Occupational Therapy and Arts Therapies
Permanent URI for this collectionhttps://eresearch.qmu.ac.uk/handle/20.500.12289/25
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Item Are we getting better at identifying and diagnosing neurodivergent girls and women? Insights into sex ratios and age of diagnosis from clinical population data in Scotland(Sage, 2025) Maciver, Donald; Roy, Anusua Singh; Johnston, Lorna; Boilson, Marie; Curnow, Eleanor; Johnstone-Cooke, Victiora; Rutherford, MarionThis study examined differences in referral and diagnosis based on sex recorded at birth (hereafter, ‘sex’), using case notes from 408 individuals diagnosed by 30 multidisciplinary teams across Scotland. Analyses focused on male-to-female ratios and median ages at referral and diagnosis across attention-deficit/hyperactivity disorder, autism and intellectual disability. The lifespan male-to-female ratio across all diagnoses was 1.31, varying by category and age. In autism, the male-to-female ratio was 2.21 for children under 10 years, but there were more females in adolescence (male-to female ratio=0.79) and adulthood (male-to-female ratio=0.94). Across the lifespan, combining all diagnoses, females were referred later (median ages: 14.4 vs 19.7 years; p<0.001) and diagnosed later (median ages: 15.2 vs 20.2 years; p<0.001), indicating a 5-year delay. Among autistic children and adolescents, females were referred later (median age: 7.5 vs 10.5years; p=0.002) and diagnosed later (median age: 9.3 vs 11.9years; p=0.003). However, no significant differences were found in age of referral or diagnosis for autistic adults. Overall, the results indicate partial equalisation of sex ratios across the lifespan, pronounced asymmetry in younger age groups, andconsistent delays in referral and diagnosis ages for females.Item The experiences of autistic professionals working in health and education: A systematic review(Mary Ann Liebert, 2025) Curnow, Eleanor; Maciver, Donald; Meff, Tamsin; Muggleton, Joshua; Johnston, Lorna; Gray, Anna; Day, Helen; Kourti, Marianthi; Utley, Izy; Rutherford, MarionItem Contextual factors influencing neuro-affirming practice – identifying what helps or hinders implementation in health and social care(SAGE Publications, 2025-09-09) Gray, Anna; Johnston, Lorna; Rutherford, Marion; Curnow, Eleanor; Maciver, DonaldThere has been limited research to date into contextual factors hindering or supporting the successful implementation of neuro-affirming practice in support for Autistic and otherwise neurodivergent adults. We used a Realist Evaluation approach to explore key contexts affecting neuro-affirming practice. A preliminary programme theory of key aspects of support was developed. Views on current practice were sought through structured interviews with 32 senior professionals in leadership roles within Health and Social Care services in Scotland. This study identified important contexts shaping the implementation of neuro-affirming practice for adults. Results indicate widespread professional support for modifying practice to better accommodate neuro-affirming ideas, and scope to achieve this. However, some contexts, including limited resources, restrictive eligibility criteria and rigid service structures, hinder progress. Growing demand for services was often viewed as a restrictive context, but it also offered a chance to rethink conventional, one-size-fits-all models and adopt neuro-affirming approaches. The study is important in addressing a current gap in research into professional perspectives of the contexts required to develop transdiagnostic, neuro-affirming approaches and pathways for Autistic and neurodivergent adults. The insights from this study may offer transferable practice approaches, applicable across different countries with similar healthcare contexts.Item Waiting Times and Influencing Factors in Children and Adults Undergoing Assessment for Autism, ADHD, and Other Neurodevelopmental Differences(John Wiley & Sons, Inc., 2025-02-24) Maciver, Donald; Roy, Anusua Singh; Johnston, Lorna; Boilson, Marie; Curnow, Eleanor; Johnstone‐Cooke, Victoria; Rutherford, MarionThis study explored waiting times and the factors influencing them in child and adult populations undergoing assessment for autism, ADHD, and other neurodevelopmental differences. The analysis focused on a retrospective review of 408 cases with assessments completed between October 2021 and May 2022, conducted by 30 diagnosing teams in Scotland. Data included age, final diagnosis, demographics, medical and developmental history, contact frequency, and assessment service adherence to best‐practice standards. Waiting times were calculated, and relationships were analyzed using linear regression. Median waiting times were 525 days (IQR 329–857) for children/adolescents and 252 days (IQR 106–611) for adults. Only 20% of children's and 47% of adult assessments met the proposed 252‐day diagnostic time target. Autism and ADHD were the most common diagnoses. Receiving > 1 neurodevelopmental diagnosis on completion was uncommon. Demographic factors did not significantly affect waiting times. Children/adolescents with more complex developmental and medical histories experienced longer waits (100.3 weeks vs. 67.7 weeks; p < 0.001), while adults with similar histories had shorter waits (32.7 weeks vs. 57.4 weeks; p = 0.016). Adults with ADHD experienced longer waits than autistic adults (63.4 weeks vs. 38.6 weeks, p = 0.002). Adherence to best‐practice quality standards was associated with shorter waits for children (β = 0.27, p = 0.002), but the relationship between standard adherence at different stages and for adults was less clear. More frequent appointments correlated with shorter adult waits (33.7 weeks vs. 59.2 weeks, p = 0.015). Gender distribution was balanced among adults, but children's services included more boys. The study highlights long waits and the need for improvement in processes.Item Learning from the experiences of autistic professionals working in health and education(Mary Ann Liebert, 2025-01-20) Curnow, Eleanor; Maciver, Donald; Johnston, Lorna; Murray, Mairead; Johnstone-Cooke, Victoria; Utley, Izy; Jenkins, Natalie; Meff, Tamsin; Muggleton, Joshua; Rutherford, MarionBackground: This study aimed to explore the experiences of autistic professionals working in the public sector in Scotland and investigate the factors that supported them in achieving employment in their chosen career. Methods: We interviewed 34 autistic adults employed in professional roles in the health and education sectors in Scotland about their successes and challenges during training, recruitment, and employment. Interview conversations of 60–90-minute duration were transcribed verbatim. The research team, which included autistic and non-autistic researchers, conducted inductive thematic analysis. Results: Resultant themes included complexity of disclosure; navigating differences in social communication and across employment stages; and control of the environment. Autistic professionals face inequalities and unsupportive environments. Participants described multifaceted decision-making processes behind choices to disclose or withhold their autism diagnosis, which could determine their right to workplace accommodations or provoke unfavorable treatment. The styles of communication preferred by colleagues could engender misunderstanding and lead to challenges negotiating social situations, recruitment processes, and organizational culture. Participants’ needs and preferences for predictability and routine required them to use strategies to overcome the negative impacts of suboptimal social and physical environments. Conclusion: Findings confirm the importance of acceptance and inclusion and demonstrate that there is a need for culture change within public sector education and health workplaces to improve accessibility. Applying minor changes to the environment and individual communication styles can enhance workplace conditions for autistic employees.Item Assistive technology: Occupational therapy assessment and services for people with dementia(SAGE, 2024-05-21) Curnow, Eleanor; Maclean, Fiona; McCormack, BrendanIntroduction: Research suggests that services are not effectively providing suitable assistive technology for people with dementia. There is a need to understand the challenges facing practitioners to identify where service changes should be focussed to improve this situation. Method: This study used an online survey to explore the experiences of 41 occupational therapists working with people with dementia, and/or assistive technology. Eight participants subsequently agreed to participate in online discussion groups. Group discussions were transcribed and checked. Data responses from group discussions and open questions in the survey were analysed thematically using the person-centred framework to identify domains supporting or obstructing effective assistive technology service delivery. Results: Forty-one occupational therapist participants described challenges to providing person-centred assistive technology services. These included restricted access to assistive technology interventions, limited knowledge regarding developments in the field, variable funding, unsupportive systems, limited relevant training and difficulties working across health and social care sectors. Conclusion: There is a need to revise the systems surrounding the provision of assistive technology for people with dementia. Occupational therapists need access to training relative to this field, and systems need to be adapted to support the provision of person-centred care by widening access to assistive technology.Item A brief neuro-affirming resource to support school absences for autistic learners: development and program description(Frontiers Media, 2024-03-22) Johnston, Lorna; Maciver, Donald; Rutherford, Marion; Gray, Anna; Curnow, Eleanor; Utley, IzyBackground: Education should be inclusive, nurturing each individual’s potential, talents, and creativity. However, criticisms have emerged regarding support for autistic learners, particularly in addressing disproportionately high absence levels within this group. The demand for accessible, person-centered, neuro-affirming approaches is evident. This paper provides a program description of a structured absence support framework, developed and implemented during and following the Covid-19 pandemic. We detail creation, content, and implementation. Methods: We collaborated with stakeholders, reviewed literature and drew on existing theoretical frameworks to understand absence in autistic learners, and produced draft guidance detailing practical approaches and strategies for supporting their return to school. The final resource was disseminated nationally and made freely available online with a supporting program of work around inclusive practices. Results: The resource is rooted in neuro-affirming perspectives, rejecting reward-based systems and deficit models of autism. It includes key messages, case studies and a planning framework. It aims to cultivate inclusive practices with an autism-informed lens. The principles promoted include recognizing the child’s 24-hour presentation, parental partnership, prioritizing environmental modifications, and providing predictable, desirable and meaningful experiences at school. Feedback to date has been positive in terms of feasibility, face validity, and utility. Conclusion: This novel, freely available resource provides a concise, practical framework for addressing absence in autistic learners by cultivating a more inclusive, equitable, and supportive educational system in which autistic individuals can thrive.Item Beyond Accommodations: Supporting Autistic Health Professionals. Practice based guide for employers and employees(National Autism Implementation Team, 2024) Curnow, Eleanor; Rutherford, Marion; Maciver, Donald; Johnston, Lorna; Utley, Isabelle; Murray, M; Johnstone-Cooke, Victoria; Muggleton, J; Jenkins, N; Gray, A; Meff, TThis guide is intended to support neurodivergent people working in the healthcare sector by providing information and practical suggestions based upon the views and preferences of neurodivergent adults. Autistic people can have poor employment outcomes, are under-represented in the workforce, and often experience discrimination and poor mental health (Buckley et al., 2021; Bury et al., 2021; Wood et al., 2022). Employment is often precarious (short term, part-time, low paid) and individuals are underemployed or overqualified for their current roles. Although, as not all autistic people are diagnosed or choose to share their autistic identity, the literature may not reflect the true picture. It is therefore important that we increase our understanding of the challenges facing autistic people not only in gaining employment but within the workforce. This study draws on the experience of autistic professionals working in health and education because professionals working within health and education are well placed to become influential positive role models (Lawrence, 2019). The guidance is based on information obtained during a review of published literature and interviews with thirty-four autistic people who work in professional roles within health and education in Scotland. They were asked about their experiences of training, recruitment, and employment, particularly factors that offered them support, and factors which challenged them. They also provided recommendations for improving training, recruitment, and employment for neurodivergent people in the future. The guide was also reviewed by people working in management and human resources roles across health and education. This guide is intended to provide information which will support neurodivergent people in employment. Often adjustments to language, mindsets and actions do not cost money and can provide benefit to the whole diverse workforce. Throughout this guide we have included direct quotations obtained during interviews with autistic professionals. This guide and the research on which it is based was conducted by a team which includes autistic and non-autistic researchers. Although our focus has been on autistic people, it is well known that most autistic people experience co-occurring mental health and neurodevelopmental differences. Similar experiences are shared by people with ADHD or who identify as neurodivergent.Item Beyond Accommodations: Supporting Autistic Professionals in Education. Practice based guide for employers and employees(National Autism Implementation Team, 2024) Curnow, Eleanor; Rutherford, Marion; Maciver, Donald; Johnston, Lorna; Utley, Isabelle; Murray, M; Johnstone-Cooke, Victoria; Muggleton, J; Jenkins, N; Gray, A; Meff, TThis guide is intended to support neurodivergent people working by providing information and practical suggestions based upon the views and preferences of neurodivergent adults. Autistic people can have poor employment outcomes, are under-represented in the workforce, and often experience discrimination and poor mental health (Buckley et al., 2021; Bury et al., 2021; Wood et al., 2022). Employment is often precarious (short term, part-time, low paid) and individuals are underemployed or overqualified for their current roles. Although, as not all autistic people are diagnosed or choose to share their autistic identity, the literature may not reflect the true picture. It is therefore important that we increase our understanding of the challenges facing autistic people not only in gaining employment but within the workforce. This study draws on the experience of autistic professionals working in health and education because professionals working within health and education are well placed to become influential positive role models (Lawrence, 2019). The guidance is based on information obtained during a review of published literature and interviews with thirty-four autistic people who work in professional roles within health and education in Scotland. They were asked about their experiences of training, recruitment, and employment, particularly factors that offered them support, and factors which challenged them. They also provided recommendations for improving training, recruitment, and employment for neurodivergent people in the future. The guide was also reviewed by people working in management and human resources roles across health and education. This guide is intended to provide information which will support neurodivergent people in employment. Often adjustments to language, mindsets and actions do not cost money and can provide benefit to the whole diverse workforce. Throughout this guide we have included direct quotations obtained during interviews with autistic professionals. This guide and the research on which it is based was conducted by a team which includes autistic and non-autistic researchers. Although our focus has been on autistic people, it is well known that most autistic people experience co-occurring mental health and neurodevelopmental differences. Similar experiences are shared by people with ADHD or who identify as neurodivergent.Item Diagnostic Assessment of Autism in Adults -Current Considerations in Neurodevelopmentally Informed Professional Learning with reference to ADOS-2(Frontiers Media, 2023-10-05) Curnow, Eleanor; Utley, Izy; Rutherford, Marion; Johnston, Lorna; Maciver, DonaldServices for the assessment and diagnosis of autism in adults in the United Kingdom have been widely criticised and there is an identified need for further research in this field. There is a call for diagnostic services to become more accessible, person-centred, neurodiversity affirming, and respectful. In Scotland, there is a need for workforce development which will increase capacity for diagnostic assessment and support for adults. ADOS-2 is a gold-standard diagnostic assessment tool for autism recommended in clinical guidelines. However, diagnostic procedures such as the ADOS-2 are rooted in the medical model and do not always sit comfortably alongside the neurodiversity paradigm preferred by the autistic community. Training and educational materials need to account for the differences between these approaches and support clinicians to provide services which meet the needs of the adults they serve. The National Autism Implementation Team work alongside ADOS-2 training providers to support clinicians in Scotland, to provide effective diagnostic assessment within a respectful environment. The team engaged with clinicians who had attended ADOS training to identify areas of uncertainty or concern. Training materials were developed to support ADOS assessors to incorporate key principles including 'nothing about us without us;' 'difference not deficit;' 'environment first;' 'diagnosis matters,' 'language and mindsets matter;' and 'a neurodevelopmental lens,' to support the provision of neurodiversity affirming practice. The National Autism Implementation Team also provided examples of actions which can be undertaken by clinicians to enhance the assessment experience. Training materials are based on research evidence and clinical experience.