BackgroundResearch suggests that diagnostic procedures for Autism Spectrum Disorder are not consistent across practice and that diagnostic rates can be affected by contextual and social drivers. The purpose of this review was to consider how the content of clinical practice guidelines shapes diagnoses of Autism Spectrum Disorder in the UK; and investigate where, within those guidelines, social factors and influences are considered.MethodsWe electronically searched multiple databases (NICE Evidence Base; TRIP; Social Policy and Practice; US National Guidelines Clearinghouse; HMIC; The Cochrane Library; Embase; Global health; Ovid; PsychARTICLES; PsychINFO) and relevant web sources (government, professional and regional NHS websites) for clinical practice guidelines. We extracted details of key diagnostic elements such as assessment process and diagnostic tools. A qualitative narrative analysis was conducted to identify social factors and influences.ResultsTwenty-one documents were found and analysed. Guidelines varied in recommendations for use of diagnostic tools and assessment procedures. Although multidisciplinary assessment was identified as the ‘ideal’ assessment, some guidelines suggested in practice one experienced healthcare professional was sufficient. Social factors in operational, interactional and contextual areas added complexity to guidelines but there were few concrete recommendations as to how these factors should be operationalized for best diagnostic outcomes.ConclusionAlthough individual guidelines appeared to present a coherent and systematic assessment process, they varied enough in their recommendations to make the choices available to healthcare professionals particularly complex and confusing. We recommend a more explicit acknowledgement of social factors in clinical practice guidelines with advice about how they should be managed and operationalised to enable more consistency of practice and transparency for those coming for diagnosis.Electronic supplementary materialThe online version of this article (10.1186/s12888-018-1800-1) contains supplementary material, which is available to authorized users.

Evidence suggests disclosing an autism diagnosis is associated with reduced stigmatization for autistic adults. However, it is unknown whether this is true for autistic adolescents. We used a vignette-and-questionnaire design to study stigmatizing attitudes with adolescents (aged 11–12 and 14–16 years, total N = 250) in a UK school. We investigated the effect of disclosing that a fictional adolescent had an autism diagnosis on stigmatizing attitudes of peers by testing the effect of disclosure of diagnosis on the social and emotional distance pupils wanted to maintain from the autistic adolescent. We also tested the effect of disclosure on peers’ assessment of the adolescent’s responsibility for their own behaviour. We checked to see if the effects were moderated by gender and age-group. Disclosing autism did not affect the social and emotional distance peers wanted to maintain from the autistic adolescent, but was associated with significant reduction in personal responsibility attributed to the adolescent’s behaviour. Boys attributed more personal responsibility to the autistic adolescent than girls, but this gender effect was reduced when autism was disclosed. These findings suggest that disclosing autism to other pupils may be of limited use in reducing stigmatization by peers in UK schools.

Diagnosis of autism in the UK is generally made within a multidisciplinary team setting and is primarily based on observation and clinical interview. We examined how clinicians diagnose autism in practice by observing post-assessment meetings in specialist autism teams. Eighteen meetings across four teams based in the south of England and covering 88 cases were audio-recorded, transcribed and analysed using thematic analysis. We drew out two themes, related to the way in which clinicians expressed their specialist disciplinary knowledge to come to diagnostic consensus: Feeling Autism in the Encounter; and Evaluating Testimonies of Nonpresent Actors. We show how clinicians produce objective accounts through their situated practices and perform diagnosis as an act of interpretation, affect and evaluation to meet the institutional demands of the diagnostic setting. Our study contributes to our understanding of how diagnosis is accomplished in practice.

The diagnosis of autism can be challenging, particularly if an individual coming for assessment is considered to be near the diagnostic threshold. It is important to understand the experiences and challenges of diagnosis from the perspective of clinicians. In this study, 21 in-depth interviews were conducted with clinicians working in specialist autism assessment teams in adult and children’s services in England. Interviews were recorded and transcripts were analysed thematically. We identified four themes that represented how clinicians were frequently engaged with juggling their own professional understanding of what autism is with other factors such as the results of standardised tests and the views of patients and carers, in the context of limited resources: institutional pressure, making diagnosis make sense, seeing through an autism lens and just tools. The study illuminates the diagnostic process as a socially situated activity. We suggest that an examination of the benefits and drawbacks of assessment services specialising in autism only, the resources they require to operate effectively, and how they operate in the context of wider health services would be appropriate and timely. Lay abstract When a child or adult is referred for an autism diagnosis, clinicians from different backgrounds work together to make a diagnostic decision. A few studies have asked clinicians in interview how they feel about diagnosis and what the challenges are. We interviewed clinicians in child and adult assessment services in England, and from different professional backgrounds, about the challenges of autism diagnosis and the factors that might influence the assessment process. We found that there were a number of challenges in autism diagnosis, especially when someone coming for diagnosis was considered to be near the diagnostic threshold. Clinicians told us that making a diagnosis was like creating a ‘narrative’: looking at many different factors that told a story about a person, rather than just looking at the results of diagnostic tests. Clinicians do not always agree with the results of those tests and have to use their specialist clinical judgement to make decisions. Clinicians were concerned about the amount of time people have to wait for an autism assessment, and the resulting pressure on the assessment process. The findings of this work can help us to understand how diagnosis happens and consider ways in which it can be improved for adults, children and families coming for assessment, as well as clinicians.

We aimed to explore the levels of agreement about the diagnoses of Autistic Spectrum Conditions between the referrer, CAMHS practitioner and a research diagnosis, as well as the stability of the practitioner’s diagnosis over time in a secondary analysis of data from 302 children attending two Child and Adolescent Mental Health Services over two years. Kappa coefficient was used to assess the agreement between the referrer and research diagnosis. Kendall’s tau b coefficient was used to assess the agreement between the practitioner and the research diagnosis assigned using the Development and Well-Being Assessment, as well as the agreement between the referrer’s indication of presenting problems and the practitioner diagnosis. Diagnostic stability was explored in children with and without a research diagnosis of Autistic Spectrum Condition. There was a moderate level of agreement between the referrer and research diagnosis (Kappa = 0.51) and between practitioner’s and research diagnosis (Kendall’s tau = 0.60) at baseline, which reduced over the subsequent two years. Agreement between the referrer and practitioner’s diagnosis at baseline was fair (Kendall’s tau = 0.36).The greatest diagnostic instability occurred among children who practitioners considered to have possible Autistic Spectrum Conditions but who did not meet research diagnostic criteria. Further studies could explore the approaches used by practitioners to reach diagnoses and the impact these may have on diagnostic stability in Autistic Spectrum Conditions. Standardised assessment using a clinically rated diagnostic framework has a potential role as an adjunct to standard clinical care and might be particularly useful where practitioners are uncertain.