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Understanding Autism

Autism seems to be everywhere these days  -- in newspapers, on TV, even on bumper stickers. The rate is skyrocketing, reports say. We all seem to know of at least one child "on the spectrum."

And since the latest buzz suggests that early intervention is critical for successful treatment, parents of ever younger children are searching for signs. Would your pediatrician recognize them? Would you? The hype is worrisome, but the truth behind it should ease some concerns. The facts:

What is autism?

Autism was first described and named in 1943 and was said to comprise three common characteristics:

* Autistic children prefer to relate to objects over people.

* They're obsessed with maintaining routines and sameness in their lives.

* They tend to seek complete aloneness, shutting out the world around them.

While the disorder has always been said to represent a "spectrum," or range, of problems, today more children than in the past whose symptoms show both more  -- and less  -- severity are included. For instance, kids with Asperger syndrome, which refers to high intelligence without language deficits but with social impairments, are placed on the spectrum, as are those whose symptoms are so severe that a generation ago they often would have been termed mentally retarded.

No one disputes that the number of children diagnosed with an autistic spectrum disorder (ASD) has gone way up compared with statistics from 30 years ago. But as widespread as ASD appears to be  -- affecting as many as 1 in every 150 children, according to the Centers for Disease Control and Prevention  -- experts agree that it cannot be called an "epidemic."

The fact is, it's impossible to compare how common autism is today with 10 or 20 years ago. Not only are doctors better at spotting ASD, so the diagnosis is more frequent, but many experts say that doctors' interpretation of the spectrum has become so inclusive that a diagnosis of autism is no diagnosis at all. "The use of the term has expanded to the point where children referred to me as autistic lack the social deficit, which is the core symptom," says Susan Swedo, M.D., a pediatrician and the principal investigator in the National Institute of Mental Health's Intramural Research Program on autism. "We're muddying the waters."

There is a lot of over-diagnosing, agrees Joe Piven, M.D., a psychiatrist at the University of North Carolina in Chapel Hill, who directs the UNC Neurodevelopmental Disorders Research Center. Many children don't necessarily have autism, but they have "almost-autism," he says  -- symptoms that interfere with their ability to function. And although a few repetitive behaviors or social oddities don't make a child autistic, they may get him a diagnosis.

Not everyone concurs. "In many areas of the country, there is still a problem with under-diagnosis," says Nancy Minshew, M.D., a professor of psychiatry and neurology at the University of Pittsburgh's School of Medicine. There is also growing concern that minority children are diagnosed at a rate far below that of Caucasian kids, and at later ages.

Experts do agree, however, that there is no one thing called autism, but that there are autisms  -- the broad categories of "regressive" (in which a child developing normally starts to regress into autism) and "non-regressive" types (with problems apparent from infancy), as well as subtypes within these categories. To help clear up the controversy, the National Institute of Mental Health launched a vast study last September to identify variants and refine the way doctors make diagnoses. So as prevalent as autism is today, in a few years we may see ASD diagnoses spike even higher.

Melinda Marshall is a frequent contributor to Parenting.

Diagnosis and treatment

How can you know  -- and how early can you find out  -- if your child falls anywhere on the broad spectrum?

Parents who've noted that their 14-month-old doesn't babble or point, is losing skills, or isn't talking by 18 months should talk to their pediatrician and get a developmental screening. If it indicates a possible problem, you should be referred to a specialist who can evaluate your child further using tools such as the Autism Diagnostic Observation Schedule (ADOS), a workup done by observing and interacting with the child.

That said, getting a qualified medical diagnosis for an infant or a toddler is not the straightforward process it should be. There's "tremendous variability" in the skill that public agencies and private practices bring to the screening process, says Fred Volkmar, M.D., chairman of the Department of Child Study at Yale University. "We've put a lot of money into research but not enough into translating that research into medical practice."

And a sound diagnosis is only the beginning. Treatment is the next step, and there are no fewer than ten types of interventions offered nationwide that work to some degree, says Dr. Volkmar. But usually only one type is available in any one area. Making a choice (if there is one) between or among approaches is not easy on the parent, either, because there aren't clear standards to go by.

But using the wrong intervention for a child with ASD can squander a precious window of opportunity, says Susan Wilczynski, Ph.D., executive director of the nonprofit National Autism Center (NAC), in Randolph, MA. "Learning is lifelong," she says, "but many kids who receive intensive intervention early, in their first five years, do better than those who receive it later." Establishing treatment standards so parents can choose effective programs is the mission of the newly organized NAC. Meanwhile, Wilczynski urges parents to choose approaches backed up by evidence that they work, such as those in Educating Children With Autism, a book that can be read for free online .

Life behind the labels

The journey from diagnosis to treatment is not one for the faint of heart, as Karen Enfield, a mother of two in San Jose, CA, can attest. Last July her son, Asher, was diagnosed as autistic at age 2.

Like many parents, Enfield could tell almost from the moment Asher was born that he was not like other infants. "He seemed to have an amazing gift to be at peace," she says, recalling how he never cried for her to come pick him up.

At about 18 months, however, she saw Asher's behavior differently. Her toe-walking little charmer did not communicate. He didn't say "Mama" or "Dada" or point to things he wanted. At the playground, he had no interest in other children; he didn't even seem to register their existence, preferring instead to roll anything with wheels back and forth obsessively. Enfield had to teach him how to put his arms around her for a hug.

At his 24-month checkup, Enfield asked the doctor if Asher could be autistic. "Lots of kids aren't talking yet at two years," the pediatrician assured her.

But she wasn't reassured because Asher hadn't met other milestones appropriate for 2-year-olds, such as kicking a ball, jumping, and pointing at things. A local preschool for autistic children steered her to Lucile Packard Children's Hospital at Stanford, which concluded that Asher was autistic, but not severely so.

"I felt crazy up until then because people would tell me there was nothing wrong with him," she says. "When they came back and said he qualified as autistic, I was almost happy because I knew he'd get help."

Today Asher is enrolled at a special preschool, where he gets extensive "floortime" therapy, an intervention based on the theory that getting down on the floor and intensively engaging in the child's play has the best chance of fostering social communication.

Asher also receives speech and occupational therapy, which, like his tuition, is paid for by the county. And Enfield perceives real improvement: Asher notices now when she leaves and when she comes back, and has even said "Hi, Mom!"  -- his first-ever unprompted words to her.

Still, Enfield's son's diagnosis puts a strain on her. "Some days I can't move," she says. "I feel exhausted and worry I may not have devoted enough time to him that week. But I remind myself that he's got a lot of strengths and is making a lot of progress."

That progress involves the whole family. Even Maeven, Asher's 5-year-old sister, helps with giving Asher one-on-one attention and eye contact. And Enfield devotes her days to shuttling him between appointments or continuing the floortime therapy he receives at school, trying to create a safe and predictable environment so Asher won't shut down and disconnect.

The good news

Millions of dollars have been spent to determine what autism is, what causes it, and how we might prevent or cure it. And that's all to the good. We're on the brink of learning which genes predispose a child to autism and what might trigger its onset.

While a cure is not yet in sight, we've begun to figure out what works for some children, in terms of intervention between the ages of 12 months and 5 years.

"I do think, on balance, kids are doing better," says Dr. Volkmar. "Twenty-five years ago, when I did my first follow-up on adults I'd diagnosed as kids  -- kids who never had any intervention  -- only about two percent could live alone, hold a job. But since we started mandating education and services, we're seeing more independent kids. I'd say that two percent has become more like twenty."

In other words, we're doing ten times better than we were a generation ago. That's the "growing number" we should be aware of. And that's the evidence we should start seeing everywhere.