Daniel Poole

Autistic people who are racially minoritised, are from areas of high economic deprivation, have co-occurring learning disabilities, or are non- or minimally-speaking are frequently excluded from autism research. This leaves critical gaps in evidence for service development. We addressed this by developing and evaluating “Participatory Creative Systems Mapping (PCSM)” – an emerging practice that combines Community-Based Participatory Research, Participatory Systems Mapping, and creative methods. The novelty arises from combining these approaches to systemically reduce barriers to underserved autistic communities’ participation and engagement in research.We partnered with disability-focused and community organisations, and an autistic steering group to develop and deliver accessible workshops. These workshops incorporated persona development, user journey mapping, storyboarding, and live artist visualisation to translate underserved autistic peoples’ experiences of primary healthcare into system-level insights. Thirty-one participants (including autistic adults and parents of autistic people) took part across four individual workshops. The participant cohort included representation from Somali and Black African communities (35.5%), areas of high neighbourhood deprivation, and reported a variety of methods for how they usually communicate. Autistic people with learning disabilities were represented, but this was not consistently self-reported by participants. Evaluation indicated high satisfaction, with all respondents who provided feedback about sharing their ideas and experiences reporting that they felt able to do so in the workshops. As proof of concept for PCSM as a method, we successfully produced a causal loop diagram reflected on by the steering group – the "Misalignment-Invalidation Cycle", illustrating how communication barriers and clinician invalidation generate reinforcing loops of misunderstanding and disengagement from healthcare. Finally, we share key methodological lessons for trust-building, flexibility, and accessibility infrastructure. These offer a roadmap for researchers who are seeking to engage underserved autistic people in participatory, system-level inquiry.

Background: Existing research has identified areas of strength and challenge in relation to autistic attention. However, this work has tended to rely on comparisons with neurotypical benchmarks, meaning that how attention is lived and embodied by autistic people has been underexplored. This study addresses this critical gap via the first phenomenological account of how autistic adults experience their attention within everyday contexts. Methods: A total of 13 autistic adults took part in semi-structured interviews. To help participants express their complex and potentially hard to verbalize experiences, we integrated photo-elicitation using researcher-selected photographs as prompts for participants to discuss their attention experiences. Data were analyzed using interpretative phenomenological analysis, which was inductively driven but informed by a Merleau-Pontian framework. Results: Three Group Experiential Themes (GETs) were developed. GET1, Interruption Is Devastating: Participants described their attention as a sequential, deeply engrossed process. Interruptions, especially from other people, were profoundly challenging, often leading to a collapse of their focus and an exhausting state of vigilance. GET2, Interest Engagement as a Sanctuary: Time spent deeply focused on interests was described as a sanctuary, providing both joy and replenishment of cognitive resources depleted through navigating inaccessible environments. GET3, Attentional Normativity: This exposed the friction between participants’ attentional style and entrenched normative expectations about how attention “should” function, which particularly impacted their experiences in the workplace. Conclusion: This work provides novel insights into the phenomenology of autistic attention. We highlight elements across themes that support the monotropism theory of attention within a lived and embodied subjectivity. We discuss the importance of challenging normative expectations of attention for creating neuroinclusive environments, particularly in the workplace.

Open data has been promoted as a tool to improve the transparency, robustness, and efficiency of scientific research. However, the perspectives of participant communities, particularly those who are marginalised, are often overlooked in discussions around open data. This paper examines, for the first time, the views of autistic adults and parents of autistic people regarding open data practices in autism research. Thirty interviews were conducted, which considered participants’ views on different degrees of openness of research data, and the factors that would influence their level of comfort with their and/or their child’s data being shared. Pre-registered reflexive thematic analysis that interrogated power dynamics in the participants’ statements led to the development of two themes: (1) Narratives of, and created by, Research, and (2) Vulnerability and Risk in Research Participation. These themes reflected how the impacts of open data were experienced both individually and collectively. Participants acknowledged the potential benefits of open data for knowledge generation and improving services, but also expressed concerns about misuse, re-identification, and harmful narratives from secondary researchers that they had not engaged with. The findings highlight the importance of meaningful engagement with participant communities to ensure ethical and transparent open data practices, and for researchers to ensure that they make participants fully aware about the nature of the data sharing agreements they are entering (using genuinely accessible information documents). These insights have relevance and applicability to not only autism research, but also any scholarship involving marginalised populations making decisions about open data.

Open data has been promoted as a tool to improve the transparency, robustness, and efficiency of scientific research. However, the perspectives of participant communities, particularly those who are marginalised, are often overlooked in discussions around open data. This paper examines, for the first time, the views of autistic adults and parents of autistic people regarding open data practices in autism research. Thirty interviews were conducted, which considered participants’ views on different degrees of openness of research data, and the factors that would influence their level of comfort with their and/or their child’s data being shared. Pre-registered reflexive thematic analysis that interrogated power dynamics in the participants’ statements led to the development of two themes: (1) Narratives of, and created by, Research, and (2) Vulnerability and Risk in Research Participation. These themes reflected how the impacts of open data were experienced both individually and collectively. Participants acknowledged the potential benefits of open data for knowledge generation and improving services, but also expressed concerns about misuse, re-identification, and harmful narratives from secondary researchers that they had not engaged with. The findings highlight the importance of meaningful engagement with participant communities to ensure ethical and transparent open data practices, and for researchers to ensure that they make participants fully aware about the nature of the data sharing agreements they are entering (using genuinely accessible information documents). These insights have relevance and applicability to not only autism research, but also any scholarship involving marginalised populations making decisions about open data.

A diagnosis of autism does not provide sufficient information to understand how the world is experienced by an autistic person. The World Health Organisation's International Classification of Functioning (ICF) Core Sets for autism provides a framework from which a more in-depth understanding of an autistic person's profile of strengths and needs can be acquired. This is the first U.K. evaluation of the ICF CoreSets for Autism platform, an operationalisation of the ICF Core Sets for Autism via an online assessment. In a Development Phase, 20 autistic adults were supported to complete the assessment, provide feedback via think-aloud interviews and to evaluate it. In a Main Study, which was pre-registered, 464 autistic adults completed the assessment independently online and evaluated it. A participatory approach was used throughout. Using standardised questionnaires, overall autistic adults found the assessment to be ‘acceptable’ and usability was rated as ‘ok’ or better. This was also true for subgroups of autistic adults who expressed clinically significant autistic traits, anxiety or depression, those from minoritised ethnicities, older adults and who were unemployed. The findings suggest the ICF CoreSets for Autism platform has potential as a standardised evidence-based tool to improve understanding of autistic adults’ strengths and needs.

Background: Existing research has identified areas of strength and challenge in relation to autistic attention. However, there remains a limited phenomenological account of how autistic adults experience their attention in their everyday lives. This is important for developing an understanding of autistic attention which is not based only on comparisons to neurotypical benchmarks. Methods: Thirteen autistic adults took part in semi-structured interviews, making use of photo elicitation to explore their experiences around attention. Participant responses were analysed using Interpretative Phenomenological AnalysisResults: Three Group Experiential Themes (GETs) were developed: Interruption is Devastating, Interest Engagement as a Sanctuary, and Attentional Normativity. Participants described their attention as a sequential, deeply engrossed process. They reported that interruptions, especially from other people, were profoundly challenging, often leading to a collapse of their focus and an exhausting state of vigilance (GET1). Time spent deeply focused on interests was described as a sanctuary, providing both joy and replenishment of cognitive resources depleting through navigating inaccessible environments (GET2). Participants described navigating entrenched normative expectations about how attention should function which particularly impacted their experiences in employment (GET3).Conclusion: This work provides rich, contextualised insights into the phenomenology of autistic attention. We highlight elements across themes which resonate with the monotropism theory of attention. We consider how creating inclusive environments, particularly in the workplace, requires challenging normative expectations around attention.

A diagnosis of autism does not provide sufficient information to understand how the world is experienced by an Autistic person. The World Health Organisation’s International Classification of Functioning (ICF) Core Sets for Autism provides a framework from which a more in-depth understanding of an Autistic person’s profile of strengths and needs can be acquired. This is the first UK evaluation of the ICF CoreSets for Autism platform, an operationalization of the ICF Core Sets for Autism via an online assessment. In Study 1, 20 Autistic adults were supported to complete the assessment, provide feedback via think-aloud interviews and to evaluate it. In Study 2, which was pre-registered, 464 Autistic adults and 481 Non-Autistic adults completed the assessment independently online and evaluated it. Both studies used a participatory approach. Using standardised questionnaires both studies found the assessment “acceptable” and found usability to be “ok” or better. This was also true for subgroups of Autistic adults who expressed clinically significant autistic traits, anxiety or depression, those from minoritised ethnicities, older adults and who were unemployed. The findings suggest the ICF CoreSets for Autism platform has potential as a standardised evidence-based tool to improve understanding of Autistic adults’ strengths and needs.

The spatial cueing paradigm has illustrated that location cues result in attentional enhancement of target stimuli. However, evidence is mixed on whether proactive attentional suppression can be cued similarly. In this registered report, we used a hybrid flanker-visual search-spatial cueing paradigm in which participants were presented with informative or non-informative cues regarding the upcoming location of a target feature matching a distractor in the search array. We aimed to replicate and extend a previous study which found evidence that cues support attentional suppression. We repeated the experiment with informative and non-informative cue conditions blocked (Experiment 2) and with possible target and distractor locations separated (Experiment 3). Across all three experiments (total n = 554), we did not observe any evidence of cueing-enhanced attentional suppression. In Experiments 1 and 3, participant responses were slightly slower in the informative cue condition, suggesting that the cue itself captured attention when the cue type was interleaved and thus unpredictable trial-to-trial. Surprisingly, post-experiment assessment of distractor learning suggested participants had not learnt the association between cue and distractor location in any experiment. These findings do not support spatial cue-enhanced attentional suppression.

Open data has been promoted as a tool to improve the transparency, robustness, and efficiency of scientific research. However, the perspectives of participant communities, particularly those who are marginalised, are often overlooked in discussions around open data. For the first time, this paper examines the views of autistic adults and parents of autistic people regarding open data practices in autism research. Thirty interviews were conducted, which considered participants’ views on different degrees of openness of research data, and the factors that would influence their level of comfort with their and/or their child’s data being shared. Pre-registered reflexive thematic analysis that interrogated power dynamics in the participants’ statements led to the development of two themes: (1) Narratives of Research, and (2) Vulnerability and Risk in Research Participation. These themes reflected how narratives and risks around open data were experienced both individually and collectively. Participants acknowledged the potential benefits of open data for knowledge generation and improving services, but also expressed concerns about misuse, re-identification, and interpretations from secondary researchers leading to harmful narratives. Most participants preferred restricted access models over fully open data. The findings highlight the importance of meaningful engagement with participant communities to ensure ethical and transparent open data practices. We hope this work will inform not only autism researchers but also others working with marginalised populations on decision making about open data.