Minority parents want prompt diagnosis of child autism

When Ronnie Bonner Jr. was 2 1/2, 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 he might have been if he had received the right treatment from age 2.

"He's in the seventh grade, and he's reading at a fourth or a fifth grade level," said the Hartford, Conn., woman.

Why wasn't he diagnosed sooner?

That's a question that might be asked about many black 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 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 in Hartford.

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. 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.

Concern is widespread on both national and local levels about whether black 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, Md. "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 black children with autism-spectrum disorders are misdiagnosed as having defiant, oppositional or behavioral problems.

"I think it's just a lack of knowledge" on the part of black 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 black children. Research has shown significant disparities in the quality of health care received by racial minorities compared to those received by nonminorities, even when insurance status and income are comparable.

The research results on whether black 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 black kids. This late age for diagnosis is "not good for anybody," said Mandell.

It is better if children are diagnosed before age — so they can be helped through preschool intervention programs. Dumont-Mathieu said that in some cases, children as young as 18 months can be diagnosed.

Mandell's study also showed that black 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.

Dumont-Mathieu emphasized Mandell's study is not enough to prove whether there are racial disparities. If disparities exist, she said there may be contributing factors. First, she said, is access, including both distance to an autism specialist and insurance and cost concerns.

Cultural and communication differences also can 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."

In addition, patterns or trends in behavior may be missed if a child does not see the same pediatrician consistently.

Dawson-Bonner believes the delay in her son's diagnosis was partly because she is black and because of her own socioeconomic background.

"I don't have a degree. My husband doesn't have a degree," she said.

Amy Nelson of Meriden recalls when her son, Daniel, was — 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 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 ... "

Nelson 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 but it has since fizzled. Daniel, now 15, attends high school.

"You have to get yourself educated," Nelson. "If you don't know what certain things are, anybody can slap a label on your child."

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