Inventing And Then Cashing In On The Autism Epidemic

By Eve Reiland

Remember the Autism Epidemic predicted in the late 90s? Autism was touted as a public health crisis by non-Autistic founders of autism organizations and parent advocates. Autism wasn’t a commonly-known diagnosis in that era, and most folk’s experience with autism was from watching the 1988 movie “Rain Man” starring Dustin Hoffman and Tom Cruise.

The year before the movie was released, the Diagnostic and Statistical Manual of Mental Disorders (DSM) criteria for autism drastically evolved. For the first time it included pervasive developmental disorder – not otherwise specified (PDD-NOS), and removed the 30-month onset requirement. Autism was first presented as a spectrum of conditions in the DSM-IV back in 1994 (revised in 2000).

Throughout the 1990s, researchers had hoped to identify genes that contributed to autism. After the Human Genome Project was completed in 2003, many studies tried to zero in on a list of ‘autism genes.’ They found hundreds, but could not link any exclusively. When it became obvious that finding the genetics involved and corresponding treatments wasn’t possible, experts made a choice to characterize autism in an all-inclusive diagnosis that ranged from mild to severe.

The 2000s saw a sharp uptick in autism prevalence. This gave the impression that clinicians lacked consistency in the diagnostic process, and that they may have been swayed by parents angling for a diagnosis, or influenced by services available in their state.

With a fervor, most parent advocates believed differently. They insisted that more Autistics were being born than ever before, and the surge wasn’t due to an evolving understanding of autism and the criteria change in the DSM. Nope. They were convinced something insidious must be causing the population increase, and provided a theme-park-size list of possible culprits.

Each year the suggestions for the cause of autism grew more preposterous. At some point everything from vinyl flooring to the internet was blamed, and parent advocates and autism orgs alike wanted each whim fully investigated by scientists. Oh, but in order to do that, they needed more scientists to focus on autism, and more money to attract researchers to the field — to which all of that required more donations, more awareness and more legislation. Frankly, they just needed more of everything to save this generation of children, and they needed it yesterday.

With such an intense population increase and no cure, these parents of Autistics warned that this wasn’t just a tragedy for them. Autism could kidnap anyone’s child. Worse, if a cure wasn’t found soon, the next generation would falter under the burden of caring for so many Autistics. All of humankind would suffer autism then. This was a public health crisis. This was an impending epidemic. Something had to be done.

Whether they realized it or not, these parent advocates were able to strike a nightmare into the heart of the national conversation, control the narrative around autism, influence federal and state legislation, gain billions in research funding, launch many start-ups, and create the now booming-by-the-billions autism market.

The problem? The autism epidemic wasn’t real. It was a marketing ploy and lobbying gimmick used by parent-founded autism organizations. It was a rallying cry to grab the world’s attention and direct it to their cause. It was a tactic instrumental in achieving a massive amount of attention in a very short amount of time, and it worked. It worked so well, even today the general public still believes there is an autism epidemic.

In all of this hoopola, Autistics were only included as a prop, and those who didn’t fit into the autism mold these parent’s shaped were exiled. In the beginning, the parent-created autism community gave small lip service to autistic self-advocates at their conferences and events, but it didn’t last long. Autistic self-advocates didn’t represent their version of autism. By the mid-2000s, the autism community excluded the Autistic community completely.

For many years, autism advocates pretended that autistic adults didn’t exist in the numbers that we do. Autistics who were critical of their ableist awareness campaigns were scorned, minimized, dehumanized and even vilified. To the world at large, these autism advocates acted like the Autistic community didn’t exist. To Autistics, they argued we weren’t autistic enough to matter, or we were too Autistic to have any ability to self-advocate. Regardless of the reason, these parents believed their voice for their child to be far more important than the lived-experience of any autistic alive.

While this brand of advocates screamed autism speaks, it’s time to listen — they simultaneously used their privilege to silence Autistics from the national conversation. They circumvented the entire autistic community and did what they wanted. This pattern of suppression and oppression, for the most part, still remains in effect today — When the autism community is included, the Autistic Community is excluded.

Why did the leaders of the autism community create this pattern? Because Autistics in the Autistic Community knew the truth. There wasn’t an autism epidemic. Nope. No impending autism tsunami either. The Autistic community also knew vaccines didn’t cause autism, ABA was conversion therapy and abuse, and the only cure possible for autism was prevention of birth. The same cure society created for Down Syndrome.

So how did we get here? How did these autism organizations and parent advocates convince the world there was a public health crisis? How did they convince legislators there was a real epidemic coming? How did they get stigma and abuse ingrained into our support systems? Why did these parent-founded autism orgs weaponize non-autistics against Autistics?

Oh this is a true tale that makes the documentary of ”Tiger King” look tame. The history of autism organizations and their founders includes big business, the government, world leaders, presidents, senators, the autism wars, snake oil, venture capitalists, movie producers, fashion designers, lawsuits, death threats and more.

And none of it could’ve happened if there wasn’t first an autism epidemic.


Inventing And Then Cashing In On The Autism Epidemic

This collection of articles will focus on the history of the autism epidemic that never existed, and what it accomplished for autism orgs and companies at the expense of Autistic people.

After this introduction, there will be 7 more installments published in upcoming weeks. The first up, “The Parent-Founded Autism Epidemic” is now available.

This multi-part article will launch the “Fallout of Autism Advocacy” year-long series on InternationalBadassActivists.org

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