Racial and ethnic disparities in ASD diagnosis: What pediatricians should know

Although evidence suggests there are no consistent differences in prevalence of autism spectrum disorders (ASDs) according to race or ethnicity, there is also abundant research demonstrating racial/ethnic disparities in the diagnosis of ASDs. The latest data from the Autism and Developmental Disabilities Monitoring Network along with results from multiple previous studies show that compared with white non-Latino children, Latinos and African Americans are significantly more likely to be diagnosed with ASDs at a later age, if at all, and with more severe symptoms, or to be misdiagnosed with another condition, such as intellectual disability.^1-4

The importance of these diagnostic disparities is understood from evidence that early diagnosis of ASD confers better long-term developmental and functional outcomes for the affected individual and improves the family’s ability to cope with the disease.⁵ Furthermore, considering the high lifetime cost of caring for a child with autism, it is likely that increasing the proportion of children who receive a timely accurate diagnosis of ASD could result in substantial cost savings for society.

Research in the area of ethnic-racial disparities in ASD diagnosis has also identified a range of contributing factors, indicating in turn that interventions for rectifying the situation are needed on multiple fronts. Speaking to Contemporary Pediatrics, Katharine Zuckerman, MD, MPH, discussed some of the barriers to detecting ASD in minority children and what actions pediatricians can take to improve the situation.

First and foremost, pediatricians need to increase their screening efforts, says Zuckerman, assistant professor, Department of Pediatrics, Oregon Health and Science University, Portland. In addition, they need to be querying families to determine if they have specific concerns and take those concerns along with any screening test abnormalities seriously.

“Screening vastly improves autism detection compared to clinical impression, and the American Academy of Pediatrics recommends that specific screening for ASDs be done in children at 18 and 24 months of age. Pediatricians are less likely to make the diagnosis when it exists if they are not conducting the recommended screening,” says Zuckerman.

She points out that the problem of inadequate screening is not limited to minorities, but rather is a more pervasive issue. According to one study investigating child developmental assessment practices, less than one-third of pediatricians were using a formal screening tool.⁶ However, by screening all children, pediatricians can be more sure that they are identifying autism equitably. There are also specific minority-related issues to consider. Findings from a survey of primary care providers in California conducted by Zuckerman and colleagues showed that only about 10% of the physicians offered Latino children ASD and general developmental screening in Spanish when it was needed.⁷

“Pediatricians need to be offering screening and in the appropriate language,” Zuckerman says.

Further underscoring the importance of using standardized instruments to screen for ASDs in minority children is the fact that parents in these population groups may be less likely to express concerns about their child’s behavior and development.⁸ The reasons are varied and involve factors that pertain to the family, the community, and the healthcare system. One important consideration is a relatively low level of knowledge about ASDs among minorities. Therefore, even if red flags are present, parents may not put together the signs and become concerned about their child’s behavior.

“Someone who is unaware of a condition is unlikely to seek out the diagnosis, and in particular there seems to be low penetration of information about ASDs into minority communities. In focus groups we conducted, parents of Latino children diagnosed with ASD often commented that they had never heard the word ‘autism’ before their child received the diagnosis,” Zuckerman says.

Mental health-attached stigma is also prominent among minorities.⁸ Therefore, even if parents have concerns, they may not raise the issue with health professionals based on fear of the potential consequences their child will suffer if he or she is perceived as disabled or having a mental health condition.

Minority parents may also be less comfortable or feel intimidated about discussing concerns with healthcare professionals or may be limited by language barrier issues. It is also the case that pediatricians are less likely to ask minority families about their concerns.^9,10 In addition, parents who reach out to trusted family and friends for advice might have their concerns minimized by responses that normalize the child’s condition, preventing them from seeking out professional counsel as they should.

Against this background, the key messages for pediatricians are to routinely ask about developmental concerns at every well-child visit and to pay attention to any concerns minority parents express about their child’s early development and behavior.

“We know that parental observations are highly predictive of developmental delays in general and minority parents may have a higher threshold for expressing their concerns to the pediatrician. Recognize that it often takes significant effort and courage for these parents to raise issues with their child’s providers, and take the information seriously,” says Zuckerman. “Still the best thing pediatricians can be doing to make access to autism care more equitable is to screen everyone. Then, we should be able to detect a child with a problem whether or not the parent brings up any concerns.”

However, ensuring that the child receives appropriate services also depends on the pediatrician taking abnormal screening test results seriously. Zuckerman cautions providers not to dismiss the test findings based on their own biases.

“Pediatricians may attribute abnormalities in ASD and developmental screening tests to underlying medical disorders, complicated social situations that are more common among minorities, cultural differences, or language issues. For example, it is a common urban legend among pediatricians that it is normal for children in bilingual families to exhibit language development delays,” notes Zuckerman. “Do not disregard the test results just because there appear to be external contributing factors.”

Despite the scope of the problem, Zuckerman says she is encouraged by some recent data indicating that racial/ethnic disparities in autism identification are improving. “The reasons may reflect increased awareness of the problem among providers and families along with more widespread use of developmental screening tools. And, I am optimistic that the situation will continue to get better over time,” she says.

Meanwhile, Zuckerman notes that there is also a need for pediatricians as a community to be working toward the development of better ASD screening and diagnostic instruments. “Many of the tools in current use were not developed or validated in adequate numbers of minority children. We need instruments that we know will perform reliably in minority children,” she says.

REFERENCES

1. Autism and Developmental Disabilities Monitoring Network Surveillance Year 2008 Principal Investigators; Centers for Disease Control and Prevention. Prevalence of autism spectrum disorders–Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2008. MMWR Surveill Summ. 2012;61(3):1-19.

2. Mandell DS, Wiggins LD, Carpenter LA, et al. Racial/ethnic disparities in the identification of children with autism spectrum disorders. Am J Public Health. 2009;99(3):493-498.

3. Mandell DS, Listerud J, Levy SE, Pinto-Martin JA. Race differences in the age at diagnosis among Medicaid-eligible children with autism. J Am Acad Child Adolesc Psychiatry. 2002;41(12):1447-1453.

4. Palmer RF, Walker T, Mandell D, Bayles B, Miller CS. Explaining low rates of autism among Hispanic schoolchildren in Texas. Am J Public Health. 2010;100(2):270-272.

5. Johnson CP, Myers SM; American Academy of Pediatrics Council on Children With Disabilities. Identification and evaluation of children with autism spectrum disorders. Pediatrics. 2007;120(5):1183-1215.

6. Guerrero AD, Garro N, Chang JT, Kuo AA. An update on assessing development in the pediatric office: has anything changed after two policy statements? Acad Pediatr. 2010;10(6):400-404.

7. Zuckerman KE, Mattox K, Donelan K, Batbayar O, Baghaee A, Bethell C. Pediatrician identification of Latino children at risk for autism spectrum disorder. Pediatrics. 2013;132(3):445-453.

8. Zuckerman KE, Mattox KM, Sinche BK, Blaschke GS, Bethell C. Racial, ethnic and language disparities in early childhood developmental/behavioral evaluations: a narrative review. Clin Pediatr (Phila). September 10, 2013. Epub ahead of print.

9. Guerrero AD, Rodriguez MA, Flores G. Disparities in provider elicitation of parents’ developmental concerns for US children. Pediatrics. 2011;128(5):901-909.

10. Zuckerman KE, Boudreau AA, Lipstein EA, Kuhlthau KA, Perrin JM. Household language, parent developmental concerns, and child risk for developmental disorder. Acad Pediatr. 2009;9(2):97-105.

Ms Krader has 30 years of experience as a medical writer. She has worked as both a hospital pharmacist and a clinical researcher/writer for the pharmaceutical industry and is presently a freelancer based in Deerfield, Illinois. She has nothing to disclose in regard to affiliations with or financial interests in any organizations that may have an interest in any part of this article.