A Window into the Use of Post-diagnostic Services for Autism and Parents' Perspective on the Quality of Early Childhood Services Trajectory in a Canadian Province.

This study looked at what parents thought about autism services after their child's diagnosis in Quebec, Canada. About 75% of families got some temporary services like speech therapy, which they felt okay about but found inconsistent. Even though all diagnosed children should get early behavioral intervention, 25% of families didn't receive it. Parents who did get this service were happy with it. The best part of all services was having good relationships with service providers.

This study examined parents' perspectives on post-diagnostic autism services in Quebec, Canada, using responses from 91 parents who completed the ETAP evaluation framework. The research focused on the quality of early childhood services following autism diagnosis. Key findings revealed that approximately three-quarters of families received interim services (such as speech therapy) with neutral-to-positive ratings, though these services were viewed as having low validity and continuity. Despite entitlement to early behavioral intervention (EBI) through the public system, about 25% of families did not receive this service.

Families who did receive EBI rated it positively across all quality dimensions, with parent-provider relationships (empathy) being the highest-rated aspect for both service types.

Results highlight significant gaps in service delivery, with 25% of entitled families not receiving early behavioral intervention. The importance of parent-provider relationships suggests training should emphasize empathy and communication skills. Systems need improvement in service continuity and validity to better support families during the critical post-diagnostic period.

The study was conducted in a single Canadian province (Quebec), limiting generalizability to other healthcare systems. Sample size details and recruitment methodology are not specified in the abstract, making it difficult to assess representativeness and potential selection bias.

The pathway for post-diagnostic services for autism tends to be complex, heterogeneous, and fraught with delays. This situation has repercussions for families' experience with care systems, the quality of early interventions, and family adjustment. To date, studies of parents' point of view on autism services have predominantly focused on the diagnostic phase of the services trajectory. The goal of the present study was to investigate the perspective of parents on autism early childhood services within a public healthcare and social services system in a Canadian province (Québec).

Participants were 91 parents who completed a structured framework for the evaluation of the quality of services trajectories, the Evaluation of the services Trajectory in Autism by Parents (ETAP; Mello et al., in Research in Developmental Disabilities 133, 2023). Approximately three-quarters of families received interim services (e.g., punctual speech therapy interventions) for which they had overall neutral-to-positive appraisals but viewed as having comparably low validity and continuity. Although all children diagnosed with autism are entitled to receive early behavioral intervention (EBI) dispensed by the public health and social services system, approximately a quarter of families did not receive this service. Families who received EBI evaluated this service positively on all ETAP dimensions.

The empathy (i.e., parent-provider relationships) dimension was rated highest for both interim and EBI services. Some systemic, family, and child-related factors were associated with the perceived quality of services for both interim and early childhood services. Our results emphasize the need for services for children and families as soon as possible, both during assessment and after diagnosis.