Autism now diagnosed early Therapy for toddlers makes 'huge
difference'
By Kim Painter
Special for USA TODAY
Two-year-old Nathan Katzman seemed different ''from the moment he was born,''
says his mom, Nicole. ''Looking back, I think it was something about eye
contact.''
Dad Gary agrees: ''Instead of looking at us, it was like he was looking
through us.''
The unsettling signs kept coming. ''You'd call his name and get no
reaction,'' says Gary, a Lincoln, R.I., cardiologist. ''We'd play little baby
games, going 'goo, goo, goo,' and get no reaction.''
When Nathan had no words, or even any babbling that resembled words, several
months after his first birthday, his parents really started to worry. They
thought their son might be deaf.
Instead, he was diagnosed with autism, making him one of a growing number of
autistic children diagnosed as toddlers.
His parents hope early diagnosis and therapy will make all the difference.
And experts say that it just might: ''You can make a huge difference if you get
there early,'' says Amy Wetherby, an expert in communication disorders at
Florida State University in Tallahassee.
People with autism and related disorders, sometimes called autism spectrum
disorders, or ASD, have trouble communicating, lack appropriate social skills
and displayunusual, repetitive behaviors. Many are mentally retarded. But the
severity and exact mix of problems vary enormously. Though some autistic
children never speak or learn basic self-care, others grow up to lead
independent lives.
And because the exact nature of ASD can be hard to pinpoint in young
children, many doctors have been reluctant to label toddlers. Studies suggest
the average age of diagnosis in the USA has been about 3, Wetherby says.
But that seems to be changing. One reason is that parents and pediatricians
are becoming more aware of autism. At the same time, researchers are learning
more about the earliest signs and gaining confidence in the value of early,
intense therapies that systematically teach children everything from eye contact
to play skills to conversational techniques.
Not all children respond, but for many, the therapies can raise IQs, improve
communication and social skills and lessen the need for special education. And
that's in children identified between ages 3 and 5. Researchers hope they will
do even better with children found earlier.
''Early detection means earlier access to intervention during sensitive
periods of brain development,'' says Rebecca Landa, a speech pathologist who
leads an autism study center at the Kennedy Krieger Institute in Baltimore. The
institute is one of eight centers awarded grants by the National Institutes of
Health as part of a $65 million, five-year effort to address rising concerns
about autism.
While autism was once thought rare, recent government studies found ASD in
three in 1,000 children around Atlanta and almost seven in 1,000 children in
Brick Township, N.J. A recent California study found a doubling of childhood
autism cases in only four years.
Whether the increases are real or the product of better diagnosis is unclear.
Whatever the case, there is no blood test or brain scan that can diagnose
autism at any age. Instead, doctors must rely on behavior. And, in the past,
they often didn't know what to look for in very young children.
That's where the work of Landa, Wetherby and others comes in. For the past
few years, Landa has been tracking a group of infants and toddlers who have
siblings with autism. Previous, anecdotal reports suggest that up to 10% of
these children will be autistic, too. So Landa is finding repeat cases among her
subjects and collecting data on how affected children differ from unaffected
children at the earliest ages.
And Wetherby has been screening thousands of Florida toddlers, looking for
telltale signs in those later diagnosed with ASD and other developmental
problems. Both researchers say they now can spot virtually any child with ASD by
age 2 -- some much earlier.
How early? Though no one would diagnose a 6-month-old with autism, warning
signs can appear by then, Landa says. A typical 6-month-old, she says, has a
rich social repertoire. ''If I make a face, they'll laugh,'' she says. ''If I
babble and then am quiet and let the baby know I'm just waiting, the baby will
vocalize. That's turn-taking. That's a mini-conversation. They might not do it
every time, but they should do it often.''
A baby headed for autism, Landa says, often lacks that basic ability to
connect. And there may be other signs. For example, instead of burbling and
babbling with a variety of sounds, a baby in trouble may produce nothing but
high-pitched squeals. By 14 months, she says, the signs can be quite clear.
''What you really want to look for is an integrated social approach . . .
eye contact, a smile, combined with some kind of social bid.'' A typical
child, she says, uses gestures, sounds and facial expressions to ask an adult to
look at something, get something or play a game, and the child reads those cues
in others. An autistic child might point, use words or make eye contact while
lacking the total communication package.
Wetherby agrees. She says she worries when any child over age 1 can't
coordinate gaze, facial expression, ges- tures and sounds into a smooth
communicative approach.
Joy and Daniel Johnson of Elkridge, Md., know the signs too well. Their
3-year-old son, James, who had speech delays and other signs, was diagnosed with
autism at 28 months. Now their 18-month-old son, John, ''is not talking at
all,'' Joy says. ''And he really doesn't have any eye contact. When you call his
name, he very rarely turns around.''
John also likes to throw toys and repeatedly open and close doors. Most
distressing, says Joy, is ''he doesn't express his wants and needs in any shape
or form'' except crying.
But, through Landa's study, John was diagnosed early and already is getting
speech and occupational therapy. Soon, he will begin a therapy called floor
time, in which parents and therapists get down on the floor with a child and
follow his lead to draw him out and get him communicating.
Of course, most parents don't have a top researcher monitoring their
children's development. They depend on neighborhood pediatricians, nurses and
preschool teachers. And many professionals still don't recognize early signs or
appreciate the value of early treatment, say autism treatment advocates.
''Often, parents will express a concern and they'll hear, 'Oh, don't worry.
. . . Einstein was a late talker,' '' says Nancy Wiseman, president of
First Signs Inc., an organization she founded to promote early identification of
autism and other developmental disorders.
Wiseman, of Merrimac, Mass., has a 7-year-old daughter who was diagnosed with
ASD at 26 months and underwent intensive treatment. Sarah has some problems with
attention, mood and speech, but she attends a regular first grade and is ''very
gregarious, very bright,'' Wiseman says. Without early treatment, ''my child
would have been lost to me.''
To give other families the same opportunity, Wiseman, a former corporate
communications executive, has put together a kit that gives doctors tips for
fitting developmental screening into busy practices. The kit also contains a
video with footage of typical toddlers and those showing signs of trouble. After
a trial mailing to doctors in New Jersey, Wiseman is working with health
officials in Minnesota to train doctors, educators and others to recognize
children at risk. She hopes to launch a nationwide campaign.
That means that, eventually, even more parents will start their battle with
autism early. They will have no guarantees of success. But they will have hope.
Nathan, now 2, is ''starting to come around a little bit,'' says Gary
Katzman. ''Sometimes he sounds like he's saying something.'' But Nathan also
still screams when he is frustrated, spins in circles to entertain himself, and
bangs toy cars against the wall.
Katzman says he fantasizes that maybe Nathan will grow up to be ''just a
little strange'' but able to function in the world. But he also can imagine a
future in which his son ''never really talks and is always the way he is now,
infantile.''
''That's what kills me,'' he says. ''I just have no idea.''
DISCLAIMER:
All information, data, and material contained, presented, or provided here
is for general information purposes only and is not to be construed as
reflecting the knowledge or opinions of the publisher, and is not to be
construed or intended as providing medical or legal advice. The decision
whether or not to vaccinate is an important and complex issue and should
be made by you, and you alone, in consultation with your health care
provider.
"A foolish faith in authority is the worst enemy of truth."
-- Albert Einstein, letter to a friend, 1901
"I know of no safe depository of the ultimate powers of the society but the people themselves, and if we think them not enlightened enough to exercise control with a wholesome discretion, the remedy is not to take it from them, but to inform their discretion by education."
-- Thomas Jefferson, letter to William C. Jarvis, September 28, 1820
"What's the point of vaccination if it doesn't protect you from the unvaccinated?"
-- Sandy Gottstein
"Who gets to decide what the greater good is and how many will be sacrificed to it?"