The Parent-Founded Autism Epidemic
“Inventing And Then Cashing In On The Autism Epidemic” Series | Part 1
By Eve Reiland
So how did parent-run organizations convince the world there was a looming autism epidemic? The idea of an epidemic most likely sources back to the 80s, but it really gained traction in the mid-90s thanks to some privileged parents of autistics, celebrity influencers, and a whole lot of artistic license and movie magic.
In the late 90s, autism was promoted as a monster that could snatch anyone’s child. Parents proclaimed that autism could attack without warning, even while babies slept in their cribs. These parents communicated that they watched in horror as their typically developing child regressed in language, expression, lost learned skills and eventually became trapped in their minds unable to connect with the rest of humankind. Some described their autistic children as soulless and incapable of love.
These parents passionately declared autism kidnapped their child, and if it could happen to them it could happen to anyone. Autism didn’t discriminate, autism prevalence was on the rise and something terrible had to be causing this dramatic increase in the autistic population. Perhaps something environmental. Whatever the cause, these parents insisted, Autism was swiftly becoming a public health crisis.
During this era, the internet was becoming more available and parent-run organizations created online communities to exchange information, network and support one another. Previously, in-person conferences, mailed newsletters and telephone calls were the common communication avenues used. A pen pal group maintained by one of these organizations was how Jim Sinclair, autistic self-advocate, was first able to connect with other autistics.
“When I had first started seeking to communicate with other autistic people in the late 1980s, I had approached autism organizations and professionals who worked with autistic people, in the naïve belief that they and I, and other verbal autistic people, had some common purpose,” said Sinclair.
“My purposes in seeking to form a mutual aid-self help group for autistic people were to share first-hand experiences to counter the uniformly gloomy and pessimistic (and often offensive and insulting) portrayals of autism in the existing literature; and to advocate for improved support services for autistic people.”
Sinclair also shared they had lost their job and were homeless at that time, but unable to qualify for any assistance because they were considered “too bright to be disabled.”
Autistics Seeking Autistics
In 1991, Sinclair attended the Autism Society of America (ASA) conference. The environment of the event was a sensory nightmare of flickering lights, constant motion, and noise. Worse, the speakers and literature focused on autistics being a “defective type of human,” and that “our very existence is a source of never-ending grief for our families.”
Regardless of the cacophonous and gloomy environment, Sinclair made a point to attend.
“Some of us came to autism conferences anyway, because we had no other way to meet others like ourselves. But even if we did happen to find other autistic people there, the environment was very hostile from both a sensory and an emotional standpoint.
”At best, meeting at conferences gave us a chance to find out about the existence of someone we might want to get to know better, and to exchange contact information so we could follow up later, usually by means of writing letters. Not many of us were on the Internet at the time.“
During the 1991 conference, several autistic advocates made a point of of asking questions and making comments during the Q & A portion of the presentations. They identified themselves as being autistic each time. The presenters seemed to welcome the contributions, and many parents from the audience stayed after to ask questions.
The visible presence of autistics at the conference attracted the attention of the ASA Board of Directors. Autistics were approached at the conference by a board member and a few NT parents and asked if they’d like to help establish an ASA autistic advisory committee, have an autistic representative at each board meeting, participate in the planning of future conferences, and have space in their community newsletter.
The autistic self-advocates were surprised by the offer but accepted it immediately. They shared their goal of launching a self-advocacy organization with these folks, and ASA responded they could provide some financial and administrative support too. This offer, Sinclair would later learn, was pure gaslight. There was some lip-service given to it at the following July board meeting, with an authorization given to a board member to ’take charge’ of organizing an autistic advisory committee. Sinclair attempted to follow up by phone, but nothing ever came of it.
Later, an ASA board member would confirm Sinclair’s suspicion that the public display of support was an empty gesture meant to impress parents of autistics. The ASA board catered to parents because parents had the most voting power in their organization. They never expected to actually implement any changes, and as far as they were concerned, autistics didn’t have the ability to organize without them.
The Power of Autistic Connection
In 1992, Autistics did what the ASA board of directors thought impossible and organized their own group called Autism Network International (ANI). The founders included Jim Sinclair and Kathy Grant from the States, plus Donna Williams from Australia. All three had connected originally through a parent-maintained pen pal list.
Williams traveled to the States in February ‘92 to promote her first book, Nobody Nowhere. The distance between Grant and Sinclair wasn’t unreasonable and so the opportunity for all of them to meet became possible. They gathered at Grants’ home in St. Louis, Missouri. This was the first time any of them had ever existed in an all autistic space, and the experience was profound. Williams wrote about it in her second book, Somebody Somewhere, on page 186.
“Despite thousands of miles, our ‘our world’ concepts, strategies, and experiences even came down to having created the same made-up words to describe them. Together we felt like a lost tribe. ‘Normal’ is to be in the company of one like one’s self.
“Jim stayed for a few days and among the three of us there was hardly a word of silence. We all had so much to say. Over the three days, we barely managed to prepare three cups of tea and drink them. We hardly cooked or ate. Yet it was such a great atmosphere. No one would criticize us here for staring at a hot cup of tea and not working out what to do about it until it was stone cold three hours later.”
Sinclair wrote about that visit as well. “My own recollection of this meeting is of feeling that, after a life spent among aliens, I had met someone who came from the same planet as me. We understood each other. At one point I overheard Donna talking on the phone to someone associated with her book tour. Apparently the caller had asked her something about how the visit was going. I heard Donna’s answer: ‘We don’t get a lot of cooking done, but we speak the same language.’
“It was an amazing and powerful experience to be able to communicate with someone in my own language. I had sometimes been able to establish meaningful communication with people before, but it always involved my having to learn the other person’s language and do constant laborious translating. Here, with people who shared my language, meaning flowed freely and easily.”
They all agreed: autistic space was a good thing for autistic people and it was time to end their dependency on parent-run organizations. With that in mind, they launched Autism Network International (ANI).
“We called it a ‘network,’ not a ‘community.’ At that time, I really didn’t believe ‘community’ would be a meaningful concept for autistic people. We don’t tend to function very well in groups, let alone as groups,” wrote Sinclair.
“Autistic connections seem to be made on a person-to-person basis, one person at a time. In our new autistic network, as we envisioned it, the newsletter would be the vehicle for information-sharing among the group as a whole, while the penpal list would allow for contact among people who wished to have person-to-person contact.”
These founders also decided that regardless of the functioning labels they were given by the medical community, their mission was to advocate for all autistics.
“We decided that our mission was to advocate for civil rights and self-determination for all autistic people, regardless of whether they were labeled ‘high-‘ or ‘low-functioning,’ and regardless of whether they were able to participate independently in our language-based network.
“To that end, we understood that we really had to make our newsletter available to parents and professionals, because educating parents and professionals was the only way we could hope to affect the lives of autistic people who weren’t able to participate on their own.”
Failed Promises & Pushback
After ANI launched, several announcements were sent to ASA and other parent-run autism organization’s for inclusion in their community newsletters. None of them published the information and the only response heard was via a whisper campaign launched at Sinclair by an ASA board member. This person told others that Sinclair was ‘not really autistic.’
It didn’t seem to matter that the two psychologists who reviewed Sinclair’s record, and confirmed an autism diagnosis, were members of ASA’s professional advisory board. One of the doctor’s even testified under oath at a rehabilitation hearing that Sinclair was in fact autistic. The facts here didn’t fit the organization’s agenda and therefore didn’t apply.
Sinclair wrote of the experience, “In a clear attempt to undermine our group cohesion, Kathy and some other autistic adults were directly ‘warned’ that I was not what I claimed to be. Meanwhile, Donna was encountering similar denunciations as her book began to receive international attention.”
The pushback from NT parents didn’t stop ANI from moving forward. That November ANI published their first Our Voice community newsletter.
“We had about fifteen subscribers, most of whom were non-autistic parents of autistic children. It was hard to find other autistic people. In terms of numbers, the initial response was discouraging. Hostile responses from established (NT-run) autism organizations were also unexpected and upsetting,” wrote Sinclair.
“Even worse, it seemed that when we did manage to find each other and work together to further our goals, responses from the ‘autism establishment’ escalated from indifference to active subterfuge.”
The negative response from NT parents and professionals was a startling. Many of the autistics involved with ANI had spoke to NT parents extensively in the past and never before encountered such hostility.
“Almost invariably, the parents were pleased and excited to hear from us. True, their primary interest was in using us as resources for their children rather than supporting us in our own goals; but still, they were not hostile toward us. It seems that one autistic person at a time–and preferably a passive one–might be welcomed as an interesting novelty or an amusing diversion or possibly even a valuable source of information and insight.
“But autistic people organizing together, autistic people pursuing our own interests rather than furthering the interests of parents and professionals–suddenly we were perceived as a threat.”
The Flame Wars
At the 1993 International Conference on Autism, Sinclair challenged the ’autism as a tragedy’ narrative in their presentation, Don’t Mourn For Us. The conference was a joint effort between Autism Society of America and Autism Society Canada, and was hosted in Toronto that year.
Sinclair had submitted the same prose the previous year to the ASA conference committee, and it wasn’t accepted. In fact, it was personally rejected by the ASA president with instructions to the committee to do the same. When Sinclair submitted the presentation again, this time to the international conference, it was accepted by the Canadian host and Sinclair was included as a speaker at the conference.
Sinclair’s presentation was well-received by many parent attendees. Some stopped by the ANI booth afterwards to ask questions, and many of them signed up to become a member of ANI. Not all folks were happy with Sinclair’s message though. There was a segment of the NT parent autism community that were threatened by the work of Sinclair. It didn’t conform to their tragedy narrative of autism, and it didn’t support their organizations goals. The internet was becoming more accessible to parents, professionals and autistics alike and the discontent soon spread from the conference to the online forums. Some disgruntled parents spewed their vitriol at Sinclair in the form of hate mail.
After the ‘93 conference, there was an incredible surge of autistic conversation on the parent-run autism forum. Autistics were reconnecting with one another online after returning home. Soon autistics who hadn’t attended the conference were participating in the chat as well. This spike in traffic received negative responses from many of the NT parents. They complained autistics were ’wasting bandwidth’ on topics that held no interest for them. They didn’t appreciate or understand autistic humor and were annoyed by the many perservations on conference details. They were outsiders of this autistic sub-group in their autism community and they didn’t like it.
Autistics flamed back that the conversations were of interest to them. They were members of the forum too. Besides, autistics should be able to communicate with other autistics on an autistic forum, right? Nope. Every time autistics became active on the forum, or didn’t affirm autism was something other than a tragedy, parents would attack and lob accusations at them. The parent-run autism forum quickly became a hostile space for autistics. Sinclair refers to this post-conference online phenomenon as the Snore Wars, because the first complaints that started flame wars between autistics and NTs began as playful perservations in regards someone’s snoring at the conference.
As the aggression from parents grew more intense, the members of ANI decided it was time to create an autistic space, a safe space, of their own. Many autistics left the NT autism community forums, and found their way over to ANI’s newly created list-serv. It was here that autistics learned they could do more than just network — together they actually did create a community. ANI helped many autistics learn “the important lesson of delighting in a shared autistic culture.”
The Rise Of Parent-Founded Autism Organizations
By the late-90s, parents of Autistics feared that more autistics were being born than ever before. They spoke of an autism monster that snatched children while they slept in their cribs, trapped them in their brains, and then kept them locked away from their parents forever.
These attentive parents were helpless to stop autism. Some of them stated that autism was worse than death, and they were left with a broken child who couldn’t express or feel emotions. They couldn’t respond to their parents with an ’I love you too.’ Autism devastated these families, and they demanded that scientists find a cure and find it now. With today’s technology and abilities, a cure for autism had to be possible. They just needed to fund more research.
Autism began being hailed as a ‘hidden epidemic’ by parents and autism professionals. They believed a drastic increase in the autistic population would unfairly burden society, even bankrupt it, due to the predicted costs associated with supports and services throughout our lifespans. Soon autistics wouldn’t be the only ones ’suffering autism.’ All of society would plunge into a pit of despair if a cure wasn’t found. A war on autism must be waged and won. If it wasn’t, the end of humankind as we knew it was near.….
It’s not an accident that the description of autism began sounding like a movie trailer for a blockbuster action-thriller-horror flick in the mid-90s. The tragedy version of autism popular among parents and professionals went absolutely viral after movie producer, Jon Shestack, applied his creative talents to the message. He and his wife, Portia Iversen, were a Hollywood power couple and at that time parents to a newly diagnosed autistic child named Dov.
When these privileged parents learned there was no known cause or cure for autism, they lost hope for their son’s future. They decided that something had to be done, and in 1995 launched Cure Autism Now (CAN). With the power of parent advocates and more funding for autism research they believed a cure was possible, and that it could be discovered their son’s lifetime. When these parents were told you can’t actually cure autism, they refused to accept the facts and marched on with their crusade.
These parent-founders also didn’t fully explain to vulnerable parents what the cure entailed, or that if it was discovered, it wouldn’t help their autistic child already born. The cure wasn’t about saving autistic babies from growing up and living a complete life as autistic. No, it was about a prenatal test and the prevention of birth. The cure for autism would be the same cure society had created for Down Syndrome, an abortion. This wasn’t about quality of life, or supports and services. It was modern-day eugenics.
“Cure Autism Now believes that early detection, prevention, treatment and eventually a cure for autism are possible. It is only a matter of time, energy, commitment and money. Particularly now, when the explosion in scientific and medical knowledge is leading to important discoveries every day, we cannot let another generation of children slip away.”
Note the word ‘believe.’ CAN and other organizations often made statements in regards to their beliefs on autism. They advocated to legislators and others in a position of power about their autism ’beliefs’ to influence the direction of science and where funds should be allocated.
“CAN works with national and local media, Congress and the National Institutes of Health to encourage increased awareness and more aggressive funding of biological research in autism. CAN promotes collaboration among the NIH funding institutes, as well as increased funding. To ensure this, CAN works to educate legislators as to the true cost, prevalence and devastation of autism.”
Cure Autism Now wasn’t the only parent-founded group complicating the lives of autistics with their misdirected and harmful advocacy. Lots of parents launched their own autism organizations in this era, and were scrambling to be the loudest, most influential voice on the impending ‘public health crisis.’
Every organization seemed to revolve around a belief system on autism’s cause — some had all natural ’recovery’ options, others believed conversion therapy was the solution, and some focused on eugenics, but called it a cure — and each wanted to influence the direction of autism research and be proven right. Each organization diminished the other’s work as wrong or incomplete.
Autistic people for these organizations were used as a prop or self-narrating zoo exhibit. If an autistic didn’t parrot the correct agenda, or didn’t fit these organizations tragedy mold, they weren’t included. While these groups were vicious to one another, they were even worse to autistic self-advocates. Autistics who dared to openly advocate for human, civil and disabled rights were attacked by all sides of the ’autism community.’
Parents told autistics we weren’t like their child, and that we weren’t an ’autism parent’ and therefore couldn’t understand. These NT parents insisted that their children had no ability to self-advocate and therefore needed them to be their child’s voice — and they believed their parent voice to have more merit in the movement than the voice of any autistic alive. Parents told other parents not to listen to us. We ’barely affected’ autistics were told we shouldn’t fight a cure for autism, and that we were being unfair to autistics, like their child, who couldn’t communicate by speaking, and/or had intellectual disabilities, and needed a cure. We were told to quit being ’selfish’ about not wanting a cure.
By 2007, the Autism Wars between parents would make national headlines, but by then autistics had already been muted from the public conversation. These organizations acted like autistic adults didn’t exist, or that we didn’t exist in the numbers that we do. They certainly didn’t want the public to realize the autistic adult population was far larger than they suggested. If folks knew our actual population size and prevalence rates, it would deflate their ’autism epidemic’ and therefore defund their autism agenda.
Online, when autistics advocated ‘we don’t want a cure,’ ‘autism parents’ would dogpile and attempt to bully self-advocates out of the movement – that or devalue and minimize our message. It didn’t take long for autistics to realize the only feedback these organizations wanted from us was compliance or silence. There wasn’t any other option allowed.
In the late 90s, before the big breakup between autism organizations (circa 2007 – 2009), Cure Autism Now attempted to bring some unity to these groups for the first time. Shestack recognized the in-fighting de-powered the autism community’s efforts to introduce autism legislation and get it passed. If these orgs joined forces though, they could get far more accomplished, and then they’d all win.
“People used to think autism was a psychological disorder,” said Jon Shestack, “but it’s a medical disorder that will have a medical cure.
The Hollywood Hookup
In 1997, Shestack leveraged his Hollywood connections and brought celebrities and a movie premiere into the mix.
“Air Force One landed on movie screens in grand style: big plane, big star (Harrison Ford), big price tag ($85 million) and eventually, big ticket sales ($159.3 million so far). That’s great news for any movie executive, but for Air Force One producer Jon Shestack, the film’s success brings something more, something closer to his heart: a chance to use his moment in the limelight to focus attention on autism, a neurological disorder with no cure, which affects his 5-year-old son, Dov.”
“Complete with Hollywood types and floodlights, the Los Angeles movie premier of Air Force One raised $250,000 for Cure Autism Now, or CAN, a foundation set up by Shestack and his wife, Portia Iversen, to raise money and awareness”
Shestack wooed parents to his organization with celebrity dazzle, including these moms who were invited to attend Air Force One’s movie premiere:
“It was the ultimate fantasy–a trip to Hollywood for the premiere of one of the hottest new films of the year, and a post-premiere party with Tinseltown’s elite.”
“And last Monday night, three mothers who are not accustomed to the luxury of Hollywood, and who spend most of their time seeing to the care of their special-needs children, stepped onto a red carpet at the Cineplex Odeon Century Plaza Cinemas along with such luminaries as Arnold Schwartzenegger and Maria Shriver, Martin Landau and, of course, Harrison Ford.”
“‘We had all gotten new dresses, done our hair, and let ourselves get caught up in the glamour of the evening,’ said Medovich. For Terri Tuso, whose son is also named Nicholas and is also 6, all the frantic arrangements to schedule childcare were worth it for the moment when ‘I was standing 2 feet away from Harrison Ford and Arnold Schwartzenegger!’”
Interesting that a night for autism awareness didn’t include any autistics, but the parents were able to nab the photo op with Arnold. It became standard for the autism community to spotlight parents, include autistics that could be used as a prop, and exclude self-advocates.
“It would be a shame if we didn’t take advantage of a super-generous community,” said Shestack of the entertainment industry. “I think of Air Force One as an $85 million trailer for a CAN benefit.”
The celebrities involved in this ’super-generous community’ would super-charge Shestack’s autism epidemic narrative, impress and bring NT parents into CAN’s community, influence legislation and politicians, shape public opinion, and silence autistics from the national conversation.
Autistics, outside of a token, weren’t wanted or needed here — and we couldn’t compete with the masses of NTs this type of activism attracted. The size of the autistic population might be far larger than most folks ever expected, but we were still a minority group. Autistics were far outnumbered by this new wave of parent advocates hellbent on a cure. We simply couldn’t compete with their unified roar about the autism epidemic being real, and they outright refused to listen to autistics who attempted to educate them otherwise.
In his advocacy work with CAN, Shestack very effectively weaponized non-autistics against autistics.
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.
The next in the series to be published soon is ”Autism: A Real Epidemic or Better Counting?”
This multi-part article will launch the “Fallout of Autism Advocacy” year-long series on InternationalBadassActivists.org
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