Autism: Kids Put At Risk

James Coman’s son has an unusual skill. The 7-year-old, his father says, can swallow six pills at once.

Diagnosed with autism as a toddler, he had been placed on an intense regimen of supplements and medications aimed at treating the disorder. He was injected with vitamin B12 and received intravenous infusions of a drug used to leach mercury and other metals from the body. He took megadoses of vitamin C, a hormone and a drug that suppresses testosterone.

This complex regimen — documented in court records as part of a bitter custody battle over the Chicago boy between Coman, who opposes the therapies, and his wife — may sound unusual, but it isn’t.

Thousands of U.S. children undergo these therapies and more at the urging of physicians who say they can successfully treat, or “recover,” children with autism, a disorder most doctors and scientists say they cannot yet explain or cure.

After reviewing thousands of pages of court documents and scientific studies and interviewing top researchers in the field, an investigation by the Chicago Tribune found that many of these treatments amount to uncontrolled experiments on vulnerable children.

The therapies often go beyond harmless New Age folly, the investigation found. Many are unproven and risky, based on flawed, preliminary or misconstrued scientific research.

Lab tests used to justify therapies are often misleading and misinterpreted. And though some parents fervently believe their children have benefited, the investigation found a trail of disappointing results from the few clinical trials conducted to evaluate the treatments objectively.

Studies show that up to three-quarters of families with children with autism try alternative treatments. Doctors, many linked to the influential group Defeat Autism Now, promote the therapies online, in books and at conferences.

The investigation found children undergoing day-long infusions of a blood product that carries the risk of kidney failure and anaphylactic shock. Researchers in the field emphatically warn that the therapy should not be used to treat autism.

Children are repeatedly encased in pressurized oxygen chambers normally used after scuba diving accidents. This unproven therapy is meant to reduce inflammation that experts say is little understood and may even be beneficial.

Children undergo rounds of chelation therapy to leach heavy metals from the body, though most toxicologists say the test commonly used to measure the metals is meaningless and the treatment potentially harmful.

Last year, the National Institutes of Health halted a controversial government-funded study of chelation before a single child with autism was treated. Researchers at Cornell University and UC Santa Cruz had found that rats without lead poisoning showed signs of cognitive damage after being treated with a chelator.

Doctors associated with the autism recovery movement often say they know that more research is needed but that children need help now.

“We can’t wait for 10 or 20 years,” pediatrician Dr. Elizabeth Mumper, medical coordinator for the Autism Research Institute (the nonprofit parent organization of Defeat Autism Now), testified in a special federal court.

Many parents who try alternative therapies cite an analogy popularized by a luminary of the movement: It’s as if their child has jumped off a pier. Science hasn’t proved that throwing a life preserver will save the child, but they have a duty to try, right?

Critics say that’s the wrong way to think about it.

“How do they know the life preserver is made of cork and not lead?” said Richard Mailman, a neuropharmacologist at Penn State University. “However desperate you are, you don’t want to throw your child a lead life preserver.”

“Dangerous experimentation” is how pediatrician Dr. Steven Goodman, a clinical trial expert at the Johns Hopkins Berman Institute of Bioethics, describes use of these unproven therapies.

One in 100 U.S. children is diagnosed with autism spectrum disorder by age 8, according to the U.S. Centers for Disease Control and Prevention. Though behavioral therapies can help, there are no cures for the disorder, which is characterized by communication problems, difficulties interacting socially and rigid, repetitive behavior.

But clinicians and others in the recovery movement readily offer treatments and hope.

The Symptoms of Autism

The current Diagnosis and Statistical Manual of Mental Disorders-Fourth Edition, Treatment Revision (DSM-IV-TR) identifies three features that are associated with autism:

  • impairment in social interaction,
  • communication, and
  • Behavior.

Impairment in social interaction

First, patients with autism fail to develop normal personal interactions in virtually every setting. This means that affected persons fail to form the normal social contacts that are such an important part of human development. This impairment may be so severe that it even affects the bonding between a mother and an infant. It is important to note that, contrary to popular belief, many, if not most, autistic persons are capable of showing affection and do demonstrate affection and do bond with their mothers or other caregivers. However, the ways in which autistic individuals demonstrate affection and bonding may differ greatly from the ways in which others do so. Their limited socialization may erroneously lead parents and pediatricians away from considering the diagnosis of autism. As the child develops, interaction with others continues to be abnormal. Affected behaviors can include eye contact, facial expressions, and body postures. There is usually an inability to develop normal peer and sibling relationships and the child often seems isolated. There may be little or no joy or interest in normal age-appropriate activities. Affected children or adults do not seek out peers for play or other social interactions. In severe cases, they may not even be aware of the presence of other individuals.

Communication

Communication is usually severely impaired in autistic persons. What the individual understands (receptive language) as well as what is actually spoken by the individual (expressive language) is significantly delayed or nonexistent. Deficits in language comprehension include the inability to understand simple directions, questions, or commands. There may be an absence of dramatic or pretend play and these children may not be able to engage in simple age-appropriate childhood games such as Simon Says or Hide-and-Go-Seek. Adults may continue to engage in playing with games that are for young children.

Autistic individuals who do speak may be unable to initiate or participate in a two-way conversation (reciprocal). Frequently the way in which an autistic person speaks is perceived as unusual. Their speech may seem to lack the normal emotion and sound flat or monotonous. The sentences are often very immature: “want water” instead of “I want some water please.” Those with autism often repeat words or phrases that are spoken to them. For example, you might say “look at the airplane!” and the child or adult may respond “at airplane,” without any knowledge of what was said. This repetition is known as echolalia. Memorization and recitation of songs, stories, commercials, or even entire scripts is not uncommon. While many feel this is a sign of intelligence, the autistic person usually does not appear to understand any of the content in his or her speech.

Autistic persons often exhibit a variety of repetitive, abnormal behaviors. There may also be a hypersensitivity to sensory input through vision, hearing, or touch (tactile). As a result, there may be an extreme intolerance to loud noises or crowds, visual stimulation, or things that are felt. Birthday parties and other celebrations can be disastrous for some of these individuals. Tags on clothing may be perceived as painful. Sticky fingers, playing with modeling clay, eating birthday cake or other foods, or walking barefoot across the grass can be unbearable. On the other hand, there may be an underdeveloped (hyposensitivity) response to the same type of stimulation. This individual may use abnormal means to experience visual, auditory, or tactile (touch) input. This person may head bang, scratch until blood is drawn, scream instead of speaking in a normal tone, or bring everything into close visual range. He or she might also touch an object, image or other people thoroughly just to experience the sensory input.

Autistic children and adults are often tied to routine and many everyday tasks may be ritualistic. Something as simple as a bath may only be accomplished after the precise amount of water is in the tub, the temperature is exact, the same soap is in its assigned spot and even the same towel is in the same place. Any break in the routine can provoke a severe reaction in the individual and place a tremendous strain on the adult trying to work with them.

There may also be non-purposeful repetition of actions or behaviors. Persistent rocking, teeth grinding, hair or finger twirling, hand flapping and walking on tiptoe are not uncommon. Frequently, there is a preoccupation with a very limited interest or a specific plaything. A child or adult may continually play with only one type of toy. The child may line up all the dolls or cars and the adult line up their clothes or toiletries, for example, and repeatedly and systematically perform the same action on each one. Any attempt to disrupt the person may result in extreme reactions on the part of the autistic individual, including tantrums or direct physical attack. Objects that spin, open and close, or perform some other action can hold an extreme fascination. If left alone, an autistic person may sit for hours turning off and on a light switch, twirling a spinning toy, or stacking nesting objects. Some individuals can also have an inappropriate bonding to specific objects and become hysterical without that piece of string, paper clip, or wad of paper.