Elizabeth Pellicano

Background: Participatory research, which involves community members as partners rather than merely research subjects, has gained prominence in autism research. However, the extent and nature of participatory approaches across the field remain unclear. Methods: We conducted a mapping review of autism research reporting community involvement, searching six databases. We coded who was involved, at what level, and in which research activities, and examined factors associated with participation. Results: We identified 382 studies published between 2001 and 2023, with 95% published in the past decade. Two-thirds (67%) involved Autistic people, though one-third claiming to be “participatory” excluded them entirely. The most common participation level was consulting (31%), with community-led (5%) and community-controlled (1%) research remaining rare. Community involvement concentrated in study design (73%) rather than analysis (33%) or dissemination (29%). Participatory research was heavily concentrated in Western countries (USA, UK, Australia, Canada: 86%), applied research areas, and qualitative studies. Deeper participation was associated with identity-first language use and publication in journals with clear community-centered agendas. Conclusions: While participatory language is increasingly becoming the norm in autism research, genuine power-sharing between researchers and community members is still a rare occurrence. Most participatory research operates at consultative levels, with academic researchers retaining primary decision-making authority. Moving toward authentic participation requires systemic changes to funding structures, institutional policies, and epistemic hierarchies that determine whose knowledge counts.

There is a lack of understanding of how research activity in learning disability compares with community research priorities in the United Kingdom, where an estimated 1.5 million people live with a learning disability. Using Down syndrome (DS), Fragile X syndrome (FXS) and Williams syndrome (WS) as model conditions with learning disability, we address this gap. We present a systematic review of UK research funding and journal articles on DS, FXS, and WS from 2013 to 2022 (Study 1; research portfolio), and a survey consultation with UK community representatives ( N = 452; people with DS, FXS, and WS, parent/carers, practitioners, researchers) of research priorities and their reflections on the research landscape (Study 2). We report a dominance of DS, FXS, and WS research on basic science and less emphasis on research with direct application to daily life. Community representatives expressed dissatisfaction with the current research portfolio. Top research priorities related to: treatments and interventions; health; mental health; services; and lifespan issues. This indicates that the current research portfolio is misaligned to community priorities. Future research should strive to be more closely aligned to these.

Purpose: 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. Methods: 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. Results: 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. Conclusion: 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.

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.

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 Lots 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.

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.

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.

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 There 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.

Background: Autism genetics has historically attracted a substantial proportion of autism research funding internationally. However, more recently, several controversies centered on ethical conduct and lack of community consultation have emerged. This has triggered Autistic-led protests for the functional and meaningful inclusion of Autistic voices in the research design. Methods: We collaborated with Autistic people, their allies, and other stakeholders concerned with Autistic outcomes to cocreate a qualitative study investigating individuals’ perceptions of autism genetics. We spoke to 33 Australian Autistic people, their families and supporters, and autism professionals in a series of codesigned semi-structured interviews ( n = 20), focus groups ( n = 2 groups), and qualitative surveys ( n = 7). Interviewees were predominantly women (79%), White (67%), held postgraduate qualifications (i.e., master’s, doctorate) (36%), and received their autism diagnosis or self-diagnosed in adulthood (where applicable, 93%). Many interviewees held multiple intersecting roles across the Autistic and autism communities. We transcribed their data verbatim and analyzed these within a critical realist framework using reflexive thematic analysis. Results: Community members reported concerns about the eugenic potential of genetics research and how it perpetuates negative attitudes about autism and Autistic people. Interviewees felt a sense of disillusionment and distrust toward the field stemming from persistent failure of autism researchers to integrate community needs within its aims. Some believed that while genetics knowledge could hold health benefits for the Autistic community, these could only be achieved through trust-building and improved engagement of Autistic voices in this research. Conclusion: Findings highlight the diverse community perspectives on autism genetics research within Australia, capturing how genetic studies are perceived to ignore the wants, needs, and priorities of Autistic people and their supporters. These insights offer a unique opportunity to reevaluate the trajectory of autism genetics research into the future, with a strong call to action from participants to embed Autistic voices in a functionally meaningful way at all levels and stages of knowledge generation.