A Phenomenological Exploration of Parents’ Psychological Experiences Obtaining a Diagnosis and Access to Services for Their Children with Autism Spectrum Disorder
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The three primary purposes of this study were to (1) acquire knowledge of parents’ psychological experiences obtaining a diagnosis and accessing services for their child with ASD by examining the actual situation, as lived through and experienced by the parents, (2) gain knowledge of the meaning of advocacy and empowerment from parents who are living these experiences, and (3) derive possible implications for enhancing services provided by mental health professionals, service providers, and policy-makers to parents of children with autism. I utilized a sequential transformative integrated design, drawing data in Wave II of a larger, on-going investigation examining child, family, and community variables associated with early identification and treatment of autism spectrum disorders in the Pacific Northwest. I conducted a descriptive exploratory analysis to describe all participants from Wave II with respect to measures of sociodemographic variables, parental satisfaction with services, family empowerment, and reported relationships among these variables. Next, I conducted in-depth semi-structured interviews with six participants identifying as low-income and/or ethnic minorities to explore their experiences throughout the process of obtaining a diagnosis and accessing services for their child with ASD. Interviews were recorded and transcribed. Data were analyzed using a phenomenological reduction and integrated with quantitative results. Constituent elements of the parent experiences included, but were not limited to: a desire and/or appreciation for sources of support and information regarding services; engaging in ongoing research and networking to learn about services; a need to be the expert on their child; and fear regarding availability of future services and child’s future after parents die. Constituent elements of empowerment and advocacy showed that these were conceptually and experientially related to one another, such that advocacy functioned as a behavioral manifestation of empowerment for parents in this study. Findings contribute to the literature on family experiences with the diagnostic and service utilization processes for ASD. Findings are discussed in regards to recommendations and implications for mental health professionals, service providers, and policy-makers working towards fostering more supportive and equitable diagnostic and service utilization pathways for these families.