Rethinking Autism Assessment, Diagnosis, and Intervention Within a Neurodevelopmental Pathway Framework

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

Rethinking Autism Assessment, Diagnosis, and Intervention Within a Neurodevelopmental Pathway Framework

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.https://www.intechopen.com/online-first/84848pubpu

Pupils’ views on visual timetables and labels in mainstream primary classrooms

Marion Rutherford - ORCID 0000-0002-2283-6736 https://orcid.org/0000-0002-2283-6736The 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.https://www.ingentaconnect.com/contentone/bild/gap/2020/00000021/00000002/art0000321pubpub

Interdisciplinary capstone course: synthesising theory and practice through an innovative mental health clinical placement

Given that people with a mental illness have a range of biopsychosocial needs, care and treatment is complex and is best delivered by a multidisciplinary team. In order for future health professionals to learn skills to understand consumers from an individualised and holistic perspective, students from Nursing, Psychology, Exercise Physiology and Dietetics participated in a therapeutic Recovery Camp alongside 30 people with a mental illness. The camp aimed to envelope consumers and students within an experience of therapeutic recovery. This interdisciplinary capstone course was to achieve learning outcomes via immersion in various indoor and outdoor activities nested within a strengths-based five-day camp held in the Australian bush. Students from different disciplines learned from and educated each other. They applied skills learned in theory in what can only be described as an innovative practice setting. The setting formed a fundamental part of the therapeutic milieu and students learned that a \u27clinic\u27, \u27unit,\u27 or \u27formal setting\u27 isn\u27t the only way care and treatment can be delivered to this marginalised and vulnerable group. This paper showcases how students from various disciplines worked with and learned from people with a mental illness

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

Donald Maciver - ORCID: 0000-0002-6173-429X https://orcid.org/0000-0002-6173-429XReplaced AM with VoR 2021-03-16Whist 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.Funding: This work was supported by the City of Edinburgh Council.https://doi.org/10.3390/children80302178pubpub

Prevalence of neurodevelopmental differences and autism in Scottish primary schools 2018–2022

From Wiley via Jisc Publications RouterHistory: received 2023-06-30, accepted 2023-10-30, epub 2023-11-27Article version: VoRPublication status: PublishedFunder: The City of Edinburgh CouncilFunder: National Health Service LothianFunder: Scottish Government; doi: http://dx.doi.org/10.13039/100012095Donald Maciver - ORCID: 0000-0002-6173-429X https://orcid.org/0000-0002-6173-429XMarion Rutherford - ORCID: 0000-0002-2283-6736 https://orcid.org/0000-0002-2283-6736Anusua Singh Roy - ORCID: 0000-0002-5483-8832 https://orcid.org/0000-0002-5483-8832This 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.aheadofprintaheadofprin

Piloting a Home Visual Support Intervention with Families of Autistic Children and Children with Related Needs Aged 0–12

Marion Rutherford - ORCID: 0000-0002-2283-6736 https://orcid.org/0000-0002-2283-6736 Donald Maciver - ORCID: 0000-0002-6173-429X https://orcid.org/0000-0002-6173-429XVisual 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.https://doi.org/10.3390/ijerph2005440120pubpub

Visual supports at home and in the community for individuals with autism spectrum disorders: A scoping review

Marion Rutherford - ORCID 0000-0002-2283-6736 https://orcid.org/0000-0002-2283-6736Published in Association with The National Autistic SocietyVisual supports are recommended in autism spectrum disorder clinical guidelines. They can reduce anxiety, increase predictability, support communication and improve participation. They are implemented regularly in schools but evidence about home visual supports is limited. This paper reports results of a scoping literature review, alongside qualitative evaluation with parents and professionals. We report findings from 34 studies, identifying 4 categories of visual support and heterogeneity in participant characteristics, intervention methods, environments and outcome measures. Qualitative data from questionnaires (n=101) and focus groups generated key themes about home visual supports, through thematic analysis: 1) Access 2) Participation focussed 3) Individualisation 4) Teaching methods 5) Consistency 6) Information and Training. We propose consensus with terminology and implications for practice and research.https://doi.org/10.1177/136236131987175624pubpub

Diagnostic assessment of autism in adults – current considerations in neurodevelopmentally informed professional learning with reference to ADOS-2

Services for the assessment and diagnosis of autism in adults have been widely criticized and there is an identified need for further research in this field. There is a call for diagnostic services to become more accessible, person-centered, neurodiversity affirming, and respectful. 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 or preferences of 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 worked alongside ADOS-2 training providers to support clinicians in Scotland, to provide effective and respectful diagnostic assessment. 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 assessment practice. The National Autism Implementation Team also provided examples of actions which can be undertaken by clinicians to improve the assessment experience for those seeking a diagnosis. Training materials are based on research evidence, clinical experience, and the needs and wishes of autistic people

Burden of disease from inadequate water, sanitation and hygiene in low- and middle-income settings: a retrospective analysis of data from 145 countries

objective To estimate the burden of diarrhoeal diseases from exposure to inadequate water, sanitation and hand hygiene in low- and middle-income settings and provide an overview of the impact on other diseases. methods For estimating the impact of water, sanitation and hygiene on diarrhoea, we selected exposure levels with both sufficient global exposure data and a matching exposure-risk relationship. Global exposure data were estimated for the year 2012, and risk estimates were taken from the most recent systematic analyses. We estimated attributable deaths and disability-adjusted life years (DALYs) by country, age and sex for inadequate water, sanitation and hand hygiene separately, and as a cluster of risk factors. Uncertainty estimates were computed on the basis of uncertainty surrounding exposure estimates and relative risks. results In 2012, 502 000 diarrhoea deaths were estimated to be caused by inadequate drinking water and 280 000 deaths by inadequate sanitation. The most likely estimate of disease burden from inadequate hand hygiene amounts to 297 000 deaths. In total, 842 000 diarrhoea deaths are estimated to be caused by this cluster of risk factors, which amounts to 1.5% of the total disease burden and 58% of diarrhoeal diseases. In children under 5 years old, 361 000 deaths could be prevented, representing 5.5% of deaths in that age group. conclusions This estimate confirms the importance of improving water and sanitation in low- and middle-income settings for the prevention of diarrhoeal disease burden. It also underscores the need for better data on exposure and risk reductions that can be achieved with provision of reliable piped water, community sewage with treatment and hand hygiene