This is the most popular and well known charity but yet the most toxic. I do not agree with anything written in this post. I am stating the history and why they made my boycott list.
Most autistics downright hate Autism Speaks. Most that I have talked to have not have personal dealings with them like I have. I have been asked multiple times to tell my story, so here it is.
My first autie diagnosis was when my nine year old was three. I brought him to the neurologist I was told about by many people. He was very good with him. He suggested ABA but did not push and he respected my position on it. I appreciated that. At this point I started to suspect I might be autistic too. He was too similar to me and I did not believe it was a coincidence.
He gave me the number to Autism Speaks and told me to give them a call. It made perfect sense. Everyone has heard of them and they are supposed to be an advocacy agency.
I called them and they told me that our local chapter was going to be at the local disability fair. I was excited because I would get some information. I went to the fair. I got information about different services that my son would be eligible for. Nothing for adults. I thought that was weird. Then I get to the Autism Speaks table. My son waves hello. He was not speaking at the time. I mention that I was looking into getting evaluated because I suspected I am autistic. She asked me how many children I had. I said 3 (it as three at the time).
What she said to me next was shocking. “YOU SHOULD NOT HAVE BRED! We do not need any more people with autism. What is wrong with you?”
I took my son out of the fair. I was really distraught. I even tried calling the agency number again. No one wanted to hear from me. They just ignored this ever happened.
From that day forward I have a personal grudge against Autism Speaks and everything they stand for.
It was founded by Bob Wright in Febuary of 2005. He was the Vice Chairman of General Electric. He formed this organization soon after his grandson was diagnosed.
In 2005, Bernie Marcus, the Co-Founder of Home Depot, donated $25 Million to launch Autism Speaks. He has been on the board ever since.
In April 2010, it named Yoko Ono its first “global autism ambassador.”
Since forming the organization, they have merged with three other autism organizations. They did this in order to raise millions of dollars in autism research.
On May 1, 2015 Bob Wright resigned as chairman. Brian Kelly gladly took over. He was previously the chairman for audit and family services for the organization. Bob Wright is on the board as a co founder.
Co-founder, Suzzanne Wright took a leave of absense in November 2015 when she was diagnosed with pancreatic cancer. She passed away on July 29, 2016.
In 2016, Autism Speaks raised $47.5 million. This was an 18% drop from the previous year. They attributted the drop in revenue to changes in funding to their MSSNG research program and declines in walk participation.
What is Autism Speaks?
Autism Speaks is an organization that has been a source of funding to find the cause and treatments. They had curing autism as part of their mission statement until 2016. They made a press release stating they were moving away from that. I did not believe this and neither did most of the Autistic community.
Autism speaks have raised public awareness for research, raised funds for research, and lobbied Congress.
The main areas of research Autism Speaks funds are:
- Etiology includes genetic and environmental factors that may cause autism. This research includes searches for autism susceptibility genes, animal models for autism, environmental toxins, and maternal viral infections.
- Biology studies cells, the brain, and the body. This focuses on brain development and includes the Autism Tissue Program discussed further below.
- Diagnosis includes epidemiology, early diagnosis, and biomarkers.
- Autism therapies include medication, behavioral (IE ABA), and psychological interventions. It includes treatments for co-occurring medical conditions in children which are unrelated to autism, such as sleep disorders and gastrointestinal disorders that may hinder behavioral interventions, along with treatments for older individuals, and complimentary and alternative medicine (quack treatments, also called integrative medicine).
Autism Speaks funds the Autism Genetic Resource Exchange. This is a DNA registry of genotype of phenotype information that is available to autism researchers world wide. AGRE was established in the 1990’s by an organization called Cure Autism Now.
Autism Speaks also funds the Autism Tissue Program. It is a network of researchers who manage and distribute brain tissues. It is said that these tissues are rare and vital to autism research for the cause.
Autism Speaks supports the Clinical Trials Network. It’s primary focus is new pharmacological treatments. They also support the Toddler Treatment Network. They develop new interventions for toddlers.
Since 2014, Google has partnered with Autism Speaks in a project called MSSNG. It is pronounced “missing.” It was previously called Autism Speaks 10k Genome Program. This is an open source research platform to collect and study DNA of 10,000 families that have autistic family members. Thier goal is to create a data base of sequenced genomic information of autism which would be run on Google’s genome cloud based genome data base, Google Genomics. In December 2014, they announced they would permit world wide access to the research for further genome analysis.
The walk for Autism research program holds a walk annually. This is held on Long Island, NY. In 2006 they raised $2 million. They have over 20,000 participants and raise.
The Ad Council launched a campaign highlighting the importance of early detection.
In Feburary 2005, The Today Show aired a week long series highlighting autism research and treatment.
In December of 2007, Susanne Wright me twith Sheikha Moza of Qatar to pressure the country to sponsor a United Nations Resolution recognizing “World Autism Awareness Day.” They introduced the resolution and it was passed and adopted without a vote by the United Nations General Assembly, primarily as a supplement to previous United Nations initiatives to improve human rights.
Wright helped launch Autism Speaks Light it up Blue campaign and the annual Focus on Autism Event.
“For the millions of Americans whose lives are affected by autism, today is a day of hope. The Combating Autism Act of 2006 will increase public awareness about this disorder and provide enhanced federal support for autism research and treatment. By creating a national education program for doctors and the public about autism, this legislation will help more people recognize the symptoms of autism. This will lead to early identification and intervention, which is critical for children with autism. I am proud to sign this bill into law and confident that it will serve as an important foundation for our Nation’s efforts to find a cure for autism.”
– President George W. Bush, 12/19/06
On December 27, 2012, the Combating Autism Reauthorization Act was passed. This act reauthorized all funding from the Combatting Autism Act of 2006.
On September 30, 2019 the Autism Cares Act was passed. The name was changed due to efforts made by the Autistic Self Advocacy Network. It was a small change but it made a big impact.
On May 17, 2021 Governor Roy Cooper of North Carolina signed the the Autism Accessibility Bill into law. This removes the requirement that BCBAers working in NC be supervised by licensed psychologists. They removed this to make the state “more attractive to behavior analysts.” Not only are they abusing children, they won’t have the supervision of psychologists to make sure things don’t get too far out of hand. ABA itself is worse but this is open season on autistic children in North Carolina. The state behavior analyst board will only consist of 5 people for the entire state. I would hate to be an autistic in North Carolina right now.
Kyle Robinson who attended the signing said,”We know firsthand the struggles families face seeking ABA services in North Carolina. Our family traveled across the state for over two years in order to find the services Samuel needed. This will allow more kids like Samuel to receive the help they need to reach their full potential. Thank you Autism Speaks for your tireless efforts over the past several years in making this possible for families in North Carolina.”
Light it Up Blue
It is observed every year on April 2nd. It is dedicated to raising awareness of autism. It is associated with Autism Speaks and it is intended to raise international awareness of autism in support of World Autism Awareness Day and Autism Awareness Month in the United States. The blue stands for mostly affecting boys, which is false. Girls normally fell through the cracks because it presents differently.
Landmarks all over the world participate. On April 2nd, 2010 the third annual Autism Awareness Day was celebrated at the New York Stock Exchange where Autism Speaks volunteers and supporters opened the day by ringing the NYSE opening bell.
In 2011, the White House declined to light it up blue but in 2017 Donald Trump did fulfull the promise made to Suzanne Wright and participated that year.
The View of Autism as a Disease
Autism Speaks advocacy has been based on the belief that autism is a disease. In January of 2008, an autistic blogger was very upset with this portrayal. They created a critical parody website called “Getting the truth out.” It was later taken down in response to legal demands from Autism Speaks to stop using its name and logo without permission. They said it could confuse people looking for information about autism. New parody sites were later created by Gareth Nelson, founder of Aspies for Freedom.
In September of 2009, Autism Speaks launched the commercial called “I am Autism.”
Steve Silberman (author of Neurotribes) wrote an editorial in the Los Angeles Times criticizing the organization. In response to this, the president at the time, Liz Feld, stated that one third of autistic people also have a seizure disorder , half suffer serious digestive complications, 50 percent elope and more than 30 percent are non verbal. She also discussed Autism Speaks legal achievements in providing families more financial assistance and funding.
Position on Vaccines
Autism Speaks previously had a high priority research into the now discredited claim that vaccines cause autism.
Allison Singer, the senior executive of Autism Speaks, resigned in January of 2009 in order to not vote to commit money to new studies on autism and vaccines. She had previously voted against this. There are numerous scientific studies that disprove it and they need to move on.
In March of 2010, they said it would not completely abandon the idea that vaccines could cause autism and that it would support research to determine whether subsets of individuals might be at an increased risk.
In August of 2014, Autism Speaks said “We strongly encourage parents to have thier children vaccinated for protection against serious disease. We recognize that some parents still have concerns about vaccines, particularly if they have a child or relative with autism. We urge them to find a health practitiioner that will help them ensure the well being of their child.”
In 2017 Autism Speaks said that each family has a unique experience with an autism diagnosis, and for some of it corresponds with the timing of their child’s vaccinations. At the same time, scientists have conducted extensive research over the last two decades to determine whether there is any link between childhood vaccines and autism. The results of this research is clear. Vaccines do not cause autism.
In 2009, Disability Scoop questioned Autism Speaks about its chief science officer, Geri Dawson, who received $669,751 in compensation in 2008, including $269,721 to relocate her family from Washington to North Carolina. Autism Speaks responded that Dawson’s compensation was mid-range for executives with similar positions in the nonprofit health sector, and that Dawson’s move benefited Autism Speaks because she would be more accessible to its offices, science divisions, government health agencies in Washington, D.C., and her new position at the University of North Carolina at Chapel Hill Compared to other autism-focused nonprofit organizations, Autism Speaks spends a smaller percentage of its revenue on furthering its mission. According to a report by The Daily Beast, 70.9% of Autism Speaks’s revenue is devoted to directly furthering its mission, compared to 79.8% of Autistics Self-Advocacy Network’s revenue and 91.5% of Autism Science Foundation’s revenue.
In 2012, Autism Speaks spent $2,252,334 on compensation for current officers, directors, trustees, and key employees, which The Daily Beast portrayed as controversial. Autism Speaks’s former president Mark Roithmayr had a salary of $436,314 in 2012, and Chief Science Officer Geraldine Dawson earned $465,671.
In 2016, Autism Speaks spent $2,375,591 on officers, directors, trustees, and key employees, including $110,000 of bonus incentive compensation. Autism Speaks paid a $336,843 severance payment to Robert King, a $175,000 severance payment to John Gruber, and a $123,171 severance payment to Elizabeth Feld
Next Post on why they made the boycott list will be on Home Depot since they and Autism Speaks are connected.
Corporate Ableism in cooperation with Kelloggs
On August 13, 2019, there was a press release from Kelloggs that they teamed up with Autism Speaks to create sensory love notes so “children with autism” can express and receive love in their own unique way during the school day. This is to expand their inclusion initiative.
Autistic children do not need these “love notes” to express and receive love. They do every day from thier loving parents. Whether its from the things they need, the tablets they have, a special snack they get sent to school with, communication device, etc. They do not need Kelloggs to team with the leading Autism Ableist leader.
“Rice Krispies Treats believes every child needs love and support as they head back to school, developing writable wrappers in 2017 for parents and caregivers to send their children encouraging messages in their lunchbox. Last year, Rice Krispies Treats took a stand for inclusivity by partnering with the National Federation of the Blind to create accessible Love Notes in the form of Braille stickers and re-recordable audio boxes.
Instead of inclusion this sounds like inspiration porn to me. “Let’s show we are inclusive and put out a press release so people can say how inspiring we are.” Please. We are not to be objectified for typical people to feel good.
“This is a beautiful way to extend our Rice Krispies Treats Love Notes and showcase the many ways to express love and support as kids return to school,” said Kris Bahner, senior vice president of Global Corporate Affairs at Kellogg. “This cause is very dear to me as a mom of a child with autism. I know firsthand that love and emotions aren’t always easy for children on the spectrum to express and receive – but they need to feel it and share it as much as any other child.”
It seems to be all about the typical moms and not about the autistics themselves. Nowhere does it mention how it benefits the autistic children. How do they feel about it? They do not know how we feel or how the difficulty of our emotions.
“We are dedicated to creating a more inclusive world for people with autism and are thrilled to partner with brands like Rice Krispies Treats that share a similar commitment,” said Lisa Goring, strategic initiatives and innovation officer at Autism Speaks. “With the Love Notes campaign, we hope families will have more ways to share love and support with their children as they head back to school.”
By using person first language they are not being more inclusive. They are excluding us. Autism Speaks seeks to eradicate us. They are a hate group. We are constantly voicing our opinions only be be ignored. They use the hate symbol : the puzzle piece. They do not even ask what we would prefer. Autism Speaks had polls after polls about person first language vs identity first language. They did not get the result they want so they ignore us. This is very typical of them. They would rather send our kids to ABA conversion therapy for 40 hours a week, away from society. This is the opposite of inclusion.
The sensory Love Notes were inspired by children like S.J. Monville, a kindergarten student with autism. S.J. is relocating from a special needs school to a public school this year—a big transition for him during a season already filled with change. He will take on the new school year with love and support from his family, especially from his parents Kayla and Steele, and his grandparents.
I admit, the sensory notes are a very cool thing but choosing the hate group to represent us is disgusting. Relocating to a different school environment can be stressful. This child does not need the notes to feel love from his parents and grandparents. They are preying on a marginalized group.
“We’re dedicated to promoting solutions for the needs of people with autism and their families. Let’s make 2020 the Year of Kindness. Will you join us in pledging to create a kinder world this year? “
Autism Speaks says this while telling the viewer on the website that they can “triple your impact” with donations. Still asking for money for this.
Nothing has changed. They are still looking for solutions for us. We are not a puzzle that needs to be solved. We are people that need to be accepted. We correct them about identity-first language constantly. They hold polls showing that we prefer it and then delete the polls when they do not get the results they want.
They coopt our culture. Autism is not about allistic family members and finding a cure. It is about autistic people and our treatment in this world. Their #bekind initiative is to tone police autistic people who have had enough. We say how we have been mistreated by them and they tell us we are not being kind in our message. We have had enough. They have not changed a damned thing.
|The bisexual flag. Take a look how similar the logo is to the bisexual flag. 70% of autistics are LGBTQ+. Co opting our culture this way too!
Autistic self advocates are here to stay and we are not fooled. I would rather use their logo for target practice until they LISTEN TO AUTISTICS.
Responses to Protests
Autism Speaks is Starting to Lose Donors
personal experience with the organization