What are the autism research priorities of autistic adults in Scotland?

Cage, Eilidh; Crompton, Catherine J.; Dantas, Sarah; Strachan, Khiah; Birch, Rachel; Robinson, M. S.; Morgan-Appel, Stasa; MacKenzie-Nash, Charlie; Gallagher, Aaron; Botha, Monique

doi:10.31234/osf.io/nbq8h

“…Similarly, this is a context situated study (as is the aim of photovoice studies), meaning a potential lack of transferability of many aspects of the study outside the UK-based diagnostic pathways. We know that applied research on topics which relate to the everyday lives of autistic people are a priority for autistic people (including diagnosis; (Cage et al, 2022), and yet these topics are funded less often than basic science (such as genetics, neuroscience) (den Houting & Pellicano, 2019;Roche et al, 2021). We hope that our study helps inform future research and funding on this topic, with a particular focus on intersectional barriers to diagnosis, and how to make the process a more respectful and collaborative experience.…”

Section: Strengths and Limitationsmentioning

confidence: 96%

Diagnosis as a new beginning not an end: A participatory photovoice study on navigating an autism diagnosis in adulthood

Cage,

Botha,

McDevitt

et al. 2024

Autism

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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. Lay abstract 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.

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“…As these efforts continue, it remains incumbent on biomarker researchers to articulate how biomarkers will improve identification and clinical care, as biomarker testing is often more labor-intensive, more invasive, and less accessible to people in need than established methods. Further, biomarker researchers should address concerns from the autistic community about the underlying motivation for biological research funding [e.g., cure and prevent autism; (39)], which often comes at the expense of other funding and research needs prioritized by autistic people (40)(41)(42)(43)(44)(45)(46).…”

Section: Biomarkersmentioning

confidence: 99%

Anti-ableism and scientific accuracy in autism research: a false dichotomy

Bottema-Beutel,

Kapp,

Sasson

et al. 2023

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It was recently argued that autism researchers committed to rejecting ableist frameworks in their research may sacrifice “scientifically accurate” conceptualizations of autism. In this perspective piece, we argue that: (a) anti-ableism vs. scientific accuracy is a false dichotomy, (b) there is no ideology-free science that has claim to scientific accuracy, and (c) autism science has a history of false leads in part because of unexamined ableist ideologies that undergird researcher framings and interpretations of evidence. To illustrate our claims, we discuss several avenues of autism research that were promoted as scientific advances, but were eventually debunked or shown to have much less explanatory value than initially proposed. These research programs have involved claims about autism etiology, the nature of autism and autistic characteristics, and autism intervention. Common to these false leads have been ableist assumptions about autism that inform researcher perspectives. Negative impacts of this work have been mitigated in some areas of autism research, but these perspectives continue to exert influence on the lives of autistic people, including the availability of services, discourses about autism, and sociocultural conceptualizations of autistic people. Examining these false leads may help current researchers better understand how ableism may negatively influence their areas of inquiry. We close with a positive argument that promoting anti-ableism can be done in tandem with increasing scientific accuracy.

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“…Lack of funding for participatory autism research is a systemic barrier preventing autism researchers being able to engage fully in such practices (den Houting et al, 2021;Pickard et al, 2021). We know that applied research on topics which relate to the everyday lives of autistic people are a priority for autistic people (including diagnosis; Cage et al, 2022), and yet these topics are funded less often than basic science (such as genetics, neuroscience) (den Houting & Pellicano, 2019;Roche et al, 2021). We hope that our study helps inform future research and funding on this topic.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

Diagnosis as a new beginning not an end: A participatory photovoice study on navigating an autism diagnosis in adulthood

Cage¹,

Botha²,

McDevitt³

et al. 2022

Preprint

0

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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 people 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: “everything shattered”, “being seen”, “understanding not judgement, please” and “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 groups to listen more to autistic people, and for diagnostic support services to be flexible and appreciative of wider neurodivergence and intersectionality.

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What are the autism research priorities of autistic adults in Scotland?

Cited by 5 publications

References 28 publications

Diagnosis as a new beginning not an end: A participatory photovoice study on navigating an autism diagnosis in adulthood

Diagnosis as a new beginning not an end: A participatory photovoice study on navigating an autism diagnosis in adulthood

Anti-ableism and scientific accuracy in autism research: a false dichotomy

Diagnosis as a new beginning not an end: A participatory photovoice study on navigating an autism diagnosis in adulthood

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