Why are they waiting? Exploring professional perspectives and developing solutions to delayed diagnosis of autism spectrum disorder in adults and children

Abstract

Background: This paper reports on the development of child and adult Action Plans for Autism Spectrum Disorder to address the problem of delayed diagnosis and lengthy waiting times. Evidence used in the development of action plans was gathered from a sequential mixed methods study to further understand the reasons for the long waiting time and potential solutions. This is the first published investigation, from the perspective of diagnosing professional teams, of the reasons for delays, which also generates solutions.Methods: Ninety five clinicians from 8 child and 8 adult services attended 16 focus groups to explore clinicians' views on a) reducing the wait for diagnosis and b) providing a good quality diagnostic process with good adherence to clinical guidelines. During focus groups, quantitative data were fed back, used to frame discussions and facilitate solution focused action planning with each service.Sixteen local action plans were synthesised to create an ASD Action Plan for children and an ASD Action Plan for adults.Results: Key solutions are proposed to support the reduction of the wait for diagnostic assessment, through reducing non-attendance rates, reducing inappropriate referrals, developing efficient working and communication and improving the effectiveness of care pathways. These are presented in actions plans for use by clinical teams. Conclusion:The first step in addressing the clinical challenge of increased wait for diagnostic assessment of ASD is understanding the complex and multi-factorial reasons for delays. The action plans developed here through systematic enquiry and synthesis may provide clinical diagnostic teams with evidence based guidance on common challenges and solutions to guide future quality improvement programmes. Future research to evaluate whether using Action Plans leads to a reduction in waiting times would be of value.Key words: Focus groups; Autism spectrum disorder; diagnostic assessment; wait times 3 Highlights  This study develops our understanding of the reasons for delay in assessment and diagnosis of autism spectrum disorders, based on triangulation of clinical data from quantitative analysis and qualitative data from a large focus group sample. The study offers translation of research evidence into practical application in the form of action plans for ASD services. The paper presents an Action Plan for child diagnostic teams to improve efficiency and quality of the diagnostic assessment process. The paper presents an Action Plan for adult diagnostic teams to improve efficiency and quality of the diagnostic assessment process.4

Autism Diagnosis in the United Kingdom: Perspectives of Autistic Adults, Parents and Professionals

“…Indeed, to ensure the quality of the diagnostic process, expertise from several perspectives needs to be integrated: that of the individual, their family, and the professionals (De Clercq and Peeters 2007 ). A goal for professionals is to reduce the (often lengthy) waiting times for an autism diagnosis, whilst also providing a high-quality diagnostic service that adheres to best-practice clinical guidelines (Rutherford et al 2016 ). A recent survey of 116 professionals in the UK (largely paediatricians, psychologists, and speech and language therapists) highlighted several challenges that made it difficult to provide a timely and appropriate autism diagnosis (Rogers et al 2016 ).…”

Improving Efficiency and Quality of the Children’s ASD Diagnostic Pathway: Lessons Learned from Practice

“…Given the well documented challenge in translating research evidence into practice in healthcare, there is a need for clinical research partnerships to develop and evaluate solutions to this problem. Recent clinical research provides evidence based guidance to enable service providers to identify the focus for targeted intervention to address the challenge of reducing the wait for ASD assessment (Rutherford et al submitted (a), 2016b ) and we were interested in whether a clinical children’s service could apply this evidence to improve efficiency and reduce the duration of assessment, whilst maintaining a high quality service.…”

Development and Initial Utility of the Autism Clinical Interview for Adults: A New Adult Autism Diagnostic Measure

“…[1][2][3] The semistructured format can serve as an important guide for diagnostic accuracy in specialist settings, as well as in mainstream services where skills in autism assessment may be limited, and where case recognition, autism diagnosis, and identification of cooccurring conditions may be particularly difficult. 8,11,13 The study findings are an important first step in evaluating a new semistructured interview that may well be useful for clinical assessment services for adults suspected of being on the autism spectrum, clinician training, and research.…”

“…[7][8][9] Diagnostic tools also need to be structured and sufficiently detailed to be accurate and efficient for use in specialist and nonspecialist assessment settings and brief enough given service and resource constraints. 8,[10][11][12][13] The Family History Interview (FHI) was designed to quantify the broader autism phenotype (traits related to the autism spectrum). 14,15 The FHI characterizes social communication and repetitive behaviors to calculate a standardized score of subthreshold, autism spectrum traits.…”