Development of stigma-related support for autistic adults: Insights from the autism community

The study addresses stigma related to autism as a multi-level social phenomenon. Public stigma involves labelling and stereotyping that lead to discrimination and status loss, while internalised stigma occurs when individuals become aware of, agree with, and apply public stereotypes to themselves, harming self-esteem and self-efficacy. Autistic adults commonly perceive, anticipate, and experience stigma, with both public and internalised stigma linked to poorer mental health. Autistic adults often face a “double bind” around disclosure versus concealment, as both can negatively affect wellbeing. While societal change is essential to address public stigma, there is a gap in targeted support to help autistic adults manage internalised stigma and disclosure decisions. Building on interventions from mental health and intellectual disability fields (e.g., HOP and STORM), the study aimed to consult the autism community on whether a stigma-related support intervention for autistic adults is needed and, if so, what its content and delivery should be.

Prior work shows that educational interventions can increase knowledge about autism but produce smaller changes in stigma, while combining education with quality contact can improve attitudes, although durability and real-world transfer are unclear. In mental health, several internalised-stigma interventions exist (Healthy Self-Concept, Self-Stigma Reduction, Ending Self-Stigma, Narrative Enhancement and Cognitive Therapy, Honest Open Proud [HOP], Photo-Voice), often using psychoeducation, cognitive reframing, and narrative approaches. HOP uniquely focuses on disclosure decision-making via peer-led sessions, with meta-analytic evidence showing benefits for stigma stress and smaller effects for self-stigma and depression. Within disability, adaptations have been piloted: HOP for people with dementia showed feasibility and acceptability in some contexts; STORM was developed for adults with intellectual disabilities to manage and resist stigma through group sessions focused on experiences, planning responses, and self-advocacy. Evidence suggests potential relevance but uncertainty about direct applicability to autistic adults. Autistic self-advocacy and neurodiversity movements highlight the need for strengths-based, empowerment-focused supports. The Medical Research Council guidance emphasizes stakeholder engagement in developing complex interventions, underscoring the priority to center autistic adults’ perspectives and also consider caregiver insights.

Design: Mixed-methods online consultation survey comprising multiple-choice and open-ended questions, conducted to assess need for, and design of, a stigma-related support programme for autistic adults. Materials: Survey included (1) respondent role (autistic person, parent/caregiver, or both); for autistic adults, diagnostic status and degree of openness about diagnosis/identity; (2) demographics (gender, age, ethnicity) and rating of importance of stigma-related support; (3) brief video describing HOP and STORM to inform opinions on suitability and adaptations; (4) preferences for delivery format (small group, one-to-one, guided self-help; online, in-person, or both), facilitators and barriers to participation. Materials were co-developed with autistic team members to improve accessibility (survey preview in information sheet, video transcript) and to clarify rationale (supporting autistic people in parallel with efforts to reduce public stigma). Procedure: Ethical approval obtained from IOE, UCL’s Faculty of Education and Society. Survey hosted on Qualtrics and disseminated via the Cambridge Autism Research Database (CARD). Participants provided informed consent. Data collection: November–December 2021. Participants: 208 consented; 64 partial responders excluded; final sample n=144 complete responders (autistic adults and parents/caregivers) residing in the UK. Sample characteristics (selected): majority autistic adults; most with formal autism diagnosis; varied degrees of openness; gender identities included men, women, and non-binary/other; predominantly White-British ethnicity. Analysis: Quantitative data summarized descriptively. Qualitative data analyzed using reflexive thematic analysis (Braun & Clarke). The primary analyst (non-autistic) adopted a neurodiversity-affirming, social model orientation, reflected on positionality, and followed published TA quality criteria. Themes were developed across the entire dataset; quotes were collated to evidence claims. Autistic team members contributed to materials development and reviewed findings to inform interpretation.

Quantitative: - Importance of support: 79% (n=114) endorsed that it is important for autistic adults to have support to manage stigma (52% definitely yes; 27% probably yes). 17% were unsure (may or may not), and 4% indicated probably/definitely not. - Programme suitability (after HOP and STORM descriptions): 44% thought either programme could be adapted; 25% felt HOP more suitable; 16% STORM more suitable; 15% neither suitable. - Preferred delivery method: 32% preferred small group with trained facilitator; 18% one-to-one with trained facilitator; 13% guided self-help; 37% “other,” commonly advocating offering multiple options or combinations. - If small group: 20% preferred online; 22% in-person; 58% mixed delivery. - Facilitators to participation: clear, detailed pre-information (83%); online with flexible participation (70%); trained autistic facilitator (52%); caregiver/family involvement (41%); other (29%) included more processing time, visual content, highly structured logical format, coordination with local autism support groups. - Barriers to participation: travel and sensory environment (77%); uncertainty about programme content (75%); not feeling comfortable/ready to discuss diagnosis (64%); not wanting to be in a group with other autistic people (51%); shame/embarrassment (41%); not needing help (38%); other (32%) included not recognizing stigma, doubts about utility, communication/emotional difficulties, social anxiety, group/tech challenges, privacy/time constraints, pandemic safety. Qualitative themes: 1) “We need to change society not autistic people”: Emphasis that stigma is a societal problem; primary onus on non-autistic people. Public understanding of autism is limited and stereotype-driven; advocates for education of wider society; some oppose a stigma-support programme for autistic people, others endorse parallel efforts for societal change and individual empowerment. 2) “Stigma is difficult to manage alone”: Stigma harms mental health and self-worth; need to prevent internalised stigma. Disclosure is complex—who to tell, how, and when. Masking is common and linked to distress; interest in support for unmasking. 3) “Focus on positive, practical support”: Avoid reinforcing victimhood; centre empowerment. Build self-understanding and acceptance grounded in neurodiversity/social models; highlight strengths with balanced discussion of needs. Provide context-specific strategies (e.g., employment, legal rights, scripts, role-play) for responding to stigma and managing disclosure. 4) “There is no one size fits all approach”: Autistic heterogeneity necessitates flexible, individualized options. Consider wide range of intellectual/communication abilities, varying awareness of stigma, differing diagnosis timelines, and community involvement. Group settings can be valuable for some, but a major barrier for others; recommendations include small, matched groups and accessible online options with variable participation levels.

Findings indicate strong support among participants for stigma-related support for autistic adults, driven by the recognized negative mental health impact of stigma and challenges around disclosure. However, respondents cautioned that interventions must not shift responsibility to autistic individuals or imply stigma is normal or acceptable; rather, they should occur alongside societal-level efforts to reduce public stigma. A disclosure-focused approach akin to HOP may be more acceptable than a programme focusing directly on stigma resistance (like STORM), as it can empower strategic, context-sensitive disclosure, potentially reduce internalised stigma, and promote positive group identification while not requiring disclosure for all. Delivery preferences underscore the importance of flexibility: many value peer connection, yet a substantial proportion find group contexts inaccessible or aversive, particularly for sensitive identity topics. Hybrid models (e.g., guided self-help with optional peer forums or small groups) and online modalities may widen accessibility and better accommodate sensory, social, and logistical needs. The study supports developing empowerment- and acceptance-focused programmes within a broader, multi-level stigma-reduction framework.

The study contributes stakeholder-informed guidance for designing stigma-related support for autistic adults. Most respondents endorsed the need for support, emphasizing content that fosters self-understanding, self-acceptance, empowerment, and context-specific strategies for disclosure and responding to stigma. Programmes should be framed to avoid reinforcing deficit narratives or individualizing responsibility for stigma, and should be pursued alongside societal interventions to reduce public stigma. Flexible delivery—offering one-to-one, small-group, and guided self-help options, with online and mixed modes—appears essential to accommodate heterogeneous needs and preferences. Future research should co-produce and evaluate autism-specific adaptations of disclosure-focused interventions (e.g., an autism-tailored HOP), examine feasibility and acceptability of hybrid formats (including online peer forums), assess short- and long-term outcomes (e.g., stigma stress, internalised stigma, wellbeing), and address intersectionality by including diverse autistic populations.

Key limitations include limited attention to intersectionality and a predominantly White sample; the study did not collect detailed demographics (e.g., sexuality, socioeconomic status, co-occurring disabilities), restricting analysis of intersecting identities. Recruitment via a single source (CARD) may limit representativeness of the wider UK autism community, especially given contemporaneous controversies related to ARC/CARD. Preferences reported may reflect self-selection and may differ between autistic adults and parents/caregivers. Group-based delivery findings may underrepresent individuals most reluctant to engage in groups. Finally, qualitative analysis was led by a single (non-autistic) researcher within a reflexive TA framework; while trustworthiness strategies were applied, findings reflect the researchers’ positionality.