Current topics in participatory autism research.

Current topics in participatory autism research.

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Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to people’s lives and thus likely to have a positive impact. In the context of a large and growing body of autism research, with continued poor implementation, and some evidence of community dissa...

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... discussion concentrated on complex issues in par- ticipatory research, aiming to challenge the thinking even of those who are already supportive of the participatory research agenda. Thus, topics selected for elaboration here (see Figure 1) aim to move the debate forward, rather than repeating those (noted elsewhere) which motivated the series (e.g. need for adapted sensory envi- ronments; avoidance of deficit models and terminology -see Nicolaidis et al. (2011) and , for an expansion of these topics). ...

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The writing skills of autistic college students have received very little empirical attention. Previous research has suggested that autistic people may struggle with writing, in part, due to challenges with Theory of Mind (ToM). However, other research has highlighted a double empathy problem, wherein autistic people are categorized as struggling w...

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... In fact, "the why and how more than the what" as we move into a newer vision and understanding of autism research (Hartley et al., 2008) may be the key to including the full spectrum of those on the autism spectrum in the research narrative. Although no agreed-upon definition exists for classifying verbal ability in children with disabilities (Stedman et al., 2019), researchers should still move to attempt to capture these individuals' experiences until further research helps define and guide a gold standard of incorporating this subpopulation (Fletcher-Watson et al., 2019). ...
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Objectives Limited research has examined the experiences of children on the autism spectrum who have verbal expressive language, and no research to date has explored the physical activity (PA) preferences of children and the autism spectrum with complex communication needs (CCN). This exploratory qualitative study aimed to understand the PA preferences of children on the autism spectrum with CCN, based on previous PA experiences and the PA experiences of these families. Methods A picture preference chart interview was utilized to capture the PA preferences of the child participants. Pictures were coded based on activity type to explore themes in preferences. Semi-structured interviews were conducted with the children’s parents to explore PA experiences for the family and coded using thematic analysis. Results Children on the autism spectrum with CCN were able to express preferences for certain physical activities. Preferences were triangulated with semi-structured parent interviews and parental perceived child preferences. Additional semi-structured parental interviews presented the following themes regarding PA participation for family engagement: (a) the importance of PA and exercise, (b) sensory experiences participating in PA, and (c) atypical struggles. Conclusions Children on the autism spectrum with CCN were able to convey PA preferences (as triangulated by parental reports), and their opinions should be incorporated when designing physical activity programs and physical education experiences. PA participation of families who have a child on the autism spectrum with CCN provides for unique challenges, and more support is needed to promote engagement and improve health outcomes for both these affected individuals and their families.
... It represents an exercise in exploratory phenomenology and participatory sense-making [12,13], where we "let each other be" across our respective differences [14] and work together to explore our own and each other's experience [15]. In doing this, we also undertake the practical first steps in a quite radical form of the collaborative and co-constructed enquiry often now advocated for the field [16,17]. The implied provocation within our title reflects a central question that arose early in our inquiry: "How to characterize a difference like autism without constraining the freedom of identity or action of those falling on either side of its definition?" ...
... This shared phenomenological enquiry is we believe novel in working across the autistic/non-autistic "divide," alternating roles between interviewer and interviewee, and incorporating the positionality of the participants into interpretations made. This follows a participatory ethos and reduces the impact of power dynamics [16,28]. Our diverse experience and expertise helped to overcome misfires in communication and reduced unintentional "fishbowling" of autistic experience [29]. ...
... Our shared phenomenology enquiry is a first practical expression of a participatory and co-constructed approach to understanding autistic phenomenology in the context of neurodiverse and neurotypical experience [16]. As a first step, it is descriptive and cannot offer firm conclusions or solutions, but it suggests alternative theoretical, empirical, and therapeutic points of view for future enquiry. ...
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Introduction: Autism has typically been characterized by its external manifestations rather than experienced phenomenology, with consequent impacts on both research and practice. There have recently been increasing calls for more phenomenological enquiry in autism, but little actual work reported. Method: A shared participatory phenomenological self-investigation was conducted, by the four authors, of lived experience across the autistic/non-autistic divide. The sample size was chosen as necessary for the feasibility and acceptability to participants of such work in this context. Roles of "researcher" and "interviewee" were purposefully alternated between participants to establish trust and reciprocity. Initial phenomenological reduction or bracketing was applied to the description and recording of each participant's intimate lived experience in a number of key domains across social relationships, the physical environment, development, and in adult life. These experiences were shared within dialogue to open them to investigation and questioning from the others, with alternating interviewer and respondent roles. A third step synthesized these shared observations across individuals into themes of continuity and difference. Results: A number of emergent themes, such as the need for trust and reliability, and the impact of context on regulation of emotion, sociability, and empathy, showed striking commonalities between all participants. Other themes, such as primary sensory experience and social joining, pointed up more clear differences between autism and non-autism in development and the adult world. Themes of interest-focus and attention were marked by both commonalities and difference. Conclusions: This shared phenomenological method was taken as a first step within a new area of active investigation in autistic phenomenology. It proved successful in eliciting detailed information on self-experience. The results suggested hypotheses for a new understanding of autism within the wider "human" spectrum of experience; for instance, the common basic need for trust and social connection but striking differences in sensory experience. It suggested that some characteristics long thought intrinsic to autism, such as social mis-perception and reduced empathy, may be alternatively understood as state-dependent outcomes contingent on specific contexts and interactions. Implications are suggested for testing in further research, developmental theory, and intervention practice.
... Including the voices, perspectives, and contributions of autistic individuals in autism research is essential for improving research quality. 85 Black disabled adults have been historically excluded from accessing institutions of higher education (IHEs) due to overt racism and systemic barriers (e.g., lack of access to evaluation documentation). 83,[86][87][88] Without the inclusion of Black autistic adults' voices, their knowledge, lived experiences, and recommendations for the field, we continue to perpetuate Euro-centric practices, policy, and research. ...
... Historically, research, practices, and policies related to the needs of autistic individuals have been centered around white American culture. 85,87 Those practices are often implemented by white researchers and practitioners. As a result, there is a need for autism researchers who reflect the racial, ethnic, and gender diversity of autistic adults-that is, we need more scholars of color and more autistic researchers conducting autism research. ...
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Black autistic individuals, regardless of age, have not been centered in autism research. Instead, they often exist on the margins—on the periphery of autism research. In fact, Black autistic adults are largely absent from the literature. Most participants in autism research are majority-white autistic individuals and families. In this conceptual article, we use intersectionality and Dis/ability Studies and Critical Race Theory theories to contextualize Black autistic adults' experiences. Second, we argue that systemic disparities and methodological concerns are two contributors to the scholarly neglect of Black autistic adults in autism research. Third, we provide guidelines to support researchers in moving from neglect to inclusive research with Black autistic adults.
... Public and patient involvement (PPI) provides a solution for bridging the disconnect between researchers working on autism projects and the autism community. PPI has been identified as a priority by researchers and the autism community alike, and recent studies highlight the benefits of PPI in terms of improving the quality and relevance of autism research (Fletcher-Watson et al. 2019). PPI refers to research carried out 'with' or 'by' members of the public rather than 'to' or 'for' them, which helps researchers and the autism community to align on all aspects of research, including setting research priorities, appropriate study design, and dissemination of results. ...
... Please note that a limitation of the current study is that none of the researchers were themselves autistic. Participatory research practices have potential to improve research quality, relevance, and translational impact (Fletcher-Watson et al., 2019;Long, Panese, Ferguson, Hamill and Miller, 2017). ...
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Unemployment and underemployment have consistently been shown to be higher in autistic adults relative to non-autistic adults. This may be due, in part, to a lack of workplace accommodations being made for autistic people. One factor that may contribute to employment inequalities in autistic people is differences in attitudes towards interpersonal touch. This study acts as a preliminary investigation into whether employed autistic and non-autistic participants differ in their attitudes towards touch in the workplace, and in their loneliness and wellbeing. The current dataset was drawn from a larger online survey (the Touch Test) designed to explore attitudes and experiences towards touch. We found that employed autistic participants had more negative attitudes to general, social and workplace touch relative to non-autistic participants. Autistic participants also experienced greater loneliness and reduced wellbeing. Attachment-related anxiety was the only significant predictor of wellbeing in employed autistic adults. However, attachment-related anxiety, general attitudes to touch and the role of touch in the workplace predicted wellbeing in employed non-autistic adults. With regards to loneliness, general attitudes to touch and the role of touch in the workplace predicted loneliness in autistic participants. We also replicated the finding that a greater proportion of autistic participants were unemployed relative to non-autistic participants. Collectively, this research highlights the importance of considering touch in research investigating employment, and its impact on loneliness and wellbeing, in autistic participants.
... Nevertheless, systematic reviews and meta-analyses have concluded that HRV biofeedback can be an effective treatment for symptoms in a range of different populations, including both adults [20,21] and children [50]. Providing interventions for symptoms such as anxiety that affect people with ASD has been emphasized as a vital area for research [51], and reviews have acknowledged the need to involve the ASD community directly in research [52,53]. HRV biofeedback has been used in a range of populations for anxiety management. ...
Article
Background People with autism spectrum disorder (ASD) frequently experience high levels of anxiety. Despite this, many clinical settings do not provide specialist ASD mental health services, and demand for professional support frequently outstrips supply. Across many sectors of health, investigators have explored digital health solutions to mitigate demand and extend the reach of professional practice beyond traditional clinical settings. Objective This critical appraisal and pilot feasibility study examines heart rate variability (HRV) biofeedback as an approach to help young people with ASD to manage anxiety symptoms outside of formal settings. The aim is to explore the use of portable biofeedback devices to manage anxiety, while also highlighting the risks and benefits of this approach with this population. Methods We assessed the feasibility of using home-based HRV biofeedback for self-management of anxiety in young people with ASD. We adopted coproduction, involving people with ASD, to facilitate development of the study design. Next, a separate pilot with 20 participants with ASD (n=16, 80% male participants and n=4, 20% female participants, aged 13-24 years; IQ>70) assessed adoption and acceptability of HRV biofeedback devices for home use over a 12-week period. Data were collected from both carers and participants through questionnaires and interviews; participants also provided single-lead electrocardiogram recordings as well as daily reports through smartphone on adoption and use of their device. Results Pre-post participant questionnaires indicated a significant reduction in anxiety in children (t6=2.55; P=.04; Cohen d=0.99) as well as adults (t7=3.95; P=.006; Cohen d=0.54). Participant age was significantly negatively correlated with all HRV variables at baseline, namely high-frequency heart rate variability (HF-HRV: P=.02), the root mean square of successive differences in normal heartbeat contractions (RMSSD: P=.02) and the variability of normal-to-normal interbeat intervals (SDNN: P=.04). At follow-up, only SDNN was significantly negatively correlated with age (P=.05). Levels of ASD symptoms were positively correlated with heart rate both before (P=.04) and after the intervention (P=.01). The majority (311/474, 65.6%) of reports from participants indicated that the devices helped when used. Difficulties with the use of some devices and problems with home testing of HRV were noted. These initial findings are discussed within the context of the strengths and challenges of remotely delivering a biofeedback intervention for people with ASD. Conclusions HRV biofeedback devices have shown promise in this pilot study. There is now a need for larger evaluation of biofeedback to determine which delivery methods achieve the greatest effect for people with ASD. Trial Registration ClinicalTrials.gov NCT04955093; https://clinicaltrials.gov/ct2/show/NCT04955093
... Autistic people are asking to have higher involvement in research related to them from an early stage, especially in the design of the research questions [91]. It is often the case that research is focused on autistic children, where their parents and carers are the informants. ...
Conference Paper
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The study of human responses to sound generally recognises the great importance of taking into account the diversity existent in sounds and acoustics environments, but it rarely adopts the same approach with respect to the diversity in human beings and their responses, providing results as averages meant to represent the 'normal' response, and disregarding discrepancies as 'outliers'. In this paper, neurodiversity and autism is presented as part of the aural diversity factors that can lead to having different experiences of sounds, and an ongoing doctoral research project aiming at representing autistic people's experiences of the acoustic environment is introduced. Differences in perception of sounds can entail different challenges and needs, that are not currently contemplated in acoustics and soundscape research. The authors believe that all these aspects ought to be considered to widen our understanding of the field, to improve research and practice, and to create acoustic environments that are not just designed for a limited part of the population.
... On the other hand, self-reported questionnaires have historically been underutilized (Kim & Lecavalier, 2021) due to concerns regarding difficulties identifying and conveying internal experiences (Kinnaird, Stewart, & Tchanturia, 2019). More recently, however, evidence suggests that self-report measures can be valid and useful in autistic samples (Kim & Lecavalier, 2021;Ozsivadjian, Hibberd, & Hollocks, 2014;Schiltz, McIntyre, Swain-Lerro, Zajic, & Mundy, 2017), which is accompanied by a heightened recognition of the need to elevate autistic perspectives and voices in autism research (Fletcher-Watson et al., 2019). While use of self-report in autism research is increasing, unfortunately, many self-reported questionnaires remain inaccessible by autistic individuals across the spectrum due to confusing vocabulary, complex sentence structure, lack of clarity in response options, ableist language, and failure to assess autism-specific dimensions of constructs (Nicolaidis et al., 2020). ...
Chapter
Social skills interventions (SSIs) are one of the most commonly utilized treatment approaches for autistic individuals across the lifespan, with the goal of mitigating negative impacts of the social communication differences associated with autism, including peer rejection, social isolation, and poor mental health. Thorough and accurate assessment of the efficacy of SSIs is critical in this population, given its widespread use in the autism community. The current paper serves as a scoping review of outcome measurement in SSI research in autistic populations. The strengths and limitations of measurement methodologies (e.g., questionnaires, observational measures) are considered, with commonly used outcome measures discussed in detail, including psychometric properties when available. The role of diversity factors, including race/ethnicity and gender, in relation to outcome measurement is reviewed. Overall, results of this review indicate a need for continued research in measurement to refine the field's ability to assess treatment response following SSIs. In particular, a greater understanding of how existing measures operate in autistic samples is needed. Further, given the historical heavy reliance on and limitations of questionnaire measures in SSI research, multi-method, multi-informant assessment approaches to outcome measurement are indicated for future SSI research.
... When reflecting on well-being, autistic people have typically been excluded from contributing to research (Lam et al., 2020;. As a result, their experiences and opinions do not contribute to knowledge production (Bölte & Richman, 2019;Fletcher-Watson et al., 2019). Considering quality of life, reports included in research often come from caregivers and professionals (Billstedt et al., Gerber et al., 2011), though these reports have been cricisised as not mirroring autistic people's views and experiences (Sheldrick et al., 2012;Shipman et al., 2011). ...
... In the specific field of autism, participatory research has been described as enabling meaningful input, as well as improving benefits and outcomes relevant to the population (Long et al., 2017;Fletcher-Watson et al., 2019). Whilst dated, a frequent tool enlisted to determining the different types of research participation is Arnstein's ladder of participation (Arnstein, 1969). ...
... Namely, researchers rated higher levels of engagement that that suggested by autistic individuals and their families (Pellicano et al., 2014). In addition, funding and output in the United Kingdom was not considered to align with practitioners, individuals, and families' view of what should be prioritised within research (Fletcher-Watson et al., 2019;Pellicano et al., 2014). Various explanations for this have been considered, with Nicolaidis and Raymaker (2015) suggesting the traditional field of scientific enquiry is not best placed to conduct research in this field. ...
Thesis
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Surfacing the Perspective of Autistic Girls Aged Between Thirteen and Eighteen Within a Complex Social Discourse on Autism: A Qualitative Inquiry
... what research needs to be done, how it is done and how it is caried out (Cornwall & Jewkes, 2001). Therefore, one way to move forward is to have a collaboration between the autistic and non-autistic communities that will bring about a facilitative environment to investigate relevant and crucial research questions (Fletcher-Watson et al. 2019). For instance, the autistic narratives produced from this research may provide a platform to include an autistic voice in understanding the experiences faced by the autistic community. ...
Article
This thesis aimed to investigate how autistic individuals are perceived by non-autistic individuals in the absence of a social context. An experimental paradigm was developed and piloted in order to test retrodictive mindreading (Chapter 2). The paradigm had a target phase, in which behavioural stimuli were created (in a non-social context), and a perceiver phase, in which judgments were made regarding the behavioural stimuli. Findings suggested that people do emit observable behavioural signals, while recalling their memories in response to cue words. The same paradigm was used in Chapter 3 to investigate differences between autistic and neurotypical targets in measures of readability, social favourability, and expressiveness from neurotypical perceivers. Findings revealed that perceivers were able to make accurate inferences about autistic behaviour and, in some cases, were better at inferring autistic behaviour when compared to the neurotypical behaviour. These findings were consistent in perceivers of different age groups. Autistic targets were also judged to be more expressive than the neurotypicals. However, in terms of social favourability ratings, autistic individuals were less liked than the neurotypical individuals by perceivers from three age groups: 10-12 years, adults and older adults. No evidence was found that autistic individuals were less liked by children aged between four to nine years. In Chapter 4, two studies were carried out to investigate a range of aspects of the written narratives of autistic and neurotypical targets while writing about emotional experiences. While the first study focused only on the numbers of words used of different types, the second study aimed to investigate more holistic differences in the quality of autistic and neurotypical writings. Findings suggested that autistic individuals’ narratives have many similarities but also some differences from neurotypical individuals' narratives in the quality and the structural aspects of writing. Autistic individuals even seemed to be better on some of the measures. In Chapter 5, the study aimed to investigate whether people can correctly guess autism diagnosis from watching brief samples of behaviour or from reading narratives that describe their emotional experiences. The study also looked at the effect of diagnostic disclosure on social favourability ratings. Findings indicated that although perceivers tended to judge that targets are neurotypical as opposed to autistic, nevertheless to some extent autistic individuals can be distinguished based on their behaviours and also from written excerpts that describe their life experiences. Furthermore, when informed that some targets were autistic, perceivers rated all targets to be less likeable compared to the condition when no diagnostic was used. This suggested that people seem to have a negative (implicit) attitude or stigma towards autistic individuals that influences their judgments. In conclusion, this work suggests people may not find it difficult to accurately perceive autistic individuals when a social context is not involved and using text as a means of communication with the non-autistic individuals may protect autistic individuals from being affected by the negative perceptions of the non-autistic individuals.