It is concluded that, according to autistic adults, early interventions should take an autism-affirmative approach, be developmentally appropriate and foster self-determination, and researchers and practitioners can use these findings to develop and provide support that aligns with autistic people’s priorities.
Abstract
For many years, early autism interventions were developed without the involvement of autistic people. This review explores the views and experiences of autistic adults regarding psychosocial/educational interventions for young autistic children. Four databases (Web of Science Core Collection, Education Resource Information Centre, Education Database and PsycINFO) were searched; 19 studies were identified. Quality appraisal was performed using the Quality Assessment with Diverse Studies tool. Qualitative data were analysed using thematic synthesis. Quantitative data were analysed using descriptive narrative synthesis, including textual description, tabulation and a visual representation. Five themes were developed among studies with qualitative data: Hear the child’s voice, Let the child be a child, Celebrate autistic lives, Understand autistic challenges and, finally, a cross-cutting theme, Damage done, on negative experiences of autistic people who underwent early interventions. In studies with quantitative data, autistic people endorsed well-being, adult support/accessibility and reducing harmful behaviours, and did not endorse outcomes related to reducing autism traits. We conclude that, according to autistic adults, early interventions should take an autism-affirmative approach, be developmentally appropriate and foster self-determination. Given that the present research included studies from varied cultures and backgrounds, further research is required to examine how individual differences influence perspectives on interventions. Lay Abstract Our study aimed to understand what earlier studies found when they asked autistic adults for their views on intervention and support for young autistic children. We were interested in the views of autistic adults whether they had taken part in early interventions or not. After searching through online records, we found 19 relevant studies. We evaluated the quality of the studies and then separated qualitative (text-based) and quantitative (number-based) data. In studies with qualitative data, we found five themes. Hear the child’s voice talks about child’s assent, Let the child be a child addresses support being play-based and fun, Celebrate autistic lives focuses on autism acceptance and Understand autistic challenges examines making society more accessible. Damage done outlines the negative experiences of autistic people who took part in early interventions. Studies with quantitative data were very different to each other, so we described their similar aspects. In four quantitative studies, autistic people rated intervention goals based on how good or important the goal is for the child. Autistic people said the best/most important goals focused on safety, child well-being and adult support. The worst/least important goals focused on changing autism characteristics such as stimming and eye contact. A graph was made to show this. We need more research on intervention practices and contexts and more research where we ask diverse autistic people: autistic parents, autistic children, men, people of colour and people with higher support needs. Researchers and practitioners can use these findings to develop and provide support that aligns with autistic people’s priorities.
Our understanding of psychological experiences of anxiety in autism could be improved if it were shaped by autistic individuals. However, anxiety research in autism often begins with cognitive conceptualisations drawn from neurotypical or non-autistic individuals. This qualitative study aimed to explore psychological experiences of anxiety using semi-structured one-to-one interviews with a diverse sample of 20 U.K.-based, autistic adults, aged 18–55 years. Transcripts were analysed using two complementary methods: conceptual content analysis, where existing theories were tested against the data with predefined codes; and reflexive thematic analysis, where meaning was constructed from the data while considering research subjectivity. Our sample highly endorsed existing cognitive constructs: intolerance of uncertainty (100% of participants), repetitive negative thinking (100%), attentional biases (70%) and intrusive mental imagery (70%). Some autism-specific characteristics were indicated. The endorsement of imagery is particularly striking given claims that autism is often associated with weak imagery. Autistic adults described the way in which being autistic interacted with anxiety, through psychological and lived experiences. Existing support for anxiety problems was deemed insufficient and may be improved by further refining our understanding of anxiety in autism through future quantitative and qualitative research. Lay Abstract Anxiety is a top priority for research for the autistic community. We could increase our understanding of what might contribute to anxiety problems in autism by speaking to autistic people and learning about the different experiences they have had. We interviewed 20 U.K.-based autistic adults (aged 18–55 years) and asked them about their anxiety problems, including how they felt about well-known ideas of what might be involved in anxiety in autism. We looked at the answers to the interviews in two ways. The first way considers what autistic people think about the well-known ideas. The second way looks at similarities in the answers that autistic people gave. All participants’ anxiety problems involved repeated negative thoughts and struggling with uncertain situations. Most also said that they tend to focus on noises or other sensory experiences within their environment and imagine situations in their mind when they are anxious. Being autistic came with challenges that could make them more anxious, including struggling with changes to routine and being bullied. Autistic people described how anxiety made their life difficult and ways in which current support for anxiety is not helpful enough. We discuss ways that we could better understand anxiety in autism and improve the support given to autistic people.
Rebecca J Roberts-Davis, Franscesca Happé, A. Lau-Zhu· Autism· 1 citation
AIMS
People with autism spectrum disorder (ASD) may experience hypo- or hyperreactivity to sensory input. To date, sensory features of ASD have mostly been studied in children, with people over the age of 18 underrepresented in research. Therefore, this scoping review focuses on sensory factors affecting the everyday lives of adolescents and young adults with ASD.
METHODS
The review followed the Joanna Briggs Institute guidelines and included peer-reviewed studies of people with ASD aged 15-29 years who have sensory challenges affecting their occupational engagement and participation. Literature was searched in five electronic bibliographic databases. Records identified from the initial database search (n = 2,959) were imported into Rayyan and screened blindly.
RESULTS
Qualitative content analysis was performed on six qualitative studies that met the inclusion criteria using Atlas.ti. Three categories were developed: (1) interconnectedness of social and sensory experiences, (2) individual pursuit of balance, and (3) achieving and sustaining professional competence.
CONCLUSIONS
This review suggests that sensory processing challenges profoundly influence occupational participation in young people with ASD, affecting not only their subjective experience but also their access to social, academic, and professional environments. Developing individualized sensory supports and environment adaptations are crucial for promoting meaningful occupational engagement and well-being.
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.
Participatory research offers a promising means to understand how autistic children and young people (CYP) can be supported and to co-create services or resources that meet their needs. While widely valued, evidence on the most effective ways to meaningfully engage autistic CYP, and on whether and how findings reach educators, is limited. This systematic review narratively synthesises studies reporting the use of school-based participatory research with autistic CYP and reports the approaches, methods, and outcomes of such projects. Initial searches across five databases yielded 1,515 results. After removal of duplicates, 493 studies were screened by abstract and title, and full-text screening was conducted on studies (n = 48) that appeared to meet the inclusion criteria. Studies that met pre-identified eligibility criteria (n = 22), and studies identified through backward citation (n = 2), were included. Creative idea generation, tangible methods, and visual methods are particularly effective for engaging this demographic. However, it was difficult to determine broader implications for schools, as few researchers reported sharing findings with educators. Findings highlight the potential for participatory research, if carefully designed and consistently shared with educators and decision-makers, to contribute to more inclusive schools responsive to the needs and strengths of autistic CYP.Lay AbstractParticipatory research means working with communities rather than doing research on them. In the context of autism, this approach involves collaborating directly with autistic children and young people to understand how schools can better support them and to co-create services or resources that meet their needs. While participatory approaches are widely valued, there is limited evidence on the most effective ways to meaningfully involve autistic children and young people in research. In this review, we examined how participatory research has been carried out with autistic children and young people in school settings. We searched five electronic databases for studies published between 2014 and 2024. From these searches, we found 1,515 studies. We then removed studies that were the same, which left us with 493. We then checked the abstract and titles of these 493 studies to see if we should include them in our review. We then read full texts for 48 studies and included 22. By checking the reference lists of the included studies, we identified two additional studies, bringing the total to 24. We found that different ways of involving autistic children and young people in research can work in school settings. Creative idea generation, tangible methods, and visual methods were particularly effective for helping them take part. However, many studies did not report whether findings were shared back with schools, making it difficult to assess broader impacts. Overall, our review highlights the potential for participatory research, when carefully planned and transparently shared with stakeholders, to support schools in becoming more inclusive and better meeting the needs and strengths of autistic students.
Chloe Johnson, Clare Wood, David Daley et al.· Autism· 0 citations
ABSTRACT: Introduction: Autism Spectrum Disorder (ASD) is classified as a neurodevelopmental condition that significantly impacts individuals' behavior, communication abilities, and social interactions. Objective: To analyze the process of including students with Autism Spectrum Disorder (ASD) within the pedagogical practices of Physical Education teachers in basic education settings. Methodology: This study employs a systematic review conducted in adherence to the PRISMA guidelines. The literature search was carried out using databases such as the Coordination for the Improvement of Higher Education Personnel (CAPES), the Latin American and Caribbean Literature on Health Sciences (LILACS), and the ERIC platform. Results: The database searches yielded a total of 46 articles. Following the screening process, six articles met the established eligibility criteria and were subsequently selected for evaluation and critical analysis. Discussion: The analysis of the studies included in this systematic review revealed significant discussions and relevant insights concerning the inclusion of students with Autism Spectrum Disorder (ASD) in Physical Education classes within the context of basic education. Conclusions: The analysis of the selected studies indicates the existence of research addressing the inclusion of students with Autism Spectrum Disorder (ASD) in Physical Education classes within elementary education. However, there remains a notable need for studies that provide a more comprehensive examination of the methodological strategies that teachers can employ to create a genuinely inclusive school environment.
Maria do Socorro Viana Rêgo, Francisco Janio Sampaio Bezerra, Andriana Regina da Silva et al.· Educação em revista· 0 citations
Employment is a key social determinant of health, yet autistic individuals face high levels of unemployment, with consequences for well-being and social inclusion. This exploratory study examined stakeholder perceptions regarding the inclusion of autistic individuals in public administration employment within the Italian context, considering its potential role in advancing health equity through stable and regulated work environments. A cross-sectional online survey was conducted to explore perceptions of current inclusion measures, the importance of specific inclusion domains, and the usefulness of potential support tools. Participants (n = 62) included autistic adults, family members, and professionals with expertise in autism. Quantitative data were analyzed using non-parametric tests, while qualitative responses were examined through reflexive thematic analysis. Quantitative findings showed that educators express more positive views on existing measures and greater support for new interventions compared to family members; autistic participants report intermediate perspectives. Qualitative analysis identified five areas: recognition of autistic perspectives, need for interventions, support figures, work personalization, and staff training. Although the study does not evaluate intervention effectiveness, the findings highlight stakeholder priorities and perceived needs related to employment inclusion. While exploratory and based on a limited sample, the results may inform future research and the development of more inclusive public employment practices.
Erica De Alfieri, Miriam Belluzzo, Veronica Giaquinto et al.· Trends in Public Health· 0 citations
