The Ethics of Autism: Among Them, but Not of Them
That famous saying goes, "We've come a long way, baby!" When I first started to practice in psychiatry back in 1978, there wasn't much that could be done to help autism, a disorder erroneously thought to be caused by "cold" mothering. We now know enough about genetics to think about the possibility of someday preventing autism. We also know about providing some degree of useful treatment for the disorder, which has prompted the author of this book to ask the following provocative question: If a "cure" for autism became available, should we use it? Although I have been writing ethics columns and heading ethics committees for years now, I never encountered a question quite like this one.
Perhaps because the book was written by a philosopher, much of it might not seem relevant or interesting to the everyday clinician. However, there are brief first-person accounts, usually of successful adaptations, interspersed throughout the philosophical discussions that help make some of the conundrums come alive.
Although this is an oversimplification for such a rich discussion, the core deficit of autism is theorized in this volume as an inability to understand and empathize with other people, as well as a corresponding lack of being able to understand oneself. This may be some kind of failure of what we now call the "mirror neurons" of the brain. Given the nature of these differences from persons without the disorder, the author makes a fascinating and convincing case that autism challenges our basic conception about what it means to be human, or at least a social human. Consequently, whether those with autism can understand society's basic moral standards and expectations is debatable. Informed consent then becomes questionable, including participation in research studies or treatment, especially as adults.
By the end of the book, the author seems to conclude—and I would agree—that very early intervention should be provided not only to reduce later morbidity but also so that the person with autism will arrive at a comfortable identity in his or her development. Should a "cure" become available, adults with autism, unless they have major behavioral problems, may fare best with their usual treatment, both because they often seem satisfied and because drastic change would be an unimaginable challenge to their identity.
However, there may be an even larger ethical conundrum. In passing, the author mentions that about 10% of people with autism have special talents in, for example, music, painting, or spatial configurations. Beyond the obvious benefit of such gifts in themselves, there may be a broader implication here, in that some researchers feel these gifts may someday be accessible to persons who do or do not have autism. Therefore, "curing" autism more generally, if and when that becomes possible, could close a window for potentially learning enough to access those abilities more readily for the general population.
Probably because the author is not a clinician, the pain to families and others significant in the life of persons with autism is relatively ignored and underplayed, as are the enormous social and financial costs involved in trying to integrate persons with autism into society. There are also some broader implications that may be of interest to clinicians. One is the ethical consideration of drawbacks of treatment if it also reduces something valued. That question comes up frequently in regard to those who are creative and whether their creativity may be positively connected to a hypomanic or mild depressive state. In my practice this question often comes up with treatment of attention-deficit hyperactivity disorder (ADHD). Consider Olympic star Michael Phelps, who is reported to have ADHD, which has gone untreated for years. This leaves clinicians with the ethical necessity to always balance and discuss potential benefits with potential losses, risks, and side effects. "Do no harm" whatsoever is generally and practically impossible.
The reviewer reports no competing interests.
