Voices of Marginalized Families in Early Intensive Autism Treatment

Melissa Mello 1, Melanie Shaw 2 * , Rebecca Wardlow 3

AM J QUALITATIVE RES, Volume 7, Issue 2, pp. 1-18

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This is a qualitative, phenomenological study of parents with children with autism who come from non-White backgrounds (N=7). Subjects were interviewed via recorded phone calls, during which they were asked a standard set of questions pertaining to their experiences with in-home family and child treatment. The problem examined in this study was the inequity experienced by families of color who have at least one child with autism and who received in-home early intervention autism services. Parents were interviewed to determine which aspects of treatment were perceived to be effective. The data were coded for emerging themes, with special attention given to opportunities for service amendment, seeking maximal perceived effectiveness. Families benefitted from an individualized approach to treatment that considered the family context, and culture, designed by listening to the family’s needs, concerns, and availability.   Assuming a one-size-fits-all approach, based on recommendations not made with diverse family backgrounds in mind, was less effective. Future directions in the field should include improved training for psychologists on cultural competence, encourage self-reflections on bias, and training on the development of individualized treatment plans.

Keywords: autism, disparities, early intervention, treatment.