Improving outcomes in autism spectrum disorder through effective service provision: diagnostic assessment pathways and parent focussed interventions

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

How arsenic residues get in wool

Wool can become contaminated with arsenic in various ways, and several different sources may each contribute to any individual arsenic residue problem. • dipping sheep in an arsenical dip ( now illegal), • dipping sheep in a non-arsenical dip in a contaminated dipping facility • penning sheep on soil with high levels of arsenic before shearing. Other possible sources include running sheep on land contaminated by gold mine tailings or exploration sites, and allowing sheep access to sites on the farm where arsenical compounds have been dumped, for example, rubbish dumps or sites where dip/sump sludge has been dumped. Farmers can prevent wool arsenic levels above the Industry Standard by soil testing and sensible management of their dip and yards

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

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

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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

Phonetic and phonological errors in children with high functioning autism and Asperger syndrome

This study involved a qualitative analysis of speech errors in children with autism spectrum disorders (ASDs). Participants were 69 children aged 5-13 years; 30 had high functioning autism and 39 had Asperger syndrome. On a standardized test of articulation, the minority (12%) of participants presented with standard scores below the normal range, indicating a speech delay/disorder. Although all the other children had standard scores within the normal range, a sizeable proportion (33% of those with normal standard scores) presented with a small number of errors. Overall 41% of the group produced at least some speech errors. The speech of children with ASD was characterized by mainly developmental phonological processes (gliding, cluster reduction and final consonant deletion most frequently), but non-developmental error types (such as phoneme specific nasal emission and initial consonant deletion) were found both in children identified as performing below the normal range in the standardized speech test and in those who performed within the normal range. Non-developmental distortions occurred relatively frequently in the children with ASD and previous studies of adolescents and adults with ASDs shows similar errors, suggesting that they do not resolve over time. Whether or not speech disorders are related specifically to ASD, their presence adds an additional communication and social barrier and should be diagnosed and treated as early as possible in individual children

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

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

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