At Thinking Person’s Guide to Autism, we believe autistic people of all ages and abilities deserve to be treated with respect, have their civil rights and humanity recognized, and have access to the resources and accommodations they need. We will not support an autism organization that does not abide by these basic precepts.
We acknowledge that it can be difficult to identify autism organizations which legitimately work towards the best interest of autistic people and their families, as questionable autism organizations tend to employ the vocabulary of acceptance and support—even when actively undermining those principles.
How can you know which autism organizations to support and trust? Those we endorse follow these guidelines:
- 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.
Autism organizations we DO recommend
- The Autistic Self Advocacy Network (www.autisticadvocacy.org): 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.
- Autistic Women and Nonbinary Network (awnnetwork.org): Provides community, support and resources for Autistic women, girls, nonbinary people, and all others of marginalized genders.
- Association For Autistic Community: Fosters community and connections among autistic people, through conferences/retreats such as Autspace, education, and advocacy.
- Autistics 4 Autistics (a4aontario.com) is a collective of autistic adults, advocating for reform to Ontario’s approach to autism funding and services.
Autism organizations we DO NOT recommend
- 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.
Note that these lists contain examples only; we are not listing every single useful or questionable autism organization. However, if you want to know if an autism organization does good work for autistic people or not, please see if they follow the five guidelines above.