Search

Lay Abstract: Autistic people are more likely to have health problems than the general population. They, and people who care about them, have said mental health research is very important, and some autistic adults have said quality of life is the most helpful area to research when focusing on mental health. Autistic people should also be more deeply involved in making decisions in research. Our review aimed to find out if and how quality of life is being measured when mental health treatments are being tested, and how autistic people and the wider autism community are involved in these studies. We searched four databases and other sources and found over 10,000 records. But just 19 research studies were testing mental health treatments for autistic adults, and only five of those measured quality of life. When they did measure quality of life, it was measured in different ways and there was not much information given on how communities were involved. We suggest mental health research should measure quality of life more often and in ways that are more helpful for autistic people. Our analysis found that mental health research needs to include a wider variety of autistic people, and autistic people should be more involved in the various parts of research., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Lay Abstract: There has been much research about the experiences of families of autistic children as they navigate the process of accessing a diagnosis and associated support. However, most of this work has been conducted in Europe, the United States, and Australia. In this study, we examined the experiences of 767 families in Ecuador via an in-depth survey. Of the families we surveyed, 651 had children whose journeys resulted in them receiving a formal autism diagnosis. Most families realized that their children might have developmental differences when they were between the ages of 6 and 48 months, after which they tended to seek support from a professional fairly quickly (i.e. within 6 months). Most families consulted with several different professionals before they accessed a diagnosis for their children, with children tending to receive a diagnosis before the age of 48 months. Families often reported negative emotions around their children's diagnostic and post-diagnostic journeys, which were commonly related to the lack of information and services available to them. We hope that through gaining a greater understanding of the experiences of families of autistic children in Ecuador, these findings can be used to inform public policies that lead to the development of supports and services that better meet the needs of autistic people and their families in this context., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

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., Competing Interests: Declaration of conflicting interestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship and/or publication of this article: E.P. was an Editor of Autism from 2012–2022, and was instrumental in the Journal’s adoption of the community involvement statement. L.C. was the Social Media Editor at Autism from 2010–2020, and was involved in discussions around the Journal’s adoption of the community involvement statement. The other authors have no competing interests of which they are aware.

Lay Abstract: Internships designed for autistic people can help them to find employment, but there is little research about the experiences of those involved with internship schemes. To learn more about a new paid internship scheme in the United Kingdom, the Employ Autism network, we interviewed 19 interns, who were autistic young adults without intellectual disability taking part in one of eight different internships. We also interviewed 22 employers (who worked with the interns), and 10 parents (who supported their children in the internship). The interns, employers and parents told us that the Employ Autism network was a valuable experience that helped the interns become more confident. Also, the parents said it helped the interns become more independent. All the groups said the Employ Autism network removed common barriers to employment, and interns and parents said it would help interns get a job in future. Employers and interns said they understood each other better during the internship, and employers said the internship made them think about how their organisations might have accidentally had barriers in place that could stop autistic people getting employed (barriers that they wanted to address in future). However, all groups said some expectations of the internship were not met. These findings suggest the Employ Autism network is helpful for autistic young adults without intellectual disability and employers, but that there are ways that the internships could be improved in future. We discuss the lessons we can learn from the Employ Autism network that might help others who are thinking about setting up, or getting involved in, similar internship schemes., Competing Interests: Declaration of conflicting interestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: The PhD research leading to these results was funded by Ambitious about Autism, who also developed and delivered the internship scheme this study evaluated. Ambitious about Autism were not involved in data analysis or write-up of the study. Please refer to the conflict of interest form for more information.

Lay Abstract: There has been increasing interest in research on loneliness in autistic adults. Much of this research has involved giving autistic adults widely-used questionnaires that are thought to measure how lonely people are. However, these questionnaires have been developed for the general public. We do not know whether these questionnaires accurately measure how lonely autistic adults are. We asked 203 autistic adults to complete an online survey that included two widely-used loneliness questionnaires: (1) the University of California, Los Angeles (UCLA) Loneliness Scale Version 3 and (2) the Social and Emotional Loneliness Scale for Adults (SELSA). We also asked participants to rate how lonely they were from 1 (often/always) to 5 (never). Participants were then asked to give their views on the questionnaires (e.g. what they thought was good, and what they thought was not so good about them). We found that the scores on the UCLA scale and the SELSA aligned with participants' ratings of how lonely they were, which suggests that these two questionnaires accurately measure loneliness in autistic people. However, our participants also identified several ways to improve the questionnaires. This included (1) better distinguishing the characteristics/experiences of loneliness from those of being autistic; (2) better reflecting how loneliness may change at different times and in different contexts and (3) making the phrasing of the questions clearer. Overall, our autistic participants tended to prefer the UCLA scale to the SELSA. Therefore, we present some recommendations about how the UCLA scale could be changed to be more suitable for autistic people., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Lay Abstract: 'Who, When, How to Share' is a new programme that aims to support autistic adults in making decisions around sharing their autistic identity with others. The programme involves working through a self-help guide independently over 3 weeks with optional peer support. We wanted to find out if autistic adults would join the programme and find it useful. Thirty-two autistic adults took part in the programme and 19 of them completed it. Most participants who completed the programme liked the programme and found it helpful, but some felt that they needed more time and support to complete it. They suggested that the programme would be more accessible if it was more interactive, such as including videos and other ways to gain feedback on their progress. Surveys filled in by participants before and after the programme suggested that they became more confident and less stressed about sharing their autistic identity with others, but some felt they still needed to build more confidence in order to handle negative attitudes from others. More work is needed to improve and test the programme further., Competing Interests: Declaration of conflicting interestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship and/or publication of this article: The authors disclosed their involvement in both the development and evaluation of the programme reported in this article. They declare no other conflicts of interest.

Lay Abstract: In some situations, autistic people feel pressure to change their social behaviour by camouflaging. In other situations, autistic people feel they don't need to change their social behaviour. Instead, they feel they can socialise in ways that feel authentic or true to themselves. Past research has tended to focus on autistic people's experiences of camouflaging rather than their experiences of authenticity. In this study, we asked autistic people what it is like for them when they can socialise in ways that feel authentic or true to themselves. Autistic people described authentic-feeling socialising as more free, spontaneous and open than camouflaging. In supportive environments, this kind of socialising had more positive and less negative consequences than camouflaging. Autistic people felt that having self-awareness and acceptance of their own social needs and being around autistic and nonautistic people who were accepting and understanding helped them to socialise in authentic-feeling ways. Autistic people also spoke about communication behaviours they felt nonautistic people should use to help overcome misunderstandings and create autism-friendly social environments. These findings suggest it is helpful for autistic people to have access to supportive and accepting social environments in which they feel able to socialise in ways that feel authentic to them. In creating such social environments, it is important to focus on nonautistic people's knowledge and attitude towards autistic people and also their ability to use helpful communication behaviours., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Lay Abstract: Employment interviews are challenging for many autistic people, for example, due to difficulties with interpreting questions. Autistic people also have differences in non-verbal communication, such as emotional expression, eye-contact, and gestures, with research showing that these factors negatively affect first impressions. Some studies have shown that perceptions of autistic people are more positive when the person observing them, such as an interviewer, is already aware of their diagnosis. However, previous research has not studied how disclosing one's autism diagnosis affects perceptions of a candidate undergoing a full employment interview. Participants in this study acted as raters, who watched a video of an autistic person undergoing a mock employment interview with a researcher, and then rated their overall impressions of them on factors important to real-world hiring decisions, such as confidence, motivation, and knowledgeability. Prior to watching the interview, raters were either (1) not aware of the interviewee's diagnosis, (2) made aware of their diagnosis, or (3) made aware of their diagnosis and provided with additional information about autism, such as differences in behaviours and communication. The results show that disclosing an autism diagnosis improved ratings compared to not disclosing the diagnosis. Providing additional information about autism alongside the diagnostic label did not improve ratings further. The findings are important for employers and autistic people; employers should consider improving procedures by which autistic people can disclose their diagnosis prior to interview should they wish, and autistic people may wish to consider the potential benefits of disclosing their diagnosis., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Lay Abstract: Autistic people are more likely to have mental and physical health problems than non-autistic people. Annual health checks could reduce these problems by finding and treating them early. Annual health checks are yearly medical appointments where a primary healthcare provider (such as a doctor or nurse) can check things like a patient's weight and heart rate and ask if they have any worries about their health. In this study, we wanted to understand what might encourage primary healthcare providers to use annual health checks with their autistic patients. First, we spoke to 10 autistic people and 11 primary healthcare providers. Using the findings from these conversations, we created an online survey for primary healthcare providers in England. We used the findings from the interviews and survey to help us understand what would encourage primary healthcare providers to offer annual health checks for autistic people. Our participants said that a lack of time and staff would make it hard to provide health checks. To help, they said other members of staff (such as nurses and healthcare assistants) could do the health checks, rather than doctors. They also said parts of the process could be made automatic to save time (e.g. sending automatic reminders). Knowledge about autism was important too (e.g. knowing about the common conditions autistic people have, and how to best support autistic patients). Participants said training on these topics, produced and delivered with autistic people, could encourage them to use annual health checks with their autistic patients.

Lay Abstract: Many autistic adults experience public stigma, which refers to negative attitudes and treatment from others. Because of that, some autistic adults may also apply unhelpful beliefs to themselves, which is known as internalised stigma. There is some evidence that both public stigma and internalised stigma are linked to poorer mental health in autistic adults. Clearly, it is crucial to change how society thinks and acts towards autistic people. There are several programmes that are trying to do this. But as change can be slow, support may also be needed to help autistic people cope with and challenge stigma. Using an online survey, we gathered the views of 144 autistic adults and parents/caregivers of autistic people in the United Kingdom on whether a stigma support programme for autistic adults is needed and, if so, what it should 'look' like. Most participants felt it was important for autistic adults to have support in managing stigma because of the harmful effects that stigma has on mental health and the challenges that autistic adults face in disclosing their diagnosis. However, participants were also concerned that such a programme could convey the message that autistic people, rather than society, need to change. Participants suggested that the programme should be positive and practical, helping autistic adults to understand and accept themselves, as well as learn context-specific strategies for responding to stigma and/or disclosing their diagnosis. They also stressed that the programme should be flexible and inclusive, recognising that autistic adults have very different needs and preferences.

Lay Abstract: Nearly three out of four autistic people experience mental health problems such as stress, anxiety or depression. The research already done does not guide us on how best to prevent or treat mental health problems for autistic people. Our aim was to look at the benefits and harms of different interventions on mental health outcomes in autistic people. We searched all the published randomised controlled trials (RCTs) about interventions for mental health conditions in autistic people until 17 October 2020. We also searched for RCTs that were not published in peer-reviewed journals. These were obtained from registers of clinical trials online. We then combined the information from all these trials using advanced statistical methods to analyse how good the interventions are. Seventy-one studies (3630 participants) provided information for this research. The studies reported how participants were responding to the intervention for only a short period of time. The trials did not report which interventions worked for people with intellectual disability. In people without intellectual disability, some forms of cognitive behavioural therapy and mindfulness therapy may be helpful. However, further research is necessary. Many trials used medications to target core features of autism rather than targeting mental health conditions, but these medications did not help autistic people. Until we have more evidence, treatment of mental health conditions in autistic people should follow the evidence available for non-autistic people. We plan to widely disseminate the findings to healthcare professionals through medical journals and conferences and contact other groups representing autistic people.

Lay Abstract: Recently, researchers have been interested in how autistic people experience loneliness. Yet, most of this research has focused on loneliness in autistic children and young people. We present the results of a systematic review on loneliness in autistic adults. A systematic review is a rigorous way of searching for all existing research on a topic and summarizing the findings about specific questions. We searched for all research published on this topic until 9 April 2021. We found 34 articles that investigated loneliness in autistic adults. This research showed that (1) there is fairly little research that has involved directly asking autistic adults about their first-hand experiences of loneliness (e.g. what loneliness feels like for them); (2) few research studies have used loneliness questionnaires specifically developed for autistic adults (this was attempted in just one research study); (3) collective loneliness (i.e. loneliness associated with how much an autistic person feels they 'fit in' to society) seems important to autistic adults but has not been investigated as commonly as other aspects of loneliness (e.g. loneliness associated with romantic relationships or friendships); (4) things that might increase loneliness in autistic adults include anxiety and depression, and a lack of autism understanding and acceptance, for example; and (5) things that might reduce loneliness in autistic adults include having relationships and self-acceptance, for example. In our article, we discuss the kinds of future research on loneliness in autistic adults that might be useful.

Lay Abstract: During the COVID-19 pandemic, high levels of depression, anxiety and stress have been reported in the general population. However, much less has been reported about the impact of COVID-19 on the mental health of autistic people. What we did: In the present study, we investigated how the mental health of autistic adults in the United Kingdom changed during the early stages of the COVID-19 pandemic. In total, 133 participants completed an online survey at two different time points. Of the 133 participants, 70 completed the survey at the first time point just before the onset of the national lockdown. This allowed us to look at changes in their mental health, from before the lockdown to 10 to 15 weeks during lockdown. All participants (133) told us about their experiences of the pandemic. What we found: While many autistic adults told us that their mental health worsened, people's experience varied. For some autistic adults, aspects of mental health (e.g. anxiety, stress) actually improved. Participants also described social changes that had occurred, at home and in the outside world. They described feelings of uncertainty during the pandemic, and discussed how the pandemic had affected some of their previous coping strategies. Participants also told us about their difficulties in accessing healthcare services and food during the early stages of the pandemic. In our article, we discuss these findings and focus on what needs to change to ensure that autistic people are better supported as the pandemic continues.

Lay Abstract: Camouflaging can be thought of as the process through which autistic people modify their natural social behaviours to adapt to, cope within or influence the largely neurotypical (non-autistic) social world. Many autistic people experience negative reactions to their natural or intuitive social behaviours when interacting with non-autistic people. Over time, in response to these negative reactions, autistic people's social behaviour often changes. We refer to autistic people's changed behaviours as 'camouflaging behaviours'. Research exploring camouflaging behaviours is still at an early stage. This study investigated camouflaging behaviours used by autistic adults in everyday social interactions using a research method that was new to the field of autism. Specifically, 17 autistic adults were filmed taking part in a common everyday social situation - a conversation with a stranger. With the help of the video of this conversation, they then showed and described their camouflaging behaviours to a researcher. These autistic people identified and described a total of 38 different camouflaging behaviours. The detailed and specific information provided by autistic adults about camouflaging behaviours generated important new insights into the ways in which autistic people adapt to, cope within and influence the neurotypical (non-autistic) social world.

Lay Abstract: 'Participatory autism research' refers to ways of involving autistic people and their allies (e.g. family members) in making decisions about research. These decisions can include what research gets done, how it gets done and how research findings are used. While there is more and more interest in participatory autism research, we know little about how researchers at different stages of their careers use this approach. To find out more, we discussed these issues with 25 researchers. Fourteen of these were at an early stage of their careers, and 11 were more senior researchers. We spoke to people in individual interviews or in groups. We then used a technique called thematic analysis to analyse our data, which involved us looking for common topics or 'themes' discussed by our participants. What did we find? Our participants told us that participatory autism research was a flexible approach, meaning that autistic people can be involved in research in many different ways. While people viewed this flexibility in a positive way, it also caused some confusion about what does or does not 'count' as participatory research. Our participants also spoke about how important it was to build relationships with those involved in their research, but they also said it could be difficult to communicate well with diverse groups of people who may not have much experience of research. Finally, our participants said it was hard to do participatory research when there was not much time, funding or support available to researchers. In this article, we discuss these findings, focusing on what needs to change to ensure that autistic people and their allies are meaningfully involved in autism research.

Lay Abstract: Because autism is a lifelong and complex condition, autistic people may need a range of supports cutting across different sectors (e.g. health, education and social care) at different stages of their lives. Studies in some countries have shown that autistic people and their families face difficulties accessing the services they need, but no research has been done on this topic in Singapore. To start addressing this gap, we interviewed 21 service providers, autistic adults and caregivers/parents of autistic children to find out their perceptions and experiences of autism services and supports in Singapore. Our participants told us that beyond improving access to autism-specific services, they also hoped to see more flexible supports in an inclusive environment and a broader change in societal attitudes. This study highlights that autism service provision should be informed by autistic voices and not only focus on impairment but also recognise the strengths of autistic people alongside their very real needs. The whole of society - including policymakers, professionals, employers, educators, families and autistic people themselves - needs to work together to fight autism stigma and discrimination.

Lay Abstract: There are a range of different types of schools that support children diagnosed with autism, including mainstream schools (where pupils are taught in general classrooms) and specialist schools (where pupils are exclusively taught alongside other children with special educational needs). An intermediary option involves resource bases attached to mainstream schools, which enable children to transition between mainstream and specialist educational settings. Autistic girls use a variety of strategies to negotiate the expectations and demands of school life. One of these strategies is known as camouflaging. This involves 'hiding' autism-based behaviours and developing ways to manage social situations, with the aim of fitting in with others. Research has shown that camouflaging can help to meet social expectations and friendships, but it can also result in challenges, including exhaustion and anxiety. In this study, we conducted detailed interviews with eight autistic girls, their parents and their school staff. The results showed that the girls tried to use camouflaging strategies to hide their autism and learning needs, especially within mainstream classrooms. Their camouflaging was often unsuccessful, which affected their relationships and sense of belonging. They also found camouflaging exhausting and distressing, which may (when combined with the demands of the classroom) affect their relationships, learning and mental health. This research provides important implications for supporting autistic girls who attend resource bases. These focus around increasing awareness of camouflaging and ways to support autistic girls, so they are included and able to fully participate and learn within school.

Lay Abstract: Many autistic people report that, despite personal costs, they use strategies to hide their autistic characteristics or appear non-autistic at work, school or university, when speaking with health professionals, or while socialising with certain friends and family members. These strategies are often referred to as camouflaging. This study explores camouflaging during everyday social interactions. A total of 17 autistic adults were filmed taking part in a common everyday social situation - a conversation with a stranger. They then watched the video of this conversation with a researcher and answered questions about camouflaging. These autistic people told us that they (1) had a strong desire to socialise with and be valued by other people but, because of negative past experiences, they often felt unsure about their ability to do so; (2) used camouflaging to help them to socialise and be valued by others; (3) experienced negative consequences when camouflaging (e.g. fatigue, anxiety and difficulties in friendships); and (4) sometimes socialised in more autistic ways instead of camouflaging. This study shows us how autistic people often change their behaviour because of the way they are treated by nonautistic people and that autistic people may benefit from programmes that help them to socialise in more authentically autistic ways, but only if their autistic social behaviour is met with understanding and acceptance from non-autistic people.

Lay Abstract: Despite possessing valuable skills, differences in the way that autistic people understand and respond to others in social situations mean that they are frequently disadvantaged in job interviews. We examined how autistic and non-autistic adults compared on standard (unmodified) job interview questions, and then used these findings to develop and evaluate supportive adaptations to questions. Fifty adults (25 autistic, 25 non-autistic) took part in two mock job interviews. Interview 1 provided a baseline measure of performance when answering typical, unmodified interview questions. Employment experts (unaware of participants' autism diagnoses) rated all interviewees on their responses to each question and their overall impressions of them and then provided feedback about how interviewees could improve and how questions could be adapted to facilitate this. Interviewees also provided feedback about the interview process, from their perspective. Adaptations to the questions were developed, with Interview 2 taking place approximately 6 months later. Results demonstrated that, in Interview 1, employment experts rated autistic interviewees less favourably than non-autistic interviewees. Ratings of both autistic and non-autistic participants' answers improved in Interview 2, but particularly for autistic interviewees (such that differences between autistic and non-autistic interviewees' performance reduced in Interview 2). Employers should be aware that adaptations to job interview questions are critical to level the playing field for autistic candidates.

Lay Abstract: Previous research examining how parents talk about autism with their children has tended to focus on parents who are not autistic themselves. We collected information on this topic from 34 autistic parents of autistic children (most of whom had told their children about their diagnosis). We found similarities, but also differences, between the views and experiences of autistic parents in this research and those reported in previous research (in studies of largely non-autistic parents). Similarities include the following: it is important to be open and honest about the diagnosis; the diagnosis should be introduced/discussed as early as possible; discussions should be tailored to each individual child's needs; and we should not overlook the challenges associated with autism, but it is important to focus on positive aspects too. Differences include the following: autistic parents used personal experiences in conversations about autism, which was felt to result in increased understanding and empathy with their children; autistic parents overwhelmingly focused on more positive aspects of an autism diagnosis; our sample did not express concerns that discussions could have negative consequences too (e.g. making children more anxious); and autistic parents did not want or need professional support to talk about autism with their children (instead, they felt confident in using their own knowledge/experiences to guide discussions).

Lay Abstract: During many types of interviews (e.g. in employment, with the police, and in healthcare), we need to recall detailed memories of specific events, which can be difficult for autistic people in response to commonly used questions. This is especially because these tend to be open questions (i.e. very broad). Autistic people have disproportionately high rates of physical and mental health conditions, are more likely to interact with police, and are the most underemployed disability group. However, interviewers are often unsure about how to adapt their communication for autistic people.Our research tested whether different types of prompts enabled autistic people to recall specific memories (memories of a single event within one day). Participants were asked about situations relating to witnessing a crime (e.g. at the bank), physical or mental health scenarios and employment interviews (e.g. a time you've met a deadline).We tested the following: Open questions : basic questions only (e.g. 'tell me about a time you went to the cinema'), Semantic prompting : a general prompt (e.g. 'do you enjoy going to the cinema?') before asking for a specific instance ('tell me about a time you went to the cinema?'), Visual-verbal prompting : asking participants to recall when it happened, who was there, the actions that occurred, the setting , and any objects .With visual-verbal prompting, autistic and typically developing participants' memories were more specific and detailed. Semantic prompting was also effective for employment questions. Our study shows that autistic people can recall specific memories when they are appropriately prompted. Visual-verbal prompting may be effective across different situations.

The way an autism diagnosis is disclosed to parents has been found to play a crucial role in their acceptance of, and the way they cope with, their child's diagnosis. Yet, research into parents' subsequent experiences of disclosing a diagnosis to their children, and talking to their families about autism more generally, is limited. Using an online survey, the current study examined 558 parents' experiences of talking about autism with their autistic and non-autistic children. Results demonstrated that most parents ( n  = 379, 67.9%) had told their autistic children about their diagnosis. Despite few parents ( n  = 163, 20.4%) receiving advice or support regarding the disclosure of the diagnosis, those that had disclosed felt satisfied with the process ( n  = 319, 84.2%) and felt confident in talking about autism with their children ( n  = 339, 92.4%). Those who had not told their autistic children about the diagnosis largely planned to discuss this with their child in the future ( n  = 100, 73.5%), felt confident in doing so ( n  = 95, 70.9%) and were satisfied with their decision ( n  = 95, 70.4%). Analysis of open-ended data, using thematic analysis, highlighted the importance of openness and the need to tailor explanations to individual children's needs, while acknowledging that disclosure could often be challenging for parents.

'Stereotyped or repetitive motor movements' are characterised as core features in the diagnosis of autism, yet many autistic adults (and the neurodiversity movement) have reclaimed them as 'stimming'. Supported by a growing body of scientific research, autistic adults argue that these behaviours may serve as useful coping mechanisms, yet little research has examined stimming from the perspective of autistic adults. Through interviews and focus groups, we asked 32 autistic adults to share their perceptions and experiences of stimming, including the reasons they stim, any value doing so may hold for them and their perceptions of others' reactions to stimming. Using thematic analysis, we identified two themes: stimming as (1) a self-regulatory mechanism and (2) lacking in social acceptance, but can become accepted through understanding. Autistic adults highlighted the importance of stimming as an adaptive mechanism that helps them to soothe or communicate intense emotions or thoughts and thus objected to treatment that aims to eliminate the behaviour.

Using vignettes and interviews, this study examined understanding and awareness of autism, and (a)typical development more broadly, among 32 Somali parents living in the United Kingdom. Results demonstrated that parents of both autistic (n = 16) and non-autistic (n = 16) children were just as likely to identify vignettes of typically developing children, yet parents of autistic children appeared more astute to signs of atypical development. Across the whole sample, parents commonly identified and labelled vignettes of autistic children, but experienced more difficulty labelling vignettes that described children with other forms of atypical development, sometimes mislabeling these children as autistic. This suggests that there is a need for greater support in recognising and identifying different types of atypical development in the Somali community (to mitigate the risk that the term 'autism' may take on its own meaning within the Somali community, becoming a euphemism for a range of developmental conditions). Analysis of interview data identified key sociocultural factors that either helped or hindered the inclusion of families with autistic children within the community, including the Somali community's: (1) perceptions of disability, (2) beliefs about the causes of autism in the Western world and (3) strong reliance on religious beliefs in understanding and accepting an autism diagnosis.

Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to people's lives and thus likely to have a positive impact. In the context of a large and growing body of autism research, with continued poor implementation, and some evidence of community dissatisfaction, there is a powerful case for participatory autism research. In order to develop a framework for such collaborative working, a UK seminar series was organised and co-produced by autistic and non-autistic people with academic, practitioner and lived expertise. This article reports on the outcomes from the series, identifying five topics relevant to building a community of practice in participatory research: Respect, Authenticity, Assumptions, Infrastructure and Empathy. Each topic is connected to a specific example from within and beyond research, to inspire new practices in the field. We call for the development of participatory research skills among the autism research community and the facilitation of greater autistic leadership of, and partnership in, research. Such work, if delivered to a high standard, is likely to lead to better translation into practice and improved outcomes for autistic people and those who support them.

There is a high incidence and prevalence of mental health problems among young people, with several barriers to help-seeking noted in this group. High rates of mental health problems have also been reported in children and adults on the autism spectrum. Taken together, young autistic people may be a particularly vulnerable group when it comes to mental health. Yet, there has been remarkably little work on the mental health needs and experiences of young autistic adults (16-25 years). Adopting a community-based participatory research (CBPR) approach - in which academic researchers and young autistic adults collaborated in an equitable research partnership - we explored young autistic people's experiences of mental health problems and their perspectives on the support they sought, if any, for these problems. A total of 130 young autistic adults took part in the research: 109 completed an online survey and 21 took part in detailed interviews. The results highlight how young autistic people find it difficult to evaluate their mental health, experience high levels of stigma and often face severe obstacles when trying to access mental health support. The findings also demonstrate how listening to - and learning from - young autistic people is crucial in ensuring that their mental health needs are met.

To date, research exploring experiences of diagnosing autism spectrum disorder has largely focused on parental perspectives. In order to obtain a more complete account of the autism spectrum disorder diagnostic process, it is essential that the views and experiences of professionals are heard. In this study, 116 multidisciplinary professionals involved in diagnosing autism spectrum disorder in the United Kingdom completed an online questionnaire exploring their experiences and opinions of three key areas of service: accessibility, the diagnostic process and post-diagnostic support. Although professionals were largely satisfied with service accessibility, around 40% of services were failing to provide timely assessments. Standardised diagnostic tools were perceived as helpful and were used consistently, but concerns were raised about their validity in detecting atypical autism spectrum disorder presentations (e.g. females). Several challenges regarding giving autism spectrum disorder diagnoses were reported; these included making sure caregivers understood the diagnosis, pitching information at the correct level and managing distress. Furthermore, the practice of 'upgrading' to a diagnosis of autism spectrum disorder in uncertain or complex cases was reported by many, albeit infrequently, and reasons for this varied widely. Professionals expressed dissatisfaction with post-diagnostic provision, especially onward and long-term support options. They also felt that service improvements were required across populations and across the three key areas of service., (© The Author(s) 2015.)

A sample of 1047 parents completed an online survey about their experiences and opinions regarding the process of attaining a diagnosis of autism spectrum disorder for their children. The results revealed that parents usually waited a year from when they first had concerns about their child's development before they sought professional help. On average, there was a delay of around 3.5 years from the point at which parents first approached a health professional with their concerns to the confirmation of an autism spectrum disorder diagnosis. Just over half of the parents surveyed were dissatisfied with the diagnostic process as a whole. Several factors predicted parents' overall levels of satisfaction with the diagnostic process, including the time taken to receive a diagnosis, satisfaction with the information provided at diagnosis, the manner of the diagnosing professional, the stress associated with the diagnostic process and satisfaction with post-diagnostic support. Post-diagnosis, the support (if any) that was provided to parents was deemed unsatisfactory, and this was highlighted as an area of particular concern among parents., (© The Author(s) 2015.)

Autobiographical memory difficulties have been widely reported in adults with autism spectrum disorder (ASD). The aim of the current study was to explore the potential correlates of autobiographical memory performance (including depressed mood, rumination, working memory and theory of mind) in adults with ASD, relative to a group of typical adults matched for age, gender and IQ. Results demonstrated that the adults with ASD reported higher levels of depressed mood and rumination than the typical adults, and also received lower scores on measures of theory of mind and working memory. Correlational analysis suggested that theory of mind and working memory were associated with autobiographical memory performance in the adults with ASD, but no significant relationships were observed between autobiographical memory, depressed mood and rumination in this group. To explore these patterns further, two cases of adults with a dual diagnosis of ASD and depression are discussed. These participants present a profile in line with the idea that depressed mood and rumination do not have the same influence on autobiographical memory in adults with ASD as they do in typical adults.

Individuals with autism spectrum disorder (ASD) often display impairments in creativity, yet savant artists with ASD are reported to produce highly novel and original artistic outputs. To explore this paradox, we assessed nine savant artists with ASD, nine talented art students, nine non-artistically talented individuals with ASD, and nine individuals with mild/moderate learning difficulties (MLD) on tasks in and out of their domain of expertise. This was to ascertain whether the performance of the savant artists was related to their artistic ability, their diagnosis of ASD or their level of intellectual functioning. Results demonstrated that the responses of the art students were more creative (as assessed on measures of fluency, originality, elaboration, and flexibility) than the savant, ASD, and MLD groups on a drawing task. Although the savants did produce more elaborative responses than the ASD and MLD groups, no differences were observed on the other indices of creativity. On a non-drawing task, the savants produced more original outputs than the ASD and MLD groups (scoring similarly to the art students), but group differences were not observed on the other measures.

Unusual sensory processing has been widely reported in autism spectrum disorders (ASDs); however, the majority of research in this area has focused on children. The present study assessed sensory processing in adults with ASD using the Adult/Adolescent Sensory Profile (AASP), a 60-item self-report questionnaire assessing levels of sensory processing in everyday life. Results demonstrated that sensory abnormalities were prevalent in ASD, with 94.4 percent of the ASD sample reporting extreme levels of sensory processing on at least one sensory quadrant of the AASP. Furthermore, analysis of the patterns of sensory processing impairments revealed striking within-group variability in the ASD group, suggesting that individuals with ASD could experience very different, yet similarly severe, sensory processing abnormalities. These results suggest that unusual sensory processing in ASD extends across the lifespan and have implications regarding both the treatment and the diagnosis of ASD in adulthood.