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.[2] 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[3] or imitations of social behaviors of allistic (non-autistic) peers (which have been associated with poorer mental health);[4][5][6][7][8] the creation of social networks and events that allow autistic people to socialize on their own terms;[9] and the recognition of the autistic community as a minority group.[8][10]
Autism rights advocates believe that the autism spectrum should be accepted as a natural expression of the human genome, and accommodated like any other condition (the social model of disability). This perspective is distinct from two other views: that autism is a genetic defect and should be addressed by targeting the gene (or genes) responsible for it, or that it is caused by environmental factors (including the disproven claim that it is caused by vaccines).[2][10]
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 argued that their views do not represent the views of autistic people with intellectual disability and their parents.[11]
History[edit]
1980s–1990s: Autistic-run organizations, newsletters, and conferences[edit]
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 ANI newsletter, Our Voice, had its first issue 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.[12] Sinclair wrote the essay, "Don't Mourn for Us", published in 1993 in the ANI newsletter (Volume 1, Number 3), with an anti-cure perspective on autism.[13] The essay has been thought of by some to be a touchstone for the fledgling autism-rights movement, and has been mentioned in The New York Times[14] and New York Magazine.[15]
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[16] 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.[17] The success of Autreat later inspired similar autistic retreats, such as the Association for Autistic Community's conference, Autspace, in the United States;[18] Autscape in the United Kingdom;[19] and Projekt Empowerment in Sweden.[20]
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.[17] American writer Harvey Blume was a member of the list[17] and described it as embracing what he called "neurological pluralism" in a 1997 article in The New York Times.[21] Blume discussed the concept of neurological diversity with Australian sociologist Judy Singer.[22] The term "neurodiversity" was first published in Singer's 1998 Honours thesis[23][24] and in Blume's 1998 article in The Atlantic.[25]
2000s–2010s: The rise of self-advocacy and autistic pride[edit]
Aspies For Freedom (AFF) was founded in 2004, and established 18 June 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.[14]
In 2004, Michelle Dawson challenged applied behavior analysis (ABA) on ethical grounds. She testified in Auton v. British Columbia against the lack of required government funding of ABA.[26] 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."[14]
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.[27] The project affiliated with the Autistic Self Advocacy Network (ASAN) 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 to 2008, 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 as early as 2001 and as late as 2016, many families and related organizations pursued legal action against states to mandate insurance coverage of autism treatments and therapies. Organizations that directly contributed to this legal outcome includes Washington Autism Alliance, Autism Society, Indiana Autism Alliance, Autism Society of Florida, and other similarly structured organizations in each state.
In 2008, 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 leftover 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.[28][29]
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.[12]
2020 onwards[edit]
The start of the decade was quickly dominated by the COVID-19 pandemic, causing a drop-off in the number of 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 Chloe Hayden[30] and Paige Layle.[31]
At the same time, autism advocacy made progress within the traditional media with the autistic perspective making its way into influential business publications such as Harvard Business Review[32][33] and Fast Company.[34] A comprehensive approach to inclusion in the workplace, the Canary Code, was developed with a specific focus on autistic talent as well as other marginalized communities.[33][35]
Advocacy controversy[edit]
The neurodiversity paradigm falls in contrast with the medical model of autism, which considers autism a pathology. Those who favour the pathology paradigm, which aligns with the medical model of disability, see autism as a disorder to be treated or cured. Proponents of the pathology paradigm argue that atypical behaviors of autistic individuals are detrimental and should therefore be reduced or eliminated through behavior modification. Their 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. Proponents of neurodiversity often argue that it is harmful to autistic people to pathologize their behavior.[36]
Pathology paradigm[edit]
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.[37][38] Those taking this perspective believe that autism is generally a kind of harmful dysfunction.[36] Ways of functioning which diverge from a typical brain are "incorrect" or "unhealthy" and must therefore be treated or cured.[39] 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 such as applied behavioural therapy. Proponents of this view include very few autistic adults as this is more often the view of parents when compared to autistic adults 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.[40]
Advocacy groups in the US that focus primarily on medical research include Autism Speaks, who some in the Autistic community consider to be a hate group,[41][42][43][44] 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.[45][41]
Neurodiversity paradigm and autistic self-advocacy movement[edit]
Main article: Neurodiversity
The neurodiversity paradigm is the understanding that humanity has a variety of neurotypes, and always has.[46] The autistic self-advocacy group Autistics for Autistics 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."[47] The neurodiversity movement views autism as a different way of being rather than as a disease or disorder that must be cured,[2][48] and embraces the social model of disability which focuses on removing access barriers in society so that disabled people can be included, rather than on "fixing" disabled people. In this way, it is aligned with the principles of the broader disability rights movement.[original research?][49]
The autistic self-advocacy movement, made up of autistic individuals, works from a social model of disability perspective. For example, ASAN describes its mandate as to "advance the principles of the disability rights movement with regard to autism".[50] The social model of disability is especially important to many autistic people who have been raised to think they are "broken versions of normal"[51] 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 strengthened the industry's pool of applicants while also reducing unemployment for autistic people.[52]
Autistic people are considered to have neurocognitive differences[36] which give them distinct strengths and weaknesses, and are capable of succeeding when appropriately accommodated and supported.[2][48] 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. In the workplace, creating systems that support autistic employment and success through mechanisms such as organizational transparency, justice, and flexibility, benefits all employees[33]
There is no leader of the neurodiversity movement and little academic research has been conducted on it as a social phenomenon.[36] As such, proponents of the neurodiversity paradigm have heterogenous beliefs,[36] 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] advocacy of accommodations in schools and work environments,[53] and lobbying for the inclusion of autistic people when making decisions that affect them.[54]
Neurodiversity advocates are opposed to research for a cure, as this aim is a form of eugenics, and instead support research that helps autistic people thrive as they are.[2] Only a small percentage of research funding goes towards the quality of life needs of autistic adults.[48][53][46]
Recent research found evidence that autistic self-advocates are disadvantaged in many disability / autism rights organisations, they are rarely involved in leadership or decision-making within organisations.[55] Studies also show that poverty, unpaid positions at disability organisations and lack of support are major barriers for most autistic people, including autistic people with an intellectual disability who wish to do self-advocacy.[56]
Advocacy groups that focus primarily on acceptance and accommodation include Autism Network International, Autism National Committee, ASAN, and Autistic Women & Nonbinary Network.
Perspectives[edit]
Autism rights perspectives[edit]
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.[57][58][59] However, some fundraising organizations have referred to caring for autistic individuals as being comparable to treating a patient with cancer, though extended over the duration of a normal lifespan.[60] Autistic children have also been described as being held hostage to a psychiatric disorder.[61] Boyd Haley, an anti-vaccine activist and early promoter of the debunked claim that thiomersal causes autism, labeled autism as "mad child disease" (akin to mad cow disease), which some autistic individuals and their parents have found highly offensive.[62][63] 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 do not believe desperation justifies the rhetoric.[26] 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.[61] 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.[64]
Attempts have been made to place a figure on the financial cost of autism, addressed to both scholarly[65] and popular audiences.[66] 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.[67] Michelle Dawson has pointed out that no effort has been made to examine the cost of 'eliminating the disease' to autistic individuals,[68] and she, as well as others, have also pointed out the valuable contributions autistic individuals can, and have made to society.[68][69] 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.[2][70]
Autism as a spectrum[edit]
Some argue that while some autistic people can function "normally", that any impairments not due to prejudice are insignificant or nonexistent and deserve to have their condition viewed as a difference (akin to being left-handed), other autistic people are severely impaired and should be counted as having disabilities (akin to having a broken leg).
However, many autistic activists refute this perspective, saying that it is not easy to distinguish between "high" and "low" functioning and that these labels do more harm than good.[14][71] The majority of autistic individuals oppose the distinction between the low and high functioning labels as well as the medically abandoned distinction between autism and Asperger syndrome, and believe that functioning labels are not important in helping individuals get proper consultation and treatment.[72]
Autism does not need to be cured[edit]
Opinions are divided on the use of a jigsaw-puzzle piece to represent autism, with some parents liking it, and the majority of autistic adults disliking it.[1][73] Research has found it has negative connotations.[74]
"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.[14][75] Michelle Dawson wrote that common therapies for the behavioral and language differences associated with autism, like applied behavior analysis, are not only misguided but also unethical.[76]
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.[14] 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.[14][77] 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 with 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.[14][78] The ARM is a part of the larger disability rights movement, and as such acknowledges the social model of disability.[79] 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.[80] Visions for a future where autism has been eradicated, Sinclair believes, is the desire to end the autistic culture.[80]
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.[26][81] Simon Baron-Cohen, a professor of developmental psychology at Trinity College, Cambridge, and an autism researcher, expressed the latter view.[82] Baron-Cohen said:[75]
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 culture[edit]
Further information: Autistic culture and Autistic art
Autistic art representing the natural diversity of human minds.
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, autistic people 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.[83]
This perspective is often voiced in opposition to the pathologisation of autistic modes of thought and social "rulebooks", as there are many people without autism who either claim that autistic people all think the same (on account of their similarities with each other and distinctions from members of the general public) or are completely different from each other and share no more than a label (on account of their individual life experiences, differences, and differences across the spectrum) or the suggestion that the existence of similar talents within autistic people are merely compensatory factors for a group of people who (according to non-autistic people) express severe disability or lack originality.
Autistic people require inclusion in the autism debate[edit]
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.[60]
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.[12]
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[78]—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.[84] 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.[85]
Autism therapy is often unethical[edit]
Further information: Autism therapies
Aspies For Freedom (AFF) 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 therapy are dangerous.[86] The United Nations (UN) has also called out many autism treatments as "ill-treatment or torture".[87]
Michelle Dawson, a Canadian autism self-advocate, testified in court against government funding of ABA therapy.[78] 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.[14] Autistics for Autistics (A4A), a Canadian group, has outlined some of the main objections to ABA from autistic self-advocates.[88]
Autism genes should not be eliminated[edit]
Autism 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.[14] 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.[89] However, the genetics of autism have proven to be extremely complex.[90] 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.[91]
Some people lament that professionals, such as social workers, may discourage autistic people from having children.[92] Activists are concerned that the "ultimate cure will be a genetic test to prevent autistic children from being born"[14] and that most fetuses with so-called "autism genes" would be aborted if prenatal tests for autism are developed.[75]
Opposition perspectives[edit]
See also: Neurodiversity
Criticisms of the autism rights movement generally focus on difficulties associated with being autistic which they believe the movement downplays, notwithstanding the harms of attempting to 'cure' autism reported by the movement. Critics of the movement[like whom?] argue that anyone on the autism spectrum who is able to express their desire not to be cured must be in a position where they benefit from being autistic or being openly known as autistic, such as gaining a minor celebrity status as an autistic advocate[citation needed]. They mention the fact that well-known autistic public figures tend to be verbal; this can imply to some that they are more likely to be independently successful than autistic people with higher apparent support needs.[93] Some controversy has also been raised regarding some neurodiversity advocates who identify from self-diagnosis and the allegation that this risks neurotypicals identifying themselves as autistic and misrepresenting or minimizing the struggles and issues faced by autistic people[94] as well as potential overdiagnosis when people with lower apparent support needs are diagnosed.[95]
Some[like whom?] feel that the neurodiversity movement is based on wishful thinking designed to gloss over the more serious problems associated with disabling aspects of autism (such as self-harm, high support needs, rejection, and a difficulties around issues of consent[citation needed]), which these critics believe come from the condition itself, not from a society that disables autistic people. 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.[96]
Autism Speaks boycott[edit]
Further information: Autism Speaks § Views
Autism Speaks has faced criticism from autism rights advocates for failing to represent autistic people and for exploitative practices.[97] 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."[98] 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.[99]
Autism Speaks has produced three major films, each met with strong opposition from autism rights advocates. 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 while her daughter is in the same room.[100] I Am Autism is a short video that personifies autism as a narrative voice, which compares itself to several life-threatening diseases[101] and makes the false claim[102] of causing divorce.[103][104] 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.[105]
Because of the number of objections to the organization, Autism Speaks fundraising events have been the object of organized protest.[106][107] Many of these protests are organized by ASAN.[108] 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.[109] 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.[110]