Image description: A square image with a white background and blue arrow going up with a circle image of the American flag and the headline, ”The Autism Cabal & The Rise Of Parent-Founded Autism Organizations In The United States” by Eve Reiland.
[Content Warning: Eugenics, filicide, suicide, murder, oppression, legislation without representation, ableism, autism propaganda, Autistic Conversion Therapy and more.]
On InternationalBadassActivists.org the Autism Cabal refers to a group of privileged non-Autistic parents, philanthropists and US government officials that met and began to network together in the early 2000s.
The goal for these parents was to become the loudest voice heard on autism in the nation, influence the direction of autism research worldwide, and lobby legislation to get their ’autism solutions’ legitimized and funded – and that’s exactly what they did.
Today, this Autism Cabal’s non-profit organizations are well known worldwide. They’ve infiltrated and integrated themselves into Autistic people’s lives in every sector, private and public. Their work is in our government, schools, churches, employment programs, health care, in our homes, on billboards, on commercials, even breakfast cereal has had their message printed on the box. These parent advocates’ brand of ‘autism advocacy’ is quoted and promoted by doctors, teachers, ’autism experts’, politicians and celebrities alike. Their monopoly on autism is so great, most of what the world knows about autism was derived from one of these parent-founded organizations or their affiliated networks.
Since the rise of parent-founded autism organizations in the United States began, these families have dominated the autism narrative and legitimized their controversial autism therapy with vulnerable parents of Autistics. These orgs complained about the steep cost of autism treatment. The $60,000 a year for autism therapy was bankrupting families, and insurance companies were denying them coverage. These non-profits touted the ’stress of autism’ was destroying marriages and causing filicide at high rates. They marketed one of these therapies, Applied Behavioral Analysis (ABA), as the great Autistic Hope. This therapy was created by one of the co-founders of the oldest parent-founded autism non-profit organization in the United States: Ivar Lovaas from Autism Society of America.
The expensive therapy caused parents a financial hardship and the cost was bankrupting them. These organizations were going to change that, and lobbied on behalf of these parents to get legislation passed to force Medicaid and private insurances to cover it. They touted ABA as an Autistic child’s civil right and it should be integrated into their public school education as well. While over in the Autistic community, Autistic activists were fighting the inclusion of ABA to ’recover’ and ’normalize’ us.
In the Autistic community, ABA is known as Autistic Conversion Therapy. It is autistic abuse, and one of the reasons why these parent-founded autism organizations leveraged their privilege to drown out Autistic voices. They used their power to silence Autistics from being heard in the public conversation, and to keep us from having representation in legislation about us and our healthcare.
Getting the Combating Autism Act of 2006 signed was one of the first giant successes for the Autism Cabal. Though swiftly after in 2007, the Autism Treatment and Research Hearing declined to fund the $40-million-a-year ask for Complementary and Alternative Health autism treatment studies, but it did force Medicaid to cover ABA. Later military families would have this treatment covered too.
The decision to not fund vaccine-autism-junk-science research severely divided these organizations again. At this point, the Autism Wars erupted into national headlines and media stories. The fight between the groups became known in mainstream society. Hell, the fight publicly divided one of the most famous ’autism families’ of all: the Wrights, founding family of Autism Speaks. While most of the world became aware of these two fronts in the Autism Wars – there was a third front of activists battling to be heard. This front was held by Autistics, and ours was and is a fight for human, civil and disabled rights.
Autistics have advocated to be placed in positions of leadership, or in other meaningful positions, in all matters that pertain to us since before the launch of many of these parent-founded organizations. Sadly, the voice of the Autistic community doesn’t harmonize with the agenda of these autism non-profits. Instead of including Autistics, these parents created their own ’autism community’ and bypassed Autistic adults completely. Not only that, these parents and grandparents utilized their privilege and power to silence the Autistics they couldn’t use as a prop or as a self-narrating zoo exhibit.
After achieving success in federal legislation, these parent-founded groups lobbied legislation state-by-state (check out AutismVotes.org and the Autism Treatment Acceleration Act) and forced insurance companies to cover ABA. To the world at large, these organizations made it seem as if Autistic adults didn’t exist. When we did exist, we were incredibly rare and to be pitied. Either way Autistic activists didn’t fit in with their goals and agendas for us – and these folks couldn’t afford for us to be heard. We’d disrupt their plans, interfere with where research dollars were allocated, and disrupt their return on investment in the future Autism Market.
Today, due to ABA, the Autism Market is booming by the billions and there’s no cap in sight. ABA is so profitable that ABA service providers are now touting it’s great for more than just Autistics, but all folks with a developmental disability would benefit. These ABA companies are expanding their client pool to include seniors, homeless people, the mentally ill, folks battling addiction, and even into the workplace. The push for legislation to force insurances to cover this for non-Autistic people has already started. At this point, ABA is so glamorized to the general public by these organizations, I wouldn’t be surprised if they’ve made claims they can end bigotry, racism, classism and any and every other social ailment plaguing humankind. (Well, everything but homophobia perhaps?)
So, how did we get here? Oh yes, the Autism Cabal. … Going back to 2003, this group of folks that formed the Autism Cabal first met at the Human Genome Project Gala, an event to celebrate the project’s completion. This meeting was described in a 2006 Town & Country Magazine article titled: Autism’s Angels.
At the gala, Tom Insel of the National Institutes of Mental Health (NIMH) connected with Bob and Suzanne Wright, Harry and Laura Slatkin, and Jim and Marilyn Simons. Together they shared their personal connections to autism, and then collaborated on how to get attention and funds directed to the growing epidemic. After the 2003 meet and greet, the Wrights, Slatkins and Simons worked to launch their own national autism organizations, or expand existing ones, and network together on shared autism initiatives.
After the Wrights launched Autism Speaks in 2005, they acquired and merged with the Autism Coalition For Research and Education (ACRE), the National Alliance for Autism Research (NAAR), and Cure Autism Now (CAN). These mergers also included adding the founders of these acquired organizations to the Autism Speaks board. Autism Speaks also pulled their projects and initiatives under the their umbrella as well.
The Slatkins founded New York Center For Autism (NYCA) in 2003 – though the organization is now known as NEXT for Autism. In 2005, Laura Slatkin also co-founded the NYC Autism Charter School with another parent of an Autistic, Ilene Lainer. The NYC Autism Charter School staff are trained in the principles of Applied Behavior Analysis (ABA), which serves as the basis for its educational program. The NYC Autism Charter school opened a second location in 2017.
The Simons had already founded the Simons Foundation in 1994, and launched the Simons Foundation Autism Research Initiative (SFARI) in 2003. To help increase diversity and fight inequity in autism research, they also offer a Supplement to Enhance Equity and Diversity (SEED) Award. To bring new researchers in the field, lower barriers of entry and drive research, SFARI has created and maintains several resources for autism scientists including autism cohorts: Spark, Simons Searchlight, and the Simons Simplex Collection, animal and cell models of autism, and the editorially independent magazine, Spectrum.
In the Town & Country article, Laura Slatkin talks about the Human Genome Project gathering: “Tom (Insel) looked around he room, which was full of these brilliant, brilliant scientists. He told us, ‘If you can get the greatest scientists in the world to focus on autism, you’ll get where you need to be much faster.’ We were very excited; it gave us a direction and a sense of how we could help.”
The same article included the founders of UC Mind Institute, Chuck and Sarah Gardner, parents of an Autistic. They launched their organization in 1998. It also included the Kennedy Krieger Institute, founded in 1937 by parents of Autistic, Drs. Paul Law and Kiely Law. Autism Society of America and author Karen Siff Exkorn, Bernie Marcus of Home Depot, and the documentary Autism: The Hidden Epidemic are also included in the article.
These autism organizations then networked with each other, lobbied for legislation on federal and state levels, rallied non-Autistic parents to become ’autism warriors’ and pressure elected officials to pass legislation that would dramatically increase funding for autism research, and force health insurance companies to cover the cost of ABA. These parent-founded autism organizations also launched the AutismVotes.org site to consolidate and coordinate their efforts nationwide.
The parent-founded organizations that excluded Autistic representation in legislation in the mid-late 2000s are listed here with a few more that have been launched since then:
Autism One, Autism Science Foundation, Autism Speaks, Autism Society of America, COSAC, Cure Autism Now, Dan Marino Foundation, Doug Flutie Jr Foundation, First Signs, Generation Rescue, HollyRod Foundation, Kennedy Krieger Institute, Marcus Autism Center, National Autism Association, National Alliance for Autism Research, National Council for Severe Autism, NEXT for Autism, Organization for Autism Research, S.A.F.E. Inc, SafeMinds, Simons Foundation, SFARI, SARRC, Spark for Autism, TACA, UC Mind Institute, and Unlocking Autism.
By Eve Reiland, founder of InternationalBadassActivists.org and a co-founder of The Autistic Cooperative
Organizations that lobbied for ABA coverage to be mandated via the Combating Autism Act and later with State-By-State Legislation.
To be very clear: None of these organizations are Autistic allies. None of them.
AutismOne – parent founded
Autism Society of America – parent founded
Autism Speaks – Grandparent founded
COSAC – parent founded
Cure Autism Now – parent founded
Dan Marino Foundation – parent founded
Doug Flutie Jr. Foundation – parent founded
First Signs – parent founded
Generation Rescue – parent founded
National Autism Association – parent founded
Organization for Autism Research – parent founded
S.A.F.E. Inc. – parent founded
SafeMinds – parent founded
Southwest Autism Research & Resource Center (SARRC) – parent founded
Talk About Curing Autism (TACA) – parent founded
TalkAutism – parent founded
Unlocking Autism – parent founded
“The unanimous passage of the Combating Autism Act by both houses of Congress can be an historic turning point. Now the burden falls on you, on this subcommittee, to turn Congress’ promise on autism into reality.”– Bradley Whitford, volunteer for Autism Speaks and speaker at the 2007 Autism Treatment & Research Hearing
“The Combating Autism Act represents a critical and hard-fought victory for the autism community, and yet much of the toughest work is still to come during next year’s appropriations process,” said Bob Wright, co-founder of Autism Speaks and Chairman and CEO of NBC Universal. “We must continue to be collaborative and relentless in our efforts to ensure that this historic commitment is fulfilled.”
“The campaign to enact the Combating Autism Act worked because it was bipartisan in the truest sense of the word, as our political leaders put the interests of individuals and families impacted by autism above all else.”– Jon Shestack, co-founder of Cure Autism Now.
“The passage of this landmark single-disease legislation signals the federal government’s declaration of war on the epidemic of autism,” said Jon Shestack, co-founder of Cure Autism Nowand Bob Wright, co-founder of Autism Speaks and chairman and CEO of NBC Universal in a joint statement.
“ Seeing this bill become law will be the next best thing to finding a cure.”
More With The Combating Autism Act
Autism Speaks Network