Autistic community

Autism Network International, which a history of the movement calls its first organization, was founded in February 1992 by Jim Sinclair, Donna Williams and Xenia Grant. It began as a pen-pal program and a newsletter, Our Voice.^1,2 It added an email list, ANI-L, and in 1996 an annual retreat in the United States, Autreat, which met for the last time in 2013.^1,2,3 Autscape, a retreat in England modeled partly on Autreat, began in 2005 with about 45 people and by 2019 drew more than 200.³

Autistic people who feel a positive identity with other autistic people tend to report better wellbeing and less depression; the link with anxiety is mixed. In a survey of 272 autistic people aged 16 and over, those who identified more strongly with other autistic people felt better about the group as a whole, which went with higher self-esteem and, through it, less anxiety and depression.⁴ In a separate survey of 184 autistic adults, recruited through UK organizations and online, 51.1% identified with other autistic people strongly enough to count it as a social identity. Stronger identification went with less depression and more positive mental health, but not with anxiety.⁵ Among 121 autistic young people aged 15 to 22, recruited at a UK university summer school, solidarity with other autistic people and satisfaction with being autistic both went with better wellbeing.⁶ A systematic review of 20 quantitative studies found a more positive autistic identity associated with better wellbeing and less depression; results for anxiety and distress were mixed.⁷ In the largest single study, though, solidarity on its own was not linked to mental health (next section).⁸

All of these studies asked people once, so the direction is unknown: people who feel better may also find it easier to feel good about being autistic.

Identifying as autistic and feeling good about it are not the same thing, and the research suggests the second matters more. In 1,443 autistic adults from the Netherlands Autism Register, all the links were small: satisfaction with being autistic went with less anxiety and depression, seeing autism as central to oneself went with slightly more of both, and solidarity with other autistic people went with neither.⁸ In a survey of 140 autistic people aged 16 and over, by the same group as two studies above, those who described autism in more positive terms identified with other autistic people more, and identification went with collective self-esteem, how good a person feels about the group.⁹ In the study of young people, identity measures together added little to explaining social anxiety, though satisfaction on its own went with lower social anxiety.⁶

How other people treat autistic people also matters. In a UK survey of 111 autistic adults, feeling accepted by others went with less depression and stress, separately from accepting oneself; acceptance, measured with single questions, did not go with anxiety.¹⁰ The 2024 review found that a positive autistic identity went with acceptance and support from others, while individual factors were mostly unrelated or unclear.⁷

Researchers call the sense of belonging to the autistic community "community connectedness". In interviews, 20 autistic adults, some of them self-identified, described it as belonging, social ties and shared political purpose, and linked it to higher self-esteem, a sense of direction and a community they had not found elsewhere. Most of that connection happened online. Three participants felt disconnected: autism was not central to who they were, or they held stigma against it; one linked this to a late diagnosis, and two to a father's upset at their childhood diagnosis.¹¹

The idea comes from minority stress research. In a one-time survey of 111 autistic adults, everyday discrimination, internalized stigma and hiding being autistic each went with poorer mental health on at least some measures.¹² A later survey of 196 autistic people found that connectedness went with slightly better wellbeing. It did not soften the link between masking and lower wellbeing, and people who felt more connected also reported more masking. The authors suggest that more connected people may be more aware of discrimination, and may notice masking more as they move between autistic and non-autistic settings.¹³ An unpublished doctoral thesis reports that connectedness weakened the link between minority stress and mental health in a one-time survey, and went with better mental health nine months later in 99 autistic people; it has not been published in a peer-reviewed journal.¹⁴

Many autistic adults in these studies say they feel at ease with other autistic people. In one UK study titled with a participant's words, "I never realised everybody felt as happy as I do when I am around autistic people", 12 autistic adults, 10 of them women, described understanding, being able to be themselves, and happiness among autistic friends and family.¹⁵ A review of 52 qualitative papers found these experiences were often positive and linked to quality of life, though not always: clashing sensory and communication needs and the strain of supporting others also came up.¹⁶ Of the 2,872 participants in the review (2,615 of them autistic), 17 had an intellectual disability, did not speak, or had high support needs.¹⁶ Feeling at ease is not the same as communicating better: in a registered replication with 311 people, information passed along chains of autistic, non-autistic and mixed people with no overall difference, unlike the original study, in which mixed chains did worse.²⁹

Peer support means help from other autistic people, often in groups after a diagnosis. A systematic review of 15 articles on 12 programs, for ages 12 and up, found that all reported benefits such as better wellbeing and self-esteem, but "none of the included studies used a control group" and samples were small.¹⁷ In one UK autistic-led program for newly diagnosed or self-identified adults, 16 participants valued being taught by autistic people and described "unity in diversity"; there was no comparison group.¹⁸ Twelve adults diagnosed in adulthood, interviewed by a team in Edinburgh, described wanting peer support and community connection, but said post-diagnostic support did not match what they needed.¹⁹

In a US program in which autistic peer specialists supported 29 people aged 14 to 41, mostly young men, 90% of the 20 who answered were satisfied, but 70% would recommend it, below the authors' target of 80%.²⁰ A small randomized trial in England and Wales of online peer groups for 70 people aged 16 to 25 found a full trial feasible; it was not designed to test whether the groups worked. Fewer people in the peer-group arm completed the 16-week wellbeing measure (74%, against 91% with usual care), and taking part required enough literacy to use the materials.²¹

Much of the autistic community lives online. In an online survey published in 2014, of 291 autistic and 311 non-autistic people, autistic respondents valued online communication for the control and clarity it gives, for access to similar people and for expressing their true selves; they enjoyed meeting people online more, and keeping up with friends and family online less.²² In a survey of 78 autistic adults, seeing oneself as part of an online community went with higher self-esteem. Thirty-seven percent had been bullied online, at the low end of general-population estimates (37 to 70%), and heavier social media use went with more of it.²³

Online spaces have problems of their own. Twelve autistic adults in Norway described an aggressive tone in some Facebook groups over language (one called it "policing") and over interventions such as ABA; one said they had become less active as a result.²⁴ Of #autism videos on TikTok with at least a million views that showed an autistic person, 87% showed someone the researchers perceived as White.²⁵ Studies that recruit autistic people partly through social media tend to have more women, more educated and employed people, fewer people with intellectual disability, and later diagnoses than population estimates, so much of this research describes one part of the autistic population.²⁶

The community does not reach everyone equally. People with intellectual disability, non-speaking people and people with high support needs are almost absent from the research on autistic company.¹⁶ An organizer of Autscape writes that it has had "minimal success" attracting autistic people with a wider range of ability, and that "many autistic needs are mutually incompatible"; in 2007 a conflict split its committee.³

Conflict happens inside autistic spaces too. In the Scottish interviews, one participant said "there is a heck of a lot of arguing going on on twitter amongst autistic people".¹⁹ In written answers from 142 autistic adults in Australia and New Zealand, some described conflict with other autistic people because they were not compatible, and the authors concluded that a shared neurotype alone does not guarantee compatibility.²⁷ People also disagree about autism itself. In an online survey of 657 people published in 2013, those who identified as autistic, and those aware of neurodiversity, were more likely to see autism as a positive identity needing no cure, while recognition of autism's difficulties did not differ between groups.²⁸

Jim Sinclair, writing in 2005 about the early days of Autism Network International, recalls: "We called it a 'network,' not a 'community.'" Sinclair describes a 1992 gathering of autistic adults as their "first creation of 'autistic space'".^c1 The term autistic space is now used for physical, online or digital spaces made by and for autistic people. Megan Anna Neff writes that through relationships formed there "many of us finally experience a sense of belonging, connectedness, and authentic engagement".^c2 Devon Price says that meeting other autistic people helped more than professional recognition: "nothing aided me in accepting myself and unmasking quite like finding my 'people'".^c3 Jean Winegardner, diagnosed at 38, writes that "the hardest part of growing up as an undiagnosed autistic woman was the aloneness", and that her autistic son, who has autistic adults around him, "will grow up knowing that he is not alone."^c14 Keith, describing meeting another autistic person, says it was "more like we were the same species."^c15

Online spaces come up often. Steve Silberman's history records that Wrong Planet, one of the first autistic forums on the web, was launched in 2004 by two teenagers, Alex Plank and Dan Grover.^c4 Price recommends it as "a long-standing forum" suited to slow, in-depth conversation, alongside hashtags such as #ActuallyAutistic and groups on Reddit.^c5 Sol Smith calls the online autistic community "the most helpful thing" for late-diagnosed autistic people and writes that connecting with other autistic people "will ease your nervous system in ways you can hardly imagine".^c6

Many writers use "neurokin" for people who share their neurotype, a term in use online by early 2021 with no known coiner.^c7,c8 Yenn Purkis, quoted by Bernard Grant, says connecting with neurokin "is like coming home after being in another country for a long time".^c8 Others talk of chosen or found family. Price warns against expecting to find one ready-made, writing that "communities are just networks of relationships" that have to be built, and that a found family is more than "a fleeting social clique".^c9,c10

Some writers describe a culture as well as a community. Kieran Rose writes that "All the markers of a culture are there", in shared communication and language, terminology, social norms, customs, art and writing.^c16 Chloe Farahar sets this Autistic culture, in which autistic people "define what Autistic experience is", against what Farahar calls the "culture of autism", the narrative of pathology, and argues that Autistic culture protects wellbeing.^c17 Michael, writing in his seventies, sees "primary cultural differences between the autism community and the autistic community": he found the community of parents and vendors of treatments hard to take part in, and was drawn to autistic adults instead.^c18

Autistic people have adopted symbols of their own. The infinity symbol is the one many autistic writers treat as the community's. Autistic UK, an autistic-led group, writes that its rainbow form denotes neurodiversity, and in 2018 the group proposed a gold version for autism acceptance, taking the color from gold's chemical symbol, Au, and asking people not to combine it with a puzzle piece.^c22 Orion Kelly writes that autistic people "largely prefer the infinity loop symbol because it represents the infinite differences of all Autistic people, while celebrating our diversities."^c21

Many autistic writers reject the puzzle piece, which some autism charities and parents still use. Kayla Rodriguez writes that it appears in the logos of most autism organizations, "including the famous one by Autism Speaks", and that many autistic people "see the puzzle piece like autistics are missing something crucial when we're not."^c20 Orion Kelly writes that parents often use it "with good intentions", but that the community "largely rejects the puzzle piece symbol as a way of identifying autism"; Jules Edwards puts the objection plainly: "We're not puzzles, we're people."^c21,c23

Writers also name the limits. Megan Griffith writes that the online AuDHD community "often intentionally leaves out high support needs folks".^c11 Aiden, one of the writers in their twenties, found an "'us versus them' school of thinking" in online groups and objects to blaming non-autistic people for everything.^c19 Kayla Rodriguez, a Puerto Rican autistic lesbian, writes that she grew up without seeing anyone like her, and that the BIPOC and LGBTQIA+ communities she belongs to "can be ableist", which makes it hard for autistic people to find their place in them.^c20 Eric Garcia, at a retreat for autistic adults, describes feeling "a sense of ease and tension" at once, worried he was not steeped enough in autistic history to fit in.^c12 Price advises watching "how conflict and critique are handled" in a new group and looking for communities that center Black and brown, transgender and nonverbal autistic people, and warns that some isolated autistic people fall into "abusive, cultlike communities".^c5,c13