Autism Treatment: Science or Pseudoscience?

Autism is a pervasive developmental disorder which has an impact on the individual’s sensory, social, and cognitive perceptions and abilities. It is characterized mainly by impaired social functioning (National Institute of Neurological Disorders and Stroke, NINDS, 2008): parents may notice that their toddler is behaving oddly: avoiding eye contact, physical contact, lacking cognitive skills or language, not playing with toys, or fixating on a particular object or activity obsessively for prolonged periods. Autism is currently one of the most common pervasive developmental disorders currently in existence. Described by the Centers for Disease Control as a “complex” disorder, often several specialists such as a speech therapist, neurologist, and psychiatrist may be needed for behavioral intervention.

At this time, the causes of Autism are relatively unknown. There is no known cure for Autism at this point in medicine, but what is known is that with early behavioral intervention, prognosis for those with the disability will be improved significantly, and if started while the brain is most malleable (Hockenbury & Hockenbury, 2006) drastic improvement in behavioral control and ordinary functioning can be achieved. Unfortunately, not all treatments are effective. Some “treatments” are actually not backed by science at all: they are pseudoscience

The reason Autism treatment is such a breeding ground for pseudoscience is for a few reasons. First of all, there is still little known about the causes of Autism. Autism has been on the rise recently (it is estimated at 7 to 13 cases per 10,000 persons, and that the incidence of a child born today being diagnosed with having some form of Autism is about 1 in 150 [Autism Speaks, Feb 8 2007]), though it is relatively hard to determine whether this is because of lifestyle factors or because the diagnostic criteria has simply expanded (APA, 1994). Since the causes are not clear and the diagnostic criteria is broad, the treatment options even among medical professionals are not clear cut: the National Institute for Mental Health asserts that “there is no single best treatment package for all children with ASD”. Additionally, diagnosis is typically made while the child is in preschool years (Herbert, Sharp, et al), indicating a possibility that some sort of outside factor involved in the development of what often seems to be a perfectly normal child up to a certain milestone in which the child ceases babbling or engage in pretend play, fails to respond to their own name, or becomes withdrawn from their primary caregivers (Autism Speaks).

Children with Autism, unlike some children with other forms of mental retardation or pervasive developmental disorder (such as Downs Syndrome or Fragile X Syndrome) appear to have normal physical and facial characteristics (in fact some children with Autism are described as being “strikingly attractive” [Herbert, Sharp, et al]). Parents become convinced that there must be a “normal child” inside their child with Autism-- they begin looking for a way to cure their kid. Unfortunately, there is no medical cure at this point of time, though there are several proven treatments that may alleviate some symptoms of the disorder so that with early intervention, the child may live a fairly normal, productive life. Unfortunately, in the state of devastation from the diagnosis, many parents don’t know where to turn, and that’s where pseudo scientists often “prey on people’s hope”, as Dr. Sebastien Bosch, a well-known ABA practitioner puts it. Bosch, who founded the California Unified Service Providers, says that customers who, in sheer desperation, do not scrutinize a product of pseudo science methods tend to be unable to resist a “quick fix” and wonder “what if…?“. Products which are typically pseudoscientific say that they “cure” Autism, or that the answer is straightforward, or does not require any sort of behavioral intervention.

Stephen Barrett, M.D. describes quackery as “the promotion of unsubstantiated methods that lack a scientifically plausible rationale.” . In some cases, quackery and pseudoscience is being bolstered without the individual knowing that what they are advocating is pseudoscience. Statistical errors and fraudulent information are sometimes passed along and regarded as fact by individuals with no intention of deception; often they are simply so dogmatically certain of the accuracy of their point of view that they are not open to information conflicting their paradigm. Unfortunately, some pseudo scientists are simply out to try to sell merchandise or remedies regardless of whether or not they are knowingly promoting snake oil.
But how exactly do pseudo scientists prey on parents of children with Autism? In fact, how does quackery manage to decieve ordinary people like you or me? Here are some methods used in pseudoscientific treatment.

The late Carl Sagan asserts that the distinguishing factor in pseudoscience treatment is that it is generally “based on insufficient evidence or because [pseudoscientists] ignore clues that point the other way," wrote Sagan.
Some pseudoscientific information begins with fallacies in the testing methods. First of all, in a study, a researcher coming in with a grounded theory can cause the researcher to observe the situation differently: in the most dramatic cases, only choosing to record information that backs up their own hypothesis. This is called researcher bias, and while true science does all it can to avoid this, pseudoscience uses this as a tool to support their initial claim.

Even if the researcher does not mean to skew their research, theory shapes our perceptions of reality. In his book Why People Believe Weird Things, Michael Shermer tells of Columbus visiting the New World (thinking, of course, that he was in Asia) and becoming convinced that the roots he had discovered matched the description for Chinese rhubarb, and that the New World nut he found even matched Marco Polo’s description of coconut (p 46).
Another experimental flaw is lack of a control group. First of all, with a control group, the research can more effectively show whether a difference in participant activity can be observed between those receiving a treatment and those not receiving the treatment. It also helps remove confounding variables which may be the reason for change as opposed to the variable being tested. For example subjects may dramatically change their behavior if they know they are being observed (M. Shermer). In addition, the researcher can intentionally influence the behavior of the participants, which is known as demand characteristics. Double-blind studies are done in psychology experiments to prevent such biases, but pseudosciences rarely (if ever) rely on double-blind studies, allowing variables to be altered if necessary.
The natural course of a regular scientific method is:

• A. Observe
• B. Create a hypothesis based on these observations
• C. Make predictions: set up an experiment based on hypothesis
• D. Carry out an experiment
• E. Draw conclusions. If hypothesis is not supported, revise hypothesis
• F. Make new predictions based on revision of hypothesis
• G. Carry out new experiment

(Wynn, C and A. Wiggins, 2001)

The course of the pseudoscientific method goes something like this:

• A. Form a hypothesis, look only for examples to confirm this.
• B. Do not seek evidence for disproval of the hypothesis
• C. Even when disproven many times, be slow to change the hypothesis
• D If info is too complex, adopt over-simplified hypotheses or strategies
• E. If there is no clear solution: if the problem is a trick and there is no right or wrong answer, form hypotheses about any coincidences observed.

(B. Sarger & G. Abe)

The correlational study can be used to show a relationship between two variables. For example, temperature outside would probably have a positive correlation on money spent on air conditioning. Hours of exercise per day would probably have a negative correlation on an individual’s body fat percentage. However, correlation does not always equal causation. Sometimes two factors can co-vary in a systematic way without being directly related to one another (Hockenbury and Hockenbury, 2006). And sometimes these variables are not related at all: the correlation occurs by pure coincedence. For example, "as the amount of seafaring pirates goes down, the temperature of the earth has risen".◊ Qualified scientists generally have a good grasp on this concept (I use “generally to avoid using oversimplification in terms of “all or nothing”-- a trick pseudoscienctists frequently utilize). However, in pseudosciences, any coincidental correlation in favor of their premise may warrant propaganda in order to publicize this correlation.

◊ for study, see: http://www.venganza.org/about/open-letter/

The incidence of a pure coincidence is often underestimated by the average person. The problem is that we believe the probability of something occurring is less than the actual probability. For example, take a room of 23 people. What are the odds that two of them share the same birthday? You might think it’s about 1 in 25, 1 in 30. Most people would guess 1 in 30 or more. Actually, it’s about 1 in 2. The reason for this is there are 23 people, but this creates 253 possible pairings of people. That means 253 out of 365 days per year, slightly over 1 in 2. (Good 1978:343) The problem here is that by not knowing the probability of an event, we believe it is less likely to occur, and so when it does we may find it to be a truly exceptional occurrence. Take another example of a New Jersey woman who won the lottery twice within a few months, which was reported to be a “one in seventeen trillion coincidence”. This is somewhat misleading, because if you were to take any specific person (say your best friend) on earth and say that the chances of their winning the lottery after buying only two tickets is indeed one in seventeen trillion, this is correct. However, among the millions who play, the odds of one of them winning is one in thirty. (cite) When enough people are involved, the probability of something happening to one of them becomes high. (Robert Novella, The Power of Coincidence). And, even if the one woman from NJ did win twice, what about all of those people who have played many times and have never won? We don’t hear stories about them; we’d find it mundane, so naturally nobody would write a story about an average person who didn’t win the lottery. We, as humans, tend to notice exceptional or intriguing events and forget or ignore ones that are unexceptional: novelty is important criteria in choosing stimuli to percieve (Dobkin & Pace, 2006).

Anecdotal evidence is not a good means for judging a product’s efficacy. People listen to testimonials because the person empathizes with the individual giving the statement; an excellent rhetorical device when writing a speech (Dobkin et al.). You have probably seen ads on TV or in publications which rely heavily on testimonial evidence (“I lost 45lbs using Jenny Craig!”). To compound this, if the individual giving the testimonial is somebody of an authoritative position (like somebody who holds a Ph.D., for example), then their ethos (a.k.a. credibility) is more likely to shape the audience‘s viewpoint (Dobkin). Multiple anecdotes can make it even easier to influence somebody‘s perceptions. Social influence is a strong psychological behavior modulator. If enough people believe an idea (particularly people you associate with), you may begin to believe it yourself; as psychologist Solomon Asch discovered in 37 percent of clinical trials, subjects arrived at the wrong answer on simple questions simply by following the majority who gave the incorrect answer (Asch, 1955, 1957). Informational social influence is when we look at a group as a source of accurate information: unsure of the accuracy our own perceptions, we turn to that of a group (Hockenbury and Hockenbury, 2006). This is how “common knowledge” is acquired: if enough people believe it, we figure it must be true.

Take Secretin as an example of anecdotal evidence run amock. The FDA recognizes secretin in a single dose as an effective way to diagnose gastrointestinal diseases and is not approved for any other use. Despite this, the use of the hormone secretin for the treatment of Autism has been hyped since the report of a child in who seemed to improve following administration of secretin (Horvath et al, 1998). In 1999, however, the New England Jornal of Medicine reported that secretin had no noticeable effect whatsoever on 56 children given a dose of the drug compared with a placebo (Sandler et al, 1999). Another study at the University of California found similar results regarding language and motor skills of 20 autistic children. Now, some parents reported that secretin played a positive role in their child’s functioning, but when a double-blind study was done and some of the children were given a placebo, there was no observable difference in the behavioral effects of either group. Several other studies have come to the same conclusions (Dunn-Geier et al., 2000; Owley et al., 1999). The trouble with anecdotes is they are often based on perception, when in reality the effects are caused by an extraneous source unrelated to the supposed “miracle drug”-- or at times there is no actual change, only the belief that change has occurred.
A more popular belief that pervades is that vaccinations cause of Autism. According to the established theory, low levels of mercury in thimerosal, a preservative used in vaccinations, cause mercury poisoning, which in turn causes Autism. The mercury-Autism link has been discredited by the National Institute of Mental Health (NIMH). A 1998 study indicated that there was a correlation between measles, mumps, and rubella (MMR) vaccinations (Wakefield et al). That theory, however, has been rebutted many times by more recent epidemiological studies, including a trend analysis of autism diagnosis and MMR vaccines showing that while autism rates increased dramatically (from 1988 to 1999 the rate of Autism rose from 0.3 in 10,000 to 2.1 in 10.000), MMR vaccination rates were fairly stable. Again, correlation does not equal causation, but lack of correlation is usually an indicator of… well, negligible or no correlation between the two variables, and it certainly indicates weak evidence that vaccinations are a major cause of Autism. Yet Chelation therapy is still utilized in the treatment of Autism, which removing metals from the body through (interveneous ethylene diamine tetraacetic acid (an amino acid only approved by the FDA for heavy metal poisoning) ), despite all reasoning to the contrary that this will not cure or alleviate Autism. The main difference between sceinctists and pseudo scientist is that if scientists find an incongruity, they will, as stated before, re-evaluate and change their hypothesis. In pseudosciences, the original conclusions will often be retained perpetually. Michael Shermer refers to this as the Planck problem: the immunity to new ideas which refute previously held concepts. As Planck himself put it: “An important scientific innovation rarely makes it way by gradually winning over and convincing its opponents… what does happen is that its opponents gradually die our and that the growing generation is familiarized with the idea from the beginning” (M. Planck, 1936, The Philosophy of Physics) This is one reason that the MMR theory has still not been abandoned, and that Chelation therapy is still abundant. Generation Rescue, an online site for the “cure” of Autism, continues to advocate Chelation therapy (Its central advocate is Jenny McCarthy, who has dished out anecdotal evidence left and right that her son has been “cured” of Autism). Even the Encyclopedia for Children’s Health states that “the chelation process can only halt further effects of the poisoning; it cannot reverse neurological damage already sustained“. Yet Generation Rescue still remains**.

**In response to the criticism: “ Parent responses is not a reliable way to gauge either a child's diagnosis or whether or not a child has been vaccinated.” The rebuttal response given is: “We would point to our "Methodology" section above and cite the CDC, who also uses a parent phone survey to gauge prevalence of NDs in children. We generally mimicked their approach.”. Another logical fallacy used to defend one’s self is “tu quoque”, in Latin, meaning “you, also”. Sometimes used as a form of ad hominem argument (dismissing the other person’s character flaws instead of addressing the problem itself-- which is ALSO a method used often in pseudoscience to prove one‘s self right (Shermer), tu quoque can be used to say “well, if I’m wrong, so are you!”

The mounting evidence unfavorable to chelation and the effectiveness of other “cures” being rejected is also due to our dislike for vagueness. Humans cannot STAND vagueness, and the idea that there may or may not be a cure for Autism-- and if there is science has not yet discovered it, but may in the future-- is not clean, concise, or certain, and we as humans cannot stand ambiguity, so this kind of “conclusion“ is irksome for us (M. Shermer, 1997). At the current time, studies have pointed to a possible correlation between certain chromosomes and the development of Autism. Several genetic factors that are being considered are promising: Autism Speaks published a press release that the Autism Genome Project team of over 170 leading researchers assembled the largest collection of autism DNA ever and discovered a family of genes on chromosome 11 in region 11p12-p13, which relate to neural functioning which could harbor Autism susceptibility genes. In addition, they found siblings with Autism had increased copy numbers in gene 15 which were maternally inherited. These findings are preliminary, but they lead us closer to the truth (Autism Speaks, 2007).
Studies have also found that those with Autism are also more susceptible to genetic disorders such as Phenylketonuria (PKU) or Fragile X in conjunction with Autism, indicating a genetic misfunction. In addition, the CDC’s Centers for Autism and Developmental Disabilities Surveillance and Epidemiology (CADDRE) are also currently working on a population-based study to better comprehend other risk factors for Autism.

Information on The Autism Genome Project can be found at: http://www.autismspeaks.org/science/research/initiatives/autism_genome_project.php

This is what the current research shows us, in a nutshell. You can see that it is not precise as asserting that Autism is caused by mercury poisoning, MMR vaccine contains mercury, so those who have Autism should be cleansed of heavy metals, and people should not vaccinate their babies. The problem, of course, is that if this is not accurate information, then all that will be done is that the parent, succumbing to this unambiguous theory, will spend money and time on chelation therapy for a supposed: time and money which could have gone towards early behavioral intervention (such as Verbal Behavior or ABA--Applied Behavior Analysis); programs which, while do not serve as a cure, have been found by many prominent sources and multiple trials (National Institute of Child Health and Human Development) to aid in the overall prognosis of the Autistic individual. Furthurmore, such information can be lethal: parents, in fear of Autism may unwittingly avoid vaccinating their infant, therefore greatly increasing the infant‘s chance of contracting any one of the (potentially fatal) diseases that children in developed countries are regularly vaccinated for. In addition, several so-called “miracle treatments” for Autism have not just been ineffective, but harmful. In 2005, a 5-year-old Monroeville boy died while he was being chelated with interveneous EDTA in the an attempt to cure his Autism. Even though this occurred several years ago, there was already mounting evidence at the time against chelation’s efficacy including a report done by the Immunization Safety Review Committee stating that the body of epidemiological evidence would give them inclination to reject a causal relationship between thimerosal-containing vaccines and autism.

If your child has been diagnosed with Autism, this disorder is treatable if proper intervention is made at an early age, preferably with some sort of method that involves behavioral therapy such as behavior analysis. This, however, is only my opinion, and if I have made any conclusions it is to be cautious when pertaining to treatments of Autism, as it is still widely an unknown sphere: even through immense bodies of peer-reviewed research, established scientists and psychologists do not yet know the absolute cause, nor can we project any conclusions about a cure until we are certain of these causes. Instead, talk to your medical practicioner for advice, adhere to some level of skepticism and investigate before you throw money at it, and remember: amidst all of the pseudoscience, there are also effective treatment options. With proper treatment, there is hope.

http://lilc1.hubpages.com/hub/Autism-Treatment-Science-or-Pseudoscience

Pseudoscience in Autism Treatment

By Julie Riggott
Pasadena Weekly | May 29, 2005
In one of this year's Academy Award-nominated films, a severely autistic young woman appears to make a miraculous transformation. Tested with the mental age of a 2-year-old, Sue Rubin had little ability to communicate with the world. When Sue was 13, her mother discovered facilitated communication (FC), a technique in which a facilitator helps the autistic person to type. Everything changed. Immediately, and for the first time in her life, Sue could share her thoughts and feelings with her mother. Eventually, she was retested with an IQ of 133 and even enrolled in college - with a facilitator. A brilliant mind was supposedly freed from its prison of silence.

This story of hope against all odds sounds like a feel-good Hollywood drama. But the lead character in "Autism Is a World" is a real woman, and the film was nominated for best documentary short subject.

What the documentary doesn't mention, however, is that FC has a dramatic and highly controversial history that reached a climax more than a decade ago when it was exposed as a pseudoscience.

Numerous controlled studies showed clearly that the autistic individuals were not actually communicating. Several professional organizations, including the American Psychological Association, the American Academy of Child and Adolescent Psychiatry, and the Association for Behavior Analysis, subsequently issued position statements indicating that FC is not a scientifically valid technique.

Yet Douglas Biklen, professor of Education and founder of the Facilitated Communication Institute at Syracuse University, continues to promote the technique vigorously. Not surprisingly, he also co-produced this film.

In seeming ignorance of the '90s expose by PBS’ “Frontline,” “CNN Presents” broadcast the film multiple times in May. Newsweek featured the film and its star in a sidebar story to its Feb. 28 feature, "Babies and Autism." The main article focused on the research being done to improve early diagnosis. But early diagnosis does parents little good if they don't find the most effective treatment for their children.

Newsweek and its affiliates, MSNBC and "The Today Show," did little to help parents make sense of all the treatment options. With the exception of an ABC Nightline feature, the recent flurry of publicity about autism has not focused on scientifically validated treatments. Instead, pseudoscientific approaches with little or no evidence of their effectiveness continue to be presented as equally valuable treatment options. And parents continue to face a daunting array of approaches without guidance about where to turn. Meanwhile, scientists already know that the most effective intervention is early, intensive applied behavior analysis (ABA).

One day at a time

By definition, children with autism have problems with language and socialization. They either never develop speech or suddenly lose whatever words they have learned and exhibit little or no eye contact and interaction with people.

They also may rock, flap their hands or engage in other repetitive behaviors. The additional curse of the disorder is that many autistic children often appear physically no different than other children; they don't look like there is anything wrong with them. Though the severity of symptoms differs from child to child, the overall effect is one of isolation and lack of emotion. Parents often describe their children as retreating to their own world with no indication that they understand the one around them. In fact, the word "autism" has been around longer than the diagnosis. It refers to a state of absorption in mental activity and withdrawal from reality. Understandably, these social deficits create a highly emotional situation for the parents.

Anne Marie was diagnosed with autism at 22 months after she stopped responding to her parents, saying "mama" and "daddy," or even shaking her head yes or no. She sat with a blank expression at her own birthday party, didn't smile, and showed no interest in her presents. At other times, she could be mesmerized by a piece of dust, staring at it for minutes on end. Two years later, Anne-Marie's younger brother, Michel, was also diagnosed with autism, plunging the family into an even deeper abyss.

Anne Marie and Michel's mother, Catherine Maurice, said that a list of symptoms can't do justice to the emotional nightmare that is autism. "Those facts convey nothing of what can only be called the anguish of this time. They can't convey the searing panic as something begins to steal your child away from you. They don't even hint at the shock, the sleepless nights, the dry throat and pounding heart, the physical invasion of grief and fear," she commented at a presentation to the Cambridge Center for Behavioral Studies. Maurice also chronicled the series of "treatments out there that promise much and deliver little" that the family tried prior to finding ABA in her book, "Let Me Hear Your Voice."

It is an all too common story. Parents caught up in intense emotions are desperate to try anything to bring their children back.

"The problem with the myriad of treatments for autism is that they prey on people's hope," said Dr. Sebastien Bosch, clinical director and co-founder of California Unified Service Providers and an ABA practitioner. "And most consumers are not evaluating the 'product' in an informed manner because the promise of the 'quick fix' or the 'what if ...' is irresistible, and rightly so, for desperate parents."

The late Carl Sagan addressed the serious problem of pseudoscience in his 1997 book, "The Demon-Haunted World: Science as a Candle in the Dark." Pseudosciences, he explained, appeal to our emotions rather than our intellect. They are also easier to present to the public than science, because of their relaxed standards of evidence, so a culture lacking knowledge of scientific methods is easily swayed.

While some pseudosciences, such as astrology, ESP and "ufology," are more obvious, those cloaked more deceptively in the terms of science, for example, in medicine and psychology, are more difficult to detect. "Pseudosciences purport to use the methods and findings of science, while in fact they are faithless to its nature - often because they are based on insufficient evidence or because they ignore clues that point the other way," wrote Sagan.

"It is no coincidence that many promoters of 'quick fixes' avoid rigorous scientific scrutiny of their treatments, and use emotionally-laden language to promote those treatments," said Dr. Gina Green, lecturer in public health and special education at San Diego State University. "Put simply, pseudoscience has always sold better than science. So those who promise that autism can be cured or ameliorated substantially with a pill, a vitamin, a diet, some sensory stimulation, some exercises for the ears or eyes or brain, or some play time with their parents or typical children find a large and eager market for their services and products."

Green has worked in treatment and research involving people with autism and other developmental disabilities for about 30 years. "Autism," she has found, "is the perfect breeding ground for pseudoscience."

'Candle in the dark'

One reason for the abundance of untested and ineffective therapies in autism is that the disorder is shrouded in mystery. In 1943, Dr. Leo Kanner at the Johns Hopkins Hospital described the symptoms as a distinct disorder from childhood schizophrenia and named it "early infantile autism."

In 2004, researchers still don't know the causes and haven't found a cure. Prevalence estimates vary between 1 in 500 and 1 in 1,000 births per year. Whether diagnoses have skyrocketed due to better understanding of the symptoms or there is truly a new epidemic is thus far unclear.

Nonetheless, autism is a serious health problem. The National Institute of Mental Health's (NIMH) investment in autism research has quadrupled over the past seven years from $9.4 million to $36.2 million.

"Almost any situation where there is a lot of uncertainty tends to invite a lot of speculation," said Green. "Thus there have always been many theories about what causes autism and what might be helpful for treating it."

Therapies claiming to treat autism range from biomedical and nutritional to psychological and emotional. Most have not been subjected to scientific testing. Of those that have, "the overwhelming majority proved to have no beneficial effects, while others were shown to have harmful physical and emotional side effects," said Green. "Just a few examples are patterning and other therapies, sensory and auditory integration therapies, various psychoactive drugs, secretin and FC."

Yet most of these treatments or variations of them are still being promoted by many mainstream organizations and the media. Millions of dollars are spent every year on treatments for autism, many of them ineffective. FC keyboards can cost as much as $4,300, according to People magazine, which also gave a largely glowing and uncritical account of the supposed wonders of FC. Then there's the cost of hiring a facilitator.

There are numerous other treatments without scientific merit, including colored-lens therapies, music therapy, dolphin therapy, the rapid prompting method and occupational therapy, including the "squeeze machine."

Dr. Patricia Krantz is executive director of the Princeton Child Development Institute, which was featured in "The Today Show's" recent series on autism.

She said, "It is not possible to say that different approaches work for some and not for others because applied behavior analysis is the only approach that has a body of data about effectiveness." In reference to other programs that "The Today Show" highlighted, Krantz said, "TEACCH [or Treatment and Education of Autistic and Communication Handicapped Children] and Floor Time have little or no data about effectiveness." The bottom line, said Krantz, is that "marketing contingencies compete with science."

There are many reasons why pseudoscience gets more publicity than science. Robert Park, professor of physics at the University of Maryland and author of 2000's "Voodoo Science: The Road from Foolishness to Fraud," explained in his book: "New results and ideas are argued in the halls of research institutions, presented at scientific meetings, published in scholarly journals, all out of the public view. Voodoo Science, by contrast, is usually pitched directly to the media, circumventing the normal process of scientific review and debate. ... The result is that a disproportionate share of the science seen by the public is flawed."

Instead of relying on scientifically proven procedures, pseudoscientific treatments often depend on anecdotal evidence in the form of success stories or testimonials from users and purveyors. They often ignore scientific facts and research that contradicts their claims. Parents should especially be skeptical when the only group to admit the effectiveness of a given treatment is the one that stands to make money from it.

Beware, said J. Grayson Osborne, professor of psychology at Utah State University, of "faux fixes" that have no research and no data to prove that they work. And avoid programs with poorly defined or measured goals and no program evaluation. Autism is a pervasive and chronic disorder, and no magic can claim to solve the problem quickly. "Be skeptical," Osborne warned, "when someone is about to wave a wand."

The antidote to pseudoscience is, as Sagan suggested, skepticism and an understanding of the methods of science. With this "candle in the dark," parents can better recognize pseudoscience.

Potential danger

There are organizations that parents can rely on for scientific and accurate information. The Association for Science in Autism Treatment (ASAT) thoroughly discusses various treatments including auditory integration training, FC, the Miller Method, Sensory Integration, the Son-Rise Program and TEACCH, a statewide program in North Carolina, on their Web site (www.asatonline.org). It found that none of these programs have peer-reviewed, scientific studies or evaluations of their effectiveness.

The Cambridge Center for Behavioral Studies (http://www.behavior.org) is another good resource for parents looking for research articles and links to reliable resources. The NIMH Web site says that the efficacy and safety of dietary interventions, vitamin supplements, and secretin "have not been proven in clinical trials." It also recommends various questions that parents can ask when evaluating treatment options. Some of those are: "How is progress measured?" and "Will my child's behavior be closely observed and measured?"

Furthermore, the NIMH Web site states that, "to be accepted as a proven treatment, the treatment should undergo clinical trials, preferably randomized, double-blind trials that would allow for a comparison between treatment and no treatment."

Applied behavior analysis is based on experimentally discovered principles with decades of validated and replicated scientific research to support it. Therefore, the NIMH lists ABA as the only documented effective treatment for autism. It also cites "Mental Health: A Report of the Surgeon General," which confirms that "thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior."

The ABA experts in this story convened in Dana Point in February at the annual meeting of the California Association for Behavior Analysis, a regional branch of the international Association for Behavior Analysis. A point reiterated during the conference was the importance of ensuring the availability of qualified ABA practitioners. According to many of these psychologists, demand for ABA treatment is currently much higher than the supply of qualified practitioners - a problem hopefully being remedied by the Behavior Analyst Certification Board.

The Maurice family's story has a happy ending - not because of a miracle cure, but because of intensive ABA.

Anne Marie and Michel went from withdrawn and silent to "empathetic and engaging." They performed well in school, developed good social skills and live normal lives with no obvious signs of autism.

Not all stories end as well. One of the obvious dangers of pseudoscience in autism is that time is wasted when intervention is most crucial and there is the best chance for recovery.

"We have a sense of emergency because the children are most malleable between the ages of 2 and 4," said Bosch of California Unified Service Providers.

Another problem is that time and money spent on false promises are diverted from legitimate research and progress. Of course, there is also the potential for emotional and physical harm.

"Probably the most dramatic illustration of the dangers of pseudoscience in autism ... is the worldwide public health crisis that has been created by the pseudoscience behind the vaccine scare," said Green.

The theory that the low levels of mercury in thimerosal, a preservative used in vaccines, caused autism has not been proven, and the authors of the original study retracted their claims. The NIMH reports this information on its Web site, but the belief that there is a link between mercury and autism is pervasive. So much so that the latest pseudoscientific trend in autism treatment is based on this misconception. Chelation therapy is a process that involves removing metals from the person's body through intravenous infusions, transdermal creams or other methods.

Quackwatch.com is a Web site devoted to investigating healthrelated frauds and myths. Here parents can find information about chelation, among other autism treatments that have no scientific validity. Quackwatch, which boasts a 152-member scientific and technical advisory board, reports that studies from the US Centers for Disease Control and Prevention and the Institute of Medicine confirmed that there was no link between thimerosal and autism.

Another study published in the British medical journal The Lancet concluded that "administration of vaccines containing thimerosal does not seem to raise blood concentrations of mercury above safe values in infants."

Furthermore, thimerosal has been removed from many vaccines, and "none of the vaccines now used to protect preschool children against 12 infectious diseases contain thimerosal as a preservative," according to Quackwatch.

Surprisingly, the MMR vaccine, which is most often blamed for causing autism, never contained thimerosal in the first place. Still, many parents are refusing to give their children vaccines, and others are trying chelation.

Given that it is based on a disproven theory should be reason enough to avoid it, but chelation is also expensive and dangerous. It has caused physical harm and death in some cases. Because it is called a biomedical therapy and is promoted and practiced by a few physicians, parents may be less skeptical than they should be.

Clever Hans

The FC debacle reveals just how dangerous pseudoscience can become.

In the early 1990s, FC was hailed by practitioners and the media as a miracle that allowed disabled people to share their thoughts and feelings for the first time. In many instances, the facilitator holds the autistic person's hand and helps them to type out a message on a keyboard with one finger. People diagnosed as mentally retarded or autistic took their facilitators to school and suddenly became model students and began writing poetry and short stories.

Parents and teachers were swept up in the frenzy of the sudden and newfound verbal skills of their autistic children and students. Then the phenomenon took a strange turn. An inordinate number of children and their facilitators started accusing their parents or others of sexual abuse. Parents and caretakers were arrested, children were placed in foster care, and many lives were ruined.

Not until it reached this level of controversy did people begin to question some obvious inconsistencies. For instance, often the autistic people did not even look at the keyboard, while the facilitators never took their eyes off of it. And it is well known that typing with one finger without looking at the keyboard is impossible.

Also, autism does not typically cause physical disability or fine motor difficulties, so why would autistic individuals need physical assistance? And how did people who did not know how to read or write suddenly type sophisticated, grammatically correct sentences?

When scientists stepped in, more than 50 controlled studies and blind tests, in addition to numerous controlled tests conducted in legal cases, revealed FC as a hoax. These studies showed, without a doubt, that the FC messages were controlled by the facilitators, not the disabled people.

In some double-blind tests, for example, the facilitator was shown one picture and the disabled person another. Without fail, the disabled person then typed what the facilitator saw. But to the untrained observer, the technique, like other pseudoscientific therapies, appeared to work.

Sometimes, the influence of the facilitator is less obvious, because the facilitator might not hold the person's hand, but support their arm or touch their shoulder -- or even simply observe the typing.

"Naked-eye, informal observations and facilitators' reports absolutely cannot be relied upon to reveal control [by the facilitators] because the cues provided by facilitators are often very subtle, and facilitators typically deny it even in the face of evidence," explained Green of San Diego State, who consulted with families involved in lawsuits during the FC debacle.

The obvious or subtle influences of facilitators were shown to be the equivalent of the Ouija board effect or the Clever Hans phenomenon. While the Ouija board obviously uses hands-on control to move a device across a board, the story of Clever Hans shows that touch is not even necessary.

As explained in the "Skeptic's Dictionary," in the late 19th century, a man believed that his horse, Clever Hans, could solve mathematical equations by tapping his hoof the correct number of times. It was eventually discovered that Hans was responding to unconscious subtle movements from his owner that caused him to start and then stop tapping his hoof at the right time. When Hans couldn't see his owner or his owner didn't know the correct answer, Hans could not answer correctly either. Psychologists have long known about the phenomenon of such "unconscious cuing" in humans, and FC proved to be another example.

Even in the face of overwhelming evidence showing FC to be a hoax, Biklen continues to promote it. There still are no scientific data supporting the validity of FC, even from Biklen's Facilitated Communication Institute at Syracuse University.

Considering FC's controversial history, the publicity surrounding the Academy Award-nominated documentary is less than encouraging evidence about the longevity and appeal of pseudoscience.

Said Green, "This film and the hype surrounding it are hitting a new generation of parents of children with autism who are largely unaware of the history of FC and again are likely to be vulnerable to the seductive claims being made about it."

http://www.altweeklies.com/aan/pseudoscience-in-autism-treatment/Story?oid=147039