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.

Evidence is accumulating regarding an association between autism and functional neurological disorder, a common cause for a wide range of neurological symptoms affecting motor, sensory and cognitive systems. Symptoms can include paralysis, tremors, sensory disturbance, vision loss and dizziness. Functional neurological disorder exists at the complex intersection of physical and mental health, neurology and psychiatry, and body and mind. Despite a recent resurgence in clinical and scientific interest, functional neurological disorder has lagged behind other causes of neurological symptoms in research, service development and acceptance. The nature of the association between autism and functional neurological disorder remains uncertain, but several plausible mechanisms can be identified from overlapping areas of research, highlighting endogenous factors such as atypical interoception, motor function, emotional processing and sensorimotor integration, alongside exogenous influences including adversity, healthcare inequality and stigma. This review first provides an overview of functional neurological disorder through various explanatory frameworks before applying biopsychosocial, neuropsychological and computational perspectives to conceptualise its intersection with autism. It then considers how this association might be understood and explores how services could be adapted to better recognise and support autistic individuals with functional neurological disorder across the diagnostic and treatment pathway.Lay AbstractFunctional neurological disorder causes real and often disabling symptoms, such as seizures, paralysis, tremors or sensory changes, even though standard medical tests do not show physical damage to the nervous system. Research suggests that autistic people are more likely to experience functional neurological disorder than their non-autistic peers, but the reasons for this are not yet understood. This article explores why autism and functional neurological disorder might occur together. It draws on research into how the brain processes body signals (like pain or movement), handles emotions and responds to uncertainty. It also looks at life experiences that affect health, including trauma, barriers to healthcare and stigma. This article shows that both internal factors (such as differences in movement, emotional awareness and sensory processing) and external factors (such as stress, inequality and misdiagnosis) may increase the chances of functional neurological disorder in some autistic individuals. Several models are introduced to help explain how these influences might interact. Finally, this article outlines how healthcare services could better support autistic people with functional neurological disorder. It encourages functional neurological disorder services to adapt communication styles, provide appropriate adjustments and include autistic voices in research and treatment planning to improve care and outcomes.

To address the dearth of literature on outcomes for autistic individuals with significant intellectual disability, researchers require validated measures to use in research. This study examined the psychometric properties of PROMIS quality-of-life caregiver-proxy scales included in the PROMIS Autism Battery-Lifespan among autistic children who are minimally verbal and with intellectual disability (MVID). We examined basic psychometric properties of the PROMIS caregiver-proxy scales and tested the scales for measurement invariance between groups of autistic children who are minimally verbal with intellectual disability and those without signficant intellectuatl disability (N = 448). We also descriptively examined feedback from caregivers regarding the appropriateness of the questions to capture meaningful outcomes for their autistic children who are minimally verbal with intellectual disability. Results indicated that some PROMIS caregiver-proxy scales (Anger, Positive Affect, and Life Satisfaction) exhibited strong psychometric evidence and content validity, but many other scales either did not demonstrate measurement invariance between groups or included a high proportion of items endorsed by caregivers as not applicable for their minimally verbal autistic child. Our findings emphasize the need for continued work developing appropriate measures for capturing meaningful outcomes among minimally verbal autistic people with significant intellectual disability.

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.