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Should we welcome a cure for autism? A survey of the arguments

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Abstract

Substantial research efforts have been devoted to developing a cure for autism, but some advocates of people with autism claim that these efforts are misguided and even harmful. They claim that there is nothing wrong with people with autism, so there is nothing to cure. Others argue that autism is a serious and debilitating disorder and that a cure for autism would be a wonderful medical breakthrough. Our goal in this essay is to evaluate what assumptions underlie each of these positions. We evaluate the arguments made on each side, reject those that are implausible and then highlight the key assumptions of those that remain.

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Notes

  1. This normative question can be seen as a mid-point between the broader public policy question of whether we should actively pursue research in finding a cure and the narrower normative question of whether it would be good news that the prevalence of autism was decreasing (perhaps dramatically). The former question is very complex and there is no point in addressing it unless we first know we should welcome a cure. The latter question involves just a subset of the arguments that we address in this essay.

  2. We would be thrilled if leaders of nations did not have the choice to commit genocide.

  3. This category includes cases of diffuse harm, where the choice leads to broader social harms (e.g., economic inefficiency, environmental harm) in which it is difficult to identify who is harmed.

  4. For example, seat belt laws are paternalistic, but they do so much good with such minimal intrusion on liberty that most people agree they are justified.

  5. Qualities such as IQ are in dispute because of the obvious difficulty in measuring the IQ of a non-verbal individual (as is the case with some PWA), using a standardized test. While many PWA are labeled with mental retardation (IQ below 70 and deficits in adaptive skills), there is evidence that many of these labels are wrong, due to the difficulty in assessing intelligence in a child with little speech, imitation ability, and poor direction-following (Cohen, 2002).

  6. The internal/external distinction isn’t always obvious. Stereotypic behavior could be either, depending on whether it interfered with accomplishing tasks or simply made others think of the PWA negatively.

  7. There are surely vexing ethical questions about various treatments that aim at a cure (or its approximation), but it isn’t worth discussing these until we know that curing is a good goal.

  8. If more of these considerations seem to apply to a particular developmental stage, then this does not imply that we are making any assumptions about when the cure would be used.

  9. Put simply, the justification for limiting people’s liberty to kill people isn’t primarily that it is offensive or immoral. These two types of justification only come to the fore of the discussion when the others don’t work.

  10. For a discussion of the problem with moral appeals to what is natural or unnatural, see David Hume’s Treatise on Human Nature, book III, part 1, section 2. For a discussion of why criticisms based on ‘playing God’ amount to much the same thing, see Rachels (2004, chap. 4).

  11. We use the masculine pronoun as the gender neutral when discussing PWA, since most PWA are male. If the paper were about breast cancer, we would do the opposite.

  12. Or, similarly, is it offensive or immoral for a person without autism to make himself into a person with autism. If not, then it is hard to see how going the other way could be (since we are now setting aside issues of harm).

  13. Arguments against treatments that don’t work are irrelevant. No one would welcome mere snake oil. But even a real cure via magic wand could (in principle) make a person worse off (because of the fact that they no longer have autism).

  14. Because we have defined curing autism as eliminating ‘internal’ obstacles that PWA experience, it might seem as if we have stacked the deck. But there is no direct relationship between a lack of obstacles and well-being. Indeed, a complete lack of obstacles would surely make achieving a good life very difficult. So, some PWA could be worse off after being cured. This would likely be quite rare, though this is an empirical question that we won’t tackle here.

  15. This criticism has been levied especially against parents seeking a cure, who opponents say are seeking to replace the child with autism with a different child, who does not have autism. Below are two examples of this, written by PWA. Jim Sinclair (1993) writes: “What the rest of the world needs to know about autism is that it’s not something that can be separated out from the person, it’s part of the person, and so you cannot meaningfully say I love my child but I hate the autism” (Shapiro 2006). Baggs (2008)writes:

    Parents write messages on the Internet saying they wish they had a normal child—one who speaks more “normally”, or has more “normal” social relations, or who doesn’t do such “odd” things … The depth of pain that this causes an autistic reader is inexpressible. It is a deep denial of who we are, and a rejection by the same people who say they love us and want to help us. It effectively tells us, “You do not deserve to exist. Your existence causes pain. You should be someone different.”

  16. Thomson (1997) defends a version of the bodily identity theory. The soul theory has been defended by many authors, from Plato to Aquinas to Descartes, but is not popular among contemporary philosophers. Shoemaker (1984) is one of many defenders of psychological continuity as the criterion for personal identity.

  17. This will still be a defeasible justification. Other kinds of justifications may override or outweigh it. More importantly, this is a very heavy set of assumptions, making for a weak argument.

  18. “Neurotyptical” is used by some people who write about autism to refer to people not on the autism spectrum.

  19. Salt is just a placeholder for any environmental factors with a causal relationship to autism, which are yet unknown. Autism is likely caused by a combination of genetic and environmental factors. The environmental factors are unlikely to be as simple as salt consumption, but this does not affect the argument.

  20. Regarding basing normative arguments on what is natural, see David Hume’s Treatise (as noted above). Moreover, it would seemingly be quite odd for disability rights advocates to put normative weight on what is natural.

  21. The major danger is a disparity between appearance and reality. If people believe the cure is nearly perfect, but it actually has major drawbacks, then there might be an unjustified decreased motivation to accommodate. Individuals may be willing to pay for accommodations (e.g., sign language interpreters) for those who have no choice in being deaf, but unwilling to pay if these people could be made to hear at the mere wave of a wand. Imperfect cures (e.g., cochlear implants) are different, and society is likely more willing to pay for accommodations if this is the alternative.

  22. This is particularly true if the cure would be free to those making the decision (e.g., covered by health insurance), but less likely if it was costly. This point was articulated by an anonymous reviewer.

  23. This objection to the DMA assumes that there is no significant moral difference between people who choose to make themselves disabled and people who choose not to cure their disability when an ideal cure exists. If, 1) there is no significant moral difference between choosing to induce a disability and choosing not to cure one, and 2) it’s reasonable to be unwilling to provide accommodations to those who actively choose to need them, then it’s also reasonable to be unwilling to provide accommodations to those who passively choose to need them. But, if there is a significant moral difference between inducing and not curing, then people are less likely to withhold accommodations because they will presumably see this difference and not make the inference that withholding accommodations is appropriate.

  24. Deontologists are in the same boat as consequentialists here. The question is about whether to welcome the existence of a procedure. The existence of the procedure may invite people to act immorally, but you (the potential welcomer) aren’t doing anything wrong. A strict deontologist cannot DO wrong to create more good in the world, but she can welcome the existence of something that will create more good in the world, even if that thing will invite some people to do immoral actions. This is true even if the deontologist (implausibly) judges the amount of good in the world solely based on the number of immoral actions done.

  25. Barnbaum (2008) agrees and argues extensively that the community of PWA do not constitute a culture.

  26. There are certainly numerous websites, internet discussion groups and even some annual gatherings of PWA. For example see: Autreat website: http://ani.autistics.org/autreat.html; Autscape website: http://www.autscape.org/.

  27. The most famous of these is very likely Temple Grandin, who is largely responsible for significant changes in how livestock are handles, but others exist who are less well known. If Grandin were diagnosed today, she might be diagnosed as having Asperger’s syndrome, but there are many examples of exceptional PWA in Biklen et al. (2005).

  28. Such ignorance is much less likely, but not impossible, for the individuals (e.g., pre-cogs) themselves.

  29. This argument is only plausible if a cure does no good for the PWA. Just as it would be ethically suspect to put a PWA through a treatment that harmed him for the benefit of family members, it would be equally ethically suspect to withhold a treatment that would benefit him for the benefit of family members.

  30. While the presence of any additional person in a family will have obviously an impact, some features of that person will themselves have a major impact while others will not. Eye color will not have a major impact, but autism will.

  31. Justifying paternalistic restrictions on liberty generally requires overwhelming evidence of harm. Even with this (e.g., seat belt laws), the restrictions meet considerable resistance. This argument is unlikely to meet this high bar.

  32. The conclusion that cures for all disabilities should be shunned could only be justified by ideology. Reflective equilibrium (Rawls 1971) does not permit our adopting the moral intuition that shunning all these is correct.

  33. “Quality of life” is meant in the standard sense used in medical ethics, as a measure of how well someone’s life is going. Disputes over the scale to use or how to measure it are irrelevant. We just assume that everyone’s life can get better or worse, and that it is good for them to be better. Whether quality of life is subjectively or objectively determined is also irrelevant. Even on the subjective interpretation, one can be mistaken about what will make one better off.

  34. Philosophers and economists employ the idea of quality of life differently than psychologists and disability service providers, but everyone needs this idea and agrees that it is important to improve people’s quality of life. See Nussbaum and Sen (1993) for a background. We do not assume that anyone can precisely measure quality of life.

  35. We are not infallible judges of what will improve our lives.

  36. One might object that it is unfair to compare a perfect cure with an imperfect set of accommodations. But if I am trying to decide if in principle I should welcome winning a million dollars, I compare what life is likely to be with the million, to what life is likely to be without it. In assuming a perfect cure, we are not assuming that there won’t be any bad consequences, just that the cure doesn’t come with bad strings attached (e.g., risky side effects to an operation).

  37. Before balancing, the arguments’ assumptions must be checked. They are valid and plausible, but perhaps unsound.

References

  • Baggs, A. 2008. The World I Want to Live In. Downloaded May 21, 2008 from: (Autistics.org The Real Voice of Autism) http://www.autistics.org/library/want.html.

  • Barnbaum, D. 2008. The ethics of autism: Among them, but not of them. Indiana: Indiana University Press.

    Google Scholar 

  • Benn, P. 1999. Freedom, resentment, and the psychopath. Philosophy, Psychiatry, & Psychology 6: 29–39.

    Google Scholar 

  • Beveridge, C.J. 2001. I am a father. In You will dream new dreams. Inspiring personal stories by parents of children with disabilities, ed. S.D. Klein, and K. Schive, 81–84. New York: Kensington.

    Google Scholar 

  • Biklen, D., R. Attfield, L. Bissonnette, L. Blackman, J. Burke, A. Frugone, T.R. Mukhopadhyay, and S. Rubin. 2005. Autism and the myth of the person alone. New York: New York University.

    Google Scholar 

  • Bondy, A., and L.A. Frost. 2001. The picture exchange communication system. Behavior Modification 25(5): 725–745.

    Article  PubMed  CAS  Google Scholar 

  • Cohen, D. 2001. Our journey. You will dream new dreams. Inspiring personal stories by parents of children with disabilities, 85–87. New York: Kensington.

    Google Scholar 

  • Cohen, N. 2008. Genetically engineering a ‘perfect’ baby. April 15, 2008 episode of National Public Radio’s show—Talk of the Nation.

  • Cohen, S. 2002. Targeting autism (updated edition). Los Angeles: University of California Press.

    Google Scholar 

  • Dawson, M. 2004. The misbehaviour of behaviourists: Ethical challenges to the autism-ABA Industry. http://www.sentex.net/~nexus23/naa_aba.html. Accessed on August 5, 2008.

  • Donnelly, J.A., J.P. Bovee, S.J. Donnelly, L.K. Donnelly, J.R. Donnelly, M.F. Donnelly, A.S. Walter, and M.R. Callaghan. 2000. A family account of autism: Life with Jean-Paul. Focus on Autism and Other Developmental Disabilities 15(4): 196–201.

    Article  Google Scholar 

  • Durand, V.M. 1993. Problem behaviour as communication. Behaviour Change 10: 197–207.

    Google Scholar 

  • Feinberg, J. 1984. The moral limits of the criminal law. Vol. 1, harm to others, vol. 1. New York: Oxford University Press.

    Google Scholar 

  • Fenton, A., and T. Krahn. 2007. Autism, neurodiversity, and equality beyond the ‘normal’. Journal of Ethics in Mental Health 2(2): 1–10.

    Google Scholar 

  • Filipek, P.A., P.J. Accardo, G.T. Baranek, E.H. Cook Jr., G. Dawson, B. Gordon, J.S. Gravel, C.P. Johnson, R.K. Kallen, S.E. Levy, N.J. Minshew, B.M. Prizant, I. Rapin, S.J. Rogers, W.L. Stone, S. Teplin, R.F. Tuchman, and F.R. Volkmar. 1999. The screening and diagnosis of Autistic Spectrum Disorders. Journal of Autism and Developmental Disorders 29: 439–484.

    Article  PubMed  CAS  Google Scholar 

  • Grandin, T., and M. Scariano. 1996. Emergence: Labeled autistic. New York: Warner Books.

    Google Scholar 

  • Grandin, T. 2006. Thinking in pictures: My life with autism (expanded edition). New York: Vintage.

    Google Scholar 

  • Harmon, A. 2004. How about not ‘curing’ us, some autistics are pleading. The New York Times.

  • Hobson, R.P. 1993. The emotional origins of social understanding. Philosophical Psychology 6: 227–249.

    Article  Google Scholar 

  • Jary, D., and J. Jary. 1991. The Harper Collins dictionary of sociology. New York, NY: Harper Collins.

  • Kennett, J. 2002. Autism, empathy and moral agency. Philosophical Quarterly 52(208): 340–357.

    Article  Google Scholar 

  • Klein, S.D., and K. Schive (eds.). 2001. You will dream new dreams. Inspiring personal stories by parents of children with disabilities. New York: Kensington.

    Google Scholar 

  • Krahn, T., and A. Fenton. 2009. Autism, empathy and questions of Moral Agency. Journal for the Theory of Social Behaviour 39(2): 145–166.

    Article  Google Scholar 

  • Lovaas, O.I. 1987. Behavioral treatment and normal educational functioning in young autistic children. Journal of Consulting and Clinical Psychology 55: 3–9.

    Article  PubMed  CAS  Google Scholar 

  • Naseef, R. 2001. Special children, challenged parents: The struggles and rewards of parenting a child with a disability. Baltimore, MD: Brookes Publishing Company.

  • Nussbaum, M., and A. Sen (eds.). 1993. Quality of life. New York, NY: Oxford University Press.

    Google Scholar 

  • Nussbaum, M. 2007. Frontiers of justice: Disability, nationality, species membership. Cambridge, MA: Belknap Press.

    Google Scholar 

  • Rachels, J. 2004. The elements of moral philosophy. New York, NY: McGraw Hill Humanities.

    Google Scholar 

  • Rawls, J. 1971. A theory of justice. Cambridge, MA: Harvard University Press.

    Google Scholar 

  • Roberts, D., M. Major, and J. Brady 2008. Controversial new movement. Autistic and proud. ABC News, available at: http://abcnews.go.com/GMA/OnCall/story?id=5033594&page=1. Retrieved August 6, 2008.

  • Schrandt, J.A., D.B. Townsend, and C.L. Poulson. 2009. Teaching empahty skills to children with autism. Journal of Applied Behavior Analysis 42(1): 17–32.

    Article  PubMed  Google Scholar 

  • Sinclair, J. 1993. Don’t mourn for us. Our Voice (Autism Network International Newsletter). Retrieved May 3, 2011, from: http://www.autreat.com/dont_mourn.html.

  • Sinclair, J. 2005. Autism Network International: The development of a community and its culture. Retrieved May 3, 2011, from: http://www.autreat.com/History_of_ANI.html.

  • Saner, E. 2007. It is not a disease, it is a way of life. The Guardian. Available at: http://www.guardian.co.uk/society/2007/aug/07/health.medicineandhealth. Retrieved August 6, 2008.

  • Senator, S. 2005. Making peace with autism. Boston, MA: Trumpeter Books.

  • Shapiro, J. (2006). Autism movement seeks acceptance, not cures. (NPR). June 26, 2006. Available at: http://www.npr.org/templates/story/story.php?storyId=5488463. Retrieved August 6, 2008.

  • Shoemaker, D. 2007. Moral Address, Moral Responsibility, and the Boundaries of the Moral Community. Ethics: An International Journal of Social, Political,and Legal Philosophy 118(1): 70–108.

    Google Scholar 

  • Shoemaker, S. 1984. Personal identity: A materialist’s account. In Personal identity, ed. Sydney Shoemaker and Richard Swinburne. Oxford: Blackwell.

    Google Scholar 

  • Sigafoos, J., and B. Miekle. 1996. Functional communication training for the treatment of multiply determined challenging behavior in two boys with autism. Behavior Modification 20(1): 60–84.

    Article  PubMed  CAS  Google Scholar 

  • Thomson, J.J. 1997. People and their bodies. In Reading Parfit, ed. J. Dancy. Oxford: Blackwell.

    Google Scholar 

  • Treffert, D.A. 2009. Savant Syndrome: An extraordinary condition. A synopsis: past, present and future. Philosophical Transactions of the Royal Society B: Biological Sciences 364: 1351–1357.

    Article  Google Scholar 

  • Trivedi, B. 2005. Autistic and proud. New Scientist 186: 36–40.

    Google Scholar 

  • Wertheimer, A. 1987. Coercion. Princeton: Princeton University Press.

    Google Scholar 

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Eric Barnes, R., McCabe, H. Should we welcome a cure for autism? A survey of the arguments. Med Health Care and Philos 15, 255–269 (2012). https://doi.org/10.1007/s11019-011-9339-7

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