Should Autism Be a Death Sentence?

Paul Corby is 23, autistic, and suffers from a potentially fatal heart condition called left ventricular noncompaction. He’s high-functioning enough to have written and self-published a novel for pre-teens, but he also has severe social problems, is prone to emotional outbursts, and suffers from various psychological and developmental issues. He spends much of his day playing video games and never goes anywhere without a stuffed Princess Peach doll. Although he needs 19 different medications (many of them for his heart condition), according to his mother he handles his own med management. His heart problems are serious enough to warrant a transplant. 

And the doctors at the Hospital of University of Pennsylvania think he should die. Welcome to the wonderful world of 21st century medicine!

No one denies that there is a shortage of organs for transplant. Rationing is a sad reality, and each year several hundred people die while waiting for organs. Please note, however, that those people died while waiting for a viable organ. Paul Corby has been told he’s not even fit to be on the waiting list. Because he’s autistic.

The hospital is making the case that the medications and recovery process could exacerbate his emotional and social problems. They consider his social disability significant enough to impact his potential for recovery. The steroids he would need to take after surgery could radically magnify his outbursts and negatively affect his ability cooperate in his own post-op rehabilitation. All of these are certainly factors worth considering, but are they enough to write off an entire human life? Or are we looking at another group of doctors weighing the “quality of life” and finding it lacking in Paul because of his developmental disabilities?

Even after Paul’s mother Karen gave permission for the hospital to discuss her son’s case, they declined. Spokesman Susan Phillips told the Philadelphia Inquirer that “the physicians involved believe that any discussion of the specifics of his case would be most unkind to him and therefore will not comment.”

Don’t you just love that? She considers discussing the case “most unkind,” but telling someone he should go die is just okey-dokey.

Karen is trying to draw attention to his case and looking for another hospital who will add him to the transplant list. When the media and social media turn their gaze on a story like this, hospitals usually blink, so Paul’s chances for a transplant are probably improving.

That doesn’t change the underlying fact that the doctors at UPenn denied Paul a place on the transplant list because of his autism. You’d think Phillie-area hospitals would have learned by now that you can’t designate a portion of the population as lebensunwertes leben and expect people to just roll over and take it. We’re done with that. We have voices, and now we have the technology to make those voices heard.

Go, sign Karen’s petition. Share the link. Spread the word. Let’s get some sunlight on these dark corners, and let the medical world know that you can’t write people off because they don’t conform to an ideal. The world is turning, ever-so-gradually, against the disabled and “unfit.” Our cultural and political elites are dragging us into a new age of utilitarianism that demeans and degrades and devalues human life. Let them know you won’t stand for it. Where there is life, there is hope.

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About Thomas L. McDonald

Thomas L. McDonald writes about technology, theology, history, games, and shiny things. Details of his rather uneventful life as a professional writer and magazine editor can be found in the About tab.

  • Reluctant Liberal

    “They consider his social disability significant enough to impact his potential for recovery.”

    Should alcoholics or drug addicts be given a death sentence? It sounds to me like the doctors aren’t worried about his quality of life so much as likelihood of long term success. Someone who might not be able to participate in their own recovery might not be able to do what is necessary to make the transplant stick. And this stinks. It is a tragedy. It means that somebody who might live is going to die. But when there are only so many of these organs available, rationing based on probability of long term success is what we SHOULD be doing. This isn’t about autism, just like when addicts are denied transplants it isn’t because they’re addicts. It’s about using limited medical resources the best way we know how. And it is DISHONEST and UNCHARITABLE to the doctors involved to portray this as an issue about “quality of life” when it’s really about “potential for recovery.”

    I hope this doesn’t get me blocked from commenting, but the Pro-Life movement is strong enough to not need people to lie to serve its ends.

  • Thomas L. McDonald

    How is it either dishonest or uncharitable? I state their reasons quite clearly. What’s dishonest about that?

    And of course it’s about autism. He isn’t being denied a transplant because he’s overweight or nearsighted or a smoker. He’s being denied a transplant because of a set of conditions that are part of his developmental disability: conditions that are not at all certain to affect his recovery and over which he has no control. These conditions MAY make it more challenging, but being dead is pretty challenging too. If his health is otherwise stable and his behavior is not intentionally high-risk, denying him because recovery is potentially more challenging due to developmental disability is a non-starter.

    And I have no problem at all raising the question about these decisions being based in “quality of life” issues. All major surgery like this takes quality of life into consideration. Before my father had open heart surgery at age 87 his doctors considered his quality of life versus the risk involved. The question is this: is a value judgement being place on the quality of life of disabled people that treats their disability as a negative factor? There is no question that the answer is “yes” in many cases. Sometimes the doctors are blatant about it, but more often they try to finesse the issue as they are doing here. I’m assuming you don’t have a developmentally disabled child, but spend an hour on a message board and you’ll see stories like this repeated over and over again.

    You’re not banned yet, but you’re testing my patience by spamming the site and calling me a liar. I’m not going to play whack-a-mole with you forever as you get smacked down in one post only to drift over to another.

  • Reluctant Liberal

    I think you’re muddying the waters over the doctor’s reasoning for their decision. I think you are making unfounded assumptions about the doctors motives that reflect very poorly on the doctors, and my language in my previous post reflects the seriousness I felt like that deserved. You can be an honest person and go overboard every once in a while (I do), but I didn’t want to pull my punches on something as serious as what I think you did.

    I’ll back off posting if you like (just saw this response, my responses on other posts were made before I saw this). I enjoy a good adversarial conversation, but I also respect your right as a blogger to not want your combox cluttered with a bunch of issues you don’t want to deal with. This’ll be my last post for a while unless you say otherwise.

  • Autistic

    What the hell is this argument even about? I am autistic and there is no way that being autistic (except it’s like some extreme single-gene disorder) shouldn’t affect his long-term recovery. This is just another cover for eugenics.

  • Autistic

    You think, you think. But you never prove. This is about the most sycophantic bunch of defensiveness I have heard in a while. Gosh damn!

  • FWalsh

    Alcoholics and drug addicts aren’t allowed to receive organs unless they’ve proven drug free with testing the entire time they’re on a waiting list. Without knowing the specific person none of us could make an intelligent judgement. Steroids could make mood-swings, irritability and aggression worse. I would much rather hear of this young man dying surrounded by his family than being shot by the police because he attacked someone in public. Maybe he is already prone to aggressive behavior and THAT is why they are doing this. Or maybe he is high functioning,behaves basically normally for his age and the doctors are just being pricks, this story is pointless.

  • Thomas L. McDonald

    Thanks for contributing absolutely nothing to the conversation. Please feel free not to come back again.

  • Eric D Red

    “Welcome to the wonderful world of 21st century medicine!” Well, without it nobody would have a chance for a transplant and the extended life. Would you rather we didn’t have the medical knowledge? The problem isn’t with modern medicine, except that newer medicine may do away with the need for donors altogether. Until then, the problem isn’t that we can do transplants, but the limited number of donors.

    And that is the heart of the matter, if you’ll pardon the expression. You’ve raised the point yourself, but don’t see that it has to drive their decision. It isn’t a matter of whether he deserves a heart, but how to make the best use of those that are available. Many of those awaiting organs will die while waiting. It’s therefore a matter of where the available organs are most likely to succeed. His condition, both the intellectual issue (honest apology if this isn’t an appropriate phrase) and his other condition (19 medicines, after all), mean that a transplant is less likely to succeed in the long run. And the process will make his condition worse. These are valid reasons to give limited resources to those who are more likely to succeed. It isn’t right that it has to happen that way, but it is the right decision with limited options.

    The reasons the doctors give are a valid medical prioritization. Their stated explanation, most likely survivial, is a valid one. There is no reason to think that this is a valuation of the person, or some form of eugenics.

  • Sal

    Am reminded of this story:
    At first glance, this seemed like pure discrimination. But reading the mother’s blog posts about her daughter’s life, it becomes evident that even if little Amelia had normal intelligence, she would be a very poor risk for a transplant. Even with family organ donation, which may not have been feasible.
    The two cases are not identical, but I think the point is this: putting aside any developmental/ intelligence issues, would this person be a good risk for a transplant? Some would be, and sadly, some wouldn’t.

  • Just Saying

    My aunt was denied a transplant at Penn because she was a diabetic. She went to Temple and they put her on the list… There are many great transplant centers in the Philadelphia area, why the need to travel to Pitt or the Mayo clinic?

  • Kristen inDallas

    “Rationing is a sad reality, and each year several hundred people die while waiting for organs. Please note, however, that those people died while waiting for a viable organ. Paul Corby has been told he’s not even fit to be on the waiting list. ”

    He made this point above, but it’s a good point so I’ll make it again. We have the organ waiting list policies to address the need to ration. It’s not a first come-first served affair by any means. People are ranked by their likelihood of success, the immediacy of the need, and several other factors. People get bumped to the top of organ lists all the time and the queue gets rearanged frequently depending on who else is on the list. So even on the list, it’s not as if this young man would be given an organ that would be better used for someone else. The problem here is that they won’t even put him on the list, not even at the bottom of it.
    It’s the equivalent of saying that even if there were a rush of organ donations, and everyone on the list got their needs met, he would still not be deemed worthy of a heart. Because of who he is, because of how he was born, they will not even put him on the list. So yeah, I find your objection pretty irrelevant. I can’t say this guys necesarily deserves a new heart. But he at least deserves the dignity and the hope that come from waiting for one.

  • Ted Seeber

    When I first saw this case, I wrote the following poem. My autism is the reason I’m pro-life.

  • Terry InDfw

    I agree with Kristen inDallas. Call Dr. Phil. Seriously, the man has connections! Didn’t they just come out with an artificial heart for those waiting on a transplant?

  • Sagrav

    FWalsh didn’t contribute “nothing” to the conversation, what he/she was trying to point out is that this article only presents the facts of the case from the standpoint of Paul Corby’s mother. I clicked on the link that you provided, and it didn’t give any real information concerning the reasoning behind the doctors’ choice in this matter. She may be 100% truthful when she states that the doctors aren’t trying their hardest because they have something against autistic people. Or she may be panicking in a situation that is totally out of her control.

    Paul is already on 19 medications, and the doctors stated that they are afraid of the possible negative side effects that any new medication might have with the giant cocktail of medication that he is already taking. Doctors know more than you or I know about medicine and its effect on the human body and mind. If they are worried wild mood swings or misery within the patient as a result of a toxic mix of medication, then why should we be so quick to discount their assessment? Even if the new medication does work, will Paul be in pain the entire time? Will be a danger to others? These are the ethical questions that doctors have to grapple with in situations like this.

    Maybe these doctors are just scum. However, that makes me wonder why Paul’s mother doesn’t take him to another doctor for a second (or third, or fourth) opinion. Maybe everyone she’s spoken to has explained to her that prolonging her son’s life through even more medication would make his life so wretched as to make such treatment unethical. Maybe this is a loving parent who has fought so long and so hard for her child that she can’t even see when the battle is already lost. That’s why we need more information, not an article that basically just says, “Oh my goodness, don’t these doctors that we don’t know sound so evil when we take a random person’s story at face value? Sign this petition to tell doctors how to do their job!”

  • Joanne

    No doubt if autism could be diagnosed in utero, many of the individuals with autism would unfortunately be “terminated,” as happens so often with Trisomy 21 aka Downs Syndrome. (I’m not sure how valid the “over 90%” statistic is vis-a-vis children with DS being aborted, but the number is high, no doubt.)

    That said, I had a friend with some pretty serious mental health problems, paranoid schizophrenia among other things, and although his mh problems were fairly well controlled, he was not a candidate for interferon, which would have treated his hepatitis. Interferon treatments make people feel terrible, there are lots of potential complications, and they can exacerbate mental health problems. My friend’s hepatitis eventually caused liver cancer, from which he died. I don’t agree, however, that the doctors’ refusal to do interferon amounted to them telling him to “go die.”

    I’m a nurse at a large, urban teaching hospital and in my experience, people with even very profound degrees of disability, from medical problems like MS, anoxic brain injuries, morbid obesity, etc, are treated as aggressively as those without such issues. We can never let our guard down about this, however, and we should always scrutinize the work of the medical profession very closely.

    It will be very interesting to see if Paul’s mother gets a different answer from a different institution.

  • julian

    you forgot “I felt”

  • Clare

    Should anyone be having heart transplants?
    Some articles from LifeSiteNews about brain death:

  • Shannon

    This is disgusting! This autistic man deserves dignity, respect and compassionate care!