Controversies in autism Autism

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(Tagged November 2005)

There is considerable disagreement over the exact nature of autism. It is generally believed to be a spectrum or cluster of physical, mental and emotionalconditions, of varying severity, none of which are well understood. Despite the many physical conditions comorbid to autism spectrum disorders, diagnostic criteria, as of 2006, are still limited to psychiatricevaluation methods.

The cause(s) of autism and the spectrum of pervasive developmental disorders(PDDs) are as yet unknown, as are the prognoses, or best treatment options. There is, however, widespread agreement that early diagnosis and intervention can often make a significant difference for an autistic person's long-term prospects, because the human mind and nervous systemare more plastic at a younger age. Therefore, there is a focus on research for possible therapies and treatments that will be helpful to children diagnosed early with a spectrum disorder. However, many adults on the autistic spectrum, and other interested parties, believe that this emphasis on the problems facing children has often limited research and treatment options associated with adults with autism.

The medical community considers autism to be essentially incurable at this level of knowledge about the disorder, or at least to have life-long effects. Meanwhile, judging by the plethora of material on the internetand elsewhere, many autistic spectrumadults and neurotypical(non-autistic) allies in the autism rights movementdo not consider autism to be a disorder, but simply a different way of perceiving and behaving. These people believe that at least some of the difficulties encoutered by people with autism may result from prejudiceand lack of accommodation from society.

With knowledge being so limited, and scientific progress slow, nearly all aspects of dealing with autism are hotly debated. Parents of autistic kids face a bewildering set of choices, and attendant uncertainty about the merits of various diagnoses, prognoses, and alleged 'cures' and treatments. Some of these controversies are described below.

The usefulness and accuracy of autism as a diagnosis

The 1994DSM-IVcriteria for the diagnosis of autism is the result of several revisions, the psychiatric community divided as to whether the condition should be ordered by severity along a spectrum, or categorised into multiple distinct disorders that have similar symptoms. This division is exacerbated by the wide range of conditions comorbid to autism spectrum disorders. Research and clinical experience suggests that, while autism may appear to manifest as a psychiatric disorder, its underlying causes are neurological. PDD has emerged as an overarching descriptive term for the cluster of disorders that includes autism.

A diagnosis of autism is complicated by the fact that there is no definitive test, due to the significant variance in the severity of symptomologyamong people with autistic traits. Those with Asperger syndromemay be highly functional cognitively, but lacking 'social' skills, whereas others with 'profound autism' may be non-verbal and deficient in elementary skills. Some autistic people are 'mentally retarded', having low IQs (Intelligence Quotients); others have average or above average intelligence; and a minority have narrow, but exceptional autistic savantabilities.

This is not just an academic issue - treatment strategies and choices are based on definitions of what needs to be changed. Different treatment approaches have had widely divergent outcomes for the autistic person - some parents claim their children recovered with only behavioral approaches, some with biomedical intervention, and others report little or no progress after trying many different approaches. Other parents claim their autistic children have simply "grown out of it".

There are also those (primarily the autistics themselves) who reject the premise that autism is necessarily a disorder that should be cured. In their view, a diagnosis can sometimes result from a judgment of non-conformity that is followed by efforts to correct what are essentially personalitytraits.

Asperger's and autism

Currently, Asperger syndromeis classified as a separate diagnosis from autism in the DSM-IV, but is still considered an autism spectrum disorder. The primary distinction between the definitions in the DSM-IV is that autism involves a speech delay and Asperger's does not. Many people believe autism and Asperger's syndrome should not be given separate labels in the DSM-IV because of differences in language acquisition, others because they believe autism and Asperger's to have no definitive differences. It is also unclear whether an autistic child who learns to speak and is high functioning should have their diagnosis changed to that of Asperger's Syndrome.

Geeks and nerds

It has been suggested that so-called geeksand nerdsare undiagnosed persons with Asperger's syndrome. This has been disputed by professionals who indicate that geeks and nerds simply exhibit normal variant behavior, not pathological behavior. It should be noted, however, that many persons diagnosed with Asperger's syndrome also believe their behavior is not 'abnormal' per se, and reject the notion that any divergence from a supposed ideal should be considered pathological. There are cases of persons who considered themselves simply geeks or nerds but later realize a diagnosis of Asperger's may apply to them, for example after having a child diagnosed autistic.

Since the terms 'geek' and 'nerd' are social stereotypes rather than terms that can be genetically or behaviourally defined, this issue has not been resolved. Some suggest that there is a trend to pathologize almost any variant human behavior (e.g., ADHD) which could be interpreted as a method of phasing out ad hocterms such as 'geek'.

'Autistic' vs. 'Has autism'

Individuals who describe themselves as autistic on the internethave repeatedly stated their preference for the word autistic to be used as an adjective, as opposed to a pronoun. That is, they dislike the so-called person-first terminology. In fact, it appears the vast majority of persons diagnosed as autistic who express their views verbally or in writing hold this position, across the spectrum. They contend that autism is part of their very being, not something that could potentially 'go away', much less be 'cured'. Even if autism could be removed, they say that would be akin to ceasing to exist.

Person-first terminology is preferred by many of those with other conditions, such as epilepsy. Such is not often the case in the autistic community, where most members wish to avoid defining the individual solely by their condition. Clearly, however, many autistics do feel that autism is an integral part of their identity.

As with other such arguments involving the autism rights movement, many parents of autistic children disagree with the position of the autistic self-advocates. They contend that their children, in fact, "have autism". The implication of this view is that autism is and should be 'removed' or 'cured'. Such parents often cite regressive autism, mercury poisoningand other arguments as support for this position.

Person-first terminology appears to be the preferred form in the autism literature, but people who are not emotionally involved in these arguments are generally not bothered by either usage.

Epidemiology of autism

There is uncertainty and controversy over whether the incidence of autism is actually increasing, or if there simply is an increase in the number of reported cases. Some argue that if the incidence is rising, then environmental factors play a greater role; while if it is being reported more often, geneticsdeserves more attention. Others argue that rising incidence can be explained primarily by genetics. One theory, particularly associated with Simon Baron-Cohen, suggests that increased social mobility and assortative matingmay lead to the genetic amplification of autistic traits. Natural selection of traits useful in the information age has also been noted.

Anecdotal reports from school districts and physicianslend support to the impression that the incidence is rising, and some studies appear to support this as well. Some believe the incidence has risen markedly in the last few years, from about one in 5000 to estimates ranging between one in 400 or even as high as one in 166, and believe we are facing a major societal problem. In the United States, the Centers for Disease Control(CDC) has vacillated between the latter two figures. In January of 2004 the CDC sent out and autism alarm to all pediatricians stating that they beleived that one in 166 children had an autism spectrum disorder and far worse one in 6 now suffered from a neurodevlopmental or behavioral disorder. Othes have put these figures as high as one in 40 for autism and one in 3 for the neurodevelopmental or behavioral disorders.

Others point out that several factors are likely to cause increased reporting. First, the broadening definition of autism, which began most markedly with revised classifications in DSM-III-R in 1987, and the greater availability of services for autistic individuals, some say, creates an incentive to be inclusive in the diagnosis. Second, the last few decades have seen a greater awareness of autistic traits among pediatriciansand other medical specialists. It is surmised that some children who were previously diagnosed as retarded, or as having a psychoticdisorder, are now diagnosed as autistic, or with PDD. Autism was once believed to be a type of childhood schizophrenia.

It will take time to resolve these diagnostic prevalence issues. As noted above, there is no definitive, standardized way to diagnose autism. This problem applies both for purposes of measuring past, present and future incidence. There are important implications from this controversy, because the answer will guide both the allocation and magnitude of research, legal action, and therapy.

Genetics and autism

There is evidence that autism has a genetic component, and ongoing research focuses on finding the biomarkers that determine autistic phenotypes. But there is significant disagreement as to whether genes contribute to a vulnerability to environmental triggers, or have another role in the etiology of autism.

There is a trend in research towards viewing genetics as an underlying factor. However, most autistic children have apparently neurotypicalparents, which suggests that a single gene cannot be the cause. The spectrum of autistic disorders is notable for its significant genderdisparity, with the incidence of autism in males greatly exceeding the incidence in females. A 1994study estimated the ratio at three males to one female, while a 1982Japanese study indicated a ratio of nine to one. Several studies on human and animal tissue suggest that testosterone potentiates the toxic effects of mercury, hence any gender disparity has been suggested to add credence to the theory that mercury plays a role in the etiology of autism. There are some, however, who speculate that autism occurs equally in both sexes, and that males are simply more likely to be diagnosed because of differences in childhood socialization.

Scientists have recently (July, 2005) shown that variations in the gene for protein kinase C beta 1 (PRKCB1), a protein with an important role in brainfunction, are strongly associated with autism. This exciting finding suggests some answers to a number of previous, but unexplained, observations about autism and provides the potential for a mechanistic explanation for some of the characteristics of the condition.

Implications of genetic testing

If and when genetic testing for autism becomes available, it is anticipated that many women pregnant with an autistic child will decide to abort the pregnancy. There is some precedent from Down's Syndromewhich points in this direction. Autism rightsadvocates believe this will be akin to genocide. Furthermore, the impact of such an event on the human species as a whole could be very significant. Assuming that it is true that people such as Albert Einsteinand Isaac Newtonwere autistic, as some speculate, common pro-lifearguments such as "What if the next Einstein were to be aborted?" would potentially be more biologically persuasive.

Vaccines and autism

In the late 1990s, controversial theories arose linking childhood vaccinations to autism.

Thimerosal

One theory of the etiology of autism claims that early childhood vaccinationscause a shock to a child's immunological, neurological, and gastrointestinal systems. These claims are based on several factors, including the presence of thimerosalin some vaccines, as well as the immunogensthemselves.

Until a few years ago, some formulations of vaccinescontained thimerosal, a mercury-based compound, for the purpose of preserving multi-use vaccine containers. In sufficient quantities, the ethylmercuryused in thimerosal containing vaccines (TCVs) is neurotoxic, and thus it is tightly regulated by the EPA. Several formulations of the vaccines for Hepatitis B, diphtheria, tetanusand pertussis(DTP/DTaP) in particular used to contain thimerosol, and were typically administered to children under the age of two. Also, some flu vaccinesadministered to pregnant women and infants still contain the compound. A recent theory is that children who develop autism subsequent to vaccination lack sufficient ability to eliminate mercury due to reduced quantities of enzymesin the trans-sulphation pathway of the brain, and thus, cannot make enough glutothione which plays a vital role in the elimination of ethylmercury from the body.

It has been suggested that the rate of autism spectrum disorders in the early 1990s correlates with the expansion of the vaccine schedule to include Hib and Hepatitis B vaccinations, both of which contained thimerosal. Also, the Rh(o) immune globulin, which also contained the compond, began to be routinely used for RH negative pregnant women at 28 weeks of gestation during these years.

Whilst denying the link between autism and TCVs, vaccine manufacturers have discontinued the use of thimerosal in standard vaccination scheduleinoculations, though physicians continued to use their existing stock of TCVs for some years afterwards.

Critics of the theory note that whilst some reports suggest the prevalence of autism is dropping, others do not. They claim this may suggest that thimerosal has had no causal role in the increase in rates of autism.

MMR triple vaccine

A possible link between the measles, mumps and rubella (MMR) triple vaccine (which, containing live, attenuatedviruses, cannot be preserved by thimerosal) and autism was suggested in 1998, when Wakefield and colleaguesdescribed a novel syndrome, later described as autistic enterocolitis, in a study published in the Lancet. The study of twelve children with bowel symptoms and regressive developmental disorders, mostly autism, has been strongly criticized for a number of alleged weaknesses, such as small sample size (albeit typical of such studies), funding sources, and particularly for subject selection; according to at least one source (report), all subjects were already litigants and some were recruited before clincal approval was granted.

Further epidemiological studies were conducted with larger sample sizes (using medical records rather than clinical study) in a number of nations. These report that there is no evidence of correlation or causality between thimerosal or MMR, and autism.[1] These reports, too, have been criticized, primarily on the grounds of potential conflict of interestand data manipulation. It should be noted that it is not uncommon for early, widely-publicised studies to be contradicted by subsequent, more detailed research; one review, by Dr. John Ioannidis, found that a third of such studies are subsequently contradicted or seriously weakened by later research.

In 2004, 10 of the 13 authors of the original Wakefield study retracted the paper's recommendation that further studies into the possible link between environmental triggers, particularly the MMR, and autism should be further investigated, stating that the data were insufficient to establish a causal link between MMR vaccine and autism [2]. However failing to prove that link exists is not the same as proving that there is no link (since it is impossible to prove a negative) and the controversy continues.

Mercury in Medicine: Taking Unnecessary Risks

A report prepared by the staff of the Subcommittee on Human Rights and Wellness, Committee on Government Reform (Unites States House of Representatives), Chaired by Dan Burton and published in the Congressional Register in May of 2003 stated:

"However, the Committee upon a thorough review of the scientific literature and internal documents from government and industry did find evidence that thimerosal did pose a risk. Thimerosal used as a preservative in vaccines is likely related to the autism epidemic. This epidemic in all probability may have been prevented or curtailed had the FDA not been asleep at the switch regarding the lack of safety data regarding injected thimerosal and the sharp rise of infant exposure to this known neurotoxin. Our public health agencies? failure to act is indicative of institutional malfeasance for self-protection and misplaced protectionism of the pharmaceutical industry.?

This report also estimated that the damage done to the US by the autism epidemicexceeded twenty trilion dollars. It has been suggested that the autism symptoms seen during the current epidemic are consistent with regressive autism because these children generally meet developmental milestones during the first year of life, then apparently pause or regress in their development, often at approximately 18 months of age. The timing of symptom onset seen in regressive autism has been used to suggest an important role of vaccinations in the etiology of autism.

Intelligence and autism

Until recently, a large proportion of children diagnosed as having autism were also believed to have mental retardation. The term 'mentally retarded' itself is debatable because this determination is based on IQtesting, which has its own set of controversies and detractors. A more accurate description would be to say that children who are diagnosed autistic may also have low IQ scores. However, this view is inconsistent with other findings, particularly the increased incidence of 'high functioning' autism and the recognition of Asperger's syndrome as being part of the autism spectrum.

Autistic persons who have normal or high intelligence are often not diagnosed with autism, so the average IQ of the autistic community as a whole cannot be determined. Furthermore, anecdotal accounts of autistic children whose IQ scores have increased dozens of points over a relatively short period of time are not uncommon. It has been suggested that these increases do not correspond to an increase in actual intelligence however; perhaps, like any children, the autistics may simply get better at taking IQ tests (the so-called practice effect).

Characteristics observed by some studies as being associated with gifted childrenat least appear to be analogous to those of autistic children:

These findings have led to speculation that high intelligence and autism are related. Autistic author Temple Grandinspeculates that geniusitself "may be an abnormality."[6]

An alternative view is that autism and intelligence are unrelated; autistics with all levels of intelligence have been observed. According to this view, autistics with low intelligence would be more likely to be recognized and diagnosed as autistic. Those with normal to high intelligence might be better able to articulate their experiences (either verbally or through writing). These autistics might be labeled as high functioning regardless of their other neurological deficits.

Prognosis for autistic children

Children who are diagnosed with autism face a great range of outcomes. Some are reported to have learned speech and/or writing, self-care, and social skills on their own. Others experience an apparently miraculous "recovery" and begin behaving in a way that is generally indistinguishable from the way non-autistics behave, either for no apparent reason or, apparently, from a few simple alterations in diet. Some become mainstreamed after years of hard work and intensive training. Some develop slowly, but never become typical. There are a few who never move beyond a level of functioning that society perceives as 'low'. Yet others are fairly typical during childhood and report becoming "more autistic" in adulthood.

It seems paradoxicalthat while some people see early intervention as crucial for autism, the prognosis is also most uncertain the younger the child is. An idiosyncratic development path may be confused with a more severe disorder, and the child may 'catch up' on his/her own. Research indicates that the human mind and nervous system remains plastic for longer than originally thought, and autistic persons, like those with learning disabilities, have been known to develop all their lives.

There is broad consensus in the medical community to the effect that autistic behaviors can be improved through training, medical or educational interventions, though there is wide disagreement on what the right kinds of treatment are and what the appropriate objectives should be.

Treatment choices

It follows that there are a number of issues about the right way to deal with autism. These issues complicate the choices that confront parents with children who have developmental delays and/or diagnosed as being on the 'spectrum'.

It is particularly problematic that almost all approaches tried by parents have not been validated by double-blindstudies. Scientific rigor is of particular significance in studying a disorder such as autism given that its diagnosis is based on the subjective observation of certain behaviors, not on objective metrics such as genetic tests.

In many cases any long-term consequences and risks are unknown or have not been studied in depth. It is also believed that no approach will work equally well for all autistic children.

Discredited approaches

The Bruno Bettelheimhypothesis that autistic children are the product of emotional abuse -- specifically, unsympathetic, emotionally distant "refrigerator mothers" -- has been discredited. There is no evidence to support the idea that autistic children - as a group - have shut themselves in because their parents didn't give them enough love and attention. Bettelheim prescribed "parendectomy", i.e. removal of the parents. Given how sensitive and easily frustrated autistic children are, the potential damage caused by this approach cannot be understated.

Behavioral interventions

Several schools of thought exist about behavioral interventions to treat autism. The most prominent is Lovaas/Applied Behavioral Analysis(ABA), which involves training autistic children through intensive trials (40 hours a week is often recommended) and reinforcement of limited tasks that grow more complex over time. A common method of conditioningused in ABA is that of offering some food or a drink after successful completion of a request. While this is a proven method for developing specific skills in children who do not respond to conventional reinforcement (e.g., parental approval), it is often criticized for being harsh, stringent, and not conducive to general skill-building. Its long-term outcome is questioned, and it has been suggested that full-time pressure of this kind can lead to posttraumatic stress disorder, anxietyand depression.

There is also some controversy about its effectiveness. Original ABA studies looked promising, but subsequent ones have not replicated their success fully. Furthermore, no double-blindABA studies have been conducted. Studies on ABA are often conducted by ABA advocates.

The Greenspan/DIR approach seeks to stabilize the child's environment and then taking his/her lead to create learning opportunities through "floor time" and related approaches. While this has proven effective for children with strong sensory needs, the approach is often criticized for catering to the child's limitations rather than building strengths.

Other approaches pioneered by Marion Blank, Barry Kaufman, Arnold Miller, and others are less popular and known but have similar supporters and detractors.

Drug therapy

The benefits of drugs is widely disputed. While anti-seizure medication is indicated for some children with seizures, many parents are opposed to using psychopharmacology to treat their children. They point out that autistic people are not necessarily psychotic, particularly anxious, or depressed. Many autistic people themselves are against the overprescription of neurolepticdrugs in autistic people to control behavior. They have formed an organization called Autistic People Against Neuroleptic Abuseto counter this phenomenon.

Occupational, auditory, visual therapy

Developmental neurologists have noted that autistic children tend to be hyposensitive and/or hypersensitive to one or several sensory impressions, and that their gross and fine motor skills are usually impaired to varying degrees. These are symptoms consistent with Sensory Integration Dysfunction.

Pediatric occupational therapyhas proven successful in helping autistic children deal more effectively with sensory impressions, use their senses more productively, and become more aware of their bodies.

Auditory therapies include the Tomatisand Berardschools and focus on training the child to use his/her sense of hearing more effectively.

Visual therapy, pioneered by Melvin Kaplan and others, employs prism lenses that distort the child's vision, forcing him/her to use his/her focal vision more productively.

Biomedical intervention

Some parents and medical professionals report improvements in the behavior of autistic children enrolled in restrictive diets, detoxification therapies, and a range of treatments, collectively known as biomedical intervention for autism. These claims are hotly contested by most specialists doctors, some of whom believe that the failure of conventional medicine to address parental concerns, and the meager resources committed to scientific research, has led to autism becoming a magnet for quacksand charlatans.

The premise for biomedical intervention is that certain neurological disorders are caused by environmental shocks that in turn compromise the children's gastrointestinal, immunological and neurological systems. Based on this premise, what is often diagnosed as autism or PDD is a physiologicalsyndrome that can and should be treated.

This point of view is consistent with wider evidence that diet and nutrition can affect behavior generally, but there is no medical literature evidencing claims that autism can be cured. Some of the most prominent advocates of various therapies have autistic children who manifestly display serious behavioral difficulties.

There is plenty of anecdotal evidence to support biomedical intervention - most parents who try one or several therapies report some progress, and there are stories of children who have undergone these programs and become seemingly completely neurotypical, able to return to mainstream education. However, this evidence may be confounded by the dramatic improvements often seen in autistic children as they grow up, with or without such interventions. Hence the need for double-blindstudies regarding treatments.

The use of high doses of vitamin B6with or without magnesiumis very popular among parents. Some studies do validate its effectiveness; including some double-blindones.[7]However, there appear to be some significant risks associated with high doses of vitamin B6, including peripheral neuropathy. Some people argue that vitamin B6 only helps children in the following groups:

Non-coercive approaches

The autism rights movementhas been criticized for promoting 'doing nothing' about autism. While clearly anti-cure, autistic advocates have pointed out that not forcing children to be something they are not is not equivalent to 'letting them do whatever they want', or not educating them at all.

Given how much autistic individuals appear to be prone to stress, anxiety, nervousness and self-doubt, a number of non-coerciveapproaches have been proposed.

The Son-Riseprogram falls into this category, but it has a number of retractors. For one, there is no scientific evidence to validate it, and it is promoted in a way that seems to give a lot of unsubstantiated hope to parents. For example, proponents of the Son-Rise program claim that children will 'decide' to become non-autistic after accepting them for who they are and engaging them in play. The program was started by the parents of Raun Kaufman, who is claimed to have gone from being autistic to totally non-autistic. There are questions as to whether it is true that Raun Kaufman was autistic as a child, and also about the claim that "there is no trace" of his autism now. Overall, the goals of the Son-Rise program (i.e., removing the autism completely) are questioned, as well as the use of locked doors in order to keep children in the play area.

Economist Thomas Sowell, author of The Einstein Syndrome, is a major opponent of any form of "early intervention" for children with certain characteristics (whom he considers wrongly labeled autistic), i.e. those who appear to be intelligent, are able to understand spoken language, and have several engineers or musicians as close family members. His observations are based on experiences with his own son (a late talker) and various anecdotal accounts. Sowell has been criticized for providing false hope, and there are cases he himself documents in his book of parents who followed his advise only to later find out that their children were not simply late talkers.

An approach for dealing with autism which involves reducing stressful sitations, and not trying to force the autistic child to change into someone he is not, is proposed in The Self-Help Guide for Special Kids and Their Parents by Joan Matthews and James Williams. James Williams is an autistic child who, with his mother's help, recounts much of his experiences through examples of possible problems encountered by parents of autistic children. The approach recommends, for example, not forcing the child into a mainstreamed schooling situation too early; trying to understand the problems caused by hypersensitivity and adapting to them; allowing the child to cope with stress by stimming; helping the child develop left-brain thinking; and so on. Joan Matthews is also very much opposed to ABA therapy. This approach is close to something that would be acceptable to autistic advocates. But it also has the danger of giving false hope to parents. What worked well for James Williams may not work equally well for everyone.

The autism rights movement

Some autistic people have started to speak and/or write about their experience. The use of the Internet has made it possible for autistics to present their perspective when they do not have the communication skills to do so offline. Even some mute autistics, such as Jasmine O'Neill, and Amanda Baggs, write well and present a case for greater acceptance of autism. These autistics sometimes say they do not desire a cure, but want more opportunities to use their skills and perceptions. The opinions expressed within the autism rights movement are often very controversial.

The position this movement considers most fundamental is the position that autism is not a disorder at all but simply a different way of being. They believe a cure for autism could destroy the original personality of the autistic person and replace them with a different (neurotypical) person. Websites such as Autistics.org, Aspies for freedomand Graphic Truthpresent this view.

This movement has made ethical challenges to applied behavioral analysis (ABA) and mental institutions. In particular, heated controversy was sparked when Michelle Dawson, an autistic person, autism researcher, and autism rights activist challenged ABA in Canada's supreme court. The movement strives to include autistic adults in autism societies and provide services for autistic adults. They also wish to challenge descriptions of autism that they consider to be pitiful, insulting, and/or incorrect.

Controversies in autism

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