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.

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.

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.