Fewer than half of autistic children receive intervention services before 36 months of age

Children's Health

Despite a federal mandate requiring access to early intervention programs (EIP) for children with disabilities, fewer than half of autistic children in four New Jersey counties received services before 36 months of age, according to a Rutgers study.

Income and race-based disparities were significant obstacles to accessing EIP support, researchers found.

“For infants and toddlers on the autism spectrum, early intervention is important for improved later-life outcomes,” said Josephine Shenouda, an adjunct professor at the Rutgers School of Public Health and lead author of the study published in JAMA Pediatrics. “We wanted to understand the level of early intervention participation among children with autism.”

In the U.S., access to EIP for young children is mandated by law as part of the Individuals with Disabilities Education Act. However, the extent to which children with autism participate in early intervention programs had not previously been measured.

Shenouda and her colleagues analyzed data collected between 2006 and 2016 by the New Jersey Autism Study, an autism spectrum disorder (ASD) monitoring system developed and maintained by researchers at Rutgers New Jersey Medical School.

By analyzing the medical and special education records of 23,441 children in Essex, Hudson, Ocean and Union counties, the researchers identified 4,050 8-year-olds with autism spectrum disorder. Fewer than half (1,887; 47 percent) had received EIP services.

The researchers linked cases to data representing different indicators of wealth, including median household income, and found that ASD children residing in affluent areas were 80 percent more likely to receive EIP services than children residing in disadvantaged areas. Black and Hispanic children also were less likely to participate in EIP.

While the study was conducted in New Jersey metropolitan areas, Shenouda said the findings have important implications nationwide.

New Jersey is known as an epicenter of autism, but it also has many resources for autism detection and treatment. If only half of the children with autism in our study area are getting early interventions, chances are the disparities are even more pronounced in other communities and regions with fewer services.”

Josephine Shenouda, adjunct professor at the Rutgers School of Public Health and lead author of the study

Shenouda said there may be multiple reasons why children from disadvantaged and minority areas aren’t enrolled in EIP, such as lower rates of ASD screening or less likely follow-through with recommendations. In either case, focused outreach can help increase EIP referrals and participation.

Shenouda added: “With autism prevalence estimates approaching 7 percent in some areas, we need universal autism screening between 18 and 36 months and enhanced support for the early intervention system. These actions will reduce economic and race-based disparities in autism identification and care.”

Journal reference:

Shenouda, J., et al. (2022) Disparities in Early Intervention Program Participation by Children With Autism Spectrum Disorder in a US Metropolitan Area, 2006 to 2016. JAMA Pediatrics. doi.org/10.1001/jamapediatrics.2022.2366.

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