The Diagnostic Odyssey of Autism Spectrum Disorder

Abstract

OBJECTIVES Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by challenges in social communication and interaction and restricted or repetitive behavior, interests, or activities. Although ASD symptoms generally manifest in early childhood, many individuals experience delays accessing an autism diagnosis and related services. In this study, we identify the individual, social, and structural factors that influence parents’ experiences of children’s ASD diagnosis. METHODS Parents of 25 children with autism participated in 60- to 90-minute semistructured in-person interviews. Interviews were recorded and transcribed verbatim. Transcripts were analyzed using the method of grounded theory. This inductive method allowed analysts to identify key themes related to participants’ experiences of children’s ASD diagnosis. RESULTS The process of ASD diagnosis reflects an odyssey that includes 3 key phases: the prediagnosis phase, in which “Making Sense of Child Difference” is a primary characteristic of participants’ experiences; the during-diagnosis phase, when “Navigating Diagnosis” suggests systematic barriers that influence the timing of ASD diagnosis; and the postdiagnosis phase, when participants’ experiences of “Connecting to Services” point to the important role that personal efforts play in gaining access to care. CONCLUSIONS In this study, we highlight individual, social, and structural factors that influence parent experiences before, during, and after their child’s autism diagnosis. Our findings indicate the need for more consistent and continuous support for autistic individuals and their families during the diagnostic odyssey, as well as resources that better represent the diversity of experiences and symptoms associated with autism across the life course.

The Route to Autism Spectrum Diagnosis in Pediatric Practice in Bulgaria

“…Early diagnosis of ASD provides an opportunity for timely and adequate therapy, and increases the chances of a more successful school education and socialization [ 8 , 9 ]. Factors that may speed up or delay diagnosis are numerous [ 10 ] and with great variability country by country, but the basic are maternal education level [ 11 ], socio-economic status (doubted as a direct factor) [ 12 ], national and regional screening and evaluation policy and tools, qualification of the personnel, funding, social awareness, stigma, etc., [ 1 , 13 ].…”

Adaptation and validation of the Genetic Counseling Outcome Scale for autism spectrum disorders and related conditions

“…This diagnostic care pathway requires a detailed developmental history from parents, teachers, and/or other caregivers, evaluation of the core symptoms of ASD, a thorough appraisal of abilities, and biological testing to rule out or monitor co‐morbidities, all of which are crucial not only for a diagnosis, but also to tailor medical and behavioral provisions the child will receive in clinic, in early intervention programs and/or in schools (Anagnostou et al, 2014; Johnson & Myers, 2007). This time‐intensive care pathway is experienced as a ‘diagnostic odyssey’ to individuals with ASD and their families due to uncoordinated and delayed access to the needed multiple specialties and settings (Lappé et al, 2018). This not only leaves individuals and families distressed, confused, and frustrated, but hinders immediate access to further care (Lappé et al, 2018) potentially exacerbating the autistic person’s developmental trajectory (Elsabbagh, 2020).…”

“…This time‐intensive care pathway is experienced as a ‘diagnostic odyssey’ to individuals with ASD and their families due to uncoordinated and delayed access to the needed multiple specialties and settings (Lappé et al, 2018). This not only leaves individuals and families distressed, confused, and frustrated, but hinders immediate access to further care (Lappé et al, 2018) potentially exacerbating the autistic person’s developmental trajectory (Elsabbagh, 2020).…”

Improving Access to Developmental Evaluations Through Novel Models of Care: A Pilot Study

“…2 While this system aims to improve early identification of developmental delays, barriers to obtaining a diagnostic assessment and services remain. These barriers include challenges in identifying early signs of disabilities, 3,4 delays in referral, 5 long wait for subspecialty evaluation, 6 and difficulty in accessing care, 7 which together result in diagnosis and service access at older ages.…”