Should there be a cure available for autism?

Darkneos

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.

bert1

I was diagnosed about 7 years ago I think. The general consensus among autistic activists is that a cure is not appropriate because autism isn't a disease. I probably mostly agree with that, however, there are a lot of co-occurring conditions (epilepsy being the main one I guess) that there are significant downsides to. If there was a pill that got rid of some of the crappier co-occurring conditions without changing the autism, I'd be in favour of that. And there are also a significant minority of autistic adults who don't want to be autistic. It sucks, and these people are not comforted by the social-model line that there's nothing wrong with them it's the world that's fucked up. I sympathise with them, and for those people a cure would be great. Unfortunately there might be a lot of unintended consequences. Do we want a world without autistic people in it? I don't.

EDIT: have you managed to find other autistic people you can relate to?

Darkneos

↪bert1

I can't really relate to other autistic people. I'm in some weird middle ground where it's not terrible but not good either. And I HATE people saying nothing is wrong like they have lived my life. All it's done is hold me back and I've had to work so hard just to overcome the negatives of it. Maybe most don't see it is a disease, and I can agree that maybe disease is a strong word. But they are stupid to not think that some people are better off without it (again not outright killing or exterminating them).

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.

Jack Cummins

↪Darkneos

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.

bert1

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). — Darkneos

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.

Darkneos

↪Jack Cummins

I mean yeah there are a variety of factors that go into this as we don't understand what the actual cause of it is.

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.

Darkneos

↪bert1

But all minorities aren't created equal. Like I have actual handicaps that limit and impact my life. For others it's just a matter of society not liking their skin color or sexuality, IMO not actual problems just hang-ups bigots need to get over. I however have to deal with social handicaps all the time, rigid thinking and behavior, among other things.

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.

bert1

↪Darkneos

Sure, disability is a different kind of minority. But if autistics were in the majority, neurotypicals would be disabled. They may even be forcibly detained for making decisions based on feelings, for not saying what they mean, for being over reliant on social interactions for comfort, and generally being a menace to society. Much disability is indeed caused by an ill fit with the social environment, although not all. I don't think autistic people are intrinsically 'socially handicapped'. They appear so when the environment is taken for granted and therefore invisible. A fish on a pavement is disabled. In the water it's fine.

Jack Cummins

↪Darkneos

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.

Darkneos

↪Jack Cummins

I think you're getting off the point.

Darkneos

↪bert1

I don't think that's accurate. Even if autistics were the majority they would still be disabled.

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.

bert1

↪Darkneos

So in terms of social policy, what approach should society take if a 'cure' is discovered? You and I might be on opposing sides of the debate by the sounds of it.

Jack Cummins

↪Darkneos

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.

bert1

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. — Jack Cummins

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.

Jack Cummins

↪bert1

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.

wonderer1

Darkneos,

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.

bert1

The origins of a more positive narrative around autism can be found in Jim Sinclair's seminal presentation to parents of autistic children called "Don't Mourn for Us". Here's the link, it has had a huge impact on many autistic people:

https://www.autreat.com/dont_mourn.html

Darkneos

↪bert1

Well like I said it should be optional for those who don’t want to be like that anymore. Like I said it’s different for everyone so it should be left up to the person.

The extremes aren’t an option though. Either eradicating all of them or pretending like it’s not a genuine issue for some depending on how their life is. Like the first is obvious no, autistic people aren’t 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 it’s ok.

Even if society did cater to me like that I would still change it because of other things it does.

bert1

Like I said it’s different for everyone so it should be left up to the person. — Darkneos

What about children?

Darkneos

↪wonderer1

I did have that therapist but even then he tried to treat me like other autistic people he knew when I wasn’t. Like I said everyone is different.

The different person argument is invalid. No one is the same person throughout their life, everything changes.

Darkneos

↪bert1

That’s where I foresee issues since children can’t really consent to it. I don’t have an answer for that

Darkneos

The origins of a more positive narrative around autism can be found in Jim Sinclair's seminal presentation to parents of autistic children called "Don't Mourn for Us". Here's the link, it has had a huge impact on many autistic people:

https://www.autreat.com/dont_mourn.html — bert1

This is the naïveté I was talking about that I don’t like from the pro side.

bert1

This is the naïveté I was talking about that I don’t like from the pro side. — Darkneos

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.

Darkneos

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? — bert1

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

bert1

They treat everyone's case as the same when it's not, — Darkneos

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.

I'm sick of being told to change my attitude as if they know what I've had to deal with. — Darkneos

What have you had to deal 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. — 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?

bert1

IMO it's not a positive message — Darkneos

Not to you, clearly. But many people have found it extremely helpful.

bert1

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. — Darkneos

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.

Darkneos

Not to you, clearly. But many people have found it extremely helpful. — bert1

you can't really be sure about that.

Darkneos

↪bert1

I'm not? I'm highlighting the absurdity of his point. Calling someone who changes from what they are as dead is the most nonsensical thing I've heard. It sounds like someone who is afraid of things changing, though if he's on the spectrum that makes sense.

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? — bert1

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.

wonderer1

The different person argument is invalid. No one is the same person throughout their life, everything changes.

↪Darkneos

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:

Phineas P. Gage (1823–1860) was an American railroad construction foreman remembered for his improbable[B1]: 19 survival of an accident in which a large iron rod was driven completely through his head, destroying much of his brain's left frontal lobe, and for that injury's reported effects on his personality and behavior over the remaining 12 years of his life‍—‌effects sufficiently profound that friends saw him (for a time at least) as "no longer 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 it’s 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.

Should there be a cure available for autism?

Welcome to The Philosophy Forum!

Categories

More Discussions