Coming to Understand the Child Has Autism: A Process Illustrating Parents' Evolving Readiness for Engaging in Care

SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: [email protected]; Web site: http://sagepub.com

Y

14

Autism; Pervasive Developmental Disorders; Parents; Motivation; Child Rearing; Mothers; Readiness; Ability; Parent Participation; Knowledge Level; Parent Attitudes; Help Seeking; Foreign Countries; Rural Areas; Urban Areas; Coping; Emotional Response; Symptoms (Individual Disorders); Disability Identification

10.1177/1362361319874647

1362-3613

We report results from a large qualitative study regarding the process of parents "coming to understand the child has autism" starting from the time of initial developmental concerns. Specifically, we present findings relevant to understanding how parents become motivated and prepared for engaging in care at this early stage. The study included primary data from 45 intensive interviews with 32 mothers and 9 expert professionals from urban and rural regions of Ontario, Canada. Grounded theory methods were used to guide data collection and analysis. Parents' readiness (motivation and capacity) for engagement develops progressively at different rates as they follow individual paths of meaning making. Four optional steps account for their varied trajectories: "forming an image of difference," "starting to question the signs," "knowing something is wrong," and "being convinced it's autism." Both the nature of the information and professional help parents seek, and the urgency with which they seek them, evolve in predictable ways depending on how far they have progressed in understanding their child has autism. Results indicate the need for sensitivity to parents' varying awareness and readiness for involvement when engaging with them in early care, tailoring parent support interventions, and otherwise planning family-centered care pathways.

As Provided

2020

EJ1241263