Autism rights movement
The autism rights movement, also known as the autistic culture movement or the neurodiversity movement, is a social movement within the context of disability rights that emphasizes a neurodiversity paradigm, viewing the autism spectrum as a result of natural variations in the human brain rather than a disorder to be cured. The autism rights movement advocates for several goals, including greater acceptance of autistic behaviors; therapies that focus on coping skills rather than imitating the behaviors of neurotypical peers; and the recognition of the autistic community as a minority group.
Autism rights or neurodiversity advocates believe that the autism spectrum is genetic and should be accepted as a natural expression of the human genome. This perspective is distinct from two other views: the medical perspective, that autism is caused by a genetic defect and should be addressed by targeting the autism gene(s), and fringe theories that autism is caused by environmental factors such as vaccines.
The movement is controversial. A common criticism against autistic activists is that the majority of them are "high-functioning" or have Asperger syndrome and do not represent the views of "low-functioning" autistic people.
Jim Sinclair is credited as the first person to communicate the anti-cure or autism rights perspective in the late 1980s. In 1992, Sinclair co-founded the Autism Network International, an organization that publishes newsletters "written by and for autistic people." Other individuals involved in the creation of the ANI were Donna Williams and Kathy Grant, two autistic people who knew Sinclair through pen pal lists and autism conferences. The first issue of the ANI newsletter, Our Voice, was distributed online in November 1992, to an audience of mostly neurotypical professionals and parents of young autistic children. The number of autistics in the organization slowly grew over the years, and ANI eventually became a communication network for like-minded autistics.
In 1996, ANI established a yearly retreat known as "Autreat." Autreat was a retreat and conference held in the United States specifically for autistic people 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 had close to 60 participants. It was hosted at Camp Bristol Hills in Canadaigua, New York. The success of Autreat later inspired similar autistic retreats, such as the Association for Autistic Community's conference, Autspace, in the United States; Autscape in the United Kingdom; and Projekt Empowerment in Sweden.
Also in 1996, Martijn Dekker, an autistic computer programmer from the Netherlands, launched an e-mail list called "Independent Living on the Autism Spectrum," or "InLv." The list also welcomed those with "cousin" conditions, such as ADHD, dyslexia, and dyscalculia. American writer Harvey Blume was a member of the list and described it as embracing what he called "neurological pluralism" in a 1997 article in The New York Times. Blume discussed the concept of "neurological diversity" with Australian sociologist Judy Singer. The term "neurodiversity" was first published in Singer's 1998 Honours thesis and in Blume's 1998 article in The Atlantic.
2000s-2010s: The rise of self-advocacy and autistic prideEdit
Aspies For Freedom (AFF) was founded in 2004, and established June 18 as Autistic Pride Day starting in 2005. AFF was also instrumental in initiating protests against the National Alliance for Autism Research, Cure Autism Now, and the Judge Rotenberg Center.
In 2004, Michelle Dawson challenged applied behavior analysis (ABA) on ethical grounds. She testified in Auton v. British Columbia against the required government funding of ABA. That same year The New York Times covered the autism rights perspective by publishing Amy Harmon's article, "How about not curing us? Some autistics are pleading."
In 2006, the Autism Acceptance Project was founded by Estée Klar, the mother of an autistic child, with help from an autistic advisory and board. The project affiliated with The Autistic Self Advocacy Network and other activist groups in North America and was one of the first to sign the petition against the New York Child Study Campaign. It is also recognized by ASAN in a letter to the United Nations of being one of the first autism organizations to promote autism acceptance. From 2005-8, TAAProject organized arts-based events to show the public an active autism rights movement that burgeoned online. In addition, it sponsored the controversial Joy of Autism: Redefining Ability and Quality of Life events and lectures in Toronto, featuring dozens of autistic artists and speakers including Jim Sinclair, Michelle Dawson, Phil Schwartz, Morton Ann Gernsbacher, Larry Bissonnette and more.
In 2008, the Autistic Self Advocacy Network (ASAN) succeeded in halting two ad campaigns it stated were demeaning to autistics. The first ads were a series published by the NYU Child Study Center that appeared in the form of ransom notes. One read, "We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives. This is only the beginning", and was signed, "Autism". The second ads were published by PETA and featured a bowl of milk with the left over bits of cereal forming a frowning face. The text read, "Got autism?" and was meant to advertise what PETA claims is a link between autism and the casein in milk. Phone calls, letters and petitions organized by ASAN led to the removal of these ads.
The rise of the Internet has provided more opportunities for autistic individuals to connect and organize. Considering the geographical distance, communication and speech patterns of autistic individuals, and the domination of neurotypical professionals and family members in established autism organizations, the Internet has provided an invaluable space for members of the movement to organize and communicate.
There are two major conceptualizations of autism within autism advocacy. Those who favour the pathology paradigm, which aligns with the medical model of disability, see autism as a disorder to be treated or cured. Those who favor the pathology paradigm argue that atypical behaviors of autistic individuals are detrimental and should therefore be reduced or eliminated through therapy. Their advocacy efforts focus primarily on medical research to identify genetic and environmental risk factors in autism. Those who favour the neurodiversity paradigm, which aligns with the social model of disability, see autism as a naturally-occurring variation in the brain. Neurodiversity advocates argue that efforts to eliminate autism should not be compared, for example, to curing cancer, but instead to the antiquated notion of curing left-handedness. Their advocacy efforts focus primarily on acceptance, accommodation, and support for autistic people as "neuro-minorities" in society.
The pathology paradigm is the traditional view of autism through a biomedical lens, in which it is seen as a disorder characterized by various impairments, mainly in communication and social interaction. Those taking this perspective believe that autism is generally a kind of harmful dysfunction. Ways of functioning which diverge from a typical brain are "incorrect" or "unhealthy" and must therefore be treated or cured. The atypical behaviors of autistic individuals are considered a detriment to social and professional success and should therefore be reduced or eliminated through behavior modification therapy.
Advocates with this view include both autistic adults and parents of autistic children, but contain a higher percentage of parents when compared to those adopting the neurodiversity paradigm. These advocates believe that medical research is necessary to address the "autism epidemic," reduce suffering, and provide the best outcomes for autistic individuals. In addition to etiological research, other areas of focus may include biology, diagnosis, and treatment, including medication, behavioural and psychological interventions, and the treatment of co-existing medical conditions.
Advocacy groups that focus primarily on medical research include Autism Speaks, the Autism Science Foundation, and its predecessor organizations, the Autism Coalition for Research and Education, the National Alliance for Autism Research, and Cure Autism Now, and the former Autism Research Institute.
The neurodiversity paradigm is a view of autism as a different way of being rather than as a disease or disorder that must be cured. Autistic people are considered to have neurocognitive differences which give them distinct strengths and weaknesses, and are capable of succeeding when appropriately accommodated and supported. Neurodiversity advocates argue that efforts to eliminate autism should not be compared, for example, to curing cancer, but instead to the antiquated notion of curing left-handedness.
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 paradigm have heterogenous beliefs, but are consistent in the view that autism cannot be separated from an autistic person. Advocacy efforts may include opposition to therapies that aim to make children "indistinguishable from their peers," accommodations in schools and work environments, and lobbying for the inclusion of autistic people when making decisions that affect them.
Neurodiversity advocates are opposed to research for a cure, believing that it will lead to eugenics, and instead support research that helps autistic people thrive as they are. For example, NeuroTribes author Steve Silberman noted a lack of research in regards to seizure-controlling drugs and autistic brains; that sensory differences in autistic people were unheard of until Temple Grandin spoke about her experiences; and that only a small percentage of research funding goes towards the needs of autistic adults.
Advocacy groups that focus primarily on acceptance and accommodation include Autism Network International, Autism National Committee, Autistic Self Advocacy Network, and Autistic Women & Nonbinary Network.
Autism rights perspectivesEdit
Autism is not a disorderEdit
Autism is classified by psychologists as a disorder. Caring for autistic individuals has been compared to treating a patient with cancer, though extended over the duration of a normal lifespan. Autistic children have also been described as being held hostage to a psychiatric disorder. Boyd Haley, an anti-vaccine activist and early promoter of the debunked claim that thimerosol causes autism, labeled the disease as "mad child disease" (akin to mad cow disease), which some autistic individuals and their parents have found highly offensive. Margaret Somerville, founding director of the McGill Centre for Medicine, Ethics and Law, said that with activism there is a direct goal and it is sometimes necessary to sacrifice complexity and nuance to make a point, but some autistic activists don't believe desperation justifies the rhetoric. Bennett L. Leventhal said he understands concern about comparing autistic children to hostages but thinks the campaigns make the point that these are real diseases that will consume children if untreated. Autistic rights activists also reject terming the reported increase in autism diagnoses as an 'epidemic' since the word implies autism is a disease.
Attempts have been made to place a figure on the financial cost of autism, addressed to both scholarly and popular audiences. These efforts have been criticized by some autism rights advocates, who compare them to similar calculations about "persons with bad heredity" made by the eugenics movement in the early 20th century—a movement currently in disrepute. Michelle Dawson has pointed out that no effort has been made to examine the cost of 'eliminating the disease' to autistic individuals, and she, as well as others, have also pointed out the valuable contributions autistic individuals can, and have made to society. Dr. Temple Grandin has speculated that an autistic caveman probably invented the first stone spear, and that if autism were eliminated, society would lose most of its scientists, musicians, and mathematicians.
Some autistic activists say it is not easy to distinguish between high and low functioning. Others are supportive of the distinction between the low and high functioning labels as well as autism and Asperger syndrome, and believe it is important in helping individuals get proper consultation and treatment.
Autism does not need to be curedEdit
"Curing" autism is a controversial and politicized issue. Doctors and scientists are not sure of the causes of autism yet many organizations like Autism Research Institute and Autism Speaks advocate researching a cure. Members of the various autism rights organizations view autism as a way of life rather than as a disease and thus advocate acceptance over a search for a cure. Some advocates believe that common therapies for the behavioral and language differences associated with autism, like applied behavior analysis, are not only misguided but also unethical.
The "anti-cure perspective" endorsed by the movement is a view that autism is not a disorder, but a normal occurrence—an alternate variation in brain wiring or a less common expression of the human genome. Advocates of this perspective believe that autism is a unique way of being that should be validated, supported and appreciated rather than shunned, discriminated against or eliminated. They believe the quirks and uniqueness of autistic individuals should be tolerated as the differences of any minority group should be tolerated and that efforts to eliminate autism should not be compared, for example, to curing cancer but instead to the antiquated notion of curing left-handedness. The ARM is a part of the larger disability rights movement, and as such acknowledges the social model of disability. Within the model, struggles faced by autistic people are viewed as discrimination rather than deficiencies.
Jim Sinclair, a leader in the movement, argues that autism is essential to a person, not a disease secondary to the person. Sinclair says that wishing that an autistic person be cured is equivalent to wishing that they disappear and another completely different person exist in their place. Visions for a future where autism has been eradicated, Sinclair believes, is the desire to end the autistic culture.
Some movement members with Asperger syndrome, who do not have the language differences typical of autistic individuals, believe their way of life should be respected and they should be left alone completely. Other members agree that autistics should not be made to act exactly like everyone else, but that they should receive therapy to help them learn to communicate in innovative ways or regulate emotions. Simon Baron-Cohen, a professor of developmental psychology at Trinity College, Cambridge and an autism researcher, expressed the latter view. Baron-Cohen said:
|“||I do think there is a benefit in trying to help people with autism-spectrum conditions with areas of difficulty such as emotion recognition. Nobody would dispute the place for interventions that alleviate areas of difficulty, while leaving the areas of strength untouched. But to talk about a 'cure for autism' is a sledge-hammer approach and the fear would be that in the process of alleviating the areas of difficulty, the qualities that are special - such as the remarkable attention to detail, and the ability to concentrate for long periods on a small topic in depth - would be lost. Autism is both a disability and a difference. We need to find ways of alleviating the disability while respecting and valuing the difference.||”|
Autistic people have their own cultureEdit
Some autistic activists suggest that life with autism is very much like being born among people who speak a different language, have a religion or philosophy one does not share and live a lifestyle that feels alien. To put it differently, Autistics have an individual culture that's often very different from their environment.
Autistic people require inclusion in the autism debateEdit
A common theme expressed among autism rights activists and neurodiversity groups is that they are different from parent- and professional- led organizations and conferences that dominate the autism scene. 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." This exclusion results in policy and treatment decisions being made solely by individuals who do not directly experience autism.
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.
In defiance of the common complaint that anti-cure advocates' ability to articulate complex opinions in writing—which some critics see as being impossible for autistic people—autistic adults such as Amanda Baggs use their own writing and videos to demonstrate that it is possible for severely disabled autistics to be autism rights advocates. She says that when the critics assume that intelligent and articulate autistic people do not have difficulties like self-injurious behavior and difficulty with self-care, they affect the opinions of policy makers and make it more difficult for intelligent and articulate autistic people to get services. Baggs cites an example of an autistic person who was denied services when it was discovered that she could type.
Autism therapy is often unethicalEdit
Aspies For Freedom stated that the most common therapies for autism are unethical, since they focus on extinguishing harmless stimming, forcing eye contact and breaking routines. AFF argued that ABA therapy and restriction of stimming "and other autistic coping mechanisms" are mentally harmful, that aversion therapy and the use of restraints are physically harmful, and that alternative treatments like chelation are dangerous. Michelle Dawson, a Canadian autism self-advocate, testified in court against government funding of ABA therapy. An autistic person named Jane Meyerding criticized therapy which attempts to remove autistic behaviors because she says that the behaviors that the therapy tries to remove are attempts to communicate.
Autism genes should not be eliminatedEdit
Since those in the autism rights movement see autism as a natural human variation and not a disorder, they are opposed to attempts to eliminate autism. In particular, there is opposition to prenatal genetic testing of autism in unborn fetuses, which some believe might be possible in the future (see Heritability of autism). Some worry that this can prevent autistic people from being born. On February 23, 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. However, the genetics of autism have proven to be extremely complex. In any case, the Autistic Genocide Clock was started in response to this, which counts down to 10 years after Buxbaum made this announcement. The public has started to debate the ethics involved in the possible elimination of a genotype that has liabilities and advantages, which may be seen as tampering with natural selection.
Some people lament that professionals, such as social workers, may discourage autistics from having children. Activists are concerned that the "ultimate cure will be a genetic test to prevent autistic children from being born" and that most autistic fetuses would be aborted if prenatal tests for autism are developed.
Critics of the movement argue that anyone on the autism spectrum who is able to express their desire not to be cured must be high functioning autistic or have Asperger syndrome, Lenny Schafer argues that if every use of autism were changed to read Asperger syndrome, then the movement might make sense, although the incorporation of Asperger syndrome into the autism diagnosis in the DSM-5 has been used as a counterargument by the autism rights movement.
Autism Speaks boycottEdit
As the most recognized name in autism advocacy worldwide, Autism Speaks is seen as representative of autism, particularly advocacy of a cure. As a result, Autism Speaks is implicated in perpetuating misconceptions, including inaccurate diagnostic criteria, functioning labels, "person"-first language, the medical model of disability, equation of communication and intelligence, promotion of ABA therapy, comparisons between autism and diseases, the view of rising autism diagnosis rates as an epidemic, the concept of autism as something separable from people with autism, the view of autistic children as trapped or broken, the belief that married couples who have autistic children are more likely to divorce, and the belief that parent-on-child murder is caused by lack of services.
In addition to its cultural impact, Autism Speaks has been criticized for ignoring and excluding autistics. Until he resigned in 2013, John Elder Robison was the organization's only board member openly recognised 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." 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 son.
Autism Speaks has produced three major films, each met with strong opposition from the Autistic community. Autism Every Day is a documentary featuring interviews of parents with mostly negative opinions about autism and their situations. It has been criticized due to parents speaking about their children as if they are not there. In one interview, former board member Alison Singer, who has an autistic daughter reveals she contemplated murder-suicide with her daughter in the same room. I Am Autism is a short video that personifies autism as a narrative voice, which compares itself to several diseases and makes the false claim of causing divorce. Sounding the Alarm is a documentary exploring the transition to adulthood and the cost of lifetime care. It was criticized for being "full of dehumanizing rhetoric" and portraying ignorance of nonverbal communication.
Because of the number of objections to the organization, Autism Speaks fundraising events have been the object of organized protest. Many of these protests are organized by the Autistic Self Advocacy Network. In 2013, the organization Boycott Autism Speaks 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, 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.
Autism rights groupsEdit
There are several organizations in the autism rights movement. Some like the Autistic Self Advocacy Network are led exclusively by Autistic people, while others such as Autism National Committee encourage cooperation between Autistic people and their non-autistic allies.
|Year founded||Title||Description||Nonprofit status|
|1962||National Autistic Society (NAS)||Charity supporting advocacy and education. NAS manages a number of schools and self-advocacy groups throughout the United Kingdom.||Registered charity|
|1983||Autism-Europe (AE)||An international network association located in Brussels, Belgium, whose main objective is to advance the rights of autistic people and their families and to help them improve their quality of life. Autism-Europe does this primarily by representing autistic people and their families in advocacy work with the European Union institutions.||International non-profit organisation (aisbl)|
|1986||Vlaamse Vereniging Autisme (VVA)||Flanders based social network consisting of both Autistic individuals and family members. Autistic individuals and couples where one partner has Autism are frequent speakers or hosts at events intended to improve the understanding and collaboration between Autistic individuals and non-Autistic individuals and eliminate misconceptions about Autism.||vzw (equivalent to 501(c))|
|1990||Autism National Committee (AutCom)||Advocacy organization with a specific focus on civil rights, dedicated to "Social Justice for All Citizens with Autism."||501(c)3|
|1992||Autism Network International (ANI)||Self-advocacy organization founded by Autistic individuals. ANI is the host of the annual Autreat conference.||None|
|2004||Aspies For Freedom (AFF)||Web-based organization for the Autistic community that had more than 20,000 members. Aspies For Freedom has disbanded, but some of its former members have reorganized at the online communities of Autism Friends Network and ASDCommunity.|
|2005||The Autism Acceptance Project (TAAProject)||Organization founded by mother to autistic son Estee Klar with a group of autistic advisory and board members. An arts-based organization with an online presence that conducts online and offline events to support autism acceptance and critical thinking about autism and disability. Based in Canada.||Canadian Registered Charity|
|2006||Autistic Self Advocacy Network (ASAN)||Self-advocacy organization founded by Ari Ne'eman to represent the Autistic community and further the autism rights movement.||501(c)3|
|2009||Don't Play Me, Pay Me||UK campaign focusing on Asperger syndrome, encouraging and supporting disabled actors.||None|
|2009||Autistic Women & Nonbinary Network (AWN)||Self-advocacy organization founded by several Autistic women, focused on the intersection of the autism rights movement with feminism.||501(c)3|
|2010||Thinking Person's Guide To Autism (TPGA)||Collaborative online information resource and publisher of the book by the same name.||501(c)3|
|2013||The I Can Network||The I Can Network is a movement dedicated to driving a rethink of the Autism Spectrum among young people and the community, away from ‘I Can’t’ to ‘I Can’.|
|2015||White Unicorn e.V.||Self-advocacy association for the development of an autistic-friendly environment e.V., Germany||Registered charity|
|2016||Alternative Baseball Organization (ABO)||Adaptive baseball/softball organization formed by Taylor Duncan in 2016 to raise awareness and acceptance for autistic teens and adults through sport.|
Events and activitiesEdit
- The Autism Network International annually hosted Autreat, a retreat-style conference developed to allow autistic individuals to meet, socialize and learn advocacy skills in an "autism friendly" environment for many years before the final Autreat took place in 2013. It was founded in 1996.
- In 2005, Aspies For Freedom founded Autistic Pride Day, which is now celebrated internationally, every year on June 18. Many events celebrating Autistic pride are held throughout the year
- In 2005, The Autism Acceptance Project began its first arts-based events and lectures to support autistic individuals in response to the negative portrayals of autism by the non-autistic community in Canada.
- In 2010, an initiative by Corina Lynn Becker created Autistics Speaking Day as 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, 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 2011, the first Autism Acceptance Day celebrations were organized by Paula Durbin-Westby as a response to traditional "Autism Awareness" campaigns which the Autistic community found harmful and insufficient. Autism Acceptance Day is now held every April.
- 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. These vigils are now held annually on March 1 globally, often by local self-advocacy and disability rights groups.
- In 2013, autistic activists Kassiane Asasumasu and Shalia Martin created the Tone It Down Taupe campaign as a parody of Light It Up Blue, asking people to "tone down the fear rhetoric [and] alarmism." The campaign has successfully raised funds for multiple iPad giveaways to help autistic adults communicate.
- In 2015, autistic activist Alanna Rose Whitney created the social media campaign #WalkInRed, later rebranded #RedInstead to be more inclusive of people with physical disabilities, as another alternative to Light It Up Blue.
- In 2016, the first Autistics Present Symposium on Culture and Identity was organized by Sara Sanders Gardner of the Bellevue College Autism Spectrum Navigators Program, featuring all autistic presenters. Since 2016, Autistics Present has been held annually with co-sponsorship with the Autistic Women and Nonbinary Network.
- Advocates have implemented several experimental programs for alternative education for individuals on the spectrum. For instance, the School of ASPIE (Autistic Strength, Purpose and Independence in Education) in Boiceville, New York aims to help autistics cope with a non-autistic world, but stresses that it is acceptable and expected that they "act autistic".
- Autism rights activists organize protests against organizations they consider objectionable, most notably Autism Speaks and the Judge Rotenberg Center. In the United States, activists affiliated with the Autistic Self Advocacy Network have organized numerous protests against Autism Speaks events, typically protesting and leafleting at fundraising walks. 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.
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|Wikiquote has quotations related to: Autism|
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