Autistic Self-Advocacy: History, Groups, and Programs

The notion of autism self-advocacy didn't really get off the ground until the mid-1990s, when the diagnostic criteria changed to include those with strong verbal and intellectual abilities. Until that point, a diagnosis of "autism" indicated a severe disability, including gross deficits in language development, lack of responsiveness to other people, and behaviors such as head-banging and rocking.

With the 1994 edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), the "autism spectrum" was created and included Asperger's syndrome and several other related disorders. Asperger's, in particular, was the diagnosis given to people with high intelligence and strong verbal abilities who also had significant social and behavioral challenges. The diagnosis of Asperger's syndrome was retired with the publication of the DSM-5 in 2013 and now falls under the general category of autism spectrum disorder (ASD).

Autism self-advocacy organizations differ from other autism organizations in that they are run by people with autism. While some lack the desire or skills to speak for themselves, many of those on the higher-functioning end of the spectrum in particular are eager to share their experiences and advocate for greater awareness of the disorder. Autistic adults have formed a wide range of support networks, resource-sharing groups, and political policy-oriented action groups.

If you or an autistic adult in your life is interested in joining a self-advocacy group, here are some of the most well-known organizations:

The Autistic Self-Advocacy Network

The Autistic Self Advocacy Network (ASAN) was founded in 2006 in response to the lack of representation of autistic voices in the national dialogue on autism. ASAN focuses largely on political advocacy, leadership development, technical assistance, and employment opportunities. It also supports community-based participatory research, public policy analysis, education, and other initiatives to help inform the public about ASD.

ASAN also supports a network of affiliate groups across the country and internationally that share the same basic core values and policy positions as ASAN.

Asperger/Autism Network

The Asperger/Autism Network (AANE) is a broad-ranging nonprofit with an extensive program dedicated to self-advocacy. In addition, the network provides a wide variety of information on all aspects of autism, as well as a variety of online support groups, information for educators and clinicians, recreational opportunities, and regular webinars.

Autism Network International

Autism Network International (ANI) was founded by a group of autistic adults who struggled for acceptance within the larger community, even finding it extremely difficult to break into organizations focused on their own disorder. In response, they started their own autism network, providing a forum for autistic people to share information, peer support, and tips for coping and problem-solving.

ANI is also dedicated to providing social experiences for people with ASD, including an annual autism-centered conference known as Autreat. While many autism conferences are geared toward researchers, service providers, or families, Autreat offers an opportunity for autistic people and those who support them to get together in an autism-friendly environment. (All conference rooms and other spaces are designed to accommodate sensory challenges, for example.)

Global and Regional Asperger Syndrome Partnership

Global and Regional Asperger Syndrome Partnership (GRASP) was launched in 2003 and has branched out into a network of regional groups. Their executive director, advisory board, and board of directors are all people living with autism or another disability.

GRASP collaborates with several high-profile regional, national, and international organizations to address policy and research, and to reach out to economically disadvantaged communities. The organization also has an extensive and comprehensive variety of programs, workshops, and online support groups for adults, teenagers, family members, educators, and clinicians, addressing topics including employment, daily living skills, relationships, socialization, and self-advocacy, among others.