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

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.

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.

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.

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.

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

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.

Neurodevelopmental disorders and neurodiversity: definition of terms from Scotland's National Autism Implementation Team.

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.

An interdisciplinary nationwide complex intervention for lifespan neurodevelopmental service development: Underpinning principles and realist programme theory.

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.

Development of a Pathway for Multidisciplinary Neurodevelopmental Assessment and Diagnosis in Children and Young People.

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.

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

Visual 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 article reports results of a scoping literature review, alongside qualitative evaluation with parents and professionals. We report findings from 34 studies, identifying four 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) Accessibility, (2) Participation-focussed (3) Individualisation, (4) Teaching Methods, (5) Consistency, and (6) Information and Training. We propose consensus with terminology and implications for practice and research.

Participation of children with disabilities in school: A realist systematic review of psychosocial and environmental factors.

BACKGROUND: In order to make informed decisions about how best to support children and young people with disabilities, effective strategies that facilitate active and meaningful participation in school are required. Clinical factors, diagnosis or impairments somewhat helpful in determining what should be provided in interventions. However, clinical factors alone will not offer a clear view of how to support participation. It is helpful then to look at wider psychosocial and environmental factors. The aim of this review was to synthesise evidence of psychosocial and environmental factors associated with school participation of 4-12 year old children with disabilities to inform the development of participation-fostering interventions. METHODS: A systematic search and synthesis using realist methods was conducted of published research. Papers had to include consideration of psychosocial and/or environment factors for school participation of children with disabilities. The review was completed in accordance with the Realist and Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) and Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines. Papers were identified via Boolean search of the electronic databases MEDLINE, CINAHL, PhycINFO and ERIC (January 2006-October 2018). Appraisal focussed on contributions in terms of whether the articles are appropriate for the review (relevance) and research quality (rigour). Data were analyzed using content and thematic analysis methods using a realist framework. A narrative synthesis of results was reported. RESULTS AND IMPLICATIONS: We identified 1828 papers in the initial search. Seventy two papers were included in the final synthesis. Synthesis of findings led to three overarching mechanisms representing psychosocial factors for children (1) identity (2) competence and (3) experience of mind and body. Environmental aspects (context) compromised five interrelated areas: (1) structures and organization, (2) peers, (3) adults, (4) space and (5) objects. Our synthesis provides insights on how professionals may organize efforts to improve children's participation. Consideration of these findings will help to proactively deal with suboptimal participation outcomes. Development of theoretically determined assessments and interventions for management of school participation are now required.

Implementation of a Practice Development Model to Reduce the Wait for Autism Spectrum Diagnosis in Adults.

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.

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.

Gender ratio in a clinical population sample, age of diagnosis and duration of assessment in children and adults with autism spectrum disorder.

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.

The relationship between waiting times and 'adherence' to the Scottish Intercollegiate Guidelines Network 98 guideline in autism spectrum disorder diagnostic services in Scotland.

The aim of this study was to explore the extent to which the Scottish Intercollegiate Guidelines Network 98 guidelines on the assessment and diagnosis of autism spectrum disorder were adhered to in child autism spectrum disorder diagnostic services in Scotland and whether there was a significant relationship between routine practice which more closely reflected these recommendations (increased adherence) and increased waiting times. Retrospective, cross-sectional case note analysis was applied to data from 80 case notes. Adherence ranged from a possible 0 (no adherence) to 19 (full adherence). Overall, 17/22 of the recommendations were adhered to in over 50 of the 80 cases and in 70 or more cases for 11/22 of the recommendations, with a mean adherence score of 16 (standard deviation = 1.9). No significant correlation was found between adherence and total wait time for untransformed (r = 0.15, p = 0.32) or transformed data (r = 0.12, p = 0.20). The results indicated that the assessment and diagnostic practices were consistent with the relevant Scottish Intercollegiate Guidelines Network 98 guideline recommendations. Increased adherence to the 19 included recommendations was not significantly related to increased total waiting times, indicating that the Scottish Intercollegiate Guidelines Network 98 recommendations have generally been integrated into practice, without a resultant increase in patient waits.

Factors influencing waiting times for diagnosis of Autism Spectrum Disorder in children and adults.

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.

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.

Prosody and its relationship to language in school-aged children with high-functioning autism.

BACKGROUND: Disordered expressive prosody is a widely reported characteristic of individuals with autism. Despite this, it has received little attention in the literature and the few studies that have addressed it have not described its relationship to other aspects of communication. AIMS: To determine the nature and relationship of expressive and receptive language, phonology, pragmatics, and non-verbal ability in school-aged children with high-functioning autism and to determine how prosody relates to these abilities and which aspects of prosody are most affected. METHODS & PROCEDURES: A total of 31 children with high-functioning autism and 72 typically developing children matched for verbal mental age completed a battery of speech, language, and non-verbal assessments and a procedure for assessing receptive and expressive prosody. OUTCOMES & RESULTS: Language skills varied, but the majority of children with high-functioning autism had deficits in at least one aspect of language with expressive language most severely impaired. All of the children with high-functioning autism had difficulty with at least one aspect of prosody and prosodic ability correlated highly with expressive and receptive language. The children with high-functioning autism showed significantly poorer prosodic skills than the control group, even after adjusting for verbal mental age. CONCLUSIONS: Investigating prosody and its relationship to language in autism is clinically important because expressive prosodic disorders add an additional social and communication barrier for these children and problems are often life-long even when other areas of language improve. Furthermore, a receptive prosodic impairment may have implications not only for understanding the many functions of prosody but also for general language comprehension.

Receptive and expressive prosodic ability in children with high-functioning autism.

PURPOSE: This study aimed to identify the nature and extent of receptive and expressive prosodic deficits in children with high-functioning autism (HFA). METHOD: Thirty-one children with HFA, 72 typically developing controls matched on verbal mental age, and 33 adults with normal speech completed the prosody assessment procedure, Profiling Elements of Prosodic Systems in Children. RESULTS: Children with HFA performed significantly less well than controls on 11 of 12 prosody tasks (p < .005). Receptive prosodic skills showed a strong correlation (p < .01) with verbal mental age in both groups, and to a lesser extent with expressive prosodic skills. Receptive prosodic scores also correlated with expressive prosody scores, particularly in grammatical prosodic functions. Prosodic development in the HFA group appeared to be delayed in many aspects of prosody and deviant in some. Adults showed near-ceiling scores in all tasks. CONCLUSIONS: The study demonstrates that receptive and expressive prosodic skills are closely associated in HFA. Receptive prosodic skills would be an appropriate focus for clinical intervention, and further investigation of prosody and the relationship between prosody and social skills is warranted.