Autism最新文献

{"title":"'You feel part of something bigger': Stakeholders' experiences of a long-term community-academic participatory research partnership.","authors":"Elizabeth Pellicano, Catherine A Bent, Teresa Iacono, Kristy Capes, Shannon Upson, Kristelle Hudry","doi":"10.1177/13623613251348485","DOIUrl":"https://doi.org/10.1177/13623613251348485","url":null,"abstract":"<p><p>Many community-academic partnerships are established to conduct meaningful research and practice. Yet, little is written about their sustainability and what does exist suggests that effective partnerships are hard to sustain. In this study, we sought insights into what might support successful, enduring community-academic partnerships focused on early childhood autism service provision. We conducted semi-structured interviews and focus groups with 30 staff connected to a university-based early childhood service in education, allied health, management, and research roles, who had been involved in a decade-long community-academic partnership. We analysed the data using reflexive thematic analysis adopting an inductive approach. We identified three key themes. Staff shared strong values and commitments towards inclusive practice and evidence-based practice, which were embedded in the ethos of the partnership (Theme 1). They reported tangible, mutual benefits from working in partnership, with gains in learning and confidence supporting autistic children and families (Theme 2). Interviewees also highlighted the importance of strong equitable relationships, open communication, and fair processes, even if these were not always straightforward to achieve (Theme 3). These insights illustrate the value of ongoing monitoring of community-academic partnerships seeking to inform autism research programmes, policies and practices, while also building sustained community capacity.Lay AbstractWhen academic researchers work in partnership with community members, the research that gets done is usually more meaningful to people's everyday lives. But these 'community-academic partnerships' can be difficult to set up, and even more difficult to keep going. In this project, we wanted to know what factors help to support the success of long-term community-academic partnerships, specifically for early childhood autism services. We spoke in depth to 30 staff connected to a university-based early childhood service, including early childhood educators, allied health professionals (psychologists, speech pathologists, occupational therapists), people managing the service and researchers. All had been involved in a community-research partnership that had been going on for a decade. Two researchers independent of the service led the interviews and analysis, looking for patterns in participants' responses. We identified three main ideas or 'themes'. Staff spoke of their strong values and commitments towards inclusive practice and evidence-based practice, which were shared among those within the partnership (Theme 1). They felt they had learned a lot from being involved in the partnership and had gained confidence supporting autistic children and families (Theme 2). Above all, though, they spoke of how the relationships within the partnership really mattered to making it a success. They emphasised the importance of trust, good communication and fair processes - but also no","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251348485"},"PeriodicalIF":5.2,"publicationDate":"2025-06-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144324419","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A mixed-methods study of autistic and non-autistic community member participation in autism research.","authors":"Sarah L Curtiss, Sarah Tillman, Majd Subih, Kaitlyn Myers","doi":"10.1177/13623613251348543","DOIUrl":"https://doi.org/10.1177/13623613251348543","url":null,"abstract":"<p><p>Participatory research is one pathway for advancing the agenda of autistic advocates; however, little is known about the attitudes and values of autism researchers toward participatory research. This is a participatory research mixed-methods study of 215 survey respondents and 21 interviewees, all corresponding authors of published autism research papers. Our aim was to identify attitudes and practices about participatory research with autistic and non-autistic community partners. We found relatively low rates of various participatory strategies, moderate rates of barriers to participatory research, and moderate endorsement of the importance of participatory research. The interviews elucidated participatory research's best practices, complexity of barriers, and transformative power to positively impact autism research. Interviewees discussed the connection between participatory research and decisions about language. The survey responses indicated that 30% of autism researchers never used identity-first language. An emergent theme from the interviews explored the unique contribution of insider research-research in which an autistic person brings their expertise derived from lived experience and formal research training. This research provides descriptions of the current state of participatory autism research and guidance for its utilization.Lay AbstractParticipatory research is a way for autistic advocates, other community advocates, and researchers to work together for the benefit of the autistic community. Participatory research is when community members are partners throughout the research process, for example, selecting research questions, determining research methods, and interpreting results. However, little is known about autism researchers' attitudes and values about participatory research. This research describes the participatory research strategies autism researchers use, researchers' attitudes toward participatory research, and researchers' insights into best practices in participatory research. We looked at participatory autism research involving autistic people and non-autistic people who are connected to the autistic community, such as parents and teachers of autistic people. We surveyed 215 autism researchers to find out how much autism research is participatory, how important autism researchers think participatory research is, and what barriers get in the way of doing participatory autism research. On average, researchers who responded to the survey reported relatively low rates of participatory research, medium rates of barriers to participatory research, and medium agreement on the value of participatory research. The survey also asked what language they use regarding autism; a significant proportion of researchers in the study reported never using identity-first language (e.g., autistic person, as opposed to person-first language; person with autism). We also interviewed 21 of the researchers who responded to the survey. ","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251348543"},"PeriodicalIF":5.2,"publicationDate":"2025-06-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144324415","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"'Picking the best of a bad bunch': Exploring stakeholder perspectives of self-harm assessment tools for autistic adults.","authors":"Victoria Newell, Caroline Richards, Sarah Cassidy","doi":"10.1177/13623613251348555","DOIUrl":"https://doi.org/10.1177/13623613251348555","url":null,"abstract":"<p><p>Autistic people are at greater risk of self-harm than non-autistic people, yet no tools exist specifically for assessing self-harm in this population. We therefore conducted two focus groups with autistic adults (n = 5) and professionals (n = 4) to examine their perspectives on three existing self-harm assessment tools (Non-Suicidal Self-Injury - Assessment Tool, Inventory of Statements About Self-Injury and Questionnaire for Non-Suicidal Self-Injury). Using a reflexive thematic analysis, we found one overarching theme - 'picking the best of a bad bunch' - where participants acknowledged some strengths of the tools, but multiple limitations outweighed these. Subthemes included cognitive considerations (e.g. complexity, length, working memory demands, introspection), missing elements (e.g. broader self-harm behaviours, functions, context, support) and challenges in conceptualising self-harm, particularly around intentionality and stimming. Participants also stressed the importance of addressing stigma, considering co-occurring conditions like attention-deficit hyperactivity disorder and intellectual disabilities and upholding a duty of care. Overall, findings show that existing self-harm assessment tools are not appropriate or acceptable for autistic adults who self-harm, indicating a clear need for a new self-harm assessment tool developed with and for autistic people.Lay abstract<b>The perspectives of autistic adults and professionals on existing self-harm assessment tools</b>Self-harm is defined as when someone intentionally hurts or poisons themselves, regardless of the reason. This can include suicide attempts as well as behaviours such as cutting, hitting or burning as a way to express or manage difficult feelings. Concerningly, autistic people are more likely to self-harm than non-autistic people, but there are currently no tools specifically designed to assess self-harm in this group. This makes it harder for researchers and service providers to identify autistic people who self-harm and offer the right support or treatment. Previous studies have suggested that three existing self-harm assessment tools could be adapted for autistic people, but it is unclear what autistic adults and professionals think about these tools. We conducted two focus groups: one with autistic adults who have self-harmed and another with professionals who work with autistic people who self-harm. Both groups felt that none of the three tools were suitable for autistic people. They explained that some questions might be harder for autistic people to answer, such as those requiring them to remember specific details or identify their emotions. They also noted the tools missed out on important aspects of the autistic experience, like managing sensory and social overload. Both groups highlighted that self-harm is complex and discussed the overlap with behaviours such as stimming (e.g. repetitive movements or sounds). They emphasised the importance of a supportive a","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251348555"},"PeriodicalIF":5.2,"publicationDate":"2025-06-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144324418","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"'I live with my emotions much better now': A qualitative study of autistic adults' subjective experience of dialectical behaviour therapy.","authors":"Luisa Weiner, Doha Bemmouna","doi":"10.1177/13623613251348271","DOIUrl":"https://doi.org/10.1177/13623613251348271","url":null,"abstract":"<p><p>Many Autistic adults without intellectual disability experience emotion dysregulation, which is associated with non-suicidal self-injury and suicidal behaviour. Dialectical behaviour therapy has been shown to be feasible, acceptable and potentially effective is supporting Autistic adults without intellectual disability with improved emotion regulation. Since dialectical behaviour therapy research is in its early stages in the field of autism, it is crucial to better understand the subjective experience of Autistic adults who received dialectical behaviour therapy to improve its pertinence for this population. Twenty-two Autistic adults presenting with emotion dysregulation with non-suicidal self-injury and/or suicidal behaviour/ideation who received a comprehensive dialectical behaviour therapy were interviewed using a semi-structured approach. A reflexive thematic analysis was conducted. Three superordinate themes were identified from the thematic analysis: (1) dialectical behaviour therapy is highly useful, structured and demanding; (2) dialectical behaviour therapy leads to changes in emotion labelling, emotion regulation and relationships; and (3) self-acceptance and feeling empowered to handle life's challenges. Ideas to foster the pertinence of dialectical behaviour therapy for Autistic adults were also collected. Our findings indicate that dialectical behaviour therapy was experienced as highly helpful despite the effort it requires. Participants reported changes in emotion experience, social relationships, self-concept and quality of life, probably due to increased emotion awareness, emotion control and self-regulation. Suggestions include the increased use of modelling to foster skills acquisition.Lay AbstractMany Autistic adults struggle with their emotion regulation. Dialectical behaviour therapy is the main therapy available to teach emotion regulation skills to people with this kind of struggle. Prior work has shown that dialectical behaviour therapy might be effective for Autistic people. Yet interest in dialectical behaviour therapy is new in the field of autism, so it is important to understand whether and how the therapy may help Autistic adults better live with their emotions. This article uses interviews conducted with 22 Autistic people following dialectical behaviour therapy. We outline several factors that might make dialectical behaviour therapy effective for Autistic people. For instance, dialectical behaviour therapy seems to help Autistic people better label and understand their emotions, but also accept and respect themselves. Nevertheless, dialectical behaviour therapy is demanding and some changes are suggested to improve the effects of dialectical behaviour therapy, such as providing a less intensive format to diminish fatigue. Our article provides evidence for the usefulness of dialectical behaviour therapy to help Autistic adults better deal with their emotions and improve their quality of life. Building from","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251348271"},"PeriodicalIF":5.2,"publicationDate":"2025-06-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144324417","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Camouflaging and identity development among autistic female and gender-diverse youth: A qualitative exploration.","authors":"Krista N Drapalik, Daniel J Magin, Melissa L Rinaldi, Kristin V Christodulu","doi":"10.1177/13623613251345855","DOIUrl":"https://doi.org/10.1177/13623613251345855","url":null,"abstract":"<p><p>Adolescence is a vulnerable developmental period for autistic youth. Autistic adolescents often use camouflaging to combat social challenges, perceived differences, and stigmatization. Although adolescence is an integral period for identity development, integration of these topics remains understudied in current literature. Evidence of elevated camouflaging rates among autistic females and gender-diverse adults underscores the need to examine the developmental trajectory of these topics. The present study qualitatively explored first-person perspectives on camouflaging and identity formation among autistic female and gender-diverse youth. Ten autistic adolescents (female: <i>n</i> = 7; gender diverse: <i>n</i> = 3) and their caregivers were enrolled in the present study. Youths completed a semi-structured interview or focus group discussion. Data were qualitatively analyzed and produced several prominent themes in three domains of investigation: (1) the nuts and bolts of camouflaging, (2) the aftermath of camouflaging, and (3) understanding being autistic. Identified themes and subthemes are discussed. Results demonstrated that autistic youth employ complex camouflaging strategies, motivated and reinforced by their experiences within society, that hold damaging consequences for their self-understanding and well-being. These findings reinforce the harmful implications of camouflaging on youths' positive identity development, mental health, and well-being. Implications and future directions are discussed.Lay AbstractAdolescence is a challenging time for autistic youth. Many autistic adolescents change their behavior in social situations to adapt or cope with social challenges, feeling different, and/or stigma. We conducted in-depth discussions with autistic adolescents who identify as female or gender-diverse to understand how changing their behavior in social situations impacts their identity, or self-understanding. Ten autistic adolescents and their caregivers were included in the study. Discussions were analyzed to understand how and why youths change their social behavior and the impact it has on their self-understanding. Participants described using many complex strategies to change their social behavior that are influenced by negative views our society has about people's differences. The strategies often harmed participants' self-understanding and negatively affected their overall well-being. The results are important for understanding how to support autistic adolescents' self-understanding, mental health, and well-being.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251345855"},"PeriodicalIF":5.2,"publicationDate":"2025-06-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144324416","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"There is nothing\"-Exploring diagnostic and service access for autistic individuals in Uruguay: A qualitative study.","authors":"Maria Cecilia Montenegro, Gabriela Garrido, Leyla Feize, Liza Talavera-Garza, Bianca T Villalobos, Cecilia Montiel-Nava","doi":"10.1177/13623613251345334","DOIUrl":"https://doi.org/10.1177/13623613251345334","url":null,"abstract":"<p><p>Due to the higher autism research presence of higher-income countries, the known social and cultural experiences of families raising a child with autism are centered on their realities. This narrative overlooks the experiences of many families who do not fit this archetype, such as those residing in low- and middle-income countries, who are particularly challenged by the limited availability of trained professionals and barriers to accessing diagnosis and evidence-based treatments. That is the case in Latin American countries, such as Uruguay, where the present project transpires. By utilizing a Theory of Change framework, specifically developed to be used in low- and middle-income countries, the present study explores diagnostic and service barriers in Uruguay. The study included semi-structured interviews with caregivers of autistic individuals and key informants residing in Uruguay. Participants were selected using a purposive sample technique. Data analysis consisted of reflexive thematic analysis. Salient themes consisted of multiple barriers to diagnostic and service access due to a multistep process, limited awareness of autism characteristics, a hesitancy to provide a diagnosis, and few professionals who specialize in autism. For those residing outside the capital, additional difficulties were experienced.Lay AbstractCountries with higher monetary means to conduct research are able to have not only better knowledge of the realities of autistic individuals and their families but also better access to diagnostic and intervention services. In countries with lower income, there is limited understanding of autistic experiences and also issues with access to services due to multiple reasons, like services only being accessible in certain regions, few trained professionals, and long waitlists. This study seeks to understand possible diagnostic and service barriers experienced by autistic individuals residing in Uruguay. To understand the local realities, parents and specialists working with autistic individuals were interviewed, and the information gathered was analyzed by finding patterns that were used to form themes that included the shared experiences among participants. Some of the themes that were identified included reports of difficulties in accessing diagnosis and interventions, either because there were many steps needed to guarantee these services or because there was a limited awareness of autism spectrum disorder and its characteristics by providers, which resulted in a hesitation to diagnose. Also, participants described very few professionals who specialize in autism spectrum disorder. For those residing outside the capital, additional difficulties were experienced.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251345334"},"PeriodicalIF":5.2,"publicationDate":"2025-06-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144315848","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Comparing trajectories of sport participation for autistic- and non-autistic-youth: A group-based multi-trajectory modelling approach.","authors":"Martin O'Flaherty, Jessica Hill, Matthew Bourke, Sjaan Gomersall, Sean Tweedy, John Cairney","doi":"10.1177/13623613251345345","DOIUrl":"https://doi.org/10.1177/13623613251345345","url":null,"abstract":"<p><p>Autistic children are less likely to participate in sport than non-autistic children, but we know little about how patterns of participation in team and individual sport change across childhood. Drawing on a nationally representative cohort of Australian children, this study analysed trajectories of participation in team and individual sport between the ages of 8 and 15 using a group-based multiple trajectory modelling approach. A five-group solution was found to be the best fit to the data, identifying distinct patterns of sport participation over time. In comparison with non-autistic children, autistic children were more likely to belong to the 'sport avoider' group with low participation in both team and individual sport at all ages. Conversely, autistic children were less likely to be classified in the 'team sportsperson', 'ex-team sportsperson' or 'mixed sportsperson' groups. No difference in the likelihood of belonging to the 'individual sportsperson' group was found. Risk factors for trajectory group membership were similar for autistic and non-autistic children. Our findings indicate that autistic children are particularly likely to experience exclusion from team sport environments, and this exclusion persists over time. Similar rates of participation in individual sport for autistic and non-autistic children indicate that these environments may be more supportive for autistic children.Lay abstractAutistic children are less likely to participate in sport than non-autistic children, but we know little about how patterns of participation in team and individual sport change across childhood. Drawing on data for a group of Australian children whose families were reinterviewed between ages 8 and 15, the present study patterns of participation in team and individual sport over time. Findings from the analysis suggested that children could be grouped into five patterns of participation in team and individual sport between the ages of 8 and 15. In comparison with non-autistic children, autistic children were more likely to belong to the 'sport avoider' group with low participation in both team and individual sport at all ages. Conversely, autistic children were less likely to belong to the 'team sportsperson', 'ex-team sportsperson' or 'mixed sportsperson' groups. Similar numbers of autistic and non-autistic children belonged to the 'individual sportsperson' group. Factors linked to patterns of participation over time were similar for autistic and non-autistic children. Our findings indicate that autistic children are particularly likely to experience exclusion from team sport environments, and this exclusion persists over time. Similar rates of participation in individual sport for autistic and non-autistic children indicate that these environments may be more supportive for autistic children.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251345345"},"PeriodicalIF":5.2,"publicationDate":"2025-06-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144274127","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding Repetitive Behaviours: A clinical and cost-effectiveness, multi-site randomised controlled trial of a group for parents and carers of young autistic children.","authors":"Victoria Grahame, Ashleigh Kernohan, Ehsan Kharati, Ayesha Mathias, Chrissie Butcher, Linda Dixon, Sue Fletcher-Watson, Deborah Garland, Magdalena Glod, Jane Goodwin, Saoirse Heron, Emma Honey, Ann Le Couteur, Leila Mackie, Jessica Maxwell, Lewis Montgomery, Emmanuel Ogundimu, Helen Probert, Deborah Riby, Priyanka Rob, Leanne Rogan, Laura Tavernor, Luke Vale, Elspeth Imogen Webb, Christopher Weetman, Jacqui Rodgers","doi":"10.1177/13623613251333175","DOIUrl":"https://doi.org/10.1177/13623613251333175","url":null,"abstract":"&lt;p&gt;&lt;p&gt;Restricted and repetitive behaviours vary greatly between autistic people. Some are a source of pleasure or create opportunities for learning; others may be detrimental in day-to-day life or cause harm. We have developed, in close collaboration with parents/carers, the Understanding Repetitive Behaviours programme, designed for families of young autistic children, to help them recognise, understand and respond sensitively to their child's impactful restricted and repetitive behaviours. This study is a clinical and cost-effectiveness, multi-site randomised controlled trial of the Understanding Repetitive Behaviours parent programme versus a psychoeducation programme (equivalent to current best practice), learning about autism. Participants were parents/carers, with an autistic child aged between 3-9 years and 11 months. The study was delivered across three sites in England and Scotland. Analyses were completed using intention-to-treat principles. Two hundred and twenty seven families were randomised (113 in LAA; 114 in Understanding Repetitive Behaviours arm). No differences were found between the arms on the primary outcome measure (The Clinical Global Impression - Improvement scale). Analysis of secondary outcomes indicated that children in the Understanding Repetitive Behaviours arm were more likely to be rated as responders in target impactful restricted and repetitive behaviours at 24 weeks but that this effect was not maintained at 52 weeks. Improvements in parent and family functioning were apparent, with no evidence of differences between the arms. The study reconfirms that it is important that clinicians consider both restricted and repetitive behaviours and social communication needs of autistic children with parents when planning appropriate support.Lay abstractAutistic children, frequently repeat the same behaviours over and over, have specific interests or like things to stay the same. These behaviours and interests are often fun and helpful. However, sometimes they can impact negatively on day-to-day life or put the child at risk of harm. Working closely with parents of autistic children, we developed an 8-week programme (Understanding Repetitive Behaviours) to help them recognise and understand these behaviours. This study aimed to find out whether the understanding repetitive behaviour programme was helpful and good value for money. Two hundred and twenty seven families were allocated by chance to receive either Understanding Repetitive Behaviours or a learning about autism programme. When experts made judgements about whether children showed positive changes across various measures, and these were analysed, there were no differences between the programmes. However, parents who attended the Understanding Repetitive Behaviours programme reported improvement in one of their child's specific repetitive behaviour (selected to be the main focus of the Understanding Repetitive Behaviours programme) at 24 weeks after the end of the ","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251333175"},"PeriodicalIF":5.2,"publicationDate":"2025-06-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144246213","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a \"CBPR-Nested Delphi Process\".","authors":"Christina Nicolaidis, Mirah Scharer, Dora M Raymaker, Joseph Vera, Todd Edwards, Ian Moura, Mary Baker-Ericzén, Joelle Maslak, Liu-Qin Yang, Rachel Kripke-Ludwig, Steven K Kapp, Andrea Joyce, Anna Wallington","doi":"10.1177/13623613251322082","DOIUrl":"https://doi.org/10.1177/13623613251322082","url":null,"abstract":"&lt;p&gt;&lt;p&gt;People are increasingly recognizing the need for service interventions to improve the lives of autistic adults. However, less is known about how to best evaluate such services. We aimed to identify (1) which self-reported outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) what survey instruments would be needed to measure them. We nested a traditional researcher-driven \"Delphi process\" within our community-based participatory research approach in what we are calling a \"CBPR-Nested Delphi Process.\" The process allowed us to reach a full consensus among 53 experts with professional and lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers. The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available instruments to measure these outcomes would need adaptations to be used with autistic adults (or proxies). Researchers and service providers should consider targeting interventions to these measurable outcomes and evaluating them using instruments that have been co-developed with autistic adults.Lay abstract&lt;b&gt;Why was this project done?&lt;/b&gt;People are starting to recognize the need for services to improve the lives of autistic adults. But less is known about how to best evaluate such services.&lt;b&gt;What were the goals of the project?&lt;/b&gt;To identify (1) which outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) how we can successfully measure them using surveys.&lt;b&gt;What did the researchers do?&lt;/b&gt;We used a method called a \"Delphi process\" that gets input from lots of different experts. We used that method inside our own long-standing community-based participatory research (CBPR) process so that we could share power between the academic and community members of our team. We reached a full consensus (agreement) among 53 experts. These experts had professional and/or lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers.&lt;b&gt;What does this study add?&lt;/b&gt;The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available surveys that try to measure these outcomes would need adaptations to be used with autistic adults (or if needed, wi","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251322082"},"PeriodicalIF":5.2,"publicationDate":"2025-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144224092","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring lie frequency and emotional experiences of deceptive decision-making in autistic adults.","authors":"Tiegan Blackhurst, Lara Warmelink, Amanda Roestorf, Calum Hartley","doi":"10.1177/13623613251315892","DOIUrl":"10.1177/13623613251315892","url":null,"abstract":"<p><p>Deception is a multi-faceted social behaviour that is pervasive in human communication. Due to differences in social communication and experiences, autistic and non-autistic adults may contrast in how they respond to situations that elicit deceptive decision-making. This study examined whether autistic and non-autistic adults differed in their general lie frequency, their inclination to produce different lie types, and their emotional experiences of lying. Fifty-eight non-autistic and fifty-six autistic university students matched on age and gender completed self-report measures of their general lying patterns, how often they lied in the past 24 hours, and whether they would lie across hypothetical scenarios with differing beneficiaries (self, other, group) and motivations (protective, beneficial). The groups did not significantly differ in their general lying behaviour or frequency of lies told over 24 hours. Yet, autistic adults indicated that they would be significantly less likely to lie in group scenarios and would experience increased difficulty, more guilt, and greater concerns about their believability when lying. These results advance theoretical understanding by suggesting that autistic adults' deceptive decision-making may be context-dependent. Future research may benefit from examining autistic deception across numerous social situations as more general lie frequency measures may be insensitive to nuanced population differences.Lay AbstractLying, a universal social behaviour, is frequent in everyday communication. Due to differences in social communication and experiences, autistic and non-autistic adults may react differently in situations where they must decide whether to lie or tell the truth. We investigated whether autistic and non-autistic adults differ in their general lying behaviour (e.g. how often they lie) and their likelihood of lying in a range of hypothetical social scenarios with different motivations (why people lie - to benefit or protect) and orientations (who people lie for; themselves, other, a group). We also examined participants' emotional experiences of lying and truth-telling. We found that autistic and non-autistic adults' general lying frequencies and emotional experiences were similar. However, the social scenario responses revealed that autistic adults would be less likely to lie to benefit or protect a social group they are part of. Moreover, autistic adults indicated that they would find lying more difficult across all social scenarios, experience more guilt, and would be less confident that their lie would be believed. This research highlights how autistic adults' lying may be context-dependent and considers how a reduction in the likelihood of lying for their social group could increase strain on autistic adults' social relationships.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"1612-1626"},"PeriodicalIF":5.2,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12089678/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143540000","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}