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Thursday, October 3, 2013
Autism as Spectacle: Art Caplan Misses the Point
In the Journal of Voice physicians wrote about cutting the vocal cords of a 14 year boy with autism spectrum disorders and Tourettes Syndrome. See: http://www.ncbi.nlm.nih.gov/pubmed/?term=vocal%20surgery%20autism The boy apparently had nearly 200 vocalizations per day at approximately 90 dB. The physicians noted behavioral and antipsychotic medical interventions had all failed. The authors concluded: “this case demonstrates that laryngeal framework surgery may improve the quality of life in patients with severe and intractable phonic tics, with or without morbidity of autistic self-stimulatory behaviors... Long-term follow-up of this patient’s voice and behavioral development as well as his laryngeal growth is warranted”.
As one would expect, people with Autism were not pleased. Indeed, most people with Autism were appalled by this surgical intervention. A quick google search of Autistic related blogs and comments on news articles clearly demonstrate outrage. I get this anger. When I read about what was done to the boy with autism I was instantly reminded of my visceral reaction to the Ashley Treatment in 2007. I was not alone as Ari Ne’eman, founder of ASAN was quoted in Salon that the: “The Autistic Self Advocacy Network views this surgery as profoundly unethical and bluntly are concerned that the UW Hospital approved it. Autistic people and others with communication related disabilities often use what’s termed as ‘problem behavior” as a way of communicating distress, anger, fear, anxiety or other important emotions that may not be easily communicated for someone without standard speech. There is a long history of family members and providers viewing these behaviors as strictly a medical phenomenon and not recognizing they’re important for communication. To violate a person’s bodily autonomy and damage their ability to communicate to serve the convenience of caregivers is nothing short of horrific. We view this as similar to the Ashley X Case or the long history of involuntary sterilization, teeth removal, and other inappropriate and unethical medical procedures conducted against people with developmental disabilities”.
The mainstream press has speculated about the ethics involved in this surgical intervention. In Salon, Mary E. Williams wondered whether this surgery was cruel or kind? (http://www.salon.com/2013/09/27/is_surgically_altering_an_autistic_boys_voice_cruel_or_kind/) Art Caplan, the go to bioethicist for every news outlet in the country supported the surgery in a recent op-ed. See: . http://www.nbcnews.com/health/opinion-surgery-stop-autistic-boys-screams-was-right-decision-8C11296293
Caplan believed the analogy to the Ashley Treatment and growth attenuation was misleading. Caplan stated that growth attenuation could not be reversed and was permanent. For this reason, among others, he weighed in against growth attenuation. In contrast, he supported cutting the vocal cords of the boy in question because it was reversible. Predictably, the mainstream press took Caplan’s words to be the gospel truth. This is a real problem. Caplan is a distinguished scholar. I have seen the man in action and there is no question he has charisma. When Caplan enters a room everyone knows it. Stephen Kuusisto recently remarked that Caplan’s “never seen a spectacle he can’t reflect”. See: http://www.planet-of-the-blind.com/2013/10/art-caplan-and-nbc-news-fail-at-understanding-autism.html
Kuusisto points out Caplan works within the medical model of disability and uses utilitarian logic. The “easy” solution, the convenient solution for care givers, is a surgical fix. Excluded from the discussion are people with autism in particular and more generally a disability studies or disability rights perspective. Caplan is the authority or seer the media seeks. He has mastered the sound bite and will comment on virtually any spectacle. The down side to this, and it is significant, is that virtually every news story I read referenced Caplan. It was widely reported the boy screamed non stop and was as loud as a lawn mower or motorcycle. Also reported was the fact that six months post surgery there is a 90% reduction in tic frequency and 50% reduction in intensity. The physician that performed the surgery is quoted as stating “the story is extremely easy to misunderstand”. The press clearly awards the physician great authority and points out that his own son was recently diagnosed with autism. Heavily implied, assumed really, is that Caplan and the physician that performed the surgery, are unbiased experts that know best. I think not.
Of central importance is what is not known and the cultural penchant to avoid suffering at any cost--especially when disability enters the equation. Do I want people to suffer? Of course not. But exactly what is suffering? Was this boy and his family suffering? Pulling a page from the Ashley X handbook the physician states: “this is about a very particular problem with a particular solution. It has to do with human suffering and being creative about it. What would have been barbaric would have been to ignore it and say Sorry, see you later... It would have been unethical to let him suffer”. The boys perceived suffering was not ignored. All options had supposedly been tried. Behavioral strategies did not work. Medications did not work. Botox on the larynx did not work. It appears there were no options--or that is what we are led to believe. There is a real effort to soft pedal the extreme surgical intervention. The physician noted: “What we wanted to do was preserve as much native function as possible, maintain the natural progression of his voice box, and achieve the goal of reducing the frequency and loudness. This is a reversible operation. It’s something you can do and undo. You’re making someone a little more breathy and less powerful”.
I am skeptical. It is ethically acceptable to perform surgery on a child with autism to eliminate his ability to scream loudly. This surgical intervention is ethical because we are told all other avenues were explored and failed. Better yet, the surgery is reversible. We are assured this is a unique case with a unique solution. For those pesky critics, especially people with Autism that are outraged, the surgery did not silence the child but rather merely made him more “breathy”. A “best effort” was made to preserve “native function”. Given these parameters Art Caplan speculates that “for this particular teenager, and this particular family it was the right choice to make”. Caplan notes the case has generated a lot of controversy within the Autistic community though he fails to mention any individual or organization. Caplan also notes the publicity about the case in question has created “a lot of grief from some other families who have autistic children”. In stating this Caplan has made a boogey man of any person that dares to question the surgical intervention. This is the exact same tactic Ashley X’s parents used to justify the bundle of procedures they dubbed the Ashley Treatment. Breast buds were removed instead of characterizing the surgery as a double mastectomy. Ashley X parents decried the “violent” response of the disability community. Many other parallels exist but this should suffice. Caplan concludes his article:
It is tempting, especially given the abuse of people with cognitive disabilities and mental illnesses by some in medicine over the much of the 20th century, to feel outrage at the idea of forcing surgery on an otherwise healthy young boy. But 21st century medicine gave Kade and his family a solution that has already allowed the boy to live a richer life -- and the solution can be reversed at any time. That seems to me to be cause for celebration, not condemnation.
Unlike Caplan, I am not in a mood to celebrate. This surgical solution did not take place in a social vacuum. An article was published in a peer reviewed journal. It garnered a significant amount of press. The surgery was performed at the University of Wisconsin, a widely respected institution. The physician and parents have been quoted in various mainstream news outlets. I assume they have done interviews in person or on the phone. In my estimation there is an effort to mislead people. Again this harkens back to Ashley X’s parents. Six years after the court declared they illegally sterilized their daughter the parents remain anonymous and continue to give interviews in the press. So please spare me the rhetoric that this case is about one teenage boy with autism. This is a case of parental child conflict of interest. Like Ashley X, the parents sought a surgical solution to make the care for their child easier, less problematic. This line of reasoning is framed in a way to highlight the child’s difference and focus on his or her perceived suffering. Rather than assume competence the parents and physicians assumed incompetence. They did not think about what was possible. Instead they saw pathology. At no point does Caplan or a news story ask what did this teenager in think? Did he have any say? Was he, to the best of his ability, a part of the decision making process? Was a hospital ethics committee meeting convened to discuss the case? If so, what were the findings? Did the parents seek out suggestions from the autism community or other parents who had children with similar issues? Perhaps Caplan will address these issues. Better yet, perhaps he could refer the press to experts in the field of autism so a serious and sober discussion can take place.
At a fundamental level the teenager in question is perceived to be different. He was deemed so different that he did not have the same civil rights as other typical teenagers. Some may perceive this as an extreme view. I think not. Would a parent of a typical child ever consider cutting the vocal cords of their child? Not a chance. This is not a question of what was or was not medically appropriate. This is a question of civil rights--more specifically a class of people being denied their civil rights. Typical people rule and those with different bodies must conform to societal standards. This is a classic case of individualizing disability. The refrain is old, worn and sadly familiar. We are talking about one teenager with Autism. This is identical to we are talking about one girl named Ashley X in Washington. Sorry but no. We are talking about all people with autism, all people with a disability, all people who have an atypical body. We are talking about people who are a class apart and subject to medical treatments that would not be considered if they were “normal”. In my book that makes the atypical less--that is denied their personhood. This is wrong. Caplan should know better.