Controversies in autism

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There is considerable disagreement over the exact nature of autism, however it is generally considered to be a neurodevelopmental condition which manifests itself in markedly abnormal social interaction, communication ability, patterns of interests, and patterns of behavior. It encompasses a wide range of atypical conditions, none of which is well understood. Although there are common and specific physical conditions comorbid to autism spectrum disorders, not all people diagnosed with autism spectrum disorders experience these. The diagnostic criteria, as of 2006, are still generally limited to psychiatric and cognitive evaluation methods with IQ score and a particular patterns of abilities (common to those with autism) featuring strongly in the formal diagnosis of autism and distinguishing it from Asperger syndrome at the time of diagnosis.

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 the long-term prospects of a person with autism because the human mind and nervous system are more plastic at a younger age; therefore, research for possible therapies and treatments is often focused toward children who have been diagnosed early with a spectrum disorder. However, many adults on the autistic spectrum, as well as other interested parties, believe that this emphasis on the problems facing children has resulted in limited research and treatment options for adults with autism.

Today's medical community considers autism to be essentially incurable, or at least to have life-long effects. Meanwhile, judging by the plethora of material on the Internet and elsewhere, many autistic spectrum adults and neurotypical (non-autistic) allies in the autism rights movement do 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 encountered by people with autism may result from prejudice and lack of accommodation from society.

With knowledge being so limited and scientific progress so slow, nearly all conjectures about 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.

Contents 1 The usefulness and accuracy of autism as a diagnosis 1.1 Asperger's Syndrome and autism 2 'Autistic' vs. 'Has autism' 3 Epidemiology of autism 4 Genetics and autism 4.1 Implications of genetic testing 5 Vaccines and autism 5.1 Thimerosal 5.2 MMR triple vaccine 6 Intelligence and autism 7 Prognosis for autistic children 8 Disorder vs. neurodiversity models 9 See also 10 Critique of Autism Genetic Research 11 References

[edit] The usefulness and accuracy of autism as a diagnosis

The 1994 DSM-IV criteria for the diagnosis of autism are the result of several revisions, and consequently the psychiatric community is 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 itself 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 for autism due to the significant variance of symptoms among people with autistic traits, as well as a lack of knowledge about the etiology of the condition. Those with Asperger syndrome may be highly functional cognitively but lack 'social' skills, whereas others with so-called "profound autism" may be non-verbal and deficient in elementary skills. Some autistic people are considered mentally retarded, having low IQs (Intelligence Quotients), while some have been ultimately found to have average or above average intelligence. A minority of people with autism even have narrow, but exceptional autistic savant abilities.

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 depending on each specific person. For example, some parents claim their children recovered with only behavioral approaches, some credit biomedical intervention as the best method for improvement, and others report little or no progress after trying many different approaches. Occasionally, parents claim their autistic children have simply "grown out of it."

There are also those (primarily those on the autistic spectrum 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 personality traits.

[edit] Asperger's Syndrome and autism

Currently, Asperger's syndrome is classified as a separate diagnosis from autism in the DSM-IV, but it is still considered an autism spectrum disorder. The primary distinction between the definitions of autism and Asperger's Syndrome 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 they believe that differences in language acquisition are not significant enough to separate the disorders or that autism and Asperger's have no definitive differences^{[citation needed]}. It is also unclear whether a child with high-functioning autism who learns to speak should have their diagnosis changed to that of Asperger's Syndrome though it should be noted that late speech does occur in a minority of neurotypical children and, in itself, need not be indicative of autism in a child with Asperger's Syndrome who goes on to develop good functional language.

[edit] 'Autistic' vs. 'Has autism'

Many autistics who express their views on the Internet have stated their preference for the word autistic to be used as both an adjective and a noun; they dislike the politically correct person-first terminology. Autistic author, Donna Williams has written about this group as culturalists , distinguishing them from curists who see autism as a condition requiring cure. There are, however, moderates who prefer to think of treatment and management of extreme functioning issues in autism rather than seeing everything as either culture or cure.

Some persons with Asperger's syndrome prefer to be called Aspergerian or aspie. Others with Asperger's Syndrome prefer to refer to themselves collectively as autistics, preferring to see themselves as part of one collective spectrum rather than having a condition different or separable from autism in general.

Person-first terminology is preferred by many with medical conditions, such as AIDS or epilepsy, where it may serve to remove some of the stigma of these illnesses. Many in the autistic community, including some persons who are considered to be severely autistic or low-functioning, feel that to use person-first language conveys the impression that autism is another such disease, something that can and should be cured. These autistics feel that autism is an integral part of their identity, that the person and the autism cannot be separated, and that proposing the removal of autism is akin to proposing death for them.

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 the autism of those they live with is an illness, that autism is not part of the person, and should be removed or cured. Some others in the autistic community who dislike being autistic and wish they could be made non-autistic, May also to prefer person-first terminology, as they do not want to identify autism as an integral part of themselves.

Person-first terminology remains the preferred form in most clinical literature about autism.

[edit] 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^{[citation needed]} that if the incidence is rising, then environmental factors play a greater role; if it is simply being reported more often, genetics deserves more attention. One theory, particularly associated with Simon Baron-Cohen, suggests that increased social mobility and assortative mating may lead to the genetic amplification of autistic traits.

Anecdotal reports from school districts and physicians lend 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, which may indicate a major societal problem. In the United States, Centers for Disease Control (CDC) have vacillated between the latter two figures. In January of 2004 the CDC sent out an autism alarm to all pediatricians stating that they believed that 1 in 166 children had an autism spectrum disorder and as common as one in six now suffered from a neurodevelopmental or behavioral disorder. (Others have quoted these figures as high as 1 in 40 for autism and one in three for the neurodevelopmental or behavioral disorders.)

Others point out that several factors are likely to cause increased reporting. First, some say that 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, creates an incentive to be inclusive in the diagnosis. Second, the last few decades have seen a greater awareness of autistic traits among pediatricians and other medical specialists, and it is surmised that some children who were previously diagnosed as retarded, or as having a psychotic disorder are now diagnosed as autistic or having PDD. Autism was once believed to be a type of childhood schizophrenia.^{[citation needed]}

It will take time to resolve these diagnostic prevalence issues. As previously mentioned, there is no definitive, standardized way to diagnose autism, whether in past, present, or future incidences. There are important implications from this controversy because the answer will guide both the allocation and magnitude of research, legal action, and therapy in the future.

[edit] Genetics and autism

There is evidence that autism has a genetic component, and ongoing research focuses on finding the biomarkers that determine autistic phenotypes. However, 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 neurotypical parents, which suggests that a single gene is not likely the cause. The spectrum of autistic disorders is notable for its significant gender disparity, with the incidence of autism in males greatly exceeding the incidence in females. A 1994 study estimated the ratio at three males to one female, while a 1982 Japanese 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 the gender disparity has been suggested to add credence to the theory that mercury plays a role in the etiology of autism.^{[citation needed]}

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 brain function, are strongly associated with autism. This find 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.

[edit] 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 Syndrome which points in this direction. Autism rights advocates believe this will be akin to genocide and, furthermore, that the impact of such an event on the human species as a whole could be very significant, arguing that common pro-life rhetoric about the potential for geniuses to be aborted might be more persuasive if people such as Albert Einstein and Isaac Newton were, as some have claimed, autistic.

[edit] Vaccines and autism

In the late 1990s, controversial hypothesis arose that linked childhood vaccinations to autism. The claim was that the mercury used in vaccinations causes regressive autism.

[edit] Thimerosal

Main article: Thimerosal controversy

[edit] MMR triple vaccine

Main article: MMR vaccine

Main article: Vaccine controversy#The MMR controversy

[edit] 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 IQ testing, 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, as with neurotypical children, children with autism may simply get better at taking IQ tests (the so-called practice effect).

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

• Some studies suggest that gifted children are more than twice as introverted as their peers.^[1]
• Gifted children have been characterized as having obsessive interests, preferring to play alone, and enjoying solitude. They are also said to have prodigious memories and show intense reactions to noise, pain and frustration.^[2]
• According to some reports, gifted children have a higher-than-average propensity to allergies^[3]

These findings have led to speculation that high intelligence and autism are related. Autistic author Temple Grandin speculates that genius itself "may be an abnormality."^[4]

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

[edit] 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 neurotypical children behave, either for no apparent reason or from a few simple alterations in diet.^{[citation needed]} Some become mainstreamed after years of hard work and intensive training. Some develop slowly, but never lose their diagnoses. 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.

While some people see early intervention as crucial for autism, the prognosis is also less certain 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 people with autism, like those with learning disabilities, have been known to cognitively develop throughout their lives.

There is broad consensus in the medical community to the effect that autistic behaviors can be improved through training and through medical or educational interventions, though there is apparently no consensus on treatment regimes and objectives.

[edit] Disorder vs. neurodiversity models

There is some controversy about which model of autism is correct: the model that autism is a disorder that creates suffering or the model that autism is a healthy variation in neurological hardwiring. In addition, there is controversy about whether or not autism should be cured.

The model that says autism is a healthy variation in neurological hardwiring is sometimes called the neurodiversity or anti-cure perspective by its proponents and is the basis of what some call the autism rights movement. Jim Sinclair, a proponent of this model, argues that autism colors every aspect of an autistic person's existence and that to cure an autistic person of autism is equivalent to replacing the autistic person with a different neurotypical person^[5]. Groups like Aspies for Freedom and Autism Network International advocate the anti-cure perspective.

The disorder model, on the other hand, sees autism as something that creates significant suffering and advocates a cure for autism. Lenny Schafer, a proponent of the disorder model of autism, argues that a cure for autism will free autistic children from suffering from the disabilities of autism and will give them what it takes to obtain happiness^[6]. Organizations like Cure Autism Now and Autism Research Institute advocate and research treatments and a potential cure for autism. Autism therapies exist to alleviate aspects of autism that the therapies' proponents argue create suffering.

[edit] See also

• List of autism-related topics
• A-CHAMP
• Autism
• Autism rights movement
• Aspies For Freedom
• Autistic culture
• Chelation therapy
• Generation Rescue
• Mark Geier
• Richard Deth
• Cheri Florance

[edit] Critique of Autism Genetic Research

• Joseph, J. (2006). The Missing Gene: Psychiatry, Heredity, and the Fruitless Search for Genes.New York: Algora. (Chapters 7 & 11)

[edit] References

1. ^ www.a-gifted-child.com
2. ^ www.jewishworldreview.com
3. ^ www.sengifted.org
4. ^ www.onlineparadigm.com
5. ^ Sinclair, Jim. "Don't Mourn for Us." 1993. http://ani.autistics.org/dont_mourn.html. Page accessed: 22 January 2007.
6. ^ Schafer, Lenny. "Commentary: Somewhere over the Spectrum, Part 3." Schafer Autism Report. 12 January 2005 http://lists.envirolink.org/pipermail/sareport/Week-of-Mon-20050110/000350.html Page accessed: 22 January 2007.