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There is an increasing focus on research exploring autistic communication and community. In this review, we systematically collate and analyse how autistic adults describe their experiences of other autistic people and the relationship this has with their Quality of Life (QoL). Fifty two qualitative papers were analysed using thematic meta-synthesis. Results found many experiences of other autistic people were positive and were associated with improved QoL across a range of domains. The heterogeneity of the autistic experiences described indicates a need for further research to explore which factors predict a positive impact on QoL. Analysis also highlighted a paucity of data on autistic people with co-occurring intellectual disability in relation to this phenomenon. Implications for research and practice are discussed.Research has suggested that autistic people enjoy spending time with other autistic people and find them easier to talk to. We wanted to find out what autistic people say about spending time with other autistic people and whether this makes their life better. We found 52 papers which described this and reviewed what they found. We found that many autistic people had positive experiences of spending time with other autistic people and these experiences had positive impact on their lives in a range of different ways. The papers did not tell us whether this also happens for autistic people with a learning disability. More research is needed to find out more about why spending time with other autistic people helps some autistic people. [ABSTRACT FROM AUTHOR]

Some autistic people use strategies to hide autistic behaviour and appear more neurotypical. Previous research has linked this 'social camouflaging' with mental health difficulties. This review synthesised qualitative research to explore the relationship between camouflaging and mental health. Thirteen studies were systematically identified, appraised and synthesised using meta-ethnography. Four third-order concepts were developed, describing camouflaging as an attempt to cope with stressful social contexts which impact mental health. Many autistic people experienced unintended negative consequences of their camouflaging that increased stress. Potential mechanisms for the relationship between camouflaging and mental health related to the qualities of the strategies that were used. Camouflaging strategies that were superficially 'successful' involved high levels of self-monitoring, were highly cognitively demanding or highly habitual and appeared more linked to poor mental health. This should be investigated in future research and has potential implications for how clinicians support autistic people with mental health difficulties. Some autistic people describe trying to hide autistic behaviour and seem more neurotypical. Researchers called this 'social camouflaging' and have linked it with mental health difficulties. We used a step-by-step approach to identify research where autistic people talk about social camouflaging to explore the relationship between camouflaging and poor mental health. Thirteen studies were combined. The results describe how society negatively impacts autistic people's mental health, and camouflaging is a way to try and cope with this. Many autistic people find their camouflaging strategies have accidental negative consequences which also affect their mental health. Strategies which seemed 'successful' involved a lot of self-monitoring, were very mentally demanding or were very habitual and seemed to have more of an effect on mental health. This might be important for clinicians who support autistic people with mental health difficulties. [ABSTRACT FROM AUTHOR]

The purpose of this study is to explore the views of autistic adults on randomised controlled trials, specifically on processes such as randomisation and blinding, to understand the barriers and facilitators for recruiting autistic people to randomised controlled trials involving medications. We conducted one-to-one interviews with 49 autistic adults. Interviews were audio-recorded and analysed thematically. The participants found randomised controlled trial processes acceptable and linked positive attitudes towards randomised controlled trial participation to autistic peoples' heightened sense of fairness and preference for evidence-driven knowledge. However, randomised controlled trial designs may be incompatible with a (1) preference for a controlled predictable world, (2) perceived vulnerability at physical and mental health levels and (3) history of misunderstanding and exclusion, crucially from healthcare professionals. Suggestions that emerged from our findings include efforts to co-produce research to nurture trust and adapting communication practices to improve access to trials. Autistic people are a highly motivated group to work with research teams to mitigate barriers to randomised controlled trial participation. We explored what psychosocial determinants play a role in the acceptability of randomised controlled trials to test interventions to improve quality of life and mental health in autistic adults. The study provides useful information that may help the design and conduct of more accessible trials with and for the autistic community. Large randomised controlled trials are used to test healthcare treatments. Yet there are no large randomised controlled trials on effective treatments for common mental health issues affecting autistic adults. The purpose of this study was to learn what autistic adults think about randomised controlled trials in preparation for a randomised controlled trial testing a medication for anxiety. This means we wanted to know their opinions about the way randomised controlled trials are done, such as how people are chosen to be in the study and how the study is carried out. We did this by talking to 49 autistic adults individually and asking them questions. We found that most of the people we talked to were okay with the way randomised controlled trials are done. They thought it was fair and they liked that it was based on evidence. However, some autistic people might find it hard to take part in randomised controlled trials. Some people did not like the uncertainty of not knowing what treatment they would receive in a randomised controlled trial. Others felt too vulnerable and may have had bad experiences with healthcare in the past. We found that it is important to involve autistic people early on and at every stage when designing a clinical trial. Care about how clear and precise the study communication is will build trust and improve access to research. Our study indicates that it is possible to conduct large randomised controlled trials with and for autistic people. This can ultimately contribute to the improvement of healthcare outcomes for this population. [ABSTRACT FROM AUTHOR]

Autistic individuals experience higher rates of externalising and internalising symptoms that may vary with environmental factors. However, there is limited research on variation across settings that may highlight common factors with globally generalisable effects. Data were taken from two cohorts: a multinational European sample (n = 764; 453 autistic; 311 non-autistic; 6–30 years), and a South African sample (n = 100 non-autistic; 3–11 years). An exploratory factor analysis aggregated clinical (Verbal Comprehension and Perceptual Index), adaptive traits (Vineland Adaptive Behaviour Scale) and socio-economic variables (parental employment and education, home and family characteristics) in each cohort separately. With regression, we investigated the effect of these factors and autistic traits on internalising and externalising scores (measured with the Strengths and Difficulties Questionnaire). Cohorts showed similar four-factor structures (Person Characteristics, Family System, Parental and Material Resources). The 'Family System' factor captured family size and maternal factors and was associated with lower internalising and externalising symptoms in both cohorts. In the European cohort, high autistic traits reduced this effect; the opposite was found in the South Africa cohort. Our exploratory findings from two separate analyses represent consistent evidence that Family System is associated with internalising and externalising symptoms, with a context-specific impact in persons with high autism traits. Autistic individuals are more likely than non-autistic individuals to experience a mental health condition in their lifetime, and this includes externalising and internalising symptoms. We know very little about how different environments and family conditions impact these symptoms for autistic individuals. Improving our understanding of these relationships is important so that we can identify individuals who may be in greater need of support. In this article, we seek to improve our understanding of how environmental and family conditions impact externalising and internalising symptoms in autistic and non-autistic people. To do this, we conducted analyses with two cohorts in very different settings – in Europe and South Africa – to ensure our findings are globally representative. We used advanced statistical methods to establish environmental and family conditions that were similar to each other, and which could be combined into specific 'factors'. We found that four similar 'factors' could be identified in the two cohorts. These were distinguished by personal characteristics and environmental conditions of individuals, and were named Person Characteristics, Family System, Parental and Material Resources. Interestingly, just 'Family System' was associated with internalising and externalising symptoms, and this was the same in both cohorts. We also found that having high traits of autism impacted this relationship between Family System and mental health conditions with opposite directions in the two settings. These results show that characteristics in the Family System are associated with internalising and externalising symptoms, and autistic persons are particularly impacted, reinforcing the notion that family stressors are important to consider when implementing policy and practice related to improving the mental health of autistic people. [ABSTRACT FROM AUTHOR]

There is a dearth of research into the experience of adult diagnosis of autism spectrum disorder, and targeted research is needed to understand the needs of these adults. The aim of this coproduced review was to assess existing qualitative data on the lived experience of receiving an autism spectrum disorder diagnosis, identify recurring themes, and synthesize them into a visual model representing the journey through diagnosis. Using thematic analysis, we analyzed qualitative data from 24 studies of adult experiences of autism spectrum disorder diagnosis from PsycINFO, Embase, MEDLINE, and CINAHL. Thirty-two "descriptive" themes and three superordinate themes were identified. These themes represented how factors relating to identity and relationships are impacted by the diagnosis of autism spectrum disorder and the role of adaptation and assimilation. While the diagnostic process was confusing and disappointing for many, it often led to a sense of relief and clarity regarding past experiences. It created opportunities to connect with other autistic individuals and to access services, though appropriate supports were widely lacking. Recommendations are made that the diagnosis process explicitly considers needs in relation to: the impact of the diagnosis on identity, interactions with other people, choices regarding disclosure, and whether and how to make informed adaptations. There is little research looking at the experience of individuals diagnosed with autism spectrum disorder as adults. Adults diagnosed with autism spectrum disorder face different challenges than children, and more research is needed to better understand those challenges. For this review, autistic and non-autistic researchers looked at research on the experience of receiving a diagnosis of autism spectrum disorder as an adult. We looked for themes in people's experience leading up to diagnosis, going through the diagnostic process, and living their life after diagnosis. We analyzed 24 studies and found three overarching themes that captured thirty-two themes describing the experience of diagnosis. The three overarching themes expressed issues with identity and relationships before and after the diagnosis and identified that the diagnosis of autism spectrum disorder in adulthood impacted people's adaptation to and assimilation (i.e. the making sense of and internalizing the diagnosis) of autism spectrum disorder. While the diagnostic process itself was confusing and disappointing for many, it often led to a sense of relief and clarity regarding past experiences and had effects on identity and self-esteem. It created opportunities to connect with other autistic individuals and to access services, though appropriate supports were widely lacking. Recommendations are made that the impact of the diagnosis on people's identity and choices about telling others about their diagnosis, and whether and how people want to make adaptations, should be discussed and thought through in the process of diagnosis. [ABSTRACT FROM AUTHOR]

The growing number of autistic adults challenges the limited adult service system. While data on service use and barriers are available, there is limited information from the individual's perspective on which services are most helpful in adulthood and how service use is connected to community participation outcomes. Forty autistic adults participated in a study combining global positioning system community participation measures with survey and interview data on service use, including which services are most helpful in adulthood, barriers to services, and service needs. Participation outcomes were analyzed relative to demographics, number and types of services received in the past 2 years, and current mental health service use. Participants received an average of two services in the past 2 years, most frequently mental health and employment services. Individuals currently seeing a mental health counselor were more likely to be working full-time and visit more community locations compared to those who were not seeing a counselor. Participants reported mental health services as the most helpful service received in adulthood followed by employment services. While an emphasis is often placed on employment services in the transition to adulthood, findings suggest a need for integrated mental health and employment services for autistic adults. The number of autistic adults is growing, but there are fewer services to support them in adulthood. Many autistic adults need some support services to lead successful adult lives. We know a lot about the services autistic adults use and some of the problems with using these services, but we do not know which services are most helpful to them and how the services they use relate to how they interact with their communities. Forty autistic adults took part in a study about service use and community participation. They completed surveys, interviews, and carried a global positioning system tracker. They answered questions about which services are most helpful in adulthood, things that make it hard to use services, and what services they needed. Most participants used two services in the past 2 years, most frequently mental health and employment services. Adults who were currently seeing a mental health counselor were more likely to be working full-time and visit more locations in the community compared to those who were not seeing a counselor. Mental health services were reported as the most helpful service they received as adults, followed by employment services. We often focus on the importance of employment services after high school, but our findings show a need for both mental health and employment services for autistic adults. [ABSTRACT FROM AUTHOR]

Many autistic adults are likely to experience poor financial wellbeing and hardship due to unemployment and under-employment. Research in the general population demonstrates that subjective financial wellbeing—how people perceive their financial situation—influences quality of life. There is no research, however, examining the subjective financial wellbeing of autistic people. This study therefore aimed to (1) understand the subjective financial wellbeing of a sample of autistic adults living in Australia compared to a general Australian population sample and (2) identify the predictors of subjective financial wellbeing in this sample of autistic adults. To this end, 191 autistic adults aged 18–83 years (mean = 39.28, standard deviation = 11.74) completed an online survey about their economic status, financial wellbeing, financial behaviors, confidence in money management skills, and anxiety and depression symptoms. Almost half of our sample felt it was a struggle to make ends meet, whereas only one-third of the general Australian population felt this way. Similar to the general population, autistic people's income and their financial behaviors (specifically, saving and not borrowing for everyday expenses) predicted their sense of financial wellbeing. Our findings have implications for both research and practice. Researchers have found the way people feel about their financial situation is related to their quality of life. We know that many autistic people find it hard to find a job. And for those autistic people who have a job, they are often underpaid. Not having a job or being underpaid often means having low income. Having low income is likely to influence how autistic people feel about their financial situation. However, no research has looked at these issues for autistic people. This is the first study that helps us learn more about what autistic adults think about their financial situation. We looked at autistic people's thoughts on this issue compared to people from the general Australian population. We also looked at what things might impact how autistic people feel about their financial situation—which might be how much money they earn, what they do with that money, and their mental health. Many autistic adults felt they were struggling with financial wellbeing and this was connected both to the level of their income and how they said they managed their money. Those who were able to save and not borrow for everyday expenses reported feeling a greater sense of financial wellbeing. Concrete changes might help to improve autistic people's financial wellbeing. We need to investigate how we can help autistic people find and keep well-paying jobs. And we need to work out the best ways of equipping autistic people with the skills they need in financial matters. [ABSTRACT FROM AUTHOR]

Autism disclosure can be a complicated decision that autistic people experience. Positive outcomes can include feelings of acceptance and support, but negative outcomes can include stigma and discrimination. Although a surge in research on this topic has led to more understanding around autism disclosure, the methodologies used may have limited who was contributing to the conversation and data. To overcome this, we analyzed 3 years (2020−2022) of social media data (Reddit and Twitter) as this was public information that did not rely on researcher data collection. Reflexive thematic analysis of 3121 posts led to the generation of four themes: People do not understand autism (with experiences related to employment, dating, healthcare and mental health), autistic people just want privacy and respect, autistic people can lead us forward and non-autistic people need to assume more responsibility. We discuss how autistic adults experience the impact of society's lack of understanding of autism on a daily basis whether they disclose or not, and that it is everybody's responsibility to challenge negative stereotypes and promote a more inclusive society. Autism disclosure – that is sharing their autism diagnosis or identity with a person or people – is a difficult decision for many autistic people. While telling people they are autistic can be positive and helpful, it can also create a lot of problems. What we have learnt is that disclosure is really complicated. Rather than asking research participants questions about what might happen, we looked at what people were saying on public social media posts (Reddit and Twitter) about what did happen. We used three years of posts that were related to autism disclosure from a wide range of adults (autistic and non-autistic). Four main ideas were created from our data, with the key finding being that society does not understand autism. This lack of understanding creates problems for autistic people in work, dating, healthcare and mental health. The remaining ideas were that autistic people should have privacy and be treated with respect, that autistic representation can help society and that non-autistic people need to do more to help autistic people. Our findings support that society needs to do more through autism advocacy, better media representation and more public role models. Increasing the accuracy of understanding of autism across society will mean that autistic people can feel safer to disclose if they want to. [ABSTRACT FROM AUTHOR]

Financial wellbeing is an important component of people's overall wellbeing, reflecting the capacity to live a comfortable and fulfilling life. Yet virtually nothing is known about this topic for autistic people. This study addressed this gap using a two-phase sequential mixed-methods design. Here, we report on findings from the Phase 2 qualitative study. In this study, 21 autistic participants were purposively selected based on the status of their financial wellbeing, including 12 people with high, and 9 with low, financial wellbeing, and interviewed by an autistic researcher. We identified four themes through reflective thematic analysis. Having access to a stable income made an enormous difference to people's financial wellbeing. Participants emphasised how their broader social supports, especially family support, shaped their financial wellbeing. Yet, planning financially was often challenging, especially for people who had insufficient money to meet their basic needs. Nevertheless, our participants reported a strong drive to stay in control and avoid unnecessary risk. Our findings revealed how much money matters in autistic people's lives. Future research should investigate the ways in which autistic people could secure more reliable incomes and identify the most effective ways to support them to achieve financial resilience. Money matters in people's lives. It helps to meet people's basic needs (food, clothes, shelter) and live the lives they want to. When people talk about 'financial wellbeing', they mean how much you feel in control over day-to-day finances and how much freedom you have to make choices to enjoy life. We don't know what autistic people think about these things. That's why we did our study. We spoke to 21 autistic adults (24–69 years) about how they felt about their financial situation. We deliberately spoke to people who had told us previously they felt 'financially well' or 'financially unwell' so we could hear a range of opinions. Autistic people told us financial wellbeing meant having enough money to pay for their basics needs, to have a safety net for unexpected bills and not having to worry about money now or in the future. But many felt that good financial wellbeing was not possible for them. They often did not have a stable income to cover day-to-day expenses. This limited the choices they could make. Despite these challenges, autistic people told us they worked hard to budget and save money when they could – because feeling financial insecure was just too stressful, especially when they could not rely on family or friends for support. It made them feel mentally unwell. Our study shows there are many factors that influence autistic people's financial wellbeing. We need more research to help us understand how autistic people can be supported to achieve financial security. [ABSTRACT FROM AUTHOR]

Autistic girls and women experience more mental health difficulties and poorer well-being than their non-autistic peers. Little emphasis has been placed on the perspectives of the girls and women within the literature. This review aims to provide an overview of the factors that impact autistic females' emotional and social well-being and mental health, as described in self-report qualitative studies. The protocol for the present review was pre-registered on PROSPERO (CRD42020184983), and this article follows Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PsycInfo, Academic Search Complete and MEDLINE were systematically searched using a pre-defined search string. This yielded 877 unique records, which were systematically screened by two reviewers, resulting in 52 eligible studies. Structured data extraction and quality appraisal were completed. The present review presents the perspectives of 973 autistic females aged 13–70+. Thematic synthesis identified three themes and nine subthemes. Our findings suggest that autistic girls' and women's experiences can be conceptualised within a social model, where biological and psychological factors ('The Autistic Neurotype') are experienced through the lens of social factors ('The Neurotypical World' and 'Stigma'), together shaping well-being and mental health outcomes. Difficulties with mental health and low levels of well-being are more common among autistic girls and women than non-autistic people, but we do not fully understand why. Research does not focus enough on what autistic girls and women could tell us about this. This review aims to summarise the studies where autistic girls and women explain things that affect their mental health and well-being to help us understand how to prevent these difficulties from developing. Three research databases were searched to find possibly relevant studies. There were 877 studies found, which two researchers screened according to particular criteria. They found 52 studies that could be included in this review. One researcher evaluated the quality of these studies and extracted the key information from them. This review summarises the views of 973 autistic girls and women aged between 13 and 70+. The findings from the 52 studies were analysed, and we found many factors that affect the mental health and well-being of autistic girls and women. These factors fall into two categories: (1) difficulties living in a world not designed for autistic people and (2) the impact of stigma due to being autistic. [ABSTRACT FROM AUTHOR]

Camouflaging is hypothesized to play an important role in developing mental health difficulties. But this might not be true for everyone. It remains unclear for whom camouflaging is associated with mental health. In this preregistered study (AsPredicted #45095), we investigated whether (1) camouflaging and mental health were associated and (2) we could detect subgroups with a different association between camouflaging and mental health. For this study, 352 autistic adults aged 30–84 years filled in, among others, the Dutch Camouflaging Autistic Traits Questionnaire to measure camouflaging and the Symptom Checklist-90 Revised to measure mental health difficulties. We found a moderate correlation between camouflaging and mental health difficulties (r = 0.45). However, there was only a strong association between camouflaging and mental health in a small subgroup, while the association was small in most autistic adults. For varying levels of negative affect and (to a lesser extent) autism traits, the association between camouflaging and mental health differed, but not for biological sex, age, or educational level. Thus, while one should be careful with group-based conclusions regarding the (negative) impact of camouflaging, camouflaging can be important to consider in clinical practice, especially for people with a substantial level of negative affect. When autistic people use strategies to hide their autistic characteristics, we call this camouflaging. Autistic adults suggested that camouflaging can result in mental health difficulties. That is, people who report to camouflage also report mental health difficulties. However, since there are many differences between autistic people, this relationship may also differ between subgroups. Therefore, in this study we investigated whether camouflaging and mental health difficulties are related and whether this relationship is equal for all autistic adults. For this study, 352 autistic adults aged 30–84 years filled in the Dutch Camouflaging Autistic Traits Questionnaire to measure camouflaging and the Symptom Checklist-90 Revised to measure mental health difficulties. We found that camouflaging was moderately related to mental health difficulties. This means that people who report more camouflaging also report more mental health difficulties. When we looked closer, we found that this relationship was strong for only a small subgroup of autistic adults. In most other autistic adults, there was a small or no relationship between camouflaging and mental health difficulties. Therefore, it is important that clinicians are aware of camouflaging and its possible relationship with mental health difficulties, but that they do not generalize the negative consequences to everyone. [ABSTRACT FROM AUTHOR]

Autistic youth frequently experience interfering anxiety, and schools may be an ideal setting to deliver mental health care. A type 1 hybrid-effectiveness, cluster randomized trial was used to examine the effectiveness of school-based Facing Your Fears compared to usual care. Change in provider cognitive behavior therapy knowledge and treatment fidelity (adherence and provider competence) were also examined. Seventy-seven interdisciplinary school providers across 25 elementary/middle schools were trained via a train-the-trainer approach. Eighty-one students, ages 8–14 years, with autism or suspected autism and anxiety participated. Students who received school-based Facing Your Fears displayed significantly greater reductions in anxiety compared to students in usual care according to caregiver and child report (Screen for Anxiety and Related Emotional Disorders). Significant reductions in total anxiety (p = 0.012), separation (p = 0.002), and social anxiety (p = 0.003) subscales occurred, according to parent report. Student self-report indicated significant reductions on the social anxiety subscales (p = 0.001). Interdisciplinary school providers demonstrated significantly increased cognitive behavior therapy knowledge following training (p < 0.001). Mean adherence and competence ratings were strong. The positive effectiveness and implementation outcomes are encouraging. Training interdisciplinary school providers to deliver school-based Facing Your Fears has the potential to increase access to care for anxious autistic students. Future directions and limitations are discussed. Autistic youth frequently experience anxiety that can negatively affect them at home, with friends, and at school. Autistic youth have difficulty accessing mental health care, and this is particularly true for youth from traditionally underserved backgrounds. Providing mental health programs in schools may increase access to care for autistic youth with anxiety. The purpose of the study was to train interdisciplinary school providers to deliver school-based Facing Your Fears, a cognitive behavior therapy program for anxiety in autistic youth. Seventy-seven interdisciplinary school providers across 25 elementary/middle schools were trained by their colleagues and members of the research (train-the-trainer approach). Eighty-one students with autism or suspected autism, ages 8–14 years, were randomly assigned to either school-based Facing Your Fears or usual care. Students in school-based Facing Your Fears showed significant reductions in anxiety compared to students in usual care according to caregiver and student report. Other measures involved examining change in provider cognitive behavior therapy knowledge after training and determining how well interdisciplinary school providers were able to deliver school-based Facing Your Fears. Results indicated that interdisciplinary school providers showed significant improvements in cognitive behavior therapy knowledge after training. Interdisciplinary school providers were able to deliver most of school-based Facing Your Fears activities and with good quality. The positive outcomes in this study are encouraging. Training interdisciplinary school providers to deliver school-based Facing Your Fears may increase access to care for anxious autistic students. Future directions and limitations are discussed. [ABSTRACT FROM AUTHOR]