Experiences of the Autism Spectrum Disorder Diagnostic Process from the Perspective of Individuals, Families and Practitioners: A Systematic Review

Background: In recent years, an increasing number of individuals have been diagnosed as being on the autism spectrum. The diagnosis of autism spectrum disorder (ASD), along with the diagnostic process, can significantly affect these individuals and their families. However, there is not a consistent understanding of the experiences of these individuals and their families within the existing literature.

Objectives: This systematic review evaluated the extent and quality of the existing published literature regarding diagnostic experiences of individuals on the autism spectrum, their families and their practitioners.

Methods: The systematic review was conducted according to the PRISMA statement (Preferred Reporting Items for Systematic reviews and Meta-Analyses). A systematic database search was conducted of the academic literature describing the experiences of individuals on the autism spectrum and/or their families or practitioners during the ASD diagnostic process. The search was limited to journal articles and postgraduate theses published in English during the past decade. Search terms (title, abstract and key word) were establish synonyms for the three concepts of ASD, diagnosis and experience. CINAHL, Cochran Library, Embase, Medline, Proquest, PsychInfo, PubMed, Science Direct, Scopus and Web of Science were searched, resulting in a total of 11,940 documents (5,110 once duplicates were removed). This resulted in 54 articles for inclusion once the abstract and/or full text were reviewed for relevance. A data extraction form was used to summarise the articles, and a thematic data analysis approach was utilised to identify themes. Quality was evaluated by using the ‘Kmet forms’ for quantitative and qualitative studies or the AMSTAR form for systematic reviews.

Results: Three inter-related themes emerged from the literature: approach, support and process. In relation to approach, a strengths-focused and individual/family centered approach was advocated, where it was recommended the individual’s and family’s strengths, interests and goals be explored. This was perceived to promote optimism and hope, whilst keeping in perspective that ASD is a significant and lifelong disability. In terms of support, the provision of informational and emotional support during the ASD diagnostic process were appreciated. Providing a comfortable and private environment for sessions, using an empathetic communication style and making referrals for support groups was suggested to address this issue. This was identified as one of the most challenging aspect of diagnosing ASD by the practitioners. Finally, a coordinated, efficient and comprehensive process through-out the diagnostic process was considered important, where accurate and clear information is provided to the family.

Conclusions: The perspective of individuals, families and practitioners illustrated that an ASD diagnosis is often associated with a wide range of positive and negative emotions. The experiences of these key stakeholders suggested that it would be beneficial for an ASD diagnostic process to involve a strengths-focused and individual/family centered approach, provision of informational and emotional support, and a coordinated, efficient and comprehensive process.