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.

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.

Assessing the quality of care and service trajectories in autism from families' perspective: Early intervention and interim services.

BACKGROUND: Following the Evaluation of the Autism Trajectory for Parents - Diagnostic Services (ETAP-1), the ETAP-2 instrument was created to assess the quality of the post-diagnostic phase of the care and service trajectory of families of children with autism. The instrument, based on an integrated care perspective, was developed with the input of multiple stakeholders (parents, service providers, researchers). AIMS: This study sought to evaluate the factor structure, reliability, and convergent and discriminant validity of ETAP-2. METHODS AND PROCEDURES: Parents (N = 197) of children recently diagnosed with autism (M = 5.1 years) were recruited from an assessment center and organizations providing early behavioral intervention and other supports for autism in the province of Québec, Canada. They completed the ETAP-2 questionnaire along with measures of satisfaction and family quality of life. OUTCOMES AND RESULTS: The instrument presented a five-construct structure generally consistent with previously identified dimensions of quality, except for three items previously associated with the continuity of the service trajectory. ETAP-2 had excellent internal consistency and demonstrated convergent and discriminant validity with other measures. CONCLUSIONS AND IMPLICATIONS: ETAP-2 is a brief parent-report measure with good psychometric properties. It can assist in gathering information on families' perception and experiences with early intervention and other post-diagnostic, interim services.

Symptom Severity, Internalized and Externalized Behavioral and Emotional Problems: Links with Parenting Stress in Mothers of Children Recently Diagnosed with Autism.

The present study examined which aspects of the child's behavior and clinical profile accounted for three dimensions of parenting stress: related to parenting roles, to interactions with the child, and to the child. Measures of adaptive behavior, intellectual functioning, autism symptom severity, and challenging behavior and emotional difficulties were examined as predictors of parenting stress in 157 mothers of children recently diagnosed with autism. Children's emotional problems and aggressive behavior were most predictive of parenting distress, whereas autism symptoms along with emotional problems and aggressive behavior, respectively, were linked to stress pertaining to interactions and to the child. These findings underscore the need for comprehensive and complementary interventions that focus on children's behavior and symptoms but also on parent adjustment.