Autistic Self Advocacy Network

The Autistic Self Advocacy Network (ASAN) is a 501(c)(3) nonprofit advocacy organization run by and for individuals on the autism spectrum. ASAN holds that the goal of autism advocacy should be a world in which autistic people enjoy the same access, rights, and opportunities as all other people, and that autistic voices should be included in any public discourse on autism, whether in public policy, mass media, or other venues. ASAN is based in Washington, D.C.[6]

Autistic Self Advocacy Network
ASAN logo
Motto"Nothing About Us, Without Us!"
FoundedNovember 13, 2006 (2006-11-13)[1]
FoundersAri Ne'eman and Scott Michael Robertson
TypeNonprofit organization
26-1270198[2]
Legal status501(c)(3)[2]
FocusPublic policy
HeadquartersWashington, D.C., U.S.
MethodPublications, policy advocacy
Board Chair
Sarah Schneider[3]
Executive Director
Julia Bascom[4]
Revenue (2018)
$1,171,575[5]
Expenses (2018)$789,140[5]
Employees (2018)
10[5]
Volunteers (2018)
55[5]
Websiteautisticadvocacy.org
Autism rights movement
Organizations

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".[7] ASAN's mission statement says that autistic people are equal to everyone else, and important and necessary members of society.[8] ASAN also maintains a network of 25 local chapters based in different states, with three chapter affiliates in Canada and Australia.[9][10]

History

The Autistic Self Advocacy Network was co-founded on November 13, 2006, by its former president, Ari Ne'eman,[11] and former Board of Trustees member and Vice Chair of Development, Scott Michael Robertson. By 2009, ASAN had 15 chapters.[12]

ASAN's early work mostly focused on fighting the use of aversives, restraint, and seclusion in special education;[13][14][15] in December 2007, they spoke out publicly against Autism Speaks,[16] 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.[17][18] This counter-campaign[19] put ASAN on the public's radar and has been referred to as the neurodiversity movement's coming of age.[20] ASAN continues to protest Autism Speaks.[21]

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.[22] Bascom now holds the title of ASAN President.

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.[23]

Activism

The Autistic Self Advocacy Network promotes autism awareness and acceptance through public policy initiatives,[24] research reform[25] and cross-disability collaboration, community outreach,[26] college advocacy,[27] publishing,[28][29] and employment initiatives.[30] ASAN has also supported initiatives to raise the minimum wage.[31] ASAN has opposed federal contractors paying disabled people sub-minimum wage in 2014.[32] Their campaign to prevent workers from being paid sub-minimum wage by federal contractors was successful.[6] In addition, ASAN has also been involved in helping businesses hire autistic individuals.[33]

Scientific issues

ASAN is the Autistic community partner for the Academic Autistic Spectrum Partnership In Research and Education (AASPIRE).[34] The AASPIRE project brings together the academic community and the Autistic community,[35] 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.[36]

In 2018, ASAN published an open letter to 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.[37] ASAN also officially supports Augmentative and alternative communication in a position statement,[38] and lists Amy Sequenzia and Ben McGann, members of its Board of Trustees who communicate by FC.[3]

Special calendar events

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.[39][40] 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.[40] The vigils honor people with all kinds of disabilities.[40]

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.[41][42]

Publications

ASAN published a book for autistic people in college, called Navigating College Handbook.[43] The book was considered "the first of its kind".[43] In 2012, ASAN began the annual Autism Campus Inclusion (ACI) Summer Institute,[44] a week-long workshop teaching Autistic students to engage in activism and advocacy on their campuses.[45] Disability rights activist Lydia Brown is an alumn of the leadership program.[46]

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[47] and an anthology,[48] both founded and organized by Julia Bascom. Later in 2012, ASAN also published the anthology Loud Hands: Autistic People, Speaking,[49] which features several dozen essays by autistic neurodiversity activists including Jim Sinclair and Ari Ne'eman.[49]

Work with Sesame Workshop

In 2015, ASAN worked with Sesame Workshop to create an autistic character for Sesame Street, named Julia.[50] In August 2019, ASAN announced it had ended its partnership with Sesame Street because it produced materials that combine "incredibly harmful information 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.[51][52][53][54][55]

Opposition to Kevin and Avonte's Law

ASAN opposed Kevin and Avonte's Law, which would have provided money to fight wandering behavior in autistic children. According to an editorial in Vox, ASAN was originally neutral, but after several modifications were made, including tracking people to prevent them from harming others, ASAN and several other disabilities rights groups opposed the proposed law over privacy concerns. Congress did not pass Kevin and Avonte's Law.[56] Ne'eman also said that wandering behavior among autistics was caused by physical and sexual abuse, and therefore the law would ignore the cause of the wandering. In response, Amy S.F. Lutz pointed out that according to the study used for the argument, most autistic children that wander actually displayed positive emotions during their wandering. Lutz also claimed that the privacy hysteria was "baseless", as wandering had been an official diagnosis for five years, and there are a wide variety of communication devices to put on children are available with no retaliation. Kevin and Avonte's law would simply have provided more funding to make those devices available to more people.[57] Later, a revised version of Kevin and Avonte's Law passed which did not include the language ASAN had objected to.[58]

Criticism

In response to a local chapter which protested billboards in Seattle that advocated "wiping out" autism, Arzu Forough of the organization Washington Autism Alliance & Advocacy claimed that coverage of this event could have misled people about the effects of autism. She claimed that ASAN promoted the idea that Autistics have trivial difficulties, obscuring the level of support that some autistics need.[59]

In 2017, supporters of ASAN criticized actor William Shatner for his support for Autism Speaks. Shatner responded by claiming “I supported an awareness day hashtag that appears to be scorned by a group that doesn’t want awareness.” Shatner described his views on ASAN's activism by stating that instead of making defeating Autism Speaks their main goal, ASAN should advocate for its own views.[60]

Bruce Hall, a legally blind photographer, has opposed cuts to disability services that were endorsed by ASAN, claiming that more services are needed.[61]

See also

References
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  2. "Autistic Self Advocacy Network Inc". Tax Exempt Organization Search. Internal Revenue Service. Retrieved January 5, 2020.
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  4. "Staff". Autistic Self Advocacy Network. Retrieved January 5, 2020.
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