The Diagnostic Odyssey of Autism Spectrum Disorder.
Pediatrics. 2018 Apr;141(Suppl 4):S272-S279
Authors: Lappé M, Lau L, Dudovitz RN, Nelson BB, Karp EA, Kuo AA
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.
PMID: 29610407 [PubMed – in process]