Specialist Autism Research Articles

How can we do authentic co-construction with autistic secondary pupils?

Purpose of the research: Co-constructed digital storytelling methods have the potential to provide authentic children’s perspectives for planning health and education support. The Our Stories project investigated how this method can be applied with autistic children and young people (CYP). A year-long sub-project supported four autistic CYP in a mainstream secondary school in the UK to create short videos illustrating how they manage their sensory and emotional experiences during the school day. The CYP were supported by a member of the Special Educational Needs and Disabilities team, a specialist autism teacher, a researcher, and filmmakers from a disability-led community interest company. This paper reflects on how we can authentically co-construct digital stories with autistic secondary pupils. Major findings: We identified two broad messages for genuinely participatory research. The first was how the structure of sessions changed, from an initial assumption of imposing structure to achieve the research aims to the negotiation of a messy, more fluid means of working to suit the CYP’s needs and wishes. Second was a change in the intended purpose of the stories, from a product to support reflection and understanding about emotional regulation, to each CYP’s own unfolding of purpose. Conclusion: We draw out general implications for co-construction in participatory research in terms of awareness of how to work with power relations in ways that keep the young person at the centre of analysis, and which recognise the need for space for CYP to construct their own meanings.

Practice‐focused reflections on adaptive behaviour assessment in autism specialist education

AbstractAdaptive behaviour is crucial for well‐being and independence. The Adaptive Behaviour Assessment System (ABAS‐3) is often used to plan individualised support in specialist educational settings, drawing on both teacher and parent informants. In practice, however, little is known about the extent of variation between informants. We examined informant discrepancies in a naturally occurring dataset of 28 ABAS‐3 assessments (21 male, seven female), performed by teachers and by parents post‐admission at an autism specialist school. We found that in real‐life practice, teachers rated the adaptive functioning capabilities of their students significantly more highly than parents across all ABAS‐3 domains, a discrepancy significantly greater than validation studies with this instrument, and interestingly, non‐uniform across domains. The magnitude of this discrepancy was largest in the Conceptual domain, where differences between informants were greater in older children. The skill area most affected was ‘self‐direction’, which includes aspects of executive function. Existing guidance for adaptive functioning assessment in specialist education is extremely limited; while considering potential sources of informant discrepancy, our findings corroborate the need for further guidance on the use and scope of tools like the ABAS‐3 in educational settings. While such discrepancies may confound population‐level data, individually, these skills may be indicative of greater need to support generalisation across contexts, and may indicate the particular skill areas that are most amenable to intervention.

Measuring self and informant perspectives of Restricted and Repetitive Behaviours (RRBs): psychometric evaluation of the Repetitive Behaviours Questionnaire-3 (RBQ-3) in adult clinical practice and research settings

BackgroundBrief questionnaires that comprehensively capture key restricted and repetitive behaviours (RRBs) across different informants have potential to support autism diagnostic services. We tested the psychometric properties of the 20-item Repetitive Behaviours Questionnaire-3 (RBQ-3), a questionnaire that includes self-report and informant-report versions enabling use across the lifespan.MethodIn Study 1, adults referred to a specialised adult autism diagnostic service (N = 110) completed the RBQ-3 self-report version, and a relative or long-term friend completed the RBQ-3 informant-report version. Clinicians completed the abbreviated version of the Diagnostic Interview for Social and Communication Disorders (DISCO-Abbreviated) with the same adults as part of the diagnostic process. For half of the assessments, clinicians were blind to the RBQ-3 ratings. We tested internal consistency, cross-informant reliability and convergent validity of the RBQ-3. In Study 2, a follow-up online study with autistic (N = 151) and non-autistic (N = 151) adults, we further tested internal consistency of the RBQ-3 self-report version. We also tested group differences and response patterns in this sample.ResultsStudy 1 showed good to excellent internal consistency for both self- and informant-report versions of the RBQ-3 (total score, α = 0.90, ω = 0.90, subscales, α = 0.76-0.89, ω = 0.77-0.88). Study 1 also showed cross-informant reliability as the RBQ-3 self-report scores significantly correlated with RBQ-3 informant-report scores for the total score (rs = 0.71) and subscales (rs= 0.69-0.72). Convergent validity was found for both self and informant versions of the RBQ-3, which significantly correlated with DISCO-Abbreviated RRB domain scores (rs = 0.45-0.54). Moreover, the RBQ-3 scores showed significantly weaker association with DISCO -Abbreviated scores for the Social Communication domain, demonstrating divergent validity. Importantly, these patterns of validity were found even when clinicians were blind to RBQ-3 items. In Study 2, for both autistic and non-autistic groups, internal consistency was found for the total score (α = 0.82-0.89, ω = 0.81-0.81) and for subscales (α = 0.68-0.85, ω = 0.69-0.85). A group difference was found between groups.LimitationsDue to the characteristics and scope of the specialist autism diagnostic service, further testing is needed to include representative samples of age (including children) and intellectual ability, and those with a non-autistic diagnostic outcome.ConclusionsThe RBQ-3 is a questionnaire of RRBs that can be used across the lifespan. The current study tested its psychometric properties with autistic adults without intellectual disability and supported its utility for both clinical diagnostic and research settings.

Improving Emergency Department Care for Suicidality in Autism: Perspectives from Autistic Youth, Caregivers, and Clinicians.

In this pilot study, we conducted semi-structured interviews with 17 key members of the autism community (i.e., autistic youth with a history of suicidality, caregivers of autistic youth with a history of suicidality, autism specialist clinicians, ED clinicians) to inform the development of recommendations for modifying ED care for autistic patients, with a focus on suicide risk screening and management. Participants reported on challenges they encountered receiving or providing care and/or recommendations for improving care. Participant perspectives were aligned, and four main categories emerged: accounting for autism features, connection and youth engagement in care, caregiver and family involvement, and service system issues. As research continues in the development of autism-specific suicide risk assessment tools and management strategies, it is essential we better equip providers to address suicide risk in autistic patients, particularly in ED settings.

Investigating “social time” in autism to develop a smartphone app: a co-produced consultation with specialist psychologists and psychotherapists

Purpose Although increased social time is associated with healthier lifestyles, autistic people often present in therapy with social time difficulties. Given the growing interest in digital interventions and their applicability for autistic individuals, a social time app could be beneficial to support autistic people to manage social time, but there is limited research in this field, especially that which involves people with lived experience. The purpose of this study was to use co-production to conduct consultations with expert clinicians about the relationship between autism and social time, and the future development of a smartphone app to monitor and support social time in autistic people. Design/methodology/approach A qualitative methodology investigated clinicians’ views on the relationship between autism and social time and potential development of a social time app. Clinicians (N = 8) participated in semi-structured interviews facilitated by a researcher with lived experience of autism. Findings Participants were psychologists and psychotherapists from a specialist autism service. Thematic analysis identified factors associated with social time, such as differences with neurotypical populations, need for balance with non-social time and gender differences. According to participants, advantages of social time were connecting with people and forming relationships, whereas challenges were limited social skills, anxiety and anger and frustration. Suggested features of an app were a user-friendly design, psychoeducational components and prompts and reminders. Potential advantages of the app were support outside of therapy, support in therapy and monitoring emotional responses, whereas challenges were task completion and personalising content. Originality/value Findings reinforce the importance of a balance between social and non-social time for autistic people, which could be monitored and supported using a social time app. Clinicians could incorporate use of this app within psychological therapies to support emotional regulation and general functioning.

Using mobile health technology to assess childhood autism in low-resource community settings in India: An innovation to address the detection gap.

Autism is diagnosed by highly trained professionals- but most autistic people live in parts of the world that harbour few or no such autism specialists and little autism awareness. So many autistic people go undiagnosed, misdiagnosed, and misunderstood. We designed an app (START) to identify autism and related conditions in such places, in an attempt to address this global gap in access to specialists. START uses computerised games and activities for children and a questionnaire for parents to measure social, sensory, and motor skills. To check whether START can flag undiagnosed children likely to have neurodevelopmental conditions, we tested START with children whose diagnoses already were known: Non-specialist health workers with just a high-school education took START to family homes in poor neighbourhoods of Delhi, India to work with 131 two-to-seven-year-olds. Differences between typically and atypically developing children were highlighted in all three types of skills that START assesses: children with neurodevelopmental conditions preferred looking at geometric patterns rather than social scenes, were fascinated by predictable, repetitive sensory stimuli, and had more trouble with precise hand movements. Parents' responses to surveys further distinguished autistic from non-autistic children. An artificial-intelligence technique combining all these measures demonstrated that START can fairly accurately flag atypically developing children. Health workers and families endorsed START as attractive to most children, understandable to health workers, and adaptable within sometimes chaotic home and family environments. This study provides a proof of principle for START in digital screening of autism and related conditions in community settings.

Initial diagnostic impressions of trainees during autism evaluations: High specificity but low sensitivity.

Reducing the age of first autism diagnosis facilitates access to critical early intervention services. A current "waitlist crisis" for autism diagnostic evaluation thus demands that we consider novel use of available clinical resources. Previous work has found that expert autism clinicians can identify autism in young children with high specificity after only a brief observation; rapid identification by non-experts remains untested. In the current study, 252 children ages 12-53 months presented for a comprehensive autism diagnostic evaluation. We found that junior clinicians in training to become autism specialists (n = 29) accurately determined whether or not a young child would be diagnosed with autism in the first five minutes of the clinic visit in 75% of cases. Specificity of brief observations was high (0.92), suggesting that brief observations may be an effective tool for triaging young children toward autism-specific interventions. In contrast, the lower negative predictive value (0.71) of brief observations, suggest that they should not be used to rule out autism. When trainees expressed more confidence in their initial impression, their impression was more likely to match the final diagnosis. These findings add to a body of literature showing that clinical observations of suspected autism should be taken seriously, but lack of clinician concern should not be used to rule out autism or overrule other indicators of likely autism, such as parent concern or a positive screening result.

"He's shouting so loud but nobody's hearing him": A multi-informant study of autistic pupils' experiences of school non-attendance and exclusion.

Children and young people on the autism spectrum frequently report a range of negative educational experiences and face disproportionally high rates of school non-attendance, including school avoidance and permanent exclusion, which can have a significant impact on their well-being as well as educational and broader life outcomes. To date, few studies have examined the full range of proximal (child, parent/family, school levels) and distal (community and society levels) barriers to ensuring the school attendance and the inclusion of autistic pupils. The current study sought to do just that by examining autistic young peoples' school non-attendance and exclusion experiences from the perspectives of multiple informants. We recruited 12 autistic pupils, who had previously experienced school avoidance and/or exclusion, from one local authority in England, United Kingdom. We conducted semi-structured interviews with the young people themselves, ten of their parents, eight of their current teachers and nine local authority professionals, including six educational psychologists and three specialist autism teachers. We analyzed interviewees' responses using reflexive thematic analysis. Interviewees gave overwhelmingly negative accounts of autistic pupils' school non-attendance and exclusion experiences. Our analysis identified a range of school-related factors they felt led to, or exacerbated, negative experiences in their former mainstream schools, and which ultimately led to their or their children's school non-attendance. It also went further to identify distal factors, including fragmented educational experiences, parents "fighting" against a complex bureaucratic system to secure appropriate education for their children, and limited professional involvement. Our findings emphasize the importance of examining the broader context in which autistic pupils are embedded and demonstrate that such pupils are able to successfully attend-and even enjoy-school when they receive the appropriate care and support. Schools and local authority professionals should seek to work in partnership with parents and autistic pupils to secure the necessary support for their inclusion in mainstream education. Government policy should support the provision of sufficient local authority professionals to adopt a more proactive approach to mitigate autistic pupils' avoidance of and exclusion from school.

A data-driven validation of mobile-based care (mCARE) project for children with ASD in LMICs

In this study, we have validated the aims of the NIH project mCARE (mobile-based care for monitoring the milestone and behavioral parameters for children with ASD) by data-driven techniques. This project was developed and deployed for remote monitoring of the data on the development of children with ASD in the remote setting in the Low-and-Middle-Income-Countries (LMICS). mCARE was deployed for two years among 300 children with ASD in Bangladesh’s four specialist autism care centers. Initially, mCARE’s had three aims to monitor the development of children (with ASD) development: (a) develop and deployment the mCARE app, (b) develop and deployment the mCARE data management platform, and (c) increase the ASD knowledge among the caregiver of the children with ASD. In this paper, we will evaluate and describe these three aims based on the two years of data from the mCARE project. After analyzing the data, we can conclude that this mCARE project could apply both the LMICs and developed countries for remote monitoring the children with ASD and increasing collective knowledge among the caregivers. • Measures efficacy of the Mobile-based Care application (mCARE) by collecting behavioral and milestone data from 300 children with ASD. • Data-driven proof for mCARE’s aims. • Determines the participants’ satisfaction level in this study. • Suggests mCARE as an effective tool for monitoring children with ASD.

Exploring antecedents and outcomes of restricted and repetitive behaviours in autistic children: A thematic analysis of teacher interviews

BackgroundRestricted and repetitive behaviours (RRBs) are a core diagnostic feature in autism, but have received less research compared to other diagnostic areas. Qualitative research with autistic adults has reported both positive and problematic aspects of RRBs, but little qualitative research has been reported to date about the nature and outcomes of RRBs in autistic children. The present study recruited teachers in SEN schools because children have limited ability to self-reflect and report about the functions and outcomes of their behaviours. MethodsThe current study recruited 11 Special Educational Needs (SEN) teachers based in specialist autism schools who were interviewed about the various RRBs and their observed antecedents and outcomes for autistic children in their schools. ResultsThematic analysis revealed two main themes about RRBs in autistic children, one view as positive and one as negative. The positive theme included subthemes of RRBs as enjoyable experiences, self-regulation, and a form of expression. The negative theme included subthemes of being potentially unsafe, disrupting learning, and having a compulsive nature. ConclusionsSEN teachers in the present study observed both positive and negative outcomes of RRBs by autistic children, consistent with reports by autistic adults about their RRBs. The views about positive outcomes challenges previous assumptions that RRBs in autistic children are inherently detrimental and always need to be reduced or eliminated. Instead, the risks of specific RRBs should be considered against their benefits for individual autistic children to differentiate RRBs that serve a positive functional purpose versus those that may be harmful.

Continuité historique entre autisme et idiotisme : exploration d’une correspondance sémiologique

AimSome autism specialists locate idiocy as the historical origin of the disorder, implying that it would be a phenomenon present throughout the ages, but only correctly diagnosed today. In resonance with this hypothesis, the increase in the prevalence of Autism Spectrum Disorder is explained by different theories. It could be linked either to an improvement in the diagnostic approach and better identification of the disorder, or to a bio-psycho-social context favoring its appearance, or to an extension of the diagnostic criteria and a modification of the classifications. The purpose of this article is to explore the validity of these different hypotheses, drawing on a historical comparison of clinical descriptions of idiocy and autism. Material and methodsIn order to establish this semiological correspondence, we will identify the clinical descriptions from the era of idiocy written by Edouard Séguin, “l’instituteur des idiots” (the schoolmaster of idiots), and will compare them with those of the autism in the DSM-5. Then, we will look at the historical process of other diseases that may be responsible for mental retardation and potentially associated with idiocy. ResultsThe overlap between idiocy and autism is striking, especially with lack of communication skills, lack of eye contact, psychomotor characteristics, attachment to routines, extreme sensory reactions, and non-standard skills. DiscussionThis correspondence could demonstrate the continuity of the diagnostic entity over time between idiocy and autism, but could just as well be the result of a bias in interpretation. Some diseases responsible for mental retardation observed by the alienists of Séguin's time have been identified as having a biological and genetic origin. For some of them, treatments have been found and have led to their disappearance. It appears that the population identified with idiocy in the 19th century does not correspond to the population currently diagnosed with autism. ConclusionThis correspondence may be partly valid, but it seems mainly biased by the omission of some diseases that have been forgotten or removed from the psychiatric field, by the fact that their biological etiology has been identified.

Data-Driven Decision Support for Adult Autism Diagnosis Using Machine Learning

Adult referrals to specialist autism spectrum disorder diagnostic services have increased in recent years, placing strain on existing services and illustrating the need for the development of a reliable screening tool, in order to identify and prioritize patients most likely to receive an ASD diagnosis. In this work a detailed overview of existing approaches is presented and a data driven analysis using machine learning is applied on a dataset of adult autism cases consisting of 192 cases. Our results show initial promise, achieving total positive rate (i.e., correctly classified instances to all instances ratio) up to 88.5%, but also point to limitations of currently available data, opening up avenues for further research. The main direction of this research is the development of a novel autism screening tool for adults (ASTA) also introduced in this work and preliminary results indicate the ASTA is suitable for use as a screening tool for adult populations in clinical settings.

ECHO Autism: Early Intervention Connecting Community Professionals to Increase Access to Best Practice Autism Intervention.

Autism spectrum disorder (ASD) is estimated to affect 1 in 44 children in the United States. Disparities exist related to socioeconomic, racial/ethnic and geographic demographics. Due to the shortages of autism specialists in diagnosis, treatment and education for people with ASD, novel approaches to improve access to best practices are needed to ensure quality services. ECHO Autism: Early Intervention clinic consists of biweekly sessions focused on early identification and management of evidence-based practices for young children with ASD. It is an adaptation of the ECHO Autism clinic that has been proven effective for primary care providers. The clinic provides a safe, virtual learning environment where diverse professionals who work with children at risk or diagnosed with ASD can collaborate and learn together. ECHO Autism: Early Intervention bridges the care gap between autism specialists, community intervention providers, and children with autism to increase capacity for autism intervention best practices in underserved communities. Through participation in this convenient, web-based small group, the providers get specific case guidance on children at risk or diagnosed with autism and share best practices for autism specific interventions. Finally, the clinic connects participants with community resources, and family/caregiver support. In our article, we address the current challenge of access to quality early intervention specific to ASD in rural and underserved communities and how this issue can be addressed through a virtual ECHO Autism clinic. The aim of this concept article is to describe the innovative ECHO Autism: Early Intervention clinic and discuss its benefits and impact in the field.

'We've come a very, very, long way' Overcoming stigma of autism: An interpretative phenomenological analysis within the UK Jewish community.

Autistic people contend with high levels of stigma in many cultures worldwide. There is a scarcity of literature on stigma in relation to autism in faith communities and virtually no research focussing on this topic in Jewish communities. In this study, we aimed to explore experiences of stigma towards autism and sought views on what steps have and can be taken to reduce such stigma. Using an interpretative phenomenological analysis approach, we conducted semi-structured interviews with 10 participants within the UK Jewish community, in both mainstream and specialist autistic schools. Interviews were conducted over 2 months in 2020. During analysis, 5 superordinate (central) themes and 13 subordinate themes were abstracted. Superordinate themes included ‘Stigma not specific to the Jewish community’; ‘Considerable strides made’; ‘More a lack of knowledge or denial than stigma’; ‘Fear of stigma is a real concern but not widely prevalent’; and ‘Potent factors that reduce stigma in the Jewish community’. We recommend workshops for greater awareness and training for teachers and parents on autism and autistic children’s experiences. We also recommend the formation of specialist autism schools in other communities and promotion of positive narratives concerning autistic people, as this successfully reduced stigma within the Jewish community.Lay abstractAutistic people contend with high levels of stigma in a wide array of cultures worldwide. There is a scarcity of literature on stigma in relation to autism in faith communities, with some limited research on this issue in Christian, Muslim and Hindu populations. There is virtually no research focussing on this topic in Jewish communities and to our knowledge, none at all within UK Jewish contexts. In this study, we aimed to explore experiences of stigma towards autism and sought views on what steps have and can be taken to reduce such stigma. Using an interpretative phenomenological analysis approach, we conducted semi-structured interviews with 10 participants within the UK Jewish community, including parents, rabbis, SENDCos, teachers, and headmasters of autistic children in both mainstream and specialist autistic schools. Interviews were conducted over 2 months in 2020. During analysis, 5 superordinate (central) themes and 13 subordinate themes were abstracted from the data. Superordinate themes included ‘Stigma not specific to the Jewish community’; ‘Considerable strides made’; ‘More a lack of knowledge or denial than stigma’; ‘Fear of stigma is a real concern but not widely prevalent’; and ‘Potent factors that reduce stigma in the Jewish community’. We recommend workshops for greater awareness and training for teachers and parents on autism and autistic children’s experiences. We also recommend the formation of specialist autism schools in other communities and promotion of positive narratives concerning autistic people, as this successfully reduced stigma within the Jewish community.

Understanding the support experiences of families of children with autism and sensory processing difficulties: A qualitative study.

BackgroundSupport, such as information, advice and therapies, can play a vital role in the lives of families of autistic children. However, little is known about the support experiences of UK parents and carers.AimTo explore experiences of and access to support for families of children with autism and sensory processing difficulties, from the perspective of parents and carers.MethodsSemi‐structured, timeline‐assisted interviews were conducted with parents/carers of 30 children aged 5–11, exploring experiences of support. Framework analysis was used to identify themes in the interview data.ResultsSupport varied widely and was not accessed equitably. Specialist autism support, together with support from other parents and voluntary organizations, was perceived as more useful than statutory and nonspecialist provision. Unmet support needs included an ongoing point of contact for information and advice for parents, and access to direct therapy and specialist mental health provision for children.ConclusionsFindings emphasize the need for a clear pathway of support following autism diagnosis, autism‐specific training for professional service providers and specialist provision tailored to the needs of autistic children.Patient or Public ContributionAn advisory group of four parents of children with autism provided feedback on study procedures and materials, including participant information sheets and timeline completion instructions.

Elaboration of a Framework for Assessment of IT-based Interventions in the Field of Autism Disorder

Elaboration of a Framework for Assessment of IT-based Interventions in the Field of Autism Disorder

The Effectiveness of RAADS-R as a Screening Tool for Adult ASD Populations.

Adult referrals to specialist autism spectrum disorder diagnostic services have increased in recent years, placing strain on existing services. It was proposed that the Ritvo Autism Asperger's Diagnostic Scale could be used as a screening tool, in order to identify and prioritise patients most likely to receive an ASD diagnosis. This study evaluates the validity of the RAADS-R as a screening tool for ASD in an adult population. Retrospective case note analysis was used to evaluate the efficacy of the RAADS-R as a screening tool to predict ASD diagnostic outcomes in 50 service users of a NHS specialist autism service. Results indicate no association between RAADS-R scores and clinical diagnostic outcome, suggesting the RAADS-R is not an effective screening tool for identifying service users most likely to receive an ASD diagnosis. In conclusion, used as a self-report measure pre-full diagnostic assessment, the RAADS-R lacks predictive validity and is not a suitable screening tool for adults awaiting autism assessments. Future research should aim to identify reliable screening tools for this purpose.

Adapting services for autism: Recommendations from a specialist multidisciplinary perspective using freelisting

The guidance available for tailoring mental health services for autistic people is limited and dispersed. Practitioners attempting to appropriately adapt mental healthcare and therapy provision report low confidence and inconsistency in their approach. This study contributes to the guidance by providing a shortlist of usable and priority adaptations for diagnostic and therapy services as described by multidisciplinary staff members responsible for the design and delivery of a specialist autism service in the UK. Individual freelisting interviews were conducted with 15 staff, who were asked to list the ways that they adapt their practice individually, within therapy, and collectively as a service. Salience and cultural consensus analyses demonstrated the following agreed priority service adaptations: ensuring the suitability of the service environment with consideration of sensory demands, adapting communication, knowing individual gender identity preferences and minimising client uncertainty. Detailed examples are given for flexibly adapting therapy to individual needs to inform general and specialist services. The findings require replication and evaluation.

Autism diagnosis as a social process.

The diagnosis of autism can be challenging, particularly if an individual coming for assessment is considered to be near the diagnostic threshold. It is important to understand the experiences and challenges of diagnosis from the perspective of clinicians. In this study, 21 in-depth interviews were conducted with clinicians working in specialist autism assessment teams in adult and children’s services in England. Interviews were recorded and transcripts were analysed thematically. We identified four themes that represented how clinicians were frequently engaged with juggling their own professional understanding of what autism is with other factors such as the results of standardised tests and the views of patients and carers, in the context of limited resources: institutional pressure, making diagnosis make sense, seeing through an autism lens and just tools. The study illuminates the diagnostic process as a socially situated activity. We suggest that an examination of the benefits and drawbacks of assessment services specialising in autism only, the resources they require to operate effectively, and how they operate in the context of wider health services would be appropriate and timely.Lay abstractWhen a child or adult is referred for an autism diagnosis, clinicians from different backgrounds work together to make a diagnostic decision. A few studies have asked clinicians in interview how they feel about diagnosis and what the challenges are. We interviewed clinicians in child and adult assessment services in England, and from different professional backgrounds, about the challenges of autism diagnosis and the factors that might influence the assessment process. We found that there were a number of challenges in autism diagnosis, especially when someone coming for diagnosis was considered to be near the diagnostic threshold. Clinicians told us that making a diagnosis was like creating a ‘narrative’: looking at many different factors that told a story about a person, rather than just looking at the results of diagnostic tests. Clinicians do not always agree with the results of those tests and have to use their specialist clinical judgement to make decisions. Clinicians were concerned about the amount of time people have to wait for an autism assessment, and the resulting pressure on the assessment process. The findings of this work can help us to understand how diagnosis happens and consider ways in which it can be improved for adults, children and families coming for assessment, as well as clinicians.

Revisiting vitamin D status and supplementation for inpatients with intellectual and developmental disability in the north of England, UK

AimsVitamin D deficiency is common among people with Intellectual and Developmental Disability (IDD) and is linked to worse health outcomes.Our aims were to re-evaluate vitamin D testing and supplementation among inpatients with IDD, examine any correlates with physical health conditions including COVID-19 and make recommendations for the current regime of supplementation and testing within inpatient IDD services.MethodThe study population comprised inpatients who were in any of the Northgate Hospital IDD inpatient services in Northumberland, UK. The wards sampled were the Medium Secure Unit, Low Secure Unit, Hospital Based Rehabilitation Wards and Specialist Autism Inpatient Service. Records of all inpatients between January 2019 and July 2020 were examined for 25-hydroxyvitamin D [25(OH)D] level, ward area, supplementation status, test seasonality, medication, and health status.We performed a correlation to see whether there was an association between vitamin D level and length of time on treatment. In addition, comparison of the replete and inadequate group for age, ethnicity, seasonality, ward location and psychotropic medication was undertaken.Data on physical health risk factors, obesity and COVID-19 infection were also collected. The physical comorbidities were described in order to evaluate whether any emerging patterns relating to COVID-19 infection were emerging.ResultThere were 67 inpatients in Northgate IDD services on 1 January 2019, with 11 further patients admitted up to the end of the sampling period on 31 July 2020. Nineteen patients were discharged during that period, so the sample comprised 78 patients.Ages were comparable across three of the ward areas, except for an older group of patients in the hospital-based rehabilitation setting. Mean 25(OH)D level for supplemented (800IU/day) patients was 75nmol/l (SD 20) compared to 40nmol/l (SD 19) in the non-supplemented group (p < 0.001).Thirty-eight percent of those who were inpatients during the first wave of the COVID-19 pandemic developed symptoms, but the small sample size could not establish vitamin D levels as a predictor of outcome.ConclusionOur findings show that clinicians continue to offer vitamin D supplementation for inpatients, at a dose of 800IU (20μg) per day.The mean vitamin D levels we observed were higher for those on supplements compared to our 2013 baseline data, whereas patients not on supplementation now had levels akin to those found previously. Vitamin D (800IU/day) supplementation is effective but adequacy of the nationally recommended dose of 400IU/day is unclear. Links to COVID-19 merit further research.