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How Young Is Too Young To Diagnose Autism?

Some Aim to Jump Start Treatment, but Symptoms Are Ambiguous in Babies

By SUEIN HWANG
Staff Reporter of THE WALL STREET JOURNAL
June 9, 2005; Page D1

When Pam Lyle's daughter Hailey was 13 months old, she suddenly lost her ability to speak and began retreating into her own world. Two months later, Ms. Lyle brought her to Yale University's Child Studies Center, where she got a diagnosis that is unusual for a child that young: autism.

Now, after 2½ years of intensive in-home treatment, Hailey makes eye contact and recently has learned to use pictures to communicate -- an outcome the Orange, Conn., family attributes to her early diagnosis.

Many specialists say autism isn't identifiable in most children until at least 18 months of age, when the behaviors that are the common hallmarks of the disorder are more apparent. While there are no statistics on average age of diagnosis, many children aren't diagnosed until age 3 or later. But thanks to studies showing that preschoolers often respond better to treatment than do children diagnosed at earlier ages -- as measured by gains in language and IQ scores -- specialists are exploring whether children diagnosed at even younger ages might fare even better.

Several studies, including research in Canada and at the University of California, San Diego, have tied the eventual diagnosis of autism to attributes observed in infants as young as 6 months of age. Autism specialists around the country say parents are increasingly bringing in toddlers and infants -- some as young as 4 months -- for evaluation.

At the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore, director Rebecca Landa says it once was rare to see even a toddler, but now the clinic sees "a minimum of one baby a week." Yale University's center is seeing a child under the age of 18 months every few weeks, says director Fred Volkmar. And researchers are eager to see these youngest patients. Whereas many families must wait a couple of years for an appointment at Yale, children under age 2 can get in to see a specialist in a few weeks to a couple of months.

Autism, a little-understood condition marked by social withdrawal, repetitive behaviors and poor communication skills, is believed to be the fastest-growing developmental disability. There are varying theories as to why autism is on the rise, from the use of mercury preservatives in childhood vaccines, to increased awareness driving more diagnoses. The Centers for Disease Control and Prevention in Atlanta estimates about 24,000 children are diagnosed annually, and that as many as 500,000 children in the U.S. have the condition.

Some experts are skeptical of efforts to diagnose autism in infants and toddlers in clinical practice. Autism typically is diagnosed once a child exhibits a certain number of behavioral symptoms, such as not making eye contact. With very young children there is a wide range of behaviors that could be considered normal. It can be hard to tell whether a behavior such as a lack of sociability in an infant is truly a symptom or just means the child hasn't yet reached a certain developmental level.


READING THE SIGNS

A selection of autism centers that will evaluate children under 18 months old:

o Albert Einstein College of Medicine's Children Evaluation and Rehabilitation Center, Bronx, N.Y.
718-430-3914
www.aecom.yu.edu/cerc/relate.htm
The center has offered "provisional" diagnoses to children as young as 12 months.

o Kennedy Krieger Institute's Center for Autism and Related Disorders, Baltimore, Md.
443-923-7680
www.kennedykrieger.org
Kennedy doesn't diagnose children under 18 months of age, but it will evaluate children and identify those "at risk" for an autistic spectrum disorder.

o University of Washington Autism Center, Seattle, Wash.
206-221-6806
http://depts.washington.edu/uwautism/

While it shies away from formal diagnosis for 1-year-olds, the center evaluates the child's behaviors and follows up at 18 months.

o Yale Child Study Center, New Haven, Conn.
www.autism.fm
The center will provide provisional diagnosis for babies and toddlers and follow-up at age 3.


"I don't know how you diagnose autism in a 12-month-old," says Sally J. Rogers, psychiatry professor at the University of California-Davis's M.I.N.D. Institute.

Even assuming autism can be identified in such young children, there is little research on what treatments might be appropriate. For children roughly 3 years of age and older, the main treatment for autism is intensive structured teaching of skills for many hours a week. Specialists who see infants and toddlers must experiment with adapting therapies for younger patients; some teach parents basic "floor-time" skills to do with babies at home.

Only a few specialists -- such as those at Yale -- are willing to diagnose infants and toddlers, and they typically offer a "provisional" diagnosis, acknowledging that the situation may yet change. Many centers prefer instead to observe a child's behaviors and suggest treatment for specific symptoms. The hope is that by identifying autistic symptoms in children when their minds are the most pliable, doctors could find something tantamount to a cure.

"The brain systems responsible for social engagement and speech perception are really developing between birth and age 2 very rapidly," says Geraldine Dawson, director of the Autism Center at the University of Washington in Seattle, who says she has worked with a 7-month-old child who exhibited autistic symptoms.

Identifying Children

The drive to diagnose children in infancy is unrelated to the theory that vaccines later in childhood are to blame for autism. The immunization theory, Dr. Dawson says, focuses on children who develop normally initially but then lose their skills, which she estimates is about 25% of autistic children. This new research is focused on identifying the remaining 75% who demonstrate symptoms very early on.

Specialists who evaluate infants point to a number of symptoms that could suggest trouble down the road. Even as early as a year, they say, most infants should be able to gesture, babble and interact with their parents. Parents of children diagnosed with autism often say they noticed differences even in infancy, when their babies showed little interest in engaging them or wouldn't look up even when called.

Lisa Shulman, a specialist in infant/toddler autism at the Albert Einstein College of Medicine's Children's Evaluation and Rehabilitation Center in Bronx, N.Y., points to one family whose only son was diagnosed at a year. The boy ignored his parents even when yelled at, didn't want to be touched, and was very focused on playing with spinning items like wheels. Five months of treatment later, the child has improved so dramatically his parents are reducing his therapy and enrolling him in a mainstream preschool, says Dr. Shulman, who believes the boy is no longer is autistic.

In cases of very young children and dramatic recoveries, some experts raise questions about whether the children were ever suffering from autism to begin with. And some researchers say they have observed children who appear to have autistic symptoms early on but later seem to grow out of them. Marian Sigman, a child-psychiatry professor at UCLA, co-authored a study looking at a group of 14-month-old siblings of autistic children who also had significant language delays (siblings are frequently studied as they have a higher likelihood of developing autism themselves). The study found that most of these children were normally developing by 54 months.

Clues in Infancy

Many specialists exploring early intervention point to research that links infants to autism. In late April, a study published by Canadian researchers at McMaster University, the Hospital for Sick Children in Toronto and the IWK Health Centre Halifax, Nova Scotia, found that kids later diagnosed with autism shared certain behaviors when they were younger -- such as decreased activity levels at the age of 6 months and using fewer phrases and gestures at 12 months. Another study published a couple of years ago by the University of California, San Diego, associated autism with small head circumference at birth followed by a sudden growth spurt before the end of the first year.

In a 2000 study, University of Washington researchers examined videotapes of babies ranging from 8 to 10 months of age and were able to distinguish those who would later develop autism in 11 out of 15 cases. The two symptoms that the babies tended to demonstrate the most frequently was a failure to respond to their names and lack of eye contact.

For her part, Ms. Lyle is grateful for the early diagnosis. If Hailey, now almost 4 years old, hadn't been treated so soon, her mother says, she would have "become one of these children who sits in a corner rocking and banging her head on a wall."

Write to Suein Hwang at suein.hwang@wsj.com

Corrections & Amplifications:

Studies of autistic children indicate that preschool-age children receiving intensive treatment show greater gains in language and IQ scores than children whose treatment begins at older ages. This article incorrectly said preschoolers often respond better to treatment than do children diagnosed at earlier ages.