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Ethical challenges to autism treatment

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Autism rights movement
Infinity
Issues
Ethical challenges to treatment
Controversies about labels
Organizations
Aspies For Freedom
Autism Network International
Philosophy
Neurodiversity · Neurodivergent
Neurotypical
People
Michelle Dawson · Jim Sinclair
Judy Singer

Ethical challenges to autism treatment have been made by people who feel that autism therapies intended to be helpful are actually harmful 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 is too important. Many of them also dispute the amount of harm caused by the treatment.

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 barbaric aversives that often cause posttraumatic stress disorder, anxiety and clinical depression later in life. Since use of ABA has become widespread relatively recently, its long term consequences and risks have not been studied.

ABA critics have noted there have not been any double-blind studies that validate ABA. 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 The Misbehaviour of Behaviourists in January 2004, 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, who published a series of articles In Defense of Behavioral Treatment for Autism in the Schafer Autism Report, and Kit Weintraub, who published an article A Mother's Perspective. Many 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. In addition, autistics who support Michelle Dawson quickly published their own rebuttals to Schafer and Weintraub's articles. Autistics.org published an article In Support of Michelle Dawson and Her Work, claiming that the articles from Dawson's critics do nothing more than attack Michelle Dawson personally and fail to address the points in her article. The article also claims, using examples from the personal lives of the authors, that those of Dawson's critics who claim that autistics who support Dawson's work are very different from their own autistic children are making false assumptions about the abilities of Dawson and her autistic supporters. Dawson's autistic supporters claim their critics are judging their functioning abilities purely on their writing abilities and point out that it is possible for autistics to have good written language skills, but poor oral language skills and difficulty with areas of social functioning and living skills that are not necessarily related to written language skills.

Some neurotypical people might conclude that if Dawson's supporters really have such pervasive difficulties as the low-functioning children, they too should be cured. The people at Autistics.Org claim that even if they had to live their entire lives in negative circumstances, a cure would not be the answer [1].

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.

Arguments from precedent

Homosexuality was listed as a mental disorder in the DSM until it was removed in 1973 mostly due to political activism and controversy. Some ABA critics have noted there are still efforts to "cure" homosexuality through behavior modification. One of the techniques, called reparative therapy, claims a 30% to 70% success rate. Ivar Lovaas, generally considered to be the father of behavioral interventions for autism, is one of the authors of a 1974 article titled Behavioral treatment of deviant sex role behaviors in a male child published in the Journal of Applied Behavioral Analysis [2].

Drug therapy

Many autistic people are against the overprescription of neuroleptic drugs in autistic people to control behavior. They have formed an organization called Autistic People Against Neuroleptic Abuse to counter this phenomenon.

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. Having such a child was an embarrassment and, in former times, a possible sign of demonic involvement.
  • 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. 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). 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. 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. 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 gravely 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.).

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.

See also

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