Podcast Episode 5: Autistic Conversion Therapy & Legislation Without Representation
[Not An Exact Transcript]
In this episode:
Judge Rotenberg Center (JRC) in the news.
- News Stories
- JRC History with Lydia X. Z. Brown
- ASAN Statment
- Autistic Women & Non-Binary Network (AWN) Statement
- Call-To-Action and walk-through on AutisticSciencePerson.com
Some Autistic Culture and Langauge …
Talking Autistic Community & Autism Community, plus Autistic Advocacy and Autism Advocacy.
Parent-led Autism Revolution
WTF is that? Here’s a hint: Autistic Conversion Therapy movement.
Parent-founded Organization: Autism Society of America
Problematic Org Series will take a look at the organizations that were involved in lobbying for the Combating Autism Act and ATAA. In this episode we’re going to take a closer look at the Autism Society of America and spotlight some shocking facts.
Audio of news interviews with Bob & Suzanne Wright, Don Imus, Senator Rick Santorum in regards to the Combating Autism Act in 2007.
Music by Bill Reiland
Some Autistic Culture and language …
Let’s talk about some terms and definitions commonly used in the Autistic community.
First up, I’m often asked what’s the difference between the Autistic Community & Autism Community and what’s the difference between Autistic Advocacy & Autism Advocacy.
The first question was an easy answer for me. The second took me some time to figure out.
The “Autistic Community” is not the same as the “Autism Community.”
The Autistic Community is comprised of mostly Autistic people of all ages worldwide. This community includes real allies as well. This community has a vastly different culture the non-Autistic parent-led ‘autism community.’
The Autism Community was created by these organizations and includes mostly parents, grandparents, their friends and a variety of professionals – and for many of these organizations, it also includes a lot of quackery and myth too. Most of what the world knows today about autism is derived from the mostly non-Autistic “Autism Community.”
When organizations like Autism Speaks state ‘everyone in the autism community’ agrees, or something similar, the community they are referring to is the “autism community.” This does not include the majority of Autistic people. They knowingly excluded the Autistic Community and behave as if we did’t exist to the public and media for years. For the most part, they still don’t.
So what’s the difference between Autistic Advocacy and Autism Advocacy?
Billions of dollars of difference to start.
Autistic advocacy is focused on Autistic and disability rights, Autistic dignity, civil rights with things like representation in legislation. It’s also to be included in a meaningful manner in all matters that pertain to us, and to stop the harm happening via many of these autism treatments that generate billions of revenue for many each year, especiallly with Applied Behavioral Analysis ABA.
Autism Advocacy revolves around parents and their agendas for Autistics. It includes ABA ‘recovery’ or antivaxxer quackery. It also includes finding a way to prevent autism and to find a cure for autism. The ‘cure’ for autism is the same ‘cure’ society has for Down Syndrome: a prenatal test and an abortion.
Many autism advocates are attached to certain autism organizations. These organizations are backed by people who have a lot of power and a lot of money.
Most Autistic activists aren’t paid for their labor in the movement. We do this to create a better future for all Autistics born today. And for activists like me, a better future for all autistics for them is the only payment expected, and it’s my hope I’ll see that brighter future come to fruition in my lifetime.
Is The Parent-Led “Autism Revolution” For Real? Since When Did “Autism Advocacy” (Not The Same As Autistic Advocacy) Not Have Complete Influence On Legislation For Autistics In The United States?
I’m not sure where I first saw the term “parent-led autism revolution” this past couple of days, maybe weeks now … but it’s stuck like a burr in my ass … because since when are parents and parent-led organizations not been the loudest voice on autism always? How exactly are they so oppressed by Autistics that they need to formerly start a revolution against our civil and disability rights movement?
Let’s go back a bit and look at some basics of Autistic History here ….
The first thing to understand is the non-Autistic parent-led autism revolution is 100% ABA driven, and today it makes up the majority share of the $2 billion a year Autism Treatment Market. A market that’s still booming.
Remember the mid-2000s? Yesterday’s Autism Prevalence numbers, the ones used to scare the public about an impending Autism Epidemic the world just couldn’t afford, are used today to forecast revenue from the booming Autism Treatment Market. Autism Speaks is touted as one of the largest players in that field. ( Self-serving epidemic much?)
It was also non-Autistic parent-led organizations that lobbied for the Combating Autism Act that included Medicaid coverage of ABA (which passed in 2006), and then again with state-by-state legislation to force private insurance companies to cover the cost of this ‘medically necessary’ and ‘evidence-based’ autism therapy also known as Autistic Conversion Therapy. (This is also Gay Conversion Therapy by behaviorist pioneer Ivar Lovaas.) These parent-led organizations also lobbied the Autism Treatment Acceleration Act (ATAA) and rallied together through the AutismVotes.org site.
They did this all while referring to their ‘autism community’, purposefully erasing Autistic voices so they could be the loudest voice on autism instead. This was done because Autistics do not condone the use of conversion therapy to make us ‘less Autistic’ and pass as more ‘typical’ by kindergarten. We also know it’s bullshit. Just look at the evidence.
Yeah, This is what blows my mind. The evidence-based studies touted actually show that ABA doesn’t work. These organizations lobbied this ‘autism treatment’ with a known 50 – 95% fail rate. That was the evidence presented, and even that can’t be replicated in repeated studies. The success rate of that study has never, ever been replicated.
This is the evidence.
This evidence shows a massive failure rate so how the hell did anyone think this was ‘medically necessary?’
Marketing propaganda, tragedy narrative, fear narrative, violence narrative, martyr narrative and so on is how. Apparently on the legislation floor it didn’t matter what the ‘evidence’ stated as their success … they just pushed it right through. Also note, these organizations NEVER mentioned the real Autistic Community and our fight to be heard over them. They behaved as if we didn’t exist.
These parent-led organizations presented their self-created ‘autism community’ to the world and referred to it in their work. They erased the “Autistic Community” in their marketing, press releases and, worse, prevented Autistics from being at the table in a meaningful manner in any legislation or initiatives about us, our lives, our medical care and more.
When you read about the Autism Wars, they always speak to two fronts. There’s the antivaxxer & pseudoscience movement, and there’s the genetics/cure/aba movement. What’s not often mentioned about the Autism Wars is the third front. The one that includes the majority of Autistic people.
The media’s idea of fair and balanced reporting on the vaccine-autism link was ridiculous. First of all, they only ever spoke to non-Autistic people about it – and some reporters falsely entertained pseudoscience and quackery as real and caused incredible harm for Autistic people and our community worldwide. A harm we are still battling to stop today. Autistic inclusion to these organizations means using us as a token or a prop. And they only like us as long as we parrot their agenda.
Autistics that don’t subscribe to parent-led agendas for us? Well, that’s when these organizations army build their ‘warrior moms’ or parents and actively battle us for demanding basic human and civil rights. They battle us on our fight for disability rights. They’ve gone so far as to attempt to sue some Autistics for their activism and interfere with our rights to free speech and self-advocacy.
These organizations promoted ‘early intervention’ with ABA as ‘early as possible’ to be the great savior of Autistic children from being … well, Autistic. (Recovered is their term). There’s no science behind that – that was a wish and a prayer – and bullshit. This early intervention was the promise for a better future for Autistics. There was no study or evidence that ever proved early intervention worked better than the original study.
These parent-led organizations lobbied hard and knowingly over the voices of Autistic people. They silenced us harshly, dehumanized, belittled, and the usual nonsense and ugliness we’re used to now. This is not a new phenomenon for Autistics.
No, since before the “Snore Wars” (and the launch of Autism Network International) we’ve been silenced and battled by parents of Autistics who want the power of our voice as theirs, and so far they have been able to co-opt our voices in the media, public and representation in legislation.
Many of these organization’s founding parents and grandparents are incredibly wealthy, powerful and have networks available to them Autistics simply can’t participate in or compete with. These folks are also media conglomerates, hedge fund managers, philanthropists, celebrities, sports stars, fashion designers, authors, specialized schools, bankers, lawyers, and more. There isn’t an industry or sector untouched by these organizations’ advocacy goals.
These parent-led organizations were also involved with getting the Combating Autism Act passed (which made Medicaid cover ABA), and then later they lobbied state-by-state legislation with the Autism Treatment Acceleration Act (ATAA), forcing private insurance companies to cover the steep cost of ABA.
Not only are the majority of Autistic activists excluded from these organizations – so are the majority of Autistic parents of Autistics. These organizations treat us horribly when we advocate for a better future for our Autistic children and grandchildren. A future that doesn’t include ABA and eugenics. We are just as belittled, mocked and chided for our activism regardless of our lived experience and our parenting experience.
The arguments against us are ridiculous, and our Autistic culture is consistently berated as meaningless, laughable and unworthy of recognition, compassion or support. To compound matters more, much of the stigma we Autistics suffer today is backlash to the non-Autistic ‘autism community’ culture created by non-autistic “autism parents” and their fellow advocates and antics.
So the whole parent-led autism revolution is like … what? Non-Autistic Parent-led organizations have dominated the entire narrative on autism since … always.
Here take a look at the organizations that lobbied for ABA coverage to be mandated via the Combating Autism Act. 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
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
These organizations are problematic for far more than their lack of Autistic inclusion. Many of these organizations are a front for the pseudoscience movement and are notorious for their harmful and toxic autism ‘cures.’ (Chelation, Miracle Mineral Solution, Powdered Parrot Head, and more). These organizations continue to worship Andrew Wakefield and Robert Kennedy Jr and promote their propaganda online and host giant national autism conferences each year.
This parent-led autism movement is bullshit. Why? Because, Autistic parents of Autistics like me exist. And like me, most of us are calling BULLSHIT on these organizations and have done so for decades. We’re excluded from this ‘parent-led’ movement.
Guess what, non-Autistic parents of Autistics don’t get to own an entire ‘parent’ movement to themselves. So how about just calling the movement what it is – The Autistic Conversion Therapy movement. And since you can’t recognize your own bullshit, I’ll accept The ABA Movement.
But a parent-led movement that includes ABA and doesn’t include Autistic parents of Autistics like me? No, that’s not a ‘parent’ movement. You don’t get to erase parents like us anymore. Not in 2021. Besides, who do you think raised this generation of self-advocates, or mentored them, or helped them learn their history? Autistic parents. Oh, and Autistic Elders too. We all really fucking exist out here.
Just to be clear:
I’m a parent.
I’m a parent of Autistics.
I’m an Autistic parent of Autistics.
I will someday be an Autistic grandma of Autistics too.
My activism is both self-advocacy and parent-led. Neurotypicals aren’t the only parents of Autistics. You don’t get to claim an entire ‘parent’ movement to just yourselves. Nope. You’re not erasing our Autistic existence, again. And you’re not excluding us from ‘parenthood’ over our fight to make ABA illegal in every state in the nation.
Oh, and there many non-Autistic parents of Autistics that our incredible allies to our community. More everyday. So, understand this, you don’t own the parenthood narrative – and what privilege you must have to possibly think that you did.
So how about now you just so how about you call yourselves what you areally are? The Autistic Conversion Therapy Movement.
It’s your advocacy. Own it.
Problematic Org: ASA
Autism Society of America Origins
The Autism Society of America was founded in 1965 by a parent of an Autistic, and research psychologist, Bernard Rimland with Ivar Lovaas, the founder and pioneer of Conversion Therapy. Conversion therapy is more commonly known as Applied Behavioral Analysis or ABA in many non-Autistic communities. Lovaas’ work is also responsible for Gay Conversion Therapy.
Bernard Rimland is noted for his work in dismantling the myth that Autistics were born from “Refrigerator Mothers.” The term came into existence in the 50s and stigmatized parents of Autistics, and parents of children with Schizophrenia. In 1949, psychiatrist Leo Kanner concluded that these children lacked a ‘maternal warmth’ and thus became Autistic or developed schizophrenia. This stigmatized parents greatly. Fortunately, Rimland discredited that theory in the 1970s and broke the ‘cold mother’ scorn these parents suffered.
Unfortunately, that’s where the good ends for Autistics with this researcher. Rimland promoted theories on autism, the cause and the cure, that have since been discredited. He founded the Autism Research Institute (ARI) and introduced Defeat Autism Now! (DAN!) doctors to the world. These doctors followed Rimland’s belief there was a link between childhood vaccinations and autism. The ‘autism treatments’ offered were sheer quackery. Some of the more well-known ‘alternative’ remedies to ‘heal and recover’ an Autistic child included chelation, bleach marketed as Miracle Mineral Solution, and hyperbaric oxygen therapy.
Worse, DAN! doctors created their own autism assessment test called Autism Treatment Evaluation Checklist. Parents often refer to it as ATEC. This evaluation allowed them to ‘diagnose’ autistic children, offer ‘treatments’ to reduce the ‘vaccine harm’ and recover their child to neurotypical.
After these DAN! doctors diagnosed children as being Autistic – they helped these parents ‘recover’ their children from “vaccine injury.” Once these doctors felt the children were ‘recovered’ these children would then lose their autism diagnosis and be “cured.” Most of these children were never fully recovered because … well that would be detrimental to DAN! doctors bank accounts.
Celebrities like Jenny McCarthy touted DAN! and their harmful remedies heavily. They promoted Andrew Wakefield’s fradulent vaccine study, and then invented the big pharma shakedown via vaccines. It’s these types of treatments and doctors that McCarthy said cured her son from being Autistic.
These ‘autism treatments’ are incredibly expensive and aren’t covered by health insurance (no surprise here). After the passage of the Combating Autism Act in 2006, and further state-by-state legislation, they still aren’t. Sadly, many parents went broke trying to fund these pseudoscience treatments in the hope of curing their Autistic child from autism. Many of these treatments have seriously harmed and killed Autistic children and vulnerable adults worldwide. By 2009 it’s estimated that 3/4 of diagnosed Autistic children have been treated by an alternative treatment like the ones promoted by DAN!
Today Autistics and our real allies are still fighting the harm of this movement and people. Most recently you’ll have seen news stories about folks here in the United States facing prosecution for their sales of Miracle Mineral Solution. This was due to the work of Autistic and ally activists worldwide.
The DAN! Protocol was was established in 1995. DAN was shut down in 2011. Though another group has formed and replaced it called Medical Academy of Pediatric Special Needs (MAPS). These doctors are under the guidance of Daniel Rossignol, and many autism organizations refer parents to them daily.
The autism organizations involved with lobbying for autism-related legislation via the Combating Autism Act that were part of the anti-vaxxer movement::
Ivar Lovaas: Founder of Conversion Therapy and Co-Founder of Autism Society of America
Horribly, Bernard Rimland isn’t the only problematic person founding Autism Society of America. Just as disturbing, and maybe even more harmful, is Ivar Lovaas the pioneer of Conversion Therapy – more commonly known as Applied Behavioral Analysis or ABA.
It’s Lovaas’ ‘autism therapy’ that insurance companies and Medicaid are now forced to cover due to the lobbying of these autism organizations on the federal and state level.
The autism organizations that were involved in lobbying for autism-related legislation that the Combating Autism Act (CAA) and the Autism Treatment Acceleration Act (ATAA) To Force Insurances to cover ABA:
- Autism Speaks board includes the founders or board members of these organizations during the era of the Combating Autism Act and ATAA:
In 2007, after the passage the Combating Autism Act, the founding family of Autism Speaks, the Wrights, had a huge family fight and daughter, Katie Wright, departed. Though she did continue her brand of anti-vaxxer ‘autism advocacy’ with SafeMinds, Generation Rescue and more recently, Children’s Health Defense.
Has Autism Society of America evolved since the passing of Bernard Rimland and Ivar Lovaas? That I don’t know, but I highly doubt they’ve left their ABA roots behind. I will be researching and sharing about this organization in the future. – but, unless they’ve detracted ABA, this organization is not an Autistic ally.
Requested this song by as done by Bill Reiland for this episode’s podcast.
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.