Autism最新文献

{"title":"Consensus recommendations for usability and acceptability of mobile health autism screening tools.","authors":"Gabriella Tangkilisan, Luis Rivas Vazquez, Plyce Fuchu, Benjamin Sanders, Jill K Dolata, Steven Bedrick, Eric Fombonne, Sarabeth Broder-Fingert, Katharine E Zuckerman","doi":"10.1177/13623613251360276","DOIUrl":"10.1177/13623613251360276","url":null,"abstract":"<p><p>Mobile health (mHealth; online phone or tablet-based) screening tools for autism are being increasingly used by parents, health care, and educational providers. However, it is unclear whether mHealth autism screening will improve the inequalities in autism or further help individuals already advantaged in autism care. To try to improve equity in mHealth autism screening, we conducted a modified Delphi consensus panel process with 14 panelists who were medical providers, parents, tool developers, and educational providers. Panelists participated in three asynchronous online voting rounds followed by online discussions. Panelists were provided a preliminary list of 28 recommendations for autism-screening tools that were compiled from previous qualitative interviews in the larger project. In each round, panelists were asked to vote for up to 10 recommendations from the preliminary list and discuss the voting results. After the third round of asynchronous voting, a final round of discussion with all the panelists was held live through Zoom to discuss the final asynchronous voting results. All voting and discussion took place on an online app called Slack. Voting and discussion yielded 19 recommendations in five conceptual categories: transparency, equity, access, product design and user experience, and development process. Tools adhering to these recommendations may increase equitable service use after screening.Lay abstractFamilies may use information online to learn more about autism. Families, health care, and educational providers may use online tools like checklists or web apps to screen for autism (measure whether a young child has autism symptoms or behaviors). However, we do not know whether the online autism-screening tools can be easily used by families and providers. It is possible that families who are culturally diverse, have lower education, or have lower income have trouble using online autism-screening tools. We conducted an online consensus panel with medical/educational providers, parents, and tool developers, asking them to vote and have discussions on suggestions for online screening tools for autism. The voting and discussions resulted in 19 suggestions for changes to make the tools easier to use. The top recommendations included directly linking to sources of information about autism, reading level that is less than or equal to fifth grade, and focusing on the diverse behavior/needs/strengths associated with autism.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251360276"},"PeriodicalIF":5.6,"publicationDate":"2025-08-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12411648/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144820455","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}

{"title":"Perspectives and experiences of physical activity among autistic adults in middle adulthood.","authors":"James McLeod, Martin Roderick, Mary Hanley, Deborah M Riby, Patrick Jachyra","doi":"10.1177/13623613251360862","DOIUrl":"https://doi.org/10.1177/13623613251360862","url":null,"abstract":"<p><p>Physical activity (PA) participation among autistic adults is low; however, it is unclear why this is the case. To date, little research has included the perspectives of autistic adults during middle adulthood to understand how to support their PA and to understand the complexity of their daily lives. Seventeen autistic adults aged 36-59 years participated in two online, semi-structured interviews (<i>N</i> = 34). Reflexive thematic analysis was used to analyze the data, and the socio-ecological model was applied to interpret the themes. Reflexive notes (<i>N</i> = 34) made during the research process also were analyzed to support the rigour of the interpretations. Neuro-normative assumptions about autism and PA, the importance of trust and sensory sensitivities shaped PA participation for these autistic adults. The <i>new</i> concept of neuro-normative assumptions highlights how pervasive assumptions were damaging, made it difficult to build trust and decreased the predilection of PA participation. This article delivers original and significant knowledge and calls on the field to co-produce neurodivergent-informed PA practices that are reflective of the lives, needs and abilities of autistic adults. We conclude the article by highlighting how a trauma-informed approach may have potential value in building trust and supporting autistic adults in PA.Lay Abstract<i>What is already known?</i> Autistic adults experience barriers to participating in physical activity (PA), and their rates of participation are low. This is a problem because PA participation can contribute many health and well-being benefits. There is a need for research to better understand how to support their PA participation. Working directly with autistic adults is of utmost importance as minimal research has directly included their perspectives.<i>What this article adds</i>: Seventeen autistic adults from the United Kingdom participated in two online semi-structured interviews (<i>N</i> = 34). Interview data were accompanied by reflexive notes which were a way for the research team to provide preliminary analyses and think about the data during the research process (<i>N</i> = 34). Together, interview transcripts and memos were analyzed to generate themes across the interview transcripts. We used the socio-ecological model to examine the different components that impact PA participation. The study highlights how neuro-normative assumptions about PA, trust and sensory sensitivities shaped PA participation for autistic adults. A lack of understanding and knowledge among movement professionals about autism, their needs, interests and abilities and trust significantly impacted participation. Assumptions and limited understandings about autism limited participation, as the forms of PA available often were not suitable to the diverse needs, interests and abilities of autistic adults.<i>Implications for practice, research or policy:</i> The insights highlight the importance of co-p","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251360862"},"PeriodicalIF":5.6,"publicationDate":"2025-08-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144820457","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":"\"It fostered a greater appreciation for my little corner of the world\": A feasibility study of a therapeutic photography intervention for the well-being of autistic youth.","authors":"Marina Charalampopoulou, Alaa Ibrahim, Heather Prime, Nicole Eddy, Larissa Panetta, Heather Brown, Shital Desai, Kylie Gray, Meng-Chuan Lai, Peter E Langdon, Yona Lunsky, Carly McMorris, Paul Ritvo, Kate Tilleczek, Ami Tint, Jonathan A Weiss","doi":"10.1177/13623613251359196","DOIUrl":"10.1177/13623613251359196","url":null,"abstract":"<p><p>Research and intervention efforts for autistic people have disproportionately focused on negative mental health. This has resulted in a shortage of interventions addressing the promotion of positive emotional (hedonic) and psychological (eudaimonic) states. Therapeutic photography, which refers to self-initiated photo-taking paired with mindful reflections of the photographs, has the potential to provide an accessible and scalable approach to promote positive mental health for autistic people. This study employed a mixed-methods design to investigate the development and feasibility of a novel therapeutic photography intervention intended to promote hedonic and eudaimonic well-being among autistic youth. Forty-one autistic youth between 16 and 25 years of age were recruited. Findings indicated that therapeutic photography was a feasible intervention in terms of demand, implementation, acceptability, and practicality. There was also preliminary evidence suggesting that therapeutic photography may be a promising intervention for the promotion of different aspects of hedonic and eudaimonic well-being. Suggestions for future intervention adaptations to better address the needs of autistic youth are also featured.Lay Abstract<b>Using Photography to Increase the Well-Being in Autistic Youth</b>Past research has mostly focused on the challenges and negative mental health experiences of autistic young people, leading to a lack of strategies aimed at increasing positive emotions and experiences. To address this gap in the literature, we developed a therapeutic photography intervention that aimed to increase positive aspects of well-being for autistic youth. With the help of two autistic advisors, we recruited 41 autistic people, between the ages of 16 and 25 years, and asked them to take photos of positive experiences and write short reflections about their photos, for the duration of 4 weeks. We then asked participants about the benefits and challenges of the intervention. We also asked participants about any challenges they had in engaging with therapeutic photography and any changes and additional supports they would recommend for the intervention. Our results showed that autistic young people found the intervention to be interesting, doable, acceptable, and practical. We also found some evidence for the potential benefits of the intervention for the well-being of autistic youth. Participants had different ideas for adapting the design of the intervention to better meet the needs of autistic youth in the future.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251359196"},"PeriodicalIF":5.6,"publicationDate":"2025-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144783370","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":"Clinical correlates of errors in machine-learning diagnostic model of autism spectrum disorder: Impact of sample cohorts.","authors":"Yen-Chin Wang, Chung-Yuan Cheng, Chi-Shin Wu, Chi-Chun Lee, Susan Shur-Fen Gau","doi":"10.1177/13623613251360271","DOIUrl":"https://doi.org/10.1177/13623613251360271","url":null,"abstract":"<p><p>Machine-learning models can assist in diagnosing autism but have biases. We examines the correlates of misclassifications and how training data affect model generalizability. The Social Responsive Scale data were collected from two cohorts in Taiwan: the clinical cohort comprised 1203 autistic participants and 1182 non-autistic comparisons, and the community cohort consisted of 35 autistic participants and 3297 non-autistic comparisons. Classification models were trained, and the misclassification cases were investigated regarding their associations with sex, age, intelligence quotient (IQ), symptoms from the child behavioral checklist (CBCL), and co-occurring psychiatric diagnosis. Models showed high within-cohort accuracy (clinical: sensitivity 0.91-0.95, specificity 0.93-0.94; community: sensitivity 0.91-1.00, specificity 0.89-0.96), but generalizability across cohorts was limited. When the community-trained model was applied to the clinical cohort, performance declined (sensitivity 0.65, specificity 0.95). In both models, non-autistic individuals misclassified as autistic showed elevated behavioral symptoms and attention-deficit hyperactivity disorder (ADHD) prevalence. Conversely, autistic individuals who were misclassified tended to show fewer behavioral symptoms and, in the community model, higher IQ and aggressive behavior but less social and attention problems. Error patterns of machine-learning model and the impact of training data warrant careful consideration in future research.Lay AbstractMachine-learning is a type of computer model that can help identify patterns in data and make predictions. In autism research, these models may support earlier or more accurate identification of autistic individuals. But to be useful, they need to make reliable predictions across different groups of people. In this study, we explored when and why these models might make mistakes-and how the kind of data used to train them affects their accuracy. Training models means using information to teach the computer model how to tell the difference between autistic and non-autistic individuals. We used the information from the Social Responsiveness Scale (SRS), which is a questionnaire that measures autistic features. We tested these models on two different groups: one from clinical settings and one from the general community. The models worked well when tested within the same type of group they were trained. However, a model trained on the community group did not perform as accurately when tested on the clinical group. Sometimes, the model got it wrong. For example, in the clinical group, some autistic individuals were mistakenly identified as non-autistic. These individuals tended to have fewer emotional or behavioral difficulties. In the community group, autistic individuals who were mistakenly identified as non-autistic had higher IQs and showed more aggressive behaviors but fewer attention or social problems. On the contrary, some non-autistic peop","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251360271"},"PeriodicalIF":5.6,"publicationDate":"2025-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144783371","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":"Parental distress, marital satisfaction, and functional impairments in autistic children: A family perspective from Türkiye.","authors":"Nazlı Özoğuz, Mustafa Balkanas, Mahmut Cem Tarakçıoğlu","doi":"10.1177/13623613251362263","DOIUrl":"https://doi.org/10.1177/13623613251362263","url":null,"abstract":"<p><p>This study investigates the relationships between family dynamics, parental psychological distress, and functional impairment in Turkish autistic children. We recruited 100 families, including children aged 6-12 years diagnosed with autism and their parents. Autism severity was measured using the Childhood Autism Rating Scale. Parents completed validated tools, including the Brief Symptom Inventory and Weiss Functional Impairment Rating Scale-Parent Form, while mothers also completed the Multidimensional Perceived Social Support Scale and Marital Adjustment Test. Mothers reported higher functional impairment in their children (M = 0.90, SD = 0.50) than fathers (M = 0.82, SD = 0.46, p = 0.020). Maternal distress was significantly associated with greater functional impairment (β = 0.242, p = 0.028), while stronger marital relationships were linked to lower levels of impairment (β = -0.323, p = 0.001). Autism symptom severity and comorbid conditions were not significantly associated with functional impairment. These findings suggest that maternal mental health and marital satisfaction are related to functional impairments in autistic children. While fathers often have less direct caregiving roles, their supportive presence may also be important. These findings highlight the need for longitudinal studies to clarify whether reducing caregiver stress and supporting family resilience are linked to improved outcomes in autistic children.Lay AbstractRaising autistic children presents unique daily challenges for families. This study explored how family relationships and parents' mental health are linked to the daily functioning of autistic children in Türkiye. We included 100 families with children aged 6-12 years who had been diagnosed with autism. Mothers often reported more challenges in their child's daily life compared to fathers. Higher levels of maternal stress were associated with greater difficulties in children's daily functioning. In contrast, stronger and more supportive marriages were associated with fewer reported challenges. These results suggest that family dynamics and caregiver well-being are closely related to how autistic children experience daily life. Supporting parental mental health and strengthening family relationships may help promote better outcomes for autistic children and their families.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251362263"},"PeriodicalIF":5.6,"publicationDate":"2025-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144783372","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":"What are we targeting when we support inclusive education for autistic students? A systematic review of 233 empirical studies and call for community partnerships.","authors":"Valentine Perrelet, Aline Veyre, Léa Chawki, Claire Margot, Émilie Cappe","doi":"10.1177/13623613251352223","DOIUrl":"https://doi.org/10.1177/13623613251352223","url":null,"abstract":"&lt;p&gt;&lt;p&gt;Interventions to support mainstream schooling for autistic students involve multiple complex considerations. This systematic review, following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses standards, aimed to describe inclusive education interventions, their outcomes, and the tools used to measure the outcomes. A total of 233 experimental studies were included in the review. Subsequent result interpretation was performed using a participatory approach. To this end, a group of consultants comprising lived experience experts participated in two consultation sessions. Most studies were randomized controlled trials, single-case experimental design studies, or other quasi-experimental design studies. The social interactions and social skills of autistic students were the most frequently targeted outcomes. Cognitive-behavioral interventions were the predominant intervention type. A wide, heterogeneous set of standardized instruments was used to measure outcomes, indicating a lack of consensus on how to measure school inclusion and participation. The most used measurement tools assessed core autism symptoms, intelligence quotient, and adaptive behaviors. Approximately half of the studies failed to measure implementation considerations. Participatory interpretation of the results through consultation sessions with lived experience experts enabled the highlighting of interactive processes and considerations involved in inclusive education.Lay abstractMultiple complex considerations are involved in supporting mainstream schooling for autistic students. This systematic review aimed to describe inclusive education interventions and outcome measures for autistic students. A total of 233 experimental studies were analyzed. Furthermore, consultation sessions with autistic people, parents, and inclusive education professionals were organized to enable in-depth interpretation of the results using a participatory approach. Cognitive-behavioral interventions were the most common intervention type in the international scientific literature, and social interactions of autistic children were the most frequently targeted outcomes. A lack of consensus on how to measure school inclusion and participation was found. Although some studies considered perspectives on the acceptability of interventions, most of them failed to evaluate implementation aspects. The lived experience experts highlighted tensions between the systematic review findings and the practical realities of inclusive education; this led to discussions about the possible application of the United Nations' definition of inclusion. Overall, empirical research supporting the inclusion of autistic students aligns more closely with the concept of integration, which requires students to adapt to the school context. The focus of inclusion has been shifting from minimizing the unique traits of students with special needs to adapting the environment for them to take a greater part in sc","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251352223"},"PeriodicalIF":5.6,"publicationDate":"2025-08-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144774601","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":"'Am I gonna regret this?': The experiences of diagnostic disclosure in autistic adults.","authors":"Sheena K Au-Yeung, Megan Freeth, Andrew R Thompson","doi":"10.1177/13623613251337504","DOIUrl":"10.1177/13623613251337504","url":null,"abstract":"<p><p>An increasing number of people receive autism diagnoses in adulthood, and there are few studies investigating autistic adults' experiences of disclosing their diagnosis. This study sought to understand autistic adults' experiences of diagnostic disclosure using interpretative phenomenological analysis. Twelve autistic adults, who received their diagnosis in adulthood, participated in one-to-one semi-structured interviews exploring their experiences of diagnostic disclosure. Quality control and reflexivity procedures were used to ensure rigour. Four group experiential themes and nine subthemes emerged: (1) 'Functions of Disclosure' (subthemes: i. Accessing Support; ii. Becoming Myself; iii. Activism and its Burden); (2) 'Approaching the Conversation' (Subthemes: i. Managing Disclosure and Reactions; ii. Disclosure Started Pre-Diagnosis; iii. Impact on Others); (3) 'Negative Effects of Preconceptions' (Subthemes: i. Disbelief and Imposter Syndrome; ii. Not Having My Needs Met; iii. Caution and Avoidance), and (4) 'Acceptance, Openness and Finding Community'. Disclosure served multiple functions for the autistic participants. There was variability in the support that autistic participants received in preparation for disclosing the diagnosis. More consistent post-diagnostic support is required to engage newly diagnosed autistic adults in considering the practicalities and potential consequences of disclosure, its benefits and challenges.Lay SummaryAn increasing number of people are receiving diagnoses of autism in adulthood. However, there are few studies investigating autistic adults' experiences of 'disclosure', that is, telling others about their autism diagnosis. The aim of this study is to understand autistic adults' experiences of telling other people that they are autistic after receiving a diagnosis during adulthood. Twelve autistic adults were interviewed about their experiences of disclosure. The interviews showed that autistic people disclose to access support, be themselves and to help others. To disclose, autistic people had to make decisions about what information to share and how to handle people's reactions. Some people started telling others about their potential diagnosis before being formally diagnosed. Disclosure has an impact on people receiving the news of disclosure. Many autistic people experienced not being believed, resulting in unmet needs. This led them to be more careful about future disclosure. However, disclosure also led to some positive experiences, where autistic people felt listened to and accepted by those they disclosed to. This led to receiving support and feeling part of a community. It is recommended that clinicians and autism service providers include discussions about disclosure as part of routine post-diagnostic support.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"2181-2192"},"PeriodicalIF":5.2,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12255832/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143960858","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}

{"title":"A Randomized Trial of Caregiver-Mediated Function-Based Elopement Treatment for Autistic Children.","authors":"Mindy Scheithauer, Joanna Lomas Mevers, Lawrence Scahill, Sarah Slocum Freeman, Colin Muething, Chelsea Rock, Scott Gillespie, Laura Johnson, Nathan Call","doi":"10.1177/13623613251330388","DOIUrl":"10.1177/13623613251330388","url":null,"abstract":"<p><p>Elopement is a common and dangerous behavior among autistic children. Behavioral treatments can reduce elopement, but most evidence comes from small-N evaluations in specialized settings with strategies varying across studies. The current study compared the efficacy of the caregiver-mediated function-based elopement treatment to parent education program (PEP) in a 16-week randomized clinical trial of 76 autistic children (age = 4-12 years). Function-based elopement treatment involves 12 weekly appointments aimed at improving safety, identifying the function of elopement, and implementing subsequent function-based treatment strategies. No group differences were observed on the Aberrant Behavior Checklist-Hyperactivity (primary outcome). Significant improvement from baseline to endpoint in function-based elopement treatment compared to parent education program participants was observed for secondary outcomes, including caregiver ratings of safety measures (<i>p</i> < 0.01), severity of elopement based on the Elopement Questionnaire (<i>p</i> < 0.01), and caregiver-collected data on elopement (<i>p</i> < 0.01). The Clinical Global Impression-Improvement Scale (CGI-I) rated by a treatment-blind evaluator found 31.6% of function-based elopement treatment participants improved compared to 2.6% in parent education program (<i>p</i> = 0.001). Improvements were maintained at a 28-week follow-up. Attrition was 5.26%, and no significant adverse events were deemed related to treatment. Function-based elopement treatment was superior to parent education program on elopement-specific outcomes and appears safe and acceptable.Lay AbstractMany autistic children exhibit wandering or running away from supervision (i.e. elopement), which can include leaving the house in the middle of the night or getting lost from a parent in a crowded location. Elopement can result in injury when the child is not supervised and is incredibly stressful for parents. Research suggests that behavioral intervention can help with elopement. However, most studies include only a few children. In addition, treatment strategies differ across studies, making it difficult to compare outcomes. The function-based elopement treatment has compiled strategies across different studies to build a 12-session treatment manual that can be followed by clinicians. The manual guides the therapist on the delivery of parent-training strategies to improve the child's safety and reduce elopement. We compared function-based elopement treatment to a control condition where parents met weekly with a clinician for more general parent training. Children whose parents received function-based elopement treatment showed greater improvement in elopement than children whose parents received more general parent education. This result suggests that the treatment works. Further study is needed to move function-based elopement treatment into clinical practice.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"1973-1986"},"PeriodicalIF":5.2,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143778786","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":"Demographic, ecological and social predictors of quality of life among parents of autistic children: A multi-centre cross-sectional study.","authors":"Raghad AbdulKareen Abdoun Al-Janabi, Zainab Ali Saleem, Faris Lami, Osamah Abbas Jaber, Shatha Mohammed Jasim, Nahid Dehghan Nayeri, Mahdi Shafiee Sabet, Ghaith Al-Gburi","doi":"10.1177/13623613251334166","DOIUrl":"10.1177/13623613251334166","url":null,"abstract":"<p><p>Parents experience lower quality of life due to the psychological, financial and social challenges of caring for an autistic child. This study aims to identify the independent demographic and social predictors of parents' quality of life, to allocate support to parents who truly need it. Al-Subtain Academy and Baghdad's National Center for Autism recruited 248 parents in a cross-sectional study from 3 January to 13 September 2024. Demographics, quality of life and social support were assessed using a structured self-administered questionnaire. Multiple linear regression models were significant for all domains except role functioning (p = 0.258). The explained variance ranged from 50.8% for health perception to 19.5% for physical functioning. Mothers reported lower health perception and physical functioning than fathers (p = 0.015, p < 0.001). Parents with chronic condition also reported lower health perception, mental health, social functioning and higher pain scores (p-values: <0.001, 0.029, 0.023, 0.014). In addition, parents of female children and those with comorbidities reported lower mental health (p-values: 0.018, 0.004). Marital satisfaction was positively associated with all domains except pain (negative association) and physical/role functioning (no association). In conclusion, mothers, younger parents, parents with chronic conditions or female children, or whose children have comorbidities should be prioritised during interventions that promote family functioning and social support.Lay AbstractParents can face emotional and social challenges when taking care of autistic children, which can lower their quality of life. These challenges do not affect all parents in the same way. That is why we need to find out which parents are having more trouble, so that we can give more support to those who need it the most. Our goal was to identify which background and social factors are linked to lower quality of life in parents of autistic children. First, we found that parents of autistic children have lower mental and social well-being than physical quality of life. We argued that the type of challenges faced by parents might be the cause. We also detected lower quality of life among mothers, younger parents, parents with long-term conditions or autistic daughters, or whose children have other conditions besides autism. Finally, we found that marital satisfaction was the most important element in social support. Marital satisfaction is linked to a better quality of life in all areas except being able to do normal daily tasks and physical activities.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"2058-2071"},"PeriodicalIF":5.2,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143953175","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":"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":"1998-2015"},"PeriodicalIF":5.2,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12255847/pdf/","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":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}