Autism And Race
Parents, Advocates Seek More Prompt Diagnoses Of Minority Children
Story By KATHLEEN MEGAN & Photos By CLOE POISSON
Autism And RaceWhen Ronnie Bonner Jr. was 21/2, his mother, Corendis Dawson-Bonner, was convinced that he had autism. While her pediatrician said not to worry, Dawson-Bonner was sure that his lack of language development, eye contact and social interests were symptoms of the disease.
“We would have a roomful of kids, and he would be off in his own little corner of the world,” Dawson-Bonner remembers. “He didn’t engage.”
In the next few years, doctors and other professionals would pin a wide array of labels on Ronnie – including developmental delay, attention deficit disorder, hyperactivity and a social and emotional disorder. Even obsessive-compulsive disorder and oppositional defiant disorder were mentioned.
Not until he was 6 was Ronnie finally diagnosed with autism.
Getting the right diagnosis and appropriate treatment has made all the difference, his mother says. Now 12, Ronnie is lively, affectionate and far more communicative. However, Dawson-Bonner can’t help but wonder how much better off he might have been if he had received the right treatment from the age of 2.
“He’s in the seventh grade, and he’s reading at a fourth or a fifth grade level,” she said. Why wasn’t he diagnosed sooner?
That’s a question that might be asked about many African American children with autism, who, according to one study of children on Medicaid, are diagnosed on average about 18 months later than white children.
While a year-and-a-half may not seem like a long time, it is in the life of a child with this developmental disorder, which affects normal brain function and impedes social interaction and communication skills.
“It is crucial to identify children with autistic-spectrum disorders as early as possible, as studies have demonstrated that the provision of early, intensive, high-quality intervention services is associated with improved outcomes,” said Dr. Thyde Dumont-Mathieu, a developmental pediatrician at the University of Connecticut with a clinical practice at St. Francis Hospital and Medical Center.
A toddler diagnosed with autism may qualify for 15 hours of services per week through the state’s Birth to Three program, Dumont-Mathieu said. However, if not identified, that same child may not get referred to the program, may receive less intensive services and may not benefit from the behavioral approaches recommended for children with autism-spectrum disorders.
Indeed, concern is widespread on both national and local levels about whether African American children and other minorities are getting diagnosed early enough or are being misdiagnosed.
“It’s a hugely important issue,” said Marguerite Colston of the Autism Society of America in Bethesda. “We have been crying out for attention to minority families with autism for years.”
Wendy Fournier, president of the National Autism Association based in Nixa, Mo., said the issue is “actually driving us crazy. … I think there are probably a lot of kids with autism in the minority community who are going undiagnosed.”
Fournier said her group is establishing a committee to reach out to minority communities. “At conferences we go to, there are no black people there, no minorities. It’s kind of freaky. It’s very, very noticeable.”
In Hartford, Merva Jackson, executive director of the nonprofit African Caribbean American Parents of Children with Disabilities, said she believes that many African-American children with autism-spectrum disorders are misdiagnosed as having disorders involving defiant, oppositional or behavioral problems.
“I think it’s just a lack of knowledge” on the part of African-American families about what autism is, said Jackson, as well as cultural insensitivities or racism on the part of doctors and other professionals who evaluate children.
In many ways, it is not surprising that there would be disparities and inequalities in the diagnoses and treatment of autism between white and African-American children. Research has shown that there are significant disparities in the quality of health care received by racial minorities compared to those received by non-minorities, even when insurance status and income are comparable.
The research results on whether African-American children with autism are diagnosed later than white children has been mixed, but David Mandell’s 2002 study of children on Medicaid is often cited as cause for worry.
Mandell, assistant professor at the University of Pennsylvania School of Medicine, studied children on Medicaid in an attempt to eliminate income as a factor in quality of care. He found that white kids were diagnosed at 6.3 years old, compared with 7.9 years for African American kids. This late age for diagnosis is “not good for anybody,” said Mandell.
It is better if children are diagnosed before age 3 so they can be helped through preschool intervention programs. Dumont-Mathieu of St. Francis said that in some cases, children as young as 18 months can be diagnosed.
Mandell’s study also showed that African American children were less likely – by 2.6 times – to receive an autism diagnosis on their first visit to a specialty care office and more likely to be misdiagnosed with conduct disorder and adjustment disorder.
Dumont-Mathieu emphasized Mandell’s study is not enough to prove definitively whether there are racial disparities in diagnosis of and care for children with autism. However, if such disparities do exist, she said there may be many contributing factors. First, she said, is access, including both distance to an autism specialist and insurance and cost concerns.
Cultural and communication differences can also create difficulties. If a patient comes in, Dumont-Mathieu said, and his mother says he’s not making eye contact and he’s flapping his arms, most pediatricians would probably have “autism flash across the brain.”
But if the parent said simply, “I’m worried about his behavior. They might not think autism. They may think Attention Deficit Disorder,” said Dumont-Mathieu. “I think sometimes that different communities may focus on different symptoms.”
Also, Dumont-Mathieu said, “I think the perception of normal and the set point for `I’m concerned’ may vary culturally,” she said. In some families, a young mother might simply talk to her mother or grandmother about her concerns, rather than approaching a doctor.
There may also be some racial stereotyping, Dumont-Mathieu said. “I know some [parents] have said their child as a black child is more likely to be labeled as having oppositional defiance disorder than as having autism.”
In addition, patterns or trends in behavior may be missed if a child does not see the same pediatrician consistently. Mandell said the expense of treating autism may also act as a disincentive to make that diagnosis. Socioeconomic factors can also be at play: It can be difficult to get to specialists and to get insurance coverage.
Dawson-Bonner believes the delay in her son’s diagnosis was at least partly because she is African American and because of her own socioeconomic background. “I don’t have a degree. My husband doesn’t have a degree,” she said. “I’m from Hartford.”
She feels doctors didn’t take her concerns as seriously as they could have. “I think if I’d been a white woman from the suburbs, it would have been completely different. I think they would have been more apt to find out the real thing [diagnosis] rather than `let’s hurry up and label this so we can get on with it.'”
Amy Nelson of Meriden recalls when her son, Daniel, was 3 years old, she was told he was mentally retarded. “But I questioned that,” said Nelson. “I said I know what mental retardation is, and this wasn’t that.”
She refused to accept that diagnosis and eventually – after seeing more doctors – was told that he had autism. “He had all the classic signs: He would talk to you through his animals; he could tell you everything about dinosaurs. … He had the flapping arms, the spinning…”
Getting the right diagnosis was like “running a race,” said Nelson. She attended conferences on autism where she often found she was the only black person present. Eventually she started a support group for black and Hispanic families with autistic children in New Britain, but it has since fizzled. Daniel, now 15, attends Maloney High School.
“You have to get yourself educated,” Nelson said of parents. “If you don’t know what certain things are, anybody can slap a label on your child.”