Caregiver concerns for autistic children differ between publicly funded educational and mental health settings: Findings from a community implementation-effectiveness trial

This study sought to characterize caregiver concerns for autistic children receiving care in two public service systems—schools and mental health programs—and to identify child and family characteristics associated with these concerns. Caregivers of 353 school-age autistic children in mental health services ( n  = 192) or schools ( n  = 161) named, in their own words, the top three concerns for their child. A modified version of Weisz et al.’s Top Problem coding system was developed to expand beyond the original codes, capturing child emotional and behavioral problems, autism features, and adaptive behaviors. Most caregivers (61.8%) identified externalizing behaviors like aggression, as well as social differences (36.3%) and attention difficulties (35.4%) as top problems. Caregivers also mentioned autism-specific concerns related to social responsiveness (54.7%). Participant characteristics, including child age and caregiver race/ethnicity, were associated with concerns. Controlling for child age and caregiver ethnicity, concerns differed by setting; caregivers in mental health (vs. school) settings named more externalizing behaviors, while those in school settings named more restricted repetitive behaviors and social differences. Findings highlight the need to implement setting-specific interventions individualized to caregivers’ priorities and to ensure opportunities for cross-system coordination. Lay abstract This study explored what concerns caregivers have about their autistic children when receiving care from either mental health programs or schools. Caregivers shared, in their own words, the top three concerns they worry about most for their child. Caregivers had many different concerns, including worries about their child’s emotions and behaviors, autism-related traits, daily living skills, and ability to manage feelings and behavior. The study also found that caregivers’ concerns were linked to family characteristics like their child’s age, the caregiver’s race or ethnicity, and how many children live in the home. Caregivers’ concerns also differed based on where they were getting help. Caregivers in mental health programs were more likely to worry about challenging behaviors like aggression. Caregivers in school settings were more likely to be concerned about their child’s social skills and repetitive behaviors. These findings help us better understand what caregivers worry about when seeking support for their child. The findings also show why it is important to use the right strategies in each setting to meet the specific needs of caregivers and their children.