By Stephanie Kimball
Autism affects thousands of families regardless of race, gender, or socioeconomic status. One in every 150 children in the US has been diagnosed with the developmental disorder and this ratio grows with every passing year. But who exactly is being diagnosed, and what do their cultural and socioeconomic statures illustrate about how many more cases are going silently overlooked?
In March, the American Journal of Public Health published a study entitled, “Racial/Ethnic Disparities in the Identification of Children With Autism Spectrum Disorders” which sought to determine the association between race/ethnicity and documented autism spectrum disorders (ASDs). In a cohort of 2,568 children aged 8, it identified children who were Black, Hispanic, or of another race/ethnicity to be less likely than were White children to have a documented ASD. The authors conclude that the way clinicians report ASD varies significantly between different ethnic populations. Clinicians are more likely to make a diagnosis of intellectual delay than ASD for Black and Hispanic children (American Journal of Public Health, 2009;99(3):493-8).
Unfortunately, these conclusions are of little surprise to anyone who has dealt with the significant up-hill battles associated with procuring an ASD diagnosis. Gary Goldstein, president and CEO of the Kennedy Krieger Institute at Johns Hopkins University, which has a large autism research program, has stated that the racial and class differences in diagnoses reflect the fact that getting a diagnosis often requires that parents be effective advocates, at least in the years before children arrive in school. “It’s not like leukemia or a broken bone where a diagnosis will be made no matter what your social class is,” said Goldstein, “You have to be an advocate” (Washington Post, “300,000 Children in U.S. Found to Have Autism,” May 5, 2006).
But is it that simple? Any parent regardless of race or socioeconomic standing who loves their child will fight the system in order to ensure the best care possible. Could the cause of these racial and socioeconomic disparities be due to the fact that many poor, minority youngsters do not have the same access to state-mandated services available to those identified as autistic? The Centers for Disease Control and Prevention seem to think so. In two different surveys they explain that white families with higher incomes are more likely to report having children with the disorder, a fact that federal experts said probably reflected unequal access to medical services. So if the quality of and access to healthcare in your neighborhood is poor it is a good indicator that a proper diagnosis may be harder to come by.
Despite significant progress in early detection techniques, a wide degree of variance amongst minorities still exists when properly identifying ASD. Consider these numbers: it is estimated that less than 50 percent of children are diagnosed before kindergarten (CDC, “Can Developmental Screening Provide Early Detection?” United States Department of Health and Human Services, October 29, 2004). A recent study of children enrolled in the federal health insurance program Medicaid found that the average age of diagnosis for white children with ASD is six years old, while African American children tend to receive a diagnosis about two years later (Reuters News Center, “Autism Diagnosis Comes Later for Blacks Than Whites,” November 22, 2002).
Recent national and California-specific surveys of parents report that Hispanic children are less likely to have an ASD diagnosis (CDC, “Fact Sheet, MMWR – ‘Parental Report of Diagnosed Autism in Children Aged 4-17 Years, United States, 2003-04’,” May 4, 2006). These findings indicate that there may be differences in symptom recognition and diagnosis across racial and ethnic groups, as well as disparities in access to information about ASD and continuity of health care.
The American Academy of Pediatrics (AAP) recommends that developmental screenings “be incorporated at every well-child visit” and “screening tests should be administered regularly at the 9, 18, and 30-month visits” (AAP, “Identifying Infants and Young Children with Developmental Disorders in the Medical Home: An Algorithm for Developmental Surveillance and Screening,” Vol. 118 No. 1 July 2006, pp. 405-420).
However, surveys of pediatricians show that few of them implement effective means to screen patients for developmental problems, and many pediatricians report being inadequately trained in developmental assessments and lacking time and reimbursement to conduct these assessments (AAP, “Identifying Infants and Young Children with Developmental Disorders in the Medical Home: An Algorithm for Developmental Surveillance and Screening,” Vol. 118 No. 1 July 2006, pp. 405-420).
All these facts indicate that we still have a long way to go to bridge the ethic and socioeconomic divides that continue to impede poor and minority communities from receiving adequate services for children with ASD. Currently, Congress is attempting to level the playing field through The Autism Treatment Acceleration Act which aims to meet the comprehensive needs of, and improve the quality of life for, individuals with autism and their families. While the legislation will undoubtedly reduce familial costs associated with ASD by mandating insurance companies to cover certain costs, it is unlikely to substantially impact poor and minority children whose parents do not have health coverage.
For true impacts to be made, Congress must incorporate the autism debate within the much broader ‘public option’ discussion. While there may be a host of unintended consequences from a government-backed healthcare system, for the purposes of this examination, no fair and equal treatment under the law will ever be afforded to poor and minority children with ASD until they have real access to quality healthcare.