Public Schools Can Help Close the Ethnicity-Autism Gap
It’s official: As of February 27, the U.S. Department of Education is proposing a two-year delay on implementing an Obama-era rule that identifies significant disproportionality by racial or ethnic status in the administration of the Individuals with Disabilities Education Act (IDEA). Currently, the rule is slated to take effect on July 1. The proposed delay is up for public comment during the next 75 days.
While civil rights and disabilities advocates want to see the rule implemented on schedule, many public-school leaders are wary of the rule. Meanwhile, Secretary DeVos has signaled her desire to reduce, not add to, the federal footprint on public education.
Research on ethnicity and special education is a minefield. Last fall, a study published in the peer-reviewed journal Educational Researcher took a stroll deep into that minefield. The study’s authors concluded that, when controlling for such factors as academic achievement and economic standing, students of color are less likely to be identified as having disabilities than white children. That study flies in the face of research indicating that children of color, especially African-American boys, are disproportionately identified as disabled. The tangled knot of ethnicity, socio-economic status, and cultural “norms” has been researched and opined upon for some 60 years. Pull any one thread and the knot tightens, leaving over and underrepresentation visible and systemic race and class-based imbalances in place. But, the measurement of such imbalances under federal auspices will have to wait, at least for now.
While ethnicity and economic status play roles in channeling children into special education, there is one handicapping condition where African-American and Hispanic children are woefully under identified: autism. Numbers offered by the Center for Disease Control and Prevention (CDC) attest to the differences: about one in 63 white children; one in 81 Black children; and one in 93 Hispanic children are diagnosed with autism. In addition, African-American and Hispanic children with autism are more likely to be diagnosed as intellectually disabled than white children with autism.
Researchers believe that autism is color blind, and if one in 63 is “the norm,” then the CDC’s data indicate that more than 20 percent of African-American and over 40 percent of Hispanic children on the autism spectrum go undiagnosed. Children of color are also diagnosed later — a likely explanation for the greater incidence and severity of the associated intellectual disabilities. How, in an era of exploding awareness of autism, has such a disparity come about? The answer is both ethnic and economic.
Ethnic and economic realities mean that families on the south side of Chicago, or the west end of North Dakota, or the north edge of West Virginia are isolated from professional services that can be used to diagnose and treat children on the autism spectrum. Along with geographic isolation, there may be other factors that work to the detriment of the child, such as a denial that the child has a problem; a suspicion of professionals; or a lack of knowledge, time, or resources to seek help. Developmental pediatricians and applied behavior analysts are as rare as teahouses in such areas. But unfamiliarity, time, and distance are only a few of many obstacles that stand between concerned parents and help for their child.
However, there is one service obligated to help in such situations that is ubiquitous in these United States: public education. Under IDEA, school districts and public health agencies are required to identify, evaluate, and serve children with special needs from birth to age 21. School districts are supposed to conduct a “Child Find,” meaning they must actively search for neonates, toddlers, and preschoolers who need help to be ready for school. In about three quarters of the states, health departments are the lead agency in this process, while schools take the lead in the remaining states. Regardless of which group is the lead, schools and health departments are required to work together to find and serve very young children with behavioral, physical, or developmental challenges. Such children are entitled to services, at no cost to their families, which address their issues and move them toward school readiness.
For over a quarter of a century, Child Find has been the law of the land; yet it is largely unknown, spottily implemented, and seldom subject to federal enforcement. The disincentive for school districts is obvious. Finding a two-year old with severe autism might require the district to provide $75,000 of services annually for that child to address school readiness issues. The significant costs of these services — therapeutic, not educational, in nature — highlight the need for greater clarity and cooperation between schools and health-insurance providers focused on young children with autism. But because the responsibility for Child Find is not well understood by the public or by many health-care professionals, it is poorly executed with little consequence for the school district. There are, of course, dire consequences for children and families in need.
Yes, there is dramatic disparity by ethnicity of those identified with autism. However, that gap can be reduced, and perhaps one day eliminated, by enforcing the Child Find component of the Individuals with Disabilities Education Act. Laws not enforced breed contempt. Today our public schools need to do their part to keep the United States a nation of laws and a nation of laws enforced.
Mark Claypool and John McLaughlin, Ph.D. are CEO and Director of Research & Analytics respectively of ChanceLight Behavioral Health, Therapy, and Education. Their most recent book is “How Autism is Reshaping Special Education: The Unbundling of IDEA” (Rowman & Littlefield, 2017). Follow them @MarkClaypool and @ReFrameEd.