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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. 

9 comments:

Dr. Dan's Daffy Deliberations said...

I agree wholeheartedly with your reasoning and clearly this type of surgical intervention on the vocal cords of an autistic teen typifies a disability-grounded parent-child conflict. Caplan's stance reminds me a bit of Peter Singer's orientation, which by focusing on the presenting disability, denies the autistic teen his very personhood, and all of us in the disabled community for that matter. The surgery was done to make the boy more tractable and thus "socially acceptable" rather than enabling him to express himself freely. Irrespective of whether the procedure is reversible or not, the psychological scars from the experience will be permanent.

Julie H. Rose said...

I know two people with Tourette's who learned to control their vocalizations. I know one person quite well, and I know she had a lot of behavioral therapy in which she was a willing participant. Both she and her parents worked hard (and together). . .so I know Tourette's is a spectrum, too.

Regardless, we do not know. We certainly do not know what the boy thought. A 14-year-old boy certainly has thoughts about this, and can articulate them in some manner. The fact that we do not know, and that there is so much misleading in this case is a big red flag to me that it is not ethical. Just that.

As I wrote on FB, I think this is disgusting. Period. I was victimized by parental decisions about health care where my needs were never asked or addressed, and when I did express my opinion, it was solidly ignored because I was told I did not understand what life as adult would be like the way I was. So, I was needlessly traumatized and shamed. And not as badly as this boy, I'm sure.

Sickening.

Rachel Cohen-Rottenberg said...

One of the things that I find so confusing about the reporting on this case -- and I think the confusion originated with the doctors -- is that it is unclear whether the young man's vocalizations were autism related or Tourette's related. He has both diagnoses. If they are autism related, they are clearly purposeful and communicative and should not be messed with. If they are Tourette's tics, they are involuntary and serve no communicative purpose. I think that much of the problem here is that the reports in the media foregrounded the young man's autism, because autism gets more page clicks as subject matter than Tourette's. But there is Tourette's going on here as well. So what is the surgery really addressing? Purposeful communication or involuntary screaming? Compounding the problem is that the doctors see little difference between an involuntary Tourette's tic and purposeful autistic communication. For doctors to fail to make this distinction is appalling and dangerous.

I would support this surgery if it were clear that it was to weaken the severity and frequency of Tourette's tics that were causing the young man suffering and were impeding his ability to function optimally, to communicate, and to be happy. If I were involuntarily screaming hundreds of times a day, I can imagine wanting someone to solve the problem. If I were screaming because that was my only form of communication, I'd want someone to figure out why I was screaming. If it's impossible to parse the difference between the two, I would suggest leaving the vocal cords alone, for all the reasons you've cited.

Rachel Cohen-Rottenberg said...

Julie, my main concern is to separate how this has been framed in the media and in the medical establishment from the motives and feelings of the parents involved. I fault the writers who made this an autism issue and did not separate Tourette's as a condition unto itself. They've muddied the waters very badly here. I fault Caplan for doing his usual utilitarian reasoning. I fault the doctors for their ignorance about autism. But I do not take these things as any kind of sure indication that the parents' motives were bad. Their motives might have been bad, but then again, it's impossible to say. Anyone who has ever been interviewed knows how badly words can get twisted, how incompletely the facts can get told, and how badly things can be spun. All we have is what is in the media; we know virtually nothing about these people outside of that framing. The parents have been quoted, but it's impossible to know the context of those quotes or the thinking behind them. So all the red flags are media and medical establishment creations. Where the parents actually stand on how they view their children's disabilities is anyone's guess.

It's possible that the parents consented to a treatment for an intractable Tourette's problem that could not have been solved any other way. It's also possible that they were completely self-absorbed and just wanted a more compliant child. Or it's possible that any number of other things were going on. I'm unhappy with the idea of commenting on the parents because of the way this has been spun by the media and the medical establishment.

This feels different to me from the Ashley X case because the surgery on Ashley X was done purely for the convenience of the parents and others who were in Ashley's life. The only thing they said about Ashley's comfort was that they'd be saving her the discomfort of menstruation. That's very different from saving someone from uncontrollable tics that cause him to yell at the decibel level of a jackhammer hundreds of times a day. Menstrual pain is not unmanageable pain; screaming uncontrollably seems to me to be in a whole other category. To me, it's the difference between preventing discomfort and preventing an involuntary response that interferes with functioning and happiness. Again, I say this only if the young man's screaming was completely involuntary, served no purpose, and could not be mitigated any other way. If the screaming was purposeful and communicative then, obviously, it's a whole other conversation.

Julie H. Rose said...

On a purely intellectual level, I understand the distinctions you're making, Rachel, and I agree with you, though I did make the point that Tourette's vocalizations can be controlled with behavioral therapy, though I'm no expert, of course.

I do know that there are few issues that are addressed properly by the media. Whenever any one with a special interest or expertise analyzes any news story, they see the flaws.

Where I see the flaws in is my own bias, and that bias is one where through experienceI know only too well the results of the confluence of parental fear, ignorance, and the folly and hubris of doctors.

Granted, these parents may be above reproach, but my gut tells me that this is unlikely with the information that we do have. And certainly, the ethics of this are condemnable, at least in my mind.

I am not arguing that there isn't a problem in the reporting and confusing the diagnoses, most likely originating in reporters' not knowing a damn thing about either, or at least, very little.

There's too much here for me to unpack. . .

william Peace said...

Dr. Dan, What gets me about the article by Caplan is that people with no experience with disability will wholeheartedly agree this was a good "fix" to the problem. As you noted utilitarian philosophers consider pathology to be key issue. When it comes to disability the medical condition, a non terminal condition, is secondary to the social problems it generates.

Julie and Rachel, Great exchange of comments. I am glad you have both commented as this is not my area of specialization. Hence I appreciate your insights. I was truck by linking Tourettes and Autism. Seems to me these terms are like a proverbial garbage can when doctors cannot come up with a diagnosis. Sort of like ADHD. Of critical importance here is communication. There is far more we do not know. In fact the most important issue, communication is not known.

Claire said...

I am in agreement with Rachel on every point. And to Julie, the issue of controlling vocal tics caused by Tourette's, and your remarks about how your parents ignored your personal wishes do not take into account the possibility that this autistic person may have had developmental issues that precluded the sort of ability to participate in decision making about himself. This is one of those awful cases where the devil is in the details that we will never be privy to. I also decry the publication of the very difficult personal choices that parents sometimes have to make in medical journals, thus turning unique and often lesser of evil solutions into "new treatment options" that becomes generalized and applied indiscriminately across the board.

Julie H. Rose said...

Claire, I am aware of my not knowing a thing about this particular case. However, you articulated perfectly the reason I add my particular story to this mix and why this story is upsetting: ". . ..thus turning unique and often lesser of evil solutions into "new treatment options" that becomes generalized and applied indiscriminately across the board."

I told my husband about this story and he pointed out adamantly that I could make a judgment because of how much we don't know. My point is (and was) exactly yours: the public message is that we need not know a child's wishes, they do not matter. In fact, we don't even need to know their diagnosis well. These particulars are minor or comparison to normalization at all costs. For the good of the child.

This is the message my parents received from "good doctors." That is the message that most people carry away from this story, and if one criticizes, the lack of particulars are brought up.

Julie H. Rose said...

Correction to above post: My husband pointed out that I could NOT make a judgment based on the facts we know.