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An increasing body of research suggests that bilingualism is possible and perhaps even advantageous for autistic individuals. However, several factors might influence parents' decisions about raising their autistic child bilingually, including national language policies, educational contexts, advice received from key professionals, and the child's individual strengths and needs. Accordingly, there is a clear imperative to understand how the views of different stakeholders converge and diverge when language decisions are made in the context of autism. This paper brings new insights by synthesising the findings of three qualitative studies that used interpretative phenomenological analysis (IPA) to explore the perspectives and experiences of bilingual autistic children (n = 11), parents (n = 16), and educational practitioners (n = 13) of bilingualism in autism in England and Wales. Despite wide variation between and within groups, a striking tension emerged between individuals' beliefs about bilingualism in general, which were positive, and their experiences of bilingualism in autism specifically, which often foregrounded more monolingual approaches. This paper examines this tension, with a particular focus on stakeholders' attitudes towards the feasibility of bilingualism, families' language choices in the context of autism, and how notions of contextual linguistic diversity accentuated differences between England and Wales. We conclude by arguing that greater awareness of both bilingualism and neurodiversity in educational and clinical settings may improve the experiences of bilingual autistic children and, crucially, the language advice families receive. [ABSTRACT FROM AUTHOR]

Home education is a phenomenon that has been increasing globally over the past decade, particularly for families of children with special educational needs or disabilities. The impact of the COVID-19 pandemic has exacerbated this phenomenon with many families continuing to home educate even after their children can officially return to school. This paper reports on a small-scale design-based research project that explored the needs of families who are home educating children with autistic spectrum disorder (ASD). Working in partnership with educational settings, practitioners, and families during the second year of the pandemic, academic researchers in Malaysia and England designed, implemented and evaluated a home learning pack for children with ASD aged 6–12 years old. The findings emphasised the role of economic, social and cultural capital for the families involved and how this impacted their ability to work and educate their children successfully. This raises crucial questions in relation to the place of home education within the wider international inclusive education debate and matters of social equality whilst also highlighting key questions for future research in this field on how policy and provision might develop to meet a growing diversity of need. [ABSTRACT FROM AUTHOR]

Emerging research in the UK suggests a disproportionate number of autistic adults experience homelessness. This paper reinterprets findings from a narrative study on autism and homelessness through the lens of Critical Disability Studies (CDS). Ten autistic participants who had experienced homelessness took part in narrative interviews focussing on their life history. Throughout their lives, participants experienced repeated social and economic exclusion, which ultimately led to homelessness. This paper uses CDS to examine how normative social expectations may increase risk of homelessness for autistic people. It also considers how some participants renegotiated their autistic identities and became self-advocates. Using dis/human theory, it is argued that the autism label provides a framework from which to challenge social exclusion. To reduce risk of homelessness for autistic adults, structural changes are required that reposition accepted forms of personhood. [ABSTRACT FROM AUTHOR]

Background: Co‐production is predicated on equal power‐sharing and responsibility in research partnerships. However, relatively few accounts exist that explore the subjective experience of how co‐researchers achieve such equality, from the perspectives of public contributors and researchers. Aim: This paper aims to provide a unique insight into the process of co‐production, by weaving personal reflections with principles to evaluate the impact arising from co‐produced knowledge. It is based upon participatory research that was initiated by a 'lay' person, on behalf of a community organization, seeking support for Somali families who are affected by autism. The paper explores the evolving partnerships that began with community theatre and qualitative research and leading to extensive dissemination and impact, all of which has been jointly owned and negotiated by the co‐researchers and community organizations. Discussion: Initially, this paper reflects on the process, drawing on principles defined for co‐production in health research and combining it with the co‐researcher's personal reflections of their experiences as insiders and outsiders, stepping in and out of each other's worlds. The value of reciprocity, flexibility and continuous reflection is illustrated. The latter part of the paper explores the impact of this co‐produced knowledge using a theoretical framework, to assess the specific impacts and its broader transformative potential. It demonstrates how (1) opportunities for all partners to be equitably involved to the maximum degree possible throughout the research process can affect social change and (2) co‐produced research can become a catalyst that is dynamic and complex, achieving multi‐layered impact. [ABSTRACT FROM AUTHOR]

The recent Draft Mental Health Bill for England and Wales proposes changes to the Mental Health Act 1983 which will include, for the first time, a legal definition of autism. This article explores the specific potential issue that the definition, owing to its breadth, potentially encompasses a number of conditions other than autism, consequently leaving the definitionally dependent concept of 'psychiatric disorder' significantly narrowed in scope. The potential implications of this – primarily the concern that a range of other conditions and presentations could be unintentionally excluded from the scope of the civil powers in the Mental Health Act – are discussed. [ABSTRACT FROM AUTHOR]

In the past two decades, students have been more willing to disclose their disability status when entering higher education (HE) in the United Kingdom (UK). Concurrently, higher education institutions (HEIs) have adopted disability policies and service teams for enhancing equality, diversity, and inclusion in the UK. The purpose of this integrative review is to understand the basis of these trends. The article suggests that there have been three major key paradigm shifts that underpin this cultural change. (1) There was a paradigm shift in terms of changing the dominant models for conceptualising disability from a medical model of disability to a social model of disability and to an affirmative model of disability, together with a debate and policy development demonstrating a concern for greater social inclusion and exclusion; (2) with a massive increase in students entering HE and the rising importance of league tables and ranking systems, universities experienced a paradigm shift from teacher-centred learning (TCL) to inclusive student-centred learning and teaching (SCLT); and (3) the increase in autism disclosure in HE signifies a shift in a conceptualisation of autism from a disorder to a disability and an example of neurodiversity. [ABSTRACT FROM AUTHOR]

This paper compares the incidence of the diagnosis of Autistic Spectrum Disorders (ASD) among White and Asian children with reference to data obtained from thirteen local education authorities (LEAs) in England. It begins by outlining some of the theoretical debates associated with the definition, diagnosis and prevalence of ASD. The empirical component underpinning this work uses logistic modelling to ascertain whether the proportion of children with a statement of special educational need (SEN) for ASD is different for Asian and for White children and whether the proportion of children with a statement of SEN for ASD varies between LEAs. The discussion speculates as to possible reasons for the differences found and identifies areas for further research. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic has had disproportionate impact on vulnerable populations including those with learning disabilities. Assessing the incidence and risk of death in such settings can improve the prevention of COVID‐19. We describe individuals who tested positive for SARS‐CoV‐2 while residing in care homes for learning disabilities and/or autism and investigate the risk of death compared with individuals living in their own homes. Methods: Surveillance records for COVID‐19 infections in England from 02 February 2020 to 31 March 2022 were extracted. Data on property type, variant wave, vaccination, hospitalisation and death were derived through data linkage and enrichment. Care home residents with learning disabilities and/or autism and diagnosed with COVID‐19 were identified and analysed, and logistic regression analyses compared the risk of death of individuals living in private residence. We assessed interaction parameters by post‐estimation analyses. Results: A total of 3501 individuals were identified as diagnosed with SARS‐CoV‐2 whilst living in 632 care home properties for learning disabilities and/or autism. Of the 3686 episodes of infection, 80.4% were part of an outbreak. The crude case fatality rate was 2.6% and 0.6% among care home residents with autism and/or learning disabilities and their counterparts in households, respectively. The post‐estimation analyses found over eight times the odds of death among care home residents in 60 years old compared with their counterparts living in private homes. Conclusions: Care home residents with learning disabilities and/or autism have a greater risk of death from COVID‐19. Optimising guidance to meet their needs is of great importance. [ABSTRACT FROM AUTHOR]

Background and Aims: Survey research indicates that autistic children and young people experienced high levels of anxiety and isolation during lockdowns in response to the coronavirus disease 2019 (COVID-19) pandemic. Meanwhile, qualitative studies suggest that there may have been some benefits in the switch to home learning for this population. However, the majority of evidence to date comes from parent reports; the current study aimed to triangulate the perspectives of autistic youth and their parents in order to more fully understand the impact of periods of lockdown on education, relationships, and wellbeing. Methods: Thirteen semistructured interviews were conducted (six with adolescents, seven with parents) to explore the experiences of a group of autistic youth aged 13–14 years (Year 9 of mainstream education in England) during a period of intermittent lockdown. Data were analysed using reflexive thematic analysis. Results: Two broad themes capturing commonality and diversity in the adolescents' experiences of lockdown were developed. (1) "Different stress, not less stress" encapsulates the finding that, despite the enforced removal from the school environment providing short-term relief, new stressors contributed to consistently high levels of anxiety for the young people throughout lockdown periods. Stressors included managing home-school within the family unit, navigating time without boundaries, and anxiety about the virus. (2) "A shrunken world" reflects the heightened impact of losing access to meaningful social relationships, extracurricular pursuits, and health-promoting activities for autistic youth. Discussion: The early stages of the global response to the COVID-19 pandemic caused serious disruption to education for many children and young people globally,;our findings provide further evidence that the impact was particularly salient for autistic youth in terms of social isolation, lost learning, and heightened anxiety. Implications: These findings underscore the necessity of long-term support for the education, social needs, and mental health of autistic young people in the aftermath of lockdowns in response to COVID-19. [ABSTRACT FROM AUTHOR]

Background: Autism spectrum disorder (hereafter, autism) is a common neurodevelopmental condition. Core traits can range from subtle to severe and fluctuate depending on context. Individuals can present for diagnostic assessments during childhood or adulthood. However, waiting times for assessment are typically lengthy, and many individuals wait months or even years to be seen. Traditionally, there has been a lack of standardization between services regarding how many and which multidisciplinary health professionals are involved in the assessment and the methods (diagnostic tools) that are used. The COVID-19 pandemic has affected routine service provision because of stay-at-home mandates and social distancing guidelines. Autism diagnostic services have had to adapt, such as by switching from conducting assessments in person to doing these fully via telehealth (defined as the use of remote technologies for the provision of health care) or using blended in-person or telehealth methods. Objective: This study explored health professionals' experiences of and perspectives about conducting telehealth autism diagnostic assessments, including barriers and facilitators to this, during the COVID-19 pandemic; potential telehealth training and supervision needs of health professionals; how the quality and effectiveness of telehealth autism diagnostic services can be enhanced; and experiences of delivering postdiagnostic support remotely. Methods: A total of 45 health professionals, working in varied settings across England, participated in one-off, in-depth semistructured qualitative interviews. These were conducted via videoconferencing or telephone. Altogether, participants represented 7 professional disciplines (psychiatry, medicine, psychology, speech and language therapy, occupational therapy, nursing, and social work). The data were then analyzed thematically. Results: Thematic analysis indicated the following 7 themes: practicalities of telehealth, telehealth autism diagnostic assessments, diagnostic conclusions, clinical considerations, postdiagnostic support, future ways of working, and health professionals' experiences and needs. Overall, telehealth autism diagnostic assessments were deemed by many participants to be convenient, flexible, and efficient for some patients, families, and health professionals. However, not all patients could be assessed in this way, for example, because of digital poverty, complex clinical presentation, or concerns about risk and safeguarding. Working remotely encouraged innovation, including the development of novel assessment measures. However, some participants expressed significant concerns about the validity and reliability of remotely assessing social communication conditions. Conclusions: A shift to telehealth meant that autism diagnostic services remained operational during the COVID-19 pandemic. However, this method of working has potentially affected the parity of service, with people presenting with clinical complexity having to potentially wait longer to be seen or given a diagnostic opinion. There is also a lack of standardization in the provision of services. Further research should identify evidence-based ways of enhancing the timeliness, accessibility, and robustness of the autism diagnostic pathway, as well as the validity and reliability of telehealth methods. [ABSTRACT FROM AUTHOR]

Summary: The draft Mental Health Bill, which amends the Mental Health Act 1983 for England and Wales, proposes protections for people with intellectual disability and/or autism (ID/A) to prevent detention in hospital in the absence of mental illness. This editorial critically appraises the positive impact and unintended consequences of the proposed reforms for people with ID/A. [ABSTRACT FROM AUTHOR]

Background: The epidemiology of autism in adults has relied on untested projections using childhood research.Aims: To derive representative estimates of the prevalence of autism and key associations in adults of all ages and ability levels.Method: Comparable clinical diagnostic assessments of 7274 Adult Psychiatric Morbidity Survey participants combined with a population case-register survey of 290 adults with intellectual disability.Results: The combined prevalence of autism in adults of all ages in England was 11/1000 (95% CI 3-19/1000). It was higher in those with moderate to profound intellectual disability (odds ratio (OR) = 63.5, 95% CI 27.4-147.2). Male gender was a strong predictor of autism only in those with no or mild intellectual disability (adjusted OR = 8.5, 95% CI 2.0-34.9; interaction with gender, P = 0.03).Conclusions: Few adults with autism have intellectual disability; however, autism is more prevalent in this population. Autism measures may miss more women with autism. [ABSTRACT FROM AUTHOR]

Autism affects over 2% of the school population in England. Education has proven to be an effective intervention strategy that improves the quality of life of children with autism and their families. However, governmental austerity policies have increased disadvantage in coastal areas of England with a detrimental impact on people with disabilities. This qualitative study explored the lives of families living with autism in rural coastal England. Mothers, fathers, grandparents and young people from 21 families living with autism in West Norfolk and Cornwall shared their experience through semi-structured interviews that were conducted in early 2019. Families identified positive and negative aspects of living in these areas, including barriers preventing access to and inclusion in education. Barriers were related to poor infrastructure, sparse specialised services (resulting in diagnostic delay and difficulties), limited autism awareness, lack of trained professionals, and the impact of austerity across health, social care and education. Families' struggles are amplified by the intersectionality of (a) autism-specific needs, (b) physical distance and small-community life related to rurality and (c) the seasonal and peripheral nature of coastal life. Access to education for children with autism in rural coastal areas of England could be improved by acknowledging and addressing the intersecting factors intensifying their marginalisation. [ABSTRACT FROM AUTHOR]