Parents, Advocates Seek More Prompt Diagnoses
Of Minority Children
Story By KATHLEEN MEGAN & Photos By CLOE POISSON
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
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
"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
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
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
"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,"
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
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
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
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
"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."