Bridging the gap in early autism diagnosis for minority children
This article first appeared in the St. Louis Beacon: When Kristen Days’ 1-year-old son Justice stopped saying “mama” and “dada” and no longer waved goodbye, her pediatrician told her not to worry. So did her friends. “Boys are like that,” one said.
But Days, the mother of another son, a year older than Justice, couldn’t ignore the feeling that something was wrong. She took Justice to be tested by a state-supported agency in Florida, where the family lived at the time. He was diagnosed with autism at 18 months.
During the next year and a half, Justice underwent the gold-standard treatment known as Applied Behavioral Analysis (ABA), a personalized plan of replacing one behavior with another. The first six months’ of therapy took place in Florida, the rest, in the St. Louis area after the family’s July 2012 move to Bel-Nor. Today, 3-year-old Justice is interacting with people in the therapeutic setting and at home.
“He’ll say things like, ‘Mommy, pineapple juice,’” Days said. “His teachers are very proud of how his speech is coming along.”
Early diagnosis and treatment such as the Days family found can help prepare children for the wider world, according to Washington University School of Medicine’s Robert Fitzgerald. Fitzgerald is working with research involving the medical records of 8-year-olds, that shows disparities in early diagnosis between between minority and non-minority children.
“Embedded in that is the suspicion that these minority children are being identified later, or not at all,” Fitzgerald said.
Language and cultural barriers
Statistics released last year by the Centers for Disease Control, broken down state by state, show that one in 72 Missouri children had a diagnosis of Autism Spectrum Disorder (ASD) in 2008. The incidence of the diagnosis per 1,000 children was also broken down by race: more than 14 per 1,000 were white children, compared to just under 10 per 1,000 for those of Asian or Pacific island descent, and roughly 9 per 1,000 from either black or Hispanic backgrounds. (The figures were adjusted to accommodate unequal numbers of children in the overall population and in each group.)
The compilation of Missouri records, through the project known as Autism and Developmental Disabilities Monitoring (ADDM), considered diagnoses of area children in St. Louis as well as the counties of St. Louis, Franklin, Jefferson and St. Charles. Barriers to minority diagnosis may include families' limited access to health-care providers, providers' lack of knowledge about autism, and parents' lack of education about child development, Fitzgerald said. "It's a very complicated issue. How do we better educate these families, how do we better understand some of the cultural differences that may exist?"
Fitzgerald recently attended a meeting with decision-makers, researchers and service providers at St. Louis Arc, an organization supporting children and adults with developmental disabilities. Theresa Strothkamp, who coordinates Arc’s children’s services, participated in a session for identifying challenges to early diagnosis and brainstorming solutions. Their efforts also sought to target families whose first language is not English.
“Language barriers and cultural barriers are huge. And St. Louis has huge Bosnian and Somalian cultures,” Strothkamp said.
Possible steps, with elaboration from Strothkamp, include:
- Coordinating disparate service providers and their varying philosophies: “We need one central point of entry into the system.”
- Posting flyers with links to videos demonstrating therapy in many languages: “We have to go to where these families are, in local grocery stores or Walmarts, Targets or local medical clinics.”
- Connecting with resistant communities, perhaps through religious leaders: “Some cultures focus on just accepting the child, and they don’t think the child needs services.”
Some of the money for implementation could come from grants and from the “Child Find” committee of Missouri’s “First Steps” program for early intervention, Strothkamp said: “They have some limited resources.”
Gap is narrowing
Even if more children were diagnosed, they might not get the right kind of treatment. Missouri law now requires insurance carriers to provide ABA but it’s not covered under Medicaid, the only source of medical coverage available to many of Arc’s low-income clients.
“Medicaid can provide for occupational therapy, speech-language therapy and physical therapy, but not those intense behavior services that these children require to succeed,” Strothkamp said.
Some behavioral services are provided by school districts, even for children who lack a formal assessment.
“They do not have to have a medical diagnosis of autism or autism spectrum disorder to receive IEP [individual education plan] services,” Strothkamp said. “They just have to meet the eligibility criteria of the state Department of Elementary and Secondary Education.”
Meanwhile, events such as the recent one at St. Louis Arc are being held across the country. Reports from these gatherings will be compiled and studied, according to Fitzgerald. He will continue to monitor the ongoing ADDM project involving diagnosis rates, whose next report will be released in 2014.
Looking at the big picture painted by the every-other-year reports, which began in 2002, it's clear that the situation is improving.
“We are seeing an increase in the number of racial-minority children being diagnosed,” Fitzgerald said. “The gap isn’t closed yet, but it’s narrowing.”