“Managing the Wait”: Parents’ Experiences in Accessing Diagnostic and Treatment Services for Children and Adolescents Diagnosed With Autism Spectrum Disorder

Abstract

Background: Parents of children and adolescents diagnosed with autism spectrum disorder (ASD) report delays in accessing timely diagnostic and treatment services for their children. Research has generally focused on parents’ experiences in caring for a child diagnosed with ASD. This study describes the process of how parents access ASD services for their children and adolescents. Method: This study used a qualitative research design that was informed by grounded theory methodology. We used constant comparative analysis to develop a process model and a core concept. Results: Seventeen parents of children and adolescents diagnosed with ASD were interviewed. Our process model included 3 main phases: Watchful waiting (noticing suspected behaviors, and searching for assessment and diagnosis); Informed waiting (receiving the diagnosis, facing challenges in accessing treatment services, and realizing the impact of an ASD diagnosis); and Contemplative waiting (pondering the future, reflecting on the past, and making recommendations). “Managing the Wait” was identified as the core category central to parents’ experience of this process. This process was found to be impacted by socioeconomic status, parents’ skills and capacity to advocate on their child’s behalf, and severity of their child’s ASD. Conclusions: Our findings illustrate the many barriers families face during their journey in accessing ASD services. Our results illustrate the need to address wait times for services, and provide education and support services for parents as a means of improving their self-advocacy skills, especially for parents of children and adolescents with severe disability.

Implementing standard screening for autism spectrum disorder in CHD

“…This would reduce the stress and hassles families experience associated with multiple appointments and delays in diagnosis. 47,48 For providers working with children with CHD who are not affiliated with a nearby Cardiac Neurodevelopmental Program, autism screening measures are readily available for use in the medical clinic, and community referrals to an autism specialist can be made for the family.…”

Parent Experiences of Autism Spectrum Disorder Diagnosis: a Scoping Review

“…Studies also recorded parent-reported number of professionals consulted in order to obtain a diagnosis with an average of three to five professionals seen (Eggleston et al 2019;Goin-Kochel et al 2006;Hofer et al 2019;Howlin and Asgharian 1999;Mahapatra et al 2019;Siklos and Kerns 2007;Wong et al 2017). The perceived barriers to timely ASD diagnosis by parents were studied in many articles and the most often reported include (1) false reassurance or dismissal of concerns by health care practitioners (Barnard-Brak et al 2017;Boshoff et al 2019;Brookman-Frazee et al 2012;Chamak and Bonniau 2013;Chamak et al 2011;Dababnah and Bulson 2015;de Verdier et al 2019;Elder et al 2016;Ferguson and Vigil 2019;Henderson 2017;Hidalgo et al 2015;Legg and Tickle 2019;Lopez et al 2018;Lovelace et al 2018;Navot et al 2017;Oswald et al 2017;Pearson et al 2020;Ribeiro et al 2017;Sansosti et al 2012;Schelly et al 2019;Smith-Young et al 2020;Stahmer et al 2019;Sudhinaraset and Kuo 2013;Upoma et al 2020;Wong et al 2017), ( 2) lack of expertise in ASD diagnosis among consulted health care practitioners (An et al 2020;Brookman-Frazee et al 2012;Cr...…”

“…, (4) misdiagnosis or need for further referral extending wait times(Brookman-Frazee et al 2012;Lloyd et al 2019;Martinez et al 2018;Rabbitte et al 2017;Smith-Young et al 2020;Stahmer et al 2019;Upoma et al 2020), (5) parental denial(Chao et al 2018;Clasquin-Johnson and Clasquin-Johnson 2018;Crane et al 2018;Dababnah et al 2018;Hidalgo et al 2015;Pearson and Meadan 2018;Sakai et al 2019), (6) waitlist times for assessment(Lappe et al 2018;Legg and Tickle 2019;Raymond-…”

Effects of a parent training using telehealth: Equity and access to early intervention for rural families

“…Early diagnosis has led to an increased demand for developmental and behavioral early intervention. The supply of services has not kept up with this demand, forcing families to wait for these intervention services (Hyman et al, 2020;Smith-Young, Chafe, & Audas, 2020).…”