Reader Su pointed me to a Wikipedia article on “neurodiversity” that begins as follows:
The article includes this under the “autism rights movement”:
The autism rights movement (ARM) is a social movement within the neurodiversity movement that encourages autistic people, their caregivers and society to adopt a position of neurodiversity, accepting autism as a variation in functioning rather than a mental disorder to be cured.
. . . Members of the various autism rights organizations view autism as a way of life rather than as a disease and thus advocate acceptance over a search for a cure.
I agree that there may be a spectrum for many mental conditions like depression, autism, and even bipolar disorder, and that the spectrum may even be continuous rather than a bimodal one having peaks at “normal” and “disordered”. After all, neurological conditions likely reflect a nexus of genetic causes—with cognitive and behavioral differences based on many genes—as well as environmental influences. Nevertheless, the important question is this: what do we do about those who suffer from things like bipolar disorder or autism? And I say “suffer from” deliberately, for doctors clearly see most such individuals as suffering because of their conditions. By accepting the condition as “normal”, or writing it off as simply one segment of a spectrum, neurodiversity advocates implicitly—and sometimes explicitly—deny that these conditions should be be cured.
I find that odd and even reprehensible. In the desire to see everyone as “normal”—as part of the rainbow of human diversity—this movement totally rejects the idea that some people are actually suffering and could benefit from treatment. Why else are there drugs for bipolar disorder, and why do parents desperately seek help—both medical and psychological—for children with autism?
The neurodiversity issue seems to me an extension of “identity politics”—which I’ll take here as the view that everyone is special and unique, and deserves to have their desires, abilities, and personality not only accepted, but celebrated. It’s the same mentality that has decided that, in school contests, everyone should get a prize so that nobody will be disappointed, or feel stigmatized or inferior. In the neurodiversity movement, not only should one not stigmatize “mental illnesses” (something I absolutely agree with, for these conditions are, like all disorders, determined by genes and environment), but we should accept them to the point that we shouldn’t even try to cure them.
But ask those who suffer, or who live with the sufferer, whether we should seek cures. Since conditions like autism, bipolar disorder, or schizophrenia must surely reflect neurological issues, they can in principle be cured or controlled. Bipolar disorder, for instance, can now be largely controlled with drugs, and believe me, those who have this issue want those drugs, despite their often unpleasant side effects. And which parent with an autistic child wouldn’t want that child to be helped or cured through some kind of intervention? The “facilitated communication” scam, in which people claimed to help autistic children “speak” by guiding their hands on a keyboard (the facilitators proved to be the ones doing the communicating), shows how desperate parents are to help such children.
In its desire to celebrate mental diversity, the neurodiversity movement in fact promotes suffering. Making sure that all children get prizes is one thing, and not terribly harmful, but denying children or adults cures for mental disorders is a different matter. That’s both thoughtless and horribly selfish, placing a misguided liberal ideology above the well being of the afflicted.
Just to get a medical opinion, I called my doctor, Alex Lickerman, author of The Undefeated Mind and the best doctor of any type I’ve ever known, to get his take on the “neurodiversity” issue. I was heartened to hear that he agreed with me. Alex noted that had seen many children and adults with conditions like bipolar disorder or schizophrenia, and asserted that he had no doubt that most of these people are truly suffering from their condition. And he gave me two quotes that, with permission, I reproduce here.
“The issue is not how far from normal you have to be to be considered as having a ‘disease’. The issue is how much of the way you are ‘built’ is causing you to suffer—and what do we do about it.”
“The neurodiversity movement is utter nonsense. Ask those who have these problems whether or not, if a cure was offered, they would accept it.”
There’s little doubt that the vast majority of people would. I’m aware that there’s a “deaf culture” movement, in which some people who can’t hear claim that they wouldn’t take a cure for hearing loss were it offered, and perhaps most of them are sincere. Deafness, after all, can be dealt with in a way that doesn’t always cause suffering in the person who has the condition, or in their relatives. But I’d guess that a goodly proportion of even those people would get rid of their deafness were it possible.
Well said, PCC.
An autistic commenter on Love Joy Feminism once stated that autistic people should not get any treatment, ever, because autism is “just another way of being”.
And I mentioned the doofus from NZ who argued that DS is just another trait, like eye color, and that it should be treated as such.
These folks are disconnected from reality.
Would they also argue that people with missing limbs should not use prostheses? Being armless is “just another way of being” … ?
http://33.media.tumblr.com/8a9c182ef9bd5a2a71bc32235bae85a4/tumblr_inline_nooi7kFm1U1r1znu5_500.gif
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Prosthesis is not a cure; it’s an accommodation.
I expect many neurodiversity advocates would be in favor of accommodating the special education needs of autistic children. But talk of “curing” autism seems misguided in the same sense as talk of “curing” amputees. There can be no post facto treatment to undo the idiosyncratic development of an autistic brain and rebuild it along neurotypical lines.
So in that sense, autism is a “way of being” that people must accept and learn to live with.
Well, i’m not sure any neurological condition that requires continuous treatment with medication is that different; the medication is also an accommodation, not a cure. If the condition has a biochemical origin, then the drugs are a kind of biochemical prosthesis; a chemical crutch, if you will. Just like my hypertension hasn’t been cured; I have to continue to take drugs daily to keep my BP at “typical” levels (actually, it’s now better than for a typical person of my age!).
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Good point.
I am guilty of using the term ‘cure’ before, but that’s simply because I could’nt think of another way to put it.
But yeah, we can, and should, be able to treat autism, aspergers etc as another kind of ‘normal’ but still help those with it to lead successful, happy lives.
I object to the people who argue that no ‘help’ should be given whatsoever, because ‘normal’ means that nothing is wrong, in any sense.
This was an awesome movie.
Well, if we ever develop a cure, that person is free not to take it. He is free to use his free speech to try and convince others not to take it.
He is not free to force/order them not to take it. Nor is he free to decide that government science funding ought not go to this issue. If he wants to be in that last position, he has to become either an elected representative or a senior official at one of the major grant-giving entities.
+1
What is DS and which doofus from NZ are you talking about? I agree strongly with PCC’s article, but you’ve lost me here.
I mentioned him in another article. He is a pro lifer from NZ, and he trolls the Patheos boards, arguing *incessantly* that DS is just another trait like eye or hair colour. That it is simply a wonderful genetic variation, with never any downsides.
I remember now – thanks Cindy. 🙂
DS = Downs Syndrome, I’m guessing.
Yes, I think so.
I have nothing against Downs Syndrome people (other than strongly supporting testing to diminish the number of sufferers – that’s right, I said sufferers – being born). Some of their ‘supporters’, on the other hand, merit all the contempt that can be heaped on them.
Ah – Deaf culture… I can assure you that there are plenty of d/Deaf (capital D broadly depends on whether you identify with the Deaf cultural community) people who want cochlear implants, but there are also those who do not, & are happy to consider themselves as ‘normal’.
I think there is overdiagnosis of mental illness if I can call it that. Some drug companies pushed the medicine cure from the 1980/90s, when it became popular & a convenient way for doctors to deal with certain behaviour etc,…
This is interesting – http://www.the-scientist.com/?articles.view/articleNo/43150/title/The-Roots-of-Schizophrenia/
I agree strongly with you. We seem to have gotten to a point where anything that can be described with the magic talisman ‘diversity’ must automatically be the correct choice. The current rage is that people just get to make up their own mental states, gender states, even racial makup, and this is all part of the wonderful touchy feely hyper non judgemental world that seems to be unfolding.
Actually for some years there has been a movement among some in the deaf community to redefine deafness as a desirable condition that should not be altered by ‘meddling’ doctors. People have a right to make that choice, and I have a right to consider it nutso.
There are also deaf people who specifically want to have deaf children
Wanting is fine. There are various ways to get a deaf child, most of which are ethically fine and not assault at all. My view would be that embryo selection for profound deafness is over the line into large civil damages territory, if not actual jail time for all the adults involved.
I think it’s worse than that. I have seen it suggested that (genetically) deaf IVF parents should be able to choose to have deaf children so that they share their culture. I’m all in favour of acceptance, but imposing something like that on someone else seems wrong. Sure, if you are happy being deaf, don’t get an implant – but don’t try and stop others from doing so!
This post implies complete blindness to all the choices parents impose and are allowed to impose on their children all the time while no one bats an eyelid, because they’re the “normal” choices. I find forcing children to adopt gender identity, ethnic identity and sometimes religion little short of violence and no worse than not letting your deaf minor child get a cochlear implant.
How do you feel about people who *purposely* create a deaf child, for example?
I recall reading about a pair of deaf parents who purposely sought out a deaf father for their offspring, because they wanted to genetically ‘engineer’ a deaf child.
How do you feel about that?
I don’t see how you infer that from my post. I agree that parents can enforce things on their children that are as bad, or worse, than any sort of “designer baby” modifications. However, one thing being bad does not stop a different thing from also being bad. (Perhaps the replies just got out of sync and you were replying to a different comment?)
No, I did respond to you.
One bad thing does not keep other things from being bad, of course not, and no one is suggesting that. But given that there are bad things that are being done to all children by everyone, including your friends, it makes me very uncomfortable to have focus directed to something equivalent but rare that just happens to be done by a disprivileged minority.
From what I have gathered reading autism-stuff, there’s some concern that if one were to treat autism in the wrong way one would lose some of the supposed benefits to the syndrome. I share these worries, but I am more wary about other conditions, like schizophrenia. Supposedly there are benefits to that too – and not just at the woo end, that creativity and such are depressed when treatments are performed seems to be a concern. In this case also the question of “self medication” plays and important role – in this case, by nicotine.
So I don’t regard it as an easy question for psychological conditions, because unlike a limb, our brain is so many interoperating neural organs, it is difficult to know. (And of course there are the endocrine functions, etc., etc.)
Well, you can see what happens if you give people who have these conditions the choice of medication or other treatment. They almost invariably take it. Even Kay Jameson Redfield, a physician who has bipolar disorder, and has also written a book arguing that such disorders can promote creativity, is treating her condition with lithium.
On the other hand, Oliver Sacks famously described the case of Witty Ticcy Ray, a Touretter who found medication useful for his nine-to-five cubicle job, but detrimental to his weekend gigs as a jazz drummer.
And Sacks’ book “Seeing Voices” discussed deaf culture and their feelings about it as well.
There is some fairly arcane form of brain damage that gives those who have it extraordinary abilities as lie detectors, an uncanny ability to read even the subtlest of cues to tell when anyone is not telling the truth.
So I suppose there is an issue of life-circumstance and what are the relative costs and benefits of a disorder and a treatment.
Which maybe helps explain the behavior of Gene Krupa and Buddy Rich?
I was unaware of Krupa’s behavioral problems, but always assumed Rich’s were due to his FEAS (flaming egotistical asshole syndrome). Now Jaco Pastorius, on the other hand… could definitely feel the problems lithium imposed on his creativity – and chose to self-medicate, mostly with cocaine & alcohol, depending on if he was down or up, respectively. Such a huge, huge loss.
My kingdom for a time machine. The medications for his disorder have come a long way in 30 years.
I don’t think there is a medical cure for violent bouncers in clubs.
There is also no medical cure for the geeks who want to inherit the earth from the neurotypical, the people who would prefer having a mental disorder over being a jerk, and the parents who want their kids to qualify for the diagnosis (of Asperger Syndrome) in order to have easy access to health services. They are the people of the Neurodiversity Movement.
And then you have people who take their medication, then decide they feel fine and don’t need to take it anymore. Some (a small number) of those people slip into violence.
If gay people in 1950 could have taken a pill to be straight, if trans people 20 years ago could have taken a pill to be cis, or if black Americans 100 years ago could have taken a pill to be white, how many do you think would not have taken it? The fact that most disadvantaged people would choose an easier life does not mean there is anything wrong with them. It can also mean the rest of us are oppressing them.
And it can also mean that the condition is not healthy, period, and that *no* oppression is going on.
Sometimes a cigar is just a cigar.
What if cancer makes you a better person? You love life more, and are nicer to people? Oh noes, the horror, what if someone had offered to give you a pill to cure your cancer! oppression!
*Nature* is oppressing them.
‘Disadvantaged’ means there is something they can’t do as well as the average person. It doesn’t matter how polite and PC we are to a one-legged man, he still can’t walk as well as the rest of us and never will.
There’s a fundamental difference between gay/trans/black, and ‘disadvantaged’ people. Gay/trans/black have no disability other than a socially imposed one. Physically disadvantaged people have a natural disability, not a social one.
cr
Perhaps you’ve forgotten Oscar Pistorius.
*Not* a good example, actually, even excepting the fact he’s a murdering psycho. He can run faster than most people (though if those springs count as allowable aids, why can’t someone just turn up with a racing bike and make exactly the same claim?), but can he *walk*? How does he manage with hills and steps? Can he climb a ladder? According to his own evidence, he felt so vulnerable without his carbon-fibre springs he had to start shooting up his flat.
Leaving Pistorius aside, I believe any one-legged person has to expend considerable effort in care of their artificial limb, its fitting, etc etc, and I don’t believe it gives them the same balance as natural legs and feet do.
My point is that blackness, gayness etc is a purely socially-imposed handicap and society can remove that by simply ignoring it. Whereas physical handicaps are not imposed by society and ignoring them will not make the sufferer regain equal ability to everyone else.
Many wheelchair using vets who are double-amputees do just fine getting around without it. (Including doing Jujitsu.) This notion that Pistorius was totally helpless without his prosthetics is ridiculous.
Let’s take a different example then: nearsightedness. Do you consider this a physical handicap that people suffer from? Are people who wear glasses or contact lenses objectively worse off than those who don’t?
It seems obvious to me that they’re not. Any difference in quality of life is in the noise, far overshadowed by other considerations.
So now let’s go back to your one-legged man. Suppose prosthetic limb technology were advanced to the point that wearing one was literally as painless, effective, and unremarkable as wearing contact lenses. Would you still insist that the one-legged man suffers from a handicap? Even if his quality of life is not measurably worse (and maybe even better) than that of most two-legged people?
I didn’t say ‘totally helpless’ but Pistorius himself claimed that he felt so vulnerable without his legs that he had to shoot his toilet door in case it was a burglar. Of course he may have been making that up.
I’ve never suggested that people with disabilities are helpless but I would say that (with very few exceptions) their disability means they cannot do the relevant activity as well or easily as a ‘normal’ person. That’s why it’s called a disability. I haven’t seen a wheelchair-friendly ladder yet.
A “wheelchair-friendly ladder”? They have them. And smarter wheelchairs. But I know what you’re saying…
@Gregory
I wear glasses – I’m long-sighted and at my age I’ve lost the ability to ‘zoom’ the focus. Presbyopia. It’s a minor ‘handicap’ that all old people get. I’m lucky that I don’t have any astigmatism so I can use cheap plastic ‘readers’ from the $2 shop, which is just as well since I’m always losing them or sitting on them. But minor though it is, it is still a nuisance to continuosly swap glasses from _+1’s to +3’s and back compared with the proper auto-focussing that I used to have. If I’m trying to do close-up work with my nose jammed in the engine compartment of my car the fact my glasses may fall or get knocked off is a big nuisance. So I am definitely objectively worse off (your test) than I used to be when my sight was fully functional. It’s not a major disability but it is an ongoing nuisance and inconvenience in all sorts of ways.
Re your suggested prosthetic limb technology, I think it’s fanciful. Also note that having feet (and not just legs) gives a big advantage in balancing. There’s also a huge advantage in the feedback signals from the nerves in your feet that let you feel what you’re standing on. I can’t see that being duplicated in prosthetics any time soon. And artificial legs of whatever sort are expensive and require an advanced manufacturing capability, which subject users to a financial and technical dependence that people with two legs don’t have.
Give me any example of a ‘disability’ you like and I can easily show that people suffering from it are worse off than people who don’t. This is kind of tautological – if the condition didn’t cause some inconvenience then it wouldn’t be called a ‘disability’.
But this is my point. If you’re going to define disability in terms of the inconvenience it causes, then it seems to me you must grant that being the “wrong” race or sexuality is a far worse “disability” than wearing glasses. (I’ve worn glasses all my life and regard it as no more inconvenient than brushing my teeth.)
I think this argues against your idea of a bright line between “socially imposed” handicaps that can be removed “simply” by fixing society, and physical handicaps that can be removed only by fixing the individual. Other people’s attitudes are as much a part of the environment as stairways and ladders, and often much harder to change.
We’ve now entered an era where people in wheelchairs have unprecedented freedom to go where they choose unassisted. They can drive cars and do their own grocery shopping and be self-sufficient in their daily lives just like the rest of us. Who cares whether they can climb a ladder? Part of what enables their self-sufficiency is the realization that they shouldn’t have to, that provision should be made for them to go where they need to go unimpeded.
A socially imposed solution has dramatically decreased the inconvenience of what you’re calling a physical handicap, and at the heart of that solution is an explicit rejection of the attitude of “you’re disabled; you should expect some inconvenience.”
@Gregory
A handicap is still a handicap, dammit. Even in developed societies that have gone to special measures (e.g. wheelchair ramps) to accommodate them, there are still a huge number of things I do every day that someone in a wheelchair can’t to. Like, walk on the beach, or clean out the gutters, or change a light bulb, or visit my basement… And in any other place than fully urbanised new-ish Western cities (like, the countryside, or the whole of Africa) they are definitely going to notice it a lot more.
Their ‘self-sufficiency’ as you call it is limited. Trying to pretend they’re not disadvantaged is just playing with words.
And don’t strawman me with the ‘is-ought’ fallacy.
I think this has gone round and round enough. Unless you’ve got something new I’m outta here.
cr
I’m not trying to pretend there are no differences. I’m trying to point out that it’s a difference of degree, not of kind. There is, and always has been, a continuum of human abilities, and the sharp line you want to draw between “normal” and “handicapped” is necessarily arbitrary.
And whether someone is disadvantaged depends entirely on the extent to which society is willing to accommodate their needs. Not all of us are good at math or bookkeeping; fortunately there are accountants we can hire to fill out our tax forms for us. Not all of us are good at changing light bulbs or cleaning gutters; fortunately there are people we can hire for those chores as well. I really don’t see why you insist on putting the light-bulb challenged (but not the tax-form challenged) in a separate category as less than fully functional members of society.
If you can’t give a principled reason for maintaining that distinction (other than “They’re handicapped, dammit!”) then I guess it’s best if we let it drop.
I’m not trying to draw sharp lines in what I know is a continuum. I’m just pointing out that there *is* a difference (of varying degrees) and – unlike blacks or gays – it’s not an arbitrary one invented by society. (Which was the fallacious comparison drawn invented by ‘cauliflower’ way back).
That’s all.
Not to mention that in the animal world, various disabilities, those ones imposed by nature, can in fact be deadly.
Are disabled animals ‘oppressed’ by animal societies or by nature? Is an animal that is born permanently blind a victim of oppression from other animals because they won’t care for it for the rest of it’s life?
Cindy: I hope you’re not suggesting that we use natural selection as a model of ethical behavior. Whether or not someone could survive naked in Paleolithic Africa is surely irrelevant to the question of how far we should go in removing impediments to people’s ability to function in 21st-century society.
Of course not.
My point is that people appear to be arguing that disabilities are only a figment of the imagination, created by malevolent forces that simply want to oppress others.
Is an anencephalic baby a victim of oppression because we haven’t yet figured out how to grow it a brain?
I don’t see anyone making that argument. Certainly I’m not.
for that matter, would it be oppression to provide an anencephalic infant with a brain?
I mean, a brainless baby is simply ‘differently abled’, no? I mean, as cauliflower explained, cochlear implants are an act of violence on the deaf, so surely if it was possible to grow a brain for a brainless baby, that baby would be subject to ‘violence’ because it’s ‘neurodiversity’ is being suppressed in an attempt to make it ‘normal’ like the rest of us who have brains!
Neurodivergent people are definitely socially disadvantaged, and would be much better off if they weren’t. People can find ways to flourish despite physical, psychological or neurological disability. Social disadvantage is much harder to cope with.
There is no such a thing as “neurodivergent people.” The social “disadventage” resides precisely in separating themselves from the group.
The neurodiversity movement excerpt also references what sounds like government social services. It is an easy call to provide support to people who may have trouble living independently because of some genetic condition. However, if a cure exists and someone refuses to take it, that brings up tougher questions about how much and whether society is still obligated to give that person the full gamut of support they received before the cure was available.
If a cure exists and somebody refuses to take it, then state-supplied assistance should be stopped and given to people who really need it (of which there are, sadly, always too many.
cr
It has become common to reject the notion of normalcy, but the neurodiversity movement would appear to miss the real differences between variation, functionality, and safety.
That’s it, in a nutshell.
I suspect your ability to do this so often is also what why you’re such a good cartoonist.
My late brother in law, who was schizophrenic, said to his mother one of the saddest things, “I am never going to marry and have children, am I?” It broke my heart. I am certain he wanted a cure. We all did.
The sister of a friend of mine had schizophrenia, after about 20 years of misery she committed suicide. The whole family would have done anything for a cure.
It is hard to imagine that someone nearly deaf would not want to hear well again. And with many old people the ability to hear is going away around the same time as some forms of dementia are coming into play. The combination is a very hard thing to deal with for the person affected and the people around them.
Yes. I never really suffered from being manic- I was actually a lot of fun. But it was sure an inconvenience to my family and friends who had to deal with all the loose ends. Which is why I stay on lithium.
I am going deaf and suffering consequent tinnitus. I can still listen to music but it has lost some quality and I can’t listen to it loud, my favorite hobby once.
It is quite isolating not being able to sit in a group of people and join the conversation. One on one is ok but groups are too hard.
I would give almost anything to get healthy hearing back.
Anyone who has listened to music, the best music of their choice, surely would not want another not to experience such a joy.
My mom has had tinnitus for years; I never understood how annoying and isolating it is, until I started having it. I get so tired of asking people to repeat things, and face towards me when asking something. And the mumblers… Music still sounds good, but I don’t think it will ever sound GREAT again.
It is interesting that when a physical symptom occurs we have no problem treating it. When a person gets an infection or appendicitis for example there is no discussion of whether or not this is “normal” (which it is) and therefore maybe there should be no medical treatment. That is unless the person is part of a religious group that applies wrong-headed thinking to cause and effect.
However, when it comes to the intangible like behavior and the mind, there is a problem with defining what is and is not normal despite the fact that there are physical causes (genetic and/or environmental) for the behavior.
The quote from Alex Lickerman:
“The issue is not how far from normal you have to be to be considered as having a ‘disease’. The issue is how much of the way your are ‘built’ is causing you to suffer—and what do we do about it.”
makes a lot of sense. It is a great rule of thumb that focuses on the reason for treatment and not side issues like the definition of “normal”.
There is IMO still a huge social stigma attached to the idea of malfunctioning brains that doesn’t attach to malfunctioning [other organs]. IMO this stigma means its much harder to get people to admit it when that organ may be malfunctioning, its much more upsetting and scary to us when it does, and thus its much harder to get people to treat themselves the way medical practitioners would probably suggest.
There is probably some realistic fear behind this sort of denial. I doubt you will lose many friends or job opportunities because you take a pill for your heart. But for your brain…unfortunately, maybe so.
I place the blame on the adherence to dualism. If you can choose to behave a certain way then it is your fault you have a mental illness. It is why I think spreading the determinism message is important.
Totally! It’s almost as bad as the old “evil spirit” trope.
This is right, but I think there is still another factor to consider – the one I alluded to above about autism, specifically.
Although it is not uniform, one characteristic of the autistic from what I understand is perserverance. So what’s the dividing line between stubbornness and focus on the one hand, and obduracy and inflexibility on the other. We’d perhaps ike to have greater focus (I know I would – it is one of the things I greatly admire in talented athletes and my higher achieving friends, for example) but where does it end? If one was a person who could really concentrate intensely and get stuff done, and the medication to cure the stubbornness (say) took that away, would you consider it wise to force someone to undergo that treatment in every case?
And that’s just when the good stuff is a lesser version of an awkward or unfortunate trait. If the symptoms of autism are due to some common cause (hormone, say) on many brain systems, then all sorts of different skills *and* deficits, unrelated to our classification, would be impacted.
With schizophrenia, I agree that research shows that people generally say that they prefer their condition overall. But that’s not *uniform*. What counts as a harmless delusion? (I don’t know.)
The nice thing with medication is you can stop taking it and in most cases no one forces you to be on it. Do I like taking medication that gives me hot flashes, night sweats and confusion? No, I hate it but I take it because it significantly lowers me getting cancer again. If at some point I decide the risk isn’t worth the suffering the pills bring, I can stop taking them.
There’s a very good reason to be much warier of modifying your brain than modifying your body:
Your brain is where all your fundamental preferences life goals are stored. Modifying it risks changing those goals, which is practically the same as killing you. So we should be much warier about modifying the brain.
Neurodiversity advocated make one very good point: Neurodivergences aren’t just about differences in ability to function. They’re also about having different preferences than other people. And advocates of “cures” have a bad habit of not distinguishing between the two. For instance, they have trouble distinguishing between autistic people who are unable to have good social lives because of disabilities, and autistic people who have better things to do than cultivate their social life and focus their efforts elsewhere.
You’ve talked ONLY about autism, but the movement is also for other disorders like schizophrenia, bipolar disorder, severe depression. Your argument is directed only toward autism, and only toward high-functioning autistic people. It just doesn’t wash for the rest of these disorders, which don’t usually impose “different preferences and life goals”. You’ve failed to address how, say, it benefits someone with schizophrenia to let them pursue different “life goals” (what are they?)
This is nothing new when it comes to identity. There are some deaf people who react quite strongly against someone gaining hearing because they don’t see it as a detriment. In some cases, there is a whole sub culture of the deaf who attend deaf schools and rarely interact with the non deaf.
Isn’t there a bit of a slippery slope here? Yes, extreme instances of, say, autism should be treated as conditions to be cured; if a blind person is objectively less functional than a person with sight, a person who cannot communicate with others due to autism is objectively less functional than a non-autistic.
But how do you define “normal?” Absolutely everything you describe could be applied to homosexuality as well, including the idea of some with the “condition” wanting to be cured. How is a functional person with some degree of autistic characteristics any different? Would it be better if autism was defined more strictly, and those with just some characteristics of autism expected to find ways to cope and get with the program?
I don’t see it as a slippery slope at all, and in fact I would treat both cohorts of people exactly the same: if a ‘cure’ was discovered for either autism or being gay, I’d say everyone is free to take it or not, as is their choice, and no organization advocating that group’s normalcy should be allowed to prevent people from taking it if they want to.
I believe mainstream doctors already do exactly what you suggest; assess pathology in terms of ability to function in society, and try to develop treatments that allow people to function successfully in society. They do not try and treat to make someone behave ‘normally’ by whatever arbitrary standard that may be judged. Nobody is trying to make the ‘deviant’ person like baseball or be a great conversationalist; they are trying to help them hold down a job, rent an apartment, pay the bills, etc…
But how would such a “cure” work?
Let’s take a step back here and look at things from an evolutionary perspective: why does autism exist? It’s either the result of genes–and I confess I know nothing about autism’s heritability–environmental factors, or some combination of the two.
Let’s assume that autism has a strong genetic component. Why would it persist? Do the characteristics of autism offer some benefit to society?
Let’s return to my example of homosexuality, which does have a genetic component. It can be argued–and there is some evidence to suggest this is true in some cultures–that gays and lesbians can provide greater support to the reproducing members of their family, improving survival rates despite producing no children of their own. Fewer children but a higher rate of children surviving to adulthood can be an effective evolutionary strategy, and so families with the genes that contribute to homosexuality might have an evolutionary advantage.
Could something like this be true of autistic characteristics? If so, it becomes even more important to have a clear cutoff point where a theoretical cure should not be applied, lest we deprive communities of personalities that offer benefits in addition to pressuring individuals to fundamentally alter the way they function.
“Benefit to society” is the wrong metric for why genes persist (unless you’re David Sloan Wilson). “Benefit to individuals carrying copies of that gene” is what’s relevant to natural selection.
But even if autism has a genetic component, it needn’t be adaptive. In other words, there might not be genes “for” autism; the genes might be adaptive for something else, but it certain combinations happen to yield autism as a byproduct (somewhat like sickle-cell disease).
I would think that’s only true for a species that reproduces asexually. In a species that reproduces sexually, the behavior (and underlying genes) of other members of the species is important, and even more so for social organisms.
Here’s an example: an animal (specimen A) has three offspring, two heterosexual, one homosexual. Another member of the species (specimen B) has three offspring, all heterosexual. Each heterosexual offspring reproduces at about the same time, with the same number of young (let’s say one each for simplicity). While specimen A’s group has fewer children, that places fewer demands on the adults to find food for the young and less pressure on the local ecosystem to support them. There is also an individual (or mated pair, or whatever) that does not have its own offspring, but instead channels its energy toward helping its siblings in raising their young, who are as a result more likely to survive. The improved conditions increase the odds that the breeding members of the species will be able to breed again as soon as possible. Specimen B’s group has none of those advantages, and would even face more difficult odds as it tried to support a 33% (in this case) population increase. Under these circumstances, specimen A’s genes may be more likely to be passed on. You could even argue that it helps specimen A survive as it is more likely to receive support that would normally be directed towards offspring. Played out on a large enough scale, and all other things being equal, the species might evolve to the point where a significant portion of the population is homosexual, even though the trait is not directly beneficial to the survival of an individual.
Whew. Anyway, without knowing more about autism, I’m not sure what characteristics I would pick out as possibly being beneficial under certain circumstances, but I think it’s a question worth asking.
But you’re postulating that the homosexual sibling helps the other siblings raise their children — i.e. provides benefits to individuals who are likely to carry copies of the gene. That’s straight-up kin selection, genes acting to propagate (copies of) themselves, not group selection for the benefit of the species.
Fair enough. But I think you’re overly fixated on my “benefit of society” reference. I was using society to refer to the vast swathe of humanity. That is, the group that would be making the determination of how or if to use a theoretical autism cure.
If, at a high level, we are debating the merits of eliminating a genetic variation in order to control or eradicate a trait or set of traits, I think it is very much valid to question whether that trait has any overall positive effect on the population as a whole. Even if the mechanism by which it is perpetuated operates at a family-group level.
If, at a high level, we are debating the merits of eliminating a genetic variation in order to control or eradicate a trait or set of traits, I think it is very much valid to question whether that trait has any overall positive effect on the population as a whole.
Symptomatic treatments (so for example, a drug-based ‘cure’ for autism like lithium works for bipolars) doesn’t change anyone’s genes and so doesn’t impact human variability. In fact it probably increases human genetic variability. Frankly I thought that’s what you were talking about.
But if you were thinking more Gattaga-like stuff or talking about genetically designed children, yeah, there are both bioethical and evolutionary issues with such “treatments.” Though frankly even in those cases I’m not sure there’s much to worry about. Let’s face it, for the past 500,000 years or so humans have practiced a form of ‘artificial selection’ through infanticide or death-through-neglect of children they didn’t deem healthy. If we start selecting or altering our children at conception instead, through genetic manipulation, I doubt the consequences will be qualitatively different from what we did in the past. I’m not saying those past practices were a good thing – I don’t think that at all – but I am saying that we already know what a primitive form of artificial genetic selection looks like, and it looks like us. That gene pool truncation you’re worried about…it leads to gene pools like what we have today.
I think you’re steering close to the naturalistic fallacy. We should not deny people medicine on the basis that there is an evolutionary advantage for the community when they have a few percent of that type of person in it. Whatever benefit “communities” get from individuals being the way they are sans treatment, the individuals should still have a legal choice on whether to take it.
My concern is that, if made available, any cure for genetic variation is going to be given to children who will not be able to make that determination for themselves.
For obviously debilitating conditions that’s fine. But I would imagine that many parents would start treatments simply because they personally find certain traits undesirable, not because there is any evidence that those traits impede happiness or functional ability or cause harm to the greater population.
If there was medication that could dial back autism, think how many kids would be subjected to treatment just for exhibiting the slightest deviance from the norm. We can already see that in regards to hyperactivity, and I see no reason to expect it to be different for other traits that some view as undesirable in all instances.
Yep, sorry, I only figured that out after reading some posts you made to others. See my response to yours to Gregory Kusnick for my opinion on this particular subject.
As so many things really are, this issue isn’t amenable to being reduced to a generalized SOP that can be uniformly applied to all cases. Any policy(ies) dealing with this type of issue will have to be flexible and adaptable to individual cases if a primary goal is to be as fair as possible.
Probably the most important thing is that in any case where the person is deemed capable of being legally responsible for themselves, their decision to be treated, or not, has to be respected (in the legal sense). Of course, that in itself is in the same category of issues.
I don’t have any of those “disorders,” but I do have an MA in special education.
I was taught in the early 70s that things like autism existed on a spectrum or a distribution curve. We did not have the term Alzheimer’s, but we were taught that such a condition existed on a continuum.
Some of these conditions cause a lot of suffering for the person who has the condition, for those who live with the person or care for the person, or all of these.
A small, but significant percentage of people will never be self-sufficient in the usual sense of the word, unless we have some breakthroughs in treatment or education. Some “differences” respond well to cognitive behavior therapy. Perhaps better than to medication.
A possible consequence of relabelling conditions as normal would be removal of financial help for parents who genuinely need it.
Many things exist on a spectrum, but that does not make them good. You can have mild arthritis, you can have devastating arthritis, it’s still a disease.
As a parent with a child on the autism spectrum, I 100% agree with you. Accepting people with autism is admirable. Romanticizing it by calling it “normal” minimizes the very real challenges and suffering that results from autism.
My biggest frustration is with family members who dismiss our struggles as a family. Treating my child with respect is something I treasure. Expecting them to be a “genius” or just another “normal” is to not see them as they really are…
I have a nephew with Aspberger’s Syndrome. Thanks to a lot of excellent treatment and therapy he’s become a bit of a poster child for how such kids can be helped. Nowadays, most people wouldn’t even notice anything “different” about him. Before his diagnosis, his parents were in despair, and as he became more self-aware, so was he. They knew something was wrong, but they didn’t know what, and nothing they did helped.
Now he’s a wonderful young man, doing well in school, playing sports, going to parties, having girlfriends, and pretty much doing what you expect of a teenage boy.
I keep spelling Asperger’s wrong. I’ve done it below too. I must’ve added it to my dictionary wrong sometime.
my ex’s child was evaluated after multiple issues at school (and at my urging, though that was met with fury, at first) and we were overheard discussing the diagnosis, which led to him repeating, loudly, ASS BURGERS!
😀
Me too and my iPad doesn’t stop me. I swear it just tries to make me look bad sometimes.
Aspberger – a snake patty, grilled or fried.
/@
yes…I am so amazed at how much progress my kiddo has made. The amount of hard work and educational intervention has made a world of difference.
So good to hear about how well your nephew has done!
Thanks, and great about you too. A lot of it will be down to you – the way parents handle it and the effort they put into it makes a huge difference.
I see some of the other kids with a similar diagnosis to my nephew when he’s staying with me, and I worry for them; their parents don’t seem to be reacting to their kids in a helpful way. Of course, I’m not there all the time and they could be one off situations, and no one can get it right all the time, but it makes me sad nevertheless.
+1
> “The neurodiversity movement is utter nonsense. Ask those who have these problems whether or not, if a cure was offered, they would accept it.”
There is an excellent documentary by Stephen Fry on bipolar disorder, “The Secret Live of the Manic Depressive”, where he asks his interview subjects who suffer from that condition exactly this question – but apart from one, who’s condition was really extreme, all said they wouldn’t want to be cured. Treatment, yes, but not a switch-off.
My wife is a psychiatrist who specializes in Bipolar. When manic, her patients describe the feeling of euphoria, energy, creativity, and they don’t want it to end, so they stop taking their meds. Of course, it always ends and the pendulum swings toward depression. The goal is to even out their moods, but if you can manage a modest manic state, that is ideal for them.
that is the danger, and that feeling of euphoria, energy, creativity, isn’t as great as described. There might be lots of energy, 36 hours awake, but it isn’t focused and isn’t any magical creativity, rather like how folks on weed think they are so deep and creative and haven’t produced much at all.
I got sick and tired of telling a person I used to be close friends with that having, what she called “a break down” was not carthartic. You were just now very ill and still had all the issues of daily life to deal with, including keeping a job and/or going to school. She really pissed me off when she’d say she wished she could have a breakdown but she was “too strong”. I wanted to shove her on to her ass and shout, “whose more fucking strong now!” Instead I ended out friendship.
I am not sure how to express support here, but, yes, indeed.
“Too strong” eh. Really?
I can’t speak to bi-polar or depression but with autism the current research points to it being autoimmune based.
Which is why things like LDN and the GAPS diet work so well with autistic people, I do not think a “variation in the human genome” would be treatable by diet.
I do have a friend who is bi-polar and he has gotten an incredible decrease in symptoms since going ketogenic.
I don’t see any problem with the symptoms of a condition, the cause of which has a significant genetic component, being treatable by a change of diet. Things that are ingested, like food, drink, air-born things, drugs and medicines can all have significant impact on various body functions, including cognitive functions. It is all chemistry. There are plenty of genetically based issues that are treated chemically, with drugs.
In your comment you provided one such example, bi-polar.
Also, the evidence is fairly solid that autism is a result of non-standard development of neural connections in the brain during early stages of its development. This process is genetically driven, so though non-genetic environmental factors are most definitely relevant, it does seem very likely that there is a significant genetic component to the cause of autism.
One (initialism): PKU.
Pseudoscience alert!
My response also. It doesn’t gel with my experience.
I can only speak for myself when I say that on the neurodiversity spectrum, if I had the choice, I would choose to be more intelligent rather than less or equal to my current IQ, I would choose to be far less anxious than I am now, and I would choose “normal” happiness over my moderate depression. I seriously doubt any person on the autism spectrum would choose to remain so if they were capable of changing their situation, assuming they understood the difference. I can say from personal experience that those who do have an understanding that they are different do not want to be. It is heartbreaking when a young teen says they wish they were normal and didn’t have issues. This is usually in response to having a crush on someone else in high school who is not on the spectrum and it’s enough to bring me to tears when they express this feeling of understanding their difference as well as their isolation. Shame on the SJW’s who dare to ignore the feelings of those that are actually dealing with being autistic.
Yes. I said above that my nephew has become a “poster child” for what can be achieved, but he would change having Aspberger’s in an instant if he could. It’s heartbreaking.
There’s another well-meaning but odd idea that floats around the developmental disability world, that of attempted to explain all “geniuses” of the past as being on the spectrum. So many times I’ve sat through training and staff development programs that assert that people like Newton, Einstein, Thomas Jefferson were on the spectrum, or that most mathematicians are, or people who work in museums. All based on the fact that they are driven to study one thing or related things in great depth, almost to the point of obsession, or that they constantly classify things or organize things, or just because they are good at math or are bad with people. Yes, some famous scientists may have or may be on the spectrum, and some mathematicians or museum curators, and those may be great, accepting places for people on the spectrum to work as they tend to value results over charm and personality. however, the attempt to shoe-horn these people into the movement I think reflects not a real diagnosis (it’s a long, drawn out process that requires multiple tests and professional evaluations) but the desire to “prove” their kid may go on to do great things just like famous person X. Maybe, maybe not, but let’s stick to the facts instead of well-meaning desperate grasping at phantom hopes and wishes.
I think you’d have better luck looking at engineers. It’s practically the career of choice for Asperger’s types. (I am married to an Asperger’s engineer, so is my best friend).
+1
I have Asperger’s and thought this was an interesting post.
The neurodiversity line has been repeatedly pedaled to me by the medical profession – I shouldn’t worry, because everyone’s different and my way of thinking about things is just as valid as everyone else’s.
And to some degree I think that’s a humane message and I’m sure it’s done with the best of intentions. It’s also a message which has been embraced by many of my fellow Aspies.
And let’s not forget, there can even be some benefits to this condition. People with high IQ and Asperger’s often excel in fields like computer programming and engineering. Wouldn’t surprise me if we’re also much more likely to be atheists – but I don’t know what the data is on that.
But, I also agree with Prof. Ceiling Cat (if that’s his correct title) here, that treating all parts of the spectrum as equally valid runs the risk of ignoring the very real and significant problems associated with Asperger’s and other conditions. For instance, I’ve suffered from a life-long depression probably due to my difficulties in negotiating social interactions.
As usual, I don’t know what the answer is. I think that Asperger’s really can be a disability and yet I would bristle at being thought of as inferior. I guess I’d think of myself as different, with my own set of problems, but no less human than anyone else.
I don’t think anyone (at least here) thinks that sufferers like you are “less than human,” only that if people want help for such conditions, they should be able to get it, and researchers should be trying to develop medical or psychological ways of helping.
Thanks. Sorry, if that sounded like I was accusing you or others here of thinking that people with Asperger’s are less than human.
My foot in mouth, as usual!
Hey, no worries! I tend to stick my foot in my mouth AND have my head up my butt at the same time! 😁
oops, that was me, on the smrt phone, don’t know what I did to become A. Nony Moose.
it’s almost as if I wanted to prove my point…
ok, I just replied to my anonymous posting above saying it was me, not sure how I became anonymous, and then that reply failed to show up. and I noticed that there’s a capital/lower case Q difference depending on my iphone vs laptop posts…
all proof that my head is fully wedged right on up there!
Me too, I agree 100%.
I will bristle every time I hear ‘disease’ or ‘disability’ used as a blanket term. Being on the spectrum CAN be, but it depends on where you lie on the spectrum, the resources you have at your disposal, the resources and upbringing you had as a child, etc. etc.
A commenter above said, “Many things exist on a spectrum, but that does not make them good.” Some thing are hard for me, some things are very easy. The things that come easy helped me get a very high paying job for which I expend very little effort. If a magic pill came along that eliminated both the advantages and disadvantages, I would refuse it. That is just me – there are people and families who suffer terribly and for whom the magic pill would be a ceilingcatsend.
Also worth noting is that you would refuse (it seems to me, based on your comment) the treatment for entirely pragmatic reasons, not out of some sense that treatments in general only serve to foster alterity.
Yeah, once I realized that being normal in math would probably mean I’d be mediocre in language, I accepted my math disability.
“ceilingcatsend”
++
My husband is a happy, successful, Aspy engineer. But the suffering he went through in school is something he’d have loved to avoid if possible. A pill to improve his social skills would have been very welcome. Probably still would be.
I’d take that pill! But I think I do ok. I have to hold in my smart ass remarks and that is my blessing and curse. Blessing in that I enjoy the inner dialogue, curse in that sharing it could be detrimental.
I like hearing smart ass remarks.
Thanks for your perspective as someone with Aspbergers. I always thought that it would be absolutely exhausting to negotiate social situations as someone with Aspbergers because I have my own social anxieties which used to be much worse than they are now so I can only imagine how hard it is to deal with all that when theory of mind is not there to help.
I’d say that sociopaths also suffer and I’m sure they do but since they don’t require social acceptance and they can find other ways to amuse themselves (sometimes to the detriment of others), they probably can do well if high functioning.
I do not think of aspies as inferior and I Think you can see it as a disability or at least some aspects as disabling without suggesting it is a condition of inferiority. Perhaps this is why the medical community sees the condition as another way of thinking.
I wonder whether the issue is that two slightly different meanings of “normal” are getting conflated. There is “normal” as in “average” – if everything worked out the way it was “supposed” to (in a product-of-evolution sense) and then there’s “normal” as in “expected” or “not unusual”. The former is arguably a standard against which few would measure up, as we all carry a lot of recessive loss of function mutations. The latter is clearly a continuum and so where you draw the line in arbitrary and should probably be context-dependent.
The fact is, it is perfectly normal to have a disability, especially a mental one. Just as it is perfectly normal to have a physical disability. I have red-green colour deficiency. Many people have poor eyesight. Rather than trying to brand everyone as “normal”, it might be more productive to brand everyone as disabled. The level of help/treatment (if any) is determined by the nature of that disability and our own desires. The crucial thing is that we fight any concept that “disability” means “less than human”.
I work with kids with various behavioral difficulties, including with several kids with autism. Here in Germany, I wish *some* aspects of the neurodiversity movement would get more recognition.
I regularly deal with teachers and therapists of various kinds who see autism, essentially as a form of handicap or an illness; as if something is fundamentally wrong with the child — as if there is a healthy child in there somewhere who can’t express or show itself.
I’ve even seen Christian carers in a home of handicapped kids where an autistic child (from a Muslim family) was living — they whispered to each other that they would baptize him and his behavior would improve. (Yes, I did have a quiet word with them!)
And being seen as a sickness means there must be a cure — hence there are all kinds of insane therapies that are in essence various forms of exorcism — exposing them to fairly extreme temperatures, prolonged, unwanted physical contact, forced to stop certain “autistic” activities even though they don’t disturb anyone… These kids, in particular the non-verbal ones, get turned into human guinea pigs for all kinds of idiotic and dangerous treatments. When I speak about their having rights, some people look at me as if I’ve just done a backward somersault in mid-sentence.
And seeing autism as a sickness makes teachers etc deficit oriented — they only see the things a kid can’t do. They assume that there’s nothing going on inside a kid’s head beyond gibberish and rice-pudding. They don’t realize that the child is in fact working very hard to figure out how the world works. The key to working with them is finding out how they see the world and finding a way to interact with them in that “language”. Teachers who think the kid just disturbed miss chances like that because they don’t even know they exist.
Seeing autistic kids as a different kind of normal *shouldn’t* mean that their problems are ignored or denied. But what they need is exactly what “normal” children need — socialization: learning to deal with others, with themselves, managing their emotions, finding things they like doing, becoming as independent as possible etc.
all good points. I’ve actually had quite a bit of the opposite, in that parents and teachers I’ve worked with often exaggerate the abilities of the students. Some I’ve worked with, primarily the most severe, with multiple disabilities, did little more than react to stimuli but the belief was that they were making active decisions and interacting with the teacher or therapist. That’s fine in a way, after all we all want to feel like we are helping the student, but at the same time, it doesn’t hurt to be honest. They need to be fed, changed, kept comfortable, clean, and treated with kindness and respect, but they are not going to get much out of art work on a museum wall and that’s ok!
Yes. Based on my experience, it seems doctors and therapists feel considerable pressure to come up with positive prognoses, often at the expense of being 100% honest and frank.
As a parent of a kid with special needs, I’ll take frank reality every time. I can provide my own positive spin, but I need to know what to do for my child.
I still see this as a dualism problem. If the children had cancer,mine care givers would recognize that they may not survive it and would concentrate on making them as comfortable as possible. However, if it is something to do with the brain, it is seen as something the child can snap out of because there is that “normal” child in there.
So, I don’t think the issue is with labelling something as a disease but nine faulty logic that says we are ghosts in the machine.
there have been some promising treatment ideas, at least a few years ago, i’ve not heard anything recently, about the possibility of helping boys with Fragile X, which is similar to autism (or is considered part of the ASD). The problem is, at least one would think, that neuroplasticity can only go so far. If whatever new treatment doesn’t occur early, during or prior to key developmental windows, then there may be only so much that can be “fixed” and there may never be a “normal” child in there after all. There may be a better adjusted, higher functioning person, perhaps someone who can hold a basic conversation with strangers (difficult to impossible with boys with Fragile X) but I can’t imagine a true cure, just a regression or prevention of worsening issues.
what really bugs me, and I’ve seen this, is the quackery around fad diets and other “miracle cures” a la Jenny McCrapy and D’Ohprah. Unless your kid actually has a tested and verifiable allergy to gluten, and tested by a REAL doctor (not one who lost his US license and is now practicing in Guatemala via the internet) then there is no need to waste your money on expensive rice flour breads or macrobiotic fru-fru Whole Paycheck brand garbage. Prayer won’t help either. Please stop dressing your child in “Jesus Loves Me” T-shirts.
This has been an interesting discussion and post, Thanks Prof. Ceiling Cat!
Prof. Coyne —
You might want to take a look at this forthcoming book by my good friend Steve Silberman and then revisit this topic:
http://www.amazon.com/NeuroTribes-Legacy-Autism-Future-Neurodiversity/dp/158333467X/ref=sr_1_1?ie=UTF8&qid=1435087875&sr=8-1&keywords=silberman
Best,
Ken
I think attitudes like this are attempts to combat discrimination that have been forced off the rails by a form of denial. Just because something can be described as a “way of being” doesn’t mean it doesn’t deserve our remedial attention. In fact everything is a “way of being”. Breast cancer and Alzheimer’s are “ways of being”. I’m doubtful in the extreme that asserting “disability is not disability” and getting in the way of those who develop, provide, or seek therapies will actually normalize the disability in the minds of the masses. And what a slap in the face to those who do develop and provide treatments. Who knew they were actually engaging in “gross, ableist” hate crimes?
Eric’s reply to Cindy pretty much sums it up: if you consider your condition to be part of your identity and don’t want to do anything about it, that’s great. But why do you think you deserve to close the door on others who do want to seek treatment? Appeals to a “culture” and what “they” want seem to me to be extremely tenuous at best. It’s up to the individual.
It is up to the individual to a point, don’t ask me what that is but this is an actual case and I’ll try be brief:
A young man (1) in Auckland seeks a flatmate, another young man (2) answers his advertisement and moves in.
Not long after, young man (1) is dead after young man (2) deceives his case worker and stops taking his meds. It was a gruesome death.
His new flatmate was schizophrenic and because of the privacy laws he (1) was out of the loop. In other words, he never saw it coming.
Needless to say this didn’t help the general population of their understanding of schizophrenia or mental health care.
This happened when there was a big shift in psychiatric care, they closed hospitals and psychiatric wards and placed patients back in the community. Part of the drive to normalize mental health and reign in centuries of bad PR for the mentally ill, fear of these conditions, to put it bluntly.
I’ll add, the appropriate health officials worked hard and we haven’t had a case like this for awhile now. I also accept this as a genuine move towards making neurological disorders familiar and an everyday condition we can all work and live with.
Some individuals though, clearly cannot be trusted to their own health or for public well being.
Well, yes.
As with anything, self-determination can only be taken so far. Anyone’s rights to do as they please are not without limit.
My comment assumed an individual’s right to choose as long as the safety of others was not a concern.
I should add that part of the point I was trying to make in pitting the “culture/they” against the individual was that people with certain conditions or disabilities shouldn’t be peer-pressured into a decision one way or the other. The subject of this post strikes me as trying to create peer-pressure to forego treatment.
Per your last paragraph, I agree too.
Regarding “deaf culture” I wonder if there is a distinct difference between those who don’t want a cure and those that do. Perhaps people who are born deaf are more likely not to seek a cure than those who have become deaf after having lived with sound.
Either way, I agree with PCC that neurodiversity seems inimical. Regardless of the movement, I’m sure scientists will continue studying the brain to find answers to the many mysteries it holds. We’ve come a long way in the neuro sciences, and hopefully one day there will be a cure for many neurological problems (for those who seek a cure).
As an aside, I remember reading Philip K. Dick’s novel Martian Time Slip in which a doctor’s theory about mental illness was that it was caused by altered states of time perception. Woo, for sure, but for some reason it has always stuck with me.
Well, as far as I can recall from my coursework and from Oliver Sacks’ “Seeing Voices”, yes, there are some differences, and like all humans, a tendency towards tribalism. Pre- and Post-lingually deaf persons may not always agree on what’s best and may not trust each other fully. The sticky issues arise when there is a child involved and the parents (where one or both are deaf) disagree on cochlear implants. At least things have gotten a great deal better now that there’s been a move away from Thomas Edison and others forceful argument against sign language and the insistence that the deaf community learn to speak and lip read. They certainly meant well, but it really set the deaf community back decades.
People in the Neurodiversity Movement call themselves “autistics.” They fancy they have autism, but there is nothing wrong with them, neurologically speaking. Psychologically is another matter.
Parent of Autistic child here (ASD).
The very “spectrum” issue of these conditions make for a hard subject, but in general I agree with Prof CC’s post.
Insofar as there are conditions that do cause individuals to suffer (wherever on the spectrum they may be), we should be trying to
offer help, medically, therapeutically, etc.
So at least it’s there for those who want it.
As for neurodiversity, on one hand there is some level of appeal to my son, and to me as a parent of someone on the Autistic Spectrum.
Insofar as neurodiversity implies acceptance
of outlier conditions, that sounds great. I want my son to be “accepted” and…accepted for who he is. He feels the same way. So to a degree a sort of neurodiversity idea is helpful in assuaging some of the anxiety my son can feel. Like so many kids, especially his age (13) he desparately, desparately does not want to be “different” or “defective.” Taking a sort of neurodiversity view, reminding him that everyone is different and we all have our quirks and challenges in different areas, helps him feel more accepting (sometimes) of his own challenges (which tend to be mostly: maintaining attention, a sort of awkwardness and trouble negotiating social cues).
On the OTHER hand, it’s well known that people who have been suffering a feeling of “something is different,” and problems related to it, often talk about what a relief it is to finally have that difference diagnosed and acknowledged (I’ve read this from various people on the Autistic Spectrum).
So when my son feels desperate to understand “why am I like this, why is this so hard for me?” it is helpful for him to accept and understand his diagnosis. It’s a very tricky balance: to both support your child
in flourishing and being happy with himself, as he is, while making sure he is aware of challenges he has, areas he will have to work on if he wants to fit in as smoothly as people without ASD. You want to assure that the challenges are “real” but not promote a sense of fatalism like “So I can never alter this or improve this about myself.”
On the question of suffering and would I want my son cured (and would he want to be “cured”): That’s a tough one, because I’m so crazy about my son as he is. To me my son is more than I could ever have asked for in a son and it would seem absurd to say “I want better!” But…my son DOES suffer on account of his Autism. He is extremely ambitious, socially, insofar as there is nothing he enjoys more than being with other people, part of what is going on. But we’ve gone through times where there has been a lot of tears and fear on his part, where kids just aren’t accepting him, and his deep fear this will always be the case and he’ll end up being alone all his life. Throw in many bouts of crippling anxiety which often comes along with being on the spectrum, and, yes, my son and I would welcome any medical or therapeutic advance, more efficacious than currently offered. (Though, when talking about suffering from how your mind actually works, there is always the fear of loss of self in the “cure,” and even as a parent I feel some of that anxiety as well).
FWIW…
Thanks for these comments.
My daughter has (fairly mild) cerebral palsy, and I share your desires and concerns regarding acceptance. But that’s precisely where I think “neurodiversity” as it’s described above goes wrong. There’s nothing about recognizing a need someone has that equates to non-acceptance.
“There’s nothing about recognizing a need someone has that equates to non-acceptance.”
Well put and I agree. It’s not that I would want my son’s differences, his struggles simply ignored.
On the other hand, I also think the crux of the issue of this thread is buried in the “recognizing a need” part of your sentence.
Some are challenging the idea that we should see atypical people – Autistic, Deaf, what have you – as even *having* a “need.”
And if you’ve ever wanted to see, though, the rabbit hole this leads down try googling “ableism” and look at some of the fiery attacks that go on over that idea. I’ve seen one SJW forum where someone was attacked simply for praising some of the comments as intelligent. He was lept upon as therefore promoting “ableism” because praising someone for intelligent comments is to privilege the intellectually able over someone “less intelligent” or with some impaired mental faculties. (Sorry, even “impaired” is ableism…how about “different” mental faculties).
Vaal and Musical Beef,
I always appreciate comments from those who are closest to the issue. (also makes me nervous about anything i had said in case I said something that was patently stupid)
Also glad this didn’t devolve into the stupidity like your “ableism” forum. I’ve wasted enough hours listening to people argue about the most PC of the PC words to use about people. Disabled vs handicapped vs handi-capable vs differently-abled vs mentally disabled learning disabled vs intellectually disabled and so on, to the point where everyone is angry and offended.
One thing is for certain, like autism, being an asshole is also a spectrum.
Perhaps the anti-vax movement deserves some blame for any perception of non-acceptance. For them it seems to be axiomatic that autism is a Horrible Disaster on par with Thalidomide babies, for which somebody must be blamed.
Do you think that’s why the neurodiversity movement stressed the underlying genetics as the cause? (Would it be any less “normal” if it was a product of the enviroment rather than genetics?!)
this attitude that everything is “normal” is just as ignorant now as it was when the idea of being deaf was paraded as “normal” to resist the idea of cochlear implants.
My husband is very bipolar. To try to claim we shouldn’t have those drugs that help him is damning people like him to misery and death.
To claim that everything is fine just like watching some damn stupid theist insisting that his/her god uses everything for some “greater good”. it’s a great excuse for doing nothing.
A lot of these people seem like young Tumblristas who’ve self diagnosed themselves in order to achieve the coveted special snowflake status.
I have Asperger’s and am currently being screened for bipolar disorder, so this one hit close to home. In my obviously anecdotal experience, most Aspies are reasonably happy with who they are, but wish the world was easier to deal with. In other words, the problem isn’t with themselves but with a world that doesn’t understand them. Personally, I have been reluctant to treat my Asperger’s because I am afraid of losing some of myself in the process. This isn’t to say it hasn’t given me grief–I have three ex-wives who gave up on me–but I like who I am and I don’t want to change. On the other hand, my depression/bipolarism is becoming debilitating, so I am doing something about it, but it’s complex. So far, the standard treatments are working very differently than normal; for example, an anti-anxiety drug made me extremely jumpy. I am afraid that my Asperger’s is partially to blame for my depression, so I may be forced to choose between happiness with mediocrity or depression and being an outlier (my extreme concentration is a wonderful asset).
Three ex-wives? well, you’re doing better than me, I could only find one who’d stoop so low as to marry me, and I’m “normal”(ish)!
I can understand the issues around treatment, my one attempt for my depression/anxiety went badly and I quit early, but then they didn’t do much more than try to sell me some damn book to read. I’ve got plenty of hangups about possible medications, you know, just enough information to be dangerously skeptical but not enough to make an informed decision. and I can’t get over the fear of actually openly admitting to needing help and what taking meds every day forever will make me feel like. but,it is affecting my employment, my relationships (lack thereof), and my aspirations, so at this point in my life, I’d gladly accept “happiness with mediocrity”, it’s better than my emptiness with pathetic failure! (and I don’t have any “wonderful assets” either)
Hang in there Topher, we’re all pulling for you!
“In my obviously anecdotal experience, most Aspies are reasonably happy with who they are, but wish the world was easier to deal with”
That rings true to me, in terms of my son’s experience (more often it’s that he wishes to be accepted, not that he wishes to change), and from other’s with Asperger’s that I know. (My son is not diagnosed Asperger’s though).
“I’m aware that there’s a “deaf culture” movement, in which some people who can’t hear claim that they wouldn’t take a cure for hearing loss were it offered”
What, and settle for never hearing Beethoven or Dire Straits? I suspect this is just a case of ‘they don’t know what they’re missing’, possibly reinforced with the tendency of humans to ‘make the most’ of their situation.
cr
I have Asperger’s Syndrome, an autistic condition possibly shared with Newton, Darwin and Einstein (as well as Mozart, Beethoven and so many others). There is no doubt that I succeed in the intellect – even ‘genius’ – stakes, but there are so many ‘downs’ that I label it ‘my curse’.
I know it’s not a ‘curable’ condition (and thus should not – perhaps – be seen as a disorder). But I really do wish people had understood the things I can and can’t do better than they ever did. And I wish it were regarded as a condition that can be alleviated by sensitivity.
On a related note, the relationship between gut bacteria and anxiety/depression and autism:
http://www.theatlantic.com/health/archive/2015/06/gut-bacteria-on-the-brain/395918/
“But I really do wish people had understood…”
And this is really the crux of it.
There are people who can just be themselves in social situations and there are people who must work to varying degrees to “act like” themselves, and I’m sure the former would be surprised by the number of the latter. I think the ‘disability’ label makes it easier for normals to carry on with their usual expectations of social interactions: it is up to those ‘disabled’ to find ways to overcome their problems and interact with others in the ways that adhere to ‘normal’ peoples’ expectations.
Just a little bit of understanding would go a long way. For example, I dread phone calls. Many of the people I deal with have learned to use other forms of communication, but some still insist on the phone and it can be an absolute train wreck. Even close friends rarely call because it can be so awkward. “Uh, are you still there?” I’m never entirely sure when they’re supposed to end. One time the person on the other end and I sat in dead silence for 10-15 minutes because we both thought the other one was looking up something offline.
Hi, Dr. Coyne. I love your blog, but I think your take on this issue is broadly mistaken.
I am researching neurodiversity for a short e-book I plan to publish later this year. It is unfortunate that Dr. Coyne’s only resource for neurodiversity seems to be the main Wikipedia entry, which I found to be an impoverishing resource.
While neurodiversity is certainly a kind of advocacy, it’s inaccurate and to lump neurodiversity into “identity politics.” The analogy to homosexual rights is much more apt.
As for the notion that neurodiversity fails to recognize the possibility that such conditions could be disabling or pathological, that’s untrue. Neurodiversity accounts for the distinction between high-functioning and low-functioning individuals. There’s scholarly disagreement about where to draw the line between high-functioning and low-functioning, but most accounts Here a quote from a highly-cited scholarly article on neurodiversity from 2012:
“The broad version of the neurodiversity claim, covering low-functioning as well as high-functioning autism, is problematic. Only a narrow conception of neurodiversity, referring exclusively to high-functioning autists, is reasonable.”
The author endorses neurodiversity but recognizes the limits for low-functioning individuals. Both beliefs are compatible, Dr. Coyne.
It is also untrue to suggest that neurodiversity proponents don’t support scientific research into treatments of autism spectrum disorder. They emphatically do! I work in a neuroscience lab that studies autism genetics and neurobiology in mice, and we receive funding from the Simon’s Foundation, an organization that features neurodiversity advocates.
“the main Wikipedia entry, which I found to be an impoverishing resource”
Impoverishing or impoverished?
You know that anyone can update a Wikipedia article, dontcha, greg?
/@
Dear Greg,
The understanding of “Neurodiversity” as a movement is according to some quite impossible because there is no neurological reason that could be scientifically proved to support it. Each individual is unique.
Most of the people in the Neurodiversity Movement are adults with a diagnosis (or self-diagnosis) of Asperger Syndrome, which is not properly autism.
Although there are still many professionals who consider Asperger Syndrome (also known as AD) a less severe form of autism, it was added, in 1994, to the DSM-IV as a separate disorder from autism. But to be sure every person with classic autism differs from every other and every “Aspie” (as they call themselves) from all other Aspies, nevertheless one can tell a person with autism from a person with AD.
People in the spectrum of AD have autism-like behaviors and difficulties with social and communication skills but normal intelligence and language development. In Neurodiversity, I think of Ari Ne’eman, co-founder of the Autistic Self Advocacy Network. He was diagnosed with AD at age twelve. His “autism” manifests itself in the effort and energy that he needs (I quote) to act more normal in a nonautistic world.” He speaks of the stressful and anxiety-provoking experience that is for him to make eye contact.
To my way of thinking, Asperger Syndrome does not exist.
When you are diagnosed with AD, you have two choices: 1) you would decide to question and/or reject the diagnosis on the basis that a) the diagnosis criteria for AD could actually apply to “anyone” in society; and b) you are not a prisoner of this condition and can therefore overcome the autistic traits by learning, for example, to look people in the eye when you talk, or to understand body language or to tell funny jokes.
Or
2) You would decide that your “symptoms” are unique traits of personality and separate yourself from the world, calling yourself from then on “autistic,” and determine that the world is divided (which is certainly fictitious) between autistic and nonautistic. Be autistic is therefore a matter of choice.
People in the Neurodiversity Movement have chosen option two. Why? I do not know. Perhaps, it could be explained from the point of view of either psychology or sociology, but in the end, every choice is personal. And every human being is inscrutable.
Forgive me if someone else has made the point, I did not wade through the 100+ comments above.
The question whether these conditions are normal or a pathology is practically metaphysical. To label a person as being “sick” means nothing: there is only the question whether this person needs something to achieve a goal (a goal, perhaps, of being more functional in our society). If they need something, then they can ask various institutions (medicine, schools, etc.) for what they want. This also includes family members when someone is not capable of thinking clearly enough for themselves (children, and those with some mental “conditions” – hopefully that is a neutral term).
By analogy, the question whether something is “natural” or “supernatural” is similarly meaningless: the only thing that matters if whether we have sufficient evidence of sufficient quality to support a claim.
It doesn’t matter, ultimately, whether we view someone as disordered or normal: let’s just help people get what they need and want. I suppose, to that extent, there’s no need to label them as sick or disordered, but I think my point goes beyond what the euro-diversity movement intends.
Also, check out Elyn Saks’ Ted talk. She is a law professor (U of Chicago?) with schizophrenia. She references someone’s idea that, without one’s devils, one wouldn’t have one’s angels. She replies that her devils chased away all her angels long ago.
She would prefer an instant cure, but also asserts her rights to be viewed as a person as she is (she says she has schizophrenia, she is not a schizophrenic).
In the desire to see everyone as “normal”—as part of the rainbow of human diversity—this movement totally rejects the idea that some people are actually suffering and could benefit from treatment.
This seemingly innocuous sentence actually begs a huge question: to what extent is the suffering caused by their condition, or caused by society’s failure to accomodate their individual needs?
You can find a similar spectrum with (say) height. Where do you draw the line between those who would be helped by growth hormone therapy, and those who say “actually, if you just started making clothes and chairs in a wide range of sizes, there would be no problem. ” ?
I don’t know any neurodiversity advocates who would deny that some people are greatly helped by pharmaceutical intervention. I do however know a large number of neurodiverse people who find that in supportive surroundings, they can get on just fine without.
Fundamentally, the suffering arises as a joint consequence of the interaction between a person’s nature and their environment. It can be alleviated in part by modifying either. Is there not room in this world for both approaches? For us to be more tolerant and flexible over what we accept as “normal” while still allowing treatment for those who still have problems even when all reasonable accommodations are made?
Jerry Coyne doesn’t seem to get what the neurodiversity movement is trying to say. It’s not about wanting everyone to be given trophies regardless of how well they played the game. It’s about recognizing that not everyone likes the game, and some people don’t do as well at the game because they hate playing it and devote more effort into playing something else.
There are two components to neurodiversity:
1. Having unusual preferences and life goals. Examples of this include an autistic person’s collecting lots of information about a special interest, or the extreme moral uprightness of someone with scrupulosity.
2. Having brains that are better or worse than normal at achieving your life goals. Examples of this include an autistic person’s difficulty reading emotions, or a person with scrupulosity’s inability to focus on other topics if they believe they have committed a small moral error.
For #1, the neurodiversity movement is absolutely right. People want what they want, if you use medication to change that you are killing a fundamental part of who they are. And I’m not using the word “killing” hyperbolically, a person’s preferences and life goals are the core of who they are, radically changing them is practically the same as murder.
For #2 it is obviously good to cure impairments. Being able to achieve more of your goals in life is always a good thing. I would say that the pro-neurodiversity movement is misguided in opposing cures for #2, but I am not particularly convinced that very many of them do so. Most neurodiversity advocates I encounter are primarily concerned with #1, and only oppose curing #2 because they believe there is a big risk that cures for #2 will cure #1 as a side effect. But I will not deny that people who oppose cures for #2 exist, or that they are misguided.
But it definitely seems to me that people who want “cures” for mental disorders fail to distinguish between #1 and #2 all the time. For instance people frequently fail to distinguish between an autistic person who doesn’t have a lot of friends because they have trouble making them, or an autistic person who doesn’t have a lot of friends because they have better things to do with their life than be around people all the time.
And so in my view the real tragedy is when someone’s *talents* are taken away when they are required to do something that will help them live (say) safely. I hope some day we may no longer have to make that choice, but …
“But ask those who suffer, or who live with the sufferer, whether we should seek cures. Since conditions like autism, bipolar disorder, or schizophrenia must surely reflect neurological issues, they can in principle be cured or controlled.”
Is pale skin a disease? After all, we cure it with sunscreen.
Ummm… no, we don’t. Though I guess you could make a case that some people treat it with a tanning salon!