Autistic Self Advocacy Network

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### Validation-Status

Valid; run by and supports autistic adults

### Official Website

autisticadvocacy.org

The **Autistic Self Advocacy Network** (**ASAN**) is an American 501(c)(3) nonprofit advocacy organization run by and for individuals on the autism spectrum. ASAN advocates for the inclusion of autistic people in decisions that affect them, including: legislation, depiction in the media, and disability services.

The organization is based in Washington, D.C., where it advocates for the United States government to adopt legislation and policies that positively impact autistic people.

## Services

The Autistic Self Advocacy Network provides community organizing, self-advocacy support, and public policy advocacy and education for autistic youth and adults, as well as working to improve the general public's understanding of autism and related conditions. The organization is "run by and for autistic adults". ASAN's mission statement says that autistic people are equal to everyone else and are important and necessary members of society. ASAN also maintains a network of 25 local chapters based in different states, with three chapter affiliates in Canada and Australia.

## History

The Autistic Self Advocacy Network was co-founded on November 13, 2006, by its former president, Ari Ne'eman, and former Board of Trustees member and Vice Chair of Development, Scott Michael Robertson. By 2009, ASAN had 15 chapters.

ASAN's early work mostly focused on fighting the use of aversives, restraint, and seclusion in special education; in December 2007, they spoke out publicly against Autism Speaks, and against the NYU Child Study Center's Ransom Notes ad campaign, which compared autism, ADHD, OCD, and eating disorders to kidnappers holding children hostage. This counter-campaign put ASAN on the public's radar and has been referred to as the neurodiversity movement's coming of age. ASAN continues to protest Autism Speaks.

On July 18, 2016, Ari Ne'eman announced that he would resign as president of the Autistic Self Advocacy Network, to be replaced by Julia Bascom in early 2017. Bascom now holds the title of ASAN Executive Director.

In 2020, ASAN published a statement supporting the FDA's ban on the electric skin shock devices used to torture children and adults with disabilities at the Judge Rotenberg Center.

## Activism

The Autistic Self Advocacy Network promotes autism acceptance through public policy initiatives, research reform, cross-disability collaboration, community outreach, college advocacy, publishing, and employment initiatives. ASAN has also supported initiatives to raise the minimum wage. ASAN has opposed federal contractors paying disabled people sub-minimum wage in 2014. Their campaign to prevent workers from being paid sub-minimum wage by federal contractors was successful. In addition, ASAN has also been involved in helping businesses hire autistic individuals.

### Scientific issues

ASAN is the autistic community partner for the Academic Autistic Spectrum Partnership In Research and Education (AASPIRE). The AASPIRE project brings together the academic community and the autistic community, in a research format called community-based participatory research, to develop and perform research projects relevant to the needs of autistic adults.

ASAN has been critical of statements made which falsely link vaccines and autism. According to ASAN, research suggests that autism has always existed at its current levels in the population.

Between 2009 and 2012, ASAN members lobbied the American Psychiatric Association's workgroup on neurodevelopmental disorders drafting new diagnostic criteria for autism for the fifth edition of the *Diagnostic and Statistical Manual of Mental Disorders* (DSM-5). The advocates focused on "protecting access to diagnosis" and support, blocking proposals they deemed harmful, and "improving disparities in diagnosis for marginalized groups", while encouraging the shift towards a unified diagnosis of autism spectrum disorder. A formulation proposed by ASAN regarding the possibility that some autistic people learn to mask autistic characteristics is reflected in the final criteria.

In 2018, ASAN published an open letter to the American Speech–Language–Hearing Association opposing their position statement that facilitated communication (FC) and rapid prompting method (RPM) are scientifically discredited, claiming that more research on those methods is worthwhile. ASAN also lists two facilitated communication users as members of its board of trustees.

### Special calendar event

ASAN's chapters work collaboratively with the national branch on nationwide projects; an example of this is Day of Mourning, an event on March 1 where local chapters of ASAN, as well as independent groups, host candlelight vigils in remembrance of disabled people murdered by their caregivers. The first campaign was suggested by Zoe Gross of California, who had heard of a case where a young autistic man was murdered by his mother, who later committed suicide. The vigils honor people with all kinds of disabilities.

In April 2013, as part of Autism Acceptance Month – a counter-movement against the cure-focused Light It Up Blue and Autism Awareness Month movements – ASAN launched an Autism Acceptance Month web site.

### Publications

ASAN published a book for autistic people in college, called *Navigating College Handbook*. The book was considered "the first of its kind". In 2012, ASAN began the annual Autism Campus Inclusion (ACI) Summer Institute, a week-long workshop teaching autistic students to engage in activism and advocacy on their campuses. Disability rights activist Lydia Brown is an alumn of the leadership program.

The Loud Hands Project, a transmedia publishing effort for curating and hosting submissions by autistic people about voice, has also been active during 2012, in the form of a kickstarter campaign and an anthology, both founded and organized by Julia Bascom. Later in 2012, ASAN also published the anthology *Loud Hands: Autistic People, Speaking*, which features several dozen essays by autistic neurodiversity activists including Jim Sinclair and Ari Ne'eman.

### Work with Sesame Workshop

In 2015, ASAN worked with Sesame Workshop to create an autistic character for *Sesame Street*, named Julia. In August 2019, ASAN announced it had ended its partnership with *Sesame Street* after it began to associate with Autism Speaks. ASAN described the materials produced is association with Autism Speaks as "incredibly harmful information [mixed] with useful information with little to no distinction", including theories and narratives about autism that are not scientifically supported, and medical advice not backed by scientific research. ASAN reports that it discussed the harmful implications of these ideas with the producers of *Sesame Street*, and that the producers acknowledged that the ideas were harmful but would not reconsider their collaboration with Autism Speaks.

## References

1. ↑ https://en.wikipedia.org/wiki/Autistic\_Self\_Advocacy\_Network