Improving the diagnosis of autism spectrum disorder

Abstract

Delays in the diagnosis of autism spectrum disorder (ASD) in children and young people are all too common and cause real anguish for those affected and their families. This article assesses the scale of the problem and discusses possible reasons and solutions.

Realist evaluation of Autism ServiCe Delivery (RE-ASCeD): which diagnostic pathways work best, for whom and in what context? Findings from a rapid realist review

“… 6 31–34 Managing parental expectations 35 and developing a co-operative relationship appeared to help manage this balance but ‘was perceived to be particularly problematic because access to services is based on diagnosis, rather than an assessment of the child and family’s needs’ 35 (p215). From parents’ perspective, one autism charity website suggested they ‘develop a talent for making a polite nuisance of themselves (more properly known as ‘advocacy’)’ to traverse barriers to referral 34 (p29),…”

“…Integrating the pathways into a single assessment process potentially saved time and cost less 13 18 21 but we found little evidence of how to address macro-level constraints such as chronic underinvestment. 34 Much appeared to rest on personal relationships at the micro-level 61 and/or parents co-ordinating services. 35 While joint working was endorsed 62 suggestions to promote it were limited to establishing clear pathways 63 ; creating opportunities to work in different teams, such as split posts or secondments 59 ; and an Additional Learning Needs Coordinator (a teacher at the school).…”

“…6 31-34 Managing parental expectations 35 and developing a co-operative relationship appeared to help manage this balance but 'was perceived to be particularly problematic because access to services is based on diagnosis, rather than an assessment of the child and family's needs' 35 (p215). From parents' perspective, one autism charity website suggested they 'develop a talent for making a polite nuisance of themselves (more properly known as 'advocacy')' to traverse barriers to referral 34 (p29), Additionally, greater autism awareness and training for frontline professionals, particularly general practitioners and teachers, alongside training in how, when and who to refer to 6 12 32 34 36-38 was suggested as a strategy to improve early identification.…”

“You’ve actually got two patients, you haven’t got one”: parent-informed criteria for evaluating the autism assessment process

“…For example, concerns around support and resources support findings by Crane et al (2016) that parents who received more information about autism, how it affected their child and where they could go for help experienced greater satisfaction with services. Previous research has identified barriers related to this theme, such as inconsistent staffing (Sulek et al , 2017), underfunding for services and inadequate policy frameworks (Dowden, 2018), which may explain why this theme continues to emerge. NHS England’s most recent policy framework on autism assessment pathways (NHS England, 2023) refers to a “demand-capacity gap” acknowledging that providing adequate support is not always possible: access to information could mitigate this to some extent.…”

Parent-Mediated Interventions for Infants under 24 Months at Risk for Autism Spectrum Disorder: A Systematic Review of Randomized Controlled Trials

“…Some studies have reported beneficial effects for parents, such as increased parenting skills and reduction of maternal depression, which subsequently impact the development of the affected child and their siblings (Lai et al, 2014 ; McConachie & Diggle, 2007 ). Aside from that, mobilizing parents in implementing interventions at home can help overcome the challenges in accessing community services (Dowden, 2018 ; Sacrey et al, 2015 ).…”