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

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

Income and race-based inequalities were major barriers to accessing EIP support, researchers found.

“For infants and toddlers on the autism spectrum, early intervention is important for better outcomes later in life,” 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 in children with autism.”

In the US, early childhood access to EIP is required 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 been measured before.

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 an autism spectrum disorder. Less than half (1887; 47 percent) had received EIP services.

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

Although the research was conducted in New Jersey’s metropolitan areas, Shenouda said the findings have important implications nationwide.

New Jersey is known as an autism epicenter, but it also has many resources for detecting and treating autism. If only half of the children with autism in our study area receive early interventions, there is a good chance that the disparities will be even greater in other communities and regions with fewer services.”

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

Shenouda said there could be multiple reasons why children from disadvantaged and minority areas do not participate in EIP, such as lower rates of ASD screening or less likely adherence to recommendations. In both cases, targeted 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 improved support for the early intervention system. These actions will address economic and race-based inequalities in the reduce identification and care for autism.”