Why are they waiting? Exploring professional perspectives and developing solutions to delayed diagnosis of autism spectrum disorder in adults and children. (November 2016)

• Record Type: Journal Article
• Authors: Rutherford, Marion; McKenzie, Karen; Forsyth, Kirsty; McCartney, Deborah; O'Hare, Anne; McClure, Iain; Irvine, Linda
• Is Part Of: Research in autism spectrum disorders. Volume 31(2016:Nov.)
• Page Start: 53
• Page End: 65
• Publication Date: 2016-11
• Subjects: Focus groups -- Autism spectrum disorder -- Diagnostic assessment -- Wait times; Autism spectrum disorders -- Periodicals; 616.85882005
• DOI: 10.1016/j.rasd.2016.06.004
• Languages: English
• ISSNs: 1750-9467

Abstract

Highlights: This mixed method study enhances knowledge of the reasons professionals give for delay in diagnostic assessment of autism spectrum disorders. The study translates research evidence into practical application through 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. 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.