Problematic Organization: Autism Speaks

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.

My Experience:

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 to 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 was 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 happening.

From that day forward I have a personal grudge against Autism Speaks and everything they stand for.

History

It was founded by Bob Wright in February 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 January of 2008, a child clinical psychologist named Geraldine Dawson Ph.D. became Autism Speak’s chief science officer.

In 2009, Autism Science Foundation was started by Allison Singer just after she resigned as a senior executive of Autism Speaks. She did not want to devote more money into research that tries to prove there is a vaccine-autism link that has been disproved numerous times.

Starting in 2009, they used Wubzy from the television show “Wow! Wow! Wubbzy!”

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 of 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 absence 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 attributed the drop in revenue to changes in funding to their MSSNG research program and declines in walk participation.

In 2018, Alison Singer started the National Council on Severe Autism. This has been just as harmful to the Autistic community.

In 2003, Laura Slatkin, one of Autism Speaks founding members, left to start NEXT for Autism, originally known as New York Collaborates for Autism.

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.

Research

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 complementary and alternative medicine (quack treatments, also called integrative medicine).

Autism Speaks funds the Autism Genetic Resource Exchange. This is a DNA registry of the genotype of phenotype information that is available to autism researchers worldwide. AGRE was established in the 1990s 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 the DNA of 10,000 families that have autistic family members. Their goal is to create a database of sequenced genomic information on autism which would be run on Google’s genome cloud-based genome database, Google Genomics. In December 2014, they announced they would permit worldwide access to the research for further genome analysis.

Spark for Autism is another study looking to compile the largest database of autistic DNA. They say it’s not for a cure but why else would they want it?

Autism Speaks has funded many unethical research studies that include scaring autistic toddlers and testing transdermal nicotine to try to cure us but they say they don’t seek a cure anymore.

Awareness

The walk for Autism research program holds a walk annually. This is held in 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 February 2005, The Today Show aired a week-long series highlighting autism research and treatment.

In 2006, Autism Speaks put out a documentary called Autism Every Day. A longer version was accepted into the Sundance Film Festival. It really shows the martyr narrative and is extremely harmful to the autistic community. The way they portray autistic people is beyond any sort of decency. Watch at your own risk.

In December of 2007, Susanne Wright met with 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.

In 2015, the new muppet on Sesame Street who is autistic was introduced. Her name was Julia. Autism Speaks, ASAN and the Ad Council worked together to create this character. Autistic children were beginning to be seen. As usual, Autism Speaks messed that up too.

On August 5, 2019, ASAN announced that they were ending their partnership with Autism Speaks and Sesame Street. This is because of Autism Speaks 100-Day Kit. In this kid, Autism Speaks encourages the parent to grieve the autistic child as if they had died. This furthers the stigma against autistic adults and children. While early detection is not a bad thing, it is what is done with that early diagnosis. Autism Speaks continues the tragedy narrative to further imply that autistics are burdens on their families. They also push a lot of psudeoscientfic and known harmful treatments in this kit. ASAN tried to explain their position and Autism Speaks as well as the Ad Council was unwilling to budge. Julia could have been a great thing for the autistic community.

Legislation

On Dec 19, 2006, the 109th Congress passed the Combatting Autism Act. This authorized funding into autism research and ABA. Autism Speaks lobbied for this law to pass. No autistic person was talked to in the writing of this bill and passing it into law.

“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 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, but they also 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 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.”

Virginia, February 2022

Recently, Meghan Asburn From Not an Autism Mom via Facebook Post:

This is important for parents of nonspeaking children to read and process.

This week, I advocated in front of Virginia House of Delegates for my nonspeaking child, his peers, and their teachers. I didn’t realize I would be going up agains Autism Speaks and Council of Autism Service Providers – CASP.

HB 1047 was a MODEST but meaningful bill that would protect nonspeaking students in Virginia by ensuring that –

1) a student’s need for AAC (Augmentative and Alternative Communication) wouldn’t be used as a reason to segregate that student,

2) school staff would receive training to support their student BEFORE school starts,

3) IQ test results wouldn’t be used to deny access to AAC.

These are basic protections already put in place by IDEA, but they don’t happen.

This is why the bill was brought forth… because nonspeaking students are segregated at an alarming rate and many aren’t even offered AAC.

When I went to speak in favor of this very modest bill, I was joined by several others, including Virginia Education Association, because our teachers WANT training to support their nonspeaking students!

After we spoke, Autism Speaks and CASP (a lobbyist for ABA companies) gave nearly identical testimonies about their “concerns for the bill’s language.”

I will put links in the comments.

Anyway, the bill is dead now and won’t be voted on this year.

So before you “light it up blue” this April, just remember that Autism Speaks advocated AGAINST protections for my son, his nonspeaking peers, and their teachers in Virginia this week.

And be sure to keep this disgustingly wealthy company in mind as you navigate the IEP process, and as you fight for services and inclusion.

~ Meghan

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. 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 fulfill 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 a 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-speaking. She also discussed Autism Speaks legal achievements in providing families with more financial assistance and funding.

On February 13, 2019, Billy Mann, the author of this advertisement, issued a fake apology.

Position on Vaccines

Autism Speaks previously had 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 2014, Autism Speaks said “We strongly encourage parents to have their 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 practitioner 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.

Financial Spending:

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 HillCompared 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 Kellogg’s 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 their loving parents. Whether it’s from the things they need, the tablets they have, a special snack they get sent to school with, communication devices, etc. They do not need Kellogg’s 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 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 ignored. They use the hate symbol: the puzzle piece. They do not even ask what we would prefer. Autism Speaks had poll after poll about a person’s 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.

Rebranding:

On February 10, 2020, Autism Speaks made the announcement of a logo change and rebranding. The change is adding some magenta and pink to the puzzle piece. They have all the letters in lowercase. They call 2020 the year of kindness.

“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 co-opt 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.

Criticism

On May 24, 2021, there was an article on Inklings News. “Autism Charity Under fire for promoting research to find a medicinal cure.” According to Healthline,”Most experts agree that there is no cure for autism.” Implying there is one is misleading and ableist. Autism Speaks is getting clap back from the autistic community or as the article says “those who believe it is best to accept the neurological disorder as well as its difficulties.” This is highly prejudicial and biased.

Autism Speaks is still othering “high functioning” autistics and assumes people who advocate fits that mold. A parent in the article says she would promote the opportunity for a cure because “no parent wants to see their child suffer.”

The fact that this article is being published is proof that the autistic community is being heard.

Responses to Protests

In 2020, there was a virtual protest on an Autism Speaks Facebook live stream. The protest was a great success but the response from the Husband of an Autism Speaks executive was not. This took place before Fierce Autistics and Allies and AIM USA merged.

Official Statement by Executive Director, Amanda Seigler Originally posted on April 27, 2020. Moved to the site on September 08, 2020.
On April 25, 2020, Fierce Autistics and Allies protested a kickoff event for Autism Speaks. It was “Steps for Kindness.” This was a virtual walk to fundraise for the corporation.
The turnout was more than anything we could ask for and I want to thank you all personally for it. The protest was a major success but there was one turn of events that left a sour note.
An active board member of our organization received a private message from the husband of an Autism Speaks executive, Lisa Goring. Paul Goring sent my board member a very unprofessional and inappropriate message on Facebook for speaking out in accordance with our mission statement.,

I was shocked such a thing would be sent to anyone, let alone an Autistic person speaking for their rights. I then emailed Autism Speaks.
Shortly after emailing, I received an email from his wife:

After receiving these emails, they do not seem genuine. There is an extra space between “you” and “harm.” This tells me that there was an adjective between those words. This email was about his apology not about what he did. This apology was not sent until prompted. The organization wants this situation over with. Professional collaboration between federal non for profit organizations guarantees the safety of all members involved. Given the breakdown between Autism Speaks and FAA, the resulting sexual harassment will be handled by the organization representing the victim. There is no “war” or “teams” in the initiative toward humane and ethical treatment of Autistic people, and the research pertaining to the disability of autism. This is the only way the Autism community and the Autistic community can work together. The impact of this malfeasance can only be evaluated by multiplying its potential to cause the same harm to 3.5 million Autistic Americans who do not have direct access to an Executive Director of a national non-profit issuing a public statement on their behalf.

Autism Speaks is Starting to Lose Donors

This year, Autism Awareness month of 2021, Nickelodeon and Melissa Joan Hart started to respect neurodiversity and not support Autism Speaks. Blog on What Happened