Since the 1990s, there’s been a dramatic increase in autism (search) among school-age children. The data are from the U.S. Department of Education, and the report hints that the increases seen with time are real.

Research has suggested that the rise in autism could be largely explained by changes in diagnosis, with children who might have been classified as mentally retarded or speech impaired before the 1990s now being classified as autistic. Lead researcher Craig J. Newschaffer, PhD, says the Department of Education figures do not show this, but he adds that the increase in autism may never be fully understood.

“I don’t know if we are ever going to be in a position to explain what has gone on over the last decade,” he says. “The hope is that with the surveillance programs that are now in place we will be in a better position to understand future trends.” Earlier findings from the CDC and others have suggested as much as a tenfold increase in autism and related disorders during the last decade of the 20th century.

The study does not answer the question as to why autism is increasing. But the national data don’t show a decrease in other learning disabilities. Trends for mental retardation (search) and speech and language impairment remained unchanged. This suggests the increase in autism is not the result of an across-the-board increase in special education classification, say the researchers.

Trend May Be Leveling Off
Newschaffer and colleagues from an autism tracking center at the Johns Hopkins Bloomberg School of Public Health analyzed national special education data collected from 1992 to 2001. The findings are reported in the March issue of the journal Pediatrics. The research offers intriguing early evidence that the upward trend in autism cases may be beginning to level off. But Newschaffer cautions that the finding may be misleading.

He says a change in 1997 that allowed children up to the age of 9 to be classified as “developmentally delayed” may explain the apparent leveling of autism cases. Before 1997 the diagnosis was used only for children 5 and under. It is possible, Newschaffer explains, that children with this label who would have been reclassified as autistic after age 5 are now being diagnosed when they are older.

“We will need a few more years of data to determine if the rise in autism is really leveling off,” he says.

Early Diagnosis Is Key
The most recent figures indicate that as many as one in 166 children in the U.S. is autistic or has an autism-related disorder, such as Asperger syndrome. Despite a growing awareness of the importance of early diagnosis, the new report suggests that many children are still being diagnosed at older ages.

Last month, the CDC launched a major public health initiative to promote early diagnosis by raising awareness about child development milestones. “By recognizing the signs of developmental disabilities early, parents can seek effective treatments which can dramatically improve their child’s future,” CDC Director Julie Gerberding, MD, says in a news release.

The focus of the campaign is to get parents to keep track of important developmental milestones such as when their child learns to smile, when they recognize the word “no,” when they learn to speak and play, and how they interact with others. Pediatrician and epidemiologist Marshalyn Yeargin-Allsopp, MD, says the hope is that parents will learn to identify developmental delays as early as possible. Yeargin-Allsopp is conducting an ongoing study of autism prevalence trends for the CDC.

“Parents need to know the signs and bring those signs to the attention of their health care provider,” she says. “After all, parents know their children better than anyone. And providers can’t take a ‘wait-and-see’ attitude. They have to refer a child quickly for diagnostic assessment even if they just suspect a developmental delay so that a child can get intervention services as early as possible, if necessary.”

“The Joker has stolen the world’s biggest diamond, and it’s up to Batman and Robin to get it back. On a video monitor, hands move toy action figures through the paces of the story, as an off-camera voice speaks the dialogue.”

John, age 6, watches the monitor with rapt attention. He is autistic, and this is a technique called “video modeling,” used by educators at the New England Center for Children (NECC) in Southborough, Mass., where John and some 200 other autistic kids attend school.

When the video ends, Jen, his teacher, affectionately ruffles his hair and directs him to a table that holds the same Batman toys seen in the video. He is supposed to play with them in exactly the same way, saying the same lines, as he has just been shown.

Normally developing children play by imagining scenarios and acting them out with toys. Kids with autism do not. They have to be taught how to play this way. The goal is for them to understand the concept well enough to expand on their play, using their own imaginations.

Learning New Behaviors, Changing Harmful Ones

Teaching play with video modeling is something new that the NECC is studying. On the staff working with the kids are not only educators, but also researchers, and they report on what happens at the NECC to the scientific community. Video modeling is just one small part of the NECC’s whole approach, called “applied behavioral analysis,” widely regarded as the gold standard in autism treatment.

In the simplest terms, applied behavior analysis offers carrots, with no stick. Children are engaged in learning new behaviors and helped to change disruptive or harmful ones, by constant positive reinforcement. The curriculum at the NECC ranges from the most basic language and social skills to academics and vocational training. “We plug them into that wherever they’re at,” says Rebecca MacDonald, PhD, director of the preschool program, which includes kids aged 3 to 7.

Another new area she is studying is what’s called “joint attention,” an important early step in relating to others. If you were to turn and look at something, a typical child observing you would probably turn to look at it, too. An autistic child would not notice. “It’s one of the hallmarks of autism,” MacDonald tells WebMD. “They tend not to care what you are looking at or thinking.”

To encourage them to care, she will make something interesting or rewarding happen if the child follows her gaze. For example, she’ll activate an electronic toy by remote control if the child looks at it when she does. Improving joint attention behavior won’t make all other social skills fall easily into place. Like video modeling, it’s just one tool used in the intensive work that the NECC does. Kids who attend the school go for 30 hours a week, all year long.

Starting Early
The earlier this kind of work can begin, the better the outcomes tend to be for autistic children. Autism can usually be diagnosed by 18 months of age, but some scientists hope that in the future, a blood test at birth might detect it.

In May 2005, researchers at the University of California, Davis MIND Institute announced that they had found remarkable differences in blood tests of autistic and nonautistic children. The children had different levels of certain proteins in the blood and more of some kinds of immune cells.

“The idea for early detection is not only that you can intervene early, which is beneficial, but there’s the notion that not all children who ultimately have autism are doomed to it at birth,” David Amaral, PhD, research director at the MIND Institute, tells WebMD.

Scientists have speculated that maybe something in the environment makes children who are susceptible to autism develop the disorder. If researchers could identify the trigger, avoiding it might prevent autism.

“In some cases the information might allow full-blown prevention, and in other cases more tailored treatment,” MIND Institute researcher Blythe Corbett, PhD, tells WebMD.

It’s too early, however, to say for sure what the differences seen in the study mean. “We don’t know whether our findings indicate a cause or an effect,” Amaral says.

It may be that the immune system plays a role in some children’s autism, but “there simply is not going to be a single cause,” he says. “In fact, we think of autism not as autism, but as autisms.”

What’s more, the differences may not be specific to autistic children. “You have to show, for example, that it differentiates kids with autism from kids with obsessive-compulsive disorder or attention deficit disorder,” says Eric Hollander, MD, director of the Seaver and New York Autism Center of Excellence at the Mount Sinai School of Medicine in New York City.

Hollander’s own research has shown that a particular trait in the immune systems of autistic kids relates to the severity of repetitive behaviors, a common autism symptom. This same trait has been linked to Tourette’s syndrome and obsessive-compulsive disorder.

Emerging Treatments
Recently, Hollander studied the use of Prozac for treating repetitive behavior in children with autism. Those who took low doses of the drug in liquid form showed better improvement than those who took a placebo. But selective serotonin reuptake inhibitors (SSRIs) like Prozac are not stand-alone treatments for autism.

  • “The treatment of choice for most individuals is an integrated approach,” Hollander tells WebMD.

At the University of California San Francisco, professor Michael Merzenich, PhD, is working on a computer program to teach language skills to autistic kids through what is called “neural retraining.” It may sound like science fiction, but it’s not all that speculative.

Scientists have come to understand that the brain is not hardwired, but very flexible, or plastic. There are software programs, such as one called Fast ForWord, that can train the brains of kids with impaired language ability to process speech better.

  • “We have very strong documentation that this kind of brain-plasticity-based training can have an effect,” Merzenich tells WebMD.

But programs that exist now are too complex for many autistic kids to use. “The ways that these programs have been designed for nonautistic children just don’t apply to most autistic children,” Merzenich says.

Once Merzenich and his team finish building their program, they will have to put it through years of rigorous testing, which he says they hope to begin later in 2005.

Although its methods are state of the art, the New England Center for Children prides itself on only applying treatment that is backed up by solid research.

  • “People are faced with a raft of alternative treatments that have no merit,” Vincent Strully Jr., the NECC’s founder and executive director, tells WebMD. He counts special diets, secretin treatment, and mercury detoxification among those.
  • “We’re not claiming any cure,” he says, but the center’s approach makes a difference. “It’s advancing the lives of these kids dramatically.”