Autistic Self Advocacy: History, Groups, and Programs

If you've spent any time learning about autism, you've heard from doctors, therapists, parents, and teachers, all of whom are eager to discuss and represent the needs of people with autism. You may, however, have heard little from autistic people themselves.

While some people with autism lack the skills (or desire) to speak for themselves, many not only can—but do—have a great deal to share. What's more, autistic adults (with and without help) have formed support groups of all kinds–from social clubs to resource-sharing groups to political policy-oriented action groups.

Prior to 1994, when Asperger's syndrome was added to the Diagnostic Manual (DSM), most people with an autism diagnosis were severely disabled. The criteria for diagnosis included gross deficits in language development, lack of responsiveness to other people, and "bizarre responses to various aspects of the environment."

When Asperger's syndrome and several other related disorders were added to the DSM, however, the "autism spectrum" was created. Now there were people with high intelligence and strong verbal abilities with autism spectrum diagnoses. While these individuals also had significant challenges, they were quite capable of expressing themselves verbally.

Today, while Asperger's syndrome is no longer included in the DSM, the criteria for autism spectrum disorder are very broad. There need be no language impairment at all, and, according to the DSM-5, "Deficits in social-emotional reciprocity must be present (or have been present earlier in development). However, these can range from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction."

Early autism self-advocates (from the 1990s) were mainly individuals with high intelligence, strong verbal skills, and significant strengths in other areas. While they struggled with social communication challenges and sensory dysfunction, they were nevertheless somewhat successful in their careers and/or personal lives. 

Some of these early self-advocates included Donna Williams, Jim Sinclair, and Kathy Grant. These three, among others, formed Autism Network International. This group of autistic adults struggled for acceptance within the larger community, finding it extremely difficult to break into organizations focused on their own disorder. In response, they started their own autism-centered conference called AutRetreat, which continues to meet annually decades later.

According to its website, "The Autistic Self Advocacy Network was founded in 2006 in response to the lack of representation of autistic voices in the national dialogue on autism." ASAN was and continues to be focused largely on political advocacy, leadership development, technical assistance, employment opportunities, publications, community-based participatory research, public policy analysis and education "and other efforts to help inform decision-makers and the public about the autism spectrum and the perspectives of those on it."

Many individuals with autism have taken center stage in recent years with books, videos, and speaking tours. Some of the best known include:

• Temple Grandin, a spokesperson, and advocate for the autism community who has written several books and was the subject of a television movie starring Clare Danes
• John Elder Robison, a writer, and self-advocate whose book Look Me in the Eye was a best-seller several years ago
• Stephen Shore, a speaker, writer, and teacher who has been involved with autistic self-advocacy events and organizations for decades.

If you or an autistic adult in your life is interested in joining a self-advocacy group, it's easy to do. There are opportunities both online and in local areas. A few options include:

• ASAN is still going strong and has chapters across the United States and abroad. 
• The Global and Regional Asperger Syndrome Partnership is also a chapter-based organization; like ASAN it does political advocacy work, but it also a wide range of programs for teens and adults.
• Asperger/Autism Network is a broad-ranging non-profit based in Massachusetts. It has a major program dedicated to self-advocacy and offers social, support, and recreational opportunities for adults on the spectrum.

If you're looking for a local organization and can't find an option through the above links, consider reaching out to your local Autism Society chapter. Often, local members of the Autism Society have directories and information that can help you find the group you're looking for.