Before autism appears
Can autism be prevented? It sounds like a very long shot. But that is the focus of innovative research at the University of Washington that will use behavioral techniques with infants genetically at risk for the condition to try to stave off the symptoms of this baffling neurological disorder.
If the approach proves beneficial, it could save thousands of children from a life of social isolation and permanent disability.
“This is a very exciting and potentially revolutionary study because it is the first to focus on infants,” says Alice Kau, an autism expert at the National Institute of Child Health and Human Development in Bethesda, Md. “Diagnosis and intervention at such a young age could prevent the development of full-blown autism.”
Once an exceedingly rare diagnosis, autism is thought now to afflict 1 in 150 newborns, more than Down’s syndrome or childhood cancers, and the steep rise in these numbers has lent urgency to the search for better ways to reverse or even halt the development of the disorder. Experts don’t know what causes autism, but they do know that it runs in families. When infants have an autistic older brother or sister, the odds that they will develop the disorder are five to 10 times higher than in the general population.
The federally funded $11-million study, which enrolled its first patients last week and is expected to last four years, will eventually involve 200 Seattle-area infants 6 months or younger upon enrollment, each of whom has an older sibling diagnosed with autism.
Half of the babies will be monitored by specialists and referred for community treatment. Mothers and infants in the other group will participate once a week for 12 weeks in social interaction workshops that promote the formation of emotional bonds. All the children will be evaluated at 12 months.
Next, those infants in the treatment group will undergo an intensive intervention program called applied behavior analysis (see box), and parents will be taught how to encourage play and communication. At 24 months, the children will be assessed again.
Although the researchers cannot know which of the 200 babies would have gone on to receive a diagnosis of autism, they can see whether the number was reduced from the expected autism rate in children with autistic siblings, which is 1 in 20.
In children with autism, a glitch in the brain’s circuitry seems to cause a profound disconnect, interfering with the natural acquisition of language and social skills that most of us learn instinctively. Scientists speculate that “too many neural connections develop and they’re not connecting to the right places,” says Dr. Nancy J. Minshew, director of the Center for Excellence in Autism Research at the University of Pittsburgh.
Autistic traits can be bewilderingly diverse and include rigid, repetitive rituals, bizarre fixations, temper tantrums and an inability to concentrate, communicate intelligibly, form emotional bonds, read social cues or even make eye contact.
Some children with autism can be high functioning with normal or above-average IQs and are able to blend in, while others have some mental retardation, struggle with spoken language and are socially withdrawn.
But strides in treatment have been made. Growing evidence suggests that intensive behavioral therapy of the kind to be used in the University of Washington study can improve the chances that a child with autism will develop normally or be less severely affected.
The belief is that like stroke victims, children can learn compensatory strategies to help them overcome their deficits and form new brain pathways. These behavioral techniques maximize social engagement, says Dr. Stephen Dager, an autism researcher and psychiatrist at the University of Washington in Seattle who is not involved in the current study. “The more you can encourage that in a child, the more they will have an incentive to develop language as a tool of social interaction,” he says.
The earlier the intervention occurs -- usually before the age of 3 -- the better the outcome, Dager adds. “These are critical developmental windows for laying down patterns of social interaction and language,” he says. “If they miss these milestones, it’s a lot harder to catch up.”
The hope of the University of Washington study is that these same therapeutic approaches that work to ameliorate autism in older children may, in the younger, high-risk siblings, prevent autistic symptoms altogether by intervening while the youngsters’ neural circuitry is still forming.
But even if the study falls short of that dream, researchers expect to learn much from it. Because autism can’t be reliably identified until about age 2, the scientists hope to uncover subtle clues that would help them spot kids with autism earlier, before obvious symptoms emerge.
“That way, in the future, we’ll know better who needs to start early interventions,” says Annette Estes, associate director of the University of Washington Autism Center and one of the study investigators. “Right now, the only thing we can tell parents of at-risk infants to do is wait, watch -- and worry. We’d like to do better than that.”
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Taking it step by step
In their study of babies at risk for developing autism, University of Washington researchers are using an intensive behavior modification therapy known as applied behavior analysis, originally developed at UCLA. Research has shown that in older children this technique can improve autism’s core deficits, such as social ineptness, repetitive behaviors and difficulties in acquiring language skills.
This highly structured approach breaks down tasks into small individual components; for example, a person learning to brush teeth independently may start with learning to unscrew the toothpaste cap. Once he or she has learned this, the next step may be squeezing the tube. Whenever a child successfully completes each step, such as learning words, sitting still or smiling when someone walks into a room, he or she is rewarded.
“Normal children learn words and what things mean almost magically,” says Dr. Nancy J. Minshew, director of the Center for Excellence in Autism Research at the University of Pittsburgh. “But for children with autism, it’s like mass confusion for them, so you have to make it very clear and really push to get them to see that there is a connection.”
You can learn more about the therapy at the website for the L.A.-based Institute for Applied Behavior Analysis, www.iaba.com.
-- Linda Marsa
