Browsing by Person "Johnston, Lorna"

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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.
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.
Development, psychometrics and feasibility of the School Participation Questionnaire: A teacher measure of participation related constructs
(Elsevier, 2020-09-19) Maciver, Donald; Tyagi, Vaibhav; Kramer, Jessica; Richmond, Janet; Todorova, Liliya; Romero-Ayuso, Dulce; Nakamura-Thomas, Hiromi; van Hartingsveldt, Margo; Johnston, Lorna; O'Hare, Anne; Forsyth, Kirsty
Background We report development of the SPQ (School Participation Questionnaire) a teacher-completed measure of participation related constructs for schools. The SPQ was developed to support participation-related assessment, interventions, and research in the inclusive school context.
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.
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.
Neurodevelopmental disorders and neurodiversity: Definition of terms from Scotland's National Autism Implementation Team [Editorial]
(2022-03-28) Shah, Premal J.; Boilson, Marie; Rutherford, Marion; Prior, Susan; Johnston, Lorna; Maciver, Donald; Forsyth, Kirsty
Adults with neurodevelopmental disorders frequently present to, but fit uneasily into, adult mental health services. We offer definitions of important terms related to neurodevelopmental disorders through unifying research data, medical and other viewpoints. This may improve understanding, clinical practice and development of neurodevelopmental disorder pathways within adult mental health services.
Participation‐related constructs and participation of children with additional support needs in schools
(Wiley, 2022-09-25) Maciver, Donald; Roy, Anusua Singh; Johnston, Lorna; Tyagi, Vaibhav; Arakelyan, Stella; Kramer, Jessica M.; Richmond, Janet; Romero‐Ayuso, Dulce; Nakamura‐Thomas, Hiromi; Todorova, Liliya; van Hartingsveldt, Margo; Forsyth, Kirsty
Maciver, D., Roy, A.S., Johnston, L., Tyagi, V., Arakelyan, S., Kramer, J.M., Richmond, J., Romero‐Ayuso, D., Nakamura‐Thomas, H., SPQ Study Group, Todorova, L., van Hartingsveldt, M. and Forsyth, K. (2022) ‘Participation‐related constructs and participation of children with additional support needs in schools’, Developmental Medicine & Child Neurology, p. dmcn.15390. Available at: https://doi.org/10.1111/dmcn.15390. To investigate associations between participation-related constructs and participation frequency and involvement in inclusive schools. In this cross-sectional study, teachers of children with additional support needs, including intellectual disability, autism, and learning difficulties, completed measures. Participation-related constructs were measured using the School Participation Questionnaire; participation frequency and involvement were measured using the Participation and Environment Measure for Children and Youth. A series of multilevel linear mixed-effects regression models with maximum likelihood estimates and bootstrap confidence intervals with p-values were obtained. Final models included participation-related constructs and participation, controlling for demographic and diagnostic confounders (including age, sex, language, level of school support, and autism). Six hundred and eighty-eight children (448 [65.1%] males; mean age 8 years 7 months [range 4 years 10 months-12 years 13 months, standard deviation 2 years 1 months]) were assessed by 252 teachers. Across a series of models, participation-related constructs were consistently associated with more intensive participation (competence, environment, identity p < 0.001; symptoms p = 0.007), independent of confounders. More frequent participation remained associated with three of four participation-related constructs (competence, identity p < 0.001; environment p = 0.021). Age (p = 0.046), language (p = 0.002), and level of school support (p = 0.039) also remained significantly associated with frequency of participation. Children with additional support needs in inclusive schools may have several participation barriers. Policies and interventions to improve participation are needed. [Abstract copyright: © 2022 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.]
Piloting a Home Visual Support Intervention with Families of Autistic Children and Children with Related Needs Aged 0–12
(MDPI, 2023-03-01) Rutherford, Marion; Baxter, Julie; Johnston, Lorna; Tyagi, Vaibhav; Maciver, Donald
Visual supports are an important intervention for autistic individuals and others with neurodevelopmental differences. However, families often report limited access to visual supports and lack of information and confidence in their use at home. This pilot study aimed to evaluate the feasibility and effectiveness of a home-based visual supports intervention. Methods: 29 families with children (n = 20 males; mean age 6.59 years [Range 3.64–12.21 years SD 2.57]) receiving support for autism or related needs participated in the study. Parents engaged in an individualised assessment and intervention process through home visits, completing pre- and post-measures. Qualitative methods were used to explore the parents’ experiences of the intervention. Results: The intervention led to a statistically significant improvement in parent-reported quality of life (t28 = 3.09, p = 0.005) and parent-reported perception of autism-specific difficulties (t28 = 2.99, p = 0.006). Parents also reported improved access to resources and relevant information and increased confidence in using visual supports at home. The home visit model was strongly supported by the parents. Conclusion: The results provide initial evidence of the acceptability, practicality, and utility of the home-based visual supports intervention. These findings suggest that outreach into the family home may be a beneficial mechanism for delivering interventions related to visual supports. This study highlights the potential of home-based interventions to improve access to resources and information for families and the importance of visual supports in the home setting.
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 Singh
This 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.
Psychometric properties of the School Participation Questionnaire: Testing a measure of participation-related constructs
(Wiley, 2022-01-31) Maciver, Donald; Tyagi, Vaibhav; Johnston, Lorna; Kramer, Jessica M.; Richmond, Janet; Todorova, Liliya; Romero-Ayuso, Dulce; Nakamura-Thomas, Hiromi; Van Hartingsveldt, Margo; O’Hare, Anne; Forsyth, Kirsty
AIM To explore concurrent validity, convergent validity, interrater reliability, test–retest reliability, and Rasch model analysis of the School Participation Questionnaire (SPQ), a tool for teachers to assess personal and environmental determinants of school participation.
Pupils’ views on visual timetables and labels in mainstream primary classrooms
(Bild, 2020-10-01) Rutherford, Marion; Lahood-Kullberg, Brittany; Baxter, Julie; Johnston, Lorna; Cebula, Katie
The use of visual timetables and other visual supports such as labelling materials, places and people with words, symbols and/or photos has been advocated by many to enhance communication and understanding, particularly for children with special educational needs. These are used by staff in mainstream and special settings, and parents and carers also often develop these for use at home. A number of studies have been conducted to explore the value of these from the perspective of the adults who implement them but few studies have sought to obtain the children’s views. In this paper, the authors who work at Queen Margaret University, (MR); within the NHS Lothian Speech and Language Therapy Department (MR); within the Additional Support for Learning Service (JB & LJ) in Edinburgh; and at the University of Edinburgh (BLK & KC) report on a study they conducted to gain the views of 109 pupils with (36) and without additional support needs (73) attending two mainstream primary schools. They conclude that most pupils in both groups found these useful but that they could be more involved in deciding how these were implemented and updated.
Rethinking Autism Assessment, Diagnosis, and Intervention Within a Neurodevelopmental Pathway Framework
(IntechOpen, 2022-11-28) Rutherford, Marion; Johnston, Lorna; Carotenuto, Marco
The neurodiversity paradigm is reshaping how we understand, use language, interpret and undertake research, and support autistic people and those with related neurodevelopmental differences across the lifespan. Multi-disciplinary teams are seeking new ways to operationalise deficit focussed diagnostic criteria, to reflect the preferences of autistic people and the wider neurodiversity movement. In this chapter, we explore what the neurodiversity paradigm could mean in practice and how to reconcile the position that autism is a difference not a deficit and therefore individuals do not need to be “fixed” or “cured,” with the continued importance of timely diagnosis and the very real impact on participation, engagement, and wellbeing of autistic individuals and their families, within the environments of home, education, community, employment, and care. We present work underway to move from “single condition” pathways to neurodevelopmental pathways and new approaches which consider co-occurring conditions in a single process, involve autistic people as partners and value differences.
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, Marion
Using stakeholder involvement, expert knowledge and naturalistic implementation to co-design a complex intervention to support children’s inclusion and participation in schools: The CIRCLE framework
(MDPI, 2021-03-11) Maciver, Donald; Hunter, Cathleen; Johnston, Lorna; Forsyth, Kirsty
Whist inclusion is recommended for most children most of the time it remains difficult to implement. In this paper, we present the process undertaken to review and redesign a pre-existing complex intervention (The CIRCLE Framework) which was designed to enhance teachers confidence and competence in provision of universal first level supports for 5-12 year old children with additional support needs. The approach presented draws on the Medical Research Council guidance for the development of complex interventions. A series of ten co-design workshops with 70 stakeholders was completed, applying interactive and participatory methods. Analysing outputs of each workshop revealed recurring design ideas that became the main aspects of the new framework and associated manuals. Intervention content, theoretical frameworks, manuals to support use in practice and implementation strategies were developed. On completion, the updated intervention was extended up to 18 years of age and redistributed to all teachers in the participating local authority. We present the main conclusions and interpretations around the design and naturalistic implementation of the framework, and reflections on use in practice, including a detailed list of recommendations for implementation across schools and staff.