Autism: Locked in a Solitary World (continued)

autistic child

"We're absolutely headed in the right direction. Right now we can't cure it, but we can make it much better. And this is one puzzle I want to see solved, " says Andrew Levitas, MD.


autistic child

Years ago, children with autism were usually institutionalized and often forgotten. Today we know that autism is treatable, and most clinicians believe it's best to start sooner rather than later. Isabel Carotenuto, MD, director, Division of Child Development at NJMS, is an autism specialist and a consultant at several special education schools in Newark. A former grade school teacher herself, Carotenuto says the first and most widely used approach is behavior modification. The specific undesirable behaviors are targeted and a therapist, teacher and parents all work with the child to change them. It is labor intensive, she says, and requires relentless repetition and consistency. Some symptoms do improve, and the learning, in and of itself, can modify a behavior. Tantrums, for example, may decrease as the child learns to speak, making enrollment in an early intervention program and speech therapy valuable adjunct interventions.

"The addition of medication is helpful in reducing undesirable behaviors in some children," Carotenuto says, "but the efficacy is never 100 percent, and response can change over time."

In the last decade, pharmacological therapy in autism has taken a giant step forward, Carotenuto says. Tranquilizers (neuroleptics), particularly haloperidol, is used to curb dangerous levels of aggression, sleeplessness and self-injurious behavior. Although effective, it can have dangerous side effects. A newer neuroleptic, risperidone, produces fewer side effects and has shown promise in calming negative behaviors. Ritalin is generally used for attention deficit and hyperactivity; however, it is not as effective in autistic kids as it is in the general population. Antidepressants, like Prozac, curb obsessive compulsive disorder; lithium and the anticonvulsants Tegretol and Depakote stabilize mood swings and aggressive behavior; and the latter anticonvulsants also quell seizures. Naltrexone, an opioid antagonist, can be tried for self-injurious behavior.

"It's trial-and-error with these drugs. We have to experiment until we get the right dosages and combinations," she says. "While medications are helpful, they're not a panacea."

And drugs are controversial. Some parents resist using medication, Carotenuto says, since those prescribed in autism are used in the adult psychiatric population, and only a small percentage of them have been tested on children.

Secretin, which recently received wide publicity, is probably the most controversial treatment for autism today. It is a naturally occurring hormone produced by the small intestine when acid goes into the duodenum. Secretin from pigs has been used in gastrointestinal endoscopy for years. When an autistic, 3-year-old Maryland boy had an endoscopy, about three years ago, most of his symptoms disappeared. His parents decided it might have been the secretin. After an arduous search, they found a source of secretin and a physician to administer it. The child is still receiving it and continues to thrive.

Word went out over the Net, and other parents jumped on the bandwagon for what they hoped would prove a miracle drug. But the demand is high and the supply short, clinical trials have not been done nor have proper dosages been determined, and only a few physicians are willing to give secretin. And the results are not notable: anecdotal reports say only about 50 percent of the kids who received it have shown improvement. A major pharmaceutical company may begin manufacturing secretin soon, and research continues.

There is other research being conducted as well. One new therapy is based on the unproven theory that autism is caused by a disturbance to the auditory system. Audiograms have shown that some individuals have hyperacute sensitivity to certain sound frequencies. The therapy involves a series of sessions during which the person listens to music via earphones with specific frequencies filtered out. Although there has been no formal research on this therapy, and the American Academy of Pediatrics has not approved it, there are anecdotes of improvement in a wide range of symptoms, including language and behavior.

Other researchers, including Mars, are investigating ways to diagnose the disorder as early as possible. She completed a study of home videos of autistic children, from 12- to 30-months-old, before they were diagnosed, and a control group.The goal was to spot abnormalities in social and communicative behaviors, so that in the future, earlier diagnosis can take place. The study, published in The Journal of Pediatrics, revealed children later diagnosed with autism could be differentiated from their typically developing peers.

High-tech engineering is helping people with autism to communicate. Augmentative communication is an approach used in children who are nonverbal or have limited and/or unintelligible speech. It employs a variety of computers and "talking boards." Another system, known as picture exchange or Pecs, utilizes a book of pictures. The child learns the meaning of each image, then hands the appropriate one to his teacher or caregiver when he wants to convey a message. A mother once described autism as a void. "I never know what my son is thinking or feeling," she said. "If only I could get in, or he could get out."

Will these autistic children ever "get out?" "We're absolutely headed in the right direction," says Levitas. "Right now we can't cure it, but we can make it much better. And this is one puzzle I want to see solved."


UMDNJ Takes Lead in New Autism Center

On May 11, Gov. Christine Todd Whitman signed into law the "New Jersey Autism Biomedical Research Act," which establishes a seven-member Governor's Council on Infantile Autism in UMDNJ. The Council will award grants and contracts to public and nonprofit private entities to support establishing and operating a Center of Excellence for Autism in the state, which will be dedicated to basic and applied biomedical research, diagnosis and treatment. UMDNJ President Stuart D. Cook, MD, will serve as president of the Council.


Spring/Summer 1999 Table of Contents
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