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Features May 2004: Volume 1, Number 2
   

Autism, The Epidemic
by Christopher Vaughan

 
     

Every parent runs mental videos of a thousand nightmare scenarios, a nagging little catalogue of all the mishaps they know or have read about. For every moment of joy and discovery, there is at least one of panic or dread: a flu-like fever spiking, a kindergartner who has slipped away in a crowd.

Parents are prone to think of sudden disasters, not of something that creeps into the nursery as quietly as a cat, leaving their child physically intact but slowly stealing away warmth, affection, interaction, a normal future. For an ever-increasing number of parents every year, autism becomes the unexpected nightmare.

Autism has long been a mysterious malady, but now there is an epidemic of autism sweeping the country. Where 20 years ago, autism was diagnosed in only one in every 10,000 children, the National Institutes of Health now estimate that autism will affect one in 166 children. This is fueling emotional battles over the causes of the disorder and it is creating an urgent need for answers.

Ever-increasing public awareness and a spate of new research findings provide glimmers of hope that we can understand the disease and start dismantling the walls that isolate autistic children. UCSD researchers have been at the forefront of that movement, finding significant clues that may help us understand the disorder’s causes and cures.
Autism defies simple categorization. It is part of a larger diagnostic category, autistic spectrum disorders, which describes people with a broad range of abilities and disabilities. People with autism can be so slightly affected that they seem just a little “off,” or so impaired that they can barely function. What all cases of autism have in common, though, is that they strike the young, and are usually diagnosed when children are between 2 and 4 years old.
At first, the children can be as fussy, funny, smiling, crying and bewildered as any infant. But as they near their first birthday, things seem not quite right. They may not make eye contact or point. They often don’t learn to speak or may learn a few words and then slowly lose them. They are increasingly lost in their own world, not interacting, not talking. By age 2 or 3, the differences between autistic and non-autistic children are distinct. They may hum, rock, or become obsessed with certain objects or toys and can become easily angered or violent when frustrated or in an unfamiliar environment.

For decades, autistic children and their parents were the target of some of psychiatry’s crueler ironies. Autism was discovered in 1943 by a Johns Hopkins psychiatrist named Leo Kanner, who postulated that these children were drawn into themselves because of the way their parents reared them.

A complete lack of evidence tying autism to parenting flaws did not stop famed psychiatrist Bruno Bettelheim, 10 years later, from zeroing in on the exact source of autistic dysfunction: the female half of the parent duo. Specifically, he said that autism was caused by “refrigerator mothers” who withheld affection from their children. Bettelheim is now known to have fabricated a lot of his data to support the conclusions he had already reached.

We now know that autism is a genetically influenced developmental disorder that is entirely biological, and is not caused in any way by the child’s upbringing. At the time, though, this was an authoritative and devastating indictment, one that caused serious harm.

Most psychiatrists and pediatricians advised parents, without any evidence, that their autistic children would never get better, would never be able to love them, would ruin their lives. The best thing, they often said, was to find a reputable mental institution and leave their child there.

***

From her office high up in the fortress-like McGill Hall, psychology professor Laura Schreibman, Ph.D., has a long view of the changes over the three decades that she has been studying autism at UCSD. “Thirty years ago, I could talk to a group of pediatricians about autism and no one in the room knew what I was talking about,” Schreibman says. “Now when I talk to pediatricians, nearly every one has a patient who is autistic or knows someone who is.”

She also remembers that parents were still abandoning autistic children in the ’70s. “It was so strange when I used to go out to Ventura Hospital and there were all these children there—3, 4, 5 years old,” Schreibman says. “And they were going to be there forever.”

The idea that parental behavior was at least partly responsible for autism died hard. Schreibman recalls an incident in the 1980s, when she let a reporter interview the parent of one of her autistic patients. She left the room for a moment and was horrified to return in time to hear the reporter ask the parent “if she felt guilty” for causing her daughter’s condition.

In the 1960s, however, some psychologists started using behavioral therapies in an attempt to reach out to autistic children and teach them how to communicate. At UCLA, Ivar Lovaas invented a system called discrete trial training, in which therapists who worked intensively with autistic children for long hours, focused on only a few tasks and rewarded good behavior or speech. They found that they could eventually teach children who seemed to have zero language skills to speak a collection of words and to express desires. “A child who wanted to roll a toy car might say ‘car’ or ‘roll,’ and the therapist would say ‘good talking!’ and give him a piece of candy,” Schreibman says.

Over the years, the original behavioral therapy was modified in various ways to be more flexible and appropriate. For example, “instead of giving candy for saying ‘car’ or ‘roll’ we would let the child actually roll the car, because that is the reward they really wanted,” Schreibman says.

The good news was that behavioral therapy was the one treatment that could ameliorate autism. The bad news was that it most often didn’t help. In 60 to 70 percent of cases, the therapy will fail.

“ There’s a lot of variability in autistic children,” Schreibman says, and consequently she has done a lot of research individualizing treatments. In a recent study, Schreibman and her colleague Michelle Sherer, Ph.D. ’02, videotaped young autistic children and scored their behavior in a number of different areas. “For instance, we looked at how interactive they are with others, how much they played with toys, how much rocking they did,” Schreibman says. Then they worked with the children using one type of behavioral therapy called pivotal response training. As the therapy progressed, it became obvious that the children who responded best to the treatment had shared a common behavioral profile. When it became clear that some children were not improving, those children were withdrawn from the trial and given an alternate form of therapy.

With a National Institutes of Health grant that she shares with Robert and Lynn Koegel at UC Santa Barbara, Schreibman is extending her research to look at the relative value of other types of therapy, and says the ultimate goal is to match the children to the therapies that can most benefit them.

“ Early intervention is extremely important for getting the best outcome,” Schreibman says. “You only get one shot in doing that early intervention and helping these children, so you want to make sure you are using the right treatment.”
But Schreibman adds a caveat: she describes what she is doing as a short-term intervention and explains that children can make much more progress with long-term intervention. And, she explains, there is no such thing as a cure at this time. PAGE2

Christopher Vaughan has written numerous books and articles on medical topics. He lives in the Bay Area.

 

RELATED LINKS

UCSD Brain Development Study
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UCSD Psychology
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UCSD Autism Research Study
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National Alliance for Autism Research
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Children's Hospital Autism Intervention
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TeachTown
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"The autistic brain may be like a garden that turns into a jungle, because the plants and weeds grow too quickly for the gardener to keep up."