Autism最新文献

{"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}

{"title":"The impact of state policy on early autism diagnosis: A qualitative investigation.","authors":"Olivia J Lindly, Danielle Abate, Plyce L Fuchu, Jocelyn L Kuhn, Purnima S Mudnal Bharath, Sarah M Asantewaa, Emily Feinberg, Sarabeth Broder-Fingert","doi":"10.1177/13623613251336813","DOIUrl":"10.1177/13623613251336813","url":null,"abstract":"<p><p>Autism diagnosis before age three to expedite access to critical services is a public health priority in the United States. Still, the average age of autism diagnosis is 49 months with substantial variability across states. By examining policy-defined as laws, regulations, procedures, administrative actions, incentives, or voluntary practices of governments or other institutions-modifiable structural drivers of early (or late) autism diagnosis may be identified. We, therefore, sought to identify policies impacting early autism diagnosis in five states that are part of a larger initiative to improve autism diagnosis (Arizona, California, Connecticut, Massachusetts, and Pennsylvania) and those that exist nationally. We conducted semi-structured interviews from 2021 to 2023 with a purposive sample of 57 autism policy or research experts. The following four themes were identified through conventional content analysis: (1) developmental monitoring is critical; however, developmental screening policies vary within and across states; (2) myriad policy and contextual factors shape early diagnosis pathways within states; (3) early intervention by the state and community-based early childhood programs influence early autism diagnosis; and (4) persistent disparities in early autism diagnosis pathways are affected by policies. Study findings highlight the importance of advancing certain state and federal policies to increase early autism diagnosis.Lay abstractIn the United States, when children on the spectrum are diagnosed before age three, it can help them get the services they need to thrive. There are many differences between states as far as how many children are diagnosed with autism and the average age when they are diagnosed. Some work suggests these differences may be due to state polices, which include the laws and processes governments and organizations follow. Little research has tried to understand the similarities and differences between state policies related to autism diagnosis. Because of this, our study looked at how state policies impact the timing of autism diagnosis in the United States. We interviewed 57 experts in five states and nationally from 2021 to 2023. Four key themes were identified including (1) developmental monitoring often leads to screening, but there is much variation in and across states; (2) family, community, and healthcare factors shape pathways to autism diagnosis in states; (3) early intervention and education programs play a role in autism diagnosis; and (4) systematic differences in access to diagnosis services persist for certain groups of children and families such as those with limited English-speaking abilities. This study's findings point to certain state and federal policy changes or enhancements to reduce the age of autism diagnosis and ameliorate persistent disparities in autism diagnosis.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"2163-2180"},"PeriodicalIF":5.2,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12263328/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144118673","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":"'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":"The development and utilization of a diversity advisory board in an intervention to support social skill development for autistic transition-aged youth.","authors":"Ed-Dee G Williams, Matthew J Smith, Jamie Mitchell, Ty B Tucker, Connie Sung, Kari Sherwood, Sarah Dababnah, Sandy Magaña, Temple Lovelace, Shanna K Kattari, Dale Olsen, Jeff Elkins, Laura Humm, Chris Steacy, Edwina Riddle, Caleb Liggett","doi":"10.1177/13623613251330847","DOIUrl":"10.1177/13623613251330847","url":null,"abstract":"<p><p>Recent discourse has identified significant issues surrounding the lack of diversity in autism-related research. However, recent efforts have called for the regular use of diversity advisory boards (DAB) in autism-related research to improve the inclusivity of underrepresented and marginalized groups included in the growing autism scholarship. This article outlines the development and implementation of a DAB to support the design and evaluation of an innovative intervention, <i>WorkChat: A Virtual Workday.</i> Specifically, <i>WorkChat</i> focuses on improving knowledge and practicing conversational skills with virtual customers, coworkers, and supervisors to support workplace interactions for autistic transition-age youth. Here, we share guidelines for developing, utilizing, and maintaining a DAB, as well as recommended practices and future implications for implementing DABs in autism services research while using the <i>WorkChat</i> DAB as a case study. The goal is to support the further use of DABs as a means of significantly improving the inclusion of underrepresented and marginalized identities including racial, gender, and sexual minorities, and individuals with disabilities in autism services research.Lay AbstractAutism research often does not include enough people with different identities such as different races, genders, and sexualities. Sometimes, support for autistic individuals does not help everyone equally. They often work better for white, straight autistic males. This article will talk about how we are trying to make autism research more diverse. We will share how we are using a group of diverse advisors to help with research. We will also talk about how to use these advisor groups in the future for autism research.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"2016-2029"},"PeriodicalIF":5.2,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143961421","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":"Satisfaction with friendship support protects autistic youth from the negative effects of peer victimization.","authors":"Natalie Libster, Ryan Adams, Somer Bishop, Shuting Zheng, Julie Lounds Taylor","doi":"10.1177/13623613251322923","DOIUrl":"10.1177/13623613251322923","url":null,"abstract":"<p><p>Autistic youth experience higher rates of peer victimization than their non-autistic peers. While there is some evidence that friendships may protect against the negative mental health effects of peer victimization in the general population, these protective effects have not been examined in autistic youth. The current study explored whether satisfaction with friendship support is associated with depressive symptoms among autistic youth, and whether satisfaction with friendship support buffers against the negative effects of peer victimization on mental health. Autistic youth (<i>N</i> = 224) between the ages of 15 and 25 years (<i>M</i> = 18.68 years) completed questionnaires measuring frequency of peer victimization, satisfaction with friendship support, and depressive symptoms. Satisfaction with friendship support was not associated with depressive symptoms; however, the effect of peer victimization on depressive symptoms was attenuated for youth who were more satisfied with their friendship support compared to youth who were less satisfied with their friendship support. The results of the current study therefore highlight the potential for promoting mental health of autistic youth through reducing peer victimization and increasing satisfaction with peer relationships.Lay AbstractAutistic youth are more likely to be bullied than youth who are not on the autism spectrum. Youth in the general population who are bullied experience poor mental health, but those who are satisfied with their friendships may be protected from these negative outcomes. No studies have looked at how friendships affect the mental health of autistic youth who are bullied by their peers. Autistic youth completed questionnaires that asked them to report how frequently they were bullied, whether they were satisfied with the support they received from friends, and depressive symptoms they experienced. Depressive symptoms did not differ between youth who were more satisfied and youth who were less satisfied with their friendship support. However, among youth who were frequently bullied, depressive symptoms were lower for those who were more satisfied with their friendship support compared to those who were less satisfied with their friendship support. This study shows that interventions are needed to support the mental health of autistic youth by decreasing bullying by peers and increasing positive peer relationships.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"2193-2198"},"PeriodicalIF":5.2,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12255831/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143490146","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":"Healthcare providers' practices in identifying and managing constipation in autistic adults: A qualitative study of facilities across France.","authors":"Wynn Smith, Charlotte Desprez","doi":"10.1177/13623613251333829","DOIUrl":"10.1177/13623613251333829","url":null,"abstract":"<p><p>Constipation is a common comorbidity among autistic adults, yet diagnosing and managing it poses unique challenges, notably due to communication barriers and a lack of specific guidelines. The study explores the professional practices of healthcare providers (HCPs) in managing constipation among autistic adults, the symptoms they identify, their management strategies, and the sources of knowledge guiding their practices. A qualitative approach was used, involving semi-structured interviews with ten HCPs, supplemented by twelve online questionnaires. Thematic analysis revealed three overarching themes: (1) HCPs acknowledged challenges in identifying constipation in autistic patients, relying on clinical markers and behavioral cues; (2) HCPs described assessment tools and preventive strategies in managing constipation; and (3) HCPs identified challenges and strategies in managing constipation in autistic adults, adopting a collaborative approach, while exposing a lack of specific training. Findings indicate that HCPs depend on non-verbal cues and behavioral changes, such as increased agitation, irritability, and altered motor patterns, to detect constipation. Variability in treatment protocols and limited formal training underscores the need for more structured training and standardized approaches. The study suggests that improved collaboration among HCPs and with families could lead to more consistent and effective care.Lay abstractConstipation is common among autistic adults, but it can be difficult to diagnose and treat notably because of difficulties in communicating and a lack of clear guidelines. This study considered how healthcare providers (HCPs) in France handle constipation in autistic adults. The research involved interviews with ten HCPs from various medical-social facilities and 12 online questionnaires. The study found three main points: Identifying Constipation: HCPs often struggle to recognize constipation in autistic adults. They rely on physical signs and changes in behavior, such as increased agitation, irritability, and singular ways of acting. Managing Constipation: HCPs use various strategies to manage constipation, focusing on prevention, yet lack clear guidelines for assessment. Challenges and Strategies: HCPs face many challenges, including a lack of specific training. They emphasize working in multidisciplinary teams and with families to manage constipation effectively. The study highlights that better training and standardized guidelines are needed to help HCPs provide consistent and effective care. Improving teamwork among HCPs and with families can lead to better outcomes for autistic adults with constipation.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"2044-2057"},"PeriodicalIF":5.2,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143955217","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":"Co-designing a novel service delivery pathway to increase access to autism identification and care within a non-profit community organization serving culturally and linguistically diverse families.","authors":"Shana M Attar, Hannah Benavidez, Carol Gicheru, Colleen Alabi, Risho Sapano, Wendy L Stone","doi":"10.1177/13623613251335702","DOIUrl":"10.1177/13623613251335702","url":null,"abstract":"&lt;p&gt;&lt;p&gt;Culturally and linguistically diverse families experience greater challenges accessing timely, autism-specialized care relative to non-culturally and linguistically diverse families, and ultimately experience less optimal health outcomes. Alternative pathways to access autism care for culturally and linguistically diverse families are needed; however, the features of a novel pathway remain unclear. A co-design process was used with a culturally embedded non-profit community organization to develop a novel service delivery pathway for increasing access to autism services for culturally and linguistically diverse families in the United States. Twenty-three individuals participated in eight, 2-hour co-design sessions. Participants included front-line staff (seven non-specialist providers), management leaders (two program supervisors and two organization directors), and eight end-users (caregivers) from seven understudied cultural and linguistic groups (i.e. Somali Mai Mai, Swahili, Arabic, Dari/Pashto, French, Amharic, and Tigrinya) and four autism specialists. The co-design identified five key design features: respecting diversity, prioritizing caregiver agency, increasing accessibility, minimizing stigma, and maximizing feasibility. These features informed the co-development of a novel pathway to access autism identification and care for culturally and linguistically diverse families that pairs navigation services with the dissemination of brief, culturally sensitive, and evidence-based parenting and coping strategies. This power-sharing, community-academic partnership may serve as a model for improving equity in autism care.Lay AbstractEarly, specialized support is important for helping young autistic children learn and develop. However, families from different cultural backgrounds often find it challenging to access this early help. A university lab and a community organization worked together to create a new way for these families to access autism services. We used a co-design approach, which involves gathering feedback from a variety of people involved in autism care, including service providers, community leaders, caregivers, and autism experts. Twenty-three individuals participated in eight co-design sessions that were two hours each. Participants were from different language groups, including Somali Mai Mai, Swahili, Arabic, Dari/Pashto, French, Amharic, and Tigrinya. These sessions helped us identify five important factors important for improving access to needed services: being mindful about cultural differences between groups, empowering caregivers, providing information and support for accessing services, reducing stigma around autism, and ensuring the service is practical to use. Based on these factors, we developed a new pathway for families to access autism care. This new approach includes providing help in navigating the medical and educational systems and provides short, culturally appropriate advice for parenting and coping.","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"2097-2110"},"PeriodicalIF":5.2,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12263326/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143957401","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":"Autism in the context of joint hypermobility, hypermobility spectrum disorders, and Ehlers-Danlos syndromes: A systematic review and prevalence meta-analyses.","authors":"Carolina Baeza-Velasco, Judith Vergne, Marianna Poli, Larissa Kalisch, Raffaella Calati","doi":"10.1177/13623613251328059","DOIUrl":"10.1177/13623613251328059","url":null,"abstract":"&lt;p&gt;&lt;p&gt;Increasing research suggests a link between autism spectrum disorders and joint hypermobility, hypermobility spectrum disorders, and Ehlers-Danlos syndromes. However, no study systematically examined the available literature about the relationship between these conditions. A systematic literature search was conducted to identify studies (a) examining the link between autism, joint hypermobility, hypermobility spectrum disorders or Ehlers-Danlos syndrome, and (b) reporting the frequency of autism spectrum disorders in people with joint hypermobility, hypermobility spectrum disorders or Ehlers-Danlos syndrome, or vice versa. Prevalence meta-analyses were performed. Twenty articles met the inclusion criteria. Twelve studies explored joint hypermobility/hypermobility spectrum disorders/Ehlers-Danlos syndrome in autistic people. Six explored autism spectrum disorders/autistic traits in people with hypermobility spectrum disorders/Ehlers-Danlos syndrome. Two studies examined autism spectrum disorders in relatives of patients with hypermobility spectrum disorders/Ehlers-Danlos syndrome, and two explored autistic traits and joint hypermobility in non-clinical samples. Out of 15 studies examining the association between autism spectrum disorders/autistic traits and joint hypermobility/hypermobility spectrum disorders/Ehlers-Danlos syndrome, 12 reported significant results. The overall prevalence of joint hypermobility in autistic individuals was 22.3%, but it was higher (31%) when only studies assessing joint hypermobility clinically (excluding self-reports) were considered. The overall prevalence of hypermobility spectrum disorders/Ehlers-Danlos syndrome in autistic samples was 27.9%, but 39% if hypermobility spectrum disorders/Ehlers-Danlos syndrome were assessed clinically. Despite the heterogeneity of studies, these results suggest an association between autism and joint hypermobility/hypermobility spectrum disorders/Ehlers-Danlos syndrome that should be confirmed in further research.Lay abstractIncreasing research suggests a link between autism spectrum disorders (ASD) and joint hypermobility (JH), hypermobility spectrum disorders (HSD), and Ehlers-Danlos syndromes (EDS). However, no study systematically examined the available literature about the relationship between these conditions. To fill this gap, we conducted a systematic literature search to identify studies: (a) examining the link between autism, JH, HSD, or EDS, and (b) reporting the frequency of ASD in people with JH, HSD, or EDS, or vice versa. Prevalence meta-analyses were performed. Twenty articles met the inclusion criteria. Twelve studies explored JH/HSD/EDS in autistic people. Six explored ASD/autistic traits in people with HSD/EDS. Two studies examined ASD in relatives of patients with HSD/EDS, and two explored autistic traits and JH in non-clinical samples. Out of 15 studies examining the association between ASD/autistic traits and JH/HSD/EDS, 12 reported significant results.","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"1939-1958"},"PeriodicalIF":5.2,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143717789","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}