In The Politics of Autism, I write about the experiences of different economic, ethnic and racial groups. Inequality is a big part of the story.
Mendez, A. I., McQueen, E., Gillespie, S., Klin, A., Klaiman, C., & Pickard, K. (2024). Access to Part C, Early Intervention for children younger than 4 years evaluated for autism spectrum disorder. Autism, 0(0). https://doi-org.ccl.idm.oclc.org/10.1177/13623613241229150
Lay abstract:
Health disparities are defined as preventable differences in the opportunities to achieve optimal health outcomes experienced by marginalized and underrepresented communities. For families with autistic children, health disparities limit accessing early intervention services—which have been found to improve quality of life and other outcomes. One specific early intervention service in the United States is Individuals with Disabilities Education Act, Part C Early Intervention programs, which are federally funded interventions for children birth-to-three with developmental delays. This study adds to this topic by examining which factors impact accessing Part C, Early Intervention services for children who were evaluated for autism. Results showed that only half of the sample received these services despite there being concerns about development for all children. In addition, results showed that those who identified as Black had decreased odds of having accessed Part C, Early Intervention compared to those who identified as White. These results suggest that there are disparities when it comes to accessing important early intervention services that may be negatively impacting the Black autistic community.
From the article:
This study provides important information on treatment disparities for children with an increased likelihood of having autism prior to receiving a diagnostic evaluation for autism. This is an important question to understand, given the growing recognition of the EI system being an entry point to therapeutic supports for many children who go on to receive a medical diagnosis of autism (Eisenhower et al., 2021). Although families of children with developmental delays are able to access Part C EI services irrespective of a medical diagnosis of autism, only half of the participating children were reportedly receiving EI services prior to their diagnostic evaluation, despite all children having developmental concerns that supported a referral for an autism evaluation. In fact, available data on clinical characteristics, including intellectual and developmental skills, revealed no significant differences between children who were and who were not reportedly receiving EI services. This finding persisted even when only considering children who were later diagnosed with autism—only 50% of autistic children had accessed EI services prior to their diagnostic evaluation. These children would have shown clinically significant levels of impairment in social communication and restrictive and repetitive behavior and therefore have all been eligible for EI services.
Although research has not yet examined the developmental trajectories of children who do and do not receive EI services, it is possible that delayed or no enrollment in EI services has negative consequences for child development and family well-being (Adams et al., 2013). Access to Part C, EI may also support enrollment into Part B special education services through the school system. Research suggests that 88% of children enrolled in Part C, EI go on to receive Part B services (i.e. special educations services), whereas only 46.5% of children with developmental delays receive Part B services if they were not previously enrolled in Part C EI services (Shenouda et al., 2022). Therefore, missing the opportunity to enroll in EI services can have long-term effects in the enrollment of and access to special education services after children turn 3 years old.
When investigating the unique role of sociodemographic factors on parent-reported access to EI services, race and age of first parental concern were each related to reported EI service access. More specifically, Black families reported a lower likelihood of having received EI services. This finding is largely consistent with literature demonstrating that Black children experience a number of disparities in accessing autism services, and EI services specifically (Constantino et al., 2020; Shenouda et al., 2022). However, we now know that these disparities are present within broader systems of care that support children prior to an autism diagnosis. Furthermore, the results of this study corroborate the importance of first parental concern (Angell et al., 2018). For this sample, children whose parents became concerned about their development at a younger age were slightly more likely to access EI services. Given that EI services are only available for children birth to 3 years old, it follows that those whose parents notice developmental differences earlier have more time to access those services.
