"I Don't Do Much Without Researching Things Myself": A Mixed Methods Study Exploring the Role of Parent Health Literacy in Autism Services Use for Young Children

J Autism Dev Disord. 2022 Aug;52(8):3598-3611. doi: 10.1007/s10803-021-05240-0. Epub 2021 Aug 25.


Little is known about how parent health literacy contributes to health-related outcomes for children with autism. This mixed-methods study included 82 U.S. parents of a child with autism 2-5 years-old and sought to describe (1) health literacy dimensions, (2) how health literacy influences services use, and (3) health literacy improvement strategies. Results showed: autism information was accessed from multiple sources; understanding autism information involved "doing your own research"; autism information empowered decision-making; health literacy facilitated behavioral services use; health literacy influenced medication use; family and system characteristics also affected services use; autism education remains needed; services information is needed across the diagnostic odyssey; and greater scientific information accessibility would increase uptake. Findings demonstrate how parent health literacy affects services use.

Keywords: Autism; Children; Decision-making; Health literacy; Mixed methods; Parents; Services use; United States.

MeSH terms

  • Autism Spectrum Disorder*
  • Autistic Disorder* / diagnosis
  • Autistic Disorder* / therapy
  • Child
  • Child, Preschool
  • Educational Status
  • Health Literacy*
  • Humans
  • Parents / education