The Autism Speaks Controversy, Explained (Connecting the Dots: Autism Speaks, Research!America, FDA, Home Depot, American Cancer Society, Bailouts, Kappa Beta Phi, Occupy Wall Street, Sesame Street & Soros Funding, All Networking)
The
Mary Sue
Rachel
Ulatowski
Published: Dec 9, 2024 12:31 PM PST
https://www.themarysue.com/the-autism-speaks-controversy-explained/
Autism
Speaks Inc. is one of the largest and most well-known autism advocacy and
research organizations in the United States. However, in recent years, the
organization fell into notoriety, with many individuals inside and outside the
neurodivergent community warning others to avoid it.
On the
surface, Autism Speaks is a
nonprofit organization seeking to support individuals with autism and their
families, raise awareness for autism, and further research on autism and its
causes. Those who have taken a closer look at the organization, though, have
come to criticize it due to its problematic history and persistent
controversial attitude towards autism.
Autism
Speaks was first founded in 2005 by Bob and Suzanne Wright
after their grandson was
diagnosed with autism. The organization was kickstarted by a
donation of $25 million from Bernard Marcus, the co-founder of Home
Depot, who would
go on to serve on its Board of Directors. Autism Speaks grew quickly as it
merged with three other pre-existing Autism organizations, including the Autism
Coalition for Research
and Education, the National Alliance for Autism Research, and Cure Autism Now.
Autism
Speaks is an enormous and prominent organization that receives a lot of
attention and donations. While it has done much to raise awareness for autism,
its controversies give the organization a mixed legacy.
Autism
Speaks criticism explained
The
major reason Autism Speaks has received a high level of criticism is because of
how it views and frames autism. While it has changed its mission statement and
campaign in recent years, Autism Speaks was founded on the idea that autism is
a disease that needs to be cured. The
organization’s original mission statement reads:
We are
dedicated to funding global biomedical research into the causes, prevention,
treatments and a possible cure for autism. We strive to raise public awareness
about autism and its effects on individuals, families and society: and we work
to bring hope to all who deal with the hardships of this disorder.
Rather
than focusing on raising awareness and advocating for the acceptance of autism
in society, Autism Speaks treats it like a disease that needs to be cured or
eradicated. Such a mindset increases the stigma and discrimination against
people with autism as it presents the idea that there is something inherently
wrong with them that needs to be fixed.
However,
it has become increasingly clear that autism doesn’t need a cure. Society is
slowly moving away from defining autism as a disease or a medical condition.
Jodie Hare, a member of the autism community, provides
a strong definition of autism as “a neurotype that exists
as a result of natural biological variation.” When autism is properly
classified as a natural difference or variation instead of a disease or
deficit, it prioritizes acceptance of those with autism rather than efforts to
fix them. Many members of the autism community describe autism as a part of who
they are and have
reiterated the sentiment of wanting to be accepted, not cured.
Autism
Speaks has promoted fear of autism
In
addition to centering its focus on finding a cure for autism, Autism Speaks has
also explicitly contributed to the stigma and discrimination surrounding autism
by painting it as something to be feared. One of the most egregious things
Autism Speaks has done was release a horrific 2009
commercial titled “I Am Autism.” In the commercial, “Autism” is
an ominous narrator who makes chilling threats against families.
In the
commercial, “Autism” states, “I work faster than pediatric aids, cancer, and
diabetes combined, and if you’re happily married, I will make sure that your
marriage fails. Your money will fall into my hands, and I will bankrupt you for
my own self-gain.” The narrator, speaking to parents of autistic children, also
says that it derives pleasure “from your loneliness” and that it will “rob you
of your children and your dreams” and make sure you “wake up every day and
cry.”
The
video was removed after backlash, and Autism Speaks claims it is not part of
their current message and campaigns. However, the damage was done the moment
one of the leading organizations on autism released a video with horror film
vibes, which demonized autism, portrayed it as a destroyer of families and
livelihoods, and made it sound like something to be feared. A simple
apology written
on the FAQ section of their website and a promise of change
can’t undo the immense damage that Autism Speaks’ horrific ad did.
“I Am
Autism” wasn’t even the first time Autism Speaks’ media stirred controversy. In
2006, it sponsored the documentary Autism Every Day, which painted
autistic children as a burden and tragedy. The doc also included a statement
from Alison Singer, the former executive vice president of Autism Speaks, who
revealed she contemplated driving off a bridge with her
autistic daughter.
Autism
Speaks silences those with autism
What is
also very odd is that the organization is titled “Autism Speaks” but has a
history of not letting autism speak. From its inception to its present day,
Autism Speaks has been noticeably comprised of those who are not members of the
autism community. In 2020, the Autistic
Self Advocacy Network (ASAN) reported that of the 28 members of
Autism Speaks’ Board of Directors, only one belonged to the autism community.
Autism
representation has been scarce throughout Autism Speaks’ history. Additionally,
those from the autism community who did gain administrative roles in the
company didn’t come away with good things to say about it. John Elder Robison
was the first individual on the autism spectrum to be “hired” by Autism Speaks.
However, he recalled his role being greatly limited and regulated to merely
making recommendations. Contrary to what was portrayed in the media, he
didn’t consider himself an employee or spokesperson for the
organization. He eventually resigned from his position in 2013 after Autism
Speaks’ co-founder Barbara Wright made further egregious claims about autism
destroying families.
Additionally,
the ASAN
also reported that Autism Speaks lobbied heavily against an
amendment to the Autism CARES Act in 2014 that would have required that federal
boards like the Interagency Autism Coordinating Committee include members of
the ASD community to give them a greater voice in the policy decisions being
made about them. Needless to say, Autism Speaks has displayed a trend of not
wanting to let the autism community speak and advocate for itself.
Additional
Autism Speaks controversies
There
is also some skepticism about what happens to all the money Autism Speaks
receives. Tax forms have shown that Autism Speaks spends a significantly low
amount of its funds on actually providing resources for and aiding those with
autism and their families. Reports have suggested
that as little as 1—4% of its annual budget goes towards
providing Family Services and their provision of family grants.
Meanwhile,
a whopping 20% of their budget was dedicated to fundraising. Something
certainly doesn’t seem to add up when 20% of your budget goes towards
fundraising, but as little as 1% goes towards actual charitable activities and
funding. A large portion of their funds also goes towards research. In its
early years, the organization was researching a cure for autism. Now, some of
its research is focused on projects like MSSNG,
which seeks to create “the world’s largest whole genome sequencing database on
autism.” There are concerns that the research project
could be used to develop a prenatal test for autism, which may
be used to terminate pregnancies when autism is detected in the womb. Despite
the concerns about MSSNG, Autism Speaks has denied it
supports eugenics and states its genetics research is merely to
“help more autistic people access personalized care that will empower them to
lead their best lives.”
The
organization has also continued using funds to further its controversial applied
behavior analysis (ABA) therapy. ABA utilizes positive reinforcement
to encourage certain behaviors. However, it has received criticism for its
intensity and for
potentially encouraging masking, where autistic individuals
unconsciously or consciously try to suppress their autistic traits and
behaviors. Very little of Autism Speaks’ research is dedicated to helping or
improving the lives of those with autism.
Meanwhile,
Autism Speaks has also been found to pay its top executives over
$600,000 annually for compensation. There’s no set number for what a
nonprofit CEO’s wage should be, but most can agree that a yearly salary of
$600,000+ seems excessive.
Has
Autism Speaks changed?
Many of
Autism Speaks’ most damaging actions, such as trying to “cure” autism and its
“I Am Autism” video, took place years ago. In the years since, it has dropped
the word “cure” from its organization, rewritten its mission statement, and
claims to no longer associate with its earlier ideals. However, it’s clear
that, under the surface, the organization hasn’t changed much.
As
recently as 2019, Autism Speaks debuted
its controversial “100 Day Kit.” It used the autistic Muppet
Julia on Sesame Street to
promote the product, which led to the ASAN cutting ties with the show. The
100-Day Kit was meant to give direction and advice to parents of children who
have been recently diagnosed with autism. Instead, it compared autism to
leukemia and encouraged parents to mourn and grieve their child as if they had
died after receiving an autism diagnosis.
Additionally,
the organization continues to lack autistic voices on its board, spends its
funds questionably, and continues to adhere to the ideals of its founders,
which is that autism is a disease. While it stopped trying to “cure” autism, it
has instead switched to potentially trying to prevent those with autism from
being born. Historically, Autism Speaks has done much more to stigmatize autism
than it has done to advocate for acceptance or provide much-needed resources
for the ASD community and their families.
Connecting
the Dots:
Kenneth G. Langone was a co-founder for Home Depot Inc. is
a trustee at the Harlem Children's Zone and a director at
the Robin Hood Foundation.
George Soros was a benefactor for the Harlem Children's
Zone and the chairman for the Foundation to Promote Open
Society.
Foundation to Promote Open Society was a funder for the Harlem
Children's Zone and the Robin Hood Foundation.
Harlem
Children's Zone was a funder for the Robin Hood Foundation.
Michael R.
Bloomberg was a benefactor for the Harlem Children's Zone,
a donor for the Robin Hood Foundation and an advocate for the ONE
Campaign.
Susan McCue was
the founding president & CEO for the ONE Campaign and Harry
Reid’s chief of staff.
Howard G. Buffett is
a director at the ONE Campaign and Warren E.
Buffett’s son.
Susan A. Buffett is
a director at the ONE Campaign and Warren E. Buffett’s daughter.
Michelle Obama was
an advocate for the ONE Campaign.
ONE Campaign is
a partner with the International Rescue Committee.
Foundation to Promote Open Society was a funder for the International
Rescue Committee.
George Soros was the chairman for the Foundation to Promote
Open Society.
Andrew Robertson is
an overseer at the International Rescue Committee and a director
at Autism Speaks.
Susan Dentzer is
a director at the International Rescue Committee and a director
at Research!America.
Herbert Pardes is
a director at Research!America and a director at Autism
Speaks.
John Edward Porter is
the chair for Research!America and was an honorary trustee at
the Brookings Institution (think tank).
Foundation to Promote Open Society was a funder for the Brookings
Institution (think tank).
George Soros was the chairman for the Foundation to Promote
Open Society.
Mark B. McClellan was
a senior fellow at the Brookings Institution (think tank), a commissioner for the U.S. Food
and Drug Administration (FDA) and is a director at Research!America.
Gary M. Reedy is
a director at Research!America and the CEO for the American
Cancer Society.
John R. Seffrin is
a director at Research!America and was the CEO for the American
Cancer Society.
American
Cancer Society was a funder for the Bill, Hillary &
Chelsea Clinton Foundation.
Open Society Foundations was a funder for the Bill,
Hillary & Chelsea Clinton Foundation and the Carnegie
Endowment for International Peace (think tank).
George Soros is the founder & chairman for the Open
Society Foundations, a co-chair, national finance council for the Ready
PAC (Ready For Hillary) and was the chairman for the Foundation to
Promote Open Society.
Foundation to Promote Open Society was a funder for the Carnegie
Endowment for International Peace (think tank).
Donald Kennedy was
a trustee at the Carnegie Endowment for International Peace (think
tank) and a commissioner for the U.S. Food and Drug Administration
(FDA).
Margaret A.
Hamburg is the commissioner for the U.S. Food and Drug
Administration (FDA), the VP for the Nuclear Threat Initiative
(think tank) and David A. Hamburg’s daughter.
David A. Hamburg is
Margaret A. Hamburg’s father, an adviser for the Nuclear
Threat Initiative (think tank) and the president emeritus for
the Carnegie Corporation of New York.
Carnegie
Corporation of New York funded study that led to creation of the Sesame
Workshop and a funder for the Carnegie Endowment for
International Peace (think tank).
Carnegie
Endowment for International Peace (think tank) was a
funder for the Nuclear Threat Initiative (think tank).
Warren E. Buffett is
an adviser at the Nuclear Threat Initiative (think tank) and Susan
& Howard Buffett’s father.
Howard G. Buffett is
Warren E. Buffett’s son and a director at the ONE Campaign.
Susan A. Buffett is
Warren E. Buffett’s daughter and a director at the ONE
Campaign.
Michelle Obama was
an advocate for the ONE Campaign.
ONE Campaign is
a partner with the International Rescue Committee.
Foundation to Promote Open Society was a funder for the International
Rescue Committee.
George Soros was the chairman for the Foundation to Promote
Open Society.
Andrew Robertson is
an overseer at the International Rescue Committee and a director
at Autism Speaks.
Susan Dentzer is
a director at the International Rescue Committee and a director
at Research!America.
Herbert Pardes is
a director at Research!America and a director at Autism
Speaks.
John Edward Porter is
the chair for Research!America and was an honorary trustee at
the Brookings Institution (think tank).
Foundation to Promote Open Society was a funder for the Brookings
Institution (think tank).
George Soros was the chairman for the Foundation to
Promote Open Society.
Mark B. McClellan was
a senior fellow at the Brookings Institution (think tank), a
commissioner for the U.S. Food and Drug Administration (FDA) and is a
director at Research!America.
Gary M. Reedy is
a director at Research!America and the CEO for the American
Cancer Society.
John R. Seffrin is
a director at Research!America and was the CEO for the American
Cancer Society.
Daniel R.
Glickman (Dan) is a board of director for the American
Cancer Society Cancer Action Network (ACS CAN) and the executive director,
Congressional Program for the Aspen Institute (think tank).
Foundation to Promote Open Society was a funder for the Aspen
Institute (think tank), the Harlem Children's Zone and the Robin
Hood Foundation.
George Soros was the chairman for the Foundation to
Promote Open Society and a benefactor for the Harlem Children's
Zone.
Bloomberg
Family Foundation was a funder for the Aspen Institute (think
tank).
Michael R.
Bloomberg is the founder of the Bloomberg Family Foundation,
a member of the Kappa Beta Phi, was an advocate for the ONE Campaign,
a benefactor for the Harlem Children's Zone and a donor for
the Robin Hood Foundation.
Harlem
Children's Zone was a funder for the Robin Hood Foundation.
Kenneth G. Langone is a trustee at the Harlem Children's Zone,
a director at the Robin Hood Foundation, a member of the Kappa
Beta Phi and was a co-founder for Home Depot Inc.
Michael R.
Bloomberg was a benefactor for the Harlem Children's Zone,
a donor for the Robin Hood Foundation, an advocate for the ONE
Campaign, is the founder of the Bloomberg Family Foundation
and a member of the Kappa Beta Phi.
Richard S. Fuld
Jr. is a member of Kappa Beta Phi and was a director at
the Federal Reserve Bank of New York.
John C. Whitehead was
a member of Kappa Beta Phi and a chairman for the Federal
Reserve Bank of New York.
Bear
Stearns Companies Inc. provided March 2008 bailout for the Federal
Reserve Bank of New York.
James E. Cayne is
a member of Kappa Beta Phi and was a chairman for the Bear
Stearns Companies Inc. (Bailout Company).
Thomas M. Flexner is
a member of Kappa Beta Phi and was a vice chairman for the Bear
Stearns Companies Inc. (Bailout Company).
Alphonse
Fletcher Jr. is a member of Kappa Beta Phi and was a VP
for the Bear Stearns Companies Inc. (Bailout Company).
Thomas M. Flexner is
a member of Kappa Beta Phi and was a vice chairman for
the Bear Stearns Companies Inc. (Bailout Company).
Joe L. Roby is a
member of Kappa Beta Phi, was the chairman emeritus for the Credit
Suisse First Boston, a director at the New York Stock
Exchange and the president & CEO for Donaldson, Lufkin
& Jenrette.
Richard H.
Jenrette is a member of Kappa Beta Phi and was the
chairman & CEO for Donaldson, Lufkin & Jenrette.
Richard S.
Pechter is a member of Kappa Beta Phi and was a group
chairman for Donaldson, Lufkin & Jenrette.
Theodore P. Shen is
a member of Kappa Beta Phi and was a group chairman for Donaldson,
Lufkin & Jenrette.
Craig S. Sim is
a member of Kappa Beta Phi and was a managing director at Donaldson,
Lufkin & Jenrette.
John K. Castle is a member of Kappa Beta Phi and was the
president & CEO for Donaldson, Lufkin & Jenrette.
Lawrence G. Creel is
a member of Kappa Beta Phi and was a VP for Donaldson,
Lufkin & Jenrette.
Diana L. Taylor is
a member of Kappa Beta Phi, an investment banker for Donaldson,
Lufkin & Jenrette, Michael R. Bloomberg’s companion
and a director at the Brookfield Office Properties.
Brookfield
Office Properties is the owner of Zuccotti Park.
Zuccotti Park is
the staging area for 2011 NYC protests for Occupy Wall Street.
Occupy Wall
Street was the initial protest in the Occupy Movement.
Movement
Resource Group was a funder for the Occupy Movement.
Lear
Family Foundation was a donor for the Movement Resource Group
and a funder for the People for the American Way.
Norman Lear is
the president of the Lear Family Foundation and a director at
the People for the American Way.
Alec Baldwin was
the host for Up Late With Alec Baldwin and is a director
at People for the American Way.
Foundation to Promote Open Society was a funder for the People
for the American Way and the International Rescue Committee.
George Soros was the chairman for the Foundation
to Promote Open Society.
Up Late
With Alec Baldwin was an MSNBC program.
Harold E.
Ford Jr. is a political commentator at MSNBC and was an
overseer at the International Rescue Committee.
ONE Campaign is
a partner with the International Rescue Committee.
Foundation to Promote Open Society was a funder for the International
Rescue Committee.
George Soros was the chairman for the Foundation to
Promote Open Society.
Andrew Robertson is
an overseer at the International Rescue Committee and a director
at Autism Speaks.
Susan Dentzer is
a director at the International Rescue Committee and a director
at Research!America.
Herbert Pardes is
a director at Research!America and a director at Autism
Speaks.
John Edward Porter is
the chair for Research!America and was an honorary trustee at
the Brookings Institution (think tank).
Foundation to Promote Open Society was a funder for the Brookings
Institution (think tank).
George Soros was the chairman for the Foundation to Promote
Open Society.
Mark B. McClellan was
a senior fellow at the Brookings Institution (think tank), a
commissioner for the U.S. Food and Drug Administration (FDA) and is a
director at Research!America.
Gary M. Reedy is
a director at Research!America and the CEO for the American
Cancer Society.
John R. Seffrin is
a director at Research!America and was the CEO for the American
Cancer Society.
Resources:
Past Research
Planned
Giving? (Past Research on Autism Speaks)
Wednesday,
June 7, 2017
https://thesteadydrip.blogspot.com/2017/06/planned-giving.html
Smaller
Bites – Home Depot Inc. (Connecting the Dots: Home
Depot Inc., Lehman Brothers Holdings Inc. & The Soros Funded Robin Hood
Foundation & Harlem Children's Zone, All Networking) (Past Research on Home Depot Inc.)
Friday,
November 11, 2022
https://thesteadydrip.blogspot.com/2022/11/smaller-bites-home-depot-inc-connecting.html
Detective
Says NYPD Has ‘Enough to Make Arrest’ after HBO Star Accuses Harvey Weinstein
of Rape (Past Research on the Harlem Children's
Zone)
Friday,
November 3, 2017
https://thesteadydrip.blogspot.com/2017/11/detective-says-nypd-has-enough-to-make.html
Most
Post-WWII German Justice Officials Were Former Nazis: Study (Past Research on the ONE Campaign)
Monday,
October 10, 2016
https://thesteadydrip.blogspot.com/2016/10/most-post-wwii-german-justice-officials.html
Planned
Parenthood Privately Funded by Sex Toy Industry, Publicly Funded by Americans (Past Research on the ONE Campaign, Susan & Howard
Buffett)
Thursday,
August 24, 2017
https://thesteadydrip.blogspot.com/2017/08/planned-parenthood-privately-funded-by.html
FDA
Fails to Protect Americans from Dangerous Drugs and Unsafe Foods (Past Research on the FDA)
Sunday,
May 10, 2015
https://thesteadydrip.blogspot.com/2015/05/fda-fails-to-protect-americans-from.html
American
Cancer Society (Past Research on the American
Cancer Society)
Monday,
September 12, 2016
https://thesteadydrip.blogspot.com/2016/09/american-cancer-society.html
American
Cancer Society Memorial and Honor Giving (Past
Research on the American Cancer Society)
Thursday,
May 14, 2015
https://thesteadydrip.blogspot.com/2015/05/american-cancer-society-memorial-and.html
Jeb
Bush: Michael Bloomberg A ‘Good Man’ And A ’Patriot’ (Past
Research on the Bloomberg Family Foundation)
Sunday,
January 24, 2016
https://thesteadydrip.blogspot.com/2016/01/jeb-bush-michael-bloomberg-good-man-and.html
Ken
Langone: ‘All in’ for Trump, Can Beat Hillary Clinton, ‘He’ll do a Hell of a
Good Job’ (Researcher’s note: Ken Langone’s Kappa Beta Phi involved in Bailout
Companies) (Past Research on Kappa Beta Phi)
Tuesday,
May 10, 2016
https://thesteadydrip.blogspot.com/2016/05/ken-langone-all-in-for-trump-can-beat.html
Occupy
Wall Street (Past Research on Occupy Wall Street)
Sunday,
March 15, 2015
https://thesteadydrip.blogspot.com/2015/03/occupy-wall-street.html
‘Sesame
Street’ Was Always Political – The New York Times (Connecting the Dots: Sesame
Street, CNN, FDA, Soros, Pfizer and Johnson & Johnson) (Past Research on Sesame Street)
Sunday,
June 19, 2022
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