There are a lot of autism organizations out there, and it can sometimes be difficult to tell which ones are worth supporting, and which are worth boycotting. Some organizations appear to be autistic advocacy organizations, when they are in reality harmful to autistic people.
What is the difference between autistic advocacy organizations and bad autism charity organizations? True autistic advocacy organizations involve autistic people, and are created by autistic people themselves. From the very beginning, autistic advocacy organizations are made for autistic people, by autistic people, and their missions are focused on improving rights and opportunities for autistic people. Autistic advocacy organizations are centered on the social model of disability that supports the notion that autistic people are more disabled by physical and cultural barriers than they are by their disability or neurodiversity, rather than the medical model of disability, which asserts that autism and related conditions are undesirable and should be treated or cured. They use preferred symbols and language of the autistic community, such as identity first language (“autistic” rather than “has autism”) and using the rainbow infinity loop as the symbol for neurodiversity rather than a puzzle piece, which has a bad and ableist history. They do not present autism as something that is wrong or undesirable, but as something that should be understood and socially accepted. Most of the funding for autism advocacy organizations are geared towards services that benefit autistic people, such as for communication, education, housing, healthcare, and for advocacy itself. Funding may also go towards funding conferences that feature autistic speakers and researchers that support autism advocacy.
Autism charities, on the other hand, are more geared towards families of autistic people, such as parents and relatives of autistic people. They are centered on the medical model of disability, and often include the notion of curing, treating, preventing, or combating autism in their mission statement, or otherwise looking for “answers” to solve the “puzzle” of autism. They characterize autism as a tragedy or something undesirable, and may compare it to diseases and disorders. They may use outdated or falsified research to support their statements of autism being a tragedy or being caused by environmental factors or vaccines. They often have minimal, if any involvement of autistic people in their organization. They may pathologize autism or compare autism to a disease by using language to describe autistic people such as “people touched by autism,” “people impacted by autism,” or, “people affected by autism.” They may use symbols that depict autistic people as broken, missing links or infantilize autistic people, such as the puzzle piece symbol. A majority of the budget for most autism charities goes towards cure and treatment research, administration, and conferences that support the medical model of disability, advertisements that spread autism “awareness” through pathologizing autism and fear mongering such as the “I am Autism” advertisement from Autism Speaks.
So without further ado, here are some examples of good autistic advocacy organizations, and bad autism charities, and if applicable, companies who support each.
Good autistic advocacy organizations:
- Association for Autistic Community
The Association for Autistic Community is a nonprofit organization that organizes Autspace every year, which is a conference in the United States that features autistic researchers, academics, public speakers, authors, artists, and musicians among others. It is a celebration of autistic culture and community. Autspace 2019 was held from August 15th-18th in in Ortonville, Michigan, at Butzel Retreat Center. More information about Autspace is here: http://autisticcommunity.org/autspace-info/
- Autistics Against Curing Autism
Autistics Against Curing Autism started as a chapter of the Autistic Self Advocacy Network, but branched off into its own nonprofit organization run by autistic people in Chicago, Illinois. Autistics Against Curing Autism helps to educate neurotypical people about autism, protest against ableism and anti-autistic rhetoric, and help autistic people with self advocacy and overcoming challenges. Their events include meetups to connect the autistic community as well as protests against ableist organizations such as Autism Speaks. While the name of the organization is Autistics Against Curing Autism, they are also welcome and supportive of non-autistic allies who want to help advocate and spread autism acceptance.
- Autistic Self Advocacy Network (ASAN)
The Autistic Self Advocacy Network is a nonprofit organization run by autistic people, for autistic people. It is a disability rights organization in the United States that advocates for public policies that benefit autistic people and other neurodivergent and disabled people, as well as organizing protests against those that do not. ASAN also gives out scholarships to autistic college students, as well as hosts the Autism Campus Inclusion (ACI) program in Washington D.C. every June, which teaches autistic college students how to advocate for themselves and for others, as well as how to start their own neurodiversity and autism rights clubs on their own college campuses. During the COVID-19 pandemic, ACI has been moved to virtual Zoom sessions that teach how to create safe neurodivergent virtual spaces. A flyer about ASAN’s goals can be viewed here, and their position statements can be viewed here.
- Autistic Inclusive Meets (AIM)
Autism Inclusive Meets is an autistic advocacy organization created by autistic people in the United Kingdom and is led by an autistic mother and advocate, Emma Dalmayne. Autistic advocate Christa Holmans, also known as Neurodivergent Rebel, is also involved with AIM. There is a USA chapter of AIM as well, and in March 2021, Fierce Autistics and Allies, formerly an autistic led organization based in Fort Worth, Florida, has merged with the US branch of AIM. The USA branch of AIM is led by autistic activist, Amanda Seigler from the Facebook page, Fierce Autie. I am also an AIM board member for the USA branch along with former FAA members and autistic activists, Ira Eidle, Lindsay Mohler, Jennifer Davis, Nick Seigler, and Jamie Sara Diamond among others. AIM is a nonprofit organization focused on promoting autism acceptance by educating the general public about autism and the needs of autistic people, as well as protesting against laws and organizations that harm autistic people. They also connect the autistic community by hosting weekly meetups and organizing events such as autistic pride picnics, which celebrate autistic culture. Due to the pandemic, many of AIM’s events now take place virtually, however there are now limited in person social events as well for the UK branch of AIM.
- Autistics for Autistics Ontario (A4A)
Autistics for Autistics (A4A) is an organization of autistic adults in Canada who are also an affiliate with the Autistic Self Advocacy Network (ASAN). They are focused on improving rights and opportunities for autistic people and meeting the needs of the autistic community, especially in the areas of school inclusion, employment, housing, and access to medical care. They also organize protests against ableist organizations such as Autism Speaks Canada.
- AUsome Ireland
AUsome Ireland is a community organization run by autistic people. AUsome Ireland hosts AUsome Cork every year, which is a conference that features autistic advocates and educates the general public about the needs of autistic people. While normally in person, AUsome Cork has taken place virtually in recent years due to the COVID-19 pandemic.
- Autistics United Canada
Autistics United Canada is a disability rights organization created by autistic people and are “committed to raising the voices of autistic people.” They were previously affiliated with the Autistic Self Advocacy Network, and was later established as Autistics United Canada with chapters and self advocates throughout Canada. They are focused on building connections and community of autistic people and fostering autistic identity and pride. They advocate for improving education and accessibility to healthcare for autistic people, as well as ensuring that autistic people are involved in public policy decisions made about them. They additionally have a mobile neurodiversity library in their Vancouver chapter with books about autism acceptance as well as fidget gadgets for autistic people.
- Autistic Women and Nonbinary Network (AWN)
The Autistic Women and Nonbinary Network (AWN) is an autistic led organization “with a mission to provide community, support and resources for Autistic women, girls, nonbinary people, and all others of marginalized genders.” They also provide support for minority groups such as autistic LGBTQ+ people and autistic people of color. AWN provides opportunities to connect the autistic community such as networking, educational and social gatherings, autism acceptance events, book readings, and autistic pride picnics among others. Sponsors of AWN include Felicity House, Ford Foundation, Massachusetts Institute of Technology, AAPD, Nebraska Dept. of Health and Human Services, and Stavros.
- CLE Autistes
CLE-Autistes is a French autistic advocacy organization that is the Collective for the Freedom of Expression of Autistics, with the tag line, “Never anything for us, without us!” It was made by autistic advocates to educate others about autism and fight stigma that exists about autism, as well as to advance autistic community and pride. CLE Autistes also protests anti-autistic people and policies, such as discredited anti-vaxxer doctor, Andrew Wakefield and the organization Vancre l’autisme, which translates to, “Overcoming autism,” and is an organization that pathologizes autism as well as bullies and mistreats autistic people.
- Communication First
Communication First is an organization that advocates for nonspeaking neurodivergent and disabled people. It is led and guided by individuals who have a communication related disability or who identify as disabled. The mission of Communication First is, “To educate the public, advocate for policy reform, and engage the judicial system to advance the rights, autonomy, opportunity, and dignity of people with speech-related communication disabilities and conditions.” Communication First promotes opportunities, accommodations, autonomy and self-determination, equal rights, inclusion and dignity for people with speech-related disabilities and conditions. Goals of Communication First include to improve understanding and change societal stigma about people who communicate differently, to reform policies and improve current practices regarding nonspeaking people, and to protect and defend the legal rights of nonspeaking individuals.
- Foundations for Divergent Minds
Foundations for Divergent Minds is a nonprofit organization based in Texas that is led by autistic and other neurodivergent people and, “provides training and education to parents, teachers and service providers on Neurodiversity-aligned practices and support.” Foundations for Divergent Minds a great resource for those who want to learn more about the autistic community and how to better serve the needs of neurodivergent people and aims to change the medical model, deficit based ways that society perceives autistic and neurodivergent people.
- International Badass Activists
International Badass Activists is an organization founded by autistic activist, Eve Reiland, who is also the co-founder of the Autistic Cooperative. According to its website, International Badass Activists is, “A peer-led organization focused on activism campaigns, stigma busting, divergent news and education, peer community development, Autistic-to-NT bridge-building projects and other badass initiatives to support the Neurodiversity Civil Rights Movement.” It also protests other ableist organizations such as TACA, or The Autism Community in Action, AutismOne, and MAPS and speaks out against autism pseudoscience and quackery. It is also a platform that helps to spread news and information about autistic history and issues concerning the autistic community.
- London Autistics Standing Together (LAST)
London Autistics Standing Together (LAST) is an autistic advocacy organization led by autistic advocates in London, Ontario in Canada. They were founded in 2016 in response to a lack of support for autistic people. LAST holds biweekly meetings at Knollwood Public School in London, Ontario as a support group for autistic people, and also has a neurodiversity lending library in which support group members can check out books and stim gadgets. Sponsors of LAST include Empower U and Art for Autism.
- Nonspeaking Community Consortium
The Nonspeaking Community Consortium (NCC) is a nonprofit organization founded by nonspeaking autistic and other neurodivergent nonspeaking people and allies and promotes communication access and choice. The NCC has the motto, “Because communication is a human right.” It advocates for the rights of nonspeaking autistic people and its mission statement is, “To promote access and communication choice for nonspeaking individuals through education, research, and advocacy.” Nonspeaking autistic people are largely underrepresented in media and in conversations about autism, and the NCC seeks to change this by putting autistic nonspeaking voices first. The NCC celebrates neurodiversity and autistic pride, and recognizes different ways that autistic people communicate.
- The Autistic Cooperative
The Autistic Cooperative is an international, autistic-led advocacy and networking organization. It is a collective of autistic advocates and activists and representatives of other autistic advocacy organizations from all over the world. It helps to provide support for autistic people, as well as helps to cultivate pride and acceptance for autistic people.
- The Thinking Person’s Guide to Autism
The Thinking Person’s Guide to Autism is a platform that provides autism news, discussions and resources. Its mission is to provide clear, referenced, and evidence supported information contrary to negative societal attitudes about autism and fraudulent autism pseudoscience that is often promoted as autism “cures” and “treatments.”
- Yellow Ladybugs, Autistic Girls and Women
Yellow Ladybugs is an autistic led, non-governmental organization in Australia that promotes the rights and social acceptance of autistic women, who are more likely to be misdiagnosed or undiagnosed due to a male diagnosis bias in autism, existing male based stereotypes in autism, and that autistic women may present autism differently than autistic men. The mission of Yellow Ladybugs is to support, celebrate and recognize autistic women. Yellow Ladybugs hosts social events for autistic girls ranging from ages 5 to 16 in sensory friendly, accommodating, and inclusive environments to help foster autistic community and culture from a young age. A sponsor of Yellow Ladybugs is Nelson Alexander.
Bad autism charity organizations:
- American Autism Association (AAA)
The American Autism Association does not have any involvement or input from autistic people and was made for caregivers and families of autistic people. Its logo uses the puzzle piece symbol, which is disliked by a majority of autistic people and has an ableist history. It also spreads the myth that boys are five times more likely to be autistic than girls and encourages caregivers to use Applied Behavioral Analysis, a controversial and harmful early intervention that can cause PTSD in autistic adults. It additionally uses language on its website that pathologizes autism, such as, “The symptoms of autism are treatable!” and refers to autistic people as, “Individuals affected by Autism Spectrum Disorder.” Sponsors of the American Autism Association can be viewed here, the most significant of them being Autism Parenting Magazine, Curemark, Mindy Wender Fitness, El Paso Ranch, Shaping Change, and Everyone Can Learn.
- Autism Canada
While Autism Canada does have an “ASD Advisory Committee” of autistic people and has taken a stance against the blue pumpkin trend for Halloween, on a whole, the organization is still problematic. Autism Canada uses pathologizing language about autism, and discusses “biomedical treatments” and quack diets for autism on their website. It promotes other ableist organizations such as the Medical Academy of Pediatric Special Needs, or MAPS, which was formerly, “Defeat Autism Now!” (DAN).
- Autism Hope Alliance (AHA)
Autism Hope Alliance has parents of autistic children on its board, but has no input or involvement of autistic people. Autism Hope Alliance is partnered with the Autism Recovery System, which is an online “autism treatment and recovery” website, which states that, “Yes, autism IS treatable, and in some cases, even recoverable.” This language pathologizes autism and stigmatizes autistic people. Autistic people do not “recover” from autism, because autism is not a disease to be recovered from. Autism Hope Alliance describes itself as, “The first non-profit foundation for Autism to emerge from the natural foods industry,” and promotes supplements as “treatments” for autism, and additionally supports research on dangerous and lethal chelation and detox for autism. A full list of Autism Hope’s sponsors can be viewed here, and they include various supplements, CBD products, and companies that claim to cure or treat autism, such as 101CBD.org, Autism Recovery System, and Autism Transformed.
AutismOne is a parent driven organization that does not involve autistic people and characterizes autistic people as diseased and poisoned and in need of a cure. The website’s front page includes harmful and stigmatizing language such as, “Winning our war against autism,” and, “Recovery is possible! Children get better!” AutismOne supports cure and treatment research for autism and hosts an annual conference in the United States that promotes quackery and attracts harmful figures to the autistic community such as Andrew Wakefield, Jenny McCarthy, and Kerri Rivera, who all support curing and treating autism with methods such as supplements, detox, and even chelation and MMS bleach. To find out more about the harm of AutismOne, there is even a website dedicating to exposing this harmful and ableist organization: http://exposingautismone.com/.
- Autism Science Foundation
The Autism Science Foundation is an organization based in New York which funds cure and treatment research for autism, and its goals include providing “more effective treatments” for autism. It endorses Applied Behavioral Analysis as a “leading treatment for autism,” as well as Pivitol Response Training and discrete trial teaching, or other variations of ABA that use rewards, punishments, and prompts to control and modify an autistic person’s behavior.
- Autism Society of America (formerly the National Society for Autistic Children)
The Autism Society of America was founded in 1965 and was originally called the National Society for Autistic Children, but the name was changed to reflect that autistic children grow up. Founders of the Autism Society included Bernard Rimland and Ivar Lovaas, both of whom are figures who have caused significant harm to the autistic community. Bernard Rimland promoted biomedical interventions for autism and believed environmental factors, including pollutants, vaccines, and antibiotics were causations for autism and has also advocated for harmful ways to “cure” autism, such as chelation, which has been disproven as a “treatment” for autism and is extremely dangerous. He also founded the ableist organization, “Defeat Autism Now!” Ivar Lovaas was the father of Applied Behavioral Analysis, which is a harmful early intervention that aims to reduce and eliminate autistic behaviors believed to be “problematic” such as stimming, echolalia, avoiding eye contact, or playing in the “wrong way,” and uses psychological, and even physical abuse to force compliance. There is evidence that ABA can even cause PTSD in autistic adults. More information about the ableist history of the Autism Society of America can be found in this article by autistic advocate, Amanda Seigler.
The Autism Society has also coined the puzzle piece ribbon for autism in 1999 as a symbol of autism awareness, which is a harmful symbol in the autistic community. The Autism Society has advocated for policies that have harmed autistic people, such as the Combating Autism Act (now the Autism CARES Act), which has invested billions of dollars into cure and treatment research for autism, and very little funding for education and services for autistic people. It has written joint letters with other ableist organizations such as Autism Speaks urging the passage of Autism CARES. Some chapters of Autism Society of America also has harmful people leading it, such the president of the Autism Society of America San Francisco Bay Area, Jill Escher, is also the president of another ableist organization, the National Council on Severe Autism. The Autism Society’s website and organization is largely tailored towards families of autistic people rather than as a resource for autistic people themselves.
The Autism Society has recently made some steps in the right direction, including adding self advocacy and education resources to its website, adding autistic people to its board, and supporting legislation to improve employment of autistic people and stop restraint and seclusion at schools. However, the Autism Society has historically been focused on treating autism rather than helping autistic people, and this priority still unfortunately remains the same today. This position statement on the state of science in causes of autism, released in September 2019, includes pathologizing language such as, “The rate of autism is rising, ” and describes autism as a, “important public health concern,” as if autism was a disease or epidemic. A full list of the Autism Society’s partners can be viewed here, the most significant of them being Amazon and eBay.
- Autism Speaks
Autism Speaks is possibly the largest and most well known autism organization in the world, and is also one of the most controversial. Their ableist history is so extensive that I wrote a separate article to cover it in more detail. In a quick nutshell, Autism Speaks has released harmful and stigmatizing PSAs about autism, such as its infamous 2009, “I am Autism” PSA written by Billy Mann, who is still on the Autism Speaks board of directors, who has retweeted hateful articles about autistic people, and has blocked myself and other autistic advocates on Twitter. His celebrity influence has also convinced several musicians to donate to Autism Speaks. Autism Speaks has paid their executives six figure salaries while spending less than 2% of its budget on services for autistic people. It has lobbied for Applied Behavioral Analysis and the recently passed reauthorization of the Autism CARES Act that will give funding for cure and treatment research of autism. Only two out of twenty-six of their board members are autistic, and before 2015, Autism Speaks had no autistic representation on their board at all. Autism Speaks continues to silence autistic people today and release stigmatizing PSAs and harmful misinformation about autism to families with a recently diagnosed autistic child in their ableist 100 Day Kit, which encourages families to grieve over their autistic children once they are diagnosed.
There are many corporate sponsors of Autism Speaks, with some of its primary donors being Dollar General, GameStop, Alpha Xi Delta Women’s Fraternity, White Castle, Home Depot, Quadrant Biosciences, SunTrust Foundation, Modell’s Sporting Goods, Wilson Sporting Goods, Nest Fragrances, Cherry Hill Programs, Great Wolf Lodge, and Charitable Auto Resources (CARS).
- Autism Treatment Center of America
The Autism Treatment Center of America was founded in 1974 by Barry Neil Kaufman and Samahria Kaufman who coined the ableist Son Rise program, which charges families $875 for unproven and unscientific techniques to “treat” autism and described as an “at home autism treatment program.” It also sells ableist novels such as, “Autism Breakthrough” and “Autism Can be Cured” on its store. Its website dehumanizes autistic people, exploits autistic children, and describes autistic meltdowns as “tantrums.”
- Center for Autism and Related Disorders (CARD)
The Center for Autism and Related Disorders, or CARD, was founded in 1990 and is a chain of Applied Behavioral Analysis facilities throughout the United States led by BCBAs (Board Certified Behavioral Analysts) and is described as the “world’s largest autism treatment provider.” Their website states that, “At CARD, we truly believe that recovery is possible, and we develop our programs with that in mind.” The founder of CARD is Doreen Granpeesheh, a BCBA-D who according to CARD, “has expertise in the field of autism research and treatment.” The website hails Ivar Lovaas, the founder of ABA, as someone who, “Discovered that intensive early intervention using applied behavior analysis (ABA) yielded a 47 percent recovery rate among individuals with autism who participated in his study.” ABA is strict compliance therapy and is extremely abusive towards autistic people. CARD focuses on “treating” autistic people through ABA and attempts to make autistic people appear neurotypical.
- Generation Rescue
Generation Rescue is a “charity” founded in 2005 by Lisa and J.B. Handley, but is now led by antivaxxer celebrity, Jenny McCarthy, who uses Generation Rescue as a platform to spread harmful autism pseudoscience and false claims about autism, such as that vaccines or the preservative in vaccines causes autism, that chelation is a “cure” for autism, that quack diets and supplements can “treat” autism, and that biomedical intervention can help autistic children “recover” from autism. Jenny McCarthy and her dangerous rhetoric continue to be promoted in mainstream media today, and I have made a petition here to remove Jenny McCarthy as a judge from the Fox reality TV show, The Masked Singer.
- Medical Academy of Pediatric Special Needs (MAPS) (Formerly Defeat Autism Now!)
The Medical Academy of Pediatric Special Needs, or MAPS, was formerly called, “Defeat Autism Now!” and is still all about treating and curing autism. This statement on the About Us section of their website reads, “The rapidly increasing scientific evidence-based material that supports the medical treatment of autism spectrum related medical disorders is evolving and passed on to practitioners in a systematic, in-depth course of study, in order to have the greatest impact on this medically complex pediatric population.” They also describe autism as something that should be “battled” like a disease: “As practicing medical professionals tasked with battling ASD, we need to implement a sound standard of care that is built on scientifically tested and proven methods. That is why I would like to introduce you to MAPS, the Medical Academy of Pediatrics Special Needs. This forward-thinking organization is dedicated to establishing, teaching and supporting the treatment of these children.”
MAPS is also partnered with Doctors Data Inc., which has been sued by parents of autistic children for giving misleading reports to quack doctors that falsely claim that high levels of toxic metals are in urine and stool samples so that families are more likely to use these results to justify “treating” their autistic children with dangerous pseudoscientific methods such as chelation. They are additionally partnered with other ableist organizations such as The Autism Community in Action (formerly named Talk About Curing Autism) and the National Autism Association.
- National Autism Association
The National Autism Association (NAA) depicts autistic people as broken or in need of a treatment or a cure, deeming autistic people as people “affected by autism.” It promotes pseudoscience including that diets can “alleviate symptoms of autism,” or that autism is “bio-neurological.” It also falsely states in its autism fact sheet that autism can be “completely overcome in some cases,” and that, “Since autism was first diagnosed in the U.S. the incidence has climbed to an alarming one in 59 children in the U.S,” presenting autism as a growing “epidemic” that needs to be treated or cured. NAA lists “dietary interventions” such as the gluten free/casein free diet and the specific carbohydrates diet as well as promotes Applied Behavioral Analysis as a therapy for autism. It has ableist PSA ad campaigns, such as its “Autism SOS” campaign that has an image of an autistic child trapped inside a baby bottle with the SOS standing for, “social avoidance,” “obsession and repetition,” and “speech delays.” Sponsors of the National Autism Association include Alex and Ani, Vivint Gives Back, Comfees Premium Diapers, MedicAlert Foundation, HICKIES Lacing System, RoadID, Avatalker AAC, and The Autism Site.
- National Autistic Society (NAS, formerly the National Autism Society)
The National Autistic Society is the oldest autism organization on the list. It was founded in 1962 as the Autistic Children’s Aid Society of North London. In 1963, Gerald Gasson, a member of the Executive Committee of NAS, designed the very first usage of the ableist puzzle piece symbol for autism, which was a puzzle piece with a picture of a crying child inside of it, and this became the very first logo for the NAS out of the origin that autistic people “suffered from a puzzling condition.” Today, they manage numerous schools and residential care facilities and are the largest autism related organization in the United Kingdom.
To the credit of NAS, they have made some positive changes to their organization since it was founded, including changing the name of their organization to reflect the overwhelming preference autistic people have for identity first language by changing their name from the National Autism Society to the National Autistic Society, by using identity first language on their website, and getting rid of their ableist puzzle piece symbol for autism for their logo despite being the organization that invented it.
However, today they are still a controversial organization in the autistic community. The most recent controversy of the National Autistic Society was in 2018, which came from the charity escaping prosecution for abuse in the Mendip residential care facility they were in charge of as well as covering up the extent of the abuse. They are also controversial for issues of lack of autistic representation in their organization, for not taking a clear stand against strict compliance ABA therapy and supplements and other biomedical treatments, and even listing these as “treatment options” on their website.
The National Autistic Society’s full statement reads, “There are a range of communication-based, behavioural and educational approaches used to support people with autism to fulfill their potential. These include approaches such as PECS (Picture Exchange Communication System), TEACCH (Treatment of Autistic and Communication Handicapped Children), ABA (Applied Behavioural Analysis), sensory integration and speech and language therapy. The National Autistic Society (NAS) believes that such interventions need to be adapted to the needs of the individual and monitored for impact. Biomedical interventions include restrictive diets, supplements, hormone interventions and drugs. Some people advocate the use of biomedical interventions to treat autism, whilst others believe they are useful in treating co-existing conditions. The NAS believes there is little scientific evidence demonstrating the efficacy of biomedical interventions in supporting people to directly ‘manage’ their autism, rather than to treat other conditions. As with many drug treatments, some biomedical interventions have associated side-effects and risks. People with autism may be more susceptible to those side-effects. The NAS believes that biomedical interventions should only be used under medical supervision by someone who understands autism and that the positive and negative impacts should be regularly and carefully reviewed.“
- NEXT for Autism and Center for Autism and the Developing Brain (CADB)
NEXT for Autism is a neurotypical-led autism organization that helped to create and is partnered with the Center for Autism and the Developing Brain (CADB), which is part of the New York Presbyterian Westchester Behavioral Health Center that is an ABA provider. They have a history of being partnered with Autism Speaks as of 2021, still has BCBAs and people studying to become ABA therapists on their team and have no autistic leadership in their administrative team or Board of Directors, but state in their newly updated FAQ page that they are committed to adding more autistic representation to their advisory board, which currently has four autistic advocates out of the 26 total people involved in their organization (or out of 36 people including NEXT Gen). Like on their team, their advisory board also includes BCBAs. One of their co-founders, Harry Slatkin, said in a documentary titled Autism: True Lives that there were times when he hoped his autistic son would go into a pond and drown because he didn’t want him to “suffer like this all of his life.”
Like Autism Speaks, NEXT for Autism is popular among public figures and celebrities. In 2019, the creators of Rick and Morty created a fundraiser for NEXT for Autism. In early April 2021, talk show host, Jimmy Kimmel and YouTuber and former NASA engineer, Mark Rober announced a “Color the Spectrum” livestream fundraising event for NEXT for Autism on April 30th, 2021 featuring many celebrities such as Jack Black, Jon Stewart, Conan O’Brien, Chris Rock, Adam Sandler, Stephen Colbert, Mark Hamill, and John Oliver just to name a few. Following this news, the autistic community urged public figures, YouTubers, and celebrities associated with the event to change the organization to an autistic led one or for celebrities to drop the event altogether. Some have actually listened and are withdrawing their support from the event unless the charity is changed to an autistic led organization, including Rhett and Link, Miranda Sings, Karl Jacobs, and Jacksepticeye.
NEXT for Autism has also responded to the controversy by releasing a statement and a FAQ page. Their statement claimed that they will “never support any group seeking to eliminate or prevent autism or cause individuals with autism to feel lesser for being on the spectrum,” and their FAQ page stated that they are “not currently engaged with Autism Speaks,” while admitting to working with them in the past. At the time of the publication of this article in November 2019, Autism Speaks was listed as a partner for NEXT for Autism. In their FAQ page, they did not withdraw support for ABA, and stated that the field has “evolved” when ABA today uses many of the same techniques including stim suppression, forced eye contact, and forcing autistic people to appear neurotypical. The Center for Autism and the Developing Brain that is partnered with NEXT for Autism also modified the language of their mission statement. On April 19th, 2021 their mission statement read, “conducting research that enhances the understanding of the causes, treatment, and prevention of autism spectrum disorders,” and on April 20th, 2021, their mission statement read, “conducting research that enhances the understanding and treatment of autism spectrum disorders.” Both of these statements say the same thing, that both they and NEXT for Autism prioritize “treating” autism over helping autistic people.
- Pathfinders for Autism
Pathfinders for Autism is an autism organization based in Maryland. It uses the ableist puzzle piece in its logo. It lists Applied Behavioral Analysis and other variants of ABA on its Therapies and Treatments for Autism page, such as Discrete Trial Training (DTT) and Pivotal Response Training (PRT). It also lists quack diets as autism treatments such as gluten free and specific carbohydrate diet, and biomedical treatments such as vitamins and supplements to “treat” autism.
- The Autism Community in Action (TACA, formerly Talk About Curing Autism)
The name of TACA may have changed, but they are still all about “curing” autism. Under the, “Who We Are” page, the founder of TACA states that, “TACA’s goal is to provide education, support, and information to parents to help their children diagnosed with autism be the very best they can be, with the hope of recovery.” TACA constantly promotes “cures” and “recovery” and “medical interventions,” including quack autism diets. TACA has also invited quack doctors and antivaxxers promoting pseudoscience that are on the Quack Doctors Watchlist to their conferences including John Green, Bob Sears, Nancy Hara, and antivaxxer and celebrity, Jenny McCarthy, who was their spokesperson until 2008.
- The Autism Research Institute
The Autism Research Institute (ARI) was founded in 1967 by Bernard Rimland, who also founded the Autism Society of America. As stated earlier, Bernard Rimland advocated for dangerous autism “treatments” such as chelation, and falsely believed vaccines, pollutants, and antibiotics were causations for autism. The motto alone of the Autism Research Institute is ableist: “Autism is treatable.” The Autism Research Institute presents autism as a growing epidemic: “For many years autism was rare – occurring in just five children out of 10,000. However, since the early 1990s, the rate of autism has increased dramatically around the world, with figures as high as 60 per 10,000. In March, 2018, the US Federal Centers for Disease Control that 1 in 59 children in the US is diagnosed with an ASD.” The Autism Research Institute funds research related to causes, treatments, and prevention of autism rather than research of the immediate social needs of the autistic community.
- The National Council on Severe Autism
Just the name alone is ableist because there is no such thing as “severe autism.” Autism is not a binary linear spectrum of low to high functioning, but is a gradient of different needs of each individual autistic person in areas such as executive functioning, sensory input, perception and communication among others. But beyond the problematic name, the National Council of Severe Autism also releases articles commonly promoted by the autistic dark web, or a group of people that harass autistic activists promoting neurodiversity, such as their article, “The Autism Acceptance Hoax,” which is telling that the National Council of Severe Autism are anti-autism acceptance. They not only don’t have autistic representation in their organization, but they also have some harmful people on their staff. The president of the National Council of Severe Autism is also the president of the Autism Society of America San Francisco Bay Area. Alison Singer is the organization’s treasurer, who has worked for other ableist organizations such as Autism Speaks as their vice president in 2009 and is president of the Autism Science Foundation. In a documentary sponsored by Autism Speaks called, Autism Every Day, Alison said (with her child in the same room) that she contemplated driving off a cliff with her and her child inside. The National Council also supports Applied Behavioral Analysis and has numerous BCBAs, or Board Certified Behavioral Analysts, on their board.
- Thinking Autism/Treating Autism
Thinking Autism is a UK based autism charity that promotes quack diets to “treat” autism such as gluten and casein free diets, and falsely claims that autistic people can eventually “recover” from autism. It has testimonies on its website from autistic people who they list have “recovered from” or “relinquished” their autism diagnosis. There are no autistic people in its staff or on its board, and all its board members are parents of autistic children. It pathologizes autism and promotes research investigating causes and treatments of autism rather than research that addresses the needs of the autistic community.
- SPARK for Autism
SPARK for Autism seeks to find “answers” for autism, or treatment or cure for autism through eugenics research. On their website, it says that, “SPARK aims to help scientists find and better understand the potential causes of autism.” They are collecting DNA of autistic people, searching for an “autism gene” and performing genetic testing to develop a prenatal screening test to eliminate autism, and giving out gift cards to participants who send in DNA saliva samples. SPARK is funded by the Simons Foundation Autism Research Initiative (SFARI), who’s mission is to, “improve the understanding, diagnosis, and treatment of autism spectrum disorder (ASD) by funding cutting-edge research of the highest quality and significance. SPARK is assisted by Autism Speaks and their MISSNG project as well as their Autism Response Team. SPARK has also advocated for ABA in their blog and website.
- Vaincre l’Autisme
Vaincre l’Autisme is the French equivalent of an ableist charity such as Autism Speaks. Its English translation is, “To Overcome Autism.” Its founder has bullied autistic people protesting injustice, such as protesters from the autistic advocacy group, CLE-Autistes and autistic advocate, Louis Brunel. Vaincre l’Autisme views autism as a problem to be eradicated or cured, and believes in institutionalization of autistic people.
There are unfortunately many more bad organizations than there are good ones. But what should we do about companies that support the “bad” autism organizations? There are a few options to convince companies and businesses to stop supporting bad and ableist autism organizations:
Unfortunately, most companies and businesses do not do any research or consult with autistic people when deciding which autism organization to support. So many autistic people take it in their own hands to educate corporations, people, celebrities, and businesses on why the organization they are supporting is harmful or ableist, and give alternatives, such as one of the autistic advocacy organizations above. This option works best for small businesses and people who do genuinely want to help and support the autistic community, but do not have prior knowledge about why the autism organization they support is harmful to autistic people. A recent example of a company that changed their organization to support from a harmful one to a good one was Voodoo Doughnut. Out of pressure from autistic advocates educating them with comments on their social media platforms, Voodoo Doughnut changed the organization from Autism Speaks to the Autistic Self Advocacy Network to support autism acceptance. A portion from their Cherry Time flavored donut has benefited ASAN through September 30th, 2019. Knowledge is power, and our voice matters.
This works best for larger corporations who care more about money and public backlash harming their company’s reputation. If enough people threaten to boycott or not purchase a service or product from the company due to their support of a harmful autism “charity” or organization, they will be more likely to change the organization from a bad and ableist organization to a good autistic advocacy organization if they feel their reputation, brand, service, or pocketbook is threatened in any way.
If you want to send a more personal message to the company, person, or business supporting a harmful autism organization, you can contact the organization via phone, email, or through their social media platforms to send them a message of why the organization they are supporting is bad, harmful, or ableist to autistic people. You can also leave them a bad review through Facebook or Yelp if applicable. With enough strongly worded messages on why the organization they are supporting is harmful to autistic people, companies and businesses can be persuaded to change the organization to one the autistic community prefers and supports.
If a company silences, dismisses, bullies, gaslights, or invalidates autistic people attempting to educate them, or is still supportive of a harmful and ableist organization even after they are repeatedly educated by autistic people, the best option may be to confront and protest the company itself for its continuous support of a harmful autism organization. Protests can be virtual, such as a hashtag on Twitter urging others to boycott or contact the company, such as against Uber for their underpaying employees and not complying with the Americans with Disabilities Act, or they can be live, in person protests, such as protests against Chic-fil-A for its support of anti-LGBTQ+ organizations. Large public protests get attention, and even if a company has supported an ableist organization for years, public resistance may pressure the company into ending its support for the organization.
5. Tell Others
If you have friends who care about the autistic community and who support a company which funds harmful and ableist organizations, you may want to tell them about why the company is supporting ableism and discuss what they may want to do about it, whether that be working together to educate the company, contacting the company, participating in a protest against the company, or boycotting the company altogether. You can also post on social media about the company to encourage others to educate or boycott the company.
Not everyone has enough spoons to educate or contact companies, and some autistic people may rely on a service or company and cannot afford to boycott certain companies, so do whatever option works best for you and your needs. But with enough resistance, voices, comments, messages, or complaints against companies that support ableist autism organizations, companies may decide themselves to end their support for harmful and ableist autism “charities” and organizations. And if enough companies listen to the autistic community, them maybe we can put an end to harmful and ableist autism organizations for good.