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Autistic people report greater comfort socialising and easier communication with each other. Despite autism being stereotypically associated with lack of social motivation, an autistic community has been described briefly in the literature but is not well understood. Autistic community connectedness may play a role in promoting wellbeing for autistic people. This qualitative study involved interviewing autistic individuals (N = 20) in-person, via a video-based platform, a text-based platform or over email to investigate autistic community connectedness. Critical grounded theory tools were used to collect and analyse the data. There were three elements of autistic community connectedness: belongingness, social connectedness and political connectedness. Belongingness referred to the sense of similarity that autistic people experienced with each other. Social connectedness referred to specific friendship participants formed with other autistic people. Political connectedness referred to a connectedness to the political or social equality goals of the autistic community. Participants described the benefits of autistic community connectedness as being increased self-esteem, a sense of direction and a sense of community not experienced elsewhere. Lack of connectedness involved ambivalence with an autistic identity and/or feelings of internalised stigma. Experiences of autistic community connectedness may have implications for autistic people's wellbeing, as well as how they cope with minority stress.

Autistic people diagnosed in adulthood often report that the experience can be life-changing, but there are issues with the diagnostic pathway. Few studies consider the views of people currently seeking diagnosis or contextualise the experience of diagnosis around developing an autistic identity. In this qualitative participatory study, we explored experiences of navigating an autism diagnosis in adulthood in the UK. We recruited six women (aged 21–46 years) who were seeking diagnosis, who worked with the academic researchers across four sessions to develop the study, share their experiences and analyse the themes. In one session, they completed a semi-structured interview alongside photovoice, a community-based action method, to explain and reflect on their experiences. We used reflexive thematic analysis to identify patterns, with four key themes identified: (1) ‘everything shattered’, (2) ‘being seen’, (3) ‘understanding not judgement, please’ and (4) ‘here’s a leaflet, off you go’. The themes reflected a desire for change and improved support for both diagnosis and developing autistic identity. Following photovoice methodology, together we identified actions to improve adult diagnosis, including involving autistic people in making improvements to the diagnostic criteria, for key professional and community groups to listen more to autistic people and for diagnostic support services to be flexible and appreciative of wider neurodivergence and intersectionality.Lots of people seek an autism diagnosis as an adult, and they often say that being diagnosed can be positively life-changing, but the experience of getting a diagnosis can be difficult. We often do not hear the views of people currently looking for a diagnosis, or talk to them about how diagnosis relates to their identity. In our study, we looked at experiences of people currently seeking an autism diagnosis in the UK. We used participatory methods, where six people seeking diagnosis were included as collaborators in the research. They took part in four different sessions, where they helped to shape the research, took part in interviews about their experiences and helped to analyse the patterns in all the interviews. We also used something called photovoice during the interviews, where they could use photos to show how they felt about navigating a diagnosis. We identified four common themes: (1) everyone had experienced some form of crisis before seeking diagnosis; (2) when they realised they were autistic, they felt seen; (3) the diagnostic process and criteria were not working, and they felt judged by clinicians and (4) there was limited support available after diagnosis. In another session, we identified actions that need to be taken which have implications for policy and practice, including improving the diagnostic process and criteria with autistic people, autistic people being listened to more by people like general practitioners and clinicians and diagnosis services needing to be more flexible and appreciate different aspects of someone’s identity and neurodivergence. [ABSTRACT FROM AUTHOR]

Studies investigating autistic community research priorities indicate a mismatch between what autism research focuses on and what autistic people want to see researched. Furthermore, there has not been a research priority-setting exercise specifically with autistic people in Scotland, where there are unique cultural, political and social contexts. Using a community-based participatory design, we aimed to identify the research priorities of autistic adults living in Scotland. Autistic and non-autistic researchers designed and conducted a survey where 225 autistic adults rated and ranked research topics in order of importance and provided qualitative feedback on issues and questions important to them. The top five research priorities were mental health/well-being, identification and diagnosis of autistic people, support services, knowledge and attitudes towards autistic people and issues impacting autistic women. There were differences in priorities according to different intersections of identity, and qualitative responses indicated a desire for research to focus on support and understanding. The bottom three priorities concerned genetics, treatments and interventions and causes. These findings emphasise the need to address the gap between what autism research focuses on and the everyday lives of autistic people.Although research has the potential to improve autistic people’s lives, lots of funding goes towards research looking at topics which autistic people say has little impact in their everyday lives. Autistic people’s lives can be different depending on where they live, and Scotland is a unique country in many ways. We wanted to find out which topics autistic people in Scotland want to see research on. Our team of autistic and non-autistic researchers (including university-based and community researchers) created a survey where 225 autistic adults rated and ranked the importance of possible research topics and shared their thoughts on what topics mattered to them. The five most important topics were mental health and well-being, identifying and diagnosing autistic people, support services (including healthcare and social care), non-autistic people’s knowledge and attitudes and issues impacting autistic women. The three least important topics were genetics or biological aspects of autism, autism treatments/interventions and causes of autism. Our findings indicate that autistic people in Scotland want research to focus on things that matter to their day-to-day lives. Also, the Scottish government says they will be listening to autistic people in their latest policy plans, and we believe that considering autistic people’s research priorities is an important part of this. Our findings also add to growing calls for change to happen in how and what autism researchers do research on. [ABSTRACT FROM AUTHOR]