Autistic Self Advocacy Network

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Autistic Self Advocacy Network
Autistic Self Advocacy Network symbol.gif
ASAN logo
FoundedNovember 13, 2006; 14 years ago (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
Sarah Schneider[3]
Julia Bascom[4]
Revenue (2018)
$1,171,575[5]
Expenses (2018)$789,140[5]
Employees (2018)
10[5]
Volunteers (2018)
55[5]
Websiteautisticadvocacy.org

The Autistic Self Advocacy Network (ASAN) is a 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. ASAN has protested Autism Speaks for promoting policies that are harmful to autistic people, for promoting stigma against autistic people, and for systematically excluding autistic people from debates about issues that affect them. ASAN has also protested the Judge Rotenberg Educational Center, a school for autistic and special needs students that has been condemned by the United Nations for torture. ASAN is based in Washington, D.C., where it advocates for the United States government to adopt legislation and policies that positively impact autistic people.[6]

Services[edit]

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[edit]

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[edit]

The Autistic Self Advocacy Network promotes autism 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[edit]

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 lists two facilitated communication users as members of its Board of Trustees.[3]

Special calendar events[edit]

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.[38][39] 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.[39] The vigils honor people with all kinds of disabilities.[39]

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.[40][41]

Publications[edit]

ASAN published a book for autistic people in college, called Navigating College Handbook.[42] The book was considered "the first of its kind".[42] In 2012, ASAN began the annual Autism Campus Inclusion (ACI) Summer Institute,[43] a week-long workshop teaching Autistic students to engage in activism and advocacy on their campuses.[44] Disability rights activist Lydia Brown is an alumn of the leadership program.[45]

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

Work with Sesame Workshop[edit]

In 2015, ASAN worked with Sesame Workshop to create an autistic character for Sesame Street, named Julia.[49] 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.[50][51][52][53][54]

Opposition to Kevin and Avonte's Law[edit]

ASAN opposed Kevin and Avonte's Law, which would have provided money to fight wandering behavior in autistic children. ASAN was originally neutral, but after several modifications were made, including an amendment that would have allowed for the installation of tracking devices on people with disabilities, ASAN and several other disabilities rights groups opposed the proposed law over privacy concerns. Additionally, Ne'eman said that "The use of the 'wandering' label on adults will enable abuse and restrict the civil rights of Americans with Disabilities" and that it would "make it easier for school districts and residential facilities to justify restraint and seclusion in the name of treatment."[55] As a result, Congress did not pass Kevin and Avonte's Law.[56] Later, a revised version of Kevin and Avonte's Law passed which did not include the language ASAN had objected to.[57]

Protests[edit]

Autism Speaks[edit]

In 2009, ASAN and over 60 other disability advocacy groups condemned Autism Speaks for lack of representation, and for exploitative and unethical practices.[58] Before 2015, John Elder Robison was the only autistic person ever to serve on Autism Speaks board of directors. He later resigned in protest against the organization.[59] In 2015, Autism Speaks made a commitment to provide better representation by appointing two autistic people to its 26 member board of directors.[60][61] ASAN criticized this move as insufficient, citing: continued systematic exclusion of autistic people from positions of leadership at Autism Speaks; continued misuse of funds, particularly to support research for a cure rather than to support for autistic people; and continued use of harmful messages in advertising campaigns designed to promote stigma against autistic people. ASAN stated: "Until Autism Speaks makes significant changes to their practices and policies of fighting against the existence of autistic people, these appointments to the board are superficial changes."[60]

Judge Rotenberg Center[edit]

ASAN has strongly opposed the Judge Rotenberg Center, a school that has been condemned by the United Nations for torture. In 2012, they published a seven part series called "The Judge Rotenberg Center on Trial", which covered a civil lawsuit brought against the center by the mother of Andre McCollins, a student who was abused there.[62] In 2020, ANAN supported the FDA's ban on the Graduated Electronic Decelerator, an electric shock device that the Judge Rotenberg Center used to torture its students.[63] ASAN has also been critical of organizations that have supported the practices of the Judge Rotenberg Center, such as the Association for Behavior Analysis International.[64]

Criticism[edit]

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.[65]

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.[66]

Bruce Hall, a legally blind photographer, has opposed cuts to disability services that were endorsed by ASAN, claiming that more services are needed.[67]

See also[edit]

References[edit]

  1. ^ "Autistic Self-Advocacy Network Inc." New Jersey Division of Revenue and Enterprise Services. Retrieved January 5, 2020.
  2. ^ a b "Autistic Self Advocacy Network Inc". Tax Exempt Organization Search. Internal Revenue Service. Retrieved January 5, 2020.
  3. ^ a b "Leadership". Autistic Self Advocacy Network. Retrieved 21 July 2019.
  4. ^ "Staff". Autistic Self Advocacy Network. Retrieved January 5, 2020.
  5. ^ a b c d e "Form 990: Return of Organization Exempt from Income Tax". Autistic Self Advocacy Network Inc. Internal Revenue Service. December 31, 2018.
  6. ^ a b Somashekhar, Sandhya (20 July 2015). "How Autistic Adults Banded Together to Start a Movement". The Washington Post. Retrieved 1 March 2016.
  7. ^ Sommer, Allison Kaplan (26 January 2015). "Autistic Self-advocate and Obama Appointee Ari Ne'eman Wins $100,000 Ruderman Prize". Haaretz. Retrieved 1 March 2016.
  8. ^ Network, Autistic Self Advocacy. "About". Autistic Self Advocacy Network.
  9. ^ Johnson, James A. (20 March 2012). "Gifted, Challenged". Newport Daily News. Retrieved 1 March 2016 – via Newspaper Archive.
  10. ^ Autistic Self Advocacy Network. "Chapters". autisticadvocacy.org. Archived from the original on 2 April 2016. Retrieved 1 April 2016.
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  12. ^ Wallis, Claudia (2 November 2009). "A Powerful Identity, a Vanishing Diagnosis". The New York Times. Retrieved 1 March 2016.
  13. ^ Network, Autistic Self Advocacy. "Testimony on Aversives & Restraints". Autistic Self Advocacy Network.
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  15. ^ Diament, Michelle (5 October 2010). "Senators Propose Revised Restraint And Seclusion Bill". Disability Scoop. Retrieved 1 March 2016.
  16. ^ Network, Autistic Self Advocacy. "Comments at November 30, 2007 IACC Meeting". Autistic Self Advocacy Network.
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  18. ^ Solomon, Andrew (25 May 2008). "The Autism Rights Movement". New York Magazine. Retrieved 1 March 2016.
  19. ^ Network, Autistic Self Advocacy. "An Urgent Call to Action: Tell NYU Child Study Center to Abandon Stereotypes Against People With Disabilities". Autistic Self Advocacy Network.
  20. ^ Kras, Joseph F. (2010). "The 'Ransom Notes' Affair: When the Neurodiversity Movement Came of Age". Disability Studies Quarterly. 30 (1). Retrieved 1 March 2016.
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  27. ^ "Navigating College". www.navigatingcollege.org.
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  30. ^ Network, Autistic Self Advocacy. "Employment". Autistic Self Advocacy Network.
  31. ^ Fleischer, Chris (27 July 2014). "Advocacy Groups Stand Against 'Sub-Minimum' Wage for Workers with Disabilities". Pittsburgh Tribune Review. Retrieved 1 March 2016 – via EBSCO.
  32. ^ Ne'eman, Ari (1 February 2016). "How We're Failing Jews With Disabilities". Forward. Retrieved 1 March 2016.
  33. ^ Moffitt, Susan (21 July 2011). "Advocacy Group Boosts Autism Employment Prospects". Autism Key. Retrieved 1 March 2016.
  34. ^ "AASPIRE homepage". Archived from the original on 2008-05-19. Retrieved 2008-08-08.
  35. ^ Wood, Janice (2012). "Adults with Autism Report Shortcomings in Health Care". Psych Central. Retrieved 1 March 2016.
  36. ^ Miller, Michael E. (17 September 2015). "The GOP's Dangerous 'Debate' On Vaccines and Autism". The Washington Post. Retrieved 1 March 2016.
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  38. ^ "ASAN: Day of Mourning on March 1st". Archived from the original on 5 May 2013. Retrieved 3 May 2013.
  39. ^ a b c Young, Lesley (27 March 2012). "Disability Advocates Alarmed By Parents Who Kill". Disability Scoop. Retrieved 1 March 2016.
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  41. ^ Diament, Michelle (1 April 2013). "With Autism Awareness Month Comes Push For Acceptance". Disability Scoop. Retrieved 1 March 2016.
  42. ^ a b Diament, Michelle (25 October 2011). "Handbook Offers College Advice For Students With Autism". Disability Scoop. Retrieved 1 March 2016.
  43. ^ Network, Autistic Self Advocacy. "ASAN is Now Accepting Applications for the 2013 Summer Leadership Academy". Autistic Self Advocacy Network.
  44. ^ "2016 Autism Campus Inclusion (ACI) Leadership Academy". Graduate School of Education and Human Development. George Washington University. 19 January 2016. Retrieved 1 March 2016.
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  57. ^ Congress, US. "117 S.2070 – Kevin and Avonte's Law of 2017". Congress.gov. Retrieved 14 February 2019.
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  67. ^ Clements, Tom. "Neurodiversity is failing the most vulnerable". www.spiked-online.com. Retrieved 7 April 2020.

External links[edit]