Study: Autism Not Diagnosed As Early in Minority Children

Tue, February 28, 2012

WASHINGTON -- Early diagnosis is considered key for autism, but minority children tend to be diagnosed later than white children. Some new work is
beginning to try to uncover why – and to raise awareness of the warning signs so
more parents know they can seek help even for a toddler.

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"The biggest thing I want parents to know is we can do something about it to
help your child," says Dr. Rebecca Landa, autism director at Baltimore's Kennedy
Krieger Institute, who is exploring the barriers that different populations face
in getting that help.

Her preliminary research suggests even when diagnosed in toddlerhood,
minority youngsters have more severe developmental delays than their white
counterparts. She says cultural differences in how parents view developmental
milestones, and how they interact with doctors, may play a role.

Consider: Tots tend to point before they talk, but pointing is rude in some
cultures and may not be missed by a new parent, Landa says. Or maybe mom's
worried that her son isn't talking yet but the family matriarch, her
grandmother, says don't worry – Cousin Harry spoke late, too, and he's fine. Or
maybe the pediatrician dismissed the parents' concern, and they were taught not
to question doctors.

It's possible to detect autism as early as 14 months of age, and the American
Academy of Pediatrics recommends that youngsters be screened for it starting at
18 months. While there's no cure, behavioral and other therapies are thought to
work best when started very young.

Yet on average, U.S. children aren't diagnosed until they're about 4 1/2
years old, according to government statistics.

And troubling studies show that white kids may be diagnosed with autism as
much as a year and a half earlier than black and other minority children, says
University of Pennsylvania autism expert David Mandell, who led much of that
work. Socioeconomics can play a role, if minority families have less access to
health care or less education.

But Mandell says the full story is more complex. One of his own studies, for
example, found that black children with autism were more likely than whites to
get the wrong diagnosis during their first visit with a specialist.

At Kennedy Krieger, Landa leads a well-known toddler treatment program and
decided to look more closely at those youngsters to begin examining the racial
and ethnic disparity. She found something startling: Even when autism was
detected early, minority children had more severe symptoms than their white
counterparts.

By one measure of language development, the minority patients lagged four
months behind the white autistic kids, Landa reported in the Journal of Autism
and Developmental Disorders.

It was a small study, with 84 participants, just 19 of whom were black, Asian
or Hispanic. But the enrolled families all were middle class, Landa said,
meaning socioeconomics couldn't explain the difference.

One of the study's participants, Marlo Lemon, ignored family and friends who
told her not to worry that her son Matthew, then 14 months, wasn't babbling.
Boys are slower to talk than girls, they said.

"I just knew something was wrong," recalls Lemon, of Randallstown, Md.

Her pediatrician listened and knew to send the family to a government "early
intervention" program that, like in most states, provides free testing and
treatment for young children's developmental delays. Matthew was enrolled in
developmental therapy by age 18 months, and was formally diagnosed with autism
when he turned 2 and Lemon enrolled him in Kennedy Krieger's toddler program as
well. In many of his therapy classes, Lemon says, Matthew was the only
African-American.

Now 7, Matthew still doesn't speak but Lemon says he is making huge strides,
learning letters by tracing them in shaving cream to tap his sensory side, for
example, and using a computer-like tablet that "speaks" when he pushes the right
buttons. But Lemon quit working full-time so she could shuttle Matthew from
therapy to therapy every day.

"I want other minority families to get involved early, be relentless," says
Lemon, who now works part-time counseling families about how to find services
early.

For a campaign called "Why wait and see?" Landa is developing videos that
show typical and atypical behaviors and plans to ask Maryland pediatricians to
show them to parents. Among early warning signs:

_Not responding to their name by 12 months, or pointing to show interest by
14 months.

_Avoiding eye contact, wanting to play alone, not smiling when smiled at.

_Saying few words. Landa says between 18 and 26 months, kids should make
short phrases like "my shoe" or "where's mommy," and should be adding to their
vocabulary weekly.

_Not following simple multi-step commands.

_Not playing pretend.

_Behavioral problems such as flapping their hands or spinning in circles.

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EDITOR's NOTE – Lauran Neergaard covers health and medical issues for The
Associated Press in Washington.