Autism Speaks Early Access to Care Community Screening Event: Description and Preliminary Outcomes

Background: Autism Speaks Early Access to Care program seeks to reduce the average age of diagnosis and increase access to high-quality early intervention for all children on the autism spectrum. According to the CDC, the average age of diagnosis is 4-5 years, despite the ability to make a reliable autism diagnosis at 2 years. Studies have also documented that racial and ethnic minority populations and those of lower socioeconomic status are diagnosed later and less often. The earlier children are identified, the earlier they are able to receive early intervention services.  Recent studies have attributed these disparities to differences in language, culture and awareness at both the family and provider levels.  To address these challenges, Autism Speaks developed a free, community-based developmental screening program for underserved communities.  The program includes partnerships with local expert clinicians, resources and community organizations.

Objectives: To describe the model and preliminary outcomes of Autism Speaks community screening event, delivered to an underserved community in Los Angeles on September 7^th.

Methods: Families called in advance to schedule an appointment with expert clinicians.  Walk-ins were taken as availability allowed. All families completed a developmental history form, the Parents’ Evaluation of Developmental Status and the Communication and Symbolic Behavior Scales-Infant Toddler Checklist, Modified-Checklist for Autism in Toddlers, or the Social Communication Questionnaire, depending on the child’s age.  All families chose whether to complete the screening in English or Spanish. Clinicians met with the families for approximately 1 hour to provide feedback on developmental screening results, answer questions, and recommend follow-up services.  Families then had the opportunity to visit a resource fair. Satisfaction was assessed using a five point scale, with 1 being very unsatisfied and 5 being very satisfied. Follow-up calls are being conducted by 2-1-1 LA (www.211LA.org) to ensure families successfully connect to local service providers.

Results: Seventy one children from 66 families were seen by a total of 24 clinicians. 83% of families spoke only Spanish and the average educational attainment was high school graduate.  The average age of children seen was 5 years (range: 9 months – 13 years). 63% of children failed an autism-specific or social communication screener, and all parents indicated concerns on the PEDS. Among families completing the satisfaction scale (86%), mean scores ranged from 4.6 to 4.8 for the registration process, event day and appointment with clinicians. Mean overall satisfaction score for the event was 4.5 (SD=1.19).

Conclusions: Community-based screening events are successful at reaching underserved populations and can help lower the average age of an autism diagnosis. Parents found the event helpful and were highly satisfied with the services received.  Follow-up data is also being collected on connection to services providers.