Autistic Adults' Priorities for Future Autism Employment Research: Perspectives from the United Kingdom.

Background: A growing body of research has sought to understand autistic people's research priorities. Several of these studies have identified employment as a key research priority. Yet, there have been a few attempts to identify specific, actionable priorities within this area. Methods: Using an online survey, we asked 197 autistic people in the United Kingdom about their priorities for future autism-employment research. Results: Participants spoke of their challenges in gaining and sustaining meaningful employment and called for researchers to conduct research that results in direct improvements to employment experiences. Regarding their research priorities, participants indicated a need for research covering all aspects of the employment lifecycle from accessing employment to transitioning out of employment. Importantly, participants also discussed how such research should be conducted: with autistic people as co-researchers and ensuring a diverse range of autistic people are listened to. Conclusion: While much existing autism-employment research appears to align with the priorities outlined in this study, seemingly minimal attention has been paid to later stages of the work lifecycle (e.g., progressing into more senior job roles or transitioning out of work). By identifying disparities between autistic people's priorities and the research being conducted, we can support autistic people to drive the research agenda and ensure autism-employment research positively impacts the community it aims to serve.

Why was this study done?: It is important for autism research to identify and study topics that are important to autistic people. Employment has been highlighted as an important topic by autistic people in many studies. However, we don't know what specific topics employment research should look at. What was the purpose of this study?: We wanted to know which employment-related topics autistic people think are important to research and understand why. What did the researchers do?: We created an online survey to ask autistic people about what employment research should look at. The survey asked participants about themselves (e.g., their age) and their employment experience (e.g., if they were employed or not). We also asked questions about what employment topics should be researched, why these topics are important, and what changes employment research should lead to. In total, 197 autistic people responded. We read through all the responses and grouped similar responses together. What were the results of the study?: Lots of our participants found it hard to find and keep a job. They wanted research to make autistic peoples' experiences of employment better. For example, by making hiring processes better, and by making workplaces more inclusive. They also said that research should look at all parts of employment from getting a job, to leaving a job and retiring. Participants also talked about how research should be done. They said more autistic people should be included as researchers, and we should include different autistic people from different backgrounds. What do these findings add to what was already known?: Our findings show that lots of autism-employment research is on topics that autistic people think are important. However, not much research has looked at later stages of employment, such as getting a promotion or retiring. What are potential weaknesses in the study?: Most of our participants were White, female, employed and had a degree, but in the wider autistic population that isn't the case. People from other backgrounds may have different experiences of employment, and therefore want different research. We also don't know which topic is the most important because we didn't ask participants to rank the topics they spoke about. How will these findings help autistic adults now or in the future?: This study highlights key topics that autism-employment researchers should look at. By showing where the gaps in research are, we can make sure that all the employment topics autistic people think are important are researched.

Career progression for autistic people: A scoping review.

LAY ABSTRACT: Lots of autistic people are unemployed. Even when they are employed, autistic people might be given fewer opportunities than non-autistic people to progress in their careers. For example, assumptions about autistic people's differences in social communication might mean they are not given as many promotions. Indeed, we know that many autistic people are in jobs lower than their abilities (known as 'underemployment'). We reviewed 33 studies that tell us something about career progression for autistic people. Our review found that lots of autistic people want to progress in their careers, but there are many barriers in their way. For example, when they told their employer about being autistic, some people were given fewer opportunities. Research has also shown that autistic people do not get enough support to progress and that gaps in their employment history can make it difficult to progress. Our review suggested that good employment support (e.g. mentors) might help autistic people to progress in their careers. However, not much research has evaluated employment support for autistic people, which means we do not know how useful it is. Future research should find the best support that allows autistic people to live and work in ways that are meaningful to them.

Autistic identity: A systematic review of quantitative research.

Autism can be considered both a personal and social identity. Identifying the factors contributing to positive Autistic identity development is crucial given the potential implications for mental health and wellbeing. In this systematic review, we aimed to synthesize quantitative literature on Autistic identity to identify the (individual and environmental) factors associated with Autistic identity, and to ascertain the relationship between Autistic identity and mental health and wellbeing. A total of 3,617 studies were screened and 20 met our inclusion criteria. Results indicated that people developed a more positive Autistic identity when receiving external autism acceptance and external support. The association between individual factors and Autistic identity were largely nonsignificant or inconclusive, highlighting the need for broad support that meets the needs of a range of Autistic people, rather than specific subgroups. Importantly, positive Autistic identity was associated with improved mental health and wellbeing. Peer support and/or self-directed support resources may be valuable mechanisms for supporting Autistic people to cultivate a positive Autistic identity. The evaluation of such support, including the long-term impacts on identity development, will be a critical avenue for future research.

'It seems like a luxury to be able to offer that': Factors influencing the implementation of annual health checks for autistic people in England.

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.

Evaluating measures to assess loneliness in autistic adults.

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.

The workplace masking experiences of autistic, non-autistic neurodivergent and neurotypical adults in the UK.

Masking entails hiding or concealing one's traits during social interactions. Research suggests that masking is particularly common for autistic people, though many non-autistic people also conceal aspects of their identity. Existing research has identified the key motivations and consequences of masking. No research to date, however, has considered how this might be affected by the social context in which masking is employed. This study compared the masking experiences of 285 autistic, 88 non-autistic neurodivergent and 99 neurotypical adults within a context in which masking is expected to be highly prevalent, namely the workplace. We used reflexive thematic analysis to explore the motivations, consequences, and contextual differences of workplace masking compared to other social contexts. Workplace masking was considered by participants in all three groups to be an adaptive response to a range of socially grounded workplace challenges and was usually employed as a strategy to safeguard against the threat of negative social and employment outcomes. Our non-autistic neurodivergent and autistic participants, however, reported experiencing unique pressures to mask, given the limited understanding of neurodiversity in workplaces and society more broadly. These findings have important implications for the wider masking literature and for workplace practice.

Evaluating the online delivery of an autistic-led programme to support newly diagnosed or identified autistic adults.

Background & aims: Exploring Being Autistic is an autistic-led group-based programme providing psychoeducation and peer support to newly identified/diagnosed autistic adults. In 2020, due to social distancing measures implemented following the coronavirus pandemic, Exploring Being Autistic was adapted for online delivery. Here, we aimed to replicate previous research into the in-person delivery of Exploring Being Autistic, to determine whether similar results were obtained when the programme was delivered online. Further, we aimed to identify the unique opportunities and challenges that online delivery afforded. Methods: We used a community-based participatory research (CBPR) approach, whereby the autistic developer and facilitator of Exploring Being Autistic worked collaboratively with a team of academic researchers throughout the research process. Together, we evaluated two iterations of the online Exploring Being Autistic programme, involving 16 attendees. Attendees completed questionnaires before, during and after the programme. Attendees were also invited to participate in two post-programme (group or individual) interviews: one following the completion of the programme (time one) and another 6-8 months later (time two). Attendees were included in the research if they completed at least one questionnaire or interview. Data were analysed qualitatively, using reflexive thematic analysis. Results: Experiences of participating in the programme tended to be positive. Participants appreciated the autistic-led nature of the programme, found unity in the diversity of the group, and developed a positive and practical outlook as a result of the programme. Further analyses of our data revealed mixed views regarding the online delivery of the programme. Opportunities of online delivery were noted, such as this mode of participation reducing cognitive load, enabling the programme to be accessible to more participants, and fostering meaningful social connections among participants. However, technology and practical issues were felt to cause barriers, and some human aspects of participation were felt to be 'lost in translation' (e.g., in breakout groups). Conclusions: The online delivery of the Exploring Being Autistic programme yielded similar results to previous, in-person evaluations of the programme. While we identified positive aspects of online delivery, this mode did not entirely suit everyone's needs. Implications: From the current findings, we can make several recommendations to develop online support for autistic people. First, flexibility is key. To make support accessible and inclusive to a broad range of autistic people, the option for attendees to engage in-person, online or in hybrid formats should be considered. Second, if delivering support online, the use of breakout rooms should be carefully considered. While participants appreciated the opportunity to meet different people, some participants found the unpredictability and lack of scaffolding associated with breakout rooms challenging. To mitigate these challenges, groups could be pre-determined and shared with the attendees in advance (although consideration should be given to how the groups 'fit' together, and whether groupings should be changed at set intervals). Gentle warnings should also be given to those in breakout rooms, to alert them of the need to re-join the main group. Finally, support with technological aspects relating to engagement should be prioritised.

Access to employment: A comparison of autistic, neurodivergent and neurotypical adults' experiences of hiring processes in the United Kingdom.

LAY ABSTRACT: Autistic people are less likely to have a job than non-autistic people. One reason for this may be that hiring processes (e.g. job applications, interviews) can be challenging for autistic people. To better understand the experiences of hiring processes in the United Kingdom, we asked 225 autistic, 64 neurodivergent (but not autistic) and 64 adults with no reported area of neurodivergence questions about their experiences using an online survey. We found a range of similarities and differences in responses. For example, participants in all three groups were frustrated with the focus on social skills in recruitment and said they wanted more practical methods (e.g. work trials) that help them show their skills and abilities. Autistic and otherwise neurodivergent participants discussed the importance of the environment (e.g. the interview/assessment room) in improving experiences. Participants also discussed how employers can impact whether somebody decides to disclose their diagnosis or needs - or not. Autistic people experienced some barriers to successful recruitment that non-autistic people did not. For example, autistic people felt they had to hide their autistic traits to gain employment and many autistic people were worried about being discriminated against if they disclosed that they were autistic during the hiring process. To make experiences better, our participants said that employers should offer candidates different recruitment methods and give them more information about the hiring process. They also said employers should improve their understanding of autism and other hidden disabilities so they know the challenges that people might face during recruitment.

Autistic adults' views and experiences of requesting and receiving workplace adjustments in the UK.

This article examines 181 autistic adults' views toward, and experiences of, requesting and receiving workplace adjustments in the UK. Using an online survey, we collected both qualitative and quantitative data relating to individuals' experiences. While the majority of participants perceived workplace adjustments to be important, many were not receiving them. Analysis of open-ended text responses highlighted specific challenges that autistic people face in requesting and receiving adjustments. Specifically, participants felt the onus fell on them to (1) identify their need for adjustments; (2) establish the specific adjustments that would be beneficial and (3) request adjustments from their employer. Yet, they reported struggling with this process. Participants also highlighted a range of social and organisational barriers to the successful implementation of workplace adjustments. Unsurprisingly, the lack of successfully implemented adjustments had far-reaching impacts on participants' wellbeing as well as the choices they made about their future employment. These findings highlight the need for employers to take a more active role in the identification and implementation of workplace adjustments, as well as a need for more understanding and inclusive working environments that truly allow autistic employees to thrive in the workplace.

Loneliness in autistic adults: A systematic review.

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.

An optimised protocol for detection of SARS-CoV-2 in stool.

BACKGROUND: SARS-CoV-2 has been detected in stool samples of COVID-19 patients, with potential implications for faecal-oral transmission. Compared to nasopharyngeal swab samples, the complexity of the stool matrix poses a challenge in the detection of the virus that has not yet been solved. However, robust and reliable methods are needed to estimate the prevalence and persistence of SARS-CoV-2 in the gut and to ensure the safety of microbiome-based procedures such as faecal microbiota transplant (FMT). The aim of this study was to establish a sensitive and reliable method for detecting SARS-CoV-2 in stool samples. RESULTS: Stool samples from individuals free of SARS-CoV-2 were homogenised in saline buffer and spiked with a known titre of inactivated virus ranging from 50 to 750 viral particles per 100 mg stool. Viral particles were concentrated by ultrafiltration, RNA was extracted, and SARS-CoV-2 was detected via real-time reverse-transcription polymerase chain reaction (RT-qPCR) using the CDC primers and probes. The RNA extraction procedure we used allowed for the detection of SARS-CoV-2 via RT-qPCR in most of the stool samples tested. We could detect as few as 50 viral particles per 100 mg of stool. However, high variability was observed across samples at low viral titres. The primer set targeting the N1 region provided more reliable and precise results and for this primer set our method had a limit of detection of 1 viral particle per mg of stool. CONCLUSIONS: Here we describe a sensitive method for detecting SARS-CoV-2 in stool samples. This method can be used to establish the persistence of SARS-CoV-2 in stool and ensure the safety of clinical practices such as FMT.

Autistic parents' views and experiences of talking about autism with their autistic children.

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).

Supporting Newly Identified or Diagnosed Autistic Adults: An Initial Evaluation of an Autistic-Led Programme.

Sixteen adults (diagnosed or self-identified as autistic) participated in one of two iterations of a ten-week autistic-led programme, aimed at helping autistic adults learn more about autism within a peer group context. Motivations for taking part in the programme included a desire for: (1) exploration of autism; (2) empowerment; and (3) the development of practical strategies and coping mechanisms. Interviews were conducted upon completion of the programme and again 6 months later. Using thematic analysis, three themes were identified: (1) appreciation of the autistic-led nature of the programme; (2) unity in diversity; and (3) developing a positive, practical outlook on autism. These promising initial results highlight the value of autistic-led peer support for those recently diagnosed/identified as autistic.