Ethical challenges to autism treatment

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Autism rights movement
Issues
Karen McCarron
Organizations
Aspies For Freedom
Autism Network International
Events
Autistic Pride Day
Philosophy
Sociological and cultural aspects
Neurodiversity · Neurotypical
People
Michelle Dawson · Temple Grandin
Jerry Newport · Amanda Baggs
Jim Sinclair · Donna Williams
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Ethical challenges to autism treatment have been made by people who feel that autism therapies intended to be helpful are actually harmful to autistic people. Some of the people who have made these ethical challenges are autistic people who have been given these treatments (although they do have neurotypical allies who are parents of autistic children). Many of the people making these ethical challenges come from the autism rights movement where this is considered an important issue.

There are parents of autistic children who have responded to these ethical challenges claiming the benefits their children received from these treatments are too important. Many of them also dispute the amount of harm said to be caused by the treatment. [citation needed]

Contents

Ethical challenges to applied behavior analysis

People have made ethical challenges to a popular treatment method known as applied behavioral analysis (ABA). Critics of ABA argue that ABA does not actually improve the skills of autistic people, but instead only teaches them to mimic neurotypical behavior without really understanding the meaning of the social cues they are using. ABA critics also argue that ABA teaches the Autistic person to suppress natural and harmless stimulatory behavior (which is called "stimming" for short). There have also been claims that ABA only "works" because of aversives that often cause posttraumatic stress disorder, anxiety and clinical depression later in life.[citation needed] Since use of ABA has become widespread relatively recently, its long-term consequences and risks have not been studied.

Though ABA has been experimentally verified,[1][1][1][1] ABA critics have noted there have not been any double-blind studies that validate ABA. [citation needed] Some Autistic children develop spoken language and other skills without ABA. Additionally, IQ increases claimed in ABA studies are believed to be meaningless by many due to flaws in intelligence testing.

The Michelle Dawson controversy

One critic of ABA is Michelle Dawson, an autistic individual, autism researcher, and autism rights activist. Dawson published an article[1] challenging the ethical practices and claimed scientific effectiveness of ABA. Dawson has challenged ABA in the Auton v. British Columbia case in the Supreme Court of Canada.

Dawson's article sparked heated controversy in April 2004. Two examples of Dawson's critics are Lenny Schafer[1] and Kit Weintraub [1] who published articles rebutting Dawson, even claiming that she was not truly autistic and was simply faking it. Some of Dawson's critics are parents of autistic children who feel her suggestions neglect the difficulties their children face and ruin their chances of a normal life. Some of Dawson's critics believe that there are ethical problems to what Michelle Dawson is suggesting, because they see it as unethical to refuse to give what they see as important treatment to autistic children. They also believe that Michelle Dawson and her supporters are too different from their children, who have no language skills at all, while Dawson and her supporters can write long articles about their own perspective.

Autism rights activists responded to this by pointing out that some of Dawson's critics at the same time have their children writing articles and speeches (such as those depicted in the Schafer Autism Report) in support of their parents' positions, and that this makes the idea that language skills are the real difference between their children and autistic activists dubious.

Some Autistic people are against the prescription of neuroleptic drugs in autistic people to control behavior. Autistic people are more likely to experience severe side effects, such as death, from neuroleptics and antipsychotics than their neurotypical peers. They have formed an organization called Autistic People Against Neuroleptic Abuse[1] to educate the public about the dangers of prescribing this class of drugs to individuals with autism.

Controversy about ABA among anti-cure advocates

There is some controversy about ABA among people who are critical of ABA and who hold the anti-cure perspective in Autism. There are some with this perspective who see any ABA in any form a violation of an Autistic person's uniqueness and individuality and potentially damaging to the Autistic person's mental health. There are other anti-cure advocates who feel some forms of ABA can be helpful as long as there are no aversives and that it is done to teach skills instead of attempting to make Autistics behave like neurotypicals.

Drug therapy

Main article: Causes of autism
For more details on thiomersal, see Thiomersal controversy.

Organizations that support a cure for autism such as Cure Autism Now believe that autism is not caused by a genetic neurological difference, but rather by thiomersal in the MMR vaccine given to children around age 2 in most countries. This connection between autism and thiomersal has never been scientifically demonstrated. Other groups such as Defeat Autism Now[1] contend that autism is caused by heavy metal toxicity, and use chelation therapy to remove the minerals from the blood (though this also has never been proven to alleviate the symptoms of autism). Evidence supports the theory that autism is genetic and fetus is autistic by the 20-33 day after conception.[1]

There is no drug specifically developed for the treatment of autism but many autistic individuals are prescribed drugs such as selective serotonin reuptake inhibitors (normally an antidepressant) and drugs prescribed to control anxiety. A small percentage of autistic individuals will benefit from ritalin.[citation needed] Autism is a very complex neurological condition and there have been no drugs found that are completely or partially effective in treating all individuals with autism. Individuals with autism have a higher percentage of seizures than found in the population at large, thus many are prescribed drugs to control epilepsy. Some individuals with autism who do not have epilepsy also benefit from these drugs.[1][1]

Members of Autistic People Against Neuroleptic Abuse (APANA)[1] have formed a group to educate the public about the dangers of prescribing neuroleptics to individuals with autism. This group is against the prescription of neuroleptic drugs in order to control the symptoms or behaviors of individuals with autism, who are more likely than their neurotypical peers to experience severe side effects such as death or permanent neurological damage from these medications.[1][1]

Institutional damage

Autism rights activists oppose the damage done to autistics in psychiatric hospitals.

Historic prognosis for permanently institutionalized autistic children

These facts have been claimed about historical autism institutions:

  • It is well known that institutions are not parent substitutes at all; early and/or permanent institutionalisation will harm social and emotional development of any human being. Autistics are not immune to this effect.
  • The routine-seeking traits of autism lend themselves to institutional damage, as many autistics would find living thousands of completely identical days quite easy.
  • Historically, almost all autistics, particularly those severely affected, were permanently institutionalized from an early age because no one knew what was wrong with them or what to do about them.[citation needed] Having such a child was an embarrassment and, in former times, a possible sign of demonic involvement.[citation needed]
  • After decades of institutional damage (with or without the treatments of that era, usually without), it is unlikely for an autistic to learn to speak, to become socialized or to engage in useful work. This fact has given rise to some statistics saying autistics in institutions never improve.
  • The statistics were used to predict institutionalized autistics were doomed never to learn or grow; however the importance of institutional damage was entirely forgotten and led to the statistics-backed over-mediatized belief autistics never learn speech or socialization at all.[citation needed] Many doctors (including a few older autism experts) firmly believe autistics can't learn these things by themselves, or with just parental assistance (e.g., Jessica Park).[citation needed] These researchers tend to disregard the fact that many autistics can and have done so; they may claim such people were misdiagnosed and were never actually autistic.

It is the opinion of autism rights activists that long-term institutionalisation of autistics denies them the right to potentially lead a normal life on their own.[citation needed] They don't believe there is a way to know who will/won't improve or by how much.

There are now a great many well-documented cases of autistics - living in a family, a group home, or independently - who actually taught themselves the verbal and social skills needed to survive.[citation needed] The argument that such people are rare or misdiagnosed is no longer mainstream in either the scientific literature or the media.

IQ tests are usually performed to predict or confirm permanent institutionalisation of patients who seem to have poor intellect. These IQ tests may underestimate the academic potential of an autistic. For example, if sensory oversensitivity causes distraction during the test (such as the noise of a watch timing the test, the aftershave/perfume of the examiner, etc.) or acute neurological discomfort caused by the moment where routine is broken (such as taking the test in the first place, having to walk into an unknown place, etc.).

Currently, there is no way to know which autistic will not be able to acquire verbal and social skills, regardless of the age of the autistic, so autism rights activists do not recommend permanent institutionalisation because they believe it prevents improvement and more often than not causes regression. Autism rights activists believe prognosis is much better in a family than in an institution even at the "lowest" level of functioning.[citation needed]

See also

References


External links


Acknowledgement and Attribution Regarding Sources of Content

Some of the initial content on this page may be incorporated in part from copyleft sources in the public domain including wikis such as Wikipedia and AskDrWiki. Drug information for patients came from the The National Library of Medicine. Infectious disease information may have come from the Centers for Disease Control (CDC). Differential Diagnoses are drawn from clinicians as well as an amalgamation of 3 sources: 1.The Disease Database; 2. Kahan, Scott, Smith, Ellen G. In A Page: Signs and Symptoms. Malden, Massachusetts: Blackwell Publishing, 2004:3; 3. Sailer, Christian, Wasner, Susanne. Differential Diagnosis Pocket. Hermosa Beach, CA: Borm Bruckmeir Publishing LLC, 2002:7 .

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