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There is considerable disagreement over the exact nature of autism, which is not well understood. The medical community considers autism to be a severe disorder with life-long effects. Many autistic adults and neurotypical (non-autistic) allies in the autistics' rights movement do not consider autism to be a disorder at all but a unique way of being, and believe the difficulties associated with autism are the result of prejudice and lack of accommodation from society.
Scientists and practitioners who believe autism is a medical condition have not yet settled on the cause, prognosis, or correct treatment of autism. There is, on the other hand, consensus that early intervention makes a significant difference for an autistic person's long-term prospects. The human mind and nervous system are more plastic at a younger age, and there is a prevailing sense of urgency around treating autistic children.
With knowledge being so limited, nearly all aspects of dealing with autism are subject to heated debate. Parents of autistic kids face a bewildering set of choices and attendant uncertainty. Some of these controversies are described below.
These controversies do not only involve parents, but also autistic people and anyone who knows them. Many autistic people (and some non-autistic supporters) believe that the emphasis on pediatric autism leaves little support for autistic adults.
The usefulness and accuracy of autism as a diagnosis
The DSM-IV criteria for the diagnosis of autism is the result of several drastic revisions, and the psychiatric community differs on whether the condition should be "clumped" along a spectrum or "split" into multiple distinct disorders that have similar symptoms. Research and clinical experience further suggests that autism is not a psychiatric but a neurological disorder. Pervasive developmental disorder has emerged as a descriptive term for the cluster of disorders that includes autism.
The issue is complicated by the fact that autism can not be ascertained with clinical tests; all physicians employ behavioral observations to guide their findings. In addition, there is significant variation among children with autistic traits. Those with Asperger syndrome may be highly functional and lacking in limited social skills, whereas others with "profound autism" may be non-verbal and deficient in the most elementary self-help skills. Some autistic people are mentally retarded; others have average or above average intelligence and/or are autistic savants. A wide range of conditions comorbid to autism spectrum disorders strengthen the perspective that autism is a common set of symptoms for a wide range of underlying disorders.
This is not just an academic issue. Treatment strategies and choices are based on a conviction of what needs to be changed. Different parents have had hugely divergent experience with different treatment approaches. Some claim their children have recovered with only behavioral approaches; others claim to have cured their children with biomedical intervention; others report little progress with either.
Finally, there are also those who reject the premise that autism is a disorder that should be fixed. In their view, a diagnosis amounts to a judgment of non-conformity that is followed by efforts to "fix" what essentially are personality traits.
Asperger's and autism
Currently, Asperger's is classified as a separate diagnosis in the DSM-IV but Asperger's is considered an autism spectrum disorder. The main difference between the definitions for autistic disorder and Asperger's syndrome in the DSM is that autism involves a speech delay and Asperger's syndrome does not. There are many people who believe autism and Asperger's should not be given separate labels in the DSM only because of a language delay and there are some who believe autism and Asperger's have no differences at all.
There is uncertainty and controversy whether the incidence of autism is actually increasing, or if there simply is an increase in the number of reported cases. If the actual incidence is rising, the implication is that environmental factors play a greater role; if it's being reported more often, genetics deserve more attention.
Anecdotal reports from school districts, physicians, and other practitioners strongly support the view that the incidence is rising, and some studies appear to support this as well. Some believe the incidence has grown from about 1 in 5000 to 1 in 150 to 400 in the last few years and believe we are facing a major societal problem.
Detractors point out that several factors are likely to cause increased reporting. First, the broadening definition of autism (discussed above) 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 specialties. It is surmised that some children who were previously diagnosed as retarded, or as having a psychotic disorder, are now diagnosed as autistic, or with pervasive developmental delay. Autism was once believed to be a type of childhood schizophrenia.
It will take time to arrive at a resolution to this issue. 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 markers that determine autistic phenotypes. But there is significant disagreement whether genetics are a contributing or a decisive factor. For example, recent studies on twins by Greenberg (2001) and Betancur (2002) do not support twinning as a substantial risk factor in the etiology of autism.
There is a trend toward viewing genetics as contributing factor, although the fact remains that most autistic children have neurotypical parents. This group of 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 male-female ratio at 3:1 while a 1982 Japanese study indicated a ratio of 9:1. There are some, however, who speculate that autism occurs equally in both sexes, and that males are simply more likely to be diagnosed than females.
Vaccines and autism
In the late 1990s, a controversial theory arose linking childhood vaccinations to autism. The theory states that early childhood vaccinations cause a shock to a child's immunological, neurological, and gastrointestinal systems. These claims are based on several factors, including the presence of thimerosal as well as the immunogens themselves.
Until a few years ago, some formulations of vaccines contained thimerosal, a mercury-based compound for purposes of preserving multi-use vaccine containers. In sufficient quantities, mercury is neurotoxic, and thus it is tightly regulated by the EPA. The vaccine for diptheria and pertussis (DTP) in particular is typically administered to children under the age of 2, and several formulations of this vaccine also contained thimerosal. One theory was that children who became autistic subsequent to vaccination lacked sufficient quantities of an enzyme necessary to process thimerosal.
The purported immunological link of vaccines (particularly the MMR vaccine) to autism came to the forefront when in 1998, Wakefield and colleagues (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=9500320) reviewed reports of children with bowel disease and regressive developmental disorders, mostly autism, in a small sample of 12 children. Although the study had weaknesses (such as small sample size, and no use of healthy controls), this study and similar studies garnered media attention and popular support from families with autistic children and sympathetic individuals.
In response to this controversy, a number of subsequent studies with larger sample sizes were researched in many developed nations. The vast majority of those studies showed no statistical correlation between the use of vaccines and autism.
In 2004, 10 of the 13 authors of the original Wakefield study retracted the paper's interpretation, stating that the data were insufficient to establish a causal link between MMR vaccine and autism.
Despite the lack of evidence that autism and thimerosal-containing vaccines are related, thimerosal-free formulations of the DTP vaccine are now standard.
A number of advocates continue to support the claim that there is a causal link between early childhood vaccines and autism. They contend that studies are flawed or inconclusive and that key information was withheld from the public. Thus, the link between autism and vaccines still remains a controversial and debated topic, and probably will continue to remain a controversy until a definitive cause for autism is found.
Prognosis for autistic children
Current perspectives
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 as complete neurotypicals, from a few simple alterations in diet. Some apparently become mainstreamed after years of hard work and constant training. Some develop slowly, but never become typical. And there are a few who never move beyond a level of functioning that society perceives as "low".
It seems paradoxical that 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.
Everyone in the medical community agrees that autism is treatable through medical or educational intervention, 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."
Discredited approaches
The Bruno Bettelheim hypothesis 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.
Behavioral interventions
Several schools of thought exist about behavioral interventions to treat autism.
The most prominent is Lovaas/applied behavior analysis (ABA), which involves training autistic children through trials and reinforcement of limited tasks that grow more complex over time. 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.
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 use of drugs for autistic patients is widely disputed. While anti-seizure medication is indicated for some children with seizures, many parents are vehemently opposed to using psychopharmacology to treat their children. They point out that autistic people are not psychotic, particularly anxious, or depressed. Many autistic people themselves are against the overprescription of neuroleptic drugs in autistic people to control behavior. They have formed an organization called
Autistic People Against Neuroleptic Abuse (http://www.dinahm.pwp.blueyonder.co.uk/) to 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 therapy has 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 Tomatis and Berrard schools 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
A small but growing number of parents and medical professionals claim to have successfully treated autistic children by pursuing restrictive diets, detoxification therapies, and a range of alternative medical treatments, collectively known as biomedical intervention.
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 physiological syndrome that can and should be treated.
This point of view is consistent with studies on nutrition and children that show that healthy diets reduce behavioral problems with children and adolescents. It also provides an etiology to the growing incidence of autism and other developmental disorders, including ADHD.
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.
Many autistic people have at least some language skills, and have started to speak and/or write for themselves 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, still write very well and present a compelling case for societal acceptance of autism. These autistics do not desire a cure, but rather to be given opportunities to use their unique skills and perceptions in useful ways. The opinions expressed by this movement are 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 would destroy the original personality of the autistic person and replace them with a different (neurotypical) person. Websites such as Autistics.org (http://www.autistics.org), Aspies for freedom (http://www.aspiesforfreedom/) and Graphic Truth (http://www.graphictruth.com/) present 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. The issues and controversies presented by this movement are discussed in more detail in the autism rights movement.
See also
External links
Autistics' rights
Internet autistics' rights campaigns
In the early 2000s, activist campaigns started over the Internet.
- In April 2000, Autistics.org (http://www.autistics.org) hosted an online counter-rally called "Hear Our Voices" (http://www.autistics.org/library/reply.html) to protest an autism rally in Washington D.C. called "Hear Their Silence" that they disagreed with.
- In 2004, a Autistic Adults Picture Project (http://www.isn.net/~jypsy/AuSpin/a2p2.htm) was started in response to similar projects started by parents that only include pictures of children.
- In September 2004, the "Our Names are Autism Too" (http://www.isn.net/~jypsy/AuSpin/ournames.htm) is a campaign that protested an article titled "My Name is Autism" (http://www.asohalton.org/My%20Name%20is%20Autism.pdf) that presented a view autistics' rights activists found insulting.
- In October 2004, the Signatures of Intolerance (http://www.isn.net/~jypsy/AuSpin/sig.html) campaign was started over controversy surrounding ABA in Canada.
- In 2004, the Petition to Defend the Dignity of Autistic Citizens (http://www.neurodiversity.com/mothers_for_dignity.html) was started to protest the use of insults to describe autism (such as "mad child disease").
Groups for parents of autistic people
Research organizations on autism
Behavioral therapies for autism
Biomedical intervention resources
Sites on vaccination and autism
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