Feasibility of Autism Screening in Underserved Populations

Background:  Research suggests that both racial and income disparities exist in the early detection and treatment of autism. Children's Specialized Hospital developed a program of education about the diagnosis and treatment of ASD among diverse populations for healthcare providers, parents, caregivers, educators, and other community members who have regular contact with underserved populations. Autism screening programs were also instituted within targeted underserved communities with the goal of identifying young children with previously undiagnosed autism spectrum disorders.

Objectives: We present findings of the analysis of the demographic data resulting from our efforts to increase identification of underserved children with ASD in six cities in New Jersey with large, low income, minority populations.  Specifically, we provide a breakdown of the demographics of the underserved children and their parents/guardians screened in the six cities.  

Methods: The program involved several related activities including: identifying cities and target sites, creating culturally relevant materials for education, and conducting community Autism Screenings in childcare and preschools using M-CHAT and/or SCQ with both parents and teachers.  Follow up interviews were then conducted for children with failed M-CHATs, and research evaluations (ADOS & Mullen subtest) for those who failed screenings.  In addition, developmental screening training was offered to healthcare providers and autism education materials were created for use in community outreach.  Outreach was provided to caregivers of children in these cities and other community members regarding normative child development, behavioral signs of possible developmental delay, and resources.  We also established Autism Screening Clinics in federally-funded health clinics in the target cities.  Demographic descriptive statistics were calculated for children and parent/guardians and screening results summarized.

Results: 886 Community Autism Screenings were conducted during the first 15 months of the project.   Two of the target cities contributed nearly 70% of children  who were screened.  The median age at evaluation was 56 months (mean=54.4, SD=10.6).  Just over 55% of the children screened were male and nearly 45% were female.   Over 65% of the children were on Medicaid and nearly 20% had no health insurance. Few had received early intervention program services. The parent or guardian who responded was usually female (78%, with data missing for 341 parents) and just over 68% had a high school diploma or less formal education with over 33% having only some high school (no diploma) or less than a ninth grade education (though data were missing for 380 parents).  Six percent screened positive after the M-CHAT follow-up interview (40% of these were lost to further follow up).  Nearly half of those receiving follow up who failed initial screening were subsequently found to have autism.

Conclusions: A successful screening program for children in underserved areas was established.  Successful access to a pool of underserved children was evidenced by the large majority of children receiving Medicaid or having no insurance, and the large proportion of their parents/guardians who had a high school diploma or less. Challenges associated with conducting developmental screening in this population will be discussed.