The diagnostic trajectory in autism and intellectual disability in Quebec: pathways and parents’ perspective

Abstract

Abstract Background This paper aimed to describe the diagnostic service trajectory of families of children with autism or intellectual disability in the province of Québec and identify predictors of parents’ perceptions of its quality. Methods The Evaluation of the services Trajectory in Autism by Parents instrument was completed by 259 parents at an assessment clinic. Children’s clinical records were also examined. Results On average 26 months elapsed between their first concerns and their child’s diagnosis, a period during which few (25%) received support. Parents’ evaluations were generally positive but were lower for the accessibility of the pre-assessment phase and the flexibility of the assessment process. Longer delays and a greater number of professionals consulted were associated with lower quality ratings. Some language-, immigration status-, and income-related differences in families’ appraisals were noted. Conclusion The diagnostic trajectory for neurodevelopmental disorders within public services in Québec presents some efficiency and accessibility challenges. Possible improvements are proposed to facilitate screening and to support families throughout this phase of their trajectory.

Keywords

• Assessment
• Autism
• Intellectual disabilities
• Services trajectory
• Quality
• parent’s perspective