17 Comments to 'To Cure or Not to Cure'
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To Cure or Not to Cure
Posted By avi
Following a lengthy and interesting exchange on my previous post (Brownian Emotion » But What About the Jews? see comments), I think it’s worthwhile revisiting the issue.
Background: The question came up after I’d rather callously used the word "autistic" in a semi-humorous post–of all the things that could be offensive about that post, this one took me by surprise. Things got interesting, but were derailed when Alexander’s Daddy kept lumping people who want to cure Autism in with the Nazis. It’s not that I’m overly sensitive about it, but I think we need to keep things in perspective and avoid that kind of hyperbole (which I think in his case, was a literal belief) unless it’s a demonstrable fact.
Caveats: So with the following simple ground rules, I’d like to re-open the discussion in an open thread. First, unless an organization is actually committing genocide–systematic involuntary destruction of a group of people (excluding the unborn, for our purposes) by a more powerful group of people–we won’t label the scientists and doctors who are trying to cure Autism as Nazis. You may think they’re wrong, but if their intentions are to help people who they feel are suffering (namely parents and children), then we should not equate them to extinctionists (thanks, James). Second, I want to keep the discussion to the socially relevant issues–our individual rights, social pressures, and what we, as a society should do about this and related issues (Lauren brought up people bleaching their skin to be less "black" to fit in). Third, please try to keep your responses short (under 500 words is a good guideline, not including links out) so we get more of an exchange.
From what I understand, there are a handful of related questions to answer:
1. Should we accept people with Autism as they are (whatever that may be) and not discriminate?2. Should we provide resources for parents of autistic children to help them cope and thrive?
3. Should we provide therapy for children and adults with Autism to help them cope and thrive?
4. Should we research the causes of Autism, neurological and otherwise?
5. Should we research a cure for Autism, even over personal objections by people with Autism?
6. Should we allow parents of autistic children or pre-autistic embryos to cure them, if a cure exists?
7. Should we allow parents of pre-autistic embryos to selectively terminate them?
8. Should we encourage autistic adults to be cured, if such a cure exists?
9. Is killing an autistic child justified if the parents can’t cope?
10. Is killing all people with Autism justified or reasonable under any circumstances?
Before you answer, you can read some background material that Alexander’s Daddy posted (see page 2) as a response to my comments, and also check out the other side at CureAutismNow and others.
To be frank, I’ve ordered the questions in terms of my own answers, from a solid "yes" for 1-6 and a solid "no" for 9 and 10. I think 7 is morally questionable, but falls under "Pro Choice" doctrine for now. I think #8 depends on what we mean by "encourage," though I’d oppose forcing anyone or misleading anyone to think a cure is best if it isn’t.
I’d be interested to hear if other people have a different dividing line, or if they’d answer yes and no for different blocks of questions out of my arbitrary selected order. I’d imagine that #7 would jump to the "no" category for anyone who is Pro-Life.
[Note: I'm using "Autism" with a capital A but "autistic" with lower-case to denote that someone may have Autism, but that doesn't define the person as a whole. I hope that's clear. It's hard to stay consistent.]
[Note on comments: using more than one link will cause the message to get automatically moderated due to spam filtering. Being disruptive or rude will get you moderated or banned.]
Jun 28th, 2006
[condensed by Avi -- you don't need to quote the questions again or separate repeated answers.]
1. Certainly they should be accepted as what they are: human beings with equal rights and responsibilities who happen to have a medical condition that sets them apart from what the majority consider "normal". As far as use of the word "discriminate", depending upon the level of Autism, we may have to. My only experience with this was in the late 1960’s when a friend brought his ten year old son who he told us was autistic to our "gentleman’s farm" to see the sheep and lambs we were raising. The boy repeatedly ran at the frightened sheep despite his dad’s request that he not do so. We had ask his dad to take him out of the barn because he was endangering the animals. I cannot imagine how such a child (or adult if this lack of control persisted into adulthood) could be accommodated in a school or work setting without very expensive and disruptive special provisions. Is that discrimination? I guess it is.
2, 3, 4, 5, 6 Yes.
7. As with all pre-born children, I think abortion should be allowed during the first trimester for any reason or no reason. During the second trimester it should be allowed for serious health conditions of the baby or mother if the mother voluntarily decides to have an abortion. During the third trimester it should be allowed only to save the mother’s life.
8. Yes, but limited to encouragement.
9., 10 No. However, if there was a very serious and exceptional countrywide famine or other national emergency, or a shipwreck on a desert island, etc., those in charge may have to let some non-productive people die, and that could include some autistic people if they happened to be non-productive.
Yes on 1 through 7. No on 8-10. I know it’s popular to try to force some kind of “middle ground” on the abortion debate by coughing up restrictions based on trimesters but I find them untenable. If you think abortion is suddenly tantamount to murder in the second trimester, why make exceptions for anything but the mother’s life.
I think expecting parents should be free to terminate a pregnancy for any reason they choose. I may not approve of their reasons, but I don’t approve of a lot of things people do. The law is too blunt an instrument to finesse people around complex ethical issues.
What I was trying to get at in my earlier comment was this: the law must protect our freedom of choice (in abortion as in many things). But we humans are more than legal entities. We are cultural entities as well. And while the law keeps us free as individual, we must always be aware of the ways in which we effect each other’s lives through the softer, messier, unlegislatable soup of culture.
[Edited by Avi for being off topic -- I don't want to debate abortion and "when" is the appropriate cuttoff (or not). You each stated your opinions. Unless you want to talk about aborting 2nd and 3rd trimester fetuses for "undesirable" conditions, let's keep the discussion to IVF and issues related to selecting out pre-autistic embryos.]
Lauren, having an accidental pregnancy is a naturally occurring event. Technology and doctors almost certainly didn’t promote the event (at least not intentionally) and abortion, IMO, is a reasonable response.
IVF is a bit different in my mind. If you create an embryo intentionally but haven’t yet implanted it, should you be free to discard it for any reason, even if it has nothing to do with protecting the rights of the mother? I mean, we might have a problem if parents or doctors were intentionally creating microcephalic babies (to the extreme of having no higher brain function when born) to harvest their organs. So why is it okay for them to in a sense create only male babies or only "genius" babies by discarding the "lesser" embryos?
The reason abortion is so thorny is because of two competing sets of rights, the mother and the potential child, and we side with the mother for the most part (she still can’t choose to harm her fetus with drugs, for example). But if the unimplanted embryo can be adopted by another couple, then both sets of rights can be protected. And if the mother has chosen to go to term, then we’re not forcing her to do anything, except to accept a natural result of her egg and the father’s sperm.
I’m not nuts about creating multiple embryos in IVF just for economic reasons (so we don’t have to repeat the harvesting if the first few implantations don’t take). But creating multiple embryos just so we can pick and choose doesn’t protect anyone’s rights. And it pushes it towards devaluing human life with no real social gain (unless you think eliminating female babies in China, or children with Autism in the US is a benefit, though don’t forget the long-term impact of in-vitro eugenics, both culturally and genetically for the species).
I will way into this over the weekend as I’m too busy at the moment to comment. As a primer to my future comments I ask that those interested look at two links. These links will serve as a background
http://en.wikipedia.org/wiki/Autism_rights_movement
http://web.syr.edu/%7Ejisincla/dontmourn.htm
By the way, I’m not “Pro-Life”.
Autism cannot be cured anymore than someone who is homosexual can be “cured” from homosexuality.
The argument is whether society can accept autism in the context of neurodiversity.
Autism is defined today by the DSM-IV. But, should it be?
Homosexuality was defined as a pyschiatric disorder up and until 1972 by the DSM II, but was dropped from the DSM in 1973 as a result of their rights movement.
I think comparing Autism to Homosexuality is a much more apt analogy than your earlier ones
And certainly Homosexuality carries with it a lot of issues (most of them from discrimination and homophobia of others). I can see strong parallels with Autism there.
But being gay doesn’t carry too many negative symptoms in my mind. I mean, there are forms of sexuality that we do discriminate against — pedophilia, bestiality, necrophilia — which I won’t equate to homosexuality or autism in any way except to point out that there are both good and bad, social and anti-social, helpful and harmful, differences in our brains. Right now, I’m operating under the assumption that Autism is on par with something like Schizophrenia as a mental condition, not that the symptoms are at all the same. But we do try to treat Schizophrenia as best we can and I don’t know of anyone arguing to let people walk around in public in a delusional state. That said, if the drugs to treat Schizophrenia are worse than the symptoms, I would never want to force them on anyone.
Negative symptoms are in the “eye of the beholder”. Pedophilia, beastiality, necrophilia are questions of the power difference between the person doing and the person or animal it is being done to, which is much of the argument of autistics. We, as a group are on the negative end of the power equation. Such as, “I would encourage autistic” adults to take a cure because I think there is something wrong with you, I don’t accept that you are just “wired” differently than me and therefore I don’t know how to adapt to you, “you” must adapt to me.
For me, I’m heterosexual, but I would never try to make a homosexual heterosexual so I could feel “comfortable”. Part of the resistance of accepting neurodiversity comes from “preconceived ignorance” of autism. Autism is everywhere. It’s in your universities, in your science labs, in Hollywood (Dan Akroyd is Asperger’s), in industry (Bill Gates?), we are Noble Prize winners (http://www.msnbc.msn.com/id/7030731/), we are mail room clerks, we are librarians (I’d post a link but I’m trying to keep it down per instructions), we are possibly Presidents of the US (again, no link per instructions), we are poets, we are people in institutions, we are below average intelligence, we are above average intelligence, we are religious, we are athesists, we are gay, we are straight, we are unproductive, we are very productive, etc. etc. etc.
I guess one problem is that with homosexuality, you can be anywhere between straight and gay, but you can’t be "so gay" (1000 times gayer!) that you lose the ability to function. With neurological conditions, one can range from full functioning and indistinguishable from everyone else to severely disabled (and realizing some of those disabilities may be due to people not addressing the issues properly in childhood). I don’t know where the hard line is, but clearly, when I and others talk about cures or treatments, we’re talking about it for those who need it and also want it, not the high-functioning segments of the population. And if there is discrimination against a high-functioning adult or child due to stereotypes and misunderstandings, then I and probably most others would agree that’s intolerable.
[btw, multiple links are okay, it just means the comment won't get posted right away.]
Avi, let’s talk about this functioning thing for a moment. I will assume you know who Stephen Hawking is. Would you consider Dr. Hawking a high functioning individual as you would define the term? If Mr. Hawking didn’t have access to a Facilitated Communication machine, he wouldn’t be able to communicate. No one would know what was going on in his mind. No one would know that trapped behind his “broken” body is a genius. Do you think he has added to the human experience.
Autistics can be helped in childhood and others take longer. Amanda Baggs didn’t know how to blow her nose until she was in her twenties, yet her writing is brilliant and she is contributing to the understanding of autism in the world. She is changing hearts and minds. However, most would consider her very low functioning.
Temple Grandin was diagnosed as severely autistic when she was a child and her parents were told to institutionalize her. Today, she is a professor at Colorado State and a prolific author. However, she didn’t become what some consider high functioning until she was started taking medication. We’re not against taking medication to help with certain symptoms, as long as the medication is taken by our own free will. I know you don’t mean to suggest that “lack of addressing the issues properly in childhood” means that the parents are at fault, that goes back to the dark days of Bruno Bettleheim. This, like you correctly stated is a spectrum disorder.
I don’t know any autistic, based on functioning level, that wants to be cured. Many of those who have been labeled “low functioning” are very successful writers, and the internet has really helped them to reach out and communicate. While their body language may be misinterpreted by neurotypical’s, their writing and typing is clearly understood by all and they answer in the affirmative that they do not seek cures either. What they do seek is accomodation. Cure implies that they are not accepted for who they are. Autism is not cancer. Autism is not painful.
Is it only correct to discriminate against someone’s interpretation of an individual’s functioning? I don’t think that is what you meant. Autistics as children and not the same as adult autistics. Everyone develops along their own timeline.
Everyone in the entire world will be disabled at some point in their life. How we treat those who are disabled is a reflection of our souls.
Eugenics is a very dangerous path to take. One of my favorite SF is Gore Vidal’s Gattica (is that SF?). Neurotypical people can learn alot about themselves in how they react and support disabled people.
Yes, Gattica is SF. I guess it would be good to ask Dr. Hawking if he would want his old body back, before the degeneration, I mean. For children, I imagine most parents would want their child to have the best of life. So whether it’s because autism is frowned upon by others, or because it can cause individuals to suffer, even a little, I imagine, if given the choice, most parents would want their children to not go through it.
A cure is for those kids (or embryos) as much as anyone. I’m glad you’re not against therapies to improve the lives of people with Autism. I see a cure as a therapy you don’t have to continually reapply. And we agree it should be voluntary for adults.
I can even understand why someone wouldn’t want to change. One of the main reasons adults don’t want to take antidepressants is that it changes their personality. But yet they do some good. A lot of people with bi-polar disorder would probably say it’s great when they’re in the manic phase. Schizophrenics might cling to their delusions as real. And as I mentioned, there are pro-anorexia and bulimia groups out there who say we should just accept people starving themselves or vomiting as normal. Addicts cling to the idea that it’s their choice and their life, though how many of them wreck both their lives and others in the process of killing themselves? And then there are the sociopaths, who, lacking a moral compass, wouldn’t see a problem with killing someone, though the rest of us might.
I guess the point is that sometimes the effects of a neurological condition are self-reinforcing, such that the individual doesn’t want to change, or can’t even conceive of things being any different. Yes, the rest of us should be understanding and respectful. We can’t change anyone except ourselves.
But if I saw a man who lived in a swimming pool, who learned to swim and never walk, I might suggest he try to learn, just to get a new perspective. Sure, he might like swimming his way through life. He might even be a better swimmer than me, capable and strong. But since he’s never actually gone anywhere thus far, he might not realize: there’s a whole ocean to swim out there.
Perhaps that man who lived in the swimming pool could bring you into his world, his perspective. Perhaps you might be convinced that living in a swimming pool is better than walking around your whole life. What’s more interesting, living a life of normality, or living a life as someone different from everyone else?
Here’s a comment from Dr. Hawking about disability:
When asked recently about his disability and other questions surrounding it he replied: “People are fascinated by the contrast between my very limited physical powers, and the vast nature of the universe I deal with. I’m the archetype of a disabled genius, or should I say a physically challenged genius, to be politically correct. At least I’m obviously physically challenged. Whether I’m a genius is more open to doubt. I don’t pay much attention to how journalists describe me. I know it is media hype. They need an Einstein like figure to appeal to. But for them to compare me to Einstein is ridiculous. They don’t understand either Einstein’s work, or mine. Have never heard anyone say isn’t it a shame that such a brilliant mind is trapped inside a useless body. If I did, I would treat it with the contempt it deserved. I generally find that even people that haven’t heard of me treat me well and are helpful. I’m not sensitive, if occasionally they patronize me, I just feel it’s their mistake. Being disabled, or physically challenged, makes no difference !
The difference is I can choose to live in the swimming pool or not.
From Dr. Hawking’s site:
I don’t read that as him not wanting to be free of the disease or liking it very much. He’s accepting the reality of it and making the best of it, which is healthy. But he knows this disease will soon kill him. Do you think he wants to die?
Moreover, if we accept that there’s some benefit to overcoming one’s disability (and I think there is, in making a better person overall), then why don’t we argue to actually make people disabled from birth so they have something to overcome?
There’s a great Kurt Vonnegut story that shows a world with compulsory disabilities (in this case to make everyone equal). The more they keep heaping on the main character, the stronger he gets. Sounds like a plan!
I believe Alexander’s Daddy is not that anti-cure, mind you, but he’s doing a good job of presenting the anti-cure perpective.
I think no one would be really against finding appropriate, safe ways to improve the outcome of autistics. That’s a separate debate.
Now, the extermination of autism genotypes is a different matter, and is a moral/ethical question primarily. But even for the morally challenged, what if by eliminating allele combinations that lead to “low functioning” autism, you were to inadvertently increase the frequency of each of said alleles? (Tampering with nature is what I’m talking about). Also, let’s grant that some autistics make valuable contributions. From genetics, I don’t believe you can predict if someone will be an Einstein or homeless. Genes are not deterministic like that. So there are some practical issues that are not resolvable through genetic testing alone. Let’s also assume that all low-functioning autistics are aborted. At that point, all the slightly higher functioning become “low functioning”, and they are aborted in turn, and so on. Where does the slippery slope stop? There’s no hard boundary.
Joseph, I believe in evolution of beliefs and convictions.
Joseph, I’ll point out that I’m personally not nuts about IVF and abortion beyond a fertility solution and a pro-choice legal stance. However, I still have yet to hear of any plan to force parents to abort pre-autistic embryos or wipe them off the map. I can imagine the "cure autism" side using rhetoric like "eliminate autism" but I don’t see evidence of them wanting government to force parents to "solve the problem" for them.
Lauren argued the opposite, actually, that since the state is so bad at these sorts of things, it should be left to parents. I think we may need some controls to limit frivilous destruction of embryos. But a cure, for me, is a medical treatment, not a culling of the genome.
As for the law of unintended consequences on the genetic front. It’s certainly possible. It’s also possible that two parents might abort the next Einstein whether it’s because of a genetic screening test or because he was an unplanned/unwanted event. We can never know. That’s more an argument against abortion in general (and for a better educational system to identify latent Einsteins). I don’t disagree with the sentiment, but it’s trumped by the rights of the mother.
The slippery slope argument is a slippery slope itself. I mean, once we start arguing that everything is a slippery slope, where do we stop?
Currently we screen for all sorts of genetic diseases, some of them quite devastating to the child. Should we stop all of those and leave everything to chance? That’s a bit too fundamentalist for me. On such ethical issues, we have to trust that in the continuing debate, we find the right balance. It’s more a tug of war than sledding down a hill. In other words, I don’t think we’d advocate killing "high functioning" embryos just because someone labeled them "low."
I think there are people who argue that treating (”curing”) depression or even schizophrenia will stunt the artistic impulse. Perhaps in autism the parallel would be the scientific impulse? I can see AD’s basic point - where do we draw the line between human variability and illness? People with ASD have contributed to many fields, but particularly in the STEM fields (science, technology, engineering, math). The extreme point, that finding a treatment (”cure”) will then inexorably lead to being forced to take the cure, is more tenuous.
At least depression and schizophrenia are largely treated in adults. There is a large body of literature on the benefit or harm of treating childhood depression, bipolar disorder, without consent of the child. Autism would seem to fall under this category - does the child want to be cured? can the child contribute to that decision? does the condition (to be neutral) prevent or interfere with an informed decision? Unfortunately the family situation may not allow an informed decision either (are the parents affected? are they treating or not treating the child, or themselves?).
I think that any condition that prevents an individual from caring for him or herself warrants a search for treatment that allows that independence. Severe autism certainly falls in that category (as does schizophrenia, severe depression, cancer, Alzheimer’s etc). That is not the same as saying that all people with ASD need or should be forced to be treated.
And searching for a cure isn’t the same as saying that their lives are worthless without treatment (as with anyone with a severe debilatating illness). A parent who kills their own child is a disordered parent (most children killed by their parents are not autistic - their parents have untreated depression).
In terms of the IVF/prenatal diagnosis question, in an age where kids with Down’s syndrome grow up to be actors and actresses, and kids with HFA make a fortune in high tech, kids with paraplegia grow up to be athletes, parents who would abort are cowards. And living among “normal” teenagers at a boarding school, many of them are a big disappointment to their parents anyway (again, I think generally b/c the parents are cowards). There is a difference btw being afraid and being a coward. It is an illusion that you can choose your kids to be forever perfect at birth (what about all of the mental illness you will later gift them with, their accidents of birth, illnesses, accidents on their bikes or cars?!).
We went through high tech fertility but not IVF. I have friends who had “leftover” embryos and had to decide what to do with them - keep indefinitely or destroy (in effect the same thing), donate to science (not a simple process, actually), let another couple adopt, have more kids. Most picked the first option. I can’t say what we’d have done, but wanted to put it out there.
Lisa, I don’t find much to disagree with in what you wrote.