Autism now diagnosed early;
Therapy for toddlers makes 'huge difference'
by Kim Painter, USA Today,
June 19, 2003
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.''