Autism最新文献

Autistic advocates have raised substantial concerns regarding genetics research on autism. It is yet unclear whether these concerns reflect the perspectives of the broader autism community. In a sample of 1757 Dutch autistic adults, 445 parents of autistic children and 126 legal representatives of autistic adults, we explored perspectives on genetics research. We used a pilot repeated survey, consisting of questions about the perceived importance of the heritability of autism, reasons for this importance and the desire to learn more about heritability. Over 95% of the participants found it at least a little important to know that autism is highly heritable, and 67% would like to learn more about it. Participants mentioned that they find it important to increase knowledge about the causes of autism, and to improve the diagnostic process. There were no substantial differences in perspectives between stakeholder groups. Contrasting previous work, this pilot study indicates support for genetics research in autism, which highlights diversity in community perspectives. It also identifies an unmet educational need. We conclude that education on the topic of genetics, active research involvement of the autism community, and an ongoing dialogue between all parties are crucial to ethically and meaningfully move autism genetics forward.Lay abstractSome autistic people have shared strong concerns about research on the genetics of autism. However, this has not been investigated systematically in a large and diverse group of stakeholders. Therefore, researchers asked questions to over 1700 autistic adults in the Netherlands, 445 parents of autistic children and 126 legal guardians of autistic adults. The questions were (a) 'is it important to know that autism is heritable?', (b) 'why is this important to know?' and (c) 'would you want to learn more about the heritability of autism?'. Over 95% of the people said it is at least a little important to know that autism is heritable. Around 67% also said they would like to learn more about it. Many people said that learning about the genetics of autism could help us understand the causes of autism better and could help improve the diagnostic process. This study shows that there are different opinions about genetics research. It was also noted that people need clear and simple information about autism genetics. To make autism genetics research better and more respectful, it is important to give clear information about genetics, to involve autistic people and their families in research, and to have open conversations between researchers and the autism community. This way, autism genetics research can move forward in a way that is fair and helpful for everyone.

Despite their relevance to outcomes in autism, little is known about how social drivers of health affect communication, especially in transition-aged autistic adolescents and young adults with structural language impairment. This knowledge gap limits our understanding of developmental trajectories and the ability to develop supports. This cross-sectional study examined the role of social drivers of health in the communication abilities of autistic individuals ages 13-30. Participants (N = 73) completed language, nonverbal cognitive assessments, and social drivers of health (sense of community, unmet services, barriers to services) measures. Data were analyzed descriptively and using mixed-effects modeling. More unmet service needs, more barriers to services, and a lower sense of community were associated with greater social communication impairment. In turn, both unmet service needs and barriers to services were negatively associated with functional communication. In regression modeling, language scores contributed to functional communication, and sense of community to social communication impairment. Findings support the relevance of language and social drivers of health in communication. Future work should focus on possible bidirectional relationships between these variables and explore and real-world translation.Lay AbstractWhere people live, work, and spend their time is important. Environments can have more or less services or differ in how much they help people feel like they belong to their community. These parts of the environment are called social drivers of health. Social drivers of health are important for outcomes in autism, but we do not know much about them in autistic teens or young adults. We recruited 73 autistic teens and young adults (ages 13-30 years) and 52 caregivers to our study. Autistic teens and young adults did language and NVIQ tests on Zoom. Autistic teens, young adults, and caregivers also answered questionnaires. Sense of community was important for social communication impairment, and language was important for real-world communication. These findings tell us two things. First, thinking about how to create supportive communication environments for autistic teens and adults is important. Second, understanding how social drivers of health shape outcomes is important. In the future, we should focus on how improving environments can help autistic teens and adults meet their communication goals.

Applied behavior analysis is a widely used intervention for autistic youth, though its mental health impacts remain under-researched. This study aims to investigate the association between applied behavior analysis therapy and post-traumatic stress disorder, suicidality, mental health hospitalization rates, and length of mental health hospitalizations using a national database of privately insured youth under 18. We matched 17,120 autistic youth who received applied behavior analysis with a control group of autistic youth with no record of applied behavior analysis and clustered them into four applied behavior analysis dose groups using two-stage bisecting k-medians clustering. Then, we used negative binomial regression and logistic regression to compare outcomes for the applied behavior analysis and non-applied behavior analysis groups. Overall, applied behavior analysis receipt was associated with 30% higher odds of experiencing a mental health hospitalization (odds ratio = 1.30, p < 0.001) and a 32% higher incidence rate of these hospitalizations (incidence rate ratio = 1.32, p < 0.001). Our analysis found no relationship between applied behavior analysis dosing and the other tracked mental health outcomes. These results indicate the need for more quantitative analysis with more comprehensive records of applied behavior analysis receipt to fully investigate claims of ABA resulting in adverse adult mental health outcomes.Lay abstractAutistic youth often receive applied behavior analysis (ABA) therapy, but some autistic adults who had ABA as youth say it harmed their mental health as adults. We looked at the relationship between ABA and post-traumatic stress disorder (PTSD), suicidality, mental health hospitalization rates, and length of mental health hospitalizations among autistic youth. We used private health insurance claims data to look at how ABA receipt was related to those mental health outcomes. We divided autistic youth into groups based on how much ABA they received, so we could see if different amounts of ABA had different associations with mental health. There were 17,120 autistic youth in the group that did not receive ABA, and 17,120 autistic youth in the group that did receive ABA. In this sample, ABA therapy was associated with a greater use of acute mental health services; autistic youth in the ABA group had an overall risk that was 30% higher for mental health hospitalizations; and a 32% greater frequency of mental health hospitalizations. These results suggest that there may be a relationship between mental health hospitalizations and getting ABA. However, more work is needed to fully understand the impact of ABA therapy on mental health outcomes.

Research on ageing in autism has sharply increased following a number of influential publications that highlighted the lack of knowledge in this area. However, much of the research on autism ageing has inadvertently treated all people aged over 50 as a homogeneous 'older adult' group, overlooking important distinctions between midlife (40-64 years) and old age (65+ years). Midlife is marked by complex role management, career pressures, health changes and identity development, while old age often involves retirement, shifts in priorities, physical and cognitive changes, and planning for less independent living. Recognising midlife and old age as distinct life phases is essential to accurately characterise the lived experiences and needs of autistic adults across the latter part of the lifespan. This letter makes conceptual and methodological suggestions that autism researchers should align with established ageing frameworks by labelling samples accurately, using appropriate keywords and, where possible, stratifying analyses by age subgroup. Doing so will enhance research accuracy, improve indexing and increase clinical relevance. This shift is vital for advancing autism ageing research and ensuring findings reflect the diverse experiences of autistic adults throughout later life.Lay AbstractResearch on autism and ageing has increased a lot in recent years. However, many studies group everyone over the age of 50 as part of the same 'older adult' group. This overlooks the fact that people in midlife (ages 40-64) and those in old age (65 and older) often face very different experiences, challenges and opportunities. Recognising that midlife and old age are separate stages of life is important for understanding what autistic adults go through as they age. This letter encourages autism researchers to be more specific when describing age groups in their studies. By doing this, research on autism and ageing will be more accurate, easier to find and more useful for researchers, healthcare professionals and autistic people alike.

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 AbstractUsing Photography to Increase the Well-Being in Autistic YouthPast 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.

This review aimed to map the literature surrounding strengths-based approaches in studies with autistic adolescents focusing on adult transition outcomes, by describing the active ingredients of interventions and the properties of assessment tools. Relevant databases were searched for articles surrounding strengths-based practices, which met the following criteria: (a) written in English, (b) published since 1990, and (c) involving adolescent participants with a diagnosis of autism spectrum disorder. Data extraction included sample, aim, intervention description, outcome measures, and results. Data were synthesised using a descriptive approach and thematic analysis was conducted to identify active ingredients, practice strategies, outcomes, and assessment properties. Overall, 35 articles met the inclusion criteria, including 26 studies evaluating strengths-based interventions and 9 articles relating to general transition outcomes. Five types of interventions were classified according to their active components: transition planning, employment preparation and training, technology programmes, peer mentoring, and cognitive skills training. The best practice themes highlighted the importance of leveraging each individual's interests and skills, developing individualised processes, and accommodating participant's needs through a holistic approach. Analysis of the outcome measures highlighted a gap in standardised strengths-based assessments, but uncovered primary outcome themes of self-determination, social skills, confidence, and work-related skills.Lay abstractThis review explores research on strengths-based approaches for autistic adolescents, particularly focusing on outcomes related to transitioning into adulthood. The goal was to identify and describe the key components of strengths-based interventions and assessment tools. The review looked at studies published since 1990 that involved adolescents with a diagnosis of autism spectrum disorder and included a variety of approaches aimed at promoting positive adult outcomes. After analysing 35 relevant articles, the review categorised five types of interventions based on their key components: transition planning, employment preparation, technology programmes, peer mentoring, and cognitive skills training. The review also identified fewer strengths-based measures than expected, with many studies employing custom measures. This points to a gap in reliable strengths assessments for autistic adolescents, which would be useful in transition planning and improving self-image. Despite the lack of standardised tools, the review highlighted several common strengths-based outcomes, such as improvements in self-determination, social skills, confidence, and work-related skills.