The argument about whether autism should be cured is one that really frustrates me. People on both sides tend to talk in absolutes, about how its entirely wrong for anyone to want to be cured, or about how nobody would want to be cured. Both sides are silly and extreme. It entirely seems to be something where some people will want to be cured, and others won't, where if a cure existed and people could choose to have autism removed, without pressure from others to require it, it would be reasonable. Like the people against a cure, I'm scared of the possibilities associated with one - I'm scared that a cure would be forced on people, or that people would be even more discriminated against for choosing to not suddenly have a large part of them changed. I'm scared that people who are already treated as being incompetent wouldn't be given the chance to say what they want. I'm scared that someone who's nonverbal wouldn't be given a choice.
Really, that's what it comes down to for me, is that people should be able to choose for themselves; not people choosing to make life easier for others, not people choosing to make everyone the same - people should be able to choose what they want for themselves.
Which sets the scene for where this post came from. People were once again arguing online about whether a cure should exist or not. Generally I stay out of these discussions, but this one was getting more unreasonable, effectively claiming that its wrong to ask for people to treat a nonverbal little boy as a human instead of an empty husk, and saying that anyone who's really impaired would want to be cured.
The truth is, that there are people at all "functioning levels" (though I dislike the phrase) who don't want to be cured and who do want to be cured. There are people who can "pass" without much effort on their part who would be some of the first to jump on a cure, and there are nonverbal people who don't want a cure and who will write about this. Knowing this, I had to explain. I have issues with not responding to people online when they seem actually misinformed, especially because of wanting to make sure that others don't become misinformed. This was a situation where it didn't seem like others would, but I still had to respond.
So I responded, and then thought it'd be relevant to write about here.
There are a few different reasons why people don't want to be cured. Most, if not everything, I've read describes multiple of four main reasons why people don't want to be cured
- They don't want to have to relearn how to live life without autism.
- Autism is part of them, and has shaped their entire life up until this point. Removing that means they'd have to near completely have to relearn how to live as a neurotypical person. The amount that would need to be relearned is often entirely forgotten or at least underestimated.
- They have a strong sense of self identity
- Their self identity in this case includes their autism, and they don't want to change themselves, but instead work around their issues. They want to get better at coping with the challenges, but they explicitly want to do that without removing them, because autism is part of themselves.
- They want to succeed specifically as a disabled person
- They want to succeed, even in a minor way, and share their abilities, as a potentially severely disabled person. There are people who are nonverbal who want to share their stories and have people learn about their abilities, about what they can do, about what they can do for others, without speaking. Doing this while nonverbal is about more than themselves, is about more than autism, and is about more than disability as a whole; its about people and how we judge each other and how we treat people based off of that judgement. Having those disabilities can make it easier to show people weaknesses they have and strengths others have. Some people value sharing that more than removing the struggles of their life.
- They are happy as they are.
- This seems like something that doesn't need to be stated, yet it seems to need to be stated. People can in fact be disabled and happy.
Of course this won't include everyone on autistic spectrum, but it is a solid subset of the autistic community, even once you've limited the community to those which would be legally disabled. Not everyone wants to be cured.
So to those who argue that because they want a cure everyone who is "really disabled" does, there is nothing wrong with you for personally wanting to be cured. There is something wrong with you saying that others always have the same preferences that you do. It can be hard to learn that others have different preferences than you do. It took me until my teens to really understand this - that it wasn't that other people were pretending to not like things that I liked and pretending to like things I didn't (beyond things like food), but eventually I learned. These people, those who don't want to be cured, including some of us with Asperger's, some with speech delays, some without the ability to speak, do not have the same preferences as you do. They do not think in the same manner that you do. They are still disabled; they are still struggling with things far beyond many people's comprehension; despite this, they would choose to remain disabled when given the choice.
I personally am among that group. I have impairments with verbal communication (I remember being taught in speech therapy how to use tone of voice to ask a question along with the other speech therapy that I remember all through elementary and middle school (as well as 10th grade); I will go nonverbal for hours at a time if triggered; I don't know how to discuss emotions or how to answer questions about how I feel; I can't always communicate what I'm trying to say.) I have impairments with non-verbal communication (and often feel like I have "positive" and "negative" for what I can read on people's faces). I am socially inept, and am still finding out more and more how bad I actually am at this. My hand-eye coordination is bad enough that people have literally made a drinking game out of betting how terrible me and one other person will do at video games (they're the ones who would theoretically be drinking, we're just that bad to start, its hilarious) and have had people at times think I am actually faking. I have severe sensory issues, beyond what most people realize occurs. I cannot drive and never will be able to. I cannot take care of my one bedroom apartment on my own (and am really lucky that my boyfriend is entirely comfortable doing the parts I can't, because cleaning a bathroom isn't an option for me). I am applying for SSI for disability because every professional who's attempted to help me find a job has told me that either I should apply or that they just have no clue how to help me. I am without question disabled.
Yet, don't want to be cured. If I was given the option of removing my sensory issues, I'd almost certainly deny it (though I would ask for my migraines to be removed). If I was given the option of removing all of my ASD the question would be even simplier, there is no way that I'd make the decision to not be autistic. My reasoning personally falls into all four of the above areas.
My Asperger's doesn't make me unhappy. Certainly it makes me have to deal with things that will make me unhappy that other's don't have to, but it doesn't make me unhappy. I can't say I'm always happy. I'm human, I deal with problems that I don't want to mention on things like this forum that will make me unhappy, but overall, I know that my life isn't bad, and I know that I can get through the periods of time that I'm unhappy and get back to my default optimistic, happy, autistic self.
How I go about my daily life is absolutely dependent on my ASD, both in things I avoid, and in things I do. It would be far more difficult than people realize to have to relearn how to do things as complete as how to do dishes and those activities people take for granted.
I have an incredibly strong sense of self identity. I am Tuttle. My asperger's is part of me. I am autistic. I am me.
And something that I've only recently learned - my ASD has given me abilities because of the impairments. I don't mean despite the impairments. I don't mean that I got random gifts with it , I mean the impairments themselves are along with impairments, abilities that others don't have. The fact that I can't walk to the grocery store (a quarter mile away), and back without disassociating if its night time is not a good thing. It's not a gift. And yet, having to deal with that, knowing I deal with that, and sharing that I deal with that, has given me the ability to affect other's lives in positive ways that someone without that would be unable to do. People who disassociate for entirely other reasons have been able to learn from me. Professionals are able to tell parents things that their children are dealing with, such that the parents can change their actions to ones that aren't problematic for their child. People can learn. People can change. People can have happier lives, whether or not they are autistic, because of my impairments. How could I, personally, say that I'd take my life being easier, not necessarily any better, but easier, in exchange for not being able to continue learning, and continue sharing, and continue helping others because of these challenges? How could I say that I'd take my life being easier in exchange for other people's lives being less pleasant? It's not something I could do.
Not everyone is called to that. Not everyone has that manifestation of autism. Not everyone is called to put others before themselves to the point where it is actually likely a weakness. Not everyone has the interest in determining what they about themselves, and using that to share information with others that they didn't necessarily have. But some of us are. And the fact that we are impaired, the fact that we are disabled, the fact that some of the people I've read blogs of are nonverbal, does not change that part of us, the part that would choose a hardship for ourselves for the ability to make a difference in improving others lives.
When you really think about it, any cure would be a question of trade-offs. A majority would sacrifice some abilities that are associated with autism for those associated with being neurotypical. (There are known things that autistic individuals do better - for example processing visual data, autistic people still notice things out of place that they're not explicitly told to look for when there is more data that they're purposefully looking at while neurotypical people will not.) All except making people actually process information the same and just have better coping capabilities would lead to people needing to relearn self care skills. All would require choices of changing oneself.
It's a trade-off. It's a reasonable question for individuals to have their own answers to. In my case, I don't want to be cured, and that's not because of me not having reason that would lead others to make a different decision, its because I'm me and this is my decision.