Autism: A Real Epidemic Or Better Counting? | Part 2 Of A Series

Inventing & Then Cashing In On The Autism Epidemic | Autism: A Real Epidemic Or Better Counting?

[Content Warning: Autistic history is very triggering. Please take caution this piece includes ableism, stigma, eugenics, homophobia, abuse, and more.]

Autism: A Real Epidemic Or Better Counting?

INVENTING AND THEN CASHING IN ON THE AUTISM EPIDEMIC” SERIES | PART 2

By Eve Reiland

Hollywood magic and celebrities for awareness were instrumental in bringing attention to autism in the late 90s. While Jon Shestack spoke proudly of “Air Force One” as an $85 million trailer for Cure Autism Now, many other parents were launching their own autism organizations and rallying parents of autistics to their autism belief system.

The noise and mystery these parents and organizations created around autism captured the interest of the general public and soon autism, a word most hadn’t known until the movie ”Rain Man,” entered the public conversation. Autistics born before this new wave of parent advocates emerged were often referred to by the autism community as the ’lost generation.’

Back then, autism was presented as an American horror story. It was described as if it were a boogieman that kidnapped children’s humanity and parents were left with a shell of a child who was now locked inside their mind. Each organization had their own theory on the cause of autism and how to ’recover’ or ’cure’ autistic children.

Some parents evolved into ’autism experts’ and built businesses around their advocacy work. They created websites, hosted conferences, published books, formed private and public online groups. They sought out parents of newly diagnosed autistic children, or parents who suspected their child might be autistic, and funneled them into their forums and support networks. Each of them wanted to be the loudest voice on autism heard in the nation. 

The leadership in these organizations often implied they knew more than most doctors about the rise in autism prevalence. They insisted there was an autism epidemic — all they needed was to have scientists investigate this phenomenon and then prove them right. … And, don’t forget the clock is ticking. Every day more autistics were being born, thus catapulting society into an even bigger public health crisis.

Well, maybe.

While everyone in the autism community insisted there was an autism epidemic in progress, they didn’t all agree on the cause of autism or the potential cures. The autism community was divided and viciously battling one another to be heard, believed and get their agendas funded.

Many types of autism were being spoken about. Terms like classic autism, late-onset autism and acquired autism were being used. Classic autism was present at birth. You were born autistic and would live your entire life autistic with this type of autism. Many parents insisted their child wasn’t born autistic, but became autistic after their vaccinations. This wasn’t classic autism, this was a newly invented kind of autism. It was this new autism that was responsible for the sharp uptick in autism prevalence. It was this autism that was contributing the most to the impending autism epidemic.

Late-onset or acquired autism happened to children who were born neurotypical or ’normal.’ Genetics wasn’t at fault here, instead environmental toxins were the culprit. Lots of attention was given to mercury, and the MMR and dTap vaccinations. Many parents believed these were the villains that caused autism and stole their child. They were angry and demanded the government investigate this connection. With so many parents reporting about their child’s regression after getting immunizations, it couldn’t just be a correlation. It had to be the cause, right?

This sub-community of the autism community would insist they weren’t anti-vaccine. They were pro-safe vaccines. Regardless of the proof of vaccine safety, these parents were convinced the vaccines did it. Perhaps there was an especially vulnerable population of children who didn’t tolerate the shots and became autistic? Perhaps some kids had a genetic predisposition and became autistic with an environmental trigger? This wouldn’t be all children, of course – Just some children. Children like their tragically ill child.

Health insurance wouldn’t cover complementary alternative medicine approaches to ‘recover’ a child to being not autistic. It also wouldn’t cover the very controversial ’autism treatment’ Applied Behavioral Analysis (ABA) that was bankrupting many families with the promise and hope it would make their child less autistic.

Parents decided to take action. In 1999, Kevin Murray, with his wife and some other parents, launched the Autism Coalition for Research and Education (ACRE).

“The Autism Coalition was formed to give a national voice to this devastating disorder and bring together the major nationally recognized research and education organizations, as well as many of the regional autism groups.

“The Coalition’s main goal is to raise funds and disperse grants to existing autism organizations with established biomedical and applied research projects and services to the autism community. 

“These fundraising ventures also are a means to raise national awareness of autism and the needs of the autism community. Although there were many competing and overlapping parent organizations advocating for autism, there was no single voice addressing the common concerns for the autistic community.”

Interesting the autistic community is mentioned in the last sentence, because in this coalition autistics were excluded. The membership included only parent-founded autism organizations: Autism Society of America (ASA), Cure Autism Now (CAN), Dan Marino Foundation, Doug Flutie Jr. Foundation, National Alliance for Autism Research (NAAR) and Unlocking Autism. The single voice addressing concerns included the autism community, and excluded the Autistic Community.

In the late 90s, the coalition was able to get legislation introduced and ultimately enacted. Parents and celebrities affiliated with this coalition testified in multiple senate hearings on autism. All of them delivered their testimony drenched in tragedy and burden narrative. Autism propaganda and myth were presented as facts. It didn’t matter that these parents’ fears were already known to be unfounded. The facts weren’t enough to dispel the myth. This was a community of true believers, and they set out to proselytize more parents into their autism belief system.

Autistics protested the false narrative and legislative efforts these parents promoted to no avail. While parents planned a ’Hear Their Silence’ rally in ’99, autistics conducted a counterprotest online titled, ‘Hear Our Voices.’ It’s not that these parent advocates couldn’t hear autistics. They heard us, and didn’t like what was communicated. They justified their actions to autistic activists, minimized concerns and did what they wanted anyways. Autistics be damned.

We’re Not Sure If It’s A Real Epidemic

In 1999 the idea of an autism epidemic was presented at congressional hearings with testimony given by parents, professionals, alternative medicine practitioners, and celebrities.

The true size of the autistic population was unknown, and at that point only two studies on autism prevalence had been conducted in the States. That information was from the previous decade and only looked at very specific areas of the country. Studies conducted in Canada, Europe and Japan did suggest autism prevalence might be 300 to 400 percent higher than previously estimated.

Two bills were introduced that year. The first was H. R. 274, the Autism Statistics, Surveillance, Research, and Epidemiology Act of 1999 (ASSURE). The second was the H.R. 997, the Advancement in Pediatric Autism Research Act. The bills are similar and both included the need to get a more accurate count of the autistic population.

“The discovery of effective treatments and a cure for autism will be greatly enhanced when scientists and epidemiologists have an accurate understanding of the prevalence and incidence of autism.”

The legislation, if enacted, would create up to five Centers of Excellence for Autism. These university sites would combine clinical and basic autism research, draw attention of scientists, and exist as part of a network that enables findings to be rapidly disseminated and replicated.

It would also establish at least three Centers of Expertise on autism epidemiology at the CDC. These centers would assist states in creating surveillance programs to track cases of autism and identify trends. Parents and some professionals had a feeling that the incidence of autism was on the rise.

Also, a centralized and open facility for gene and brain banking would be created, awareness campaigns launched, and grant about $40 million a year, over a period of five years, for autism research. It would also bring together resources of the National Institutes for Health (NIH), CDC, and the Department of Health and Human Services (HHS) to ‘attack the problem of autism.’

That autumn two celebrities testified to congress their support of the legislation. The first was actor Anthony Edwards, who had a role on the tv show ER.

“Because of ER, I have experienced something I believe all of you can relate to. Being in a position where 100’s and 100’s of worthy causes attempt to solicit your support. By way of this testimony I think it will be clear as to why I have dedicated myself to this issue: Autism.

“I am speaking on behalf of the 400,000 families in the US, and in particular for the hundreds of families I have come to know as I have worked with the Cure Autism Now Foundation over the past 2 years.”

“Here are the statistics, the dry stuff that isn’t supposed to make you cry. Autism affects at least 1 in 500 kids. That’s more than Multiple Sclerosis or Downs Syndrome or Cystic Fibrosis. That’s at least 400,000 people in the United States.”

Edwards used his celebrity status and voice to speak for every autistic in the country, but never once communicated with anyone in the autistic community about his advocacy goals for us.

“Half these kids will never learn to talk. Most will not marry or go to school. They will never live independently. Many will end up in institutions or group homes. We’re not sure if there’s a real epidemic or if it’s better reporting, but we do know that there are so many more families affected by autism than we realized.” 

Later, actress Rene Russo also testified in support of the bill as well.

“I learned that 1 in every 500 children have this disease and are diagnosed every year; that 400,000 people in the United States are affected with this disease; and it’s more common than multiple sclerosis, Down’s syndrome, or cystic fibrosis.” 

We’re not sure if it’s a real epidemic or better reporting, but we do know that in California, where I’m from, the Department of Developmental Services reports a 263% increase in the last 10 years. We found out this week that in Florida there has been a 500% increase.

“That’s terrifying to me. It’s terrifying for the kids that are here and the ones that aren’t.” 

Russo testified with great passion and spoke about the founding parents of Cure Autism Now (CAN).

“Portia and Jon explained a little bit of the history of autism. It has been ignored for so long because in the 1950s the medical community thought that it was bad parenting, trauma, or neglectful mothers. So, obviously the parents were stigmatized and they never moved forward to organize and the scientists did no research. 

“A generation of children were lost. “

Wait, hold up. A generation of children were lost? Where did they go?

Certainly Russo couldn’t be referring to elder generations of autistics as a great tragedy and mystery? We weren’t lost or missing. In fact, autistic advocates were fighting the autism community at that very moment to be heard above their noise. These folks might not know how many autistics existed, but we weren’t lost. Russo and Edwards most likely didn’t realize that instead of supporting autistics to have a better life with their testimonies, they were silencing us. We weren’t lost, we were erased.

Both bills would later be merged and introduced again as part of the Children’s Health Act of 2000.


The Lost Generation Speaks

Sample Letter To Congress Created By Autistics In Protest Of The “Hear Their Silence” Rally

Dear (Senator or Representative) Last Name Here:

I am a constituent, and an adult with autism. I am writing to you 
today to let you know that the "Hear Their Silence" rally for an 
autism cure does not speak for me.

Autism is a complex condition with many positive as well as negative 
aspects. We are not, contrary to popular ignorance, all "silent". 
Most of us who have speech delays learn to communicate, and many of 
us have never had a speech delay in the first place. Autism does not  
cause an autistic to suffer, or shorten our lives. Most autistic 
persons, including myself, are happy to be autistic. It gives us a 
special perspective on the world. The world would be a much worse 
place had there not been an Albert Einstein, an Erik Satie, an Andy 
Warhol, (insert your favorite AC from the past here if you would like), 
and other  scientists, inventors, composers, and artists who are 
recognized today as having been autistic.

I don't want a cure, or funding for research into a cure. What I want 
funded is appropriate education and practical support services that 
would allow me and persons like me to use our unique skills productively 
and to live happy and fulfilling lives. (insert details about what 
you want in your life here, if you'd like-- but keep the letter short!).

Sincerely

Your Name Here

Look Into Their Eyes & Hear Their Silence

A congressional hearing on autism was held to investigate the increased prevalence rates for autism on April 6, 2000. This hearing, Autism: Present Challenges, Future Needs — Why the Increased Rates?, was the first of it’s kind dedicating an entire day to autism.

Congress would hear from parents of an autistic, researchers, government officials and health professionals. Witness panels included “Autism: A Parent’s Perspective”, “Autism – The Vaccine Connection”, and “Autism: Treatment Options and Research.” Senator Dan Burton, grandfather of an autistic, presided over the hearing and gave the opening statement.

“This morning we are here to talk about autism. As we learned in our August hearing, the rates of autism have escalated dramatically in the last few years. What used to be considered a rare disorder has become a near epidemic. We have received hundreds of letters from parents across the country.”

“When asked about the increased rates of autism, many will immediately discount that there is even an increase–even though the latest statistics from the Department of Education show increased rate in every, single State. … Others will say the increase is due to better diagnostic skills. Others will say it is because the diagnostic category was expanded.”

There wasn’t an accurate accounting of autistics in the nation yet, but Burton was already convinced that the autism epidemic was real. He relied on parents and questionable ‘autism experts’ and professionals’ anecdotes as evidence.

“This increase is not just better counting. If we want to find a cure, we must first look to the cause. We must do this now, before our health and education systems are bankrupted, and before more of our Nation’s children are locked inside themselves with this disease.”

Autism is a neurodevelopmental difference and disability – not a disease. Well it’s not a disease unless you believe Burton and the professionals he had testify that day. This late-onset autism, or acquired autism, wasn’t really autism – but a newly invented disease that mimicked autism triggered by something in the environment. This was a different kind of autism.

Sadly, it seemed Burton focused on finding the cause and cure of autism so his grandson could be ‘normal’ again, rather than accept the fact he was a grandfather of an autistic. Instead of looking at what was needed to improve the quality of his grandson’s life, he believed healthcare charlatans that promised to ‘recover’ or ‘cure’ kids with some magical protocol. The entire hearing was broadcasted on C-SPAN. During the hearing, Burton gave a shoutout to his daughter, Danielle Sarkins.

Perhaps it was a difficult reality for Burton to accept a disabled family member since he argued against the Americans with Disabilities Act (ADA) in the late 80s. “The ADA is a last ditch attempt of the remorseless sodomy lobby to achieve its national agenda before the impending decimation of AIDS destroys its political clout. Their Bill simply must be stopped. There will be no second chance for normal America if the ADA is passed,” said Burton.

The theme of the congressional hearing was urgency to save autistic children from burdening their families, communities and nation with expensive support needs throughout their lifetimes. Every professional that reported vaccines or another toxic encounter could be a trigger for a sub-set of autistics also spoke to the impending autism epidemic. They believed this“regressive autism” was at fault for increase in autism prevalence rates, not classical autism.

During the hearing Dr. Mary Megson testified. She was a board-certified pediatrician, fellowshipped-trained in child development, a member of the American Academy of Pediatrics and on staff at the Medical College of Virginia

“I think we are staring a national disaster in the face which is affecting thousands of American children. … These children are physically ill, immunosuppressed, have a chronic autoimmune disorder affecting multiple organ systems. We must get funding to look at the etiology of autism and identify these children prior to autistic regression and prevent this disorder. 

“Implementing vaccine policies which are safe for all children should be our first priority. Mothers from all over the country have brought pictures of their autistic children to Washington this weekend. Most of these children were born normal and lost to ‘autistic regression.’  Look into their eyes, and you will hear their silence.

While Megson testified to ‘hear their silence,’ autistics were fighting to be heard.


Hear Our Voices

The Hear Their Silence rally was scheduled to happen on April 8, 2000 in Washington DC.

The stated goal of the rally was to increase knowledge and awareness of autism; improve educational and treatment methods; secure additional funding for research into effective treatments; and to search for a cure. The rally was co-sponsored by ARK and Open Your Eyes To Autism.

On March 28, 2000, Laura Tisoncik, with Autistics.org, responded to an email received from Autism Resource Konnection’s (ARK) Carol Fruscella, the originator of the Hear Their Silence rally. The communication was in regards to the pushback from autistics in regards to the rally’s message and goals.

Email Subject: As the REAL mother behind this event from day one!

Carol: I was the woman, who, had the idea, to go to DC to begin with…………

BOY, is this a SHOCK to see…………

Laura: It shouldn’t be, given that this was organized without any real input from the autistic community itself, and in complete disregard of what we value for ourselves.

Carol: You have no idea, of the heart and soul, put into this day!

Laura: That makes pursuing an agenda that ignores and offends autistics appropriate?

Carol: I have two children, both Autistic…………and this day, was for all the PEOPLE, in the AUTISM COMMUNITY, as a whole, to UNITE…………and to stand proud. 

Laura: You can’t just declare unity and have it happen. You need to make it happen first, and only then can you have it happen. This is the first commandment of coalition building. You broke it.

Tisoncik took the time to detail the reasons why the autism community wasn’t in unity with the autistic community.

“You disregarded the autistic community. We don’t all speak with one voice. We aren’t all high functioning aspies with Ph.D.s. Some of us aren’t even verbal– but we do have voices in the electronic world. The very name of the rally is an insult to many of us. You can no longer assume you’ll be hearing our silence. You are going to need to learn to hear our voices.

”Your agenda, though you deny it to us, and softpedal it at times, is to get Congress to pour money into finding a cure. I remember well the original announcements of this rally: how they talked of cures, spoke of children but not adults, and invited parent involvement– but not ours.”

”If that’s not still your not-very-hidden agenda, explain what your telephone number, 1-877-No-Autism could possibly mean. Explain why the word “cure” is used in your fundraising? On your website? 

“For most of us, ‘cure’ sounds exactly like ‘kill the person you are, but animate your body with some alien force.’ For most of us ‘prevention’ sounds exactly like ‘genocide’. And no, you don’t get to dismiss us all as a bunch of meddlesome aspie Ph.D.s. We are not all that. Some of the most adamant of the no-cure people I’ve known are non-verbal”

“If you want unity with us, you have to learn to compromise, not merely demand obedience.”

Tisonick suggested the first area of compromise would be to recognize that the word ‘cure’ was incredibly offensive to many autistics. If the focus was to find a cure, then that would destroy any possibility of cooperation between them.

“Soft-pedaling the cure agenda when confronted about it , without actually removing it from your telephone number, your fundraising, and every other place the agenda pokes through, and trying to hide behind warm fuzzy content-free euphemisms like ‘autism awareness’ will not create unity… just anger, at your presumption that we would be silent.”

If you want unity you need to give us a reason to support you.”


Cashing In: Suspect Research & Quack Cures

During the congressional hearing on autism in April of 2000, both Bernard Rimland and Andrew Wakefield testified. Rimland was a researcher known for his 1964 book, Infantile Autism, the founder of Autism Research Institute (ARI) and a co-founder, with Ivar Lovaas, of Autism Society of America (ASA). Wakefield was a gastroenterologist from the UK.

“Despite denials from some experts, there is a terrible worldwide epidemic of autism. Autism used to be considered rare, the kind of thing you see in movies or read about in books, but it never actually happened to anyone you knew, ” said Rimland, who consulted with “Rain Man” movie producers while they were filming, and influenced the narrative around autism. It’s said he also created a different ending that was included in the movie. Instead of Dustin Hoffman’s character living out his life interdependently with his brother, played by Tom Cruise, he goes back to the institution.

“In January of this year, the Autism Society of America estimated that autism had increased from 15 out of every 10,000 individuals to 1 in 500. And the repercussions of this increase are so far-reaching. These children will need specialized education and appropriate care for the rest of their lives.”

Appropriate care as stated by Rimland was very questionable. In 1995, Rimland launched Defeat Autism Now!, a network of people who had alternative approaches to ‘cure’ and ‘recover’ autistics. That year Rimland hosted a conference for DAN! In Dallas, Texas. He was able to gather about 30 professionals and scientists to share information on their work and how to defeat autism as swiftly as possible. What Rimland defined as appropriate care was published into a 40-page manual and made available for purchase.

DAN! was geared towards parents and physicians who wanted to avoid the medical community’s psychiatric care approaches and medications, and who believed their child’s autism was caused by an environmental trigger like vaccines. Many parents swore DAN! doctors “cured” their children, but there never was any research evidence to back those claims. Also, many large research studies conducted already disputed Rimland’s theories.

“This overwhelming surge in this disorder is not just going to affect individual families. This is going to impact our community and the entire world in which we live. My son is a beautifully colored thread in the fabric of my family. But even so, 1 in every 500 families should not have to live with this disorder. And what if these numbers keep increasing?”

Wakefield from the UK also testified. Just the year before, he had published research in the Lancet medical journal describing how he detected the measles virus in the bowels of 12 autistic children. That report led to a sharp drop in the uptake of MMR vaccines worldwide and the numbers of children infected with measles began to rise.

At the hearing, Wakefield said his purpose was “to report the results of the clinical and scientific investigation of a series of children with autism.” He stated that his testimony shouldn’t be construed as anti-vaccine, rather he was an advocate for the safest vaccination strategies for the protection of children.

“I am also here on my behalf representing the children who have come to me for investigation.”

Wakefield then launched into a presentation that utilized slides and a lot of circular talk, gibberish and outright quackery for the rest of his testimony. It seemed he couldn’t complete a thought, much less replicate it. Unfortunately, many of the doctors and professionals presented that day were followers of Rimland and Wakefield’s autism belief system. .

Another of Rimland’s cohorts was Ivar Lovaas, pioneer of Applied Behavioral Analysis (ABA). Lovaas didn’t testify that day but Rimland did speak to ABA in his testimony.

“As a parent and a full-time professional researcher, I am bitterly disappointed with the medical establishment’s dismal record with regard to autism over the past 60 years. The medical schools as well as the Government agencies have consistently supported outmoded, unproven and even disproven ideas, including the one that autism was caused by “refrigerator mothers” who did not love their children, thus causing autism.”

“The medical establishment was opposed to behavior modification, or what is now called the ABA approach. They said that this was not a way to treat autism, because autism was based on deepseated emotional problems, so a technique that is used to train animals cannot be used to improve autistic children. That was untrue.”

Then Rimland gets to the point: Money matters.

“Tens of millions of dollars have been spent on nonproductive lines of research while virtually no money at all has been given to research on methods of alternative medicine which are far more promising in terms of both safety and efficacy.”

If the autism epidemic existed in the manner Rimland suggested, then the perceived increase in autism prevalence would be caused by this new type of autism. The ‘late-onset’ or ‘acquired’ autism triggered by something toxic in our environment would be the culprit for so many children becoming autistic during their toddler and preschool years. It was this autism that Rimland and parents of this subset of the autism community wanted investigated further utilizing the budget for autism research that would be created by legislation if enacted.


A Day Of Unity?

In the email exchange between autistic advocate, Laura Tisonick, and parent of an autistic, Carol Fruscella, a day of unity as the theme for the Hear Their Silence rally was discussed.

CarolA day of Unity………..

Laura: Like I said, if you want unity, you have to make unity. You haven’t made anything of the sort. You didn’t even try. You just expected us to be silent.

Carol: Thank you so much, for your nonsupport. What a slap in the face.

Laura: It seems to me that you’re the one who left out what autistics themselves want. You leave us out, you build your agenda around the very things that offend us the most, and then you say we are not supporting you?

Carol: Just one day………..TO show, how great and strong we are, united together…….

Laura: We are not united. Again, you can’t have unity without dialogue and compromise.

In fact it isn’t even meaningful to say “we”, because you never included us as a community in your plans. Your plans for us were to “hear” our silence.

It’s not hard to find autistic input. Wander over to http://www.ani.ac for a start, and surf from there. You’ll find plenty of us. We’re big, we’re lively, and we’re connected. Alas for the name of your march, we aren’t silent.

CarolOne day……….A moment in time…………

Laura: I’m not interested in being silenced by your agenda for one moment.

I “made my voice”, as I called it, after being inspired by the civil rights movement– you can’t speak out against injustice if you can’t speak. You’re giving me one more good thing to use it for.

Carol: I think you all missed the point………I am so sorry, that you missed mine……..

Laura: Oh, I got it. I’m hyperlexic. I can read that telephone number. 

CarolTo bring “Awareness to AUTISM”.

Laura: Awareness for what purpose? A rally in Washington? Hmm… it just so happens that my “area of special interest” is politics. I seem to remember that, generally, groups that want to bring public awareness to an issue spend their money on public service announcements and similar campaigns. Groups that want to bring their agenda to Congress (money for a cure) generally rally in Washington. It’s a simple matter of cost-effectiveness.

And awareness of what about autism? Of our “silence”? Of how pitiful we look on your posters? Of every imaginable heartstring-pulling stereotype you could pull out of a hat for fundraising purposes? Or maybe that those of us who are adults all have three Ph.Ds and a Nobel Prize and no longer need help? I would prefer the world be aware of something bona fide about autism. I, after all, have to live with the prejudices you’re trying to build.

CarolNothing More………..Nothing Less………..Period.

Laura: The word that comes to mind here is “liar”. I can read.

CarolAny Questions ?????????

Laura: You never had unity. You left us, our needs, and our priorities out, as usual. You’ve chosen to insult and humilate us with everything from the name of the rally to the poster children to the appeals to pity. You are blatantly lying when you say that you’re only about “autism awareness”. How on earth can you say that you are shocked by this?


Living With These Children Can Be Hell

Testimony from parents at the hearing focused on the tragedy and burden their autistic children placed on them, their families and communities. Included on the panel were parents James Smythe and Shelley Reynolds.

Smythe thanked Congress for his opportunity to speak for his son and the ‘tens of thousands of autistic children around this country.” He stated that there were millions of people who were affected by autism, literally. Those folks included not just parents, but brothers, sisters, aunts, uncles, grandparents and more.

“The first is that living with these children can be hell. They can destroy your entire home. You cannot keep anything nice around. They will ruin your rugs. They will jump off the furniture. They will move the furniture around the room, push it over, break things, clear counters with one sweep of the arm. And they do all of these things with no malice whatsoever. 

“One cannot take them to friends’ homes. One cannot stay overnight at friends’ homes. When one is at a friend’s or a relative’s home, they will be worse there because it is a strange environment.” 

After speaking to the ‘hell’ autistic children caused, Smythe’s second statement was to point out that to his knowledge no one is consistently measuring ‘acquired’ autism.

“And I would suggest to you that we are now defining autism behaviorally; that certain activity, certain behaviors on the part of these children cause them to be classified as autistic, and then, most of the medical community gives up.

Smythe speaks to the newly invented late-onset autism.

“And there is a difference between classical autism, a child who is born autistic, that one knows is autistic, and most doctors have been trained about autism because that is the way they were born, and they show up that way; and this late-onset autism that we are seeing, this acquired autism, if you will.”

“The end result is that our educational models are not recognizing that some of these children may in fact just simply be sick; they may just simply be diseased. As a result, we are letting them down, and they are going through the educational system basically being warehoused, without any treatment, either medically or educationally.”

At the end of his testimony, Smythe refers to this ‘subset’ of autistic children as most likely being responsible for the uptick in autism diagnoses – not a fact, but his belief.

Shelley Hendrix, parent of an autistic and founder of Unlocking Autism, also testified at the autism hearing in 2000.

“What had happened to our beautiful baby boy, and how could we help him? My husband and I decided to become advocates and work for increased funding for autism research and awareness. The answers may not come in time to help our son, but we are hopeful that we can persuade you to see the need for intensive research regarding this disorder which is affecting more and more children every year.“

“In Liam’s case, we have no doubt that he developed his autism as a direct result of an adverse vaccine reaction.” Hendrix presented her personal belief as evidence.

“Through our organization, Unlocking Autism, we have talked with thousands and thousands of parents from across the country, and their story is the same: Child is normal; child gets vaccine; child disappears within days or weeks into the abyss of autism.” 

“If you doubt me, I invite you to come to the ‘Hear Their Silence’ rally on April 8th on the Mall, where the `’Open Your Eyes’ project will be displayed and view the thousands of pictures that we have called and realize that 47 percent of those people who participated believe that vaccines contributed in some way to the development of their child’s autism.”

Hendrix provided more anecdotes as evidence. 

“Parents like me are relying on you to demand that the pharmaceutical companies retrace their steps once again and that the public health community look at the possibility that these things might indeed not just be a coincidence. …”

“I know my children, and I know what happened to my son. As far as I am concerned, the needle that silently slipped into my baby’s leg that day became the shot heard around the world.”

With live coverage on C-Span, these parents of autistics were able to interject fear into the hearts of many and raised concerns about their own children being snatched by autism. Fear ruled over facts, and the only autistics in attendance were used as a prop.


It’s Going To Take A Revolution

Parents of autistics didn’t listen to autistic’s concerns about the Hear Their Silence rally. Instead they went forward with their plans exactly as they intended. The power of these parents wasn’t lost on autistic advocate, Laura Tisonick.

In a different email exchange with a representative of ASA on March 27, Tisonick would list very clearly the issues with the theme, message and presentation of their performance and how that would negatively affect all autistics. Tisonick already recognized that unless autistics were parroting parent-centered and fearful autism advocacy messages, autistics would be excluded. If we couldn’t be used as a prop, then these parents wanted nothing to do autistics and the autistic community. They might give lip service, but the real message was clear: autistics weren’t welcome here.

“I hate the autism establishment. I hate the parent-professional axis that rips people to shreds then drops them into oblivion when they hit adulthood,” stated Tisonick in their email response.

“I hate anything and everything that pays lip service to autism services but with all its resources couldn’t do what I could do with next to nothing. 

“I hate autism societies that have no use or place for autistics except as an occasional token to perform as freak shows at conferences.

“I hate ‘child centered’ organizations that leave adult children to eat coffee grounds when there are no more parents to serve. 

“I hate a system that mourns for the purgatory of the parent but doesn’t even give a damn about the hell of the autistic.

“I hate all of this, and so very much more. I know that not every parent is complicit in this … and I know not every professional carelessly or callously destroys lives … 

But I have no illusion that the good guys are in the majority. Or that the bad guys aren’t pretending to wear the white hats.

“I also have no illusion that the parent-professional axis will, as constituted, ever do a damned thing for adult autistics, or for that matter honestly put the interests of child autistics before their own personal interests, given that they don’t seem to think we have any part to play in what they decide to do to us.

“Services go to money, money goes to power, and power right now goes to professionals (insurance payments and research funds) and parents (money to help “autistic children”). There’s no more room in that for us.

“But I know perfectly well that that won’t do. It’s going to take a revolution. It’s going to take overthrowing that axis of power that leaves us voiceless and serviceless and invisible.”


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