Assistant Professor Boston Children's Hospital Boston, Massachusetts, United States
Background: It is vital for children diagnosed with Autism Spectrum Disorder (ASD) to receive prompt and intensive services to achieve the best outcomes. However, accessing and coordinating services can be challenging. Objective: We aimed to implement an Autism Care Navigator (ACN) intervention within the primary care setting. Baseline data from caregiver surveys were analyzed to determine challenges that could be targeted by the ACN. Design/Methods: Children with a recent diagnosis of ASD or entering a key transition period were referred to the ACN by their PCP between 9/21-9/23. The ACN provided educational resources, helped families access services such as ABA and Early Intervention, and connect with community supports. Families were surveyed prior to meeting with the ACN to determine their baseline knowledge, stress/strain, self-efficacy/agency and service levels. Surveys were conducted in English and Spanish. Results: 121 caregivers completed the baseline survey. Most caregivers surveyed were mothers (97%), and the mean age of their children was 44 months. 48% of the caregivers were single parents. 30% of children were Black, non-Hispanic, 63% were Hispanic, and 65% were male. 81% of families had public insurance and 80% spoke primarily English. At baseline, 10% of children were receiving ABA therapy and 50% were receiving another type of therapy such as speech or OT. 42% of caregivers who had tried to obtain therapy for their child said it was usually/always easy to obtain, and 35% of caregivers who had sought behavioral support reported it was usually/always easy. 92% of children under age 3 were enrolled in EI and 56% of children over 3 had IEPs through the public school system. The mean knowledge score was 72%. In the self-efficacy and maternal agency surveys, caregivers felt least confident about their knowledge about ASD and ability to seek community support. On the stress and strain surveys, caregivers felt the most stress related to their child’s future. In multivariate linear regression analysis adjusted for child race/ethnicity, caregiver education and insurance type, greater knowledge about ASD was associated with higher parental stress (11.43 [95% CI:2.42-20.45]).
Conclusion(s): Baseline survey results reflect a need to help families connect with therapy as well as community support. Interestingly, although caregivers expressed a lack of confidence in their knowledge about ASD, higher levels of knowledge were associated with higher stress. These findings suggest the need to further explore the relationship between knowledge and stress to best support families after this diagnosis.
