What Is Autistic Self-Advocacy?

April is Autism Awareness Month, which makes for a great opportunity to learn about autistic self-advocacy. This movement fights to put the conversation about autism policy and the autistic community into the hands of those who know it best: autistics.

Self-advocates have visited the White House to lobby on autism policy, led successful public campaigns to combat autism stigma and organized movements like the Day of Mourning, which commemorates the lives of disabled people killed by family members and caregivers. We think their work deserves a closer look!

Autistic self-advocates, as the name implies, are autistic people who directly engage in public education, policy, and other advocacy work. They believe that they’re the biggest stakeholders in the national and international conversation about autism because they have the most to lose — and gain.

Yet, as Ari Ne’eman, founder of the Autistic Self Advocacy Network (ASAN), a major autism rights group, noted, autistics are often excluded from conversations about their own lives.

While the movement is large and incredibly diverse, broadly speaking, self-advocates believe that their voices should be centered in the conversation.

Thus, they argue, the boards of autism organizations should include autistic people, and research on autism should include autistic scientists and organizers, for example. Public figures in the movement include individuals from a variety of backgrounds, offering a diverse representation of the autism spectrum. Some participants may be nonverbal or have multiple disabilities.

In the late 1980s and 1990s, the disability rights movement in the United States gained tremendous ground, driven in part by radical AIDS activism group ACT UP! and the fight to pass the Americans with Disabilities Act, or ADA, in 1990. In 1990, disability rights organizers founded Self Advocates Becoming Empowered and set the stage for a turning point in disability activism.

By the early 1990s, the autism rights movement had begun to establish itself, with Jim Sinclair founding the Autism Network International in 1992. ASAN was founded in 2006, and the internet has enabled an explosion of organizing and communications across the autistic community.

Some broad principles govern the self-organizing work — and not just the belief that autistics are integral to the conversation. A central tenet of self-advocacy identifies autism as a social and cultural identity and a reflection of human diversity, not a disorder to be “fixed.”

Many self-advocates reject calls for cures, pushing instead for inclusion, accommodation and an acceptance of neurodiversity — which includes people with a range of developmental, cognitive and intellectual variances in brain function.

Self-advocates also express concerns about “cures” and “therapies” that may be unethical or dangerous. Aside from the larger question of whether autism needs to be cured at all, some families risk their children’s welfare with esoteric and sometimes toxic “treatments” or abusive “therapies” that can be shocking and traumatizing or subject them to dangerous diets.

Some members of the self-advocacy movement are also unsettled by false claims made about vaccines and autism, arguing that vaccines are a vital public good — not a cause of autism.

Listening to self-advocates can provide an informative and enlightening view on social issues relating to autism. Self-advocates hold conferences and events, publish books and articles and engage in a range of other outreach activities. Their focus includes a range of work all devoted to autism acceptance and inclusion, and the belief that autistics should lead the charge.

What does this mean for you? If you’re autistic and you aren’t familiar with the movement, you might find a wealth of valuable and empowering resources. If you’re not autistic and you’re interested in advocacy work, you may consider turning to self-advocates for guidance and understanding.

Photo Credit: South L.A./Flickr

44 comments

Erika Walker
Erika Walker3 months ago

ty

SEND
Marie W
Marie W11 months ago

Thanks for sharing.

SEND
Margie F
Margie FOURIEabout a year ago

Thanks

SEND
ANA MARIJA R
ANA MARIJA Rabout a year ago

Petition signed with hope. Thank you.

SEND
JD She
JD Sheabout a year ago

Noted

SEND
Mariana L
Mariana Labout a year ago

petition signed,thanks for the info

SEND
Danuta W
Danuta Wabout a year ago

Thanks for sharing

SEND
william Miller
william Millerabout a year ago

thanks

SEND
Anne M
Anne Mabout a year ago

They're the experts...

SEND
Colin C
Colin Cabout a year ago

Thanks

SEND