Self-advocacy

Self-advocacy has two meanings that run side by side. For one person, it means speaking up for their own needs: asking for a quieter room, a written instruction or a change at work. For a group, it means disabled people organizing to speak for themselves in policy and public life, in place of parents or professionals speaking for them.

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.¹ The definition is still loose. A 2019 review of self-advocacy groups for people with intellectual disability opens by noting that there is no single agreed definition.²

The group meaning is older than the autistic movement. People with intellectual disability began organizing as self-advocates internationally in the 1970s.³ Two reviews, which probably share some of the same studies, link membership of their self-advocacy groups with empowerment, confidence and a sense of belonging; the authors of the first note a lack of quantitative studies, and the second found some negative effects but judged that the benefits outweigh them.^2,4 In a study of 43 self-advocates and advocates in the UK and Hungary, including autistic self-advocates, most of the day-to-day work was informing people, using the media, supporting each other and handling paperwork, more than speaking up in public. The same study found that hierarchies in the disability movement strongly shaped self-advocates' position.⁵

"Nothing about us without us" is the disability rights movement's demand that decisions about disabled people include disabled people. James Charlton's 1998 book of that title, from the University of California Press, reads the slogan as the movement's demand for control over its own affairs.⁶ A 2018 book review credits Charlton with making the phrase popular and two South African activists, Michael Masutha and William Rowland, with coining it.⁷ A 2025 article places its origin in the South African disability movement of the 1990s.⁸

The United Nations made "Nothing about Us, Without Us" the theme of the International Day of Disabled Persons in 2004, pointing to disabled people's part in drafting a disability rights convention.⁹ The Convention on the Rights of Persons with Disabilities was adopted on 13 December 2006.¹⁰ Disability organizations used the slogan to win a participatory role throughout its drafting.¹¹ The Autistic Self Advocacy Network (ASAN) uses it as its tagline.¹²

Autistic people began organizing for themselves in the early 1990s. In 1992 Jim Sinclair, Donna Williams and Xenia Grant decided to start their own organization, Autism Network International (ANI), rather than depend on organizations run by non-autistic people.^13,15 The first issue of its newsletter, Our Voice, came out in November 1992.¹³ In July 1993 Sinclair presented "Don't Mourn for Us" at the International Conference on Autism in Toronto, a talk addressed to parents grieving a diagnosis; it appeared in Our Voice the same year.^13,14 A historian calls it neurodiversity's first manifesto.¹⁵ ANI started an email list in 1994 and held the first Autreat, a retreat run by autistic people, in August 1996, with about fifty people.¹³ Autscape, a UK event run on the same lines and co-founded by Karen Leneh Buckle, began in 2005.¹⁶

ASAN was founded in 2006 by Ari Ne'eman and Scott Michael Robertson; Ne'eman led it as executive director until 2016.^17,18 It became widely known in December 2007, when a letter-writing protest got a New York University advertising campaign, the "Ransom Notes" billboards, taken down.¹⁷ Sharon daVanport founded the Autism Women's Network in 2009.¹⁹ It took the name Autistic Women & Nonbinary Network on 1 July 2018 and kept the initials AWN.²⁰ In the UK, Autistic UK, led by autistic people, drew its inspiration from the Autistic Rights Movement UK, founded in 2005, and became a voluntary organization in 2009.²³

Scholars place these groups in the line of the disability movements. A 2008 study of autism social movements describes international autistic-led groups as sometimes reproaching parents' associations for speaking on their behalf, and suggests their action can be seen as the latest generation of disability movements.²⁴ A 2021 article notes that the movement's earliest demand, in Sinclair's 1993 talk, was that autism be recognized as an essential part of the person.^25,14

Autistic adults who answered these surveys put research on daily life ahead of research on causes, and so did the mixed groups of families, practitioners and researchers surveyed alongside them. The first large study, in the UK, surveyed 1,517 people (122 autistic adults, 849 family members, 426 practitioners and 120 researchers) and held focus groups and interviews with 72 more.²⁶ Autistic adults most often chose public services (61%), life skills (43%) and what the future holds for autistic adults (39%) as their top priorities. Every group, researchers included, put life skills and services among its top three.²⁶

Studies elsewhere found the same pattern. A US online study that repeated the UK questions with 102 autistic adults and the guardians of 60 more found understanding and acceptance, life skills and mental health rated highest; the self-reporting adults in this registry were mostly women and mostly diagnosed in adulthood.²⁷ An online survey of 6,004 people of all kinds, 79% of them women and 86% in the US, preferred applied research over basic research while rating both important; co-occurring conditions, health and wellbeing, the move to adulthood and lifespan issues came top.²⁸ Its authors worked at Autism Speaks and Duke University.²⁸ A systematic review of seven priority studies, most of them of mixed groups, found shared themes: research that changes daily life, more research across the lifespan, and skills training.²⁹ In Scotland, 225 autistic adults put mental health first and ranked genetics and biology, treatments and interventions, and causes last.³⁰ A US project on mental-health research, involving 377 people, 79% of them autistic adults, set five priorities: trauma-informed care, inclusion and acceptance, self-management, the harms of existing interventions, and better measures of quality of life.³¹ In its survey, 136 respondents most often said quality of life (95.6%) and anxiety (89.7%) mattered to them as outcomes, and 72.8% said they would not take part in applied behavior analysis as an intervention.³¹

Priorities differ between groups. In the UK study, family members rated research on treating "core symptoms" higher than autistic adults did (4.53 against 3.77 out of 5), and research on environmental causes higher too (3.78 against 3.22).²⁶ The samples were self-selected, and the UK authors note that their survey under-represents autistic people who cannot advocate for themselves.^26,27

Funding has gone mostly to biology. 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.²⁶ Shown these figures, the most common answer in every group surveyed was "dissatisfied", and researchers were somewhat more satisfied than autistic adults and families.²⁶ In the US in 2022, the latest year in the federal portfolio report used here, of $456.1 million of autism research funding tracked by the federal Interagency Autism Coordinating Committee (IACC), 41.9% went to biology and 18.5% to genetic and environmental factors, against 7.1% for services and 7.2% for lifespan issues.³² Lifespan research has grown: projects rose from 8 in 2008 to 156 in 2022, and funding rose 942% from its low point in 2013.³² Across 2017 to 2019, the three largest US federal funders put 5.02% into services and 2.51% into lifespan research.³³ At the National Institutes of Health, services research held at about 9% of autism funding from 2008 to 2018.³⁴ In New Zealand, 67% of autism research funding in 2007 to 2021, spread over only 13 grants, went to biology.³⁵

As of October 2026, the federal committee that tracks this money had been reshaped in 2026. On 28 January 2026 the US Department of Health and Human Services appointed 21 new members to the Interagency Autism Coordinating Committee.⁶⁰ In August 2026 the committee adopted a strategic plan that The Transmitter reported de-emphasized genetics and called for more research on environmental factors and the causes of regression.⁶¹ In September 2026 the HHS Secretary replaced its chair.⁶¹ The rest of the overhaul, the objections to it, and the independent committee formed in response are set out in Research ethics and who sets the agenda.

The people in studies are not the whole autistic population. Across 301 autism studies published in 2016 in leading autism journals, 38% did not report participants' intellectual ability; in the 165 that did, an estimated 94% of participants did not have intellectual disability.³⁶ Research on autistic older adults has grown fast but made up about 0.4% of autism studies over a decade.³⁷ Of 1,013 autism intervention studies from 1990 to 2017, only 25% reported participants' race or ethnicity, and in those that did about 64% of participants were White.³⁸ A 2026 report argues that autism research also under-represents racially diverse, multilingual and low-income households, and describes engaging 94 Spanish- and English-speaking Latinx families from low-income households as a model for including them.⁶²

In participatory research, the people a study is about help decide what is studied and how. In community-based participatory research, community members share control with academics at every stage.

AASPIRE, a US partnership founded in 2006, has been co-directed since its founding by an academic physician, Christina Nicolaidis, and an autistic self-advocate, Dora Raymaker.³⁹ Each of its projects has an academic and a community lead, and partners work largely by text chat and email.⁴⁰ Its guidelines ask for clear roles, shared power, fair pay for autistic partners, accessible consent and survey questions adapted with autistic people, and they warn against using autistic partners as tokens.³⁹

In the UK, a seminar series of about 200 autistic and non-autistic people called for greater autistic leadership of, and partnership in, research.⁴¹ Its authors say the recommendations were not derived from data, and that no non-speaking autistic people took part.⁴¹

Support is wide, practice thinner. In an Australian survey of 79 academics and community partners, 82% supported moderate or extensive community engagement, yet answers described partners not working as equals and research systems not built for it.⁴² Researchers interviewed in the UK named lack of time, funding and support as barriers.⁴³ In the journal Autism, 10.3% of articles reported community involvement in 2019 and 54.5% in 2022; a statement on involvement became mandatory in between, in 2021. Of the articles that reported involvement, 17% gave too little detail to classify it, and most involvement was consultation, with researchers keeping most of the decision-making power; and autistic young people were involved in 2% of the 2022 studies that reported involvement.⁴⁴

In a 2026 UK survey on suicide prevention, most of the 2,778 respondents (2,463 of them autistic) rated co-design and co-production as very important, and about nine in ten comments on the topic stressed their value, while a minority warned that co-production can leave out people with higher support needs, people who are non-speaking, or people with an intellectual disability.⁶³ The survey was online and self-selected; its authors note it may not represent the wider autism community.

Whether participation produces better research has barely been tested. A 2014 scoping review found seven participatory studies in autism and other neurodevelopmental conditions. Their designs differed and they reported little about how deeply partners were involved, which limited what could be said about partners' influence.⁴⁵ A 2024 systematic review of 11 autism intervention studies with community partners found that how well partnerships worked, and what they achieved, were reported unevenly. Trust, acceptability and feasibility were reported more often than sustainability or cost.⁴⁶

Single studies give indirect hints. AASPIRE's healthcare toolkit was designed with autistic partners and evaluated by AASPIRE itself, in a project involving 259 autistic adults and 51 primary care providers. After using it, patients reported fewer barriers to care (an average of 4.07 before, 2.82 after) and small rises in confidence in managing their care and in satisfaction with communication. There was no comparison group, so the study shows that a co-designed tool was followed by improvement; it cannot separate the effect of co-design from the effect of the tool.⁴⁷ In a survey of 195 autism researchers, those who reported more participatory practice wrote about autistic people with fewer ableist cues.⁴⁸ That study measured both at one time, so it cannot say whether participation changed how researchers write.⁴⁸

Research on teaching self-advocacy is thin. A 2005 review of 25 intervention studies found early evidence that people of different ages and disabilities can learn self-advocacy skills, and called for more rigorous studies.⁴⁹ An update covering 2004 to 2012 found 18 studies, two of high quality and none of acceptable quality.⁵⁰ A 2021 systematic review of 18 studies on self-determination in autistic students found that it can be promoted through teaching, and also called for more rigor.⁵¹ Two small autism trials tested different programs on different outcomes. In a randomized trial with 59 autistic students, a transition program called STEPS improved readiness for the move after school in secondary students and adjustment to college in college students, each a smaller subgroup.⁵² In a Spanish randomized trial with 40 autistic young adults, a self-determination program made no significant difference compared with a waiting list, though participants and caregivers reported benefits.⁵³

In two cross-sectional surveys, autistic students rated some of these skills lower than students with other disabilities. Among 222 students, autistic students reported less autonomy than students with intellectual disability or learning disabilities.⁵⁴ Autistic college students rated their own self-advocacy lower than students with other disabilities did; the authors call for educating peers and professors and building a welcoming environment, not only for teaching skills.⁵⁵

Speaking up does not always work. Of 181 autistic adults in the UK, 58.6% had asked for adjustments at work; 61.3% of those requests were put in place, a quarter (25.5%) were refused and 13.2% were poorly put in place. Participants felt the onus was on them to know what they needed and to ask.⁵⁶ In an international survey, 80% of 507 autistic adults reported difficulty visiting a family doctor, against 37% of 157 non-autistic adults, and 56% said not feeling understood was a barrier.⁵⁷ In interviews with 12 adults diagnosed in adulthood, some found that advocating after disclosing felt empowering but also a burden, and being disbelieved made many more cautious about disclosing again.⁵⁸

Many autistic writers describe personal self-advocacy as a practical skill. Megan Anna Neff writes: "In essence, self-advocacy involves voicing your needs." Neff sums it up as a disclosure about a need paired with a specific request, adds that full disclosure is not required, and suggests writing short scripts in advance and practicing them.^c1 When a request meets resistance, Neff writes, the reaction often comes from a lack of knowledge about neurodivergence and does not reflect on "your worth or your request's validity".^c1 Devon Price writes that practice builds confidence: "the more often I use my self-advocacy skills, the more in control of myself and my surroundings I feel when I try something new."^c2

Writers also describe the cost. Julia Bascom, who led ASAN after Ne'eman, told Eric Garcia, "There is a huge physical and cognitive cost for the amount of time that I spend using words," and said she can do her job because of "this elaborate scaffold of supports" that others do not see.^c3 Jules Edwards, an autistic parent of autistic children, describes collective advocacy as taking "my seat at the table, across from people who think I'm puzzling, rude, and stealing their child's disability resources", to push for small gains while still pressing for radical change.^c11

On the movement, Garcia reports that ASAN adopted "Nothing about us without us" as its slogan, framing its goals as disability rights. Ne'eman described ASAN's founding to Garcia as "building a sword and shield" for ideas first developed by Sinclair and ANI.^c4 Bianca Toeps titles a chapter with the slogan and argues that there is a great deal of talking about autistic people and very little listening to them.^c5 Steve Silberman, a non-autistic historian of the movement, writes that "Nothing about us, without us" also extends to the process of doing science itself.^c6 Price advises readers looking for a group to choose one run by autistic people, and adds: "Trustworthy organizations will be run by Autistics, and allow for a variety of different methods of participation, so that nonverbal Autistics and those with physical disabilities are centered."^c7 Meghan Ashburn, writing as a parent, says she once "chose to speak over a marginalized group instead of uplifting their own voices", and that parents advocating for their children "should take the lead from the autistic community."^c12

Nonspeaking writers widen what counts as self-advocacy. Mel Baggs, in an essay first posted in 2005 and reprinted in Loud Hands, objects to defining it by formal groups or by the ability to use standard language, which suggests "that only certain kinds of people could ever become self-advocates". When people "said to be incapable of communication find ways of making clear what they do and don't want through means other than words, this is self-advocacy."^c8 Sameer Dahar, who spells and types to communicate, writes: "As I am primarily non-speaking, I am a strong advocate for those who have no voice."^c9 Nicholas D'Amora, who also types and spells, trained his teachers to support his communication and writes that "Self-advocacy paid off once again and now I felt able to start planning my life and what goals I wanted to accomplish."^c10