Laura Crane

Good careers guidance supports young people's transition from education to employment. Yet little is known about how this guidance is provided to autistic young people in special schools. We aimed to elicit caregivers' views and experiences of the careers guidance process, in relation to their autistic young people in special schools in England. In this study, 85 caregivers completed an online survey about the careers guidance process for their autistic young person and their own involvement in the process. Twenty of these caregivers also participated in detailed semi‐structured interviews about their, and their children's, experiences with the careers guidance process. We found that caregivers valued careers guidance tailored to their young people's needs, yet many felt this was overshadowed by limited, and often uninspiring, post‐school options. They also described being expected to take on a significant role in the guidance process, often without adequate support. While willing to contribute, caregivers raised concerns about equity and the ways in which burnout can constrain their capacity for involvement. Our findings highlight the need for more comprehensive and targeted support for caregivers as they engage with the careers guidance processes, alongside more creative and meaningful ways of helping autistic young people to imagine and pursue future possibilities. We propose potential strategies to address these areas, to ensure that careers guidance truly works for autistic young people.

Open data has been promoted as a tool to improve the transparency, robustness, and efficiency of scientific research. However, the perspectives of participant communities, particularly those who are marginalised, are often overlooked in discussions around open data. This paper examines, for the first time, the views of autistic adults and parents of autistic people regarding open data practices in autism research. Thirty interviews were conducted, which considered participants’ views on different degrees of openness of research data, and the factors that would influence their level of comfort with their and/or their child’s data being shared. Pre-registered reflexive thematic analysis that interrogated power dynamics in the participants’ statements led to the development of two themes: (1) Narratives of, and created by, Research, and (2) Vulnerability and Risk in Research Participation. These themes reflected how the impacts of open data were experienced both individually and collectively. Participants acknowledged the potential benefits of open data for knowledge generation and improving services, but also expressed concerns about misuse, re-identification, and harmful narratives from secondary researchers that they had not engaged with. The findings highlight the importance of meaningful engagement with participant communities to ensure ethical and transparent open data practices, and for researchers to ensure that they make participants fully aware about the nature of the data sharing agreements they are entering (using genuinely accessible information documents). These insights have relevance and applicability to not only autism research, but also any scholarship involving marginalised populations making decisions about open data.

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.

Background: Identifying interventions for developing language skills in autistic people is a top research priority. To develop effective language interventions, it is essential to understand whether community members feel they are important, acceptable, and meaningful. The aim of our research was to elicit views from members of the autism community on language and language interventions for autistic people. Methods: Our diverse team (comprising those with lived and professional experience of autism and/or language interventions) achieved our goals using an online survey. Via opportunity sampling, we recruited 356 participants including autistic adults, parents of autistic children, and professionals/researchers working with autistic people. Data were thematically analyzed. Results: Participants recognised the importance of language for self‐advocacy, societal participation, interacting with others, and expressing needs, feelings and desires. Language was seen as a potential tool for communication, but one of crucial importance in navigating a world designed for non‐autistic people. Responses also strongly emphasised the importance of language interventions being focused on autistic people's individual needs, that benefit them, allow them to be their authentic selves, and prioritise choice and agency. Conclusion: Our research highlights the importance of including community voices in the development of language interventions. Future language interventions should be individualised to a person's needs and wishes, respect autistic people's identity, and support self‐advocacy. Subsequent work should ensure that seldom‐heard voices are centered in such discussions.

There has been longstanding interest in active learning and its potential benefits for supporting higher education students to direct their own learning and participation. However, little is known about if and how the existing active learning literature applies to autistic learners. In this paper, we examine the interplay of factors impacting the accessibility of active learning for autistic students, reflecting on how autism and autistic students themselves are perceived and positioned within active learning frameworks. We underscore the importance of engaging with what it means to be an autistic active learner and the hurdles they may face when navigating active learning environments, including inaccessible spaces, communication differences and institutional structures. Our analysis identifies three key areas that shape autistic access to active learning: (1) Agency and identity; (2) Communication styles and learning environments; and (3) Neuro-normative systems and structures. We conclude by calling for greater development of, and continued support for, empowered autistic learner identities and neuro-affirming, student-led learning environments. We also highlight the importance of meaningfully involving autistic people in co-designing alternative (or adapted) approaches to active learning, so that autistic students are better able to guide their own learning and participation in higher education.

Autism research has predominantly focused on Western contexts, with limited studies in Vietnamese cultural settings. Through conducting a systematic scoping review, we aimed to map (a) the landscape of autism research in Vietnamese cultural contexts, (b) the quality of the research, and (c) the extent of autism community involvement in the research. A total of 137 studies met our inclusion criteria. A growing body of literature pertained to autism in Vietnamese cultural contexts, largely conducted in Viet Nam (87%). Much of the literature focused on Services and Supports (39%), as well as Interventions (20%). Key themes identified from the research were the centrality of family, the importance of school and education, and identifying a cause of autism. Quality appraisals of the studies – using the Mixed Methods Appraisal Tool, a Westernised tool – indicated that the studies were largely of low quality. There was limited autism community involvement in the research, with studies often lacking an explicit description of the nature of community involvement. Priority areas for future research include better understanding how rigour is understood in a Vietnamese research context, improving the clarity of data reporting and actively involving the Vietnamese autism community in the research process. Lay Autism research has mostly focused on Western contexts, with few studies in Vietnamese cultural contexts. In this study, we reviewed all the research we could find on autism in Vietnamese cultural contexts, to map out what this research ‘looks like’. We found 137 studies on autism in Vietnamese cultural contexts, and most of this research was conducted in Viet Nam. The studies were often focused in the areas of Services and Supports as well as Interventions. Looking for common themes in the research, we found that studies emphasised the importance of family, the importance of school and education, and the need to find the causes of autism. We used the Mixed Methods Appraisal Tool, a Westernised tool, to evaluate the quality of the research, and we found that a lot of the research was rated as ‘low quality’. There were few examples of clear autism community involvement in the research. Key areas for the field to focus on in the future include reflecting on how the quality of the research is evaluated in Global South countries such as Viet Nam, and how best to include the autism community in the research process.

Friendship has been identified as an important way to support autistic adolescents’ social, emotional and cognitive development. However, research examining autistic adolescents’ friendships has tended to use methodologies inaccessible to children with complex communication and learning needs. We examined the friendship experiences of 12 autistic adolescents (aged 12–15 years) with complex communication and learning needs who attended a specialist school. Using reflexive thematic analysis, we identified two themes. Within the first theme of ‘reconceptualising friendship’, the adolescents identified friends who evoked strong emotions and connection, without distinguishing between positive or negative interactions, or the standard boundaries of friendship. ‘Friendships’ with adults were also highlighted. Within the second theme of ‘the context dependent nature of connection’, the adolescents’ descriptions of friendship communicated a preference for engagement via physical play in spaces that facilitated such interaction. Our findings underscore the importance of directly eliciting the views of autistic adolescents with complex communication and learning needs. They also highlight the value of facilitating opportunities to build social connection with peers and adults through physical play and activities that provoke strong emotions within a safe and contained context. Lay Friendship plays a key role in helping autistic young people develop: socially, emotionally and cognitively. However, much of the research on friendships among autistic children and young people has overlooked those with complex communication and learning needs, using methods that are not accessible to them. As a result, their views on friendship have often been underreported. We investigated the friendship experiences of 12 autistic adolescents, aged between 12 and 15 years, who have complex communication and learning needs and attend a specialist school. By using methods that were adapted including visual resources, the children were able to share their views on friendship. Our two main findings were (1) children identified friends who evoked strong emotions and connection, without distinguishing between positive and negative interactions or the standard boundaries of friendship; and (2) children’s descriptions of friendship communicated a preference for physical play in spaces that facilitated this. They also identified the need for space within structured settings. Our research gave the children the opportunity to identify their friends and express their preferences, offering important insights for future studies. These results highlight the value of supporting autistic children to build social connections by providing opportunities for active play and exploration of strong emotions within safe and familiar settings.

Recognising and understanding that a child might be autistic is an important first step in the autism diagnostic pathway. For many families, this process involves working alongside school staff and, in England, this tends to be led by the Special Educational Needs Coordinator (SENCO). Existing research highlights the importance of how and when clinical professionals disclose an autism diagnosis to parents, yet there is limited knowledge on how SENCOs might broach initial interactions with parents earlier in the process. In the current study, we used a qualitative survey with 105 SENCOs in England, to understand how they work with parents at this critical point. Using reflexive thematic analysis, seven themes were identified, which were organised into areas that SENCOs felt they did and did not have control over in relation to their interactions with parents. Specifically, SENCOs highlighted the need for preparation when speaking with parents, alongside the importance of a personalised approach, where they truly listened to parents and aimed to move into alignment with them (all factors perceived to be under their control). SENCOs also discussed the need for additional support and training for working with parents, the importance of the ethos around how the school approaches inclusion, and the need for education and health to work together (all factors perceived to be outside their control). Implications for practice are discussed.

There is growing awareness among professionals in schools that pupils’ sensory needs can impact on their wellbeing, motivation, and learning. As mainstream schools strive to meet the needs of increasingly diverse groups of learners, practices such as the use of sensory rooms, fidget toys, and quiet zones have become more widespread. However, the evidence base behind these adaptations is fairly limited, and schools may be unsure of how to implement these practices. This chapter is jointly written by a school-based practitioner and an academic researcher, who worked together to implement and evaluate one such practice: the use of flexible seating as a whole-school adaptation in a mainstream primary school. In the chapter, we consider the different elements underpinning the success of our project, including the importance of collaboration between academics and school professionals. We highlight the crucial involvement of different stakeholders in research and practice, with a particular focus on how we centred the pupils’ voices throughout the different stages of our project. Finally, we share some of the findings and recommendations from our learning, discussing how flexible seating can be a beneficial adaptation to meet the sensory needs of both neurodivergent and neurotypical learners.

Background: Loneliness is a major public health concern, affecting individuals’ mental and physical health. Autistic adults self-report higher levels of loneliness compared with non-autistic adults, yet their lived experiences of loneliness remain underexplored. We conducted an online survey of autistic adults in the United Kingdom, to examine this issue further. Methods: Two hundred and three autistic adults completed our online qualitative survey. We asked participants to define loneliness, and to explain how loneliness affects them, how they manage feelings of loneliness, what helps them overcome loneliness, and if (or how) their experiences of loneliness change over time. We used reflexive thematic analysis to analyze the data, and an autistic researcher led the data analysis process. Results: We identified four primary themes (encompassing eight subthemes): (1) Internal conflict between the desire for, and barriers to, social connection, (2) barriers to connection for autistic adults (such as sensory environments, lack of societal understanding and acceptance of autism, and lack of shared understanding and experiences), (3) importance of meaningful relationships (including connecting with similar others, spending time with pets/animals, and reliance on one person while fearing the loss of that person), and (4) coming to terms with the realities of autistic experience by accepting one’s autistic identity and no longer resisting the experience of loneliness. Conclusions: Our findings show that autistic adults face dilemmas as they try to balance their desire for social connection with their limited energy for engaging in social experiences. Our results also highlight the societal and environmental factors that contribute to loneliness in autistic people, such as a perceived lack of acceptance of autistic differences. Finally, we identified potential ways to alleviate loneliness among autistic adults (e.g., connecting with similar others and understanding oneself). Community Brief: Why is this an important issue?: Loneliness can have a negative impact on a person’s mental and physical health. Autistic adults experience high levels of loneliness compared with non-autistic adults. However, little research has examined autistic adults’ firsthand experiences of loneliness. What was the purpose of this study?: We aimed to better understand the firsthand experiences of loneliness among autistic adults, given the gap in the existing published literature. What did the researchers do?: We conducted an online survey involving 203 autistic adults from the United Kingdom. We asked them to define loneliness, and to explain how loneliness affects them, how they cope with loneliness, and if (or how) their experience of loneliness changes over time. An autistic researcher led the analysis using a technique called reflexive thematic analysis, which involves looking for patterns within a dataset. What were the results of the study?: We found four main themes that describe autistic adults’ experiences of loneliness. First, autistic adults reported feeling tensions between their desire for social connections and the difficulties they experienced in achieving such connections. Second, our participants elaborated on the many and varied barriers to achieving social connections, including disabling sensory environments, a lack of societal understanding and acceptance of autism, and challenges in finding and connecting with similar others. Third, autistic adults emphasized the importance of finding and maintaining meaningful relationships, whether through connecting with others who share similar experiences, or spending time with pets or animals. Autistic adults also tended to report relying heavily on one close person, even though this strategy was accompanied by a fear of losing that person. Finally, our participants discussed the need to come to terms with the reality of the autistic experience of loneliness, through a process of accepting one’s autistic identity and by no longer resisting the autistic experience of loneliness. What do these findings add to what was already known?: This study highlights that a key aspect of loneliness for autistic adults involves a conflict between their desire for social connections and the barriers they face in realizing these connections. This work expands existing knowledge by emphasizing several crucial aspects of the autistic experience. First, autistic adults discussed the frustration involved in wanting social connections while needing to manage their limited energy for engaging in social connections. Second, autistic adults reported that feelings of not fitting in or not being understood/misunderstood, coupled with a lack of societal understanding and acceptance of autism, underpin loneliness in autistic adults. Third, autistic adults reported that connecting with similar others and accepting one’s autistic differences help lessen loneliness. What are potential weaknesses in the study?: Our sample may not be representative of the broader autistic population. For example, participants largely identified as White and were able to communicate verbally. Conducting an online survey also excluded individuals without internet access, and likely focused on those with online community connections. How will these findings help autistic adults now or in the future?: Our findings suggest that the avoidance of social interactions does not necessarily reflect autistic adults’ reluctance to engage, but rather their need to manage social exhaustion to protect their well-being. As such, these findings challenge widely held assumptions about autistic people. The findings also have important clinical implications, in terms of supporting autistic adults who seek support for loneliness.