Multistage Autism Screening in Early Intervention Settings May Reduce Disparities
Incorporating a multistage screening process for autism spectrum disorder (ASD) into federally funded early intervention services may reduce disparities in early ASD diagnosis, according to research supported by the National Institute of Mental Health (NIMH). The study was led by researchers in the NIMH-funded ASD Pediatric, Early Detection, Engagement and Services Research (PEDS) Network.
Early identification can help children with ASD receive services and supports as early as possible. Research shows that children who receive this kind of early intervention tend to have better daily functioning and well-being over the long-term. However, many families may not receive early screening and diagnosis due to disparities in access. Research has shown, for example, that families with low household income, families that are non-English-speaking, and families that belong to certain racial or ethnic minority groups are much less likely than other families to receive timely ASD identification.
Although federally funded early intervention services are available to families with children younger than 3 years old in all U.S. states and territories through Part C of the Individuals with Disabilities Education Act (IDEA), these services vary in quality and availability across early intervention sites. A research team led by R. Christopher Sheldrick, Ph.D., of Boston University, and Alice S. Carter, Ph.D., of the University of Massachusetts Boston, examined whether implementing an evidence-based, multistage screening procedure at federally funded early intervention sites could help address site-to-site variation and reduce disparities in ASD screening and diagnosis.
Working with the Massachusetts Department of Public Health, the research team implemented the screening procedure at three early intervention sites in Boston. The sites were chosen based on documented levels of poverty and other social indicators associated with health disparities. The study sample included 33,326 children aged 14 to 36 months with no prior ASD diagnosis.
The researchers developed a three-part screening and diagnosis process that included both clinicians and caregivers as key decision-makers. In the first stage, early intervention specialists administered two screening questionnaires that assessed the children’s social and emotional development and autism symptoms. In the second stage, the specialists administered an observational ASD screening tool designed for young children.
If a child had positive screening scores or the specialist or family expressed concerns about ASD, the family continued to the third stage of the process. The third stage included a comprehensive ASD evaluation led by a licensed psychologist. The clinician determined whether the child met the criteria for an ASD diagnosis and reported their determination to the child’s family and the early intervention specialists (with family permission).
The research team provided support and training to staff at the three study sites throughout the implementation period. All study materials were available in English and Spanish, and the study included Spanish-speaking early intervention specialists and research staff.
The researchers compared findings from the three implementation sites with data from nine other early intervention sites that served similar populations.
After the screening procedure was implemented, the three study sites showed an increased rate of ASD diagnosis, representing an additional 8.1 ASD diagnoses per 1,000 children per study quarter (i.e., per every 3-month period that the sites participated in the intervention).
Notably, the increase among Spanish-speaking families (15.4 additional ASD diagnoses per 1,000 children per study quarter) was more than double the increase observed among non-Spanish-speaking families (6.9 additional ASD diagnoses per 1,000 children per study quarter).
The results also showed that boys were more likely to receive ASD screening, and were more likely to have positive screening scores, compared with girls. Diagnosis rates did not vary according to any other demographic variables, such as insurance status, poverty levels, or race.
Together, these findings suggest that early intervention settings can play a pivotal role in reducing existing disparities by making ASD screening available to children and families with ASD. Although population data indicate that boys are more likely than girls to receive ASD screening and diagnosis, the researchers did not expect the outcomes of the screening procedure to vary by gender. They suggest that this difference underscores the importance of identifying and addressing potential disparities as they emerge.
The researchers note that they developed the screening procedure, in collaboration with the early intervention agencies, on the premise that the best decision-making is based not on screening scores alone but also on clinical judgment and input from families. This process includes a careful evaluation of the risks, costs, and benefits of screening. Further research is needed to identify the specific elements of the screening procedure that are necessary to improve outcomes. Identifying these elements is especially important given the cost and effort required to mount a multisite, multistage intervention of this kind.
Sheldrick, R. C., Carter, A. S., Eisenhower, A., Mackie, T. I., Cole, M. B., Hoch, N., Brunt, S., & Pedraza, F. M. (2022). Effectiveness of screening in early intervention settings to improve diagnosis of autism and reduce health disparities. JAMA Pediatrics, 176, 262-269. doi:10.1001/jamapediatrics.2021.5380