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 non-Autistic 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 Gay Conversion Therapy also 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.
The Autism Community Is Not The Autistic Community
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 Autism Community Is Not The Autistic Community
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.
Apparently, 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 to note, we’re getting heard a lot more loudly these days. There many non-Autistic parents of Autistics that are incredible allies to our community. There are more every day. So, understand this, you don’t own the parenthood narrative – and what privilege you must have to ever possibly think that you did. Is that ableism?
So how about now you just call yourselves what you really are: the Autistic Conversion Therapy Movement.
It’s your advocacy. Own it.
Note: I updated this from the original post with a longer article. I had help from Bill to read what I wrote and then finish it from there. That is what is posted here now.
LightItUpGold #ActuallyAutistic #AllAutistics #NothingAboutUsWithoutUs #AutisticDignity #AutisticRevolution #DisabilityRights
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.