Waiting and the unknown: parental experiences accessing autism spectrum disorder diagnostic services for their children

Autism spectrum disorder (ASD) is a range of neurodevelopmental disorders identified by persistent deficits in social interactions and communication, as well as restricted or repetitive patterns of behaviors.1 While there is increased prevalence of the condition worldwide,2 diagnosis remains an issue for many families. Because its etiology is multifactorial, with no single cause identified, there is no biological or genetic test that can diagnose ASD.3 Rather, diagnosis relies on accessing specially trained physicians and psychologists who administer ASD-specific behavioral evaluations. Early identification of ASD is a priority because the best chance for improving symptoms is through early and intensive intervention.4,5 A definitive ASD diagnosis is also often a prerequisite for children to access publicly funded services. Yet, obtaining a diagnosis itself can be stressful, frustrating, and time-consuming for many families. ASD is usually detected in early childhood and can, in many cases, be reliably diagnosed by the age of 18 months.6 Many countries report lengthy delays in obtaining a diagnosis, even when early signs of the condition are identified.7–9 Given the multiple potential negative impacts on children and their families, it is critical to better understand the barriers and facilitators parents and guardians face in accessing ASD diagnostic services for their children. Our review in this issue of JBI Evidence Synthesis examines the barriers and facilitators in accessing ASD diagnostic services.10 We specifically searched for qualitative studies that would provide an in-depth understanding about parents’ and guardians’ experiences in accessing ASD diagnostic services for their children. After screening, our review includes 36 studies conducted in 13 countries: Australia, Canada, China, Iran, Ireland, Jordan, Kazakhstan, Nigeria, Palestine, Saudi Arabia, Sweden, United Kingdom, and United States. From 55 findings extracted from the original research articles, we identified 3 synthesized findings. The first finding was that parents’ and guardians’ ability to access ASD diagnostic services was affected by the attitude of the health care providers (HCPs) they encounter. Although parents and guardians identified signs and symptoms of ASD in their children, their concerns may be dismissed by HCPs. As the condition presents in children who are quite young, providers may recommend a wait-and-see approach, which can lengthen the time to diagnosis. HCPs who actively listened and addressed parents’ and guardians’ concerns provide a sense of support and relief when concerns were acted upon. The second synthesized finding was that extended waiting times and associated financial burdens resulted in frustration and inequalities. Most parents and guardians faced cumbersome bureaucratic processes along their journey to an ASD diagnosis. The process of getting a definitive diagnosis could range anywhere from a few months to several years from the time when concerns were first identified. Parents and guardians often experienced a lack of available ASD diagnostic services in their own communities. They regularly attempted to get an expedited diagnosis through private providers, which resulted in service and financial inequities in access. Although some countries provide universal insurance coverage, parents and guardians who can afford it often pay out-of-pocket to avoid long waiting times for needed services for their children. The third synthesized finding highlighted that HCPs’ lack of knowledge about ASD contributed to parents’ and guardians’ confusion, and led to inaccurate or conflicting diagnoses, particularly related to ASD comorbidities. Because of a lack of familiarity with ASD, HCPs often gave vague, confusing, and contradictory advice during a period when parents were first learning about the condition. This qualitative synthesis provides evidence that multiple barriers exist for parents and guardians accessing ASD diagnostic services for their children. Findings indicate that parents and guardians need quicker and easier access to ASD assessment and diagnostic services. HCPs who work with parents and guardians of children with autism need the requisite knowledge and skills for assessment and diagnosis. Healthcare professionals need to be aware of contextual and systemic disparities that may arise as parents and guardians seek ASD diagnostic services for their children. This systematic review underscores the need for future research conducted worldwide, including focusing on low- and middle-income countries to understand barriers and facilitators in accessing ASD diagnostic services for children in those contexts. Future research and better training are also recommended to understand the needs of HCPs working with parents and guardians of children with autism. All this work is needed to better and more equitably support this growing population and their families.

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