were courted by the parent founders of autism organizations, and invited to speak in public service announcements, marketing promos, TV shows, radio and online interviews, and celebrities were even asked to testify to legislators in regards to autism legislation. These celebrities were included in a meaningful manner. Autistics were not.
These parents of Autistics leveraged their privilege and power to have the loudest voice on autism in the nation. Autistics be damned. Historically, this pattern has been stuck on repeat and Autism Speaks and their cohorts have kept a monopoly of power on all things affecting Autistics, our personhood, our healthcare and supports. It’s only been very recently that the IACC has made changes to their membership to include Autistic advocates that weren’t affiliated with a parent-founded organization. These changes are due to the activism of Autistics.
All the while Autistics were excluded, celebrities were invited. They were invited to speak about autism on public service announcements, on TV talk shows, to the media, and even invited to sit on these founding parents’ autism organization boards.
The argument of ’they didn’t know Autistic adults existed’ is absurd. The founders of Cure Autism Now, Autism Speaks and the others were very aware Autistic adults existed and protesting their activism in our name. The frustration of being ignored, minimized and dehumanized was already in place back in 2000. Autistics didn’t want to be cured, we didn’t want our healthcare in the hands of movie moguls and Jon Shestack knew it.
Autistic activists had been communicating with CAN to no avail. In protest, Autistic activists created a parody site of Cure Autism Now and titled it “Cure All Neurotypicals Now,” with the acronym spelling out CAN’T.
The group’s use of the word “cure” has riled some people in the autism community, including some people diagnosed with high-functioning autism who feel they should be accepted, not “cured.”Jon Shestack, co-founder of Cure Autism Now
Autistics weren’t the only ones to note the incredible and massive amount of privilege these parents and founders of Cure Autism Now wielded. CAN used their Hollywood access, movie-magic skills to capture and then control the narrative around autism from almost everyone.
“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.”October 17, 2000
I would suggest to Mr. Edwards that us Autistics have a voice, we’ve been using it for years, and you refused to hear it. When you testified in 2000, you were using your voice to replace our voice, rather than to speak for us. Over decades, Autistic voices have been stolen, co-opted, and ignored, and silenced. Perhaps now you can try to understand that Autism and the Autistic community is not what you thought.
Celebrities have been weaponized against Autistics for over 20 years now. After the Children’s Act of 2000, came the Combating Autism Act of 2006, and then state-by-state legislation for autism insurance reform followed.
Autism Speaks merged with Cure Autism Now in 2007. The organization also merged with other leading autism organizations at the time like the National Alliance for Autism Research (NAAR) and Autism Coalition for Research & Education (ACRE). Autism Speaks monopoly on everything related to autism happened at an incredible and shocking pace.
Listen Up Non-Autistic Celebrity Advocates: The Time Is Now To Stop Speaking Over Us. If you truly want to help Autistics, then the time is now to actually listen to the majority stakeholders in this fight: Autistic people.
Celebrities, movie producers, actors, singers, musicians, and NBC media moguls have had more influence on legislation about Autistic healthcare than all Autistics in America combined. Right now, in 2022, we are still being treated like the enemy. Parents of Autistics who don’t parrot Autism Speaks propaganda and agenda are treated like the enemy as well.
The good news is Autistics have networked together worldwide and are fighting the monopoly Autism Speaks has on all of our lives. Autistics have been in a civil rights movement for over 30 years. We’re finally breaking into mainstream media and getting our fight for human, civil and disabled rights heard in general society. It took generations of Autistic activists, with our real allies, this long to get heard.
And we are heard – perhaps not in the small black and white print, but the pattern changes of Autism Speaks have altered. Slightly. They and their cohorts are now paying lip service to autism inclusion, and have found Autistics who will parrot their party line and push their agenda, rather than fight for real and comprehensive Autistic healthcare for all Autistics. The spotlight on these autistics are powered and funded by these parent-focused autism organizations.
Autistic activists in the Autistic community are then chastised by parents in the ‘autism community’ that not ’all Autistics’ believe as we do, and will point to one of these organizations’ ambassadors as ’proof.’ So this cycle continues on as it has now for decades, and Autistics are still suffering being minimized, dehumanized and villified by the very organizations that purport to support us.
Why has this been such a fight? These parent-founded autism organizations, and the founders, don’t want to lose control over the narrative — because if they do they lose the power and influence they’ve had with legislation, NIH budget, politicians, resource centers, public education and more. Not only that, the truth about Applied Behavioral Analysis (ABA) would become public knowledge and the commodification of Autistics through conversion therapy would be banned.
To any of the celebrities listed below:
Are any of you ready to do better? Are you ready to find out how to really help Autistics and our community?
Are you ready to really listen to Autistics, and then support us where we need it?
While non-Autistics in the ‘autism community’ congratulate each other and give each other ’autism hero’ awards on a job well done …
Autistics are traumatized. Our communities have been pillaged of money to go for a ’cure’ instead of establishing legitimate and actual Autistic healthcare for our lifespans. Autism researchers have circumvented Autistic adults and focused on Autistic children. The majority of the parents who submit their children’s information for research belong to the ’autism community.’
This pattern has allowed for these organizations to bypass Autistic adults completely, and get their hands on what they want the most: Autistic DNA, brains and tissue for research. The goal in 2000 was to prevent and cure autism. Today’s language has been updated from ’cure’ to ’autism solutions.’ Regardless of what these orgs are calling it now, it’s still not comphrensive Autistic healthcare for our lifespans.
Adding insult to injury, the massive budget Autism Speaks had for marketing and lobbying for autism insurance reform was generated in great part by the donations they received from non-Autistics wanting to find a cure for autism.
“Thanks to his Hollywood connections, Shestack was able to enlist A-list celebrities to lobby Capitol Hill for autism funding. They included Buffalo Bills quarterback Doug Flutie, who has a son with autism; ER star Anthony Edwards; and, to the delight of giddy members of Congress and Hill staffers, actress Rene Russo.
The Children’s Health Act of 2000 ”sends an incredibly powerful message out to the scientific community that this is a national priority. If you are a scientist, you will be able to make a living doing research on autism,” Shestack says.
Sen. Slade Gorton, R-Wash., another of the bill’s sponsors, says the law means that ”we are one step closer to finding a cure for autism.”Via USA Today on November 1, 2000
I dream of a day where Autistic healthcare isn’t synonymous with parent-founded autism organizations, ABA, finding a cure, diagnosis via a deficit model, and marketed with some form of burden, fear and tragedy narrative. I will advocate my entire life for Autistics to be included in a meaningful manner in all things that affect and pertain to us.
So celebrities, if you realize autism isn’t what you thought and would like to learn more about Autistics and the Autistic community, our history, our civil rights movement and the harm that these organizations have caused us – holla.
On social media search #ActuallyAutistic and you’ll find us. If you have a question for an Autistic, use the hashtag #AskAnAutistic on Twitter and an Autistic will respond. It’s that easy now to find us, and it’s my sincere hope that you do.
Founder of InternationalBadassActivists.org
Autistic vintage ’72
Parenting Autistics since ’93
Celebrities In The Autism Speaks Influence Network That Silenced Autistic People
The names below are linked to their archives on this site. This is not a complete list.
Elizabeth J. Carlisle
Crosby, Stills and Nash
Five For Fighting
Michael J. Fox
Vivica A. Fox
Triumph, the Insult Comic Dog
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.