Autism is a relatively rare pervasive developmental disorder marked by severe deficits in the abilities to reason, communicate, and socialize. Roughly 7 to 13 out of every 10,000 Americans are autistic, and the prevalence of autism among males is 3-4 times that among females.
Several realities make autism a magnet for pseudoscience and quackery:
* Neither what causes autism nor what can cure it has been determined (though recent advances have pointed to possible causal factors, and certain behavioral and pharmacologic treatments have proved somewhat helpful for many autistic persons).
* While most other disabilities affect only certain domains of the disabled individual (i.e., certain areas of activity), autism impacts most or all domains—and autistic individuals typically are first diagnosed with the disorder during their preschool years. Learn-ing the diagnosis and what being autistic entails can devastate an autistic child's parents. Thus, such parents typically are highly, often indiscriminately or desperately, motivated to seek treatment for the condition.
* Physicians and psychologists generally accept the description of autism as a range of disorders. Moreover, the course of autism can vary considerably between cases. For these reasons, the re-sponse to a specific treatment for the disorder is highly variable. For example, a psychotropic* medicine that reduces certain autistic symptoms in an individual may exacerbate the same symptoms in another individual.
* Occasionally, autistic symptoms in a particular domain diminish for no apparent reason. A method utterly ineffective for the disorder may seem effective if such diminishment shortly follows the treatment.
Pseudoscientific Treatments
* based on unlikely theories that are nonfalsifiable (i.e., that cannot be disproved);
* advocated with extravagant claims of efficacy and with evidence that is largely or entirely anecdotal; and
* publicized through proprietary periodicals, trade books, talk shows, and/or websites instead of through refereed scientific journals.
Below we describe four examples of dubious treatments for autism that we regard as pseudoscientific.
While most other disabilities affect only certain domains of the disabled individual . . . autism impacts most or all domains . . . .
Facilitated communication
"Facilitated communication," or "FC," refers to a group of methods intended to assist individuals with severe developmental disabilities to express themselves through a typewriter, keyboard terminal, or similar device. Its proponents hold that many (if not all) autistic persons have a hidden literacy and that FC can unlock it. According to FC theory, autistic persons have a neurologic condition termed "apraxia." Apraxia involves hindrance of voluntary motor (muscle-related) behavior. Proponents of FC further maintain that the motor dysfunction of autistic persons is unrelated to cognitive (mental-process) abnormalities, and that with appropriate hand or arm support autistic persons can overcome communication deficits and express themselves meaningfully.
Initially, FC inspired hope in the families of many autistic individuals who were subjected to it. During FC treatment, otherwise mostly uncommunicative youngsters seemingly revealed such sentiments as "I love you," apparently waxed poetic, and/or ostensibly conversed very intellectually. It is thus no wonder that FC went largely unquestioned by the families of FC-treated autistic individuals.
But FC has since been the subject of several rigorous scientific studies, and their findings unambiguously attribute to the FC practitioners, called "facilitators," the typed messages that FC engenders. More-over, these findings strongly suggest that the "facilitators" are generally unaware of their influence in this regard. The American Psychological Association took its current position on FC in 1994: "Facilitated communication is a controversial and unproved communicative procedure with no scientifically demonstrated support for its efficacy." FC remains in use nonetheless.
Auditory Integration Training
Otolaryngologist Guy Berard developed Auditory Integration Training (AIT) in Annecy, France, reportedly to normalize hearing. It involves exposure to sounds of varying volume and pitch (i.e., the result of filtering and modulating music). Autistic individuals thus treated typically undergo a half-hour AIT session twice a day for about 10 days. AIT's postulate is that the autistic person's auditory system becomes more normal as it adapts to the randomly varying sound. Proponents of AIT claim that it improves the ability to speak, comprehension, eye contact, memory, and social behavior of autistic individuals.
The findings of one controlled study, one pilot study, and one uncontrolled study suggest possible benefits of undergoing AIT. But in four studies of the treatment, researchers did not report finding any specific therapeutic benefit. Three of these studies were randomized controlled trials (RCTs). In the most recent of these RCTs, O. C. Mudford and associates compared AIT's effects on 16 autistic children and the effects of a control in which such children were exposed to ambient music as they wore inoperative headphones. In the American Journal of Mental Retardation, the researchers reported detecting no benefits of undergoing AIT in terms of IQ, comprehension, and social or adaptive behavior. (Adaptive behavior relates, for example, to self-help skills, such as cutting and spooning food, brushing one's teeth, and dressing.) Indeed, on two measures the control group had outperformed the AIT-treated children. The authors concluded: "[N]o individual child was identified as benefiting clinically or educationally from the treatment." In 1998, in the journal Pediatrics, the American Academy of Pediatrics' Committee on Children with Disabilities said of AIT and facilitated communication in regard to autism: "[C]urrently available information does not support the claims of proponents that these treatments are efficacious," and "[T]heir use does not appear warranted at this time, except within research protocols."
Secretin
As a drug, the digestive hormone secretin is used in a single dose to facilitate diagnosis of gastrointestinal problems such as pancreatic disease and ulcers. The Food and Drug Administration has not approved any other medical application of the hormone. Secretin attracted considerable attention as a drug for autism in 1998, when it was publicized that the condition of an autistic child had reportedly improved significantly after secretin had been injected into him in a single diagnostic dose. On the basis of this lone case, thousands of parents had their children likewise injected.
In 1999 The New England Journal of Medicine published a study in which A. D. Sandler and associates investigated the effects of secretin in a single dose on 56 children with disorders in the autistic spectrum. The researchers found that, relative to a placebo, the secretin had had no effect in terms of standard behavioral measures. In a more recent study (see ), whose subjects were 20 autistic children, Melvin Heyman, M.D., and other researchers with the University of California at San Francisco found that secretin had had no significant effect on language skills in terms of standard measures.
Despite these negative scientific findings and the absence of positive scientific findings, lay interest in secretin as an autism drug has not abated much. Indeed, psychologist Bernard Rimland, Ph.D., states in an essay on the website of the Autism Research Institute (http://www. autism.com/ari/editorials/findings.html): "The use of secretin appears to be the most promising treatment yet discovered for the treatment of autism."
Dimethylglycine
DMG—n,n-dimethylglycine, which is sometimes mistermed "pangamic acid" and "vitamin B15"—is a natural compound that has been described as the active component of calcium pangamate and pangamic acid. DMG is commonly promoted as a means of increasing energy and boosting immunity, and often it is also marketed as a treatment for autism.
Some professionals claim that DMG treatment increases eye contact and speech and reduces frustration among persons with autism. In response to the proliferation of anecdotal claims of DMG effectiveness against autism, W. M. Bolman and J. A. Richmond conducted a double-blind, placebo-controlled, crossover pilot study of DMG treatment of eight males with autism. In this study, published in 1999 in the Journal of Autism and Developmental Dis-orders, DMG did not prove significantly different from a placebo.
What Could Be the Harm?
Because of (a) the lack of knowledge of what can cure autism, (b) the paucity of scientific research findings on most novel treatments for autism, and (c) the profundity of the disorder, most parents of autistic persons—and even many educators and health professionals—tend to make light of the risks of undergoing fringe treatments for the disorder. We do not suggest that the parents and physicians of autistic individuals refrain from inquiring about various treatment options—we merely recommend that they do so as informed doubters.
Such skepticism is important in considering treatments for autism for several reasons:
* Some pseudoscientific treatments for autism are promoted with hyperbolic or scientifically unverified claims of efficacy.
* Time and resources spent on pseudoscientific treatments are time and resources that could have been spent on established treatments. Moreover, any subsequent or concurrent improvement in the subject's condition may well be mis-ascribed to the pseudoscientific treatment and thus may lead to further squandering of time and money. Deterioration or mere lack of improvement with a succession of enthusiastically promoted pseudoscientific methods may make members of autistic persons' families cynical even toward established treatments the autistic individual has never undergone.
* In the history of drug therapy there are numerous examples of baneful substances that initially were deemed both therapeutically useful and without serious side effects. The effects of long-term use of secretin and DMG have not been investigated. Fur-thermore, there have been many cases of persons with developmental disabilities supposedly revealing through so-called facilitated communication that members of their families abused them physically and/or sexually. Parents have been convicted and incarcerated solely on the basis of spurious FC communications. Despite the wealth of scientific data attesting that the FC practitioners originate such communications, some courts permit their use as evidence.
The Bottom Line
Health claims favoring novel, undertested, and/or pseudoscientific treatments for autism should be taken with a large grain of salt. If a treatment sounds too good to be true, chances are it is neither good (effective) nor true (possessing a correct basis).
James D. Herbert, Ph.D. (james.herbert@drexel.edu), is an associate professor in the Department of Clinical and Health Psychology at MCP Hahnemann University, in Philadelphia.
Ian Sharp, M.A., is a doctoral candidate in clinical psychology at MCP Hahnemann University.
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autism (infantile autism): In medicine and psychology, a pervasive developmental disorder that shows up in early childhood and is marked by repetitive movements (e.g., spinning), resistance to change, shortness of attention span, lack of eye contact, inability to treat other persons as persons, and non-seeking of comfort in times of distress.
pervasive developmental disorder (PDD): Any of a group of nervous-system disorders characterized by deficits in communication and in diverseness of activities.
developmental disability: Any of a group of lasting incapacities, mental and/or physical, that arise before adulthood.
apraxia: Inability or underability to move coordinately, and/or to manipulate objects, even without problems related to bones, muscles, the senses, and/or comprehension.
pilot study: A relatively small-scale experiment designed as a prelude to large-scale scientific research (more specifically, to test research procedures and an initial hypothesis, for example).
randomized controlled trial (randomized controlled clinical trial, randomized control trial, RCT): An experiment (a) involving at least one tentative treatment or tentative preventive and one control (e.g., a placebo) and (b) in which subjects are allocated randomly into such groups.
secretin (incretin, oxykrinin): A hormone made in the mucous membranes of the duodenum and jejunum that can stimulate the stomach, liver, and pancreas to secrete certain digestive substances and can inhibit gastric acid secretion.
double-blind study (double-blind clinical study, double-blind trial): Any clinical experiment designed so that none of the participants (e.g., the subjects and those treating them) knows the identity of the treatment any subject is undergoing.
crossover study: A study in which subjects undergo different treatment courses sequentially.
(From Priorities, Vol. 13, No. 1)
http://www.acsh.org/healthissues/newsID.620/healthissue_detail.asp
