Autistic rights movement
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.
Central to the autistic 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 autistic people, and that autistic people have the final say in what language should be used when talking about autism. A common motto used by the autistic rights movement, borrowed from the disability rights movement, is the phrase "nothing about us without us".
Autistic rights movement advocates strive for widespread acceptance of people with autism, as well as the traits and behaviors associated with autism, for autistic people to socialize on their own terms, and to mitigate the double empathy problem. The movement seeks to reform, advance, and foster autism-oriented support services, interventions or therapies in accordance with neurodiversity principles to emphasize coping skills for challenging situations, promote adaptive skills, and promote psychological well-being and mental health, through incorporating voices and perspectives of autistic people in intervention reforms, advancements, and developments.
The movement criticizes therapies and interventions that—implicitly or explicitly, unintentionally or intentionally—encourage masking behaviors associated with autism and imitating neurotypical social behaviors, 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 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 or excessive camouflaging or masking. Limited but a few quantitative studies found that such adverse effects appear to be experienced by a substantial proportion of autistic people who received these interventions.
The movement also advocates for autistic people to be recognized as a minority group rather than as having a disorder. Within the autistic rights movement, autism is often compared to different variations in human biology not categorized as disorders, such as homosexuality.
History
1980s–1990s: Autistic-run organizations, newsletters, and conferences
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 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" in the ANI newsletter with an anti-cure perspective on autism. Some have considered the essay a touchstone for the autistic rights movement, and it has been mentioned in The New York Times and 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. 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.
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. 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 Judy Singer's 1998 Honours thesis and in Harvey Blume's 1998 article in The Atlantic.
2000s–2010s: The rise of self-advocacy
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. AFF also initiated protests against Cure Autism Now and the Judge Rotenberg Center.In 2004, Canadian autism researcher Michelle Dawson challenged applied behavior analysis, 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. 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 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 and other activist groups in North America.
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.
The internet has provided a space for members of the autism movement to organize and communicate independently without relying on non-autistic people, 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.
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 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.Steve Silberman describes neurodiversity as seeing the virtue of different conditions while taking into consideration that the conditions 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 nonverbal 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.