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Identity, community and disability

Identity, community and disability

An overview of autistic identity, community and disability: neurodiversity, models of disability, language and labels, ableism, self-advocacy, the autistic community, self-identification, and how the media portrays autism. Each section links to a full entry.

A short tour of how autistic people think and talk about who they are, from neurodiversity and the words people use to unfair treatment, speaking up, finding each other and finding yourself. Each part links to a longer page.

Last reviewed 12 October 2026 · one person's reading of the research · 37 research and 5 community sources

Neurodiversity Established

In community writing, neurodiversity means the natural variety of human minds: Nick Walker, an autistic scholar, defines it as "the diversity of human minds, the infinite variation in neurocognitive functioning within our species."c1 The idea grew on Independent Living on the Autistic Spectrum (InLv), an email list for autistic people that Martijn Dekker started in 1996, and as far as is known the single word first appeared in print in September 1998, in an article in The Atlantic by the journalist Harvey Blume.1,c2,2 Steve Silberman's 2015 history and Devon Price credit Judy Singer, an Australian sociology student and list member, with coining it, but in a 2024 letter six scholars argued that the concept "was collectively theorised and developed by autistic activists" and that "it is possible we will never know who coined the term".c3,c4,2 Singer replies that she coined the word, not the concept.c5

Full entryNeurodiversity The idea that human minds vary naturally, and the movement built on it. What the words mean, how the term arose on an autistic email list in the 1990s, what surveys of autistic people and others show, and the arguments over people with the highest support needs.

Neurodiversity means that human minds come in many natural kinds. The autistic writer Nick Walker calls it "the diversity of human minds".c1 The idea grew on an email list for autistic people that started in 1996.1 As far as anyone knows, the word was first printed in 1998, in a magazine article.c2,2 Some books say a woman named Judy Singer made up the word.c3,c4 Six scholars wrote in 2024 that many autistic people built the idea together. They said we may never know who made up the word.2 Singer says she made up the word, but not the idea.c5

Full entryNeurodiversity The idea that human minds are naturally different from each other, and the movement that grew from it. What the words mean, where they came from, what surveys show, and what people argue about.
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Established

Summarizes Neurodiversity. The definition is Nick Walker's, quoted from a dated essay as community usage, not a finding. The dates rest on documents that can still be read. Who first used the single word is disputed, and the record cannot settle it.

Established

The meaning comes from an autistic writer, and it tells you how people use the word. The dates come from old writings we can still read. Nobody can be sure who first used the word.

Models of disability Hypothesis

In the medical model, disability is a problem inside the person, and the two diagnostic manuals, DSM-5 and ICD-11, list autism spectrum disorder as a neurodevelopmental disorder made up of "persistent deficits" in social communication and interaction, together with restricted, repetitive and inflexible patterns of behavior, interests or activities.3 The social model began with disabled activists in Britain: in a 1976 booklet, the Union of the Physically Impaired Against Segregation (UPIAS) defined disability as the disadvantage caused by a social organization "which takes no or little account of people who have physical impairments".4 Pellicano and den Houting write that the neurodiversity paradigm is closely aligned with the social model, in which disability comes from environments that do not accommodate a person's characteristics more than from the characteristics themselves.3 Bottema-Beutel and colleagues write that current versions of the social model accept that social barriers do not explain every part of disability.5

Full entryModels of disability The medical model, the social model and the positions in between: where each came from, how each is applied to autism, and what studies show about which models autistic people hold and how framing relates to stigma and wellbeing.

There are different ways to think about disability. In the medical model, the problem is inside the person. Doctors' guidebooks list autism as a disorder, with differences in how people communicate and act.3 The social model started with disabled people in Britain in 1976. It says disability comes from a world that does not make room for disabled people.4 Some scholars say the neurodiversity idea fits well with the social model.3 Others say the social model now accepts that the world is not the whole story.5

Full entryModels of disability A model of disability is a way of explaining what disability is. This page looks at the main models, where they came from, and what studies say about how autistic people see them.
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Hypothesis

Summarizes Models of disability. Models are frameworks, not findings. The manuals' wording and the social model's 1976 origin are facts about documents; how the social model applies to autism is argued in reviews and theory papers, not tested. In the studies the full entry reviews, none compared a social-model and a medical-model framing and measured the effect on autistic people's wellbeing.

Hypothesis

A model is a way of looking at disability. It is not a test result. Nobody has tested which way of looking helps autistic people most.

Language and labels Established

A 2025 systematic review of 19 online studies with 6,350 participants found that in 10 of the 14 studies that asked for a preferred term, more autistic participants chose identity-first language ("autistic person") than person-first language ("person with autism").6 Between 4 and 39% still preferred person-first, the two studies that found the reverse were both Dutch, and the authors concluded there is no consensus, across languages or always within them.6 In a survey of 516 autistic people, mostly from the UK and US, 74% of the 510 who answered said functioning labels should not be used and 13% said they should; views on language went with how connected respondents felt to the autistic community, so samples recruited through community channels may show more rejection.7

Full entryLanguage and labels What research shows about the words used for autistic people: identity-first and person-first language, the push against ableist wording in research, functioning labels and support levels, and the retirement of Asperger's syndrome. Most preference surveys are online samples of speaking adults, with few people with intellectual disability.

Some people say "autistic person". Others say "person with autism". A big review looked at many surveys of autistic adults. In most of them, more people chose "autistic person".6 Some still chose "person with autism". In two Dutch surveys, more people chose it. So not everyone agrees.6 Some labels sort autistic people as "high-functioning" or "low-functioning". In one survey, about 3 in 4 autistic people said not to use these labels.7

Full entryLanguage and labels The words people use for autism, and what research says about them. It covers "autistic person" and "person with autism", fairer words in science, labels like "high-functioning", and why "Asperger's" was dropped.
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Established

Summarizes Language and labels. A systematic review and several independent surveys agree that in most English- and French-language surveys more autistic adults choose identity-first terms, with a large minority choosing otherwise; two Dutch-language surveys go the other way. Two independent surveys agree that most respondents reject functioning labels. All were online, mostly of speaking adults, with few people with intellectual disability.

Word
Functioning labels

Terms such as "high-functioning" and "low-functioning". "High-functioning" usually meant an autistic person without intellectual disability.

Established

Many surveys agree on this, mostly of adults who speak and answered online. The answers were different in Dutch.

Ableism Emerging

The disability scholar Fiona Kumari Campbell names the chief feature of ableism as the belief that impairment or disability "is inherently negative" and should be "ameliorated, cured or indeed eliminated".8 People who know more about autism report less stigma toward autistic people, or more favorable attitudes, in studies from several countries.9,10,11,12,13 People who have had more, or more pleasant, contact with autistic people report less stigma too.9,10,11,13 In an online survey of 111 autistic adults, everyday discrimination, expecting rejection, internalized stigma and concealing being autistic were associated with poorer wellbeing or more distress after general stress was taken into account, though the results may not extend to autistic people with an intellectual disability or high support needs.14

Full entryAbleism What ableism and neuronormativity mean, what research shows about public stigma toward autistic people and its links to mental health, how stigma is measured, where discrimination shows up, and what has been tried to reduce it. Most of the evidence comes from one-time surveys, often of university students.

Ableism is treating disabled people as less than others. One scholar says its main idea is that disability is always bad and should be fixed or gotten rid of.8 Stigma means unfair, negative views about a group. People who know more about autism tend to show less stigma toward autistic people.9,10,11,12,13 So do people who have spent more time with autistic people.9,10,11,13 In one survey, autistic adults who faced more unfair treatment tended to have worse mental health.14 This may not be true for every autistic person.14

Full entryAbleism Ableism means treating disabled people as less than others. This page looks at what people think about autistic people, how unfair treatment may affect them, and what helps change minds. Most studies asked people questions only once.
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Emerging

Summarizes Ableism. The definition is a scholar's, quoted from a dated publication. The link between knowledge, contact and lower stigma is consistent across surveys in several countries, but each measured attitudes once, mostly in university students, so which way the links run is not known. The minority stress finding comes from a one-time online survey of self-selected adults, which cannot show that stigma causes poorer mental health.

Word
Stigma

Negative beliefs, feelings and avoidance aimed at a group.

Emerging

Many surveys agree, but each asked people only once. So we cannot tell what causes what.

Self-advocacy Emerging

A framework from special education, built from a literature review and input from stakeholders, splits personal self-advocacy into four parts: knowing yourself, knowing your rights, communicating, and leadership.15 The slogan "Nothing about us without us", which a 2025 article places in the South African disability movement of the 1990s, is the tagline of the Autistic Self Advocacy Network (ASAN).16,17 Asked what research should study, autistic adults in a UK survey of 1,517 people most often chose public services (61%), life skills (43%) and what the future holds for autistic adults (39%) as their top priorities, though the survey under-represents autistic people who cannot advocate for themselves.18 Of almost £21 million spent on autism research in the UK in 2007 to 2011, 56% went to biology, brain and cognition and 5% to services.18

Full entrySelf-advocacy What self-advocacy means for one person and for a movement, where the slogan "Nothing about us without us" came from, the organizations autistic people run, what autistic people want research to study, and what is known about participatory research and about learning self-advocacy skills.

Self-advocacy means speaking up for what you need. One plan splits it into four parts. These are knowing yourself, knowing your rights, talking with others, and leading.15 One autistic group, ASAN, uses the saying "Nothing about us without us". It may have started in South Africa in the 1990s.16,17 In a UK survey, autistic adults most wanted research on services and life skills.18 But from 2007 to 2011, most UK research money went to studying the body and brain.18

Full entrySelf-advocacy Self-advocacy means speaking up for yourself, and autistic people speaking up together. This page covers where a famous slogan came from, the groups autistic people run, what they want scientists to study, and what research says about working together and learning to speak up.
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Emerging

Summarizes Self-advocacy. The four-part framework comes from one conceptual paper built for students with disabilities. Where the slogan began is an attribution in secondary sources. The priorities and funding figures come from one UK study of a self-selected sample; surveys by other groups in the US and Scotland found the same pattern of applied topics ranked above causes.

Emerging

The four parts come from one paper. The research numbers come mostly from one study in the UK.

Autistic community Emerging

Autism Network International, which a history of the movement calls its first organization, was founded in February 1992 and began as a pen-pal program and a newsletter, Our Voice.19,20 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.21 In the largest single study, of 1,443 autistic adults from the Netherlands Autism Register, all the links were small, and solidarity with other autistic people went with neither anxiety nor depression.22 A systematic review of 15 articles on 12 peer support 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.23

Full entryAutistic community Where the autistic community came from, what research shows about autistic identity, belonging, peer support and online spaces, who is left out, and how autistic writers describe finding their people.

A history of the autistic movement calls Autism Network International its first group. It started in 1992 with pen pals and a newsletter.19,20 Autistic people who feel good about being autistic tend to feel better and less low.21 In the biggest study, these links were small.22 A review looked at 12 programs where autistic people help each other. All of them said people got something good from it. But none compared them with people who were not in a program.23

Full entryAutistic community How autistic people started finding each other, and what science says about belonging, support groups and online spaces. It also covers who gets left out, and what autistic writers say about finding their people.
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Emerging

Summarizes Autistic community. The founding date comes from an edited collection of histories. The link between a positive autistic identity and wellbeing is consistent, but every study asked people once, so none shows that identity improves wellbeing, and samples are mostly adults recruited online, without intellectual disability. No trial has tested whether peer support works.

Emerging

Studies asked people only once, so we cannot tell what causes what. Nobody has tested whether help from other autistic people works.

Self-identification and self-diagnosis Emerging

Adults increasingly identify as autistic before or instead of being assessed.32 In a UK Biobank sample, 6,797 of 154,926 people (about 4.4%) reported suspecting they may be autistic without a diagnosis.33 On questionnaires, self-identified and diagnosed adults report similar autistic traits: in a US online sample of 147 self-identifying and 115 diagnosed adults, more than 93% of both groups scored above the cut-off of a short screening questionnaire, though the self-identifying group was more often cisgender women and more often had unmet support needs, and most (68.7%) wanted a formal diagnosis but described barriers to getting one.34 Fear of not being believed by professionals was the most common and most severe barrier in a survey of 665 adults diagnosed or self-identified in adulthood.35 Online, of the most-viewed informational TikTok videos on autism in one study, 27% were rated accurate, 41% inaccurate and 32% overgeneralised,36 and a countermovement that treats self-diagnosis as "faking" is documented in an analysis of more than 850,000 posts in one Reddit community.37

Full entrySelf-identification and self-diagnosis Some adults conclude they are autistic without ever being assessed. This entry covers how many do (no representative count exists), how self-identification compares with a clinical assessment, the barriers and the disbelief, and the online diagnosis culture and its critics.

Some adults decide they are autistic before, or instead of, being tested. In one big UK study, about 4 in 100 people thought they might be autistic. They had no diagnosis.33 On questionnaires, people who identify themselves look much like people who were diagnosed. In one study, more than 9 in 10 of both groups scored above the line on a short test.34 Many still want a formal diagnosis but find it hard to get one. Fear that a doctor will not believe them is the biggest barrier.35 Online, some autism videos are accurate and many are not. In one study, 4 in 10 were wrong and 3 in 10 were too general.36 Some people online call self-diagnosis "faking". One study looked at more than 850,000 posts about that.37

Full entrySelf-identification and self-diagnosis Some adults decide they are autistic without a doctor's test. This is called self-identification. Here is what scientists know, what they do not know yet, and what autistic writers say about it.
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Emerging

Summarizes Self-identification and self-diagnosis. The studies are cross-sectional surveys, small qualitative work and content analyses, most recruited online, so the entry labels every section emerging. No study found as of October 2026 has clinically assessed self-identified adults, or measured self-identification in a representative sample.

Emerging

Most of these studies asked people online, once. Nobody has checked people who self-identify with a doctor.

Media and public perception Established

Media coverage of autism has a consistent tilt. In a UK newspaper corpus, sampled passages framed autism as deficit or disorder 33.7% of the time, as disability or vulnerability 34.7%, and as violent action 14.3%, and stories about children outnumbered those about adults about nine to one,24 while a participatory re-analysis of 1,000 ranked press quotes found most scored low on warmth and competence, with person-linked and identity-first language scoring higher.25 The same skew appears in China, the United States and Poland.26,27,28 Reading habits go with attitudes: in a survey of 277 UK adults, newspaper factors were associated with about 4.5% of the variance in explicit attitudes and about 11% of implicit attitudes, and readers who trusted right-leaning tabloids showed more negative automatic attitudes.29 On short videos the picture is mixed: analyses of TikTok and Instagram found misleading statistics the most common form of misinformation,30 and among the 100 most-watched autism videos 97% of views went to entertainment content.31 In a French sample of 277 adults, greater knowledge and closer familiarity went with lower explicit stigma, and only close familiarity with lower implicit bias.13

Full entryMedia and public perception How autism appears in newspapers and short videos, what people search for over time within media categories, and how stigma shifts with familiarity. The press picture leans negative and centers on children, and much short-video content does not map onto the diagnostic criteria.

Newspapers often describe autism as a problem or a disorder. In one UK study, about 1 in 3 passages did that. Stories about children were about nine times more common than stories about adults.24 Studies in China, the United States and Poland found the same thing.26,27,28 What people read goes with what they think. People who trusted some newspapers had more negative views.29 On TikTok and Instagram, misleading numbers were common.30 People who knew more about autism showed less stigma.13

Full entryMedia and public perception How autism shows up in newspapers, short videos and searches online, and how knowing an autistic person changes how people feel about autism.
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Established

Summarizes Media and public perception. Content analyses of newspapers in four countries agree that coverage tilts toward deficit, disorder and children, and a survey links reading habits to attitudes. The short-video and search-interest material is smaller and mostly descriptive; the entry labels those sections emerging.

Established

Studies in four countries agree that newspapers often show autism in a bad light. The parts about videos and searches come from smaller studies.

Sources

Research

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  2. 2Botha M, Chapman R, Giwa Onaiwu M, Kapp SK, Stannard Ashley A, Walker N. The neurodiversity concept was developed collectively: An overdue correction on the origins of neurodiversity theory. Autism, 2024. https://doi.org/10.1177/13623613241237871
  3. 3Pellicano E, den Houting J. Annual Research Review: Shifting from 'normal science' to neurodiversity in autism science. Journal of Child Psychology and Psychiatry, 2022. https://doi.org/10.1111/jcpp.13534
  4. 4Union of the Physically Impaired Against Segregation, The Disability Alliance. Fundamental Principles of Disability. UPIAS, 1976. https://disabledpeoplesarchive.com/wp-content/uploads/sites/39/2021/01/001-FundamentalPrinciplesOfDisability-UPIAS-DA-22Nov1975.pdf
  5. 5Bottema-Beutel K, Kapp SK, Lester JN, et al. Avoiding Ableist Language: Suggestions for Autism Researchers. Autism in Adulthood, 2021. https://doi.org/10.1089/aut.2020.0014
  6. 6Schuck RK, Chetcuti L, Dwyer P, et al. Preferences for Identity-First and Person-First Language: A Systematic Review of Research With Autistic Adults/Adults With Autism. Journal of Autism and Developmental Disorders, 2025. https://doi.org/10.1007/s10803-025-07174-3
  7. 7Keates N, Martin F, Waldock KE. Autistic People's Perspectives on Functioning Labels and Associated Reasons, and Community Connectedness. Journal of Autism and Developmental Disorders, 2025. https://doi.org/10.1007/s10803-024-06316-3
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  14. 14Botha M, Frost DM. Extending the Minority Stress Model to Understand Mental Health Problems Experienced by the Autistic Population. Society and Mental Health, 2020. https://doi.org/10.1177/2156869318804297
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  16. 16Bowers Du Toit N. »Nothing about us without us«. Berliner Theologische Zeitschrift, 2025. https://doi.org/10.1515/bthz-2025-0007
  17. 17Autistic Self Advocacy Network. About ASAN. ASAN. https://autisticadvocacy.org/about-asan/
  18. 18Pellicano E, Dinsmore A, Charman T. What should autism research focus upon? Community views and priorities from the United Kingdom. Autism, 2014. https://doi.org/10.1177/1362361314529627
  19. 19Pripas-Kapit S. Historicizing Jim Sinclair's "Don't Mourn for Us": A Cultural and Intellectual History of Neurodiversity's First Manifesto. In: Kapp SK, ed. Autistic Community and the Neurodiversity Movement. Palgrave Macmillan, 2020. https://doi.org/10.1007/978-981-13-8437-0_2
  20. 20Kapp SK. Introduction. In: Kapp SK, ed. Autistic Community and the Neurodiversity Movement. Palgrave Macmillan, 2020. https://doi.org/10.1007/978-981-13-8437-0_1
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  22. 22Krijnen LJ, Rippe RCA, Begeer S, et al. Assessing Social Identity in Autistic Individuals: Evaluating A Self-Report Questionnaire in the Netherlands. Autism, 2026. https://doi.org/10.1177/13623613261431269
  23. 23Verkooijen MH, Ketelaar M, van Woerden M, et al. Impact of peer-support programs for individuals with autism: A systematic review. Autism, 2026. https://doi.org/10.1177/13623613251374971
  24. 24Karaminis T, Gabrielatos C, Maden-Weinberger U, Beattie G. Portrayals of autism in the British press: A corpus-based study. Autism, 2023. https://doi.org/10.1177/13623613221131752
  25. 25Karaminis T, Botha M, Longley S, et al. Language Matters in British Newspapers: A Participatory Analysis of the Autism UK Press Corpus. Autism in Adulthood, 2025. https://doi.org/10.1089/aut.2023.0105
  26. 26Tang L, Bie B. The stigma of autism in China: an analysis of newspaper portrayals of autism between 2003 and 2012. Health Communication, 2016. https://doi.org/10.1080/10410236.2014.965381
  27. 27Wendorf Muhamad J, Yang F. Framing Autism: A Content Analysis of Five Major News Frames in U.S.-Based Newspapers. Journal of Health Communication, 2017. https://doi.org/10.1080/10810730.2016.1256453
  28. 28Wodziński M, Kamińska N, Moskalewicz M. The image of autism in the Polish press 2009–2020 and the role of first-person testimonies. BMC Psychiatry, 2025. https://doi.org/10.1186/s12888-024-06374-y
  29. 29Dickinson M, Karaminis T. The relationship between newspaper reading preferences and attitudes towards autism. Autism, 2026. https://doi.org/10.1177/13623613251394523
  30. 30Ononuju UA, Ujari CA. Stigma and Misinformation About Autism Spectrum Disorder (ASD) on TikTok and Instagram: Content Analysis Using #ASD, #Autism and #ASDinfo. Journal of Autism and Developmental Disorders, 2025. https://doi.org/10.1007/s10803-025-07057-7
  31. 31Steiner-Hofbauer V, Pintér YA, Mittmann G. Comparing the portrayal of #autism and #neurodiversity on TikTok: creators, content, and representation. Wiener Medizinische Wochenschrift, 2025. https://doi.org/10.1007/s10354-025-01076-w
  32. 32Overton GL, Marsà-Sambola F, Martin R, Cavenagh P. Understanding the Self-identification of Autism in Adults: a Scoping Review. Review Journal of Autism and Developmental Disorders, 2024. https://doi.org/10.1007/s40489-023-00361-x
  33. 33Alhadeff A, Zhao Y, Perry L, et al. Adults who suspect they may be autistic or have ADHD show corresponding neurodevelopmental polygenic effects. Preprint (not peer reviewed), 2026. https://www.medrxiv.org/content/10.64898/2026.08.03.26359559v1
  34. 34Ahuvia IL, Gurbuz E, Cuda J, et al. Identifying as Autistic Without a Formal Diagnosis: Who Self-Identifies as Autistic and Why? Autism in Adulthood, 2026. https://doi.org/10.1177/25739581251409920
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Community sources

  1. c1Walker N. Neurodiversity: Some Basic Terms & Definitions. Neuroqueer, 2014. https://neuroqueer.com/neurodiversity-terms-and-definitions/ Nick Walker's site
  2. c2Blume H. Neurodiversity. The Atlantic, 1998. https://www.theatlantic.com/magazine/archive/1998/09/neurodiversity/305909/
  3. c3Silberman S. NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. Avery, 2015. Chapter 11, "In Autistic Space". Steve Silberman's site
  4. c4Price D. Unmasking Autism: Discovering the New Faces of Neurodiversity. Harmony Books, 2022. Chapter 1, "What Is Autism, Really?", section "Defining Autism". Devon Price's site
  5. c5Singer J. A factual response to Martijn Dekker's claims. NeuroDiversity 2.0 (blog), 2023. https://neurodiversity2.blogspot.com/2023/10/a-factual-response-to-martijn-dekkers.html Judy Singer's site