Autism最新文献

Lay abstract: Children with neurodevelopmental conditions like autism and attention deficit hyperactivity disorder may experience eating difficulties and related health issues later in life. Sharing family meals can help prevent these issues developing, but most studies have looked at families with neurotypical children. Our goal was to learn more about how families of children with autism, attention deficit hyperactivity disorder and both conditions (autism + attention deficit hyperactivity disorder) experience mealtimes. We developed an online survey asking caregivers about their child's eating, mealtime experience and if they experienced stress. We tested it with nine caregivers and made improvements based on their feedback before recruiting 351 caregivers to complete the main survey. We found that families of children with neurodevelopmental conditions experienced greater food fussiness, emotional undereating, 'problematic' child mealtime behaviours, dietary concerns, higher stress for caregivers and spouses and less frequent conventionally structured mealtimes compared to those without these conditions. Families of children with attention deficit hyperactivity disorder and autism + attention deficit hyperactivity disorder reported greater appetite, 'problematic' mealtime behaviours and increased stress for caregivers and spouses compared to families of children with autism. Meanwhile, families of children with autism and autism + attention deficit hyperactivity disorder reported less enjoyment of food and less structured mealtimes compared to those with attention deficit hyperactivity disorder. Our findings highlight that families of children with neurodevelopmental conditions, particularly those with autism + attention deficit hyperactivity disorder, have different mealtime experiences and eating behaviours compared to those with neurotypical children. These families may benefit from support at mealtimes. Learning why people do or do not participate in shared family meals will be crucial to developing improved mealtime support in the future.

Lay abstract: Health-related quality of life reflects a person's perspective on their well-being in physical, mental, social, work-related, and other aspects of health or life. Autistic adults typically report difficulties in many or all of these domains and, thus, often experience their health-related quality of life being reduced. Nonetheless, they do not obtain the professional support they need and report barriers to accessing or receiving appropriate healthcare. We know little about the impact of barriers to healthcare on health-related quality of life in autistic adults. In the present study, 311 autistic adults without intellectual disability in Germany completed an online survey on their current health-related quality of life and the number of barriers to healthcare they experience. In addition, they were asked about their personal and clinical background as well as about the amount of healthcare and support they recently received. We investigated how this information and, particularly, barriers to healthcare explained variations in individual levels of health-related quality of life. We found that barriers to healthcare, compared to most other variables, were a strong predictor of health-related quality of life: The more barriers autistic adults reported, the lower their experienced psychological and physical well-being. To our knowledge, this is the first paper to examine the relationship between barriers to healthcare and health-related quality of life in autism. Our results suggest that healthcare providers need to become aware of the barriers individuals with autism have in seeking and getting healthcare. Improved access to services might contribute to better health-related quality of life in autistic adults.

Lay abstract: Autistic people face many barriers to receiving an autism diagnosis. Often, they may be misdiagnosed with borderline personality disorder instead. For our study, we interviewed 10 autistic adults who had previously been diagnosed with borderline personality disorder. This helped us to better understand their experiences. They explained how borderline personality disorder is quite stigmatised and may suggest that people are to blame for their differences in behaviour. They found the treatments they had to try for borderline personality disorder to be harmful. For example, these treatments promoted 'masking'. Previous research showed that masking can be harmful for autistic people, linking it to risk of suicide. This diagnosis also led to healthcare professionals neglecting them and discounting their beliefs. Once they were diagnosed with borderline personality disorder, it was hard to access an autism assessment. When they did receive their autism diagnoses, this was much more positive. This diagnosis was validating. It also improved their mental health, as they were no longer expected to mask - their differences were now accepted. They still felt that autism was stigmatised in society. However, this was very different to the stigma around borderline personality disorder. They felt autism stigma was more about their competence as people, whereas borderline personality disorder stigma was about how they were broken and might be harmful to others. This study is important because it allows their stories to be heard by researchers and healthcare professionals alike. Adding their voices helps to humanise them, promoting positive change in mental health services. More research is now needed.

Lay abstract: More adults than ever before are seeking an autism diagnosis in adulthood. While receiving a diagnosis may be beneficial, many autistic people struggle to navigate their new diagnosis, and require support. This study conducted a systematic review of previous research on the support available after diagnosis (post-diagnostic support) for autistic adults without intellectual disability who were diagnosed in adulthood in the UK. A systematic review is a pre-planned method of searching for all relevant studies, before combining these to answer a larger question. The study aimed to investigate the availability of such support and its effectiveness, and to explore autistic adults' experiences of accessing support. We also used publicly available information to create a map of the post-diagnostic support services currently available across the UK. A systematic search of seven databases was conducted, to identify UK-based studies published after 2012. Nineteen studies were eligible to be included in the study. Although some form of post-diagnostic support is available across most areas in the UK, this mostly consists of providing information and 'signposting' the person to other services. These options may not meet the needs of autistic people, who want services such as psychoeducation (therapy whereby an individual receives education about their diagnosis to improve understanding and self-management), and peer support. Findings highlight the need for adequate support to alleviate the post-diagnostic challenges autistic adults face. The study could not evaluate the effectiveness of support options in the UK due to a lack of information about this in published research. Research shows that autistic adults would like low-level support services, psychoeducation, and peer support, and may also prefer autistic-led support. Further research is required to develop and evaluate post-diagnostic support programmes which include these elements.

Lay abstract: Atypical vocal imitation has been identified in English-speaking autistic individuals, whereas the characteristics of vocal imitation in tone-language-speaking autistic individuals remain unexplored. By comparing speech and song imitation, the present study reveals a unique pattern of atypical vocal imitation across speech and music domains among Mandarin-speaking autistic individuals. The findings suggest that tone language experience does not compensate for difficulties in vocal imitation in autistic individuals and extends our understanding of vocal imitation in autism across different languages.

Lay abstract: Autistic mothers may experience unique challenges when accessing maternity care. A better understanding of the experience of autistic mothers and maternity care professionals would help to create opportunities to support better maternity care. In this study, we interviewed autistic mothers and professional midwives, living and working across the United Kingdom and Ireland. In the interviews, the autistic mothers recalled challenges they faced in the hospital settings, difficulties in communicating their needs, and distress when being physically examined. The midwives we interviewed brought their personal experiences of autism (some were autistic themselves, while others had autistic family members) and made efforts to accommodate autistic mothers where possible. This included paying attention to potential sensory issues, trying to establish a relationship with the mothers and communicating what was going on without medical jargon. However, the midwives were limited in their ability to fully attend to the needs of autistic mothers due to time and resource restraints. Both the midwives and autistic mothers felt that midwife-led births were more attentive to the needs of mothers. Based on our findings, we recommend further training and awareness on autism in midwifery and suggest that changes relating to sensory and communication challenges would benefit both autistic and non-autistic. Our study provides important insight into this experience of maternity care from two perspectives and emphasises the need for greater inclusivity in maternity care services.

Lay abstract: Autistic youth are more likely to experience maltreatment, victimization, and other traumatic events. However, it can be difficult to identify trauma-related symptoms in autistic youth, especially in those with limited verbal communication. In this study, we compared the prevalence of trauma-related diagnoses given to youth with autism spectrum disorder (ASD) to those given to youth without ASD who presented to a specialized pediatric psychiatric emergency department. We found that youth with ASD were 42% less likely to receive trauma-related diagnoses than youth without ASD. As there is evidence that youth with ASD are no less likely to experience traumatic events compared with youth without ASD, one possible explanation for this result is that trauma-related symptoms are missed during emergency psychiatric evaluations. Developing trauma screening instruments specifically designed for the needs of youth with ASD is an outstanding need.

Lay abstract: There has been a growing push for the Autistic and autism communities to be more actively involved in autism research. From January 2021, the journal Autism made it a rule for authors to report whether they involved community members in their work; and if they did, how they had done so. In this study, we wanted to see how this new rule has changed things. Our team of Autistic and non-autistic researchers read all 283 articles published in Autism in 2019, about 2 years before the rule was in place, and in 2022, about 1 year after. We recorded what each article was about and how the community was involved. We found there was an increase in how often articles talked about community involvement - from about 10% before the rule to over 50% after. Most of these studies, however, only involved community members giving advice, with the researchers making most decisions about the research. This was especially true for applied research (like wellbeing) rather than basic science (like causes of autism). Also, some of these articles were unclear or did not give enough information for us to understand how the community was involved. This tells us that while it is promising that more community involvement is reported, researchers need to describe this involvement more clearly. It is also important for community members to have a bigger say in research by sharing power with the researchers or even leading the research themselves.

Lay abstract: This study explores the mental health journey of fathers with children on the autism spectrum. Little is known about mental health over time for these fathers. This research spans six-timepoints from when children were aged 4 to 14 years, to track fathers' mental health. This study had three aims: (1) report estimates of fathers' psychological distress across 10 years of child development; (2) identify separate courses of psychological distress over time; and (3) identify early risk factors associated with these courses. This study used data from 281 fathers of children on the autism spectrum who took part in the Longitudinal Study of Australian Children. Using a statistical method to group fathers based on their psychological distress scores over 10 years of child development, the results showed that two groups best explained the data; this included a group of fathers who experienced low levels of psychological distress over the 10 years of child development (84%), and another group of fathers who experienced heightened psychological distress across this time (16%). Further analysis showed that fathers who had an ongoing medical condition and higher levels of interparental conflict with their partners were more likely to be in the heightened psychological distress group. These findings show that almost one in six fathers deal with persistent psychological distress throughout their child's early childhood and into early adolescence. This study advocates for interventions focusing on improving fathers' physical health and the couple relationship as ways to positively impact fathers' mental health in the long run.

Lay abstract: Parents of autistic children may have limited time and resources to participate in physical activity, a key aspect of health. Previous studies have been small and included mostly mothers, rather than fathers. No studies have examined physical activity in these parents during another pregnancy, when physical activity is especially important for maternal and fetal health. We aimed to fill this gap by examining physical activity levels among mothers and fathers caring for an autistic child before and during a subsequent pregnancy. We used data from a study which followed pregnant individuals who already had a child with autism. We asked mothers and fathers to report their levels of moderate and vigorous physical activity. We found that mothers and fathers of autistic children reported lower physical activity levels than the national average and were unlikely to meet Physical Activity Guidelines for Americans. Pregnant mothers were the least likely to participate in physical activity, particularly if their autistic child scored highly on a measure of autistic traits. Given that parental physical activity has benefits for parents and children, family-based interventions may be needed to help support parents' physical activity levels.