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 An analysis of prescribing data in attention-deficit hyperactivity disorder for adolescents and adults in Scotland(Cambridge University Press, 2024-08-08) Radley, Andrew; Melia, Barry; Maciver, Donald; Rutherford, Marion; Boilson, MarieBackground Medication, combined with environmental and psychosocial support, can mitigate adverse outcomes in attention-deficit hyperactivity disorder (ADHD). There is a need for research into regional and national prescription volumes and patterns, especially among adults. Aims This study analysed prescribing patterns for medications commonly used to treat ADHD in adolescents and adults. Method Data was extracted from the NHS Scotland Prescribing Information System on prescriptions for 7806 adolescents (aged 10–19 years) and 4998 adults (aged 20–59 years) in 2019. This included medications listed under Section 4.4 of the British National Formulary. We explored 2019 prescription patterns across different regions and estimated ADHD prevalence levels. Additionally, we assessed changes in dispensed prescriptions, defined daily dose and costs, compared with figures from 2010. Results Between 2010 and 2019, prescriptions for ADHD medications increased (dispensed prescriptions +233.2%, defined daily dose +234.9%, cost +216.6%). Despite these increases, analysis indicated that in 2019, considering a 5% estimated ADHD prevalence among adolescents, 73% were not prescribed medication, increasing to 81% at a 7% estimated prevalence. Similarly, among adults with a 2% estimated prevalence, 91% were not prescribed medication, rising to 96% at a 4% estimated prevalence. Regional disparities were evident, with 41–96% of adolescents and 85–100% of adults, based on ADHD prevalence estimates, not receiving a prescription, depending on area. Conclusions Although prescription rates for ADHD medication have increased over time, the data do not indicate excessive use of medication. Instead, they suggest that for some groups there is a lower use of medication compared with expected prevalence figures, especially among adults.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 Prevalence of neurodevelopmental differences and autism in Scottish primary schools 2018–2022(John Wiley & Sons, Inc., 2023-11-27) Maciver, Donald; Rutherford, Marion; Johnston, Lorna; Roy, Anusua SinghThis study investigated the prevalence of neurodevelopmental needs among children in primary schools in Scotland. Two groups were identified: autistic learners and a larger group of learners who had neurodevelopmental differences. These differences encompassed any need for additional support in various domains, including communication, interaction, emotional regulation, coordination, movement, and cognition. A two‐phase process was employed, drawing on data from a cross‐sectional study followed by a secondary analysis of a population census. In the first phase, a random sample of 688 children with additional support needs from 22 schools participated. Demographics, support characteristics, and neurodevelopmental needs were identified. Results revealed that 76.89% of children with additional support needs exhibited a need type consistent with a neurodevelopmental difference. In the second phase, data from the Scottish Government Annual Pupil Census, covering all state‐provided primary school children between 2018 and 2022, were analyzed. Modeling was conducted using data from the first phase to estimate prevalence of neurodevelopmental differences. Data on autism were directly extracted from the census. Analysis revealed an increase in the prevalence of neurodevelopmental differences and autism. The prevalence of autism rose by 31.98%, with 2.60% of primary school children identified as autistic in 2022. Similarly, the prevalence of neurodevelopmental differences increased by 10.57%, with 16.22% of primary school children exhibiting such differences in 2022. Across 32 localities, regional variations in prevalence were observed. These findings show the substantial number of neurodivergent children within Scottish primary schools and emphasize the need for a neurodevelopmentally informed approach to inclusive education.
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