Research on genetic syndromes is vital to our understanding of how development unfolds, but the rarity of genetic syndromes can mean that studies are carried out with small sample sizes. Small sample sizes can reduce the statistical power of a study to produce reliable and replicable results. Here, we review all UK journal articles on three target genetic syndromes published from 2013 to 2022. There were 368 eligible articles. The median sample size of genetic syndrome groups was N = 30, and only 6.5% of articles reported a power analysis. Power analysis was performed on the 123 articles classed as 'Cognitive' research, as a test case. This demonstrated an average power of only 54% for a medium effect size and an alpha of 0.05. This is well below the recommended threshold of 80% power. The low power of UK genetic syndrome research has consequences for the replicability of the field due to the risk of Type II errors and reduced precision in effect size estimates, as well as implications for the communities that this research seeks to serve. We provide suggestions for researchers, journal editors and funders for improving the replicability of the field of genetic syndrome research.
The autistic and autism communities have identified improving the quality of life and well-being of autistic people as a key priority. Despite this, to date, there are no evidence-based supports for autistic children which specifically focus on improvements in these areas. This project seeks to address this gap by evaluating the acceptability and feasibility of Bloom, an 8-week co-produced and co-facilitated parent group that aims to enhance the quality of life and well-being of young autistic children. This is a feasibility and acceptability study of a parent group, Bloom, which has been co-designed and co-produced between researchers and representatives from community organisations. The study aims to recruit 80 parents of autistic children aged 3–8 years through community organisations and social media networks. Once informed consent is provided, participants will be asked to complete baseline assessments (questionnaires and semi-structured interviews). These include measures of demographic as well as child, family, and parent well-being. Participants will be invited to attend the Bloom group for eight consecutive weeks during school term times. Groups will either be online or face to face, depending on parent preference and availability. Each group will be co-facilitated between an autistic person and an allied health professional. The assessments conducted at baseline (T1) will be repeated after completion of the group (T2) and at follow-up, 3 months after group completion (T3). At T2 and T3, participants will also be asked about their experiences of both the group and of their participation in the study. This feasibility and acceptability trial will provide essential data that, if positive, will inform the design of a fully powered randomised controlled trial (RCT). This includes the acceptability and feasibility of recruitment, study processes, the Bloom parent group, and baseline/outcome measures, including adherence to processes and the group. Additional data will be collected on retention from baseline to follow-up; effect sizes will be calculated for each outcome measure, both of which will inform the sample size of a future RCT. Findings of this study will be disseminated through written and/or audiovisual lay summaries to all participants and partner community organisations, as well as through peer-reviewed manuscripts and conference presentations. This study is one small, but important, step towards autism-specific, relevant, and accessible supports that combine professional and lived experience to improve outcomes for autistic people and their families. Ethical clearance was provided by Griffith University Human Research Ethics Committee (HREC 2023/934). The Universal Trial Number is U1111-1305-0305, and the study has been registered with the Australian New Zealand Clinical Trials Registry (ANZCTR) number ACTRN12624000350527.
Abstract People with intellectual disabilities and their communities are rarely involved in setting priorities for research. Our study addressed this gap through consultations with the UK communities of three genetic syndromes in which intellectual disabilities are common: Down syndrome (DS), Fragile X syndrome (FXS) and Williams syndrome (WS). The study aimed to provide an understanding of (1) the views of the DS, FXS and WS communities on current UK research; (2) their priorities for future research; and (3) participants’ views of engaging with UK research. We conducted focus group discussions with 39 community members including: children and adults with DS, FXS and WS; parent/carers of people with DS, FXS and WS; practitioners and researchers who work with these communities. Our study was carried out in collaboration with a Steering Group and two Advisory Groups of DS, FXS and WS community members. We identified three themes. First, participants shared their dissatisfaction with the current research landscape and wanted a more balanced landscape, with more research with direct application to the daily lives of people with DS, FXS and WS. Second, community members emphasised the importance of translating research into practice, advocating for better access to research and more meaningful participation to research of individuals with lived experience. Third, our study not only identified what should be the focus of future research on DS, FXS and WS, but also how researchers should conduct their research. Whilst including children in our sample was a strength, there were some limitations to the diversity of our sample; children with FXS were not represented and gender, ethnic and geographic diversity could have been broader. Nevertheless, we hope that our findings will change the future of research in this field so that research carried out in the name of individuals with intellectual disabilities such as DS, FXS and WS, is of direct use to these communities.
In existing literature, an Autistic child's "externalising behaviour" (e.g., aggression, defiance) is often associated with poor parental mental health outcomes. Yet few studies have considered the extent and nature of the impact of a child's harmful behaviours (physical harm to self, others, and property) on parents qualitatively. Here, we examined how Autistic and non-autistic parents conceptualise their Autistic children's harmful behaviours, and the impact of such behaviours on parents. We analysed 39 Autistic and non-autistic parent interviews using reflexive thematic analysis, from which we identified four themes. Theme 1 encompassed parents' experiences of their children's harmful behaviours. Theme 2 captured parents' explanations for their children's harmful behaviours, which they understood as indicating intense distress. In Theme 3, parents reflected on their responses to periods of crisis, during which they prioritised safety but acknowledged a systemic lack of support hindered their efforts. Finally, Theme 4 describes the detrimental impacts on parent mental health, including feelings of helplessness, grief, guilt, and fear for the future. We show that it is imperative to more openly discuss child harmful behaviours in neuroaffirming ways, to develop responsive and appropriate parental and familial supports, which acknowledge the role of guilt and trauma in parental mental health.Lay AbstractLots of research suggests that an Autistic child's so-called "externalising behaviour" (like aggression or defiance) has a negative impact on that child's parents' mental health. But, so far, very few studies have talked directly to parents about why and how they experience distress because of their child's externalising behaviours. In this study, we interviewed 39 Autistic and non-Autistic parents of Autistic children, to better understand their experiences of specific externalising behaviours. For this study, we were particularly interested in children's "harmful behaviours," which we defined as violence towards self, others, and/or property. We wanted parents to tell us in their own words what their experiences of such harmful behaviours were, how they understood these periods of crisis, what they did to respond to their children's harmful behaviours, and what they felt about the behaviours. When we analysed parents' responses, we came up with four main ideas or "themes." Parents saw harmful behaviours as a combination of child self-harm, suicidal behaviour, and physical violence to their parents, siblings, and property (Theme 1). But parents did not necessarily blame their child, instead understanding that their child's behaviour was likely an indication of intense or extreme distress or dysregulation (Theme 2). Parents wanted to keep their whole family safe, but they found they had limited options to do this, and they felt there was little or no support to help them during crises (Theme 3). Unfortunately, parents expressed lots of different emotions, like helplessness, grief, guilt, and fear, as a result of their child's harmful behaviours (Theme 4). We need to understand better what is happening in families, how they are responding, and what support they need to cope so that we can help families who are experiencing these kinds of crises. This article addresses these questions.
IntroductionAutistic young people and/or those with attention deficit hyperactivity disorder (ADHD) who have co-occurring mental health conditions experience significant challenges when transitioning from child and adolescent mental health services (CAMHS) to adult mental health services (AMHS). However, barriers and facilitators to this service transition are poorly understood for this population. This scoping review aims to synthesise the available evidence on barriers and enablers to the transition from CAMHS to AMHS for autistic young people and/or those with ADHD.Methods and analysisArksey and O'Malley’s six-step framework for scoping reviews will be used. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist will guide the reporting of this review. Electronic databases of Medline, PsycINFO, CINAHL, Scopus, ProQuest Central and Google Scholar will be searched for relevant articles published in English with no date limitations. Title, abstract and full-text screening will be completed by two independent reviewers. Studies will be eligible for inclusion if the article focuses on (1) adolescents and/or young people (aged 18–24) with a primary diagnosis of autism spectrum disorder and/or ADHD (population) and (2) describes factors associated with service or care transitions (concept) (3) from CAMHS to AMHS (context). Study quality will be evaluated using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields. Data describing the factors that enable or inhibit the transition from CAMHS to AMHS will be extracted and synthesised using the Bronfenbrenner’s social ecological model as a framework for organising and reporting results.Ethics and disseminationEthics approval is not required. Findings will be disseminated via peer-reviewed publications and presented at conferences.Trial registration numberhttps://doi.org/10.17605/OSF.IO/BZPQF.
The term ‘inertia’ refers to the seemingly common Autistic experience of remaining in a state of rest or a state of motion until there is some form of external intervention. While a heavily discussed phenomenon in the Autistic community, it has been scarcely acknowledged in the academic literature. The present study aimed to advance knowledge of Autistic inertia by analysing a large qualitative sample of naturalistic discourse on the topic from Autistic online communities on the social media platform, ‘Reddit’. We identified 501 relevant posts shared between 2005 and 2023, including 9,955 comments. We analysed the posts using reflexive thematic analysis with an inductive approach. We identified four themes, centred on the “all or nothing” extremes of inertia (Theme 1), the range of factors that intersect with and exacerbate it (Theme 2), its joyful and often highly-disabling impacts (Theme 3), and the varied ways in which Reddit users manage it (Theme 4). Our findings corroborated those from existing interview-based studies and also uncovered additional insights, elaborating on ‘the vicious cycle’ of inertia, its fatiguing effects and its interaction with other commonly co-occurring conditions. We discuss these less-reported experiences and identify what we know - and are still yet to understand - about the key features of Autistic inertia. Analysing 501 Reddit posts, this study reveals the cyclical nature of Autistic inertia, its fatiguing effects, links to co-occurring conditions, and coping strategies – moving closer to a formal definition and highlighting urgent research and support needs.
Abstract Autistic people can find social interactions difficult to navigate, traditionally attributed to difficulties in taking others’ perspectives. However, we have a limited understanding of how autistic people integrate self and other information efficiently during social decision-making. We conducted four highly powered experiments (total N = 1,621) to determine whether autistic traits affect two aspects of self-other integration during social decision making: self-bias and social basis function use. Using Bayesian analyses, we found strong support for the absence of a relationship between autistic traits and either aspect of social decision making, even after controlling for potential confounds (BF 01 = 32.13 for self-bias, BF 01 = 7.04 for social basis function use). Our results indicate that variations along autistic traits do not impact how people prioritise self-relevant information (self-bias) or utilize compressed social patterns of interaction (social basis function use) to guide their decisions about oneself and other people. These findings nuance the conceptualisation of social-cognitive processes across autistic traits while highlighting the need for large samples to validate null effects.
Research on mental visual imagery typically relies on vividness ratings. However, vividness is ill defined as it lacks an objective reference. Here, we present survey results that suggest vividness is nevertheless a robust measure. It explains individual differences of a broad range of subjective experiences, from the detail of mental imagery, the propensity to report having other internally generated visual experiences and the vividness of visual dreams. Critically, simple vividness ratings can replace the protracted questionnaires commonly used for this purpose and reduce methodological issues with these instruments. We further find that vividness is closely linked with the experience of 'seeing' mental images or projecting them into the external world. People who report seeing mental images with their eyes shut are also more likely to experience externally projected imagery. Nevertheless, many people report having mental depictions but without seeing. Overall, our results indicate we should redefine visual aphantasia to distinguish individuals with faint or unseen visual images from those completely lacking a pictorial representation.
Quality of life (QoL) is a subjective construct, influenced by an individual’s values, priorities and goals, yet little research considers the views of Autistic children regarding what is important for living a 'good life'. In this study 42 Autistic young people (aged 10-17 years) shared what is important for their QoL through written or spoken responses in either a survey or interview. Data were analysed together using reflexive thematic analysis. Five themes were identified that described what is important for Autistic young people’s QoL: (1) I need others to understand me and "accept me for who I am"; (2) Connecting deeply with others is "integral to my happiness"; (3) Through my strengths and passions, "I feel a sense of achievement" and I develop self-worth; (4) Having agency to navigate my environments "in ways that work for me" helps me manage my own needs; (5) When "people ask me what I want to do, and they listen", I feel valued and empowered. This study adds to the literature regarding the conceptualisation of QoL for Autistic young people, by eliciting directly the views of Autistic young people. The findings describe what is important to Autistic young people, and tangible supports that enable them to live a 'good life'.
Background: Although research has begun to examine the experiences of parents who are themselves Autistic, our understanding of Autistic parents' perceptions of themselves as Autistic parents remains limited. While studies have documented the unique challenges Autistic parents face, and some have sought to capture the quality of Autistic parent-child relationships, few have sought to understand how Autistic parents parent Autistically. Methods: Here, 40 Autistic parents of Autistic children completed semistructured interviews to answer the questions: what characterizes Autistic parents' experiences of parenting, and how do Autistic parents conceptualize an Autistic approach to parenting? Participant responses were analyzed using reflexive thematic analysis, employing an inductive approach. Results: We developed three themes, encompassing the challenges and affordances of being an Autistic parent, and the parenting strategies that Autistic parents employed. The parents in this study identified challenges when their own Autistic needs differed from their child's. They spoke about the difficulties of parenting with alexithymia and the toll of perfectionism and rumination, which were exacerbated by external stigma and judgment (Theme 1). Yet, being Autistic also brought benefits, and parents felt that sharing an identity with their Autistic child, judgment-free curiosity, and a passionate interest in parenting and autism, all fostered loving connections with their children (Theme 2). Finally, parents spoke of ways of engaging with their children that they felt were uniquely Autistic, including being honest and vulnerable with their children, listening to their children and respecting their autonomy and dignity, and resisting conventional parenting approaches that did not suit Autistic needs (Theme 3). Conclusion: We show that, while Autistic parents undoubtedly face challenges, they can also perceive themselves to be excellent parents, with specific strengths and strategies that benefit their child. Our findings are vital for researchers and clinicians to support Autistic parents to mitigate specific challenges and to flourish as parents.
There has been limited research into what helps to promote autistic children's quality of life. This qualitative study, co-produced with autistic people, aimed to identify, from multiple perspectives, what helps autistic children to live a 'good life'. We conducted semi-structured interviews with autistic adults (n = 28) and parents of autistic children (n = 29). Using reflexive thematic analysis, we identified four themes: Being accepted by others in a way that allows the child to be themselves; Finding 'the things that light [the child]'; Having a sense of control over their own life and Physical/sensory environments matter. All themes were common to both autistic adults and parents of autistic children, with the exception of one sub-theme, which was predominantly driven by autistic adults' responses. These findings highlight potential pathways to support autistic children's quality of life now and into the future.Lay AbstractThere hasn't been much research about what helps autistic children to live a 'good life' or to have a good quality of life. This makes it difficult to know how to help autistic children to do so. In this study, we asked autistic adults and parents of autistic children what they thought helped autistic children to live a 'good life'. They mentioned four important areas. These were (a) autistic children being accepted as their real or true self, (b) autistic children finding the things that they enjoy and that energise them, (c) autistic children having a sense of control in their life and (d) physical environments that suit autistic children's sensory needs. These are things that can be changed in the autistic child's environment to support the autistic child in living a good life.
The prevalence of mental health conditions is increasing globally, with mental health difficulties the leading cause of disability for young people aged 12 to 25 years. Neurodivergent young people are up to three times more likely to develop a co-occurring mental health condition, requiring formal support from childhood to adulthood. They also experience delayed access to adult mental health care once they have been discharged from child mental health services. This study aimed to investigate what could support neurodivergent young people to transition from child to adult mental health services. This qualitative research made use of a constructivist grounded theory approach. Three participant groups were recruited for this study, including 12 neurodivergent young people, 6 caregivers, and 5 healthcare professionals. Semi-structured interviews were used as the primary source of data with a follow-up workshop. We identified three themes. Across all three groups, participants emphasised that the care delivered by healthcare professionals is constrained by the structures of the mental health system, thereby limiting the level of neuro-affirming care they can implement. These limitations made the informal support that parents and caregivers provided more critical in assisting them with the service transition. This study provided new insight into what could support neurodivergent young people to transition from child to adult mental health services. The findings in this study highlight the need to develop both provider- and system-level capacity to better support this service transition, to reduce the burden on neurodivergent young people and their informal supports.
Background: Contact-based interventions, where individuals share their lived experiences of mental health difficulties and recovery, appear effective in reducing stigma. Objective: This study examined the effectiveness of a brief digitized contact-based intervention in reducing mental health stigma and improving help-seeking intentions in young adults. The study also sought a deeper understanding of the perspectives of young adults toward the contact-based intervention. Methods: A mixed methods study, using quantitative and qualitative analyses, examined mental health public stigma, self-stigma, and help-seeking attitudes in undergraduate psychology students (N=328) before, immediately after, and 1 week following the contact-based intervention, compared to an active control. The intervention comprised a brief video (8 min) of a mental health consumer sharing their lived experience of mental health difficulties and their recovery. Participants were invited to participate in a subsequent semistructured interview (n=12) that further explored their perspectives on the contact-based intervention. Results: Relative to control participants, those in the intervention group reported small improvements in mental health public stigma and help-seeking intentions using formal sources of help; however, this was not maintained at 1-week follow-up. There was limited evidence that the intervention improved self-stigma or help-seeking intentions using informal sources of help. Improvements in self-stigma were not evident following the intervention, but were observed 1 week later. Additional exploratory analyses showed that participants with high mental distress were more likely to provide negative evaluations of the intervention in terms of the helpfulness of the videos, relatability to the speaker, and showed a decrease in their desire to seek help from friends and family following the videos, compared to those with low mental health distress. Conclusions: Although this brief digitized contact-based intervention holds promise as an easily disseminated strategy for young adults to reduce mental health public stigma and improve formal help-seeking intentions, these effects show that overall improvements in public stigma and formal help-seeking intentions were short-lived. Furthermore, the potential negative impact of the intervention on informal help-seeking intentions in those with high mental health distress suggests a need to tailor interventions for young adults with high levels of anxiety or depression. The study has important implications for designing brief contact-based interventions and what young adults would benefit from the most over time. Trial Registration: ISRCTN Registry ISRCTN65081246; https://www.isrctn.com/ISRCTN65081246
Aphantasia is characterised by an inability to have volitional imagined sensations. While initially characterised as an inability to visualise, Aphantasia is now regarded as having a multisensory profile, that can manifest in inabilities to have imagined sensations of sound, smell, taste, touch and of bodily sensations. Aphantasia has repeatedly been linked to autism - a neurodevelopmental condition that can shape how a person interacts with others and experiences the world. The strength of this association may, however, have been overstated due to how autism is typically operationalised in empirical studies. To address this concern, we recruited a sample (N = 327) of participants who all self-reported having a formal diagnosis of autism. We found that members of this autistic group generally reported having less salient imagined experiences than a comparison group, but Visual Aphantasia was not more prevalent in the autistic group. However, a greater proportion of the autistic group did report being unable to have imagined sensations of smell and of taste. These associations were primarily driven by questions relating to people's ability to have imagined sensations, but they were also driven by questions relating to non-verbal communication. Overall, our data suggest that associations between autism and multisensory Aphantasia are weak, particularly for visual imagery. However, poor face processing skills are common to both autistic people and to Aphantasics, and this could either be a cause or a marker of difficulties with non-verbal communication skills that encourage a weak association between multisensory Aphantasia and autism.
Bodily autonomy is essential to Autistic well-being. Interoception supports bodily autonomy through guiding behavior in support of homeostasis. Promoting adaptive interoceptive skills is therefore crucial to improving Autistic well-being. To date, research on interoception in Autistic people has been poorly informed by the experiences and goals of Autistic people, has had a narrow focus on comparison with non-autistic norms in search of deficits, and has had limited impact on Autistic quality of life. In this perspective piece, a team of Autistic and non-autistic researchers review findings to date and make recommendations for future research directions. We argue that participatory research is needed to comprehensively map the varied interoceptive landscape of Autistic people, ensure that new interoceptive measures are autism-relevant, and guide interventions designed to improve the interoceptive and broader well-being of Autistic people. We believe that if interoception research is conducted in partnership with the autism community, the understanding of interoceptive processing and the full range of interpretive differences that result will be impactful and informative.
Background:People with ADHD disproportionately experience depression and anxiety across the lifespan than people without. To date interventions have focused on managing ADHD. This study aimed to evaluate the effectiveness of therapies designed to alleviate depression and anxiety. Methods:We used linked electronic healthcare records of over 3 million adults over 18 years old who received a course of therapy in NHS Talking Therapies for depression and anxiety in England between 2012 and 2022. We identified a cohort of N = 13,693 adults with diagnosed ADHD and calculated pre-post effect sizes (Cohen's dav). We then identified a propensity-matched comparison group of N = 13,693 adults without diagnosed ADHD, and conducted logistic regressions to compare outcomes between the two groups; and ran exploratory subgroup analyses to evaluate whether known associations between therapy outcomes and socio-demographic factors were modified by ADHD diagnosis status. Findings:On average, people with ADHD experienced moderate-to-large reductions in their depression (pre-post effect size Cohen's dav = -0.72 [95% CI -0.75 to -0.70]) and anxiety (Cohen's dav = -0.72 [95% CI -0.74 to -0.69]) symptoms between before, and after therapy. People with ADHD had poorer therapy outcomes, regardless of matching and adjustment for covariates (Reliable improvement from depression and anxiety symptoms: OR = 0.77, 95% CI 0.73-0.81, Reliable recovery: OR = 0.69 95% CI 0.65-0.72, Reliable deterioration: OR = 1.38, 95% CI 1.25-1.50). There was no strong evidence that associations between therapy outcomes and socio-demographic factors were affected by ADHD status, but small sample sizes limited interpretations for older people and people from minority ethnic groups. Interpretation:People with ADHD may benefit from interventions designed to improve their mental health as opposed to managing ADHD. There is a need for evidence-based guidelines to adapt mental health interventions for this group, and a better understanding of how systemic barriers to care and diagnosis may affect outcomes. Funding:Medical Research Foundation (MRF).
Background: Gastrointestinal (GI) symptoms are common, chronic, and often disabling among autistic individuals. Research has largely focused on children, with limited attention to experiences in adulthood. Prior qualitative work highlights substantial unmet GI-related healthcare needs among autistic children, including negative care experiences and limited access to autism-informed services. Methods: Using a community-based participatory research (CBPR) framework, we conducted qualitative interviews with 26 participants (21 autistic adults, 5 parents reporting on behalf of an adult autistic child), of varying race, sexual orientation, genders, socioeconomic and educational statuses, and ages. Interviews were conducted on Zoom, ranging from 22-110 minutes long, exploring the physical, emotional, and functional impacts of GI symptoms; how these experiences relate to autism; barriers to treatment; and participants' needs and priorities for improving GI health care (priorities reported elsewhere). We conducted a reflexive thematic analysis following Braun and Clarke, using an interpretivist-constructivist epistemological stance. Coding and theme development were inductive and data-driven. Themes were refined collaboratively through repeated engagement with the data, analytic memoing, and discussion of areas of interpretive uncertainty until shared meaning and coherent thematic structure were achieved. Once the codebook and thematic structure were finalized, all transcripts were systematically coded for analysis. Results: Participants described gastrointestinal symptoms as chronic, unpredictable, and highly consequential, shaping physical functioning, emotional wellbeing, daily routines, autonomy, and social participation. Symptoms were understood as arising from interacting biological, sensory, emotional, and contextual factors, with triggers often difficult to identify or anticipate. Experiences with healthcare were frequently characterized by dismissal, communication barriers, system complexity, and prior trauma, contributing to delayed or avoided care and heightened distress. In response, autistic adults and caregivers relied on individualized, trial-and-error management strategies - including avoidance of triggers, routine and environmental planning, dietary and pharmacologic approaches, and sensory or emotional regulation - alongside social support and peer communities to cope with persistent uncertainty and limited clinical guidance. Conclusion: GI symptoms in autistic adults frequently have dramatic negative impacts on everyday life, reducing both quality of life and restricting the ability to fully engage in society and desired activities. Despite the clear magnitude of impact, knowledge and support are lacking and management remains difficult, confusing, and often unsuccessful. Improving care will require multi-layered, neurodiversity-informed approaches that recognize autistic adults as central knowledge-holders and active partners in research and clinical decision-making. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This work was supported by Autism Intervention Research Network on Physical Health (AIR-P) (PI Holingue & Faucett) and the Autism Science Foundation (ASF) (PI Holingue). This project is supported by the Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services (HHS) under award UT2MC39440, the Autism Intervention Research Network on Physical Health. The information, content, and/or conclusions are those of the author and should not be construed as the official position of, nor should any endorsements be inferred by HRSA, HHS, or the US Government. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Institutional Review Board Approval was granted by Johns Hopkins University: JHM IRB 00316729. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes The participants of this study did not give written consent for their data to be shared publicly, so due to the sensitive nature of the research supporting data is not available.
Objective: An umbrella review to synthesize the fragmented evidence on the experiences and outcomes of transitions out of school for autistic young people, including those with intellectual disability (ID), and to identify recommendations for practice, research, and policy. Methods: An integrated narrative synthesis of 25 reviews covering 435 primary studies. Findings: Reviews were generally well-conducted, but primary evidence quality was variable. Early individualized planning and collaboration were consistent facilitators. Barriers included exclusion from decision-making, fragmented coordination, and uneven access. Long-term outcomes or adverse events were rarely considered. Few reviews included ID-specific analyses or examined intersectionality. Conclusions: The evidence base remains conceptually narrow, with limited guidance on equitable transition outcomes. Recommendations: Plan with, not for, autistic young people, including those with ID and other intersecting identities. Practice, research, and policy should align to prioritize, measure, and report meaningful outcomes.
Employment contributes to well-being, yet many autistic people who want to work face barriers to meaningful employment. Much research focuses solely on employment rates, rather than taking a more holistic view of professional trajectories and occupational experiences. We conducted semi-structured interviews with 18 autistic adults to explore their experiences of, and perspectives on, career success. Our participants highlighted the overarching importance of finding fulfilment in one's career. Using reflexive thematic analysis, we identified five additional key themes: (1) volatile career journeys, (2) the need for continuing career support, (3) the impact (positive or negative) of social interactions, (4) the important role of organisations and (5) the catastrophic impact of poor experiences. Our findings highlight the importance of tailored, lifelong employment support and inclusive workplaces in enabling autistic people to thrive at work. Enabling autistic career fulfilment requires moving beyond entry-level hiring to foster sustainable, fulfilling employment for all autistic people.Lay abstract Many autistic people want to work but have trouble finding jobs they like and can stick with. Most research tries to help more autistic people get jobs, but does not look at whether those jobs are fulfilling, or how people progress once they start working. We spoke to 18 autistic people about their experiences at work, and their ideas about success at work. Participants said finding fulfilment in their careers was key. We found five common 'themes' across the interviews. First, autistic people's careers often take unexpected turns. For example, many participants only got diagnosed as adults, which sometimes changed their work plans. Second, autistic people might need ongoing help with their career, including help with finding jobs they would enjoy and be good at, and advice on how to progress in their job. Third, getting along with others at work is really important. Having supportive colleagues helped our participants thrive, but workplace bullying forced some to leave their jobs. Fourth, workplaces need to be welcoming to everybody. Adjustments and understanding managers helped, but many of our participants' workplaces were not inclusive. Finally, bad work experiences can be devastating for mental health and well-being and negative experiences like bullying led some participants to quit working entirely. Our findings show that lifelong support tailored to each person and welcoming workplaces are important for autistic people to thrive at work. It is not enough to just hire autistic people - we need to help them have jobs they like and can stick with long-term.
A diverse portfolio of social relationships matters for people's wellbeing, including both strong, secure relationships with others ('close ties') and casual interactions with acquaintances and strangers ('weak ties'). Almost all of autism research has focused on Autistic people's close ties with friends, family and intimate partners, resulting in a radically constrained understanding of Autistic sociality. Here, we sought to understand the potential power of weak-tie interactions by drawing on 95 semi-structured interviews with Autistic young people and adults conducted during the COVID-19 pandemic. We analysed the qualitative data using reflexive thematic analysis within an essentialist framework. During the COVID-19 lockdowns, Autistic people deeply missed not only their close personal relationships but also their "incidental social contact" with acquaintances and strangers. These weak-tie interactions appear to serve similar functions for Autistic people as they do for non-autistic people, including promoting wellbeing. These findings have important implications both for future research into Autistic sociality and for the design of practical services and supports to enhance Autistic people's opportunities to flourish.