Central to the autism 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 people with autism, and that autistic people have the final say in what language should be used when talking about autism. A common motto used by the autism rights movement, borrowed from the disability rights movement, is the phrase "nothing about us without us".[6]
Autism 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 the condition, for autistic people to socialize on their own terms,[7] and to mitigate the double empathy problem.[8][9] The movement seeks to reform and foster autism-oriented interventions and 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.[11][12][13][14][15][16]
The movement criticizes therapies and interventions that—implicitly or explicitly—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 camouflaging or autistic masking.[22][23][24]
The movement also advocates for people with autism to be recognized as a minority group rather than as having a disorder. Within the autism rights movement, autism is often compared to different variations in human biology not categorized as disorders, such as homosexuality.[25]
History
1980s–1990s: Autistic-run organizations, newsletters, and conferences
Jim Sinclair is credited as the first person to communicate the autism 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 autism 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]
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 autism 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.
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 people without autism, 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.[54][55]
Steve Silberman describes neurodiversity as seeing the virtue of different conditions while taking into consideration that the conditions also convey challenges.[56] 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."[57]
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".[58]
Autistic people are considered to have neurocognitive differences[59] that give them distinct strengths and weaknesses, and they are capable of succeeding when appropriately accommodated and supported.[2][60] 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[59] 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[61] and including autistic people when making decisions that affect them.[62] 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 self-advocates with autism or intellectual disabilities are rarely involved in leadership or decision-making within organisations.[63] 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.[64]
Perspectives
Autism diagnosis
The Autistic Self-Advocacy Network (ASAN) uses a seven-colored heptagonal symbol to represent both the autistic spectrum and the idea of diversity.
The autism 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.[65]
Rejection of functioning labels
The autism rights movement rejects the use of the labels "high-functioning" and "low-functioning" when describing different people with autism, arguing that the strengths and struggles of people with autism are on a spectrum and not linear.[66]
Opposition to cure and prevention
The autism 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.[67][68] The autism rights movement is a part of the larger disability rights movement and acknowledges the social model of disability.[69] Within the model, struggles faced by autistic people are viewed as discrimination rather than deficiencies.
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.[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.[70] However, the genetics of autism have proven to be extremely complex.[71] 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.[72]
Some people[who?] lament that professionals, such as social workers, may discourage autistic people from having children.[73] 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.[68]
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.[74]
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."[75]
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][76]
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 art representing the natural diversity of human minds
Some autistic activists[which?] suggest that life with autism is like being born among people who speak a different language, 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 autism 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, Autism 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]
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 people with autism 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 has autism, 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][84] and such findings were consistent across various age groups.[85] There have been accounts and qualitative evidence that some forms of behavioral interventions increase masking or worsen mental health for some autistic people.[86][87][88][89][90] American autism rights advocate Ari Ne'erman argues that by addressing individual traits and symptoms of autism, it is possible to reduce harmful behavior and avoid encouraging camouflaging behaviors.[91]
Autism Speaks has faced criticism from autism rights advocates for failing to represent autistic people and for exploitative practices.[92]
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".[93]
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.[94]
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 autism 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.[95]I Am Autism is a short video that personifies autism as a narrative voice, which compares itself to several life-threatening diseases[96] and makes the false claim[97] of causing divorce.[98][99]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.[100]
Autism Speaks fundraising events have been the object of several organized protests by autism rights advocates.[101][102][103]
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,[104] 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.[105]
Autism rights groups
There are several organizations in the autism 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.
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.
Adaptive baseball/softball organization formed by Taylor C. Duncan in 2016 to raise awareness and acceptance for autistic teens and adults through sport.[107]
Washington state organization formed by Arzu Forough in 2008 to advocate for WA state individual access balanced with systems change advocacy and policy reform.[108]
Yes
Events and activities
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,[109] 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.[110][111][112] These vigils are now held annually on 1 March globally, often by local self-advocacy and disability rights groups.[112]
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.[113][114]
Autism rights activists organize protests against organizations they consider objectionable, most notably Autism Speaks and the Judge Rotenberg Center.[115][116][117][118] In the United States, activists affiliated with ASAN have organized numerous protests against Autism Speaks events, typically protesting and leafleting at fundraising walks.[119] 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.[120]
Terminology
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 autism rights movement encourages the use of identity-first terminology[121] 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,[122][123] and are discouraged by both the American Psychological Association's style guide and National Center on Disability and Journalism's style guide.[124][125]
The autistic community has developed their own terminology such as:
Aspie – a person with Asperger's syndrome.[68] Not as frequently used with Aspergers being removed as an official diagnosis.
Autistics and cousins (AC) – a cover term including aspies, auties, and their "cousins", i.e., people with some autistic traits but no formal diagnosis[127]
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 on the autism spectrum.
Allistic – a person who is not autistic.[128] Originally it was used satirically to describe those without autism.[129]
Autistic pride refers to being pride of being autistic and promotes the idea that people with autism are not defective.[130] Autistic pride 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.[68][131][132]
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.[133]
Because many autistics find it easier to communicate online than in person, a large number of online resources are available.[131] 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][134] It gives autistic individuals a way to communicate and form online communities.[135]
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.[73] 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]
Minnesota governor Mark Dayton declared the World Autism Awareness Day on 2 April 2013.
World Autism Awareness Day, sometimes referred to as World Autism Day, is marked yearly on 2 April. It was designated by the United Nations General Assembly at the end of 2007.[136]
Some autism rights advocates have campaigned to rename it Autism Acceptance Day because of a misconception that the day is affiliated with Autism Speaks.[137]
Autism Sunday is a global Christian event observed annually on the second Sunday of February. It is supported by church leaders[which?] and organisations[which?] around the world. The event was initiated by the founders of Autism Awareness Campaign UK, Charika Corea and Ivan Corea. Autism Sunday was launched in London in 2002 with a service at St. Paul's Cathedral.[138]
The year 2002 was declared Autism Awareness Year in the United Kingdom—the idea was initiated by Ivan and Charika Corea, parents of an autistic child, Charin.[139]
The 2002 Autism Awareness Year helped raise awareness of the serious issues concerning autism and Asperger's syndrome across the United Kingdom.[141] A major conference, Autism 2002, was held at the King's Fund in London with debates in the House of Commons and the House of Lords in Westminster. Autism awareness ribbons were worn to mark the year.[142]
Some British autism advocates want autistic people acknowledged as a minority rather than as disabled, because they say that "disability discrimination laws don't protect those who are not disabled but who 'still have something that makes them look or act differently from other people.'"[68] But the autism community is split over this issue, and some view this notion as radical.[68]
Autistics Speaking Day is a yearly event designated on 1 November, a self-advocacy campaign run by people with autism to raise awareness and challenge negative stereotypes about autism by speaking for themselves and sharing their stories. The first Autistics Speaking Day was held in 2010.[145] According to Corina Becker, one of the early founders, the day is to "acknowledge our difficulties while sharing our strengths, passions, and interests."[146] The idea for the event developed out of opposition to a Communication Shutdown fundraising campaign led by United States charity Autism Speaks. Participants had been asked to "simulate having autism" by straying from all forms of online communication for one day. The 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.[147][148]
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.[149] 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.[149]
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 which the Autistic community found harmful and insufficient.[150][151] Autism Acceptance Day is now held every April.[150] "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. Rather than making autism into a crippling disability, acceptance integrates those on the autistic spectrum into everyday society. Instead of encouraging people to wear blue as Autism Awareness Day does, Autism Acceptance Day encourages people to wear red.[152]
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.[153]
Scholarship
ASDs 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.[154] Sociological research has also investigated how social institutions, particularly families, cope with the challenges associated with autism.[155]
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.[156] The study also found that implicit biases about autism were harder to overcome for non-autistic people.[156]
Much of the public perception of autism is based on its portrayals in biographies, movies, novels, and TV series. Many of these portrayals have been inaccurate, and have contributed to a divergence between public perception and the clinical reality of autism.[157] For example, in the 2005 movie Mozart and the Whale, the opening scene gives four clues that a leading character has Asperger syndrome, and two of these clues are extraordinary savant skills. The savant skills are not needed in the film, but in movies savant skills have become a stereotype for the autism spectrum, because of the incorrect assumption that most autistic people are savants.[158]
Some works from the 1970s have autistic characters,[which?] who are rarely labeled.[159] In contrast, in the 2013 BBC2 television miniseries The Politician's Husband, the impact of Noah Hoynes' Asperger syndrome on the boy's behavior and on his family, and steps Noah's loved ones take to accommodate and address it, are prominent plot points in all three episodes.
Popular media have depicted special talents of some children with autism, including exceptional abilities as seen in the 1988 movie Rain Man.[160]
Since the 1970s, fictional portrayals of people with autism, Asperger syndrome, and other ASCs have become more frequent.[159] Public perception of autism is often based on these fictional portrayals in novels, biographies, movies, and TV series. These depictions of autism in media today are often made in a way that brings pity to the public and their concern of the topic, because their viewpoint is never actually shown, leaving the public without knowledge of autism and its diagnosis.[161][158] Portrayals in the media of characters with atypical abilities (for example, the ability to multiply large numbers without a calculator) may be misinterpreted by viewers as accurate portrayals of all autistic people and of autism itself.[162] Additionally, the media frequently depicts autism as only affecting children, which promotes the misconception that autism does not affect adults.[163]
Notable individuals known to have Asperger syndrome include Craig Nicholls,[167] lead singer, songwriter, guitarist and only constant member of the Australian rock band The Vines, who was diagnosed in 2004,[168] and actor Paddy Considine.[169][170]
Swedish environmentalist Greta Thunberg, who in August 2018 started the "School strike for climate" movement, has explained how the "gift" of living with Asperger syndrome helps her "see things from outside the box" when it comes to climate change.[171] In an interview with presenter Nick Robinson on BBC Radio 4's Today, the 16-year-old activist said that autism helps her see things in "black and white". She went on to say:[172]
It makes me different, and being different is a gift, I would say. It also makes me see things from outside the box. I don't easily fall for lies; I can see through things. I don't think I would be interested in the climate at all, if I had been like everyone else. Many people say that it doesn't matter, you can cheat sometimes. But I can't do that. You can't be a little bit sustainable. Either you're sustainable, or not sustainable. For way too long the politicians and people in power have got away with not doing anything at all to fight the climate crisis and ecological crisis, but we will make sure that they will not get away with it any longer.
Additionally, media speculation of contemporary figures as being on the autism spectrum has become popular in recent times. New York magazine reported some examples, which included that Time magazine suggested that Bill Gates is autistic, and that a biographer of Warren Buffett wrote that his prodigious memory and "fascination with numbers" give him "a vaguely autistic aura". The magazine also reported that on Celebrity Rehab, Drew Pinsky deemed basketball player Dennis Rodman a candidate for an Asperger's diagnosis, and the UCLA specialist consulted "seemed to concur". Nora Ephron criticized these conclusions, writing that popular speculative diagnoses suggest autism is "an epidemic, or else a wildly over-diagnosed thing that there used to be other words for".[173] The practice of diagnosing autism in these cases is controversial.[174][175]
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.[176]
Asperger syndrome (AS), also known as Asperger's syndrome or Asperger's, was a diagnosis used to describe a neurodevelopmental disorder characterized by significant difficulties in social interaction and nonverbal communication, along with restricted, repetitive patterns of behavior and interests. Asperger syndrome has been merged with other conditions into autism spectrum disorder (ASD) and is no longer a diagnosis in the WHO's ICD-11 or the APA's DSM-5-TR. It was considered milder than other diagnoses which were merged into ASD due to relatively unimpaired spoken language and intelligence.
The disability rights movement is a global social movement that seeks to secure equal opportunities and equal rights for all people with disabilities.
Diagnoses of autism have become more frequent since the 1980s, which has led to various controversies about both the cause of autism and the nature of the diagnoses themselves. Whether autism has mainly a genetic or developmental cause, and the degree of coincidence between autism and intellectual disability, are all matters of current scientific controversy as well as inquiry. There is also more sociopolitical debate as to whether autism should be considered a disability on its own.
The neurodiversity paradigm is a framework for understanding human brain function that recognizes the diversity within sensory processing, motor abilities, social comfort, cognition, and focus as neurobiological differences. This diversity falls on a spectrum of neurocognitive differences. The neurodiversity paradigm argues that diversity in neurocognition is part of humanity and that some neurodivergences generally classified as disorders, such as autism, are differences and disabilities that are not necessarily pathological. Neurotypical individuals are those who fall within the average range of functioning and thinking.
Jim Sinclair is an American autistic activist and writer who helped pioneer the neurodiversity movement. Sinclair, along with Xenia Grant and Donna Williams, formed Autism Network International (ANI). Sinclair became the original coordinator of ANI. Sinclair is an advocate for the anti-cure position on autism, arguing that autism is an integral part of a person's identity and should not be cured. Sinclair is intersex and uses Xe/Xem/Xyr pronouns.
Autistic Pride Day is a pride celebration for autistic people held on 18 June each year. Autistic pride recognises the importance of pride for autistic people and its role in bringing about positive changes in the broader society.
The following outline is provided as an overview of and topical guide to autism:
Self-advocacy is the act of speaking up for oneself and one's interests. It is used as a name for civil rights movements and mutual aid networks for people with intellectual and developmental disabilities. The term arose in the broader civil rights movements of the 1960s and 1970s, and is part of the disability rights movement. Today there are self-advocacy organizations across the world.
Wrong Planet is an online community for "individuals with Autism, Asperger's Syndrome, ADHD, PDDs, and other neurological differences". The site was started in 2004 by Dan Grover and Alex Plank and includes a chatroom, a forum, and articles describing how to deal with daily issues. Wrong Planet has been referenced by the mainstream U.S. media. Wrong Planet comes up in the special education curriculum of many universities in the United States. A page is dedicated to Wrong Planet and its founder in Exceptional Learners: Introduction to Special Education.
Societal and cultural aspects of autism or sociology of autism come into play with recognition of autism, approaches to its support services and therapies, and how autism affects the definition of personhood. The autistic community is divided primarily into two camps; the autism rights movement and the pathology paradigm. The pathology paradigm advocates for supporting research into therapies, treatments, and/or a cure to help minimize or remove autistic traits, seeing treatment as vital to help individuals with autism, while the neurodiversity movement believes autism should be seen as a different way of being and advocates against a cure and interventions that focus on normalization, seeing it as trying to exterminate autistic people and their individuality. Both are controversial in autism communities and advocacy which has led to significant infighting between these two camps. While the dominant paradigm is the pathology paradigm and is followed largely by autism research and scientific communities, the neurodiversity movement is highly popular among most autistic people, within autism advocacy, autism rights organizations, and related neurodiversity approaches have been rapidly growing and applied in the autism research field in the last few years.
John Elder Robison is the American author of the 2007 memoir Look Me in the Eye, detailing his life with undiagnosed Asperger syndrome and savant abilities, and of three other books. Robison wrote his first book at age 49.
The Autistic Self Advocacy Network (ASAN) is an American 501(c)(3) nonprofit advocacy organization run by and for individuals on the autism spectrum. ASAN advocates for the inclusion of autistic people in decisions that affect them, including: legislation, depiction in the media, and disability services.
Autism Speaks Inc. is a controversial American non-profit autism awareness organization and the largest autism research organization in the United States. It sponsors autism research and conducts awareness and outreach activities aimed at families, governments, and the public. It was founded in February 2005 by Bob Wright and his wife Suzanne, a year after their grandson Christian was diagnosed with autism. The same year as its founding, the organization merged with Autism Coalition for Research and Education. It then merged with the National Alliance for Autism Research in 2006 and Cure Autism Now in 2007.
Ari Daniel Ne'eman is an American disability rights activist and researcher who co-founded the Autistic Self Advocacy Network in 2006. On December 16, 2009, President Barack Obama announced that Ne'eman would be appointed to the National Council on Disability. After an anonymous hold was lifted, Ne'eman was unanimously confirmed by the United States Senate to serve on the Council on June 22, 2010. He chaired the council's Policy & Program Evaluation Committee making him the first autistic person to serve on the council. In 2015, Ne'eman left the National Council on Disability at the end of his second term. He currently serves as a consultant to the American Civil Liberties Union. He is currently an Assistant Professor at the Department of Health Policy and Management of Harvard University.
Autism, or autism spectrum disorder (ASD), is a neurodevelopmental disorder characterized by repetitive, restricted, and inflexible patterns of behavior, interests, and activities; deficits in social communication and social interaction; and the presence of high or low sensory sensitivity. A formal diagnosis requires that symptoms cause significant impairment in multiple functional domains, in addition to being atypical or excessive for the individual's age and sociocultural context.
Diagnosis, treatment, and experiences of autism varies globally. Although the diagnosis of autism is rising in post-industrial nations, diagnosis rates are much lower in developing nations.
The history of autism spans over a century; autism has been subject to varying treatments, being pathologized or being viewed as a beneficial part of human neurodiversity. The understanding of autism has been shaped by cultural, scientific, and societal factors, and its perception and treatment change over time as scientific understanding of autism develops.
NeuroTribes: The Legacy of Autism and the Future of Neurodiversity is a book by Steve Silberman that discusses autism and neurodiversity from historic, scientific, and advocacy-based perspectives. Neurotribes was awarded the Samuel Johnson Prize in 2015, and has received wide acclaim from both the scientific and the popular press. It was named to a number of "best books of 2015" lists, including The New York Times Book Review and The Guardian.
Loving Lampposts is a 2010 documentary film directed by Todd Drezner, exploring the neurodiversity movement and the principle of autism acceptance through a series of interviews and candid footage. Drezner is the father of an autistic child whose attachment to and fascination with lampposts gave the film its title.
Autistic supremacism, also referred to as Aspie supremacism, is an ideological school of thought followed within certain segments of the autism community, suggesting that individuals formerly diagnosed with Asperger syndrome possess superior traits compared to both neurotypical individuals and other autistic people. The ideology has been criticized by disability researchers and members of the autism community for perpetuating harmful hierarchies within the community and potentially reinforcing broader discriminatory attitudes.
↑ Finke, Erinn H.; Dunn, Danny H. (23 December 2023). "Neurodiversity and double empathy: can empathy disconnects be mitigated to support autistic belonging?". Disability & Society: 1–24. doi:10.1080/09687599.2023.2295802.
↑ Dwyer, Patrick; Gurba, Ava N; Kapp, Steven K; Kilgallon, Elizabeth; Hersh, Lynnette H; Chang, David S; Rivera, Susan M; Gillespie-Lynch, Kristen (18 September 2024). "Community views of neurodiversity, models of disability and autism intervention: Mixed methods reveal shared goals and key tensions". Autism. doi:10.1177/13623613241273029. PMID39291753.
↑ Schuck, Rachel K.; Geng, Alicia; Doss, Yvette; Lin, Florence; Crousore, Hannah; Baiden, Kaitlynn M. P.; Dwyer, Patrick; Williams, Zachary J.; Wang, Mian (January 2024). "A qualitative investigation into autistic adults' perspectives on intervention goals for autistic children". Neurodiversity. 2. doi:10.1177/27546330241266718.
↑ Zhuang, Sici; Tan, Diana Weiting; Reddrop, Susan; Dean, Lydia; Maybery, Murray; Magiati, Iliana (November 2023). "Psychosocial factors associated with camouflaging in autistic people and its relationship with mental health and well-being: A mixed methods systematic review". Clinical Psychology Review. 105: 102335. doi:10.1016/j.cpr.2023.102335. PMID37741059.
↑ Klein, Jessica; Krahn, Rachel; Howe, Stephanie; Lewis, Jessi; McMorris, Carly; Macoun, Sarah (7 October 2024). "A systematic review of social camouflaging in autistic adults and youth: Implications and theory". Development and Psychopathology: 1–15. doi:10.1017/S0954579424001159. PMID39370528.
↑ Khudiakova, Valeria; Russell, Emmeline; Sowden-Carvalho, Sophie; Surtees, Andrew D.R. (October 2024). "A systematic review and meta-analysis of mental health outcomes associated with camouflaging in autistic people". Research in Autism Spectrum Disorders. 118: 102492. doi:10.1016/j.rasd.2024.102492.
↑ Jaarsma, Pier; Welin, Stellan (March 2012). "Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement". Health Care Analysis. 20 (1): 20–30. doi:10.1007/s10728-011-0169-9. PMID21311979.
↑ Dinh, Ann (2024). Don't Mourn for Us: The Autistic Life of Jim Sinclair and an Extraordinary Story of Neurodiversity. Independently published. ASINB0DG6T67TD.[pageneeded][self-published source?]
↑ Blume, Harvey (1998). NeurodiversityArchived 4 June 2019 at the Wayback Machine . On the neurological underpinnings of geekdom. The Atlantic, September 1998.
↑ Seidel, Kathleen; Hendren, Robert (28 March 2005). "The 'Autism Epidemic' & Real Epidemics"(Email exchange). neurodiversity.com. Archived from the original on 2 December 2016. Retrieved 4 January 2008.
↑ CM (2007). "The genetics of autistic disorders and its clinical relevance: a review of the literature". Mol Psychiatry. 12 (1): 2–22. doi:10.1038/sj.mp.4001896. PMID17033636.
↑ Cook, Julia; Hull, Laura; Crane, Laura; Mandy, William (2021). "Camouflaging in autism: A systematic review". Clinical Psychology Review. 89: 102080. doi:10.1016/j.cpr.2021.102080. PMID34563942. While significant variation was noted across individual study findings, much of the existing literature supported three preliminary findings about the nature of autistic camouflaging: (1) adults with more self-reported autistic traits report greater engagement in camouflaging; (2) sex and gender differences exist in camouflaging; and (3) higher self-reported camouflaging is associated with worsening in mental health outcomes.
↑ Khudiakova, Valeria; Russell, Emmeline; Sowden-Carvalho, Sophie; Surtees, Andrew D. R. (2024). "A systematic review and meta-analysis of mental health outcomes associated with camouflaging in autistic people". Research in Autism Spectrum Disorders. 118: 102492. doi:10.1016/j.rasd.2024.102492.
↑ Ne’eman, Ari; Pellicano, Elizabeth (2022). "Neurodiversity as Politics". Human Development. 66 (2): 149–157. doi:10.1159/000524277. PMC9881465. PMID36714278. By taking a trait-oriented approach to operationalizing neurodiversity, it is possible to address intrinsically harmful disability-related traits, such as self-injury, lack of communication, or anorexia, while also rejecting and fighting against the clinical passing demands embedded within so much of autism service-provision and research practice (Ne'eman, 2021).
↑ John Elder Robison (13 November 2013). "I resign my roles at Autism Speaks". John Elder Robison's personal website. Archived from the original on 14 November 2013. Retrieved 28 July 2014.
↑ Murray, Stuart (2008). Representing Autism: Culture, Narrative, Fascination. Liverpool University Press. p.135. ISBN978-1-84631-092-8. ...[the film] drew substantial criticism from disability rights advocates because of its concentration on the condition as one of problems and difficulties, especially for parents. It created particular controversy when one of the mothers being interviewed, discussing the struggles she had endured in searching for a school for her child, commented that the only reason she had not put her autistic daughter in her car and driven off of a bridge was because she has another daughter, who does not have autism.
↑ "Bias Free Language Disability". American Psychological Association Style Guide. American Psychological Association. August 2021. Archived from the original on 22 April 2022. Retrieved 1 June 2022.
↑ Costello, Mary (January–February 2006). "Autistic Pride"(PDF). InTouch: 26–7. Archived from the original(PDF) on 20 November 2007. Retrieved 24 November 2007.
↑ Bagatell N (2007). "Orchestrating voices: autism, identity and the power of discourse". Disabil Soc. 22 (4): 413–26. doi:10.1080/09687590701337967.
↑ Sarrett, J C (June 2011). "Trapped children: popular images of children with autism in the 1960s and 2000s". Journal of Medical Humanities. 32 (2): 141–53. doi:10.1007/s10912-010-9135-z. PMID21225325.
↑ Nolen-Hoeksema S (2014). Abnormal Psychology. New York, NY: McGraw-Hill Education. p.292. ISBN978-0-07-803538-8.
↑ Holton, Avery E.; Farrell, Laura C.; Fudge, Julie L. (April 2014). "A Threatening Space?: Stigmatization and the Framing of Autism in the News". Communication Studies. 65 (2): 189–207. doi:10.1080/10510974.2013.855642.
↑ Zwerdling, Daniel (April 2002). "Kill Them With Kindness". American RadioWorks. Archived from the original on 17 August 2004. Retrieved 8 November 2007.
Davidson, Joyce (November 2008). "Autistic culture online: virtual communication and cultural expression on the spectrum". Social & Cultural Geography. 9 (7): 791–806. doi:10.1080/14649360802382586.
Grandin, Temple. (2011). Thinking in Pictures, Expanded Edition: My Life with Autism. New York: Vintage. ISBN978-1935274216
Rossetti Z, Ashby C, Arndt K, Chadwick M, Kasahara M (2008). "'I like others to not try to fix me': agency, independence, and autism". Intellect Dev Disabil. 46 (5): 364–75. doi:10.1352/2008.46:364-375. PMID19090638.
This page is based on this Wikipedia article Text is available under the CC BY-SA 4.0 license; additional terms may apply. Images, videos and audio are available under their respective licenses.
