Early Support Program for Autism: Bridging the Gap Between Diagnosis and Treatment

Background: Autism Spectrum Disorder (ASD) is a lifelong condition that affects approximately 1 in 68 children and impacts many aspects of child and family life. The weeks after diagnosis can be particularly overwhelming, especially with the burden of navigating numerous treatment recommendations and diverse service systems. Many providers have lengthy waitlists, which can be frustrating for families who have been told that early intervention is critical for long lasting improvement.

Objectives: This presentation describes the Early Support Program for Autism (ESPA), an innovative community support program aimed at bridging the gap between diagnosis and treatment by providing supportive services at no cost to families after diagnosis.

Methods: ESPA is a collaboration between a large academic medical center and a local mental health agency. The primary components of the program include Clinical Care Coordination and Parent Education. The Clinical Care Coordination service is designed to help families navigate educational and healthcare systems, find relevant resources, and connect with community providers. Coordinators work with the family through an initial appointment and follow up contact as needed to provide guidance in accessing treatments and resources. The Parent Education service involves four sessions to introduce developmentally-based strategies to help parents to more effectively play and interact with their children. Sessions are offered in individual format either in-person or video conference.

Results:  A total of 1100 families have accessed the program over the past three years, hearing about ESPA from other families, service providers, online, parent support groups, and flyers posted in the community. The majority of program participants (89.5%) live in the San Francisco Bay Area where the program is located, although families from surrounding areas, other states, and other countries have also reached out for support. A majority of the children (66%) are between the ages of 18 months to 7 years and most parents call within a few weeks of ASD diagnosis. However, ages of participants have ranged from 5 months to 65 years and families have connected with the program at all stages in the diagnostic process. Our analysis found that most often families request information related to accessing 1) behavior, speech, and occupational therapy through insurance, 2) special education services through the public school system, and 3) regional center services. Families have also requested lists of providers, opportunities to participate in research, information about parent support groups, and opportunities for children to connect socially with peers. Anonymous surveys of parent satisfaction indicate services were rated as excellent (86% for clinical care coordination and 98% for parent education).

Conclusions: With lengthy waitlists for diagnosis and treatment, many families are frustrated by the delay in accessing early intervention services. ESPA provides an innovative delivery model for parents to receive critical support navigating service systems as well as education to strengthen the parent-child relationship. Further research on programs such as this one will provide important insights into how providers can minimize stress and foster empowerment in the period immediately following ASD diagnosis.