Founded | November 13, 2006 [1] |
---|---|
Founders | Ari Ne'eman and Scott Michael Robertson |
Type | Nonprofit organization |
26-1270198 [2] | |
Legal status | 501(c)(3) [2] |
Focus | Public policy |
Headquarters | Washington, D.C., U.S. |
Method | Publications, policy advocacy |
Victoria M. Rodríguez-Roldán [3] | |
Julia Bascom [4] | |
Revenue (2018) | $1,171,575 [5] |
Expenses (2018) | $789,140 [5] |
Employees (2018) | 10 [5] |
Volunteers (2018) | 55 [5] |
Website | autisticadvocacy |
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.
Neurodiversity paradigm |
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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". [6] ASAN's mission statement says that autistic people are equal to everyone else and are important and necessary members of society. [7] ASAN also maintains a network of 25 local chapters based in different states, with three chapter affiliates in Canada and Australia. [8] [9]
The Autistic Self Advocacy Network was co-founded on November 13, 2006, by its former president, Ari Ne'eman, [10] and former Board of Trustees member and Vice Chair of Development, Scott Michael Robertson. By 2009, ASAN had 15 chapters. [11]
ASAN's early work mostly focused on fighting the use of aversives, restraint, and seclusion in special education; [12] [13] [14] in December 2007, they spoke out publicly against Autism Speaks, [15] 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. [16] [17] This counter-campaign [18] put ASAN on the public's radar and has been referred to as the neurodiversity movement's coming of age. [19] ASAN continues to protest Autism Speaks. [20]
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. [21] 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. [22]
The Autistic Self Advocacy Network promotes autism acceptance through public policy initiatives, [23] research reform, [24] cross-disability collaboration, community outreach, [25] college advocacy, [26] publishing, [27] [28] and employment initiatives. [29] ASAN has also supported initiatives to raise the minimum wage. [30] ASAN has opposed federal contractors paying disabled people sub-minimum wage in 2014. [31] Their campaign to prevent workers from being paid sub-minimum wage by federal contractors was successful. [32] In addition, ASAN has also been involved in helping businesses hire autistic individuals. [33]
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]
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. [37]
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. [38] ASAN also lists two facilitated communication users as members of its board of trustees. [3]
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]
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, [48] which features several dozen essays by autistic neurodiversity activists including Jim Sinclair and Ari Ne'eman. [48]
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]
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." [54] As a result, Congress did not pass Kevin and Avonte's Law. [55] Later, a revised version of Kevin and Avonte's Law passed which did not include the language ASAN had objected to. [56]
In 2013, a local ASAN chapter successfully protested for the removal of billboards by the Seattle Children's Hospital 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. [57]
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. [58] 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. [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]
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 degree of coincidence between autism and intellectual disability, are all matters of current scientific controversy as well as inquiry. There is also more sociopolitical debate as to whether autism should be considered a disability on its own.
Neurodiversity is a framework for understanding human brain function and mental illness. It argues that diversity in human cognition is normal and that some conditions classified as mental disorders are differences and disabilities that are not necessarily pathological.
The autism rights movement, also known as the autistic acceptance movement, is a social movement allied with disability rights that emphasizes a neurodiversity paradigm, viewing autism as a disability with variations in the human brain rather than as a disease to be cured. The movement advocates for several goals, including greater acceptance of autistic traits and behaviors; reforms of services - i.e. services that focus on improving quality of life and well-being instead of suppression and masking of autistic traits that are adaptive or not harmful or imitations of social behaviors of allistic (non-autistic) peers ; the creation of social networks and events that allow autistic people to socialize on their own terms; and the recognition of the autistic community as a minority group.
Jim Sinclair is an American autistic activist and writer who is widely considered the founder of the autism rights movement. Sinclair, along with Kathy Lissner Grant and Donna Williams, formed Autism Network International. Sinclair became the original coordinator of ANI. Sinclair is an advocate for the anti-cure position on autism, arguing that autism is an integral part of a person's identity and should not be cured.
Autistic Pride Day is a pride celebration for autistic people held on 18 June each year. Autistic pride recognises the importance of pride for autistic people and its role in bringing about positive changes in the broader society.
The Association for Behavior Analysis International (ABAI) is a nonprofit organization dedicated to promoting behavior analysis. The organization has over 9,000 members. The group organizes conferences and publishes journals on the topic of applied behavior analysis (ABA). ABAI has issued detailed, specific position papers intended to guide practitioners of ABA. The ABAI publishes six scholarly journals including The Psychological Record and their primary organ, Perspectives on Behavior Science, formerly The Behavior Analyst. They also publish an informational journal, Education and Treatment of Children, describing practical treatment of children with behavioral problems.
Self-advocacy is the act of speaking up for oneself and one's interests. It is used as a name for civil rights movements and mutual aid networks for people with intellectual and developmental disabilities. The term arose in the broader civil rights movements of the 1960s and 1970s, and is part of the disability rights movement. Today there are self-advocacy organizations across the world.
Wrong Planet is an online community for "individuals with Autism, Asperger's Syndrome, ADHD, PDDs, and other neurological differences". The site was started in 2004 by Dan Grover and Alex Plank and includes a chatroom, a forum, and articles describing how to deal with daily issues. Wrong Planet has been referenced by the mainstream U.S. media. Wrong Planet comes up in the special education curriculum of many universities in the United States. A page is dedicated to Wrong Planet and its founder in Exceptional Learners: Introduction to Special Education.
Societal and cultural aspects of autism or sociology of autism come into play with recognition of autism, approaches to its support services and therapies, and how autism affects the definition of personhood. The autistic community is divided primarily into two camps; the autism rights movement and the Pathology paradigm. The pathology paradigm advocates for supporting research into therapies, treatments, and/or a cure to help minimize or remove autistic traits, seeing treatment as vital to help individuals with autism, while the neurodiversity movement believes autism should be seen as a different way of being and advocates against a cure and interventions that focus on normalization, seeing it as trying to exterminate autistic people and their individuality. Both are controversial in autism communities and advocacy which has led to significant infighting between these two camps. While the dominant paradigm is the pathology paradigm and is followed largely by autism research and scientific communities, the neurodiversity movement is highly popular among most autistic people, within autism advocacy, autism rights organizations, and related neurodiversity approaches have been rapidly growing and applied in the autism research field in the last few years.
Autism Speaks Inc. is an American non-profit autism awareness organization and the largest autism research organization in the United States. It sponsors autism research and conducts awareness and outreach activities aimed at families, governments, and the public. It was founded in February 2005 by Bob Wright and his wife Suzanne, a year after their grandson Christian was diagnosed with autism. The same year as its founding, the organization merged with Autism Coalition for Research and Education. It then merged with the National Alliance for Autism Research in 2006 and Cure Autism Now in 2007.
Ari Daniel Ne'eman is an American disability rights activist and researcher who co-founded the Autistic Self Advocacy Network in 2006. On December 16, 2009, President Barack Obama announced that Ne'eman would be appointed to the National Council on Disability. After an anonymous hold was lifted, Ne'eman was unanimously confirmed by the United States Senate to serve on the Council on June 22, 2010. He chaired the council's Policy & Program Evaluation Committee making him the first autistic person to serve on the council. In 2015, Ne'eman left the National Council on Disability at the end of his second term. He currently serves as a consultant to the American Civil Liberties Union. As of 2019, he also is a Ph.D. candidate in Health Policy at Harvard University.
Communication Shutdown is a global fundraiser on behalf of autism-related organizations in more than 40 countries. Beginning in 2010, the day is commemorated by individuals voluntarily refraining from using social media such as Facebook or Twitter for one day on 1 November.
Too Sane for This World is a documentary series that was directed by William Davenport. The first film, Too Sane for This World, was released on September 1, 2011, and features an introduction by Dr. Temple Grandin. The second documentary, Citizen Autistic, was released on April 1, 2013.
William Davenport is a documentary filmmaker, musician, publisher, writer, teacher and autism activist. He is best known for his documentary films about autism, also for his work as the publisher of Unsound magazine, and as the founding member of the experimental/noise band Problemist.
Lydia X. Z. Brown is an American autistic disability rights activist, writer, attorney, and public speaker who was honored by the White House in 2013. They are the chairperson of the American Bar Association Civil Rights & Social Justice Disability Rights Committee. They are also Policy Counsel for Privacy & Data at the Center for Democracy & Technology, and Director of Policy, Advocacy, & External Affairs at the Autistic Women & Nonbinary Network. In 2022, they unsuccessfully ran for the Maryland House of Delegates in District 7A, losing to state delegate Kathy Szeliga and delegate-elect Ryan Nawrocki.
Julia Bascom is an American autism rights activist. She is the current executive director of the Autistic Self Advocacy Network (ASAN) and replaced Ari Ne'eman as president of ASAN in early 2017.
In a Different Key: The Story of Autism is a 2016 non-fiction book by John Donvan and Caren Zucker. It discusses the history of autism and autism advocacy, including issues such as the Refrigerator mother theory and the possibility of an autism epidemic. Donald Triplett, perhaps the first person diagnosed with autism, and psychiatrist Leo Kanner are also covered, as is the ongoing debate concerning the neurodiversity movement, especially with respect to autistic people with more apparent support needs.
Julia is a fictional character on the PBS/HBO children's educational television series Sesame Street. She is known for being the first Sesame Street character diagnosed with autism. Julia is a friendly four-year-old girl who enjoys bonding with her supportive family and her friends on Sesame Street. She first appeared in 2015 in an online autism awareness initiative from Sesame Workshop, entitled Sesame Street and Autism: See Amazing in All Children. Julia later made her first appearance on television series on Episode 4715, which originally aired on April 2, 2017.
Citizen Autistic is a 2013 documentary film directed by William Davenport exploring the advocacy work of autism rights activists. Citizen Autistic features interviews with autistic activists including Ari Ne'eman, co-founder and former president of the Autistic Self Advocacy Network, and Zoe Gross, creator of the Disability Day of Mourning annual vigils held in honor of filicide victims with disabilities. The documentary covers topics important to neurodiversity such as the debate over whether researchers should seek a cure for autism and controversies surrounding the nonprofit organization Autism Speaks and the Judge Rotenberg Center, a residential institution known for using electric skin shock aversive treatment as a form of behavioral modification.
Morénike Giwa Onaiwu is an American educator, author, and autism and HIV advocate. Alongside E. Ashkenazy and Lydia Brown, Onaiwu is an editor of All the Weight of Our Dreams, an anthology of art and writing entirely by autistic people of color published by the Autism Women's Network in June 2017.