Deconstruction of the Autism Speaks” is a new series I started in honor of “the month” in April 2021 on This series will continue all year. This breakdown article from Town & Country will be included there as well. 

Each article in this series will take an Autism Speaks press release, or an article, and use my Autistic perspective to break it down and illustrate the patterns I notice. These articles will be tagged “Deconstruction of Autism Speaks” and added to the Autistic History archives.


A Terrible Mystery

Autism (a group of traits and behaviors known clinically as autism spectrum disorders, or ASD) is a developmental disorder that emerges in infants and young children. It is shattering because it targets the very traits that we intuitively link with being human – the ways in which we learn, speak and relate to other people, moment by moment. In place of these, autism causes actions ranging fro the bewildering to the bizarre.

Whereas the typical two-year-old boy would smile at his parents or romp with a playmate, a child with autism might rock back and forth, twirl in circles, flap his hands, bang his head against a wall or sit for hours lining up toy cars or spinning their wheels. At TW, an age when most youngsters pick up new words almost daily, an autistic child may be mute; “speak” in squeaks, grunts or gestures; robotically repeat a word or phrase, or stop speaking altogether. His temper tantrum might Ben an hours-long shriekfest set off by bright lights or an unfamiliar situation, and his eating and sleeping patterns may be chaotic or rigidly ritualistic. 


  • Autism is a terrible mystery
  • Autism: a group of traits and behaviors known clinically as autism spectrum disorders (ASD)
  • Autism is a developmental disorder that emerges in young infants and young children
  • Autism is shattering. 
  • Autism targets human traits like the ways in which we learn, speak, relate to others
  • Autism causes actions that range from bewildering to the bizarre
  • An Autistic child might rock, twirl, flap, or bang head against a wall
  • An Autistic child might sit for hours longing up toy cars or spinning their wheels
  • An Autistic child may be mute, speak in squeaks, grunts or gestures
  • An Autistic child may robotically repeat a phrase or word
  • An Autistic child might stop speaking altogether
  • An Autistic child’s temper tantrum can last hours and be triggered by bright lights or unfamiliar territory
  • An Autistic child’s eating and sleeping habits may be chaotic or rigidly ritualistic.


Autism has many faces.Some 60 to 75 percent of Autistic children are also mentally retarded to a degree (with an IQ of 70 or lower), but a smaller subset of children on another part of the spectrum have Asperger’s Syndrome., which is marked by high intelligence, verbal dexterity and an inability to read social cues. (Boys are ten times as likely as girls to have Asperger’s.) These children can talk fluently and at length about, say, train timetables while remaining oblivious to their listeners’ boredom or impatience.

Wherever a child falls on the spectrum, the disorder can be supremely challenging to his or her parents, Family, teachers and doctors — especially since we still know frustratingly little about what causes it. “At this point, there are no medical tests, like X-rays or blood work, that we can use to make a diagnosis,” says pediatrician neurologist Gary Goldstein, M.D., president of the prestigious Kennedy Krieger Institute, in Baltimore. Diagnosis, which takes considerable clinical skill, is based on a battery of behavioral observations and developmental assessments. (Mentally retarded children tend to score poorly across the board on intelligence and developmental tests, while autistic children often score lower on language and abstract reasoning but higher on visual-spatial and rote-memory tasks.)

And the number of diagnosed cases of autism has leaped alarmingly in recent years.


  • Autism has many faces
  • 60 – 75 percent of children are also intellectually disabled with an IQ of 70 or lower
  • A smaller subset of children may have Asperger’s Syndrome
  • Asperger’s Syndrome is marked by high intelligence, verbal dexterity and an inability to read social cues
  • Boys are 10x more likely to be Autistic than girls
  • Asperger’s children can speak fluently and in great detail about interests such as train time tables
  • Asperger’s children are oblivious to their neurotypical’s boredom or impatience
  • Anywhere a child lands on the spectrum is supremely challenging to their parents
  • Family, teachers and doctors know frustratingly very little about autism
  • There is no known cause for Autism
  • There are no medical tests for Autism says Gary Goldstein, M.D.
  • Intellectually challenged tend to score poorly across board of intelligence and developmental tests
  • Autistic children often score lower on language and abstract reasoning, but higher on visual-spatial and rote-memory tasks
  • The number of Autism cases has risen alarmingly in recent years


Autism on the Rise

Autism is the nation’s fastest-growing developmental disorder. Twelve years ago, 1 child in 10,000 was diagnosed with it, now 1 in 166 children will fall somewhere on the autistic spectrum, with boys outnumbering girls four to one. “Our center has gone from treating only a handful of children with autism to treating a thousand,” says Goldstein. Currently 1 million to 1.5 million people are diagnosed with autism in the United States – a number could reach 4 million White in a decade if the trend continues. 

Much of the increase occurred when clinicians adopted a new and broader set of diagnostic criteria in the mid-1990s; today many children are diagnosed with autism who would previously have been labeled mentally retarded or otherwise learning disabled. Still, says the psychiatrist Thomas R. Insel, M.D., director of the National Institute of Mental Health (NIMH), “I’m not convinced that this increase can be explained by differences in diagnosis. My own opinion is that there’s been a very real increase in the last ten to fifteen years.” And now the latest governmental figures bear him out. “If you dont’ know someone who is affected by autism, you will,” warns one expert. “It’s just a matter of time.”


  • Autism is the nation’s fastest growing developmental disorder
  • 12 years ago 1 in 10,000
  • 2006: 1 in 166 will fall on the autism spectrum
  • In 2006 1 to 1.5 million are thought to be Autistic
  • Autistic people could number 4 million by 2016
  • Much of the increase in diagnosis is due to new and broader set of diagnostic criteria in the mid 90s
  • previously many Autistic children would’ve received a diagnosis of mental retardation or otherwise learning disabled
  • Thomas R. Insel, M.D., is not convinced the increase can be explained only by differences in diagnosis. He believes there’s been a very real increase in the past 10 -15 years
  • If you don’t know an Autistic now, in the future you will


Rebirth of a Movement

At this frightening juncture, there is also cause for hope. Parents and advocates express a sense that our understanding of “the world of autism,” as they often call it, is poised for a Great Leap Forward. A new group of activists (including the Slatkins), scientists, financial clout and the latest scientific methods to the quest for answers. 

Not only that, but they are building collaborative networks with one another, and throughout the field, in the service of one goal: to understand, treat and ultimately cure autism. Ambitious, yes – but if they succeed at saving thousands of children, they will have pulled off one of the greatest rescue missions in history.

This new crusade builds on the decades-long work of the pioneering autism organizations, notably the Autism Society of America (ASA) and Cure Autism Now (CAN), as well as high-caliber specialized schools such as the Eden Institute, in Princeton, New Jersey; and the Alpine Learning Group, in Paramus, New Jersey. And the new advocates, like their predecessors, have been spurred into activism by the personal pain of having a child or grandchild with autism.


  • There is cause for hope at this frightening juncture
  • The ‘world of autism’ is going to take a Great Leap Forward
  • A new group of advocates: parents, advocates, scientists, financial clout and latest scientific methods
  • Building networks among each other for one goal: understand, treat and cure autism
  • If advocates succeed at goal: they’ll have saved thousands of children. Will have pulled off one of the greatest rescue missions in history
  • Builds upon decades of work of pioneering Autism organizations: Autism Society of America, Cure Autism Now, Eden Institute, Alpine Learning Group
  • Advocates are spurred by personal pain of having an Autistic child or grandchild


When David Slatkin was a toddler, his parents looked for quality schools dedicated solely to autistic children (something they feel is every autistic child’s right), and they found that there was no such school in their Manhattan community. So they decided to create one themselves. 

After discussions with philanthropists friends such as Ophelia Rubin and Merryl Tisch and with New York City schools chancellor Joel Klein, the Slatkins created a foundation, the New York Center for Autism (NYCA), with a three-pronged mission: education, community outreach and the promotion of biomedical research. NYCA’s flagship would be a charter school designed to model the best practice for New York City public schools, where 4,500 autistic children attend special-education classes. “We didn’t want to open a school that would just help twenty-four other families who were financially comfortable,” says Harry. “We wanted to make a huge difference in the community of autism.”

Having assembled the NYCA board and launched their charter application, they began to explore how to bolster autism research. Through board member Deeda Blair (also on the board of the Foundation for the National Institutes of Health, or NIH), they met NIMH’s Tom Insel, who summarized the current state of research, its possible future directions and areas of need. The Slatkins came away sobered. “We realized how little is known,” Laura says. “It was clean that although CAN and NAAR (the National Alliance for Autism Research) had done a fantastic job of building the foundation, hundreds of millions of dollars were needed to make more progress.”

The ‘aha’ moment came that night, as the Slatkins and Insel attended the NIH dinner celebrating the Human Genome Project.*”

“Tom looked around he room, which was full of these brilliant, brilliant scientists,” Laura says, “He told us, ‘If you can get the greatest scientists in the world to focus on autism, you’ll get where you need to be much faster.’ We were very excited; it gave us a direction and a sense of how we could help.


  • David’s parents looked for quality Autistic schools
  • Slatkins believe Autistic children have the right to attend all-Autistic schools
  • Discussions with Ophelia Rubin (philanthropist), Merryl Tisch (philanthropist), Joel Klein (New York City School Chancellor)
  • Wanted to create an Autistic school for more than the financially privileged Autistic children. 
  • They wanted to make a huge difference in the ‘community of autism’
  • NYCA mission: education, community outreach and promotion of biomedical research
  • Explored how to bolster autism research
  • Deedra Blair, NYCA Board Member & NIH, introduced Slatkins to Tom Insel, NIMH, 
  • Tom Insel summarized the current state of research
  • CAN & NAAR did a fantastic job building the foundation but hundreds of millions of more dollars were needed
  • Slatkins had an ‘aha’ moment while attending the NIH dinner with Insel celebrating the Human Genome Project
  • Insel said: If you can get these greatest scientists in the world to focus on autism you’ll get where you need much faster


Coincidentally, the next day they met billionaire Jim Simons, founder and CEO of the hedge-fund-management company Renaissance Techologies Corp., and his wife, Marilyn, who’s family had been touched by autism. Over the next two years, the couples discussed how to act on Intel’s advice. Laura also introduced the Simonses to NBC Universal chairman Bob Wright and his wife, Suzanne, who were feeling their way through the landscape of autism after their two-year-old grandson’s diagnosis. “Both families were very committed to moving the field forward; they wanted results and answers,” Laura says. “I thought it would help to establish strong lines of communication.

Thereafter, as the three couples pursued their separate advocacy efforts — the Slatkins through NYCA, the Simonses through their foundation and the Wright’s with their fledgling organization Autism Speaks – they also strategized on how to work together. Last year, this synergy bore its first fruit: a two-day autism think tank cochairs by the Slatkins and the Simonses in collaboration with Columbia University and cosponsored by the Wrights, the NIH, CAN, NAAR and others. “We invited twenty of brightest scientists in the world — Nobel laureates, scientists who were not focused on autism — to brainstorm with autism experts, advocacy groups and individuals,” Laura says. “Tom Insel spoke, and the Simons Foundation offered six grants of $120,000 each to researchers who would enter the field. There was a lot of good energy in the room, with scientists talking to philanthropists and the government talking to private foundations. Conversations took place that shaped the future direction of autism.” Clearly a new guard of advocates had emerged, determined to take the battle to new heights.


  • Slatkins met billionaire Jim and Marilyn Simons : Jim is founder & CEO of hedge-fund-management company Renaissance Technologies Corp
  • Simonses had been touched by autism. Simons Foundation
  • Two years of discussion on how to act out Tom Insel’s advice
  • Laura Slatkin introduces the Simonses to Bob and Suzanne Wright
  • Three couples pursued separate advocacy efforts and strategized on how to work together
    • Slatkins: NYCA
    • Wrights: Autism Speaks
    • Simons: Simons Foundation
  • Two-day Autism Think Tank co-chaired by Slatkins, Simonses in collaboration with Columbia University and cosponsored by the Wrights, the NIH, CAN, NAAR and others.
  • 20 scientists invited: Nobel laureates, scientists not focused on autism
  • Scientists brainstormed with autism experts, advocacy groups and individuals
    • Tom Insel spoke at Think Tank
    • Simons Foundation offered 6 grants of $120,000 each to researchers who would enter the field
    • Scientists talked to philanthropists
    • Government talked to private foundations.
    • Conversations took place that shaped the future direction of autism
  • A new guard of advocates had emerged.
  • Advocates determined to take the battle to new heights.

What They SayWhat I see

– Town & Country Magazine publishes the article “Autism’s Angels” in August 2006 
– Author: Diane Guernsey

– Audience/Demographic target: Non-Autistic 



– Gary Goldstein, M.D.
– President of Kennedy Krieger Institute

– Tom Insel
– Director of NIMH

– Deedra Blair
– NYCA Board Member

– Ophelia Rubin
– Philanthropist 

– Meryl Tisch
– Philanthropist

– Joel Klein
– New York City School Chancellor

– Autism Expert


– Jim and Marilyn Simons
– Family has been touched by autism
– Simons Foundation


– Bob and Suzanne Wright

– Bob Wright, co-founder of Autism Speaks
– Grandparent of an Autistic
– Vice Chairman of General Electric (GE)
– CEO NBC Universal

– Suzanne Wright, co-founder of Autism Speaks
– Grandparent of an Autistic


– Laura Slatkin
– Mom to an Autistic child and non-Autistic child

– President of Candela Group

– Harry Slatkin
– Father of an Autistic child and non-Autistic child

– President of Limited Brands
– Founder of Slatkin & Co.
– Now President of Slatkin & Co.
– Owner and chairman of HomeWorx
– Co-founder of Next for Autism
– Creator of NYC Autism Charter School






– Town & Country Magazine publishes the article “Autism’s Angels” in August 2006 
– A company of William Randolph Hearst
– Author: Diane Guernsey

– Audience/Demographic target: Non-Autistic



– Gary Gold Stein, M.D.
– President of Kennedy Krieger Institute

– – – Tom Insel
– Director of NIMH

– – – Deedra Blair
– NYCA Board Member

– – – Ophelia Rubin
– Philanthropist 

– – – Mery Tisch 
– Philanthropist 

– – – Joel Klein
– New York City School Chancellor

– Autism Expert
– Unknown expert quoted
– how does this article define ‘autism expert’?


– Jim and Marilyn Simons
– Non-Autistic family of an Autistic 
– Simons Foundation


– Bob Wright
, co-founder of Autism Speaks.
– Non-Autistic grandparent of an Autistic
– Not an Autistic Ally
– Dangerous Influencer
– Silences/and or speaks over Autistic advocates and Autistic people.

  – Suzanne Wright, co-founder of Autism Speaks
– Non-Autistic Grandparent of an Autistic
– Dangerous Influencer
– Silences/and or speaks over Autistic Advocates and Autistic People


– – – Laura Slatkin
– Non-Autistic Mom to an Autistic child and non-Autistic child David and Alexandra

– Founding member of Autism Speaks
– Board of directors from 2005 – 2018

– Founder of NEST Fragrances
– President of Candela Group
– Co-founder of Next for Autism
– Creator of NYC Autism Charter School

– Served on Board of Directors at Columbia University Department of Psychiatry
– Served on Hunter College Autism Research And Policy Board 
– Served on board: Henry Street Settlement House
– Served on board: The New England Center for Children

– – – Harry Slatkin
– Non-Autistic father of an Autistic child and non-Autistic child David and Alexandra

– President of Limited Brands
– Founder of Slatkin & Co.
– Now President of Slatkin & Co.
– Owner and chairman of HomeWorx
– Acquired Belstaff with Tommy Hilfiger and Labelux Group
– Chief Executive Officer of Belstaff
– Co-founder of Next for Autism
– Creator of NYC Autism Charter School

– Contributing editor at Elle Décor Magazine 
– Appears regularly on QVC 
– Guest appearances on such shows as CNNThe Martha Stewart ShowExtra TVE! NewsCNBCABC and Comedy Central.

– Partnered with Weill Cornell Medicine and Columbia University Vagelos College of Physicians and Surgeons to open Center for Autism and the Developing Brain



– Cure Autism Now (CAN)


– National Institutes of Health (NIH)

– National Institutes of Mental Health (NIMH)

– Applied Behavioral Analysis (ABA)
– 50 hours a week
– overcome cognitive limitations
– overcome behavioral limitations
– Develop along a more ‘normal’ development path

– Human Genome Project

– World of Autism
– Parents of Autistics call their parenting experience this.

– Community of Autism 

– New Guard/Generation Advocates

– Parents & Grandparents
– advocates
– scientists
– financial clout
– latest scientific methods

– Rebirth of a movement 

– Autistic Rights: Quality Autistic Schools

– Building Networks

– Autism Think Tank
– Tom Insel spoke
– Simons Foundation offered grants to researchers
– Scientists talked to philanthropists
– Government talked to private foundations
– Future direction of autism conversations

– Applied Behavioral Analysis (ABA)
– This is Autistic Conversion Therapy
– All ABA is abuse.

– Human Genome Project
– Tom Insel, Slatkins, Wrights, Simons meet

– World of Autism
– Welcome to the pretend world of Autistics as created by non-Autistics
– This ‘world of autism’ is centered on parents and non-Autistic experience of Autistics. 

– Community of Autism 
– The “Autism Community” is not the Autistic Community. The Autism Community is comprised of parents of Autistics and others love or care for an Autistic. The Autistic Community is comprised of Autistic people and a few or our true allies.

– New Generation Advocates

– Non-autistic Parents & Non-Autistic Grandparents

– Non-Autistic advocates

– Non-Autistic, or not openly Autistic, scientists

– Financial clout, from hedge fund managers, philanthropists to business tycoons – but no Autistics included here either.

– Latest scientific methods: No doubt the ones they funded research for with donations they took from local communities and then never returned it to the community in any manner. 

These ‘new scientists’ going into the field of Autism are handpicked by parents and grandparents.

– NO Autistics included, unless used as a prop.

– Rebirth of a movement

– Who’s movement? The Autistic Civil Rights Movement was already well underway worldwide by 2005. There’s no mention of these advocates in the article, or any other Autistic adult.

– This rebirth of a movement is focused on non-Autistic parents and others 

– This rebirth of a movement excluded Autistics in meaningful positions or in positions of leadership or anywhere other than as a prop for their movement’s agenda.

– This rebirth of a movement is really about getting legislation passed for insurances to cover ABA and other therapies these parent-led organizations deem important. 

– Building networks/cabal

– This network started with NIMH, NIH, NYCA, Autism Speaks, Simons Foundation, New York City Schools, Philanthropists, parents and grandparents, CEOs, media moguls, business tycoons and more, but not Autistic people. 

Autistic activists were locked out of representation in legislation about us. This was done with intent. As was the word and goal of ‘cure.’

– Autism Think Tank

– Tom Insel spoke of NIMH while excluding Autistics
– Simons Foundation offered grants to researchers while excluding Autistics
– Scientists talked to philanthropists while excluding Autistics
– Government talked to private foundations excluding Autistics.
– Future direction of autism conversations excluding Autistics. 
– No Autistics included at the table. Excluded completely unless used like an Autistic prop. 

Marketing & Language Used
– Autism’s Angels article
– Parent perspective of Autism
– Personal perspective of Autism
– Professional perspective of Autism

Included language & marketing:

– Combination Person First Language (PFL) & Identity First Language (IFL)

– Narrative

– Autism is a terrible mystery, Autism is shattering, Autism targets human traits, Autism causes bewildering and bizarre behaviors, temper tantrum caused by sensory exposure, personal pain

– violent, destructive, screaming, yelling

– autism prevalence, autism awareness, cause of autism, autism mystery, 

– Alarming, hyperactive, devastating, hopes/dreams lost, not one of the ‘lucky ones’, vicious, tormented, hidden/dark thoughts, crushing, fillicide, haunted, suffer, painful

– Autism’s Angels article
– Non-Autistic parent perspective of Autism
– Written for non-Autistic population 
– Written as if Autistic people would never read the article

Included language & marketing:

– Combination Person First Language (PFL) & Identity First Language (IFL).

Note: Autistic Community uses IFL.

– – – Narrative

– Autism Myths, Mystery, Misinformation & Speculation Narrative

– Speculation, not science, on reasons for prevalence

– Stimming is referred to as bizarre/bewildering behaviors. 

– Echolalia/Pendantic Speech referred to as robot speaking.

– Mutism referred to as ‘child stopped speaking’

– Meltdown referred to as temper tantrum. These are very different events and should not be confused. 

– Severe othering/dehumanizing of autistics

– Tragedy Narrative
– Autism Prevalence
– devastating, crushing, haunted, suffer, painful

– Violence/Fear Narrative
– Autism Prevalence
– What will happen to my child when I die?

– Martyr/Hero Narrative
– Hopes/dreams lost
– Personal pain of parenting an autistic
– New advocates will find a cure for Autism and save thousands of children.
– New advocates are working to pull off the greatest child rescue mission in history
– Advocates determined to take the battle to new heights

– Cure/Eugenics/Treatment Narrative

– Autistic Conversion Therapypromoted as early Intervention/ABA

– Treat/Cure Autism is goal


– Autistic Culture/Community Connection

– Identity First Language (IFL): Autistic Culture uses IFL.
– Autistic Prop: There are no Autistics interviewed/quoted in a meaning full manner in this article.


From the subhead “Autism A Terrible Mystery” to the last sentence, this segment is saturated with tragedy and fear narrative. It’s deeply steeped in stigma, mystery and myth to promote the goals of parent-led autism organizations via their non-Autistic parent influencers, while at the same time excluding Autistic advocates. 

It is also incredible at depicting when the “autism cabal“ was created and who was involved, their connection to Autistics, and their background. It describes the origin of the Autism Speaks Influence Network, which included:  National Institutes of Mental Health, National Institutes of Health, New York City Schools, NYCA, Autism Speaks, CAN, NAAR, Simons Foundation, and more. It also illustrates the exclusion of Autistics.

The sheer mass of privilege, money and power that was involved in promoting their agenda for Autistics, while at the same time excluding and silencing us too, has been phenomenal. This article also shows that Autism Speaks wasn’t just some grassroots organization powered by everyday parents. No, it clearly landscapes how they leveraged their connections and built an army around their organizations and agendas. The most frustrating thing, this writing clearly shows how inbred Autism Speaks was with government officials from their conception forward (hobnobbing at the 2003 Human Genome Project event nonetheless).

It’s astounding how bold-faced and public these privileged non-autistic parents interviewed share their vested-interest agenda of autism education, treatment and cure. They push ABA as the only hope for the “epidemic” of Autistics already born today. They seek the ”cure” to prevent the birth of future Autistics based on ‘autism risk’ during pregnancy. Every quote included here leverages stigma, tragedy and name recognition to establish legitimacy, whether it’s Tom Insel, with National Institutes of Mental Health (NIMH), or Bob Wright and his affiliations to NBC and General Electric. 

This article pushes hard to garner the support of parents of Autistics (and others alarmed by the super scary impending Autistic epidemic) and promotes them as a ‘new guard of advocates’ to build an army to ‘save a generation of children.’ This army building is purposeful in driving donations, and to get support in passing legislation to cover expensive Autism therapies, while at the same time silencing Autistic activists fighting to get Autistic Conversion Therapy (ABA) halted and banned. The Combating Autism Act was introduced in May of 2005, and then signed into action by President George W. Bush on December 19, 2006. This article was published August of 2006.

This featured section of the article again quotes Laura Slatkin, a non-Autistic parent of an Autistic child. She invokes the rights of autistic children, stating it’s a right for Autistic children to have segregated education and attend all-autistic schools. This is a right as stated by a non-Autistic parent who is actively excluding and silencing Autistic activists from having a voice in the matter, as per our civil rights. The type of autism schools Slatkin refers to as an ”Autistic civil right” are ones like NYCA that utilize Autistic Conversion Therapy (ABA). 

At the time this article was printed, ABA was an out-of-pocket expense. The Combating Autism Act of 2006 forced insurances and Medicaid to cover ABA for autistic children, thus removing the burden of the cost off the shoulders of the parents, and provide government and other funding for schools like NYCA. This ‘therapy’ was incredibly expensive, but it was touted to ‘treat’ and help ’recover’ Autistic children by the time they were in elementary school. Thus these converted autistics could then be mainstreamed into typical education classes.

ABA was also promoted as a way to reduce the burden of cost over the lifetime of an Autistic. ABA would ‘recover’ Autistics and they’d no longer need lifetime services or supports the world just couldn’t afford. Since ABA was the cure for Autistics already born, the focus on community infrastructures was never built. Autism would be ‘cured’ in 20 years time and none of that would be needed, they said.

Also, let’s remember, Slatkin is not just any parent of an Autistic chirping her tragedy narrative to a reporter. She is a founder of the New York Center for Autism Charter School (NYCA), and a founding board member of Autism Speaks. Also, she is the founder of the Autism Speaks sponsor, NEST Fragrances. 

The term ‘vested interest’ comes to mind when Slatkin calls for autistic rights as being the right to attend all-autistic schools with ABA as their backbone. 

Autism Speaks officially launched on February 11, 2005. In May of 2006, Autism Speaks published a press release regarding their disconnect with the Autistic community over their goal to find the ‘cure’ for autism. “Articles of Understanding“ were written to explain why this parent-led organization pushed onward with the agenda to ‘cure’ in spite of the loud outcry from Autistics who fought the solutions Autism Speaks was offering. 

The options for the “autism cure” were and are: Autistic conversion therapy (ABA), or a genetic test during pregnancy to screen for “autism risk” and to prevent the birth of the Autistic baby. Alison Tepper Singer, Senior Vice President of Autism Speaks, penned the official Autism Speaks article.

Autism Every Day is a 2006 documentary film sponsored by Autism Speaks, and produced by Lauren Thierry, Jim Watkins and Eric Solomon. It follows mothers with severely autistic children and consists mainly of interviews with the mothers.

A 13-minute version of Autism Every Day debuted at a fundraiser named “A New Decade for Autism” in New York City on May 9, 2006, and made its mainstream debut on Don Imus show on MSNBC the following day. It was selected by the Sundance Institute as a special screening film at the 2007 Sundance Film Festival. A 7-minute version of the film was also uploaded to Autism Speaks’ YouTube Channel, however as of 2019, the video is de-listed from its channel.

The New York Observer said the film was a
short documentary film … about the lives of mothers of autistic kids. The film consists mainly of interviews with mothers (and scenes of them with their autistic children), mothers whose lives have been utterly transformed. The situation of these mothers is just unrelieved, unrelenting.

According to Stuart Murray, author of Representing Autism: Culture, Narrative, Fascination, disability rights advocates criticized the film for categorizing the disorder as “one of problems and difficulties, especially for parents”, while ignoring the positive aspects.

Criticism and controversy

One interview in the film that drew significant controversy was that of Alison Tepper Singer, who described how she had contemplated driving off a bridge with her autistic daughter Jodie Singer when faced with having to place her in a school for disabled children, saying “It’s only because of Lauren, because I have another child, that I didn’t do it.”.

Some have drawn a connection between Alison’s words in the film and the murder of 3 year old autistic girl Katie McCarron on May 13, 2006, 4 days after the film’s debut, by her mother Karen McCarron.

Like Harry and Laura Slatkin, Singer also participated in a documentary where she talks about her filicide ideation, and describes how she almost acted upon that ideation in the form of a murder/suicide. That her Autistic child was in the room and could hear her didn’t matter. Singer stated the only reason she didn’t complete the ideation was because she had a typical child who needed a mother. The documentary/propaganda film that Singer was interviewed on was a product created by Autism Speaks. 

Filicide ideation is a red-flag alert and makes the parent lacking insight a danger to their child, and possibly themselves. Unlike what these Autism Speaks affiliated-parents would have you believe, this is not normal. It’s incredibly dangerous and needs immediate help via crisis care. It’s astounding that these interviews attempted to normalize filicide ideation as something all parents experienced, and never addressed the danger and need for real and immediate psychiatric help. No, these interviews were instead created and leveraged to promote the tragedy and fear narrative that would drive donations by the millions to Autism Speaks, and organizations like them. 

Singer originally worked with Bob Wright at NBC. Four days after the release of “Autism Every Day,” Karen McCarron murdered her 3-year-old Autistic daughter, Katie McCarron. Filicide continues to be an incredible issue in the Autistic Community. 

This Town & Country article was published in August 2006. The Combating Autism Act was signed by the President George. W. Bush on December 19, 2006. 

Even more disturbing is the outline of how the most powerful voices on autism today met, collaborated and then created a network to work together to educate, treat and find a cure for autism – while at the same time excluding and silencing Autistic advocates. From government officials to media moguls, this newly formed ‘autism cabal’ was created by some of the most powerful and privileged people in the world. Those people have been intent on being ‘the voice’ for all things related to autism, and have swept in on any opportunity that could profit their businesses and pocketbooks while ‘doing good for autistic children.’

Insel is quoted in this article stating his personal opinion on autism prevalence, rather than a science-backed opinion formed in his professional capacity as Director of NIMH. Insel promotes autism myth … not science. Because he’s the Director of NIMH, his words bring legitimacy to these parents and their affiliated organizations’ claims. Insel is simply regurgitating the speaking points of Autism Speaks, and further legitimizing the fake news about the Autism Epidemic. 

Directly below Insel’s quote, is a statement by some anonymous Autism Expert. This quote is nested so close to Insel’s words, at first glance it looks like it belongs to him. It does not. To whom the ‘autism expert’ quote belongs in this story is a  true ‘autism mystery.’

”I’m not convinced that this increase can be explained by differences in diagnosis. My own opinion is that there’s been a very real increase in the last ten to fifteen years.”

– Tom Insel, Director of NIMH

If you don’t know someone who is affected by autism, you will. It’s just a matter of time.”

– Unnamed “Autism Expert”

The narrative in this article is so dramatic it’d be laughable — well, only if it hadn’t so incredibly harmed Autistics worldwide over the years. It’s interesting how the ‘Autism Mystery’ is answered in this article at the start, and then suspicion is cast on the research and science by parents and NIMH’s Tom Insel. Autism Speaks, and organizations like them, fan the flames of parental fear with the tragedy narrative, the rising Autistic population, and promote false hope for a ‘cure.’

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.

The only inclusion of Autistics in this article is their use as a prop, a tragedy or an example. Autistics aren’t included in any meaningful manner or quoted. In fact the entire Autistic Community is pushed aside and an ‘Autism Community’ is promoted. This community doesn’t include Autistics that challenge the group-think of the ‘Autism Community.’

The article lays the stigma on thick with the definition of Asperger’s Syndrome* and defines it as: Autistic children with high intelligence, who can speak well and recite train times tables. These Autistic children are oblivious to the boredom others feel when they talk, and can’t accommodate non-Autistic people’s dialogue interests and entertain them. Boys are ten times more likely to be this kind of Autistic than girls.

Note: Asperger’s Syndrome is Autism. Asperger’s Syndrome is no longer a current term and is being phased out of use worldwide. Some Autistics still identify with the term Aspie. 

While some Autistics connected with the identity of Aspie due to their diagnosis years ago, there are some issues with Aspie Supremacy in the Autistic community (a form of elitism). Also, there are some parents of Autistics that use these false functioning labels to diminish, dehumanize and belittle Autistic activists they don’t agree with. 

Today there is much conflict with the use of the name Asperger’s due to Hans Asperger’s recently exposed affiliation with Aktion T4 and other NAZI horrors against disabled and autistic people.

The detriment medical model of autism is the only focus here, and there’s not a solitary mention of Autistic adults in this article – you know, the ones who are the real activists in the Autistic Civil Rights Movement. In this article, Autistics and our actual fight for civil rights are erased. It’s as if we don’t exist.

Instead Autism Speaks, and affiliated organizations, created a “World of Autism.” 

This world has even been referred to as the ‘Secret World of Autism’ and it includes parents of Autistic children, professionals and other non-Autistics. What it doesn’t include is the majority of Autistic people. This “autism community” only includes the Autistics that these organizations can use as a prop or exhibition. Autistic people, however, we have our own community and it’s referred to at the Autistic Community. Most of what the general public knows about Autistic people comes from the non-Autistic “autism community.” 

The language used in this article is incredibly stigmatizing, dehumanizing and utterly unbelievable hateful bullshit at times. The definition of Asperger’s is akin to hate speech and infuriating that these parents (who are already fighting the Autistic Community over their agenda for a cure) are able to paint a stigmatized image of Autistics, promote autism mystery, fear monger with autism prevalence, and promote abuse as ‘therapy’ without a single quote from any Autistic on these matters. 

In this article, Autistics as people simply don’t exist. We are erased. Autism is promoted by Autism Speaks, and organizations like them, as a childhood disorder and touts recovery is possible via ABA. 

This article further mystifies autism with the subhead: Autism has many faces. No, autism doesn’t have many faces – unless you’re looking at the faces of many different Autistic people. The other myth of the time was there were hundreds of different kinds of autism. That’s not true either. There’s autism and co-morbidities, not high and low-functioning autism. There’s no such thing as severe autism. There is autism and various co-mordibidties, and various levels of support needs.

These co-morbidities are often described as autism when they are not. Autism isn’t treated, but many co-morbidities can be treated and improve quality of life.

Note: I am Autistic and have high support needs due to my co-morbidities, and require the support of a caregiver for basic self-care and quality of life needs.

The segregation of Autistics argument pattern is observed in this story. This segregation becomes known later as the ‘not like my child’ argument where parents silence Autistics who advocate against the harms promoted by Autism Speaks. The Autistics these parents shun are often referred to by them as the ‘barely affected.’ The ‘barely affected’ Autistics shouldn’t fight a ‘cure’ because they were the ‘lucky ones.’ Autistics who disagreed with these segregationists are often bullied, dog-piled, doxxed and worse. 

The labels low-functioning and high-functioning are, again, another false segregation of Autistic people based on the detriment medical model of autism. 

Parents are led to believe that Autistic children could be ‘recovered’ with early intervention therapies, and ’lose‘ the autism diagnosis and be mainstreamed in typical classes by elementary school. 

Fact check: This is false

But, because of the passage of the Combating Autism Act of 2006, billions have been generated in profit from Autistic conversion therapy anyways. This is Autistic commodification. This is where everyone profits off of Autistics while denying us equal civil rights, and doing it at the expense of our health and well-being.

The article states that 60 to 75% of Autistic children are also mentally retarded, and smaller subset have Asperger’s Syndrome*.

Fact Check: This is False.

A report published on May 1, 2006 three months before this article published, states that more empirical evidence is needed before conclusions can be made about the percentage of the Autistic population that are learning disabled.  Later studies would show numbers in the 30% range. 

The spin on autism facts to cast doubt and flame parental fear was incredible for fundraising. This marketing of tragedy narrative would become an Autism Speaks hallmark. 

The new crusade is stated to have been built upon the decades-long work of pioneering autism organizations Autism Society of America (ASA), the National Alliance for Autism Research (NAAR), and Cure Autism Now (CAN). All of these organizations have been incredibly problematic for Autistic people, and were also parent-led organizations that didn’t include Autistics in leadership and meaningful positions. Autism Speaks would later merge with CAN and NAAR. 

Full article with timeline and an update on the Slatkins can be read here.


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