Racial and Ethnic Differences in Subspecialty Service Use by Children With Autism

Discussion

In a population of pediatric patients with ASD, we found significant racial and ethnic differences in use of subspecialty visits and procedures. To our knowledge, this is the first study to address these differences in subspecialty care for children with ASD. Use of subspecialty care was significantly different in GI/nutrition, neurology, and psychiatry/psychology. Use of procedures also differed significantly, with differences in GI studies among African American and Hispanic children (endoscopy, colonoscopy, and stool studies), and neuropsychiatric studies among Hispanic children (EEG, brain MRI, sleep studies, and neuropsychiatric testing).

Racial differences in use of care exist for many pediatric conditions.¹³ Studies of the National Survey of Children’s Health revealed that minority children were more likely to lack a usual source of care, have unmet medical and dental needs, experience transportation barriers to care, have problems getting specialty care, and lack mental health care.¹⁴ Minority children with neurodevelopmental or mental health conditions fare particularly poorly compared with their white counterparts. Multiple studies demonstrate decreased access to mental health services for nonwhite children.^15,16 For example, although African American children are more likely to exhibit symptoms of ADHD and depression, they are less likely to receive a diagnosis of ADHD or to use mental health services than white children.¹⁶ African American and Asian/Pacific Islander children are nearly twice to 5 times as likely as white children to report no mental health care in the past 12 months.¹⁴

A few studies address racial and ethnic differences specifically for ASD. In 2002, Mandell et al⁴ found that in a group of Medicaid-enrolled patients, African American children were diagnosed with ASD 1.5 years later than white children. The same study revealed that African American children were significantly more likely to carry an alternate diagnosis before a documented ASD. The authors speculate that the apparent disparity in time of diagnosis may reflect a lack of regular pediatric care, differences in expectations about treatment and services, or differences in presentation, although data to distinguish among these explanations are limited.⁴ A more recent study exploring severity of autism among children revealed that non-Hispanic white children were more likely to receive an autism diagnosis at the mild and moderate level of severity, whereas non-Hispanic black children were more likely to receive the most severe diagnosis.¹⁷ The study postulates that African American children with mild and moderate autism did not receive timely evaluation.

Differences in presentation of ASD may also exist. Mandell et al⁵ found that African American children with ASD were more likely to have a lower IQ than white children. It is possible that these differences in IQ could lead to differences in service use. If only African American children with a lower IQ are being appropriately diagnosed with ASD (ie, African American children with an IQ above 70 are being missed), they may have difficulty reporting complaints such as GI discomfort or depression leading to fewer services. In addition to differences in IQ, a study looking at behavior noted differences between white and African American children with ASD in 5 of 10 domains.¹⁸ Using the Baby and Infant Screen for Children with Autism Traits, the authors found African American children with ASD were more likely to exhibit aggressive behaviors than their white counterparts, whereas no differences were seen in stereotypic or self-injurious behavior. More aggressive behavior in minority children could explain a decrease in service use. Minority children’s difficulty with aggression could become the main focus of their clinical encounters, with other issues such as depression, anxiety, or gastrointestinal issues not addressed.

Although multiple studies address presentation and diagnosis, data on other health services are limited. Liptak et al¹⁹ and Thomas et al²⁰ showed differences in autism-specific service use between minority and white children with ASD. Minority children were less likely to have a case manager, see a psychologist or developmental pediatrician, or use sensory integration services. Mandell and Novak²¹ showed that Latino children are 6 times more likely to use nontraditional treatment compared with white children. In addition, African American parents may be less likely to view ASD symptoms as related to a health condition or less likely to seek care through a traditional medical system.^5,22

The current study builds upon previous work examining racial differences in children with ASD. The differences in subspecialty care noted in our findings could be explained by a number of factors. First, it is possible that minority children have different presentations of comorbid conditions from white children and therefore require different services. For example, white children with ASD may have more GI or psychiatric issues requiring greater service use.

Second, physician referral bias may play a role. If physicians believe that white children with ASD require more services or have higher likelihood of comorbid conditions than nonwhite children, they may refer white children for specialty care at a higher rate. Whether these higher rates reflect more appropriate care for white children or overuse of specialty services cannot be determined from our data.

Self-referral may also play a role in service use. Ming et al²³ found that parents initiated the majority of ASD referrals to their neurology practice. Patients with ASD may therefore access subspecialty care without referral from other physicians. It is important to note that although ASD is known to be associated with increased rates of co-occurring disorders, no specific standards of care exist for the evaluation and care of these comorbidities.^22–26 Despite the lack of guidelines, many children with ASD receive care from multiple providers including neurologists, psychiatrists, gastroenterologists, and speech pathologists. Multiple studies have revealed that when a testing or treatment modality is new, white patients have better access than minority patients.^27–29 It is possible that in our population white patients with ASD receive care beyond the basic standard care, whereas nonwhite children receive only the minimal care necessary.³⁰

Finally, nonwhite and white children may present with similar complaints with similar rates of referral, but nonwhite children may not follow-up with referrals at the same rate as white children. Zuckerman et al³¹ showed that divergent beliefs between parents and providers regarding the importance of subspecialty referrals can lead to poor subspecialty follow-up by patients. Parents of nonwhite children with ASD may be less likely to complete a referral due to certain beliefs concerning the seriousness of the referral. African American parents also report more negative experiences with specialty care than white parents.³² These factors may influence referral completion in our patient population.

There are several important limitations of this study. First, our data represent a limited population from 1 major academic health center in Boston. Though the population is diverse, it may not generalize to other communities. Additionally, we did not correct for geographic location in our logistic regression, which could confound our findings. In their analysis of the National Survey of Children’s Health, Flores and Tomany-Korman¹⁴ found that nonwhite families were more likely to cite “transportation barrier” as a reason for unmet medical care needs. Census tract data from Massachusetts indicate large differences in geographic location by race.³³ If minority children live further from subspecialty providers, they may be less likely to see a subspecialist based on distance required to travel. Alternatively, they may receive subspecialty care at other hospitals that are closer to their place of residence that we are not able to capture in our database. Finally, our data set is extracted from medical records and therefore relies on accurate coding of ASD and other conditions and procedures by clinicians.

Several possible implications of these findings exist. If nonwhite children use needed subspecialty care less frequently than white children, greater outreach to clinicians and minority communities may be necessary to inform them of needed subspecialty care. Alternatively, if white patients are receiving unnecessary referrals and procedures, then there is a need for better education regarding what care is appropriate. Linking children with needed and appropriate services has particular importance in ASDs, given the difficulties such children face with doctors’ visits and procedures. Developing clearer practice guidelines based on evidence of the benefit of specific evaluations and procedures may help.