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Autistic rights movement
Disability rights movement From Wikipedia, the free encyclopedia
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The autistic rights movement, also known as the autism acceptance movement, is a social movement allied with the disability rights movement. It emphasizes the neurodiversity paradigm, viewing autism as a set of naturally occurring variations in human cognition, a cognitive difference with both strengths and weaknesses, rather than as a disease to be cured or a medical disorder.[2] This paradigm contradicts and diverges from the medical model of disability, without opposing all aspects of it.[3][4][5]
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Central to the autistic rights movement's beliefs is the right to self-determine if one is part of the autism community, that autistic people should be seen as the primary voice for autistic people, and that autistic people have the final say in what language should be used when talking about autism. A common motto used by the autistic rights movement, borrowed from the disability rights movement, is the phrase "nothing about us without us".[6]
Autistic rights movement advocates strive for widespread acceptance of people with autism, as well as the traits and behaviors (e.g. stimming, lack of eye contact, and special interests) associated with autism, for autistic people to socialize on their own terms,[7] and to mitigate the double empathy problem.[8][9] The movement seeks to reform, advance, and foster autism-oriented support services, interventions or therapies in accordance with neurodiversity principles to emphasize coping skills for challenging situations,[10] promote adaptive skills, and promote psychological well-being and mental health, through incorporating voices and perspectives of autistic people in intervention reforms, advancements, and developments.[11][12][13][14][15][16]
The movement criticizes therapies and interventions that—implicitly or explicitly, unintentionally or intentionally—encourage masking behaviors associated with autism and imitating neurotypical social behaviors,[17][18] as higher tendencies of camouflaging, autistic masking, or passing as neurotypical are associated with worse mental health outcomes according to most recent studies and multiple systematic reviews[19][20][21] and some autistic adults who experienced some forms of behavioral interventions reported adverse effects such as detrimental effects on their mental health due to increased or excessive camouflaging or masking.[22][23][24]
The movement also advocates for autistic people to be recognized as a minority group rather than as having a disorder. Within the autistic rights movement, autism is often compared to different variations in human biology not categorized as disorders, such as homosexuality.[25]
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History
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1980s–1990s: Autistic-run organizations, newsletters, and conferences
Jim Sinclair is credited as the first person to communicate the autistic rights perspective.[2] In the early 1990s, Sinclair frequently participated in autism conferences led by parent-centric organizations but found them "overwhelmingly hostile from both sensory and emotional standpoints".[26] In 1992, Sinclair co-founded the Autism Network International (ANI) with Donna Williams and Kathy Grant, an organization that publishes newsletters "written by and for autistic people."
The ANI newsletter, Our Voice, had its first issue distributed online in November 1992 to an audience of primarily neurotypical professionals and parents of young autistic children. The number of autistic people in the organization increased over the years, and ANI eventually became a communication network for like-minded autistic people.[27] Sinclair wrote the essay "Don't Mourn for Us" (1993) in the ANI newsletter (Volume 1, Number 3) with an anti-cure perspective on autism.[28] Some[like whom?] have considered the essay a touchstone for the autistic rights movement, and it has been mentioned in The New York Times[29] and New York Magazine.[30]
ANI established the yearly retreat "Autreat" in 1996. Autreat was a retreat and conference held in the United States specifically for autistic people[31] and was held every year from 1996 to 2013, except in 2001. The theme of the first conference in 1996 was "Celebrating Autistic Culture", and it had close to 60 participants. It was hosted at Camp Bristol Hills in Canandaigua, New York.[32] The success of Autreat later inspired similar retreats, such as the Association for Autistic Community's conference, Autspace, in the United States;[33] Autscape in the United Kingdom;[34] and Projekt Empowerment in Sweden.[35]
Martijn Dekker, an autistic computer programmer from the Netherlands, launched an e-mail list called "Independent Living on the Autism Spectrum", or "InLv", in 1996. The list also welcomed those with similar conditions, such as ADHD, dyslexia, and dyscalculia.[32] American writer Harvey Blume was a member of the list[32] and described it as embracing "neurological pluralism" in a 1997 article in The New York Times.[36] Blume discussed the concept of neurological diversity with Australian sociologist Judy Singer.[37] The term "neurodiversity" was first published in Judy Singer's 1998 Honours thesis[38][39] and in Harvey Blume's 1998 article in The Atlantic.[40]
2000s–2010s: The rise of self-advocacy
Aspies For Freedom (AFF) was founded in 2004. They established June 18 as Autistic Pride Day starting in 2005. AFF member Joe Mele initiated a protest against the National Alliance for Autism Research in 2004.[29] AFF also initiated protests against Cure Autism Now and the Judge Rotenberg Center.[citation needed]
In 2004, Canadian autism researcher Michelle Dawson challenged applied behavior analysis (ABA), a common behavioral intervention for people with autism, on ethical grounds. She testified in Auton v. British Columbia against the lack of required government funding for ABA.[41] That same year, The New York Times covered the autistic rights perspective by publishing journalist Amy Harmon's article, "How About Not Curing Us, Some Autistics Are Pleading".[29]
In 2006, The Autism Acceptance Project (TAAP) was founded by Estée Klar, the mother of an autistic child, with help from an autistic advisory and board.[42] The project is affiliated with the Autistic Self Advocacy Network (ASAN) and other activist groups in North America.
From 2005 to 2007, TAAP organized arts-based events.[43] TAAP also sponsored the Joy of Autism: Redefining Ability and Quality of Life events and lectures in Toronto, featuring dozens of autistic artists and speakers such as Jim Sinclair, Michelle Dawson, Phil Schwartz, Morton Ann Gernsbacher, and Larry Bissonnette.
In 2007, an ASAN initiative helped halt the New York Child Study Campaign. The advertising campaign launched in 2007 depicted conditions like autism and ADHD as kidnappers holding children for ransom.[44] The campaign was canceled two weeks after its launch when the center's director had received an estimated 3000 e-mails and phone calls, most of them "expressing anger and hurt".[45] ASAN halted another advertising campaign in 2008 where PETA had implied a link between autism and casein in milk.[46] Phone calls, letters, and petitions organized by ASAN contributed to the removal of the advertisements.[47]
The internet has provided a space for members of the autism movement to organize and communicate independently without relying on non-autistic people, such as family members, healthcare workers, or events hosted by non-autistic individuals, especially considering the geographical distance and communication and speech patterns of autistic individuals.[27]
2020–present
The COVID-19 pandemic caused a drop-off in physical events in the summer of 2020, including autism pride events. Much of autism awareness and campaigning was driven by social media, including the notable growth of TikTok and the emergence of autistic advocates like Chloé Hayden[48] and Paige Layle.[49]
Autism advocacy made progress within the traditional media, making its way into influential business publications such as Harvard Business Review[50][51] and Fast Company.[52] A comprehensive approach to inclusion in the workplace, the Canary Code, was developed in 2022 by Ludmila Praslova, specifically focusing on autistic talent and other marginalized communities.[51][53]
Neurodiversity and autistic self-advocacy movement
Judy Singer coined the term neurodiversity in the late 1990s as a middle ground between the two dominating models of disability, the medical model and the social model, dismissing both of them as insufficiently capturing the solution for—and cause of—disability.[3][54]
Steve Silberman describes neurodiversity as seeing the virtue of different conditions while taking into consideration that the conditions also convey challenges.[55] Autistics for Autistics, a self-advocacy group, describes neurodiversity this way: "Neurodiversity means that—like biodiversity—all of us have a role to play in society ...and we should be valued for who we are. Included in public life, such as school and employment. For nonverbal autistics, this also means equal and fair access to communication, such as AAC."[56]
The autistic self-advocacy movement, made up of autistic individuals, works from a social model of disability perspective. For example, the Autistic Self-Advocacy Network describes its mandate as "to advance the principles of the disability rights movement with regard to autism".[57]
Autistic people are considered to have neurocognitive differences[58] that give them distinct strengths and weaknesses, and they are capable of succeeding when appropriately accommodated and supported.[2][59] According to Ludmila Praslova, author of The Canary Code, creating systems that support the employment of autistic people and their success through organizational transparency, justice, and flexibility benefits all employees.[51]
There is no leader of the neurodiversity movement, and little academic research has been conducted on it as a social phenomenon. As such, proponents of the neurodiversity approach have heterogeneous beliefs[58] but are consistent in the view that autism cannot be separated from an autistic person.[2] The movement opposes therapies that aim to make children "indistinguishable from their peers".[2] Instead, they advocate for accommodations in schools and work environments[60] and including autistic people when making decisions that affect them.[61] Neurodiversity advocates oppose researching a "cure" for autism, and instead support research that helps autistic people thrive as they are.[2]
An analysis of data from the UK and Hungary in 2017 found evidence that autistic or intellectually disabled self-advocates are rarely involved in leadership or decision-making within organisations.[62] It also showed that poverty, unpaid positions at disability organisations, and lack of support are significant barriers for most autistic people, including autistic people with an intellectual disability who wish to self-advocate.[63]
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Perspectives
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Autism diagnosis
The autistic rights movement rejects the classification by psychiatrists of autism as a disorder.[citation needed] Autistic self-advocates[which?] also reject terming the reported increase in autism diagnoses as an "epidemic" since the word implies autism is a disease and point out that the increase is likely due to an expansion of diagnostic criteria rather than an epidemic.[64]
Rejection of functioning labels
The autistic rights movement rejects the use of the labels "high-functioning" and "low-functioning" when describing different autistic people, arguing that the strengths and struggles of autistic people are on a spectrum and not linear.[65]
Opposition to cure and prevention
The autistic rights movement opposes "curing" autism,[29] criticizing the idea as misguided and dangerous. Instead, autism is viewed as a way of life and advocate acceptance over a search for a cure.[66][67] The autistic rights movement is a part of the larger disability rights movement and acknowledges the social model of disability.[68] Within the model, struggles faced by autistic people are viewed as discrimination rather than deficiencies.
Autistic rights activists are opposed to attempts to eliminate autism genes, and argue that doing so would decrease human genetic diversity. In particular, there is opposition to prenatal genetic testing of autism in fetuses, which some believe might be possible in the future.[29] On 23 February 2005, Joseph Buxbaum of the Autism Genome Project at the Icahn School of Medicine at Mount Sinai said there could be a prenatal test for autism within 10 years.[69] However, the genetics of autism have proven to be extremely complex.[70] A wider debate on the ethics involved in the possible elimination of a genotype that has advantages as well as disadvantages, has focused on possible negative effects of tampering with natural selection.[71]
Some people[who?] lament that professionals, such as social workers, may discourage autistic people from having children.[72] Activists are concerned that the "ultimate cure will be a genetic test to prevent autistic children from being born"[29] and that most fetuses with so-called "autism genes" would be aborted if prenatal tests for autism are developed.[67]
The anti-cure perspective is the view of autism as a normal occurrence—an alternate variation in brain wiring or a less common expression of the human genome—rather than a disorder. Advocates of this perspective believe that autism is a unique way of being that should be valued, and efforts to eliminate autism should not be compared to curing cancer but instead to the "efforts of a previous age to cure left-handedness".[29]
Activist Jim Sinclair expresses in his essay "Don't Mourn For Us" that wishing that an autistic person be cured is equivalent to wishing that an entirely different person exists in their place.[73]
Canadian autism researcher Michelle Dawson writes that "No one has yet calculated the costs to autistics, and to society, of the current widespread autism advocacy effort to create a world where there are no autistic people at all."[74]
Temple Grandin comments that if autism were eliminated, society would lose scientists, musicians, and mathematicians; a caveman "with high-functioning Asperger's" might have developed the stone spear.[2][75]
Most autistic self-advocates agree[citation needed] that autistic people should not be made to act exactly like everyone else but that society should accommodate their disability and that autism services should focus on quality of life rather than conformity.[41]
Autistic culture
Some autistic activists suggest that life with autism is like being born among people who speak a different language,[76] follow a religion or philosophy one does not share, and live a lifestyle that feels alien. Social media, meetups, and specific professions are spaces where autistic people connect and may share common interests.[77]
Self advocacy and inclusion in decision-making
A common theme expressed among autistic rights activists and neurodiversity groups[which?] is that they are different from parent- and professional-led organizations and conferences that dominate the autism scene.
In 2003, autism researcher Michelle Dawson criticizes the norm of allowing parents to speak on behalf of their autistic children at conferences to the exclusion of autistics: "With the happy and proud collaboration of governments, courts, researchers, service providers, and funding bodies", she says, "parents have succeeded in removing autistics from the vicinity of any important discussions or decisions." She says that the exclusion results in policy and treatment decisions being made solely by individuals who do not directly experience autism.[78]
In 2005, Autistic rights activist Jim Sinclair states that autism conferences are traditionally geared toward neurotypical parents and professionals, and that to an autistic person they may be quite "hostile" in terms of sensory stimulation and rigidity.[27]
Autism interventions and therapies
In 2011, Aspies For Freedom (AFF) stated that they believe many unethical therapies and treatments for autism have become common. AFF argued that extensive—40 hours per week—applied behavior analysis (ABA) and restricting stimming and other coping mechanisms associated with autism are mentally harmful, that aversion therapy and the use of restraints are physically harmful, and that non-medically approved treatments like chelation therapy and exorcism are dangerous.[79]
United Nations (UN) human rights experts have expressed that autistic people are particularly at risk for harmful medical practices and some approaches amount to "ill-treatment or torture."[80]
Canadian autism self-advocate Michelle Dawson testified in court against government funding of ABA therapy.[81] The Canadian organization Autistics for Autistics (A4A) has outlined some of the main objections to ABA from autistic self-advocates.[examples needed][82]
In 2004, Jane Meyerding, who is autistic, criticized therapy that attempts to remove autism typical behaviors and states that the behaviors are often attempts to communicate.[29] Studies have shown that efforts to pass as non-autistic is associated with poorer mental health and psychological well-being,[83][19] and such findings were consistent across various age groups.[21] There have been accounts and qualitative evidence that some forms of behavioral interventions increase masking or worsen mental health for some autistic people.[23][84][17][22][85] American autistic rights advocate Ari Ne'erman argues that by addressing individual traits of autism, it is possible to reduce harmful behavior and avoid encouraging camouflaging behaviors.[86]
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Criticism of Autism Speaks
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Autism Speaks has faced criticism from autistic rights advocates for failing to represent autistic people and for exploitative practices.[87]
Until he resigned in 2013, John Elder Robison was Autism Speaks' only board member openly recognized as being on the autism spectrum. His resignation came two days after the release of an op-ed by the group's co-founder Suzanne Wright which, according to Robison, "is simply not defensible for someone who feels as I do, and I cannot continue to stand up for the public actions of an organization that makes the same mistakes over and over again by failing to connect to the community it purports to represent".[88]
Simone Greggs, the mother of an autistic child, filed a lawsuit against Autism Speaks for disability discrimination after her job offer was rescinded. The suit alleges that she lost the job offer due to asking for an accommodation on behalf of her autistic son.[89]
Autism Speaks has produced the documentary films Autism Every Day (2006) and Sounding the Alarm (2014) and the short video I Am Autism (2009), each met with strong opposition from autistic rights advocates.[which?] Autism Every Day is a documentary featuring interviews of parents with mostly negative opinions about autism and their situations. It has been criticized[by whom?] due to parents speaking about their children as if they are not there. In one interview, former board member Alison Singer, while in the same room as her autistic daughter, reveals she had contemplated driving herself and her daughter off a bridge.[90] I Am Autism is a short video that personifies autism as a narrative voice,[91] which compares itself to several life-threatening diseases[92] and makes the false claim[93] of causing divorce.[94][95] Sounding the Alarm is a documentary exploring the transition to adulthood and the cost of lifetime care. It was criticized by the Autistic Women & Nonbinary Network for being "full of dehumanizing rhetoric" and portraying ignorance of nonverbal communication.[96]
Autism Speaks fundraising events have been the object of several organized protests by autistic rights advocates.[97][98][99]
In 2013, the organization Boycott Autism Speaks[100] published a list of companies that donate money to Autism Speaks along with their contact information, urging those in the autistic community to pressure those companies into dropping their support via an active boycott,[101] since direct appeals to Autism Speaks did not result in the desired changes. A month later, ASAN published its 2014 Joint Letter to the Sponsors of Autism Speaks, signed by 26 different disability-related organizations, appealing to the moral responsibility of the sponsors, donors, and other supporters.[102]
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Autistic rights groups
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There are several organizations in the autistic rights movement. Some like ASAN are led exclusively by autistic people, while others such as Autism National Committee encourage cooperation between autistic people and their non-autistic allies.
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Events and activities
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Autism activist activities do not always look like other forms of political activism. For example, many autistic people cannot participate in in-person public protests due to sensory overload from the noise.[106] Other cultural assumptions about the correct way to engage in activism, such as "giving people a voice", are not consistent with valuing non-speaking autistic people.[106]
- In 2010, Autistics Speaking Day was a response to the then-upcoming first commemoration of Communication Shutdown. The annual Communication Shutdown event encourages non-autistics to refrain from using social networking websites for one day as a perspective-taking exercise,[107] while Autistics Speaking Day encourages autistic people to become more active on social media and to describe their experiences during a time when there are fewer neurotypical voices in the mix.
- In 2012, autistic activist Zoe Gross organized the first Disability Day of Mourning vigil held in memory of people with disabilities murdered by family members or caregivers.[108][109][110] These vigils are now held annually on 1 March globally, often by local self-advocacy and disability rights groups.[110]
- In 2015, autistic activist Alanna Rose Whitney created the social media campaign #WalkInRed, later rebranded #RedInstead to be more inclusive of wheelchair users, as another alternative to Light It Up Blue.[111][112]
- Autistic rights activists organize protests against organizations they consider objectionable, most notably Autism Speaks and the Judge Rotenberg Center.[113][114][115][116] In the United States, activists affiliated with ASAN have organized numerous protests against Autism Speaks events, typically protesting and leafleting at fundraising walks.[117] Autistic activists including Shain Neumeier and Lydia Brown have organized lobbying days and protests aiming to close or more strictly regulate the Judge Rotenberg Center.[118]
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Terminology
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There is disagreement within the autism community on whether to use person-first terminology (e.g., person with autism) or identity-first terminology (e.g., autistic person). The autistic rights movement encourages the use of identity-first terminology[119] to stress that autism is a part of an individual's identity rather than a condition they have.
Phrases like suffers from autism are objectionable to many people,[120][121] and are discouraged by both the American Psychological Association's style guide and National Center on Disability and Journalism's style guide.[122][123]
The autistic community has developed their own terminology such as:
- Aspie – a person with Asperger's syndrome.[67] Not as frequently used with Aspergers being removed as an official diagnosis.
- Autie – an autistic person.[124]
- Autistics and cousins (AC) – a cover term including aspies, auties, and their "cousins", i.e., people with some autistic traits but no formal diagnosis[125]
- Curebie – a person with the desire to cure autism. This term is considered derogatory.
- Neurodiversity – the framework for understanding some disabilities, such as autism, as a variation in human neurological makeup rather than a disorder.
- Neurotypical (NT) – a person who does not have any neurological differences. It is often used to describe an individual who is not autistic.
- Allistic – a person who is not autistic.[126] Originally it was used satirically to describe those without autism.[127]
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Autistic pride
Autistic pride promotes the idea that autistic people are not defective.[128] It emphasizes the variation and diversity in human neurology.
Autistic pride asserts that autistic people are not impaired or damaged; rather, they have a unique set of characteristics that provide them many rewards and challenges, not unlike their non-autistic peers.[67][129][130]
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Autistic culture and community
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With the recent increases in autism recognition and new approaches to educating and socializing autistics, an autistic culture has begun to develop. Autistic culture is based on a belief that autism is a unique way of being and not a disorder to be cured.[29] The Aspie world, as it is sometimes called, contains people with Asperger syndrome (AS) and high-functioning autism (HFA), and can be linked to three historical trends: the emergence of AS and HFA as labels, the emergence of the disability rights movement, and the rise of the Internet. Autistic communities exist both online and offline; many people use these for support and communication with others like themselves, as the social limitations of autism sometimes make it difficult to make friends, to establish support within general society, and to construct an identity within society.[131]
Because many autistics find it easier to communicate online than in person, a large number of online resources are available.[129] Some autistic individuals learn sign language, participate in online chat rooms, discussion boards, and websites, or use communication devices at autism-community social events. The Internet helps bypass non-verbal cues and emotional sharing that autistics tend to have difficulty with.[36][132] It gives autistic individuals a way to communicate and form online communities.[133]
Conducting work, conversation and interviews online in chat rooms, rather than via phone calls or personal contact, helps level the playing field for many autistics.[72] A New York Times article said "the impact of the Internet on autistics may one day be compared in magnitude to the spread of sign language among the deaf" because it opens new opportunities for communication by filtering out "sensory overload that impedes communication among autistics."[36]
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Notable events
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Autistic Pride Day
Autistic Pride Day is an annual pride celebration that was established by Aspies For Freedom and is observed on 18 June. Organizers of the celebration have compared their efforts to the civil rights and LGBTQ social movements.[67][134][135]
Autistics Speaking Day
Autistics Speaking Day was established by members of the autistic community and is observed annually on 1 November. It provides an opportunity for autistic people to challenge negative stereotypes by speaking for themselves and sharing their stories. The first Autistics Speaking Day was held in 2010.[136] According to Corina Becker, one of the founders, the day is to "acknowledge our difficulties while sharing our strengths, passions, and interests."[137] The idea for the event developed out of opposition to a Communication Shutdown fundraising campaign led by U.S. charity Autism Speaks. Participants had been asked to "simulate having autism" by straying from all forms of online communication for one day. That event received criticism and accused Autism Speaks of missing the point of what autism actually is, referring to autistic individuals' comfort using other means of communication.[138][139]
Autism Acceptance Project
In 2006 the Autism Acceptance Project (TAAProject) was founded by Estée Klar, the mother of an autistic child, with help from an autistic advisory board.[42] The project was dedicated to promoting acceptance and accommodations for autistic people in society and was primarily supported by autistic people. The website for TAAProject disappeared a decade later, but the idea of promoting acceptance has now been adopted with other campaigns such as Autism Acceptance Month.[42]
Autism Acceptance Day
In 2011, the first Autism Acceptance Day celebrations were organized by Paula Durbin Westby as a response to traditional "autism awareness" campaigns many within the autistic community found harmful and insufficient.[140][141] Autism Acceptance Day is now held every April.[140] Awareness focuses on informing others of the existence of autism, while acceptance pushes towards validating and honoring the autism community. By providing tools and educational material, people are encouraged to embrace the challenges autistic people face and celebrate their strengths. Instead of encouraging people to wear blue, Autism Acceptance Day encourages people to wear red.[142]
Autreat
At Autreat—an annual autistic gathering—participants compared their movement to gay rights activists, or the Deaf culture, where sign language is preferred over surgery that might restore hearing.[29] Other local organizations have also arisen: for example, a European counterpart, Autscape, was created around 2005.[143]
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Scholarship
Autism received increasing attention from social-science scholars in the early 2000s, with the goals of improving support services and therapies, arguing that autism should be tolerated as a difference not a disorder, and by how autism affects the definition of personhood and identity.[144] Sociological research has also investigated how social institutions, particularly families, cope with the challenges associated with autism.[145]
A study published on 20 January 2021, by the University of Texas at Dallas suggests that educating non-autistic people about the strengths and challenges of autistic people can help reduce stigma and misconceptions surrounding autism, which may help increase social inclusion of autistic people.[146] The study also found that implicit biases about autism were harder to overcome for non-autistic people.[146]
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Controversies
There are a wide variety of both supportive and critical opinions about the movement among people who are autistic or associated with people with autism. A common criticism leveled against autistic activists is that the majority of them do not have co-occurring intellectual disability and critics argue that their views do not represent the views of autistic people with intellectual disability and their parents.[147][better source needed]
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See also
References
Sources
Further reading
External links
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