Family Experience of Navigating Systems of Care for Young Persons with Autism

Background: Families provide the majority of care for young persons with autism, yet there is little research investigating the shifting needs of, hence potentially changing services required for, young persons with autism as they transition from childhood to adolescence and young adulthood. Current literature focuses on child-directed treatment of specific behaviors rather than family-focused treatment and adaptive behaviors, which is surprising because family-centered care is considered best practice in child health care. The pervasive impact of autism on individual and family functioning and the cumulative societal costs associated with autism argue for concerted efforts aimed at improving systems of care to enhance outcomes.

Objectives: This study investigated the processes by which families experience and navigate systems of care for young persons with autism over time and across health, education and social service sectors.

Methods: This data represents the qualitative component of a larger, mixed-methods study. In-depth, semi-structured interviews were conducted with 20 families with a child, adolescent or young adult with autism. Purposive sampling ensured diversity in age of the child (from 3 to 29 years old), urban/rural location, symptom severity, and family demographics. Interview transcripts were content analyzed, assisted by NVivo software. Established grounded theory constant comparison analysis methods were used to yield a data generated theoretical model demonstrating component elements and processes depicting family outcomes over time and development.

Results: Several themes were common to the parents’ experiences regardless of the age or developmental level of the young person with autism. Pervasive themes included: (1) the mother’s life revolved around child’s care needs, including navigation of supports and services; (2) the need for consistent, reliable respite care; (3) a high staff turnover for education and social sectors, blamed on inadequate wages; (4) a worry about their child’s future; (5) the importance of informal supports, including extended family and friends, for parental well-being; (6) the importance of service providers that treated parents with respect, and worked in collaboration with parents; (7) inadequate educational and recreational/leisure programs, and; (8) a focus on social services offered in the home and community, because parents felt that was where they had the most input and control, and could tailor services to match their values. Parents provided several suggestions on ways that systems of care could be most improved. Pervasive themes included: (1) improved consistency of professionals; (2) qualified and consistent respite care; (3) improved integration and coordination of services within and across sectors; (4) increased funding and availability of formal supports and services for adolescents and young adults; and (5) adequate housing, vocational and leisure opportunities for older adolescents and young adults with autism.

Conclusions: This study identified critical strengths and limitations of current systems of care over time, as well as suggestions for how to best improve supports and services grounded in the experiences of families of young persons with autism. This information can be used to improve systems of care across service sectors for young persons with autism and their families.