Autism Spectrum Disorder Screening Refusal Rates: Findings from a Statewide Early Intervention Program

Abstract

Emerging evidence of the efficacy of early intervention for autism spectrum disorder (ASD) has focused attention on the need for early identification of young children suspected of having ASD and thus on the implementation of routine ASD screenings. This study examined the refusal rates of ASD screening among infants and toddlers enrolled in EarlySteps, the State of Louisiana’s early intervention program. Participants (n = 4,296) were children aged from birth to 36 months who were enrolled in EarlySteps. The Battelle Developmental Inventory, Second Edition (BDI-2) and demographic section of the Baby and Infant Screen for Children with aUtism Traits- Part 1 (BISCUIT: Part 1) were administered to a parent or caregiver as part of the EarlySteps assessment protocol. ASD screenings were refused by 23.3 % of children sampled. Females were found to be at greater risk for screening refusal (adjusted odds ratio (OR) = 1.338, 95 % CI 1.106–1.618). African American children were less likely to have screening refused than other ethnicities (OR = .746, CI 95 % .609–.915). Previous diagnoses of Down syndrome (OR = 3.934, 95 % CI 1.785–6.462), cerebral palsy (OR = 2.744, 95 % CI 1.436–5.243), seizure disorders (OR = 2.271, 95 % CI 1.208–3.638), and other genetic conditions (OR = 2.271, 95 % CI 1.273–4.052) were also found to increase risk of refusal. Children with a family history of ASD were less likely to have screening refused (OR = .351, 95 % CI .244–.505). Clinical applications and the need for more research on factors related to ASD screening refusal are highlighted.