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.
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).
MEDLINE, CINAHL, PsycINFO, and Cochrane Database of Systematic Reviews.
English language; published 2011-2022; primary studies describing prevalence of psychiatric conditions in autistic adults; or systematic reviews evaluating interventions for autistic adults.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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:
= 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
= 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 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.
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.
The intervention led to a statistically significant improvement in parent-reported quality of life (t28 = 3.09,
= 0.005) and parent-reported perception of autism-specific difficulties (t28 = 2.99,
= 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.
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.
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.
A repeated measures single subject design was used to examine the effectiveness of a joint play approach embedded in professional practice, in supporting pretend play for autistic children. Seven ...autistic children, aged 5–8 years, with a placement within a specialist educational provision, and who demonstrated restricted play, participated in weekly sessions using the Playboxes approach over a period of 3 months. Pre- and post-approach pretend play abilities were assessed using the Symbolic Play Test and the Test of Pretend Play. Every child gained increased age-equivalent scores on the Test of Pretend Play, ranging from + 8 to + 30 months. Pretend Play abilities can support developmental outcomes and incorporation of this approach into regular practice could be of value for autistic children.
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.
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