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Minority Children with Autism Less Likely to Receive Specialty Care

Researchers find ethnic disparities in services for autism-related medical issues; Autism Speaks working to close the gap
June 17, 2013


In today’s issue of Pediatrics, researchers report stark racial differences in the likelihood that children with autism receive specialty care for related medical conditions. Autism is commonly associated with a range of health conditions such as GI disorders, sleep disturbance and epilepsy.

The study looked at the medical records of more than 3,600 children with autism at Boston’s Massachusetts General Hospital. Mass General’s Lurie Center is one of 17 centers in Autism Speaks Autism Treatment Network (AS-ATN). The study’s lead author was Sarabeth Broder-Fingert, M.D. The study’s senior author, Jim Perrin, M.D., heads the AS-ATN’s federally funded Autism Intervention Research Network on Physical Health.

The access to care gap
Research has long shown racial differences in the age that children are diagnosed with autism and begin therapy. (Autism Speaks Early Access to Care initiative is dedicated to closing this gap.) Additional concern has focused on gaps in care for medical conditions associated with autism.

Dr. Perrin and his colleagues reviewed 11 years of medical records for 3,615 patients with autism, ages 2 to 21. Of these, 2,935 were white, 243 Hispanic and 188 African American. Another 249 had other ethnic backgrounds.

Around 37 percent of the white and Hispanic children received some specialty care for medical issues associated with autism. This was true of only 30 percent of the African American children.

The researchers found the most striking differences in gastroenterology (GI) care. GI disorders are common among those with autism. Around 14 percent of the white children had undergone GI evaluations. This compared to around 10 percent of Hispanic children and 9 percent of African-Americans.

Hispanic and African American children were also less likely to have sleep studies or psychiatric evaluations. Like GI disorders, sleep disturbances and mental health issues are relatively common among those with autism. So is epilepsy, which is generally detected through electroencephalography (EEG). Here, the three groups were similar: roughly 18 to 20 percent had undergone EEG.

What is causing racial gaps in healthcare
The researchers proposed possible explanations for the disparities:
* There may be ethnic differences in the rates of autism-associated medical conditions.
* Doctors may differ in how often they refer children of different backgrounds for specialty care.
* Families from different backgrounds may differ in how often they follow-through on such referrals.

In conclusion, the authors called for further research and clearer practice guidelines for doctors to reduce health disparities among individuals with autism.

AS-ATN clinicians have taken the lead in developing physician guidelines for autism-associated medical conditions, Dr. Perrin notes. Last year, they contributed to a special issue of Pediatrics dedicated to such guidelines.

Improving access to care for all children

Autism Speaks created the AS-ATN to provide high quality, coordinated medical care for children and adolescents with autism and associated conditions. “With our newest round of funding, we are looking for medical centers with innovative plans to extend the reach of the AS-ATN care model through partnerships with primary care providers,” says Clara Lajonchere, Ph.D., Autism Speaks vice president of clinical programs. “We are particularly interested in better addressing the needs of underserved groups including ethnic minorities.” 

Collaborating with minority communities

Through its Early Access to Care campaign, Autism Speaks is working to reduce racial and ethnic disparities in access to autism care. The organization is partnering with community-based organizations across the country to improve autism awareness, early intervention and health care. These partnerships include New York’s Korean-speaking community, Latino communities in California and a collaboration with the National Black Churches Initiative.

“As we develop these relationships, we’re looking forward to making a real difference in the lives of minority families affected by autism,” says Amy Daniels, Ph.D., Autism Speaks assistant director for public health research. “This includes increased access to the highest standards of care for the medical issues associated with autism.”

For more information on health issues associated with autism, see our webpages on Treatment of Associated  Medical Conditions and Treatment of Associated Psychiatric Conditions.