The autistic rights movement, also known as the autism rights movement or the autism acceptance movement, is a social movement allied with the disability rights movement. It emphasizes the neurodiversity paradigm, viewing autism as a set of naturally occurring variations in human cognition, a cognitive difference with both strengths and weaknesses, rather than as a disease to be cured or a medical disorder. This paradigm contradicts and diverges from the medical model of disability, without opposing all aspects of it.
There are several core values that are essential in the autism rights movement. The phrase "Nothing about us without us", shared with other disability movements, has become a motto that encompasses these beliefs. The autistic rights movement and its relationship to the younger neurodiversity community have become much stronger over the years. The idea that people who are on the spectrum are allowed to advocate for themselves is now widely accepted.
This idea is generally accepted until there becomes an overlap with the effects of future research. Another core value of the autism rights movement is the right for further research that expands on previous sciences and even debunks possible false information. For the autistic movement this may become a break away if advocacy begins to promote the idea of sameness. Many sectors within the autism rights movement still consider continued search on treatments and the possible eradication of autism. This leaves a division amongst the autism rights movement community.
The autistic rights movement advocates for widespread acceptance of autistic people, as well as the traits and behaviors (e.g., stimming, lack of eye contact, and special interests) associated with autism. New research on stimming behaviors have suggested that not only should it be accepted, it should be encouraged. The movement also actively advocates for autistic people to socialize on their own terms, and to mitigate the double empathy problem.
The movement places a large emphasis on goals that align with the neurodivergence movement, such as the idea that autism should not be labeled as a defect but rather be viewed as a form of bio-variance that should be accepted and embraced. Autistic rights activist push to reform, advance, and foster autism-oriented support services, interventions or therapies in accordance with neurodiversity principles to emphasize coping skills for challenging situations. The neurodivergence framework aims to emphasize the importance of these reforms following the concept that all unique personalities should be acceptable. The movement also shadow cases the importance of interventions that create supportive environments that facilitate the strengths and weaknesses of the individual.
The movement criticizes therapies and interventions that—implicitly or explicitly, unintentionally or intentionally—encourage masking behaviors associated with autism and imitating neurotypical social behaviors. According to research, masking behaviors may be linked to long term negative effects such as anxiety, depression and exhaustion within individuals with autism. Further evidence supports the idea that some therapies and interventions might also reinforce masking, as a substantial proportion of autistic adults who experienced some forms of applied behavior analysis based interventions reported adverse effects such as detrimental effects on their mental health due to increased or excessive camouflaging or masking.
History
1980s–1990s: Early autistic-run organizations, newsletters, and conferences
Jim Sinclair is credited as the first person to communicate the autistic rights perspective. 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". 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. 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. New York Times journalist Amy Harmon considers the essay a touchstone for the autistic rights movement, and it has been mentioned in the New York Magazine.
ANI established the yearly retreat "Autreat" in 1996. Autreat was a retreat and conference held in the United States specifically for autistic people and was held every year from 1996 to 2013, except in 2001. The theme of the first conference in 1996 was "Celebrating Autistic Culture", and it had close to 60 participants. It was hosted at Camp Bristol Hills in Canandaigua, New York. Participants compared their movement to gay rights activists, or the Deaf culture, where sign language is preferred over surgery that might restore hearing. The success of Autreat later inspired similar retreats, such as the Association for Autistic Community's conference, Autspace, in the United States; Autscape in the United Kingdom; and Projekt Empowerment in Sweden.
The emergence of the Internet as well as social media has played a large role in the history of self-advocacy. In 1993 Mosaic was developed, an Internet browser that would open the World Wide Web and make it accessible to almost anyone. This Internet browser did not require Internet addresses or the traditional keyboard commands. The incorporation of new databases and technological advancement allowed for the expansion of autistic presence on the web. This transition has led to the increase and the ease of self-advocacy for autistic individuals.
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 forms of neurodivergence, such as ADHD, dyslexia, and dyscalculia. American writer Harvey Blume was a member of the list and described it as embracing "neurological pluralism" in a 1997 article in The New York Times. Blume discussed the concept of neurological diversity with Australian sociologist Judy Singer. The term "neurodiversity" was first published in Harvey Blume's 1998 article in The Atlantic and again, in Judy Singer's 1998 Honours thesis.
2000s–2010s: The rise of self-advocacy
Aspies For Freedom (AFF) was founded in 2004. They established June 18 as Autistic Pride Day starting in 2005. AFF member Joe Mele initiated a protest against the National Alliance for Autism Research in 2004.
In 2004, Canadian autism researcher Michelle Dawson challenged applied behavior analysis (ABA), a common behavioral intervention for autistic people, on ethical grounds. She testified in Auton v. British Columbia against the lack of required government funding for ABA. That same year, The New York Times covered the autistic rights perspective by publishing journalist Amy Harmon's article, "How About Not Curing Us, Some Autistics Are Pleading".
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. The project is affiliated with the Autistic Self Advocacy Network (ASAN) and other activist groups in North America. The project was dedicated to promoting acceptance and accommodations for autistic people in society and was primarily supported by autistic people. The website for TAAP disappeared a decade later, but the idea of promoting acceptance has now been adopted with other campaigns such as Autism Acceptance Month.
From 2005 to 2007, TAAP organized arts-based events. TAAP also sponsored the Joy of Autism: Redefining Ability and Quality of Life events and lectures in Toronto, featuring dozens of autistic artists and speakers such as Jim Sinclair, Michelle Dawson, Phil Schwartz, Morton Ann Gernsbacher, and Larry Bissonnette.
In 2007, an ASAN initiative helped halt the New York Child Study Campaign. The advertising campaign launched in 2007 depicted conditions like autism and ADHD as kidnappers holding children for ransom. 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". ASAN halted another advertising campaign in 2008 where PETA had implied a link between autism and casein in milk. Phone calls, letters, and petitions organized by ASAN contributed to the removal of the advertisements.
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 and Paige Layle.
Autism advocacy made progress within the traditional media, making its way into influential business publications such as Harvard Business Review and Fast Company. 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.
Neurodiversity and autistic self-advocacy movement
Judy Singer describes neurodiversity as a middle ground between the two dominating models of disability, the medical model and strong versions of the social model, dismissing both of them as insufficiently capturing the solution for—and cause of—disability.
Steve Silberman describes neurodiversity as seeing the virtue of different forms of neurodivergence while taking into consideration that they also convey challenges. 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 nonspeaking autistics, this also means equal and fair access to communication, such as AAC."
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".
Autistic people are considered to have neurocognitive differences that give them distinct strengths and weaknesses, and they are capable of succeeding when appropriately accommodated and supported. 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.
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 but are consistent in the view that autism cannot be separated from an autistic person. The movement opposes therapies that aim to make children "indistinguishable from their peers". Instead, they advocate for accommodations in schools and work environments and including autistic people when making decisions that affect them. Neurodiversity advocates oppose researching a "cure" for autism, and instead support research that helps autistic people thrive as they are.
An analysis of data from the UK and Hungary in 2017 found evidence that autistic or intellectually disabled self-advocates are rarely involved in leadership or decision-making within organisations. 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.
Perspectives
Autism diagnosis
The autistic rights movement rejects the classification by psychiatrists of autism as a disorder. 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 likely due to an expansion of diagnostic criteria rather than an epidemic.
Rejection of functioning labels
The autistic rights movement rejects the use of the labels "high-functioning" and "low-functioning" when describing different autistic people, arguing that the strengths and struggles of autistic people are on a spectrum and not linear.
Opposition to cure and prevention
The autistic rights movement opposes "curing" autism, 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. The autistic rights movement is a part of the larger disability rights movement and acknowledges the social model of disability. Within the model, struggles faced by autistic people are viewed as discrimination rather than deficiencies. 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". Most members of the autistic community 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.
Autistic rights activists are opposed to attempts to eliminate autism genes, and argue that doing so would decrease human genetic diversity. In particular, there is opposition to prenatal genetic testing of autism in fetuses, which some believe might be possible in the future. 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. However, the genetics of autism have proven to be extremely complex. 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.
Some people lament that professionals, such as social workers, may discourage autistic people from having children. Activists are concerned that the "ultimate cure will be a genetic test to prevent autistic children from being born" and that most fetuses with so-called "autism genes" would be aborted if prenatal tests for autism are developed.
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.
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."