'We're responsible for the diagnosis and for finding help'. The help-seeking trajectories of families of children on the autism spectrum

Sociol Health Illn. 2021 Jan;43(1):40-57. doi: 10.1111/1467-9566.13184. Epub 2020 Sep 15.

Abstract

This article focuses on parents' process of seeking help for their child when a diagnosis of autism spectrum disorder is made or suspected. The study was conducted with 18 parents of children aged 4-10 years in Quebec (Canada). A trajectory-network approach was applied in order to carry out an in-depth analysis of family help-seeking trajectories based on the relationships mobilised (or neglected) over time and on life course events that may have precipitated (or hindered) help-seeking actions. Semi-directed interviews based on a name generator were conducted. A qualitative analysis of the content of family narratives was done and followed by the production of a schematic representation of each families' help-seeking trajectory. The results identified four constitutive phases during which relationships within the family, within associations, or with health and social services or education professionals helped or hindered the help-seeking process. The results show the relevance of the proposed approach for analysing the help-seeking process and better supporting families of children on the autism spectrum.

Keywords: family/kinship; help-seeking; narratives; social networks; social support; trajectory of care.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Autism Spectrum Disorder* / diagnosis
  • Autistic Disorder*
  • Canada
  • Child
  • Family
  • Humans
  • Parents
  • Qualitative Research