There’s an autism community (warrior parents, behaviorists, most autism charities) and an autistic community (us, actually autistic people). They are very different and often at odds. How can you tell if an autism organization is by and for autistic people and autistic community?
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.
Good Autistic Advocacy Organizations vs. Bad Autism “Charities”
Signs of a Bad Autism Organization
- They use cure and tragedy language.
- They use pathology paradigm language.
- They use person first language instead of identity first language.
- They endorse ABA, PBS/PBIS, and behaviorism.
- They court and amplify Autism Warrior Parents.
- They don’t have autistic people in leadership roles.
- They use puzzle piece and “light it up blue” imagery.
- They use inspiration exploitation / inspiration porn tropes.
- They center the perspective of parents instead of autistic people.
- Two main telltales: They try to cure us (eugenics) and impose non-autistic-oriented goals on us (behaviorism).
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 They may use outdated or falsified research to support their statements of autism being a tragedy or being caused by environmental factors or vaccines.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.
Good Autistic Advocacy Organizations vs. Bad Autism “Charities”
Signs of a Good Autism Organization
- They use identity first language.
- They use neurodiverty paradigm and social model language.
- They reject ABA, PBS/PBIS, and behaviorism.
- They reject cure language and eugenics.
- They have autistic people in leadership roles.
- They use rainbow infinity imagery.
- They center autistic people ourselves and speak in the first person.
- They endorse a biopsychosocial model.
Good Autistic Advocacy Organizations vs. Bad Autism “Charities”
How do you know if an autism organization is good?
- Supports, not cures: autism is a naturally occurring human neurological variation and not a disease process to be cured. Autistic neurology, sensory traits, processing, communication, and other autism-specific traits should be accommodated, not stigmatized. Qualify of life for autistic people of all ages and abilities should be a primary focus. Medical or health issues that may accompany autism should be addressed as co-occurring conditions, not as integral to autism.
- Autistic-informed supports and therapies: Services for autistic individuals must improve their quality of life. When there is conflict between non-autistic autism professionals and the autistic community as to an approach or therapy, the organization takes autistic concerns seriously, and looks to participatory and otherwise autistic-informed research, and self-advocate leadership, for direction.
- Inclusiveness: Autistic people must have significant, meaningful, and primary roles in all aspects of the organization, especially at board and executive levels, with regards to planning and decision-making. Autistic employees and contractors will be compensated at the same level as other participants doing similar work.
- Acceptance, not stigmatization: All aspects of the organization’s financial cycle, from advertising and fundraising through grants and programs, must be driven by values of inclusion and acceptance of autistic people of all ages and abilities. It is not acceptable to use scare tactics or negative imagery to promote autism awareness.
- Advocacy for the human and civil rights of all autistic people: Clear positions must be publicly expressed on issues that affect the well being of autistic individuals. Such issues include the use of physical and chemical restraints; the lack of full inclusion in education, work, and housing; and funding for programs that address the immediate needs of autistic people in their communities.
Nothing About Us Without Us
A motto of the self-advocacy movement is “Nothing About Us, Without Us!”. Lots of people talk about us without letting us talk. We should always be part of the conversation, and be in charge of our lives.
WELCOME TO THE AUTISTIC COMMUNITY
The autism community speaks over us in the autistic community and sucks up all the funding. Organizations that are not autistic and disabled led violate a core tenet:
Nothing about us with us.
I first heard the expression “Nothing About Us Without Us” in South Africa in 1993. Michael Masutha and William Rowland, two leaders ofDisabled People South Africa, separately invoked the slo- gan, which they had heard used by someone from Eastern Europe at an international disability rights conference. The slogan’s power derives from its location of the source of many types of (disability) oppression and its simultaneous opposition to such oppression in the context of control and voice.
“Nothing About Us Without Us” resonates with the philosophy and history of the disability rights movement (DRM), a movement that has embarked on a belated mission parallel to other liberation movements. As Ed Roberts, one of the leading figures of the international DRM, has said, “If we have learned one thing from the civil rights movement in the U.S., it’s that when others speak for you, you lose” (Driedger 1989:28). In this sense, “Our Bodies, Ourselves” and “Power to the People” can be recognized as precedents for “Nothing About Us With- out Us.” The DRM’s demand for control is the essential theme that runs through all its work, regardless of political-economic or cultural differences. Control has universal appeal for DRM activists because the needs of people with disabilities and the potential for meeting these needs are everywhere conditioned by a dependency born of powerless- ness, poverty, degradation, and institutionalization. This dependency, saturated with paternalism, begins with the onset of disability and con- tinues until death. The condition of dependency is presently typical for hundreds of millions of people throughout the world.
NOTHING ABOUT US WITHOUT US: Disability Oppression and Empowerment
“If we have learned one thing from the civil rights movement in the U.S., it’s that when others speak for you, you lose”
Ed Roberts
Good Autism Organizations
Autistic Self Advocacy Network (ASAN)
Autistic Self Advocacy Network (ASAN)
How do you know if an autism organization is good?
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.
Good Autistic Advocacy Organizations vs. Bad Autism “Charities”
Autistic Women and Nonbinary Network (AWN)
Autistic Women & Nonbinary Network (AWN).
Provides community, support and resources for Autistic women, girls, nonbinary people, and all others of marginalized genders.
How do you know if an autism organization is good?
Good Autistic Advocacy Organizations vs. Bad Autism “Charities”
Association For Autistic Community
Good Autistic Advocacy Organizations vs. Bad Autism “Charities”
Fosters community and connections among autistic people, through conferences/retreats such as Autspace, education, and advocacy.
How do you know if an autism organization is good?
Autistics 4 Autistics
A collective of autistic adults, advocating for reform to Ontario’s approach to autism funding and services.
How do you know if an autism organization is good?
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.
Good Autistic Advocacy Organizations vs. Bad Autism “Charities”
More Good Organizations
The following list of good organizations comes from Good Autistic Advocacy Organizations vs. Bad Autism “Charities” over at In the Loop About Neurodiversity. Visit their list for details on why these organizations are good.
- Association for Autistic Community
- Autistics Against Curing Autism
- Autistic Self Advocacy Network (ASAN)
- Autistic Inclusive Meets (AIM)
- Autistics for Autistics Ontario (A4A)
- AUsome Ireland
- Autistics United Canada
- Autistic Women and Nonbinary Network (AWN)
- CLE Autistes
- Communication First
- Foundations for Divergent Minds
- International Badass Activists
- London Autistics Standing Together (LAST)
- Nonspeaking Community Consortium
- The Autistic Cooperative
- The Thinking Person’s Guide to Autism
- Yellow Ladybugs, Autistic Girls and Women
Source: Good Autistic Advocacy Organizations vs. Bad Autism “Charities”
Bad Autism Organizations
How do you know if an autism organization is good?
- Age of Autism: Anti-vaccine, pseudoscience-embracing, cure-oriented parent organization that consistently spreads insupportable and dehumanizing information about autism and autistic people.
- The Autism Science Foundation: Despite refuting autism-vaccine causation pseudoscience, ASF supports cure-oriented research. They also issued a statement endorsing ABA therapy specifically in reaction to autistic-led outcry against the practice as a human rights violation.
- Autism Speaks: Devalues autistic people with fear-based “burden” messaging. Consistently spends more money on fundraising, marketing, and causation- and prevention-oriented research than on resources or research to improve the quality of life for existing autistic people.
- EASI Foundation (Ending Aggression and Self-Injury In The Developmentally Disabled): Promotes electro-convulsive therapy as a way to control “severe” behaviors, without investigating the roots for those behaviors except through a behavioral rather than autism-informed lens.
- Generation Rescue [DEFUNCT]: Affiliated with huckster and “University of Google” graduate Jenny McCarthy. Scares parents with false mercury/vaccine causation myths to get them to pay for useless-to-dangerous pseudoscience autism “treatments”—while mercenary executives and board members skim the profits.
- Medical Academy of Pediatric Special Needs (MAPS): Pseudoscience-based alternative autism “treatment” certification approach for physicians, despite promotional materials written to appear mainstream. Has taken over the Defeat Autism Now! (DAN!) space. Partnered with Generation Rescue, TACA, and NAA.
- The National Autism Association (NAA): Promotes autism pseudoscience, including the myth that autism is “bio-neurological” and that autism traits can be “treated” and “completely overcome” through dietary interventions. Unrepentantly negative and ableist messaging.
- The National Council on Severe Autism: Does not follow a single one of these principles. Cure-oriented. Uses misleading statistics to support the widely-debunked myth of an “autism epidemic.” Is openly hostile to disability-community-led policies on housing, supported decision making, and banning restraints and seclusion.
- TACA (“The Autism Community In Action,” rebranded from “Talking About Curing Autism”): Advocates for cures and “recovery” rather than acceptance and understanding. Endorses pseudoscience-based “medical interventions,” especially diets. Affiliated with “Dr. Bob” Sears, whose medical license is on probation for providing his pediatric patients with questionable vaccine exemptions.
- Treating Autism/Thinking Autism (UK): Former Andrew Wakefield apologists, now promoting cure-oriented autism pseudoscience for treating the “core symptoms” of autism. Scare-mongers about autism “risk factors,” despite evidence autism is both genetic and inborn. Inaccurately and dehumanizingly described autism as a “severe neurodevelopmental disorder that places an enormous burden on affected individuals and their families, and society as a whole.” Exposed in 2022 as having anti-vax links.
- VOR (formerly “Voice of the Retarded”): Promotes institutionalization and segregated living for people with intellectual disability, which is contrary to the wishes of ID/DD self-advocates.
- Together For Choice: Claims “To unite to protect and advance the rights of individuals with intellectual and developmental disabilities (I/DD) to live, work and thrive in a community or setting of their choice” but in practice actively opposes I/DD self advocate orgs’ choices on these issues.
The following list of bad organizations comes from Good Autistic Advocacy Organizations vs. Bad Autism “Charities” over at In the Loop About Neurodiversity. Visit their list for details on why these organizations are bad.
- American Autism Association (AAA)
- Autism Canada
- Autism Hope Alliance (AHA)
- AutismOne
- Autism Science Foundation
- Autism Society of America
- Autism Speaks
- Autism Treatment Center of America
- Center for Autism and Related Disorders (CARD)
- Generation Rescue
- Medical Academy of Pediatric Special Needs (MAPS)
- National Autism Association
- National Autistic Society
- NEXT for Autism and Center for Autism and the Developing Brain (CADB)
- Pathfinders for Autism
- The Autism Community in Action
- The Autism Research Institute
- The National Council on Severe Autism
- Thinking Autism/Treating Autism
- SPARK for Autism
- Vaincre l’Autisme
Source: Good Autistic Advocacy Organizations vs. Bad Autism “Charities”
Give to the Fund for Community Reparations for Autistic People of Color
The Fund for Community Reparations for Autistic People of Color’s Interdependence
The Fund for Community Reparations for Autistic People of Color’s Interdependence, Survival, and Empowerment exists to provide direct support, mutual aid, and reparations by and for autistic people of color.
Fund for Community Reparations for Autistic People of Color’s Interdependence, Survival, and Empowerment
Join Stimpunks Foundation in donating to the Autistic People of Color Fund. They are a legitimate autism charity run by and for autistic people. Your money will help instead of harm when sent to Lydia.
Give to the Fund
The Fund for Community Reparations for Autistic People of Color’s Interdependence, Survival, and Empowerment practices redistributive justice and mutual aid by returning and sharing money directly to and with autistic people of color. We provide microgrants to Black, Brown, Native, Asian, and mixed-race people in the autistic community for survival, organizing, leisure, and pleasure.
Further reading,
