Should there be a cure available for autism?
I know this is a controversial issue that comes up but I figured this would be a more measured place to post this since elsewhere it's more negatively received.
Let me start by saying I am on the spectrum and my whole life I've had to struggle with this. Always being on the outside when it came to social interactions, never being able to read into things like others do, rigid thinking, etc, etc. It makes me wish there was something for it but whenever I bring it up I get crap about loving yourself, or it's who I am, or "it worked out for me so it can for you". I hate that last one because anecdotes aren't data. Just because it's good for you doesn't mean it's good for someone else. It is different depending on the person. In my case I'm not getting the "good" parts of it.
My thoughts were to liken it to that second X-men movie (been a while since I've seen it) where there was a cure available for the mutant gene, but in my world it would be optional. Yet in the movie you saw mutants lining up to get it because a lot of them had traits that negatively affected their own lives. Rogue for example can't even touch someone without almost killing them. Side note: I always thought it weird that X-men was a corollary for marginalized groups and diversity, because in X-Men these people had actual threatening abilities at their disposal rather than just being a different skin color. It's that that made it ring hollow. But I digress.
My point is should there be an option to cure it for people who have had it be nothing but trouble for them? I know there would be issues for more severe instances where agency might come into play and whether a guardian could make the choice or not. But I wanted thoughts.
Let me start by saying I am on the spectrum and my whole life I've had to struggle with this. Always being on the outside when it came to social interactions, never being able to read into things like others do, rigid thinking, etc, etc. It makes me wish there was something for it but whenever I bring it up I get crap about loving yourself, or it's who I am, or "it worked out for me so it can for you". I hate that last one because anecdotes aren't data. Just because it's good for you doesn't mean it's good for someone else. It is different depending on the person. In my case I'm not getting the "good" parts of it.
My thoughts were to liken it to that second X-men movie (been a while since I've seen it) where there was a cure available for the mutant gene, but in my world it would be optional. Yet in the movie you saw mutants lining up to get it because a lot of them had traits that negatively affected their own lives. Rogue for example can't even touch someone without almost killing them. Side note: I always thought it weird that X-men was a corollary for marginalized groups and diversity, because in X-Men these people had actual threatening abilities at their disposal rather than just being a different skin color. It's that that made it ring hollow. But I digress.
My point is should there be an option to cure it for people who have had it be nothing but trouble for them? I know there would be issues for more severe instances where agency might come into play and whether a guardian could make the choice or not. But I wanted thoughts.
Comments (61)
EDIT: have you managed to find other autistic people you can relate to?
I draw to the X-Men, it doesn't matter how positive you think you're being for some mutants (like Rogue) who they are is a detriment to their lives and others. I think she got the cure in that movie, and I am with her. I can't imagine not being able to touch another person for fear of possibly killing them.
I also never got how people say it's the world that's fucked up and not me, I mean logically it would be the other way around because the world is just what it is. It's not like it's actively malicious or plotting your doom (no matter how we feel some days).
There is little else I want more than to not be like this but since there is no cure I have to work hard to mitigate its impact on my life.
I partly query the concept of 'cure' alongside the post above. However, at the same time understand that people who are seen to being on the autistic spectrum experience 'problems' which need to be addressed, possibly from many different angles.
I have worked with people on the autistic spectrum in mental health settings and have seen various approaches, sometimes being used in a combined way. Some aspects may be from the biological model and some from more psychosocial interventions. Of course, there are varying degrees of autism and most of the people who I worked with were having specific problems, including psychosis or difficulties which made it difficult to function on a day to day basis. These people needed psychiatric medication for these issues. However, some of them partook in therapies, including CBT and art therapy, as well as psychology input for social skills.
Part of the issue in thinking about a 'cure' or effective form of intervention involves the consideration of what causes autism. There are some biological theories and some which are more psychosocial and it may be a mixture of factors. As everyone who is autistic is unique there may need to be individually tailored approaches. Some people with less severe autism may have gone unnoticed in the past but there has been a gradual awareness of the spectrum as a whole which means that there is growing research, but the issue may be about accessing the best possible support.
The world isn't just what it is in the sense that it isn't a product of human beings and can't be changed. Any more than billionaires having all the money is 'just the way it is', as if nothing can be done.
Minorities generally have to somehow deal with the fact that they live in a context that is not set up with them in mind. There are a number of ways to cope with this. Not coping is also an option.
But assuming we did though is what I generally mean as we can argue about cause all day but that's not the main point here. The point is how it impacts people and whether or not those who argue it doesn't need a cure are doing it for all who deal with autism or to just tell themselves that so they can cope.
Because part of me wonders when it comes to those who argue against a cure is that they don't have my best interest at heart, or others like me for whom it's just a thorn in the side.
I mean black people, asian people, LGBT people, they don't have to worry about stuff like that. In fact most take it for granted.
I am not sure to what extent, or what people, argue that it doesn't need a 'cure'. To some extent, the approach in the post above my own may be more about the medical or psychological model having limitations. There are some who probably don't take autism seriously, except in the most severe cases that is probably a bad attitude, like the way in which many psychological issues are pushed aside.
The experience individuals have individually probably vary according to the social context in which a person is living because, as with many issues, there are varying degrees of knowledge. That may include the general population and even amongst medical professionals. Even though there is a growing awareness there are plenty of people who are not familiar with the autistic spectrum and it may be partly about whether one is fortunate enough to know people who have much knowledge or familiarity with autistic people.
Also much disability isn't caused with an ill fit with the social environment. Als if you don't think they are intrinsically socially handicapped I don't think you understand it very well. The comparison with a fish isn't apt either as it's more akin to a fish in the water with one fin or something like that. You keep blaming the environment when it's clearly evident there are handicaps. That's the other thing I didn't like when I brought it up, people kept blaming the world for not bending to them when I don't blame the world. I know what it is for me and it's not society's fault.
Sorry if you think I am getting off the point. One thing which I wonder about is the understanding of autism from a philosophy point of view. When I was reading literature on autism one particular aspect which I came across was how 'theory of mind' plays an important role, with autism often involving a lack of understanding of other minds. This is seen to be an important area in working with autism. As this is a philosophy site, I am wondering whether that is useful for discussion. It is also because I am aware from previous interaction with you that you have an interest in soliptism as a philosophy. I don't know to what extent that is something which you wish to think about in relation to the issue of autism.
This is just the principle, applicable to anyone, that it is hard to understand people who are different from ourselves. It's not peculiar to autistic people.
I agree that theory of mind is an issue for everyone. The reason why I found it an interesting area for thinking about in the literature on autism was because it was the underlying philosophy meeting point. Also, people have such varying social skills in both empathy and in reading other people's communication clearly. It may involve aspects of reasoning and social learning.
I'm on the spectrum as well, but admittedly I'm one of the lucky ones, in that I have some strengths to go with my weaknesses. I well recognize that many others on the spectrum have a lot more challenges than I do. So I hope anything I say on the topic doesn't come across as patronizing. (But I won't be too surprised if it does.)
I don't really forsee any hope for a cure. At best I think better treatments applied early enough in childhood to make a significant difference might be something to hope for. It doesn't make any sense to me though to say, "There should be a cure for adults." when I don't think that is really a possibility.
The way I think of it is that if there was some means of restructuring my brain so that it was no longer an autistic brain, applying such a technique to me would at best result in there being a different person in place of me. Not to say that there isn't anyone who wouldn't consider that an improvement, but I don't see someone else existing in place of me as desireable.
The only thing I can say that seems like it might be helpful to you, is that having a good therapist with significant experience working with autistic people has made a real difference for me.
Hang in there.
https://www.autreat.com/dont_mourn.html
The extremes arent an option though. Either eradicating all of them or pretending like its not a genuine issue for some depending on how their life is. Like the first is obvious no, autistic people arent something to eradicate. But the second is naive and stupid to think that just because some are good with it means those who struggle genuinely (like myself) just need to love themselves or blame the world and its ok.
Even if society did cater to me like that I would still change it because of other things it does.
What about children?
The different person argument is invalid. No one is the same person throughout their life, everything changes.
This is the naïveté I was talking about that I dont like from the pro side.
Can you explain what you perceive as naivite among autistic people who feel OK about being autistic? Is it that they tell you you can feel fine about it as well if you just change your attitude or something patronising like that?
EDIT: It would be naive of me if I thought I could extrapolate my own experience to all other autistic people, such that what works for me works for everyone. But exposing other autistic people to information, narratives, culture and so on often does help. Simply doing that isn't naive. Expecting it to always be helpful and strike everyone's bell certainly would be.
I meant that the message is naive in that it maintains the same narrow mindedness that people trying to help do. They treat everyone's case as the same when it's not, so yes it's patronizing, insulting and invalidating. I'm sick of being told to change my attitude as if they know what I've had to deal with.
The "you would be a different person" argument isn't valid. We change over time, no one is the same person they were when they were a teen or a kid etc, so his argument in there about wishing their kid was dead by not having autism could literally apply to ANYONE who changes something about themselves in a manner that isn't recognized.
IMO it's not a positive message, it's hyperbolic in parts and extremely naive, then again it's from 1993
He's speaking to a group of parents, not an autistic individual. It's critically important, sans a 'cure', for parents to not think their kids are crap versions of neurotypicals, rather than perfectly good specimens of autistic people. Even if that's false (which it isn't), it will result in better outcomes for the kid.
Quoting Darkneos
What have you had to deal with? This?
Quoting Darkneos
Well, that is the same for all autistic people! What you've said so far seems to be entirely autistic-normal, it's pretty much the defining characteristics. The difference, as you say, seems to be that you don't find any positives about being autistic, whereas many other autistic people do. So is that what you mean when you say "What you've had to deal with"? Is it not feeling anything positive about your autism?
Not to you, clearly. But many people have found it extremely helpful.
Yes, and it's bad when it does. Children grow up in ways their parents don't like, and parents disown them. My mum thought I was fab until I grew up and got a job as a labourer. Then she thought I was a useless failure. She had expectations of me that did not align with my own. I'm not clear what your point is. You seem to be agreeing with Sinclair.
you can't really be sure about that.
People have those in different ways and capacities so no it's not all the same for all autistic people. Some are able to turn their singular interests into careers and stuff like that, others are locked in by them.
Again you are presuming to speak for other autistic people which is where your argument is weak. It's not about feeling it's about what is. And what IS is that the traits can manifest as something good or detrimental, in my case it's detrimental. It's been nothing but a roadblock in my life.
What I think is that you and other people trying to convince others that there is something good to it sounds more like trying to convince yourself of something more than them. Like trying to deny that just because it's good or neutral for some that it applies to all when that is laughably ignorant. I and others would give anything to not be this way, but we learn to deal because there is nothing else. It's almost like trying to acknowledge that fact would make folks question themselves.
There is a matter of degree that is of relevance here. There are the typical day to day and year to year changes we experience in ourselves and see in others. Then there are much more extreme changes as in the case of Phineas Gage:
Autism resulting from the sort of differences in neural interconnections discussed here if 'cured' would result in a change in the person more akin to the change in Phineas Gage than to the normal year to year change in people.
I think it likely that Daniel Geshwind is correct in saying, "I prefer to call it the Autisms, because its not one thing, and no two autistic children or adults are exactly alike even though they may share basic features." So perhaps there are some autisms that are more 'curable' than others, but I haven't seen any good reason to think that is the case.
There's an extensive philosophical literature on disability. The social model of disability has a prime place, for both political and historical reasons, and is well worth researching. However there is also a body of criticism of that model, and recent work has moved to Nussbaum's articulation of a capacities approach, or the analysis of power and social interaction, after Hanna Arendt.
The interesting point here is how these models of disability can be put to work in the case of autism. An introductory analysis can be found at Patrick Dwyer's web site. see for example
What Is The Neurodiversity Paradigm?
The Social Model And Neurodiversity
The other articles thereabouts might be of interest.
Good topic.
It seems to still be avoiding actually acknowledging that some individuals have a net negative life experience because of it and as a result might be something to treat or cure rather than accept. '
Well, then, pass it by.
But it seems to me that what's missed is a structure within which to articulate the issue at hand. Looking for a cure is normative, it's based on the pretence that there is such a thing as 'normal", together with the misguided view that folk ought attempt to reach that standard. The Capacities approach changes the focus from social expectation to individual ability and desire. The language of Neurodiversity is in contrast about recognising and honouring the differences between minds.
At stake is the goal of whatever intervention one is considering. A "cure" looks for normalisation, whereas it may be preferable to maintain diversity while identifying and removing impediments to growth and happiness.
The argument is that a net negative life experience is caused by autism, and the conclusion is that curing the autism will result in a positive life experience. It's a rendering of the medical model of disability.
Even in the links you referenced they were forced to acknowledge that to say that some differences are not to be accepted (if anything your position is the absurd one, we can't embrace every different.
Regardless of how philosophy tries to spin it there is a "normal" for human beings and not everything is just a matter of difference but illness at times. In the case of autism is depends how it manifests in the person. For some they would benefit from being released of the negatives, others have the positives and minor negatives.
Quoting Banno
This is just ignorance. There are plenty on the spectrum who have similar experiences to me and feel as I do and know without these handicaps our lives would improve.
But as I said you're missing the details here, well the important ones.
I think that sounds fair enough. It can be aggravating to have people tell us that we can be the best we can if we just love ourselves and 'find strength' in our differences.
So it can be considered an illness based on how it manifests.
What are you calling good traits? Can you list a few? And the bad? Can you list a few of those? Just so I know what you mean.
There are autistic people who struggle a lot, and are extremely disabled, and yet would not choose to take the cure pill. There are, no doubt, autistic people who are not especially disabled, who nevertheless would take the cure pill, just to fit in better. I'm just making the point that there is no necessary connection between having a shitty time and wanting not to be autistic. I haven't done a survey, and it would be interesting and informative to do one (maybe someone has), but I'm pretty sure autistic people who don't want to be autistic are in a minority. But I could be wrong. I suspect you are doubly-marginalised unfortunately, being a minority of a minority.
Well, sort of. You could maybe develop a medication or surgery or something that turn people from being autistic to neurotypical, but such a thing could only correctly be called a 'cure' by people like you who conceive of autism as a disease. Neurodivergence is generally not conceived that way, so 'cure' would be the wrong word. Unless you want to say that you could 'cure' bipedalism by hacking someone's leg off.
I don't think there is an objective fact of the matter, but I think it would be rather cruel not to, particularly in a society where the cure was widely used.
I am not a fan of transferring defects in development to "unique variations which should be celebrated". Severely hearing impaired people have developed a culture around sign language and their auditory isolation. That's great; more power to them! If someone doesn't want to avail themselves of an effective treatment for deafness (like a cochlear implant) that's OK by me, too--as long as deafness isn't set up as a norm which should not be treated, which doesn't have very significant implications.
I like being gay. It's a behavior and a condition which appears quite regularly in nature. Is homosexuality therefore normal and natural? predictable yes, normal... maybe not. Normal or not, it's a perfectly acceptable defect or variation, however one looks at it.
I'm also not a fan of ironing out all the wrinkles in human variability. Doing so might well eliminate musical prodigies, business geniuses, brilliant and productive writers, the rare very gifted inventor, etc, as well as eliminate problematic variations such as mental retardation, schizophrenia, epilepsy, and so on.
Were there therapies to resolve any number of significant conditions, maybe they should not be applied without informed consent to the subject). Autism, homosexuality, deafness, blindness, etc. are not advantages, but they aren't diseases, either. Major caution should be exercised in treating these conditions. Could I have given informed consent at age 6? No. 18? Maybe. 30? Either yes, or never.
Except there is.
Quoting bert1
This is a bit of a strawman. Autism is very much an impediment to ones life, trying to liken it to bipedalism is woefully wrong.
Not to mention the neurodivergence is kinda divided on the matter. I mean you have blind people who view blindness being cured as offensive. I think those who dont view it as a disease are blind to the full scope of how it manifests. Like I said, Im not the only one who feels like I do.
You say that like its a bad thing. Also you could just not take it or give it. Im sure there would be folks who would do the same, but they dont get to speak for all and neither do you.
This doesnt seem like a bad thing. I think the world could use less geniuses, inventors, etc considering most of the issues today were caused by them. The world will also survive without writers or musical prodigies.
Though Im not really seeing your point with the rest of your statement.
Yes.
Why would we not cure something that is only trouble, as if we should respect and protect the existence of trouble?
Not really. You presented the question starkly enough that the response seemed unavoidable. If it's nothing but trouble, like a broken leg, then why wouldn't you cure the fracture? This isn't to condemn those with broken legs, but it's not to humor those with broken legs either by suggesting broken legs are as good as unbroken ones.
I'm also very open to the idea that autism offers some advantages, even if it's just a certain pride in uniqueness, but I defer entirely to those in the know on that as to whether it is worth it for the individual to protect.
This is to say, if you tell me you've got a problem, real or perceived, and there is a cure, why would I intervene on that decision? By the same token, if you have what I think to be a problem, but you don't think it that way, why should I intervene there either.
Take psychopathy. On the extreme end, you get arsonists, rapists, and bloody murderers who don't feel much. They are clearly a problem. Too bad we don't have effective treatment, let alone cure. On the mild end of psychopathy are highly effective slightly psychopathic executives who can make necessary decisions which affect other people's lives (like having to lay off 10,000 people on Christmas Eve to keep Waffle House International afloat) without losing their managerial effectiveness. Such people are not going to be popular, but if you sit at a desk where bucks stop, there are hard decisions you have to make to keep the company going, win the war, get the movie made, or for-essential-national-security-reasons keep the remaining Waffle Houses open.
But I see the question to the individual to be a subjective inquiry, in terms of what he prefers as opposed to what society prefers.
If I think my ethnic nose more an annoyance than a point of pride, and we have a cure for such things, it's my call to make, no apologies.
If through diligence and commitment to our cause we once and for all eradicate the unsightly noses of the world with perfect button noses (think Peter Cottentail), the world might suffer from lack of diversity, but I impose martyrdom on no one, and do not require anyone suffer for the greater good by being keeper of the nose.
But should you want to keep your elephantitic honker as is, let your freak flag wave proudly in the sneeze.
The response was treating trouble like some kind of human or solid entity, it had nothing to do with the question.
The rest isn't relevant to the question.
If we had the capability for you to change, I wouldn't be against allowing it. I have autism and I wouldn't change given the choice, but I have things I would change if I could. Autism can be a negative for some, and it isn't for others, but that applies to most characteristics. I think the backlash you get is partly due to your usage of terms like "cure" and how you express your disdain for autism rather than making it clear that you hate "your autism" for personal reasons. I wouldn't be able to listen to you talk about autism without becoming sick of it pretty quickly.
However, I do sympathise with how people will address what you could do, rather than acknowledging your difficulties. There is a prevalent mentality of toxic pragmatism, where unless your situation is accepted as completely unavoidable, all focus will be put on your failure to handle things better. Autism can make one's life much more difficult, and it's cruel to downplay that difficulty by emphasising possible solutions. The intention is to be helpful, but the effect is that it can make it seem like you're being blamed for your misfortune and that nobody is appreciating the hardships you've faced.
:up:
I'd suggest that it is something of a fundamental freedom that anyone who has a complaint about their condition, or is un-easy or dis-eased in their relation to themselves, has the right to seek a remedy.
Which does not entail that anyone else is obliged to provide them with satisfaction on that score, even if they have the means.
However, in matters neurological, it can be the case that a cure, while solving the immediate problem, leaves the patient with a sense of incompleteness. It is as if without what one feels as an impediment or a difficulty, one feels somehow incomplete. I seem to recollect [s]Andrew[/s] Oliver Sachs recounting such a case in relation to ticks.
So the right to seek a remedy, and the equal right to reject one, and beware of getting what you want.
I had a lot of problems before then but from my experience a lot of them were caused by other people.
Autistic people are at a high risk of bullying and one survey found that 90% of the ASD people polled were bullied in school and it was often constant bullying and that happened to me.
My family was also dysfunctional and I was bullied outside of school as a well. And work organisations rarely cater for people on the spectrum and there is very little effort to shape society to help autistic people in the same way there have been laws and provisions for disabled people and for racial and sex equality. (This is gradually changing)
So I don't know how it is possible to claim society is not the cause for a significant amount of autistic peoples distress. We also have one of the lowest life expectancies as a group and I myself became suicidal as a teen but it is not just caused by disease processes.
I think one benefit of managing illness, disability and difference is it can improve other peoples lives in ingenious ways with unforeseen consequences. I don't want to live in a monocultural society of well functioning drones. In alleviating distress and symptoms I believe we should try a multifaceted set of exhaustive approaches including medications which I am on myself, societal adjustments, therapies and anything else. Drama, literature. Meetings between neurotypicals and cognitively diverse groups.
From [url=https://www.frontiersin.org/articles/10.3389/fnins.2021.697870/full]this paper:
There is evidence, that at least some percentage of autism, corresponds to variation in cortical minicolumn structure, which are variations with a feature size too small for current fMRI technology to detect directly.
One treatment that I am curious about, which appears to be beneficial in some cases, is treatment with the hormone oxytocin. I haven't looked into trying it myself though. Perhaps next time I go to the doctor...