By Lauran Neergaard
Washington D.C. - 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.
"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 4½ 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.
