Identifying Barriers to Families Receiving Diagnoses and Services after a Positive Autism Screen in a Community Screening Study
1 in 59 children are identified with Autism Spectrum Disorder (ASD). The earliest signs of ASD, delays in social communication milestones that appear in the first 2 years, are routinely screened for at 18 months (AAP, 2007).Yet most children are not diagnosed until 4-5 years of age (Baio et al., 2018), and so miss out on the considerable positive impact of early intervention (EI) (Dawson et al., 2010). Underserved families are significantly underrepresented in research and are identified even later, restricting their access to EI (Hilton et al., 2010). The community faces many barriers to early screening and detection, including limited uptake of ASD screeners in pediatric practices and conflicts with the realities of EI services. While research shows that at age two, diagnoses are generally reliable and stable, sometimes professionals prefer to wait and see, due to uncertainties in subtle symptom-expression early on and the stability of an early diagnosis (Zwaigenbaum et al., 2009). Even with screening at 18 months, there are other barriers to children being diagnosed and receiving services, including the capacity of professionals to recognize red flags for diagnosis of ASD at a young age, the ability of Part C EI providers to recognize ASD in toddlers and provide evidence-based EI, and parental ambivalence and the ability to act on referral recommendations.
To explore outcomes for children who screen positive for ASD concerns on a community screening tool for the early detection of autism and communication delays and are invited for an evaluation at a local autism center.
As part of an ongoing multi-site community screening study, an electronic screener for early signs of ASD and communication disorders was offered to families with children aged 12-20 months online and in community settings, such as primary care practices and early learning centers. Families receiving a positive screening result were referred to EI and offered a no-cost diagnostic evaluation. The research team contacted families to schedule their evaluation and tracked whether or not families chose to participate and the results of the evaluation. Demographic questions on the screening tool allowed researchers to explore differences between those who did and did not participate in the evaluations.
Currently 2,632 families have taken the screener. Of the 223 families whose child had a positive outcome on the screening, 164 had been offered evaluations at the time of this abstract-56 completed the evaluation, 51 were not interested, 49 could not be reached, and 8 were cancellations/no-shows. Group differences based on parental age, race, family income, child’s age at screening and the amount of time between completing the screener and being offered the evaluation will be explored. Evaluation results for children who received the evaluation will also be presented.
Less than half of families who received a positive result on an early screener for ASD chose to participate in a no-cost diagnostic evaluation. As the first advocate for their children, parental ambivalence is a significant barrier to children receiving early diagnosis and services they need.