Wake. Bake. Caffeinate. Episode 3
Autism Speaks & The “Cure”
Trigger Warning: Eugenics, Filicide, Murder/Suicide, functioning labels, person-first language, ableism, abuse, ABA, othering, stigma, Bob & Suzanne Wright, Harry & Laura Slatkin, Alison Singer and more.
Community News including some thoughts via Autistic Science Person on Color the Spectrum event and the NEXT for Autism organization founded by Harry and Laura Slatkin. Yes, I chimed in too. This was an incredible step forward, and my hope that Autistics can continue to be heard.
- 2006: The letter Alison Singer wrote titled, “Cure Is Not A Four-Letter Word” and Autism Speaks released a press release to announce it.
- Media coverage, public service announcement of autism prevalence Cure Autism Now and Autism Speaks and talking points, plus Autistic advocates protesting Autism Speaks interspersed.
- Going Down The Rabbit Hole: Autism Speaks & The “Cure” – Newsweek reported about the Autistic backlash at Autism Speaks & Google project, MSSNG. This wasn’t the first time Autistics protested that partnership and project ….
Plus music by Bill Reiland including his versions of “Roll Me Up And Smoke Me When I Die” and “I Still Haven’t Found What I’m Looking For.”
Cure is not a four-letter word
Senior Vice President, Autism Speaks circa 2006
My daughter Lauren-a typically developing child- has a wonderful, dynamic friend named Haley who has been diagnosed with Asperger Syndrome. While Haley is the best reader in the second grade and can argue circles around the school principal, it is gut-wrenching to watch her struggle in school every day. She cannot keep friends and is often all alone on the playground during recess. She is prone to violent outbursts and is generally unable to function in her classroom without one to one support. Sometimes the kids, and quite honestly her teacher, seem afraid of her. Her mother suffers every day along with Haley, as she wards off the pressure to administer medications that might calm the unruly, disruptive behaviors, but might also extinguish the brilliant light that has helped Haley excel academically. Haley has a personality and a mind all her own; if she were she my daughter I would be similarly loathe to squash it. Haley needs a lot of support and understanding, but she doesn’t need to be cured.
Lauren’s older sister, Jodie, shares the same DSM-IV diagnosis as Haley, but Jodie has classic autism, which falls on the other end of the autism spectrum from Asperger Syndrome. While I have often marveled at Haley’s rhetorical skills and quick wit, Jodie struggles to simply string two words together with any communicative intent. Many days it is hard to believe that the challenges Haley faces with regard to her Asperger Syndrome and those Jodie struggles with are related under the same DSM-IV diagnosis. At one end of the autism spectrum we often find lower functioning persons like my daughter who cannot speak, have violent tantrums and can be self injurious, while at the other end we have persons who struggle with very significant, but very different, predominantly social issues.
Too Wide a Spectrum?
I’m sure a lot of thought went into the decision to include Asperger Syndrome as one of the autism spectrum disorders. On a scholarly level I understand that Asperger Syndrome is an expression of the extreme social deficits that characterize all those on the spectrum. Also, I am certainly glad that persons with Asperger Syndrome are becoming able to access support and services if they feel they need them. But the “differing abilities” of persons with Asperger Syndrome are nothing like my daughter’s autism. When we at Autism Speaks use the word cure, we are most often focused on the people at the lower end of the spectrum. I have not met a person with Asperger Syndrome who seemed anything like my daughter. None of these persons, however, has ever met my daughter because it is so hard to take her out of the house. It is hard to consider her “differently abled” because she is not “abled”. She is sweet and loving and works harder than anyone I know, but she does not have any areas of strengths that I fear squashing through medication, intervention or cure. Without her medication, she cries almost constantly during the day and can’t sleep at night. She has frequent seizures. She cannot tell me when she is in pain, or where it hurts. She puts everything in her mouth unless it is food. At age 9, her favorite game is still “this little piggy”. Thankfully, recently she has learned to use words to name items she wants and needs, and this has dramatically reduced her violent tantrums. She has benefited greatly from behavioral therapy and from risperdal and depakote but she has a long long way to go. She has a neurological disorder that responds to antipsychotic medication. Her pain is heartbreaking and I pray every day for a cure. I do not use the word cure to insult other people on the spectrum. I use it because it accurately conveys my hope that one day, her constant struggles will end and she will know a different, pain-free life.
Use of the word cure holds particular meaning to parents whose children suffer regressive autism. These parents I often feel suffer the most, as they had a glimpse of their children before autism. These parents seek a cure because they remember the child they had and want him back. Autism Speaks’ constituency tends to be dominated by parents of lower functioning children because many parents of children who are diagnosed as high functioning enough to be mainstreamed do not want to be associated with autism because of the stigma that is still attached to the disorder and for fear that their children will suffer from the label. Thus, our community does tend to be dominated by the faction of parents in search of a cure.
For this reason, much of our community struggles with the portrayal of basketball star Jason McElwain as the poster child for autism. My daughter can’t carry on an impromptu conversation with the press the way Jason did. She can’t make a basket. She can’t throw the ball. She couldn’t sit still to watch the Teen Choice Awards, and I daresay she’ll probably never receive one. Jason is a hero for all he has accomplished, but the kids who struggle to learn to count, use a fork and say “I love you” are equally heroic.
Asperger Spectrum Disorder?
A good deal of the furor over the word cure may be the result of confusing “autism” with “autism spectrum disorder.” There are five diseases that fall under the autism spectrum disorder umbrella, one of which is autism. One of the five, Rett’s Syndrome, has its own advocacy community. The gene that triggers Rett’s has been identified and yet the Retts community does not protest when we say we do not yet know the genes that trigger autism, because they are aware we are speaking of autism and not all of the autism spectrum disorders. When Asperger Syndrome groups use the term “Asperger” it is clear what they are talking about. When autism organizations use the word autism it is often unclear whether we are talking about autism or the entire spectrum, including Asperger Syndrome. Most of the time, we are talking about autism.
But for whatever reason, all five disorders are placed together under one diagnosis because the similarities between them are greater than the differences. Perhaps we could take a lesson from other disease advocacy organizations. There are many different diseases that fall under the umbrella “cancer”, but no one argues that the intervention for leukemia should be the same as for brain cancer. No one says that bone marrow research is insulting because it doesn’t serve the needs of persons with brain tumors.
Hope is not a four-letter word
At Autism Speaks, we are committed to bringing a voice to all who struggle with any type of autism spectrum disorder. Our goal is to do this by funding science that will find new treatments, and yes, ultimately, we hope, a cure for autism. In fact, in our last round of grants, we funded several projects focused on Asperger Syndrome and high functioning autism. We appreciate that persons with Asperger Syndrome have different needs than persons with lower functioning autism but we all need more options and new opportunities. Our hope is not to alienate but to unite in order to bring greater awareness of autism spectrum disorders to the public at large and thereby greatly increase public funding and private donations for treatment and research, increase access to services and reduce the stigma that is still associated with autism spectrum disorders. By shining a strong spotlight on autism spectrum disorders we can create a brighter future for all those who are affected.
Going Down The Rabbit Hole: Autism Speaks & The “Cure” pt. 1
Going Down The Rabbit Hole: Autism Speaks & The Cure pt. 2
MSSNG is touted as groundbreaking collaboration between Autism Speaks, Google and the research community to create the world’s largest genomic database on autism. Their goal is to provide the best resources to enable the identification of many subtypes of autism, which may lead to better diagnostics, as well as personalized and more accurate treatments.
This isn’t the first time Autistic’s have protested this partnership and project. Autism Speaks announced their partnership with Google Cloud in December 2014. MSSNG was promoted as a ‘significant milestone in advancing autism research.’ The goal was to sequence the complete genomes of 10,000 Autistics and their families by early 2016.
The hope was the project could lead to a breakthrough in identifying the causes and subtypes of autism. Autism Speaks released a statement on September 1, 2015 that boasted the MSSNG portal also included collaboration with The Centre for Applied Genomics at the Hospital for Sick Children, in Toronto, and Google to analyze and store MSSG’s data. At the time of the launch, they had more than 60 researchers at 26 institutions on four continents approved to access the data.
“The development, open sharing and collaborative exploration of massive databases of genomic information, like those already available through MSSNG, will shape the future of autism research more than any other specific area of scientific investment,” said Dr. Robert Ring, chief science officer at Autism Speaks.
Autism Speaks published a press release on December 9, 2014 about the partnership.
“Millions of people living with autism today need answers. The MSSNG project (pronounced missing) is the search for those answers. And we’re going to find them,” said Liz Feld, president of Autism Speaks.
The press release also prompted their Autism Community to participate in a Twitter campaign with instructions to remove the vowels from their screen names. This was to be symbolic.
The vowels were omitted to represent the ‘missing pieces of the autism puzzle that researchers hope to find.’ It was also meant to be symbolic of the missing information (or questions) they had about autism and the causes of autism. The campaign used the #MSSNG tag.
In response, the Autistic Self Advocacy Network (ASAN) put out a call to Autistics to protest the Autism Speaks Twitter campaign with ‘We are #NotMssng!’ One of the example tweets stated: “How about research into supports and services instead of elimination and cure? #NotMssng #Mssng” This protest was an attempt to be heard by Google, and have Autistic lives respected and valued by the company. Google ignored Autistic people and, once again, the Autism Community roared over the voices of Autistic Community.
The MSSNG project was originally known as the Ten Thousand Genomes Project or AUT10K.
As stated in an Autism Speaks press release June 10, 2014:
“Autism Speaks, the world’s leading autism science and advocacy organization, today announced a collaboration with Google to develop the world’s largest database of genomic sequence information on individuals with autism spectrum disorder (ASD) and their family members.
“The collaboration represents a significant milestone in advancing genomic research of the disorder, and could lead to breakthroughs into the causes, subtypes and better diagnosis and treatment for ASD. The Autism Speaks Ten Thousand Genomes Program (AUT10K) is valued at $50 million dollars.”
The name AUT10K shocked and angered many Autistics. Either Autism Speaks made a giant blunder due to their lack of connection to the Autistic Community, or they knew exactly what they were doing when they named their genetics project so similarly to Aktion T4, a euthanasia program authorized by Hitler to exterminate disabled children and people. At least 300,000 disabled children were murdered between 1939 and 1945.
Nazi’s held the belief that those who could not work were useless eaters. They were Life Unworthy of Life, and a burden on their communities. This ‘burden’ of people would make Germany weak because of the expense to care for them. Parents were instructed to send their disabled child to an institution. Later they’d receive notice that their child died from ‘natural causes.’ These were not natural deaths. These children died by gassing, injection, or starvation and their death was considered a ‘mercy killing.’ Essentially, the children were considered better off dead than disabled.
Hans Asperger, a pioneer of Autism research, was the first person to use the word ‘autistic’ in relation to four children in his practice back in 1944. While his research with autism is now known — what we also know now, is that Asperger also referred children to Spiegelgrund knowing the children would be killed. Before death, some of these children would be used cruelly as experiments. At least 789 children died at this Vienna children’s clinic.
The mass extermination of disabled children and people was the predecessor of the Nazi’s ‘Final Solution.’ The ‘Final Solution’ was the Nazi policy of exterminating European Jews and resulted the holocaust with 6 million being murdered. Autistic people’s concerns about the program and name were minimized, brushed off or ignored. However, by December of 2014 Autism Speaks no longer referred tot he project as AUT10K. Instead they called it MSSNG.
Now, it’s well known in the Autistic community, the ‘cure’ for autism is the same ‘cure’ society has for Down Syndrome. This ‘cure’ is the prevention of birth based on ‘autism risk’ during pregnancy. The other ‘cure’ or ‘recovery’ Autism Speaks refers to is Applied Behavioral Analysis (ABA), also known as Autistic Conversion Therapy. Yes, this is also known as Gay conversion therapy. ABA is incredibly abusive and ‘recovery’ is a very profitable myth that Autistics are currently fighting worldwide.
Suzanne Wright, one of the founders of Autism Speaks, had spoke about “Autism as a burden the world just couldn’t afford” in the media and at speeches many times. She spoke to an Autism Epidemic and ‘generations of children being left behind. No country can afford 2% of its boys … that’s not going to make it. We have to do something about it.” Her goal was to ‘cure’ autism within a generation.
Jon Shestack, a founder of Cure Autism Now (CAN merged into Autism Speaks in 2007) said this of the Wrights on the first anniversary of Autism Speaks, “They’ve raised an unheard amount of money, and I believe they will provide leadership for years that will make autism a household word, and then, ultimately, make autism a word we only see in history books.” The autism ‘cure’ was a goal that has been stated by the founders of Autism Speaks, and the founders of the organizations they merged into Autism Speaks, for decades.
So recently, when Tom Frazier, chief science officer of Autism Speaks, told Newsweek that Autistics aren’t understanding the MSSNG project correctly — he was boldly disingenuous. Frazier completely skipped over the ‘cure’ history, minimized Autistics concerns, ignored questions, bypassed transparency and stuck to the Autism Speaks talking points. This is typical of Autism Speaks board members and representatives. Frazier also dismissed Autistic people’s concerns about gene editing with CRISPR.
“There’s this sort of misconception that somehow the MSSNG Project is about finding an autism gene and then doing gene therapy to get rid of autism. That is a very, very bad misconception, I would say, of the project.
“The project really is about actually trying to understand the biology of people with autism so that we can identify the kinds of interventions and supports that they might need,” he said.
That Frazier refers to Autistics as having a ‘bad misconception of the project’ and dismisses the backlash is outright ludicrous. Even in 2021, Autism Speaks still doesn’t understand that Autistics, not our Non-Autistic parents, are the majority stakeholders here. Our questions matter. This quote, like many others from Autism Speaks professionals, feels dismissive and dishonest in it’s portrayal of Autistics.
The Newsweek article also states:
“The first phase of MSSNG is to complete and make data available from the whole genome sequencing of blood DNA of 10,000 individuals from families from the Autism Genetic Research Exchange (AGRE) repository, or from other well-phenotyped cohorts entering into this study. “
So, let’s take a dive into Autistic History, and get a closer look at this DNA repository mentioned by Frazier.
The Autism Genetic Research Exchange (AGRE) was a project of the organization, Cure Autism Now (CAN) that launched in 1997. Founders Jon Shestack, a film producer, and his wife, Portia Iverson, founded CAN in 1995. They are parents of an Autistic and authors of the book, “Strange Son.”
Cure Autism Now was comprised of parents, doctors and scientists focused on research to prevent, treat and cure autism. At one point, the National Alliance for Autism Research (NAAR) invited Shestack and Iverson to join their board. The offer was declined. The couple wasn’t patient with staying with the scientific establishment.
The National Alliance for Autism Research (NAAR) was founded in 1994 by a small group of parents, which included two psychiatrists, a lawyer, a CPA and a chemistry professor. NAAR committed over $20 million to autism research projects, fellowships and collaborative programs, and established and funded the Autism Tissue Program, a post-Morten brain tissue donation program. NAAR also established the High Risk Baby Sibling Autism Research Project, the NAAR Genome Project, and published the newsletter, Narrative.
In 2006, NAAR merged with Autism Speaks.
In 1997, Shestack and Iverson went establish the Autism Genetic Resource Exchange (AGRE) . Surprisingly, their launch was successful even with the push back from scientists who questioned Cure Autism Now’s methods, and ability to complete the project with merit.
Cure Autism Now ultimately contributed over $39 million for research grants and programs. Those included: Autism Genetic Resource Exchange (AGRE), Autism Treatment Network (ATN), Clinical Trials Network (CTN), and Innovative Technology for Autism.
Autism Speaks and CAN completed their merger in 2007.
The statement given by Autism Speaks’ Tom Frazier in the 2021 Newsweek article glosses right over the long history Autism Speaks has with Autistics protesting their mission to ‘cure’ autism. The double-speak on the ‘cure’ started decades ago between non-Autistic parents and Autistics.
On May 17, 2006 the conflict erupted to such a degree that Autism Speaks published a press release titled: Autism Speaks and Grasp to Exchange “Articles of Understanding.”
Grasp is short for Global Regional Asperger Syndrome Partnership.
Alison Tepper Singer, Senior Vice President of Autism Speaks, and Michael John Carley, Executive Director of GRASP, will each write an article and publish it sometime that spring the press release stated.
The article that Singer published was titled: Cure Is Not A Four-Letter Word.
Yes, from the title of the essay to the end, Singer’s writing is ableist, dehumanizing, minimizing and just horrific mess of doubles-speak and gaslight. Parts of it felt downright condescending, and included some lengthy, gnarled logic for Singer’s definition of the word ‘cure’ and how that doesn’t include all Autistics — just the ones like her daughter.
“Use of the word cure holds particular meaning to parents whose children suffer regressive autism. These parents I often feel suffer the most, as they had a glimpse of their children before autism. These parents seek a cure because they remember the child they had and want him back.”
“But the “differing abilities” of persons with Asperger Syndrome are nothing like my daughter’s autism. When we at Autism Speaks use the word cure, we are most often focused on the people at the lower end of the spectrum.
I have not met a person with Asperger Syndrome who seemed anything like my daughter. None of these persons, however, has ever met my daughter because it is so hard to take her out of the house.
Singer is well known in the Autistic community as one of the Autism Speaks affiliated parents that spoke of filicide of her Autistic child in a ‘documentary.’ She described a murder/suicide scenario that she almost completed but didn’t because she had a typical daughter at home to raise still. Her Autistic and disabled daughter was in the room listening when this ‘honest’ confession was shared.
Singer continued the description of her Autistic daughter, “She is sweet and loving and works harder than anyone I know, but she does not have any areas of strengths that I fear squashing through medication, intervention or cure.”
“A good deal of the furor over the word cure may be the result of confusing “autism” with “autism spectrum disorder. …”
“When autism organizations use the word autism it is often unclear whether we are talking about autism or the entire spectrum, including Asperger Syndrome. Most of the time, we are talking about autism.
“Autism Speaks’ constituency tends to be dominated by parents of lower functioning children because many parents of children who are diagnosed as high functioning enough to be mainstreamed do not want to be associated with autism because of the stigma that is still attached to the disorder and for fear that their children will suffer from the label. Thus, our community does tend to be dominated by the faction of parents in search of a cure.”
Interesting mish-mash of what ‘cure’ means to Singer. I guess Singer and the others at Autism Speaks didn’t compare notes before she published her statement.
The bio Included on the “Articles of Understanding” press release by Autism Speaks,states: Autism Speaks and the National Alliance for Autism Research (NAAR) recently combined operations, bringing together two of the leading organizations dedicated to accelerating and funding biomedical research into the causes, prevention, treatments and cure for autism spectrum disorders. …
That clearly states “cure autism spectrum disorders.”
Singer ends her essay with a segment titled: Hope Is Not A Four-Letter Word.
Autism Speaks announced an $8.4 million grant from the National Institutes of Health (NIH) on October 3, 2007. This grant would create a new Center for Genomic and Phenomic Studies in Autism at USC, and include scientists from some very prestigious locations including the UC Mind Institute.
The protest to Autism Speaks mission to ‘cure’ autism by Autistics waged on until 2016, when Autism Speaks finally removed it from their mission statement, though other than marketing language, not much else changed.
In 2017, investigative reporter, Lilia Luciano, of ABC 10 reported on Autistic Civil Rights Movement and Autism Speaks. In that interview she spoke to people at UC Mind Institute and at Spark!,as well as, Autistic adults from Fresno, California.
In the interview, Anne Christensen, an Autistic advocate, said:
Lilia Luciano took the concern about the ‘autism cure’ to UC Mind Institute and asked some questions.
“The MIND Institute is taking part in Spark, the largest, most ambitious study ever done on Autism. The goal is to enroll 50,000 families who have a son or daughter in the spectrum within three years in order to better understand the genetics of the disorder.
I asked Dr. Abbeduto about the concern that genetic testing could open the door for parents to terminate a pregnancy.”
Dr. Len Abbeduto, Director of the UC Davis MIND institute:
“Well, I think it shows that in science is not a value neutral right?” he said. “Everything we discover has the potential to change how people behave.”
“I think a lot of what we can do is to give people choices about how they live their lives and ultimately their choice for how they raise their children,” he added. “I don’t think there’s a path we shouldn’t go down because it might create controversy.”
The UC Mind Institute was created by parent demanding that scientists look at other causes of autism. The institutes largest contribution came from California State Legislature, which provided $34 million.
UC Mind Institute published a press release in January 2021 about researchers have identified several partners of maternal autoantibodies highly associated with the diagnosis and severity of autism.
ScienceAlert.com published the news under the headline: Researchers Claim 100% Accuracy Predicting Autism Risk Factors in Mom’s Blood
“We can envision that a woman could have a blood test for these antibodies prior to getting pregnant. If she had them, she’d know she would be at very high risk of having a child with autism. If not, she has a 43% lower chance of having a child with autism as MAR autism is ruled out,” Van de Water said.
“This study is a big deal in terms of early risk assessment for autism, and we’re hoping that this technology will become something that will be clinically useful in the future.”
The article states:
“Combined with other recent studies providing solid foundations for highly accurate ASD diagnostic tools, we might expect a future where parents can be well prepared for the possibility of raising an infant with autism. Of course, the decision on whether to proceed with trying for a child would then be up to the family involved.”
And that’s just the start of this rabbit hole. There’s so much more – …
Autism Speaks announced an $8.4 million grant from the National Institutes of Health (NIH) on October 3, 2007. This grant would create a new Center for Genomic and Phenomic Studies in Autism at USC, and include scientists from some prestigious locations including UC Mind Institute.
Increased awareness, increased suicide rates: A 20‐year study of suicide death in a statewide autism population – Kirby – 2019 – Autism Research – Wiley Online Library