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I r YEARS AGO.

THIS
h STORY

THE
EXPERTS^THINKING
u
u
n

i='^

HAVE BEEN BUSTED,


AND AWARENESS HAS SKYROCKETED, EIVE YEARS
EROM NOW, WE WILL LIKELY LEARN SOMETHING NEW THAT
CHANGES EVERYTHING ALL OVER AGAIN, BUT

-WHAT WE KNOW

NOW ABOUT

AUTISM
COULD CHANGE A CHILD'S LIFE.
BY KELLEY KING HEYWORTH PHOTOGRAPHY BY AMY MIKLER

april 2013 / 83 / parenting,com

'Wlien he turned 5 in October,


Spike Robinson celebrated
with his parents, three siblings, and a pink cake decorated
with M&M's and lollipops.
It was your standard birthday bashexcept when it was
time to sing. "Spike asked us
to do it very slowly, and in a
whisper," recounts his mom,
Shavon Brown-Robinson, who
lives in Dania, FL. "And then
he didn't want us to cut the
cake. He didn't want it ruined."
Hefinallyrelentedand then
burst into tears. "But he got
over it and had a big slice," says
Brown-Robinson proudly.
For most kids, a birthday
party is a milestone; for Spike,
it was a miracle. Just a couple
years before, he hated celebrations. "Whenever there
was singing or clapping, he'd
start screaming," says BrownRobinson. By the time Spike
was 3, he was struggling to
make conversation and walking on his toes. It was clear
he was more than quirky.
Brown-Robinson made an
appointment for him to be evaluated at the Miami Children's
Hospital Dan Marino Center.
Spike was indeed diagnosed with autism, also known
as autism spectrum disorder

(ASD), which ranges from mild


social awkwardness to sensory
problems (trouble dealing with
certain sounds or textures) to
an inability to talk or take care
of oneself at all.
"I was so scared for that
diagnosis," Brown-Robinson
confesses, "but the moment
we got it, the doors started flying open."
Before Spike was born, such
a story might not have existed.
In just the pastfiveyears,
experts' thinking on autism
has changed, myths have been
busted, breakthroughs have

N88

Autism is being called


an "epidemic."
Verdict: TRUE
The "A" word is enough to rattle
any parent: Nearly two-thirds
of young moms and dads are
concerned their child will be
diagnosed with ASD, according to a recent survey by the
Florida Institute of Technology.
Ifs no wonder, given the runaway rates. Whereas 1 in 150
kids was diagnosed with some
form of autismfiveyears ago,
1 in 88 kids is on the spectrum today. These rising rates

NUMBER OF OHILDREN ON
THE SPEOTRUM, UR EROM
1 IN 150 EIVE YEARS AGO

been made, awareness has skyrocketed, and children are


making the sort of rapid, meaningful progress that previously
would have been unimaginable.
In a couple years, we will learn
something new that changes
everything all over again.
But what we know
right now could
change a child's life.

inspired Bob Wright, cofounder of Autism Speaks, to


say, "We have an epidemic on
our hands.... It is imperative
that the U.S. government steps
up its commitment to helping people living with autism
today." Last November,
the first congressional
hearing on autism in
ten years was held

UN 5

CHILDREN WITH
AN AUTISTIC
SIBLING WILL
HAVE IT, TOO

to determine what the federal


response should be.
Ifs the mystery as much as
the increasing prevalence that
we fear: Autism has no certain
cause or simple cure. Ifs such
an enigma that ifs symbolized in awareness campaigns
by a puzzle piece. But that's
changing. "In the past five
years alone, millions of dollars
have been spent on researching autism, and we now know
a tremendous amount about
it," says Rebecca Landa, Ph.D.,
director ofthe Center for
Autism and Related Disorders
at the Kennedy Krieger
Institute in Baltimore.

Autism oniy begins


after birth.
Verdict: FALSE
Fifty years ago, autistic behavior was blamed on "refrigerator
moms" who were too unfeeling
to teach their children social
skills. "Now we know there's
a host of genes and environmental factors that are likely
involved," says Susan Hyman,
M.D., professor of pediatrics
at the University of Rochester
Medical Center and chair of
the American Academy of
Pediatrics (AAP) subcommittee on autism.
More than 400 genes have
so far been linked to autism
risk. Some are passed through
familiesone infivechdren with an autistic sibling
will have it, too. Others are
gene mutations that form
at conception. One possible
contributor to autism's rise is
that people are having babies
later. The chance for gene
glitches increases as parents
especially dadsage, explains
Irva Hertz-Picciotto, Ph.D., an
environmental epidemiologist
at the MIND Institute at the
University of California, Davis.
But delayed childbearing explains only a very
small fraction ofthe
rise in autism rates.
Environmental factors may turn many
autism genes "on"
oMIIiSTONESCONTINUEONP. I

The following are normal social,


verbal, and emotional milestones
for babies and toddlers. Keep in
mind tliat every child develops
differently. If you have concerns,
talk to your pediatrician.

3 MONTHS
IMITATES SOME
MOVEMENTS
AND FACIAL
EXPRESSIONS

4 MONTHS

8 MONTHS

BEGINS TO

b MUNI Ho

0 MUNI Ho

RESPONDS TO

DEVELOP SOCIAL
SMILE

MAKES SOLID EYE


CONTACT

APPEARS JOYFUL
OFTEN

EXPRESSIONS OF
EMOTION

april 2013 / 84 / parenting.com

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or "off," says Dr. H5TTian. "The


best studies we have now
point to things that babies are
exposed to in the womb, when
the brain is forming," says
Hertz-Picciotto. Living in areas
with high levels of air pollution (such as near a freeway),
having low levels of folie acid,
being overweight or diabetic,
and having a high fever during pregnancy all seem to up a
woman's risk ofhaving a child
with autism.
There are simple things
moms can do before and after
pregnancy that may reduce
risk. Hertz-Picciotto recommends taking 600 micrograms
(meg) of folie acid daily (most
prenatal vitamins have it)
before trying to conceive. Ask

their heads droop behind their


shoulders," says Landa.
Not allor even mostbabies who are stingy with
smiles or have poor neck
strength will go on to have
autism. However, parents
should note this possible sign
of delay and mention it to their
pediatrician so he can be more
aware of other warning signs
later. "It can also inspire parents to be more proactive about
their child's development," says
Landa, who recommends parents take extra care to point at
and label objects that interest
their children, and read simple
board books slowly and with
excitement to help their children make connections about
objects that they see outside

8MONTHS
RECOMMENDED AGE EOR ALL

your ob-gyn what medication you can use to safely bring


down a fever, and stock your
medicine cabinet with it during
pregnancy.

Babies can display


signs of autism starting
at around 6 months.
Verdict: TRUE
Autism is notoriously tricky
to spot in infants, mainly
because symptoms can mimic
other developmental delays.
But researchers have come up
with some reliable red flags.
Between 6 and 12 months,
babies who go on to have
autism are less likely to smile
and vocalize back and forth
with parents. "They aren't
tuned in to people, but things,"
says FredVolkmar, M.D., director of the Child Study Center at
Yale University. Certain motorskill delays can be a tip-off even
earlier. "We found that when
six-month-olds were laid on
their backs andpuUedupto
a sitting position, nine often
who went on to have autism let

TDBE

of storytime (learning that the


duck in a book is the same as a
duck in a pond, for instance).

If your child shows signs


at around 18 months, he
should he evaluated.
Verdict: TRUE
Autism isn't usually formally
diagnosed until around 18
months, when ifs clearer what
worrisome behavior persists.
A lack of words or communicative gestures Qike pointing),
and repetitive behaviors such
as sorting objects, are red flags
at this stage. These are things
your child's doctor should ask
about at the 18-month checkup,
when the AAP recommends
pediatricians screen all kids for
autism. "Once a child screens
positive, he then needs to see
a specialist for an evaluation,"
says Graldine Dawson, M.D.,
professor of psychiatry at the
University of North Carolina
and the chief science officer for
Autism Speaks.
The problem is many wellmeaning pediatricians tell

parents to wait and see.


"I knew something wasn't right
from the start," says Sarah
Calzone, whose son, Stephen,
now 6, has ASD. "He didn't
smile, and everyday sounds like
the crumpling of grocery bags
were like nails on a chalkboard
to him. His doctor kept saying boys were different." When
Stephen was 18 months, he'd
scoop his Little People toys in
a pile, scatter them, and repeat
the cycle."I begged the doctor, 'Can you trust my mother's
instinct on this one?'" Calzone,
who lives in Stratford, CT, is
grateful she pushed: She got the
name of a local specialist who
diagnosed autism, and thanks
to treatments at the Yale Child
Study Center, Stephen is doing
well in public school. He loves
soccer, says Calzone, "and has
several true friends."
"Parents should not 'wait
and see.' The earlier that
delays are identified, the
sooner you can help your
child," says Landa. Starting at
16 months, you can go online
andfillout the M-CHAT, a
free, AAP-approved screening tool (m-chat.org). Make an
appointment with your pediatrician if you're concerned with
the results.

Therapy can't "rewire"


the autistic hrain.

Verdict: FALSE
Experts like Dr. Dawson and
Landa think age 1 to 2 is prime
time to start autism treatments.
"The younger the brain is, the
more changeable it is," says
Landa. In her clinics with toddlers, Landa teaches parents
to imitate the way their children play and then help them
learn to do new things with toys.
Being a "play partner" in this
way may help build communication circuits in the brain.
Karin HiU credits play-partner
sessions for helping her daughter Natalie, who wasflaggedas
high-risk for ASD at age 1. "All
Natalie wanted to do was tap the
window. I thought, 'How is this
going to work?' It was incredibly

frustrating for a long time. But


I started tapping the window,
too," says Hill, who lives in West
Chester, PA 'All of a sudden,
Natalie looked in my eyes and
smiled. I felt like I could cry."
For children 2 and older.
Applied Behavioral Analysis
(ABA) is the gold standard. In
ABA teachers and parents show
kids how to, say, ask for a drink of
water; when they do it, they get
a reward, Mke a piece of candy,
and are encouraged to do it again.
Oneespeciallypromisingformof
ABA is Pivotal Response Training
(PRT), which rewards children
with items related to an activity
(a chud who cares for a teddy bear
might begiven the bear). "After
PRT, Stephen's speech therapist
asked ifwe'd put him on medication," says Calzone. "The social
gains were that amazing." Ifyou
have an autistic chud over 2, look
for an ABA or PRT therapist near
you in the Resource Guide on
autismspeaks.org.
Following Spike's diagnosis,
Brown-Robinson turned her
fear into action. She scouted
out local schools and autism
services. Through intensive
one-on-one exchanges with
teachers and special tools like
picture cards. Spike started
learning how to speak up, rather
than act out, when he was
uncomfortable. All of which
led to thefirsthappy birthday
of his 5-year-old existence.
KelleyKingHeyworth lives
with her husband and three
sons, ages 6,4, andl, in
Massachusetts.

M U i S ^ S CONTINUED FffiM P. M.

9 MONTHS
CRIES WHEN
PARENTS LEAVE

10 MONTHS
PREFERS
CERTAIN PEOPLE
AND TOYS

12 MONTHS

16 MONTHS

MAKES HAND
GESTURES LIKE
POINTING AND
WAVING

CONCERNED? FILL
OUT THE M-CHAT
SCREENING TEST
(M-CHAT.ORG)

april 2013 / 86 / parenting.com

18 MONTHS

2 YEARS

SAYS SINGLE
WORDS

SAYS TWO-WORD
PHRASES

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