Autism rights movement

Jim Sinclair is credited as the first person to communicate the anti-cure or autism rights perspective in the late 1980s.[2] 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.[5]

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[6] 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.[7] The success of Autreat later inspired similar autistic retreats, such as the Association for Autistic Community's conference, Autspace, in the United States;[8] Autscape in the United Kingdom;[9] and Projekt Empowerment in Sweden.[10]

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.[7] American writer Harvey Blume was a member of the list[7] and described it as embracing what he called "neurological pluralism" in a 1997 article in The New York Times.[11] Blume discussed the concept of "neurological diversity" with Australian sociologist Judy Singer.[12] The term "neurodiversity" was first published in Singer's 1998 Honours thesis[13][14] and in Blume's 1998 article in The Atlantic.[15]

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.[16]

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.[17] 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."[16]

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.[18] 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".[2] 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.[19][20]

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.[5]

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.[22][23] Those taking this perspective believe that autism is generally a kind of harmful dysfunction.[21] Ways of functioning which diverge from a typical brain are "incorrect" or "unhealthy" and must therefore be treated or cured.[24] 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.[25][26]

Proponents of 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.[2] These advocates believe that medical research is necessary to address the "autism epidemic,"[2] 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.[27]

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 the understanding that humanity has a variety of neurotypes, and always has[28]. The autistic self-advocacy group, A4A, describes it 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."[29][30]

The neurodiversity movement views autism as a disability and a different way of being rather than as a disease or disorder that must be cured.[2][31] It follows the social model of disability[32] which focuses on removing access barriers in society so that disabled people can be included, rather than on "fixing" disabled people (the medical model of disability[33]). In this way, it is aligned with the principles of the broader disability rights movement[34].

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".[35] The social model of disability is specifically important to many autistic people who have been raised to think they are "broken versions of normal[36]" rather than being accepted and having accommodations made for their disabilities. A shift from the medical model to the social model of disability has real-world advantages: for instance, some software companies now adjusting their job interview processes to be more accessible to autistic applicants rather than applying pressure on the applicants to "act neurotypical. This has strengthening the industry's pool of applicants while also reducing unemployment for autistic people[37].

Autistic people are considered to have neurocognitive differences[21] which give them distinct strengths and weaknesses, and are capable of succeeding when appropriately accommodated and supported.[2][31] 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.[38] This is not to belittle the challenges that autistic people face, but rather to point out that many of these challenges are due to structural inequities that can be remedied through equal access and acceptance of autistic differences.

There is no leader of the neurodiversity movement and little academic research has been conducted on it as a social phenomenon.[21] As such, proponents of the neurodiversity paradigm have heterogenous beliefs,[21] but are consistent in the view that autism cannot be separated from an autistic person.[2] Advocacy efforts may include opposition to therapies that aim to make children "indistinguishable from their peers,"[2] accommodations in schools and work environments,[39] and lobbying for the inclusion of autistic people when making decisions that affect them.[40]

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.[2] For example, NeuroTribes author Steve Silberman has noted that neurodiversity advocates would like to see more research in regards to seizure-controlling drugs rather than the mainstream research goals of identifying and eliminating "autism genes"[41] and that only a small percentage of research funding goes towards the quality of life needs of autistic adults.[31][39][42]

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.

The Autistic Self-Advocacy Network (ASAN) uses a seven-colored heptagonal symbol to represent both the autistic spectrum and the idea of diversity.[1]

Autism is classified by psychologists as a disorder.[43][44][45] However, some fundraising organizations have referred to caring for autistic individuals has been compared to treating a patient with cancer, though extended over the duration of a normal lifespan.[46] Autistic children have also been described as being held hostage to a psychiatric disorder.[47] 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.[48][49] 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.[17] Bennett L. Leventhal said he understands concern about comparing autistic children to hostages and notes it is a misnomer to call autism a "disease" that will consume children if untreated.[47] Autistic self-advocates 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 due to an expansion of diagnostic criteria itself, rather than an epidemic.[50]

Attempts have been made to place a figure on the financial cost of autism, addressed to both scholarly[51] and popular audiences.[52] 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.[53] Michelle Dawson has pointed out that no effort has been made to examine the cost of 'eliminating the disease' to autistic individuals,[54] and she, as well as others, have also pointed out the valuable contributions autistic individuals can, and have made to society.[54][55] 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.[56][2]

Some autistic activists say it is not easy to distinguish between high and low functioning.[16] A few autistic individuals remain supportive of the distinction between the low and high functioning labels as well as the medically-discredited distinction between autism and Asperger syndrome, and believe that functioning labels are important in helping individuals get proper consultation and treatment.[57]

Opinions are divided on the use of a jigsaw-puzzle piece to represent autism, with some parents liking it, and some autistic adults disliking it.[1]

"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 have advocated researching a cure. Members of the various autistic rights organizations view autism as a way of life rather than as a disease and thus advocate acceptance over a search for a cure.[16][58] 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.[59]

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.[16] 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.[16][60] Sometimes called a "strengths-based" diagnosis, it means that each individual's challenges and strengths should be equally recognized and the quirks and uniqueness of autistic individuals should be viewed inclusively, as the differences of any minority group 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.[16][61] The ARM is a part of the larger disability rights movement, and as such acknowledges the social model of disability.[62] 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.[63] Visions for a future where autism has been eradicated, Sinclair believes, is the desire to end the autistic culture.[63]

Most autistic self-advocates agree 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.[17][64] Simon Baron-Cohen, a professor of developmental psychology at Trinity College, Cambridge and an autism researcher, expressed the latter view.[65] Baron-Cohen said:[58]

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. Social media, meetups and even specific professions are all spaces where autistic people connect and may share common language or a common culture.

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.[46]

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.[5]

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[61]—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.[66] 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.[67]

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.[68] Michelle Dawson, a Canadian autism self-advocate, testified in court against government funding of ABA therapy.[61] 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.[16] Autistics for Autistics (A4A), a Canadian group, has outlined some of the main objections to ABA from autistic self-advocates[69].

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.[16] 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.[70] However, the genetics of autism have proven to be extremely complex.[71] In any case, the Autistic Genocide Clock was started in response to this, which counts down to 10 years after Buxbaum made this announcement.[72] 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.[73]

Some people lament that professionals, such as social workers, may discourage autistics from having children.[74] Activists are concerned that the "ultimate cure will be a genetic test to prevent autistic children from being born"[16] and that most fetuses with so-called "autism genes" would be aborted if prenatal tests for autism are developed.[58]

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,[16] 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.[75]The myth that all advocates are high-functioning has been debunked [76][77]

Jonathan Mitchell, an autistic author and blogger who advocates for a cure for autism, has described neurodiversity as a "tempting escape valve" for autistics with low self-esteem.[78]