There’s an autism community (warrior parents, behaviorists, most autism charities) and an autisticAutistic ways of being are human neurological variants that can not be understood without the social model of disability.If you are wondering whether you are Autistic, spend time amongst Autistic people, online and offline.  If… More 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 paradigmWhen it comes to human neurodiversity, the dominant paradigm in the world today is what I refer to as the pathology paradigm. The long-term well-being and empowerment of Autistics and members of… More language.
• They use person first language instead of identity first languageIdentity-first language places the disability-related word first in a phrase. People who prefer identity-first language for themselves often argue that their disability is an important part of who they are,… More.
• They endorse ABA, PBS/PBIS, and behaviorismUltimately behaviorism provides a simplistic lens that can’t see beyond itself.Why is the doctrine of behaviorism still being used, at all?How can ABA be the gold-standard for autism when it… More.
• They court and amplify Autism Warrior ParentsAutism Warrior Parents (AWPs) insist on supporting their autistic kids either by trying to cure them, or by imposing non-autistic-oriented goals on them — rather than by trying to understand… More.
• They don’t have autistic people in leadership roles.
• They use puzzle“Participants associated puzzle pieces with imperfection, incompletion, uncertainty, difficulty, the state of being unsolved, and, most poignantly, being missing,” “If an organization’s intention for using puzzle-piece imagery is to evoke… More piece and “light it up blue” imagery.
• They use inspiration exploitationInspiration porn. What’s that?It’s a portrayal of people with disabilities as one-dimensional saints who only exist to warm the hearts and open the minds of able-bodied people.Speechless on Twitter: “Not… More / inspiration porn tropes.
• They center the perspective of parents instead of autistic people.
• Two main telltales: They try to cure us (eugenicsEugenics is the scientifically inaccurate theory that humans can be improved through selective breeding of populations.Eugenics is an inaccurate theory linked to historical and present-day forms of discrimination, racism, ableism and… More) 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 modelThe proposed biopsychosocial model allows us to provide therapeutic intervention (medical model) and recommend structural accommodation (legislative obligation) without pathologization (social model). In other words, we can deal pragmatically with… More.

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 disabilityIn the broadest sense, the social model of disability is about nothing more complicated than a clear focus on the economic, environmental and cultural barriers encountered by people who are… More that supports the notion that autistic people are more disabledThe label “disabled” means so much to me. It means I have community. It means I have rights. It means I can be proud. It means I can affirm myself… More by physical and cultural barriers than they are by their disability or neurodiversityNeurodiversity is the diversity of human minds, the infinite variation in neurocognitive functioning within our species.NEURODIVERSITY: SOME BASIC TERMS & DEFINITIONS Neurodiversity is a biological fact. It’s not a perspective, an approach, a… More, 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.

Good Autistic Advocacy Organizations vs. Bad Autism “Charities”

1. 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.
2. 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.
3. 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.
4. AcceptanceAcceptance means training mental health service providers to look at autism and other disabilities as a part of a person’s identity, rather than a problem that needs to be fixed. Acceptance… More, not stigmatization: All aspects of the organization’s financial cycle, from advertising and fundraising through grants and programs, must be driven by valuesRemind yourself that shared values, rather than shared beliefs, are what matter when it comes to interacting with others, and that there is no replacement for doing the hard work… More 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.
5. 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 communitiesWhat I have always been hoping to accomplish is the creation of community.Community is magic. Community is power. Community is resistance.Disability Visibility: First-Person Stories from the Twenty-First Century https://www.amazon.com/Disability-Visibility-First-Person-Stories-Twenty-First-ebook/dp/B082ZQBL98/ https://www.amazon.com/Disability-Visibility-Adapted-Young-Adults-ebook/dp/B08VFT4R9T/… More.

How do you know if an autism organization is good?

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 powerThe 20th Century political scientist Karl Deutsch said, “Power is the ability not to have to learn.”I quote this statement often, because I think it’s one of the most important… More 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 differencesOur friends and allies at Randimals have a saying, What makes us different, makes all the difference in the world.Randimals We agree. Randimals are made up of two different animals… More. 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)

Self advocate-led policy experts working on national and regional chapter levels to improve quality of life, understanding, and acceptance for autistic people of all ages and abilities via advocacy, handbooks, toolkits, policy briefs, action alerts, campaigns, and social media.

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 neurodivergentNeurodivergent, sometimes abbreviated as ND, means having a mind that functions in ways which diverge significantly from the dominant societal standards of “normal.”NEURODIVERSITY: SOME BASIC TERMS & DEFINITIONS Neurodivergent is quite… More 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 marginalizedFor me this space of radical openness is a margin a profound edge. Locating oneself there is difficult yet necessary. It is not a “safe” place. One is always at… More genders.

How do you know if an autism organization is good?

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.

Good Autistic Advocacy Organizations vs. Bad Autism “Charities”

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/

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

A4A Ontario

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 careThe activities that constitute care are crucial for human life. We defined care in this way: Care is “a species activity that includes everything that we do to maintain, continue,… More. They also organize protests against ableistable·ism /ˈābəˌlizəm/ nounA system of assigning value to people’s bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness. These constructed ideas are deeply… More 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)
• NonspeakingI am nonspeaking. I am not nonverbal. In fact, I am highly verbal. I don’t use my body’s voice—my vocal chords—as my primary way of communicating. I think I will… More 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

• 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 NeedsThe word “special” is used to sugar-coat segregation and societal exclusion – and its continued use in our language, education systems, media etc serves to maintain those increasingly antiquated “special”… More (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.

How do you know if an autism organization is good?

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 InterdependenceInterdependence acknowledges that our survival is bound up together, that we are interconnected and what you do impacts others. If this pandemic has done nothing else, it has illuminated how… More

The Fund for Community Reparations for Autistic People of Color’s Interdependence, Survival, and Empowerment exists to provide direct support, mutual aidPut simply, mutual aid is a form of political participation in which people take responsibility for caring for one another and changing political conditions by building relationships, networks of reciprocity,… More, and reparations by and for autistic people of color.

Fund for Community Reparations for Autistic People of Color’s Interdependence, Survival, and Empowerment

Join StimpunksStimpunk combines “stimming” + “punk” to evoke open and proud stimming, resistance to neurotypicalization, and the DIY culture of punk, disabled, and neurodivergent communities. Instead of hiding our stims, we… More 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.

Further readingThere are three types of reading: eye reading, ear reading, and finger reading.The Dyslexia Empowerment Plan: A Blueprint for Renewing Your Child’s Confidence and Love of Learning Most schools and… More,