Sunday, June 10, 2012

I don't want to be cured (and that's not because of privilege)

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.

Thursday, June 7, 2012

Sensory issues, or some of what it takes to walk down a city street

Walking down the street, you likely notice that cars are going by, the smells of the restaurants, the smell of cigarette smoke from the people smoking on the side walk. You likely see lights at things like crosswalks and on the cars. You likely are somewhat aware of what you're walking on. But its generally simple. There are things you like and things you don't like, and you will go towards things you prefer and away from things you prefer to avoid. When you can't avoid it, you'll likely be unhappy, but it won't be a big deal, you can get away soon enough. Things tend to be noticeable, but don't rule your life.

At least, this is what people tell me. Their descriptions vary, but generally it comes down to, there is a norm for sensory input, that involves all senses functioning, senses regulated, and the sensory input not needing to be the focus of something as simple as walking down the street.

I say "this is what people tell me", because this isn't what life is to me. This isn't what walking down the street is to me. I actually can't even imagine it. I can't imagine that little input noticed; I can't imagine things affecting me that little; I can't imagine it being that simple.

People notice the cars, the sirens when they go by, the noise of everyday city life. However, I don't just notice these. They completely overwhelm me. An ambulance going by will, at times, literally freeze me in my tracks. A car revving or a loud motorcycle will do the same. In order to keep walking, in order to not just get so overwhelmed I can't function, I'll dig my fingernails into my palms. I'll fidget with things, clench my hands, start signing things I want to say to people when I get to where I'm going. I'll wear earplugs (though not always, because they itch in my ears). When breaks screech its an attack on my ears. It physically hurts. My muscles tense up, headaches are worse, it just hurts. When I get to where I'm going I'm still on edge from the constant bombardment that is city life, and that's just the sounds.

The smells, those are so much worse. People who know me at all know this one at least. Those smells that are offensive to others are migraine triggers to me. Those smells that others dislike, I'm fighting to keep from vomiting from. Those smells that others don't even notice, they do the same. Walking down the street, you smell cigarette smoke as you pass someone smoking, but apparently most people don't smell it when they're half a block downwind from anyone smoking. I struggle to have people realize that my reactions aren't just psychosomatic, as they don't realize anyone can smell things the way I do. And the smells, they're too much too. The headaches, the nausea, the attempting to breath properly, that's normal. That's everyday. Being looked at strangely for wearing a mask when I'm walking down Main Street, or waiting for a bus; having parents pull their children away from me; having people randomly take pictures of me because they're not used to someone wearing a cloak and face mask walking around downtown - those vary in frequency, but only the random photograph is something that was so infrequent as to phase me. And that mask that people treat me differently when I'm wearing, its amazing. It lets me walk all the way to city hall without starting to get a migraine (though not all the way to the library across the park). It's amazing to have a full 15 minutes of walking down Main Street without beginning to develop a migraine. That's three times as long as I normally would get without the mask, and that's huge. People realize that dumpsters smell bad, and that sometimes people smell bad, and that tends to be something they understand can trigger the nausea, but walking quickly or on the other side of the street is (apparently) usually enough. The strange looks, the constant fighting of headaches, the planning my schedules around the smells, actively avoiding some buses and never going on those routes, planning when I walk and when I bus based off of how many people are riding vs walking vs taking smoke breaks, that's my life.

And those lights, those lights people see, those can be blinding. Those can make me unable to process what's around me until I've regained the ability to process. Those can make me, and often do make me, disassociate. All of the light, the sun, the headlights, the streetlights, everything, can make it so I can't even process the "walk" sign, especially when I'm being overloaded in other senses. Luckily I can function from 'don't walk when its orange' or 'walk when the sounds meant for blind people are chirping', but it still comes down to not being able to visually process certain details at times. When I say that I don't think it'll ever be safe for me to drive, people tend to underestimate what I'm saying. Walking down the street at night, if I was not terrified of cars, would likely be unsafe. People's descriptions of being blinded by the high beams on a car confuse me a lot. I don't understand what they mean by those being high beams, the lightest low beams are like that. What do they mean that the low beams give them light and the high beams are blinding? And that's before the disassociation. If its night time, I can rarely even walk home from the grocery store a quarter mile away without disassociating. It's like I split into multiple parts, and can't do more than execute the program of "walk home avoiding cars". I'm glad that other people on the sidewalk notice people, because I've almost walked into people often in this state (and only notice it after the fact). I already need to plan when I'm going to the grocery store around the smells, and now that we're adding lights in, walking home once its dark gets overwhelming. And yet, that's the easy option. For me its easier to deal with regular disassociation, to find ways to work around the fact that the lights are so bright that it hurts, that I can't see properly, and that I can't even be all together, than it is to deal with everything else if I avoided that. It'd be even easier to avoid the grocery store, but I need to eat somehow.

Now add on to all those sounds and smells and sights that you notice, noticing all those details (except, ironically, those that people expect you to notice on people.) That's not just a hand telling you to not walk, that's a lot of little lights, and they're not all working, some are out. The post is rusting and the trees behind it aren't just trees, they're full of leaves, which aren't all the same colors even within a leaf. And those disgusting smells, they're not just one smell, there are all these parts of various types of trash and various types of decomposition. And every little bump on the sidewalk is there, the new trash that you feel terrible walking by after people have thrown out of their vehicles, the dead animals at the side of the road. It's all there. You see it all, you hear it all, you smell it all. You don't see only a road scene, you see everything in that, and process it all.

And that's just being on the street. Not even walking yet. Because once you get to walking there's movement of your body. And because that body doesn't process everything normally, there's stumbling and being generally clumsy. I've mentioned before sensory issues to some degree, and mentioned this then. But that's not always acceptable. Sometimes people are expected to wear things other than shoes with toes (for some strange reason), and because trying to get a job is more important than a sprained ankle, shoes for interviews go ahead and cause walking down the street to cause sudden twisting of an ankle because of not being able to feel what's going on underfoot. I'm still dealing with my ankle being in pain after last Friday, and I've not even gotten to interview with anyone, just had to wear the silly shoes to prove to people I could dress professionally.

The sights, the smells, the sounds of the street. Walking and having to deal with processing information and not hurting yourself. If you ignore the weather, and assume everything on you is comfortable, despite even "comfortable" clothing being too much at times, then for the 5 senses people normally think of you can get from point A to point B (as taste is not very relevant for walking down a street).

But that's only the start of this. That's only the start of having unusual sensory processing in the ways that I do. Because that suggests once you're off the street that things are easier. That suggests that the vestibular and propioceptive senses don't exist. That suggests that only hypersensitivities exist, not hyposensitivities, not seeking this input to regulate oneself, not difficulty planning motor actions, or difficulty discriminating between different sensory inputs. That suggests that input can be dealt with and ignores it being overwhelming, breaking all ability to function, even after its gone. That suggests that removing input is all that's needed and ignores that even once the input is removed the recovery still takes time, and during all of that time there's extreme sensitivity to everything else, including non-sensory. Not to mention, while it certainly does a lot and certainly more is removable than people immediately think of, there's only so much input you can remove and still be able to get to a doctor when you need to and when you can't drive.

And this is my life. This constant overload. This constant bombardment of sensory inputs attacking me from all sides. My body not knowing how to habituate to anything going on, so hearing every tick that clock makes that others tune out. My body hyper-tasting and yet still craving strong foods (but only some, only my choice). My body having poor sense of where its joints are, and not being able to walk straight without vision. My mouth still at times having a hard time pronouncing words that I should know how to do, and my hands having such a horrible time at video games that people make drinking games over watching people like me play them. My body dealing with everything until it can't take any more, and it shuts down, doesn't let me speak, doesn't let me move, doesn't let me even get away from known migraine triggers at times. Or instead, losing control of my mind and snapping at people and sobbing, because the fire alarm has been beeping for a new battery longer than I can take.

Not only is this my life, this has always been my life, I didn't know some of this was abnormal until this past year, and this will likely always be my life, because while therapy helps and new coping mechanisms help, how I perceive the world is just different than normal people see it.

Simply dealing with what's around you, even ignoring the people, is so much, that I can't understand how people are surprised when a child throws themself to the ground screaming, unable to cope. Simply dealing with everything is so much, that I can't expect how people overlook it all. Simply dealing with everything is so much that I have no clue what its like for it to be simple.

They say it is. But its not for me.