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Children in the grip of autism

While the causes for the dramatic rise in autism cases over the past decade are the subject of much debate, one thing is certain: early diagnosis is crucial.
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Adam Walden’s best friend is his cello — and that’s just fine with him.

Like all children with autism and related disorders, the 8-year-old boy from Los Angeles has trouble interacting with others and forming relationships. Learning to speak has been an enormous challenge for him and, at an age when many kids are being scolded for chatting in class, Adam sometimes has problems even recognizing the human voice.

Once regarded with suspicion by his classmates, Adam rarely got invited to birthday parties and during those few occasions that he was asked, he was often found hiding under beds or running away down the street. But life took a positive turn for Adam once he was introduced to the cello. Recently admitted to the Colburn School of Performing Arts, Adam has learned to communicate with others through his music and performs regularly in recitals, where he hams it up and loves to be on stage.

“Now he’s known in school not as the autistic kid, but as a cellist,” says Adam’s mother, Rosanne Walden, who has fought for years to keep him in regular classrooms and is currently suing the L.A. Unified School District to allow children with autism access to gifted-learning programs.

Not just 'quirkiness'
After more than four years of intensive therapy and treatments, Adam has reached the point where most people who meet him would at first just think he's a little eccentric or different. But, as many experts point out, autism is not simply "quirkiness" or an unusual personality trait, but a serious disorder capable of destroying families and children's futures. Like others with the condition, Adam's progress has been hard-won.

His struggles are increasingly shared by many across the United States as rates of autism continue to skyrocket. Some experts estimate that as many as 1 in 166 children born today will be diagnosed with an autistic disorder. Autism is now the second most commonly diagnosed serious developmental disability in children after mental retardation.

While the causes for the dramatic rise in cases over the past decade are the subject of much debate, one thing is certain: early diagnosis is crucial. By being aware of key symptoms to watch for, parents can help spot the disorder and, if necessary, ensure their child begins treatment.

“One of the factors in a good [autism] prognosis is early intervention,” says Dr. Sally Ozonoff, associate professor of psychiatry at the MIND Institute at the University of California, Davis. “It’s been shown pretty clearly that starting an intervention at age 3 is better than 5, or starting intervention at 2 or potentially even earlier than that is better.”

But while most experts agree that beginning treatment for autism at an early age is important, the process of diagnosing children can be fraught with difficulty and makes the goal of early treatment sometimes easier said than done.

'Experts on things'
First identified back in the early '40s, autism was once thought to be the initial stages of schizophrenia. The name derives from the Greek words “autos,” meaning “self,” which describes the often withdrawn and self-focused perspective people with the disorder appear to have.

“There was lots of confusion about what it was,” says Dr. Fred Volkmar, professor of child psychiatry, pediatrics and psychology at Yale University, who co-authored the latest definition of autism and related disorders in the Diagnostic Statistical Manual of Mental Disorders (Fourth Edition).

Decades of research have now made autism the most well-known disorder in a category recognized by the American Psychiatric Association as pervasive developmental disorders. In addition to autism, the category includes Asperger Syndrome, Rett’s Syndrome, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified, a catch-all category for children who clearly have impairments but don’t meet the criteria for any of the other disorders (see box below). In many cases, the differences between the various disorders are often slight and easily confused even by specialists.

Four times more common in males than females, according to the Cure Autism Now Foundation, autism affects people from all socioeconomic and ethnic backgrounds. It involves a wide spectrum of symptoms ranging from mild to severe, but all have three areas in common: communication problems, impaired social relationships, and unusual patterns of behavior.

“Most children come into the world set up to be experts on people,” says Volkmar. “But children with autism don’t have this. They’re set up to be experts on things, their inanimate environment.” Research shows they tend not to look at faces as much and have difficulty reading body language. They can also develop unusual behaviors, such as repeatedly twitching their fingers, rocking, spinning, or rolling their eyes.

Diagnosis of autism spectrum disorders typically takes place around age 3 or 4 when a child has not begun speaking, although many children, such as patients with Asperger Syndrome, do develop language skills. In some instances, a child appeared to be making normal progress in most areas of development, but then began to regress. In other cases, parents were worried about their children long before the diagnosis, but were mistakenly reassured by their pediatricians that there was nothing to be concerned about.

If a parent suspects autism or other developmental delays, it’s important for them to push their doctor for an evaluation with a trained specialist, says the MIND Institute’s Ozonoff. “The fact is most parents are not going to bring this up unless there is a problem. Parents never want their child to have autism, so the only person who would pursue this is someone who’s really concerned.”

And for most parents, the initial diagnosis is devastating. “My first thought was that they’re wrong,” said Sara DiFucci of Albany, N.Y., whose 6-year-old daughter Amanda has mild autism. “The only autism I knew was from the movie 'Rain Man,' and my child was certainly not like that.”

Early warning signs
In order to receive a diagnosis of autism or a related disorder, children must meet a certain number of behavioral criteria as described in the Diagnostic Statistical Manual of Mental Disorders. In general, the criteria are applicable to children around the age of 3 or older, so diagnosis at an earlier age is much more difficult.

But given the importance of early treatment, Ozonoff and her colleagues have begun a study to determine whether there are identifiable symptoms of autism in infancy. So far, the research has shown that there are indeed detectable signs of the disorder in many babies long before they reach the age when it would be easier to spot.

Ozonoff has narrowed the preliminary results of the research down to six key symptoms in infants and toddlers that parents should watch for:

  • Children don’t orient or respond to their names
  • They don’t look at faces or make eye contact as much
  • They don’t show objects to others or point at things
  • They smile at others less
  • They don’t try to imitate others as much
  • They show less interest in other children

Whatever a child's age when the disorder is identified, once a reliable diagnosis has been made, the hardest part is figuring out what to do next. Some children with very high-functioning autism may not need major intervention, but given the serious impairments that usually accompany the disorder, most with an autism-related diagnosis will need long-term treatment.

“A disorder is an impairment, not just quirkiness,” says Volkmar. “We’re talking about things that take over a child’s life. They become a source of anxiety and stress, something that causes major problems.”

As many autism advocates point out, the goal of diagnosis and treatment is not to label or change a person’s fundamental personality, but to help children learn to live better in the world and give them more choices for the future. While autism never goes away, people with the disorder can go on to have meaningful, successful lives.

And, as the number of children with autism grows, society will increasingly have to make adjustments for their different perspectives and needs, researchers say.

“On top of normalizing an autistic child’s development, we have to prepare them to explain themselves to what will hopefully, one day, be a welcoming world,” adds Rosanne Walden.