Browsing by Person "Rutherford, Marion"

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A national study to investigate the clinical use of standardised instruments in autism spectrum disorder assessment of children and adults in Scotland
(Elsevier, 2016-07-07) Rutherford, Marion; McKenzie, Karen; McClure, Iain; Forsyth, Kirsty; O'Hare, Anne; McCartney, Deborah; Finlayson, Ian R.; Scottish Government
Background: There are few large scale studies about the nature and extent of the actual use of standardised assessments for Autism Spectrum Disorder diagnosis in clinical practice. This study compares and contrasts practice in diagnostic services for both adults and children. Method: We conducted an analysis of retrospective case notes from 150 cases (70 adult, 80 children) assessed for Autism Spectrum Disorder by 16 diagnostic services. Results: We found differences between adult and child services in staff training and use of standardised assessment during diagnosis. All child services had staff trained in and regularly using standardised assessments. Most adult services had staff trained in using instruments but only half used them regularly. Administration of standardised ASD assessments was ten times more likely in children than in adults (OR = 10.1; CI = 4.24, 24.0). Child services selected the ADOS as the standardised tool and Adult services selected the DISCO, with very little overlap. Decisions to administer standardised tools were not based on case complexity but rather the same process was applied to all referrals within a service. The three recommended components of assessment (clinical history, clinical observation and contextual information) were included for the majority of cases, although clinical observation was more frequently used with children than with adults. Conclusions: Based on the findings, we suggest a need for a wider range of appropriate assessments for use with adults, particularly those with an intellectual disability and for further research into the reasons behind the choices clinicians make during the assessment process. For child services in Scotland, there is a need for more training in use of current diagnostic interviews. Clinicians did not vary tools used based on complexity, suggesting that this is a notion still to be clearly defined and operationalised in clinical decision making about the use of standardised assessments.
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, Marie
Background 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.
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, Marion
This 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.
Articulation disorders in children with high functioning autism.
(2004) Gibbon, Fiona; McCann, Joanne; Peppe, Sue JE; O'Hare, Anne; Rutherford, Marion
Assessing prosodic and pragmatic ability in children with high-functioning autism
(2006) Peppé, Sue JE; McCann, Joanne; Gibbon, Fiona; O'Hare, Anne; Rutherford, Marion
Children with high-functioning autism are widely reported to show deficits in both prosodic and pragmatic ability. New procedures for assessing both of these are now available and have been used in a study of 31 children with high-functioning autism and 72 controls. Some of the findings from a review of the literature on prosodic skills in individuals with autism are presented, and it is shown how these skills are addressed in a new prosodic assessment procedure, PEPS-C. A case study of a child with high-functioning autism shows how his prosodic skills can be evaluated on the prosody assessment procedure, and how his skills compare with those of controls. He is also assessed for pragmatic ability. Results of both assessments are considered together to show how, in the case of this child, specific prosodic skill-levels can affect pragmatic ability.
Assessing prosodic and pragmatic ability in children with high-functioning autism.
(2006) Peppé, Sue JE; McCann, Joanne; Gibbon, Fiona; O'Hare, Anne; Rutherford, Marion
Children with high-functioning autism are widely reported to show deficits in both prosodic and pragmatic ability. New procedures for assessing both of these are now available and have been used in a study of 31 children with high-functioning autism and 72 controls. Some of the findings from a review of the literature on prosodic skills in individuals with autism are presented, and it is shown how these skills are addressed in a new prosodic assessment procedure, PEPS-C. A case study of a child with high-functioning autism shows how his prosodic skills can be evaluated on the prosody assessment procedure, and how his skills compare with those of controls. He is also assessed for pragmatic ability. Results of both assessments are considered together to show how, in the case of this child, specific prosodic skill-levels can affect pragmatic ability.
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, T
This 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.
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, T
This 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.
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, Izy
Background: 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.
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, Donald
There 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.
Development of a pathway for multidisciplinary neurodevelopmental assessment and diagnosis in children and young people
(MDPI, 2021-11-11) Rutherford, Marion; Maciver, Donald; Johnston, Lorna; Prior, Susan; Forsyth, Kirsty
There is a variable standard of access to quality neurodevelopmental assessment and diagnosis. People may have negative experiences, encountering lengthy waiting times, and inconsistent practices. Practitioners need guidance on standards and practices for assessment and diagnosis matched to new ways of working. In this paper, we present a new pathway and recommendations for multidisciplinary neurodevelopmental assessment and diagnosis for children and young people (<19 years), developed by the Scottish Government funded National Autism Implementation Team (NAIT). Our research used the Medical Research Council guidance for the development of complex interventions and included several iterative stages. Stage 1: n = 44 stakeholders attended an event on developing new practices for diagnosis and assessment. Stage 2: a literature synthesis was completed by the research team of clinical guidelines and diagnosis and assessment tools. Stage 3: an event with n = 127 stakeholders included discussion and debate of the data from stages 1 and 2. Recommendations and a draft pathway were written. Stage 4: successive drafts of recommendations and the pathway documentation were circulated among an advisory group, including multidisciplinary clinical experts and people with lived experience, until the final pathway was agreed upon. The finalised pathway includes guidance on terminology, assessment, diagnosis, triage, time standards and engagement of people with lived experience. The new pathway has been adopted by the Scottish Government. The pathway and associated documentation are freely available online for use by others.
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, Donald
Services 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.
Factors influencing waiting times for diagnosis of Autism Spectrum Disorder in children and adults
(Elsevier, 2015-08-26) McKenzie, Karen; Forsyth, Kirsty; O'Hare, Anne; McClure, Iain; Rutherford, Marion; Murray, Aja; Irvine, Linda
Aims: To identify the main factors predicting delays in diagnosis for Autism Spectrum Disorder (ASD) at three stages in the diagnostic process: wait for first appointment; assessment duration, and total wait for diagnosis. Method: Data were gathered from 150 case notes (80 child and 70 adult cases) from 16 diagnosing services across Scotland. Results: Having more information pre-assessment was associated with a reduced duration of the diagnostic process for children. This relationship was partially mediated by a reduction in the number of contacts required for diagnosis. In adults, having more factors associated with ASD (increased risk) reduced the wait time from referral to first appointment, but increased the overall duration of the diagnostic process. The latter relationship was partially mediated by an increase in the number of contacts required for diagnosis. Conclusion: Within children's services, increasing the amount of relevant information available pre-assessment is likely to reduce total duration of the assessment process by reducing number of contacts required. Having a high risk of ASD as an adult appears to result in being seen more quickly following referral, but also to increase the number of contacts needed and assessment duration. As a result, it increases and total duration overall. 2015 Elsevier Ltd.
Gender ratio in a clinical population sample, age of diagnosis and duration of assessment in children and adults with autism spectrum disorder
(SAGE Publishing, 2016-01-29) Rutherford, Marion; McKenzie, K.; Johnson, T.; Catchpole, C.; OHare, A.; McClure, I.; Forsyth, Kirsty; McCartney, Deborah; Murray, A.; Scottish Government
This article reports on gender ratio, age of diagnosis and the duration of assessment procedures in autism spectrum disorder diagnosis in a national study which included all types of clinical services for children and adults. Findings are reported from a retrospective case note analysis undertaken with a representative sample of 150 Scottish children and adults recently diagnosed with autism spectrum disorder. The study reports key findings that the gender ratio in this consecutively referred cohort is lower than anticipated in some age groups and reduces with increasing age. The gender ratio in children, together with the significant difference in the mean age of referral and diagnosis for girls compared to boys, adds evidence of delayed recognition of autism spectrum disorder in younger girls. There was no significant difference in duration of assessment for males and females suggesting that delays in diagnosis of females occur prior to referral for assessment. Implications for practice and research are considered.
Implementation of a practice development model to reduce the wait for Autism Spectrum diagnosis in adults
(SpringerNature, 2018-03-03) Rutherford, Marion; Forsyth, Kirsty; McKenzie, K.; McClure, Iain; Murray, A.; McCartney, Deborah; Irvine, Lindesay; O'Hare, Anne
This study examined waiting times for diagnostic assessment of Autism Spectrum Disorder in 11 adult services, prior to and following the implementation of a 12 month change program. Methods to support change are reported and a multi-level modelling approach determined the effect of the change program on overall wait times. Results were statistically significant (b = − 0.25, t(136) = − 2.88, p = 0.005). The average time individuals waited for diagnosis across all services reduced from 149.4 days prior to the change program and 119.5 days after it, with an average reduction of 29.9 days overall. This innovative intervention provides a promising framework for service improvement to reduce the wait for diagnostic assessment of ASD in adults across the range of spectrum presentations.
Improving Efficiency and Quality of the Children's ASD Diagnostic Pathway: Lessons Learned from Practice
(SpringerNature, 2017-11-30) Rutherford, Marion; Burns, Morag; Gray, Duncan; Bremner, Lynne; Clegg, Sarah; Russell, Lucy; Smith, Charlie; O'Hare, Anne
The 'autism diagnosis crisis' and long waiting times for assessment are as yet unresolved, leading to undue stress and limiting access to effective support. There is therefore a significant need for evidence to support practitioners in the development of efficient services, delivering acceptable waiting times and effectively meeting guideline standards. This study reports statistically significant reductions in waiting times for autism diagnostic assessment following a children's health service improvement programme. The average wait between referral and first appointment reduced from 14.2 to 10.4 weeks (t(21) = 4.3, p < 0.05) and between referral and diagnosis shared, reduced from 270 to 122.5 days, (t(20) = 5.5, p < 0.05). The proportion of girls identified increased from 5.6 to 2.7:1. Methods reported include: local improvement action planning; evidence based pathways; systematic clinical data gathering and a training plan. This is a highly significant finding for many health services wrestling with the challenges of demand and capacity for autism diagnosis and assessment.
Improving outcomes in autism spectrum disorder through effective service provision: diagnostic assessment pathways and parent focussed interventions [PhD by publication]
(Queen Margaret University, Edinburgh, 2020) Rutherford, Marion
Introduction: This thesis on the topic of autism spectrum disorder presents six publications focussed on research about improving outcomes through effective service provision, together with a critical appraisal, which adds depth and breadth to the reasoning and decision making involved in this work. The work follows an iterative process and is positioned from a pragmatist philosophical standpoint, using mixed methods to clarify shared language, concepts and meanings and to ensure translation of research findings into real world practice. The thesis provides evidence of the urgent need for research to inform services as to how they might address the issue of delays in ASD assessment and diagnosis, alongside better understanding of which interventions improve wellbeing outcomes. Aims: This portfolio of published research has arisen from three related research programmes, with the unifying objectives of: 1. Adding to clinical and research knowledge of current ASD service provision across the lifespan and how that might be improved through adherence to ASD clinical guidelines; 2. Reducing family stress associated with ASD by reducing delays in diagnosis through identification of factors which influence efficiency and quality in a diagnostic pathway, and; 3. Developing understanding of the effectiveness of parent focused interventions to inform future research and practice. The critical appraisal aims to: (a) Explore key areas for debate that have arisen in the work, which transcend the individual publications; (b) Position this debate within the context of international literature, research evidence and theory in relation to autism, implementation science and pragmatist epistemology underpinning the work; (c) Highlight the contribution of this research to the advancement of clinical practice and research knowledge, and the potential for further clinical reach and informing evidence based practice through diffusion of innovation. Methods: Research aims, methods and outcomes are presented within a series of publications, using mixed methods to seek to address these. Findings: Through this research, it was identified that the wait for diagnosis in child and adult services, from referral to diagnosis shared, exceeds the recommended 119 day time standard in 74% of child and 59% of adult services. There was a significant difference in mean age of referral and diagnosis for girls compared to boys and this delay occurred prior to referral through delayed recognition rather than through delays in the assessment process. Findings provide strong evidence of the need to address the way we collectively deliver ASD services. This research identified factors which influence waiting times in child and adult services. These included the availability of relevant pre-referral information at first appointment, consideration of the number of contacts or appointments used to reach a conclusion and complexity of the case. Mixed methods were used to further identify a broader range of factors affecting wait times in each service and to develop child and adult action plans as proposed solutions that could be applied by local service providers. Plans developed were then successfully applied in a 12 month service improvement intervention with 11 adult services, resulting in a statistically significant reduction in duration of assessment (b=-0.25, t(136) = -2.88, p=0.005), taking the duration to within the recommended timescale. In child services, this model also led to a statistically significant reduction in waiting times for diagnostic assessment and increased identification of girls with ASD. Systematic review and meta analysis of parent focused intervention for older children and adults found that a) parent training and education and b) mindfulness interventions provide measureable improvements in family wellbeing, which in turn are known to have a reciprocal effect on the individuals with ASD. A number of recommendations for future research arise from this work. These include the aspiration for an ASD specific wellbeing measure which can be applied with greater consistency across ASD intervention studies; and the need for consensus on theoretical models to underpin evaluation of complex interventions in ASD, which in turn may lead to deeper understanding of which elements of interventions are most effective in which circumstances. Conclusion: In a field where research evidence has been lacking, this body of work applies a range of research methods, in order to add to the evidence base and provide practical steps, which clinical service providers could apply, to reduce the delays in diagnosis. Earlier access to ASD specific interventions, as a result of earlier diagnosis, has the potential to improve wellbeing for individuals with ASD and their families. Despite limitations of the research on ASD parent focused interventions for older children and adults, findings reported here add further support to the ASD clinical guideline recommendations to use such interventions.
An interdisciplinary nationwide complex intervention for lifespan neurodevelopmental service development: Underpinning principles and realist programme theory
(Frontiers Media, 2023-01-30) Maciver, Donald; Rutherford, Marion; Johnston, Lorna; Curnow, Eleanor; Boilson, Marie; Murray, Mairéad
Background: People seeking support for neurodevelopmental differences often report waiting too long for assessment and diagnosis, as well as receiving inadequate support in educational and health settings. The National Autism Implementation Team (NAIT) developed a new national improvement programme in Scotland, focusing on assessment, diagnosis, educational inclusion, and professional learning. The NAIT programme was conducted within health and education services across the lifespan for a range of neurodevelopmental differences, including autism, developmental coordination disorder, developmental language disorder, and attention deficit hyperactivity disorder. NAIT included a multidisciplinary team, with the involvement of an expert stakeholder group, clinicians, teachers, and people with lived experience. This study explores how the NAIT programme was planned, delivered, and received over three years. Design: We performed a retrospective evaluation. We collected data from review of programme documents, consultation with programme leads and consultation with professional stakeholders. A theory-based analysis was completed, drawing on the Medical Research Council Framework for developing and evaluating complex interventions, and realist analysis methods. We developed a programme theory of the contexts (C), mechanisms (M), and outcomes (O) influencing the NAIT programme, based on comparison and synthesis of evidence. A key focus was on identifying the factors that contributed to the successful implementation of NAIT activities across different domains, including practitioner, institutional and macro levels. Results: On synthesis of the data, we identified the key principles underlying the NAIT programme, the activities and resources utilised by the NAIT team, 16 aspects of context, 13 mechanisms, and 17 outcome areas. Mechanisms and outcomes were grouped at practitioner level, service level and macro level. The programme theory is pertinent to observed practice changes across all stages of referral, diagnosis and support processes within health and education services for neurodivergent children and adults. Conclusions: This theory-informed evaluation has resulted in a clearer and more replicable programme theory that can be used by others with similar aims. This paper illustrates the value of NAIT, as well as realist and complex interventions methodologies as tools for policymakers, practitioners, and researchers.
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, Marion
Background: 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.
Mental health in autistic adults: a rapid review of prevalence of psychiatric disorders and umbrella review of the effectiveness of interventions within a neurodiversity informed perspective
(Public Library of Science, 2023-07-13) Curnow, Eleanor; Rutherford, Marion; Maciver, Donald; Johnston, Lorna; Prior, Susan; Boilson, Marie; Shah, Premal; Jenkins, Natalie; Meff, Tamsin
Background Autistic adults have high risk of mental ill-health and some available interventions have been associated with increased psychiatric diagnoses. Understanding prevalence of psychiatric diagnoses is important to inform the development of individualised treatment and support for autistic adults which have been identified as a research priority by the autistic community. Interventions require to be evaluated both in terms of effectiveness and regarding their acceptability to the autistic community. Objective This rapid review identified the prevalence of psychiatric disorders in autistic adults, then systematic reviews of interventions aimed at supporting autistic adults were examined. A rapid review of prevalence studies was completed concurrently with an umbrella review of interventions. Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines were followed, including protocol registration (PROSPERO#CRD42021283570). Data sources MEDLINE, CINAHL, PsycINFO, and Cochrane Database of Systematic Reviews. Study eligibility criteria English language; published 2011–2022; primary studies describing prevalence of psychiatric conditions in autistic adults; or systematic reviews evaluating interventions for autistic adults. Appraisal and synthesis Bias was assessed using the Prevalence Critical Appraisal Instrument and AMSTAR2. Prevalence was grouped according to psychiatric diagnosis. Interventions were grouped into pharmacological, employment, psychological or mixed therapies. Strength of evidence for interventions was assessed using GRADE (Grading of Recommendations, Assessment, Development and Evaluation). Autistic researchers within the team supported interpretation. Results Twenty prevalence studies were identified. Many included small sample sizes or failed to compare their sample group with the general population reducing validity. Prevalence of psychiatric diagnoses was variable with prevalence of any psychiatric diagnosis ranging from 15.4% to 79%. Heterogeneity was associated with age, diagnosis method, sampling methods, and country. Thirty-two systematic reviews of interventions were identified. Four reviews were high quality, four were moderate, five were low and nineteen critically low, indicating bias. Following synthesis, no intervention was rated as ‘evidence based.’ Acceptability of interventions to autistic adults and priorities of autistic adults were often not considered. Conclusions There is some understanding of the scope of mental ill-health in autism, but interventions are not tailored to the needs of autistic adults, not evidence based, and may focus on promoting neurotypical behaviours rather than the priorities of autistic people.