Autism Care Colored by Race

Autistic patients use of specialists shows racial disparities

/ Author:  / Reviewed by: Joseph V. Madia, MD

(RxWiki News) Early diagnosis of autism and adhering to the right follow-up treatment are very important. But not all people with autism may be getting the additional specialized care they may need. Finding treatment for both the physical and psychiatric ailments that often accompany autism can be a challenge.

A new study suggests that blacks, Hispanics and other non-whites who have been diagnosed with autism are as much as 60 percent less likely than whites to be treated by medical specialists.

"Get specialized care when it's needed."

Sarabeth Broder-Fingert, MD, a pediatrician at Massachusetts General Hospital for Children, led the study, which covered 11 years, ending in January 2011.

She and her research colleagues counted the number of visits that 3,615 Massachusetts patients who had been diagnosed with autism made to doctors specializing in gastrointestinal and nutritional care, sleep disorders, psychiatry, psychology, neurology and neuropsychiatry.

Of that group, 2,935 patients were white, 243 were Hispanic, 188 were black and 249 were of some other non-white race. Males made up 80 percent of the entire group, which ranged in age from 2 through 21.

According to the researchers, the odds of blacks and Hispanics being treated by a gastroenterologist or nutritionist were roughly one-third those of white children, while non-white individuals of other races had one-half the odds of seeing those specialists.

Also, compared to whites, blacks were half as likely to see a neurologist and Hispanics had about a 40 percent chance of seeing one.

When it came to psychiatric and psychological services, blacks were 56 percent less likely than whites to seek such care, Hispanics were 40 percent less likely and other non-whites were 38 percent less likely to do so. 

The researchers suspect that the gaps in specialized care result, at least partly, from how often and for which autistic patients doctors provide referrals to specialists. The gaps also may be related to how often patients who do get referrals actually follow up by seeing specialists.

Some parents also may be more aggressive than others in initiating the process of getting specialty care for their autistic offspring, the researchers added.

Glen Elliott, MD, PhD, chief psychiatrist and medical director of Children's Health Council, described the study's findings as "intriguing."

"But it is important not to jump to conclusions," added Elliott, who reviewed the study. "As the authors note, this could reflect over-utilization by some ethnic groups, under-utilization by others, or both. Their study was not designed to assess the appropriateness of or benefit from the specialist visits. 

"The authors correctly state that children with autism are at increased risk for a wide range of additional problems, both physical and behavioral, so the take-home message for parents may be that, if something feels ‘off’ with your child, do not just assume it is part of autism. Talk to the child’s primary caregiver and see if additional assessments are warranted.”

Whatever the reasons behind the racial gaps in specialty care, narrowing those gaps will require zeroing in on precisely why they exist, the researchers suggested.

“If non-white children use needed sub-specialty care less frequently than white children, greater outreach to clinicians and minority communities may be necessary to inform them of needed sub-specialty care,” researchers wrote. “Alternatively, if white patients are receiving unnecessary referrals and procedures, then there is a need for better education regarding what care is appropriate.”

Autism spectrum disorders are a group of neurodevelopment disorders that can severely impair a person's ability to communicate and to interact socially and emotionally with others. 

Autistic patients are known to suffer with higher rates of, among other issues, anxiety, gastrointestinal problems, seizure disorders, sleep disorders and attention deficit/hyperactivity disorder than people without autism, researchers wrote.

The researchers cited previous studies showing that black patients with autism were more likely than white patients to have no regular doctor or regular care and no case manager to coordinate the various kinds of care that many autistic patients may require.

Minorities, in general, either have less access to mental health care or do not access what's available to them, researchers also wrote.

At least one previous study of autism showed that, among patients with government-funded Medicaid health insurance, blacks were diagnosed 1.5 years later, on average, than whites. 

This study was published June 17 in Pediatrics.

One of Broder-Fingert's researcher partners reported getting grants from two organizations involved in, among other activities, autism policy research.

Reviewed by: 
Review Date: 
June 9, 2013
Last Updated:
July 31, 2013