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The Autistic Self Advocacy Network (ASAN) is an American 501(c)(3) nonprofit advocacy organization run by and for individuals on the
autism spectrum The autism spectrum, often referred to as just autism or in the context of a professional diagnosis autism spectrum disorder (ASD) or autism spectrum condition (ASC), is a neurodevelopmental condition (or conditions) characterized by difficulti ...
. 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 Public policy is an institutionalized proposal or a decided set of elements like laws, regulations, guidelines, and actions to solve or address relevant and real-world problems, guided by a conception and often implemented by programs. Public ...
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 President most commonly refers to: *President (corporate title) * President (education), a leader of a college or university * President (government title) President may also refer to: Automobiles * Nissan President, a 1966–2010 Japanese ...
, 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 In psychology, aversives are unpleasant stimuli that induce changes in behavior via negative reinforcement or positive punishment. By applying an aversive immediately before or after a behavior the likelihood of the target behavior occurring in th ...
, restraint, and seclusion in
special education Special education (known as special-needs education, aided education, exceptional education, alternative provision, exceptional student education, special ed., SDC, or SPED) is the practice of educating students in a way that accommodates th ...
; 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 Community-based participatory research (CBPR) is a partnership approach to research that equitably involves community members, organizational representatives, researchers, and others in all aspects of the research process, with all partners in the p ...
, 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. In 2018, ASAN published an open letter to the
American Speech–Language–Hearing Association The American Speech–Language–Hearing Association (ASHA) is a professional association for speech–language pathologists, audiologists, and speech, language, and hearing scientists in the United States The United States of Ame ...
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 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. 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 Neurodiversity refers to diversity in the human brain and cognition, for instance in sociability, learning, attention, mood and other mental functions. It was coined in 1998 by sociologist Judy Singer, who helped popularize the concept ...
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 ''Sesame Street'' is an American educational children's television series that combines live-action, sketch comedy, animation and puppetry. It is produced by Sesame Workshop (known as the Children's Television Workshop until June 2000 ...
'', 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 ixedwith 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.


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. 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." As a result, Congress did not pass Kevin and Avonte's Law. Later, a revised version of Kevin and Avonte's Law passed which did not include the language ASAN had objected to.


Protests

In 2013, a local ASAN chapter successfully protested for the removal of billboards by the
Seattle Children's Hospital Seattle Children's, formerly Children's Hospital and Regional Medical Center, formerly Children's Orthopedic Hospital, is a children's hospital in the Laurelhurst neighborhood of Seattle, Washington. The hospital specializes in the care of infa ...
that advocated "wiping out" autism. The protest was followed by numerous media requests to the chapter regarding the autism rights movement. Arzu Forough of the organization Washington Autism Alliance & Advocacy claimed that coverage could have misled people about the effects of autism. According to Forough, such coverage could promote the idea that autistic people have only trivial difficulties, obscuring the level of support that some autistic people need.


Autism Speaks

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. In 2009, ASAN and over 60 other disability advocacy groups condemned Autism Speaks for lack of representation and for exploitative and unethical practices. Before 2015, John Elder Robison was the only autistic person ever to serve on Autism Speaks's board of directors. He later resigned in protest against the organization. In 2015, Autism Speaks made a commitment to provide better representation by appointing two autistic people to its 26-member board of directors. 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."


See also

* Autism rights movement *
Controversies in autism Diagnoses of autism have become more frequent since the 1980s, which has led to various controversies about both the cause of autism and the nature of the diagnoses themselves. Whether autism has mainly a genetic or developmental cause, and the ...
*
Neurodiversity Neurodiversity refers to diversity in the human brain and cognition, for instance in sociability, learning, attention, mood and other mental functions. It was coined in 1998 by sociologist Judy Singer, who helped popularize the concept ...
*
List of autism-related topics The following outline is provided as an overview of and topical guide to autism: Autism – neurodevelopmental disorder that affects social interaction and communication, and involves restricted and repetitive behavior. What ''type'' o ...


References


External links

* {{authority control Autism-related organizations in the United States 2006 establishments in the United States Organizations established in 2006 Mental health organizations in Washington, D.C.