"Different not disabled"

One of the first phrases I heard when I was researching Asperger's (because I wasn't aware of using the word autism then), was "different not disabled". It was saying, you aren't disabled, you are only a different sort of human. It was also saying you aren't really impaired.

In many ways, what different not disabled was saying was "you're actually the same as the rest of them". In saying "you aren't really impaired", it was denying differences, suggesting if I struggle, it is only because others do too. It was saying, my struggles are all things others deal with, if they weren't, I would be disabled.

I didn't recognize my impairments then. I didn't recognize any autistic traits. I was happily claiming neurodiversity, but had no clue any way that I was neurodiverse, and didn't realize that I didn't know.

I was 13 and was thinking that everyone else had the same interests I did, even when I was being told these words associated with the autism spectrum. The reason that they grouped together in cliques, listened to the same music, went to the mall, was that they all pretended to have these other interests to fit in with each other. In truth, they all had my interests. The difference was that I didn't care about fitting in, and preferred being myself.

I was different, but at the same time we were all the same.

Every time I saw what was said around "different not disabled", it was "we're just a different sort, just like if you're gay". It was repeating to me there's no difference that should be talked about ever, and yet talking about it proclaiming neurodiversity. It was saying we didn't need any sorts of help ever, we just needed people to respect us.

My understanding of myself was held back so far hearing these words. I didn't recognize who I was. I kept being told "you're just like them", even when I wasn't. I kept being told I didn't need help, when I did. I was told I wasn't disabled, and I am.

I was told if you needed help, you couldn't have strengths, that if you had strengths, you couldn't need help. I was told that disability is to be ashamed of, and that someone who is neurodiverse is innately different than someone who might ever use an app to help them speak. I was told many things that aren't true and held me back.

This isn't just me. I've heard others say the same. That entering into the online autism world and finding those speaking about how we aren't disabled, had hurt their ability to understand themselves and the world.

Disability might be caused partially because of the society we live in, but that doesn't mean that people don't need help. It doesn't mean that people should deny the differences they do have, and try to push through trying to do everything on their own, never trying to even adapt. Disability isn't a word saying a person is lesser, that a person doesn't deserve life, doesn't deserve happiness. It's just our sort of difference - our one which does have dramatic downsides, a community, and people treating us poorly for being how we are whether or not we recognize who we are, and whether or not we are open.

Taking away the disability label only takes away self-awareness, possibility for adaptations, resources for growth, and community. It doesn't protect me, it only protects others who don't want to let me be disabled.

Choosing pain

Have people ever felt pain? Have they ever felt limited? Have people ever felt a struggle, like they want to do something, and they can't manage to, no matter how hard they try?

I can't understand. Everything I know suggests that everyone feels pain, that everyone struggles.

So why would I be told "You're only disabled because you want to be"?

Why would I be told, that I choose to have migraines? Because I have been told that. I've been told that if I just wanted to not have migraines, then I wouldn't, and that the only reason I have them is that I want to be disabled.

Why would the implications be "you want to have migraines"? As if the "services" for those of us who are disabled are worth spending so much of my time in pain. Spending nights unable to sleep with my head being split open, and my brain being compressed by a skull crushing in on itself. Spending days with my head spinning, unable to identify where I am, where my limbs are, how to move them enough to do tasks like pick up things, or open doors. Spending days unable to speak, my vision blurring, sound coming from all directions...

Why would someone suggest that it'd be my choice, to struggle to find ways to do what I can, because I can't find a place that I can be without my brain saying my body won't work. That my senses lie even more than they normally do, that my body won't listen, that everything, and nothing is too much, and that the confusion of existence is beyond my comprehension.

Have they had pain? Would they choose it? Would they choose a struggle? Would they choose to fight against feeling like they can't do anything?

Because that's what I do. And it's not because I choose to have migraines. It's because I choose to limit how much they limit me. I choose to say, I know I'm disabled, and I'm going to go out there, and do everything I can, even when that's fighting against my body. Even when that's struggling to find ways to exist.

Every day I go in public, I do it knowing I'm probably going to get a migraine. And yet, I can't stay hidden in my room. (and truthfully, even here hidden in my room there's a high chance of migraining too).

I build up skills, tools, adaptations. I take meds, carry more. I carry too many tools, and train my brain. But I choose what is right for me.

AND IT IS NOT CHOOSING TO BE DISABLED

It's me choosing, that sometimes, its worth going through everything that a migraine entails, to go and spend time with friends. Sometimes, its worth the pain and suffering, the confusion, and all the aura entails, in order to have a chance to make a difference to others. Sometimes, its worth the migraine, to get out of a single small room, and face the world, getting to choose what I'm doing, how I'm doing it, until the fog rolls in, and my neurology overtakes my ability to choose what I want to do for something other than keeping myself out of situation of everything being too much.

Would they choose pain?

Because I'm the one who has that choice. And its not nearly what they think it is.

Success

I sit at a table, working playing a game with students. Next to me a conversation goes on, which I desperately want to join into, and can't, because I'm working with their classmates. Instead, I busy myself listening, enjoying what I hear. Twelve and thirteen year olds discussing neurodiversity and what it means to be autistic. Preteens and teens discussing their own way of being - my way of being - and the idea of acceptance.

Another time, I sit at the same table, and a student fights within himself - overwhelmed by the noises of the classroom, but afraid of acknowledging his impairments. I'm there with him, sharing his disorder, but already accepting my own, and someone who he views as someone worth looking up to. I am open about my ear muffs in my backpack, and about how much more noise it would take for me to go through the effort of pulling them out even buried so deep. That day self-care and self-acceptance wins, because of acceptance of me, and he gets his own ear muffs to protect himself from the sensory onslaught he was feeling.

Teachers requesting where I got my neurodiversity t-shirt, aides asking about the problems of stim suppression, people turning to me as someone knowledgeable about autism and asking me questions. Most importantly, students treating me as a mentor rather than any other sort of adult.

Success - that is what I get. I make a difference in people's lives, because of my autism, and because I know who I am. I am not afraid, I know I'm impaired, I accept the word "disability", and what I get for it, is my success.

Everyone's success is their own. No two people do the same thing, no two people share the same traits, disabled or not, autistic or not. No two people share the exact same goals. What I manage though, is managing to show people that they are worthy, by showing them myself. I manage to show them how to accept themselves, by showing them that it isn't a scary place of lesser being and inability, it is a place of acknowledgement of impairments, and a place of finding themselves and their own goals. I manage to show them the worth of everyone, slowly, by showing them that impairments don't define the worth of a person, even when they begin afraid of impairments doing so.

My success is helping people through that process, speeding it up, making it not one to be afraid of. My success is making other adults start to see bits and pieces, and what that might mean in education. My success is taking being myself and spreading the idea that you shouldn't be afraid of someone like me, and it working. My success is seeing steps, someone asking me for help for more ways to take care of themselves, someone talking more openly about who they are, someone turning and talking to others about how autism isn't a bad thing.

These aren't things I could do without being autistic. I use my autism productively, because it is who I am. I need to help and share. I need to make people see the beauty of math, see that I'm not a horrible person because I am autistic, need to make people see how much they are, no matter their impairments. I need to take my self-acceptance and project it onto others, until they accept me too, until they accept themselves too, until things become better.

Because in too many cases the children are sitting their not understanding who they are, because nobody tells them. The parents fear because nobody tells them. The people around haven't heard any words about autism besides "autism speaks". There isn't any ideas of what or who we are, except the idea of fear. I am not afraid of who I am, I see no reason to fear me, even if sometimes I need a little help.

So, I want to take this, and tell people. Take this and go to the children, and instead of the therapy, just play games working on math skills and while doing that talk to them as a peer and mentor. Letting them know who I am, being open about my diagnosis, being open about my impairments and about what I do because of them. Answering questions about how I cope, and about what my quirks are. Tricking them into learning skills that I think are necessary to learn, and I think will help them, focusing on problem solving skills, and critical thinking skills, and various types of reasoning.

And that's what I do, I share, I teach, I show people and they get to know too. They get to see too the beauty, they get to see too, who they really are - someone who isn't to be feared.

Internalized Ableism

"I'm not disabled" a student of mine says, complaining to a teacher about how her peers were saying she was. "I know" is the basic reply of the teacher, telling her about what she can do, yet ignoring the fact that yes, she is disabled. That most of the people I work with are. That me, the person who is most praised in the school for my math ability, is disabled.

She calms down, but the way it is done, is by removing this, and later on, with others, she talks about when she goes to college, she will refuse to show them her IEP, refuse to ask for or accept any accommodations. She only wants to be normal. She doesn't want to be seen as different, doesn't want to see herself as different. She repeats, again and again how she isn't different at all, is normal. She's normal. She insists.

She must have forgotten that the person she was speaking to was disabled. I am open about my disability. The students talk to me about my autism and my migraines. I tell the other adults things about myself to advocate for the students, because sometimes its the best way I have. But now, there was a student telling me, how that wasn't her. Telling someone who accepts this part of herself how it is being rejected.

Everyone else was helping her reject it. The kids were teasing her for being disabled. The adults, reassuring her how normal she was, and saying how she wasn't disabled. Both weren't letting her have it be part of her, and weren't letting her have what she needed.

So instead, I ended up sitting down with her, explaining why she should get accommodations. I explained how they wouldn't make her a bad person. I explained why they wouldn't be her taking advantage of the school. I explained how what they were was instead helping match her education to her. And to help her, I truthfully said that I think everyone should have individualized education, not only disabled people.

We started going through what some accommodations would be that would help her in higher education, rather than limiting it to her IEP, when she goes to college, what are things that are appropriate for her to think about asking for (such as exams in rooms with small groups instead of large lecture halls)? And at the same time, what are things she can do to better her own education on her own (such as recording audio of all lectures on her phone). And slowly, the accommodations became part of her, they weren't something being done to her, someone claiming she needed things she didn't want because she wasn't good enough, they were something that she was controlling, strengthening herself.

Rather than an IEP being something that was people saying "you can't do things the normal way" like she had been taking it as, no matter how the teachers were actually speaking to her, her internalized ableism wasn't as strong, she could view herself as being able to use accommodations. The word "disability" applied to her didn't have as much a strength when it came to how insulted she felt.

Internalized ableism can affect people a lot. I've seen large amounts of self-hatred because of people hating their disability. I've seen large amounts of people refusing to admit they are disabled, because they don't want a "bad" thing associated with them. People refuse accommodations, refuse to do things that might make them look odd, refuse to do things associated with their disorder because they want to see themselves as normal - even when it is at the cost of being more symptomatic.

Actually using tools when they help is powerful. Actually using the accommodations you can can be the difference between managing and not. These can be challenging to do, because we're so used to being told not to, to not being able to, to having to fight to look normal. Sometimes, the first fight, or even biggest one, is against is ourselves.

Questions

No matter how many questions are answered, there are more waiting, questioning. No matter how many questions are asked, there are more out there to be found.

No matter how far you search, reaching farther, journeying longer, is always a possibility.

And that is the journey of our lives.

Our lives of questions, answers, solutions, and challenges; ways to cope, and never being enough, but always questing for further solutions, further answers, further skills to aide. Our lives of asking ourselves what we are doing, and how we are doing it, finding new ways, and doing it.

My life is a life of questions. Everyone's is, but mine I see a list of questions with every action I take. How far can I push myself? What are the things I need with me now to protect myself from my neurology? Simply, what do I do?

My life is a life of answers. We all answer questions. We all quest and grow. We all challenge ourselves and come out ahead of where we were.

So my days, I have questions. They are the questions of my days, of what do I do, and how do I do them. They're the questions making me choose how I act. How do I get through a school when I don't know where I am? How do I teach when I can't see more than a square foot at a time? How do I walk when I don't know how to balance? How do I prepare when I don't know what symptoms will hit? How do I navigate when my body tells me I have choices like being able to step forward or having any sight, but not do both simultaneously? How do I keep hydrated when I end up so heavy that I don't remember how to stand? How do I keep safe, when my motor cortex might stop working?

And then. Then, I answer these questions. I find answers, I don't say I can't. I find ways to navigate a school on memory and touch. I plan what to carry, and organize it carefully. I teach my brain how to stop using vision, so I can use other senses more efficiently, and process with other senses when I need to, giving myself enough tactile input that I know where I am. I teach myself how to use sounds. I practice using other sorts of motion, other parts of the brain, for when I need it, so I'm not trapped in place.

I find answers. I find ways. Because I'm not going to be trapped. I'm going to adapt, I'm going to find a way to succeed. My body might not respond like yours does, but I can answer how I can can do it. They are my questions.

I challenge myself, and constantly, I'm asking more questions, and finding more answers. I'm finding more ways to cope, more ways to adapt, more ways to make myself work better in a world so toxic. And answers lead to more questions, more ways to seek out ways that I might adapt how I interact.

I question. I answer. I seek. I find. I learn. I grow. And more questions come.

Taking caring of me my own way

I cannot make the decisions you make. I'm glad you take care of yourself. I'm glad you stop and say that you need to. I need to take care of myself too.

I need to take care of myself my way. I need to take care of myself as the person who if I stopped when you did, I'd not do anything, and that wouldn't be something I could manage either. I need to take care of myself as someone who needs to stop for things you cannot imagine. I need to take care of myself as the person who needs to push myself to the limit every day, both because I need to for my own sake and because my body doesn't give me a choice.

I cannot do things the way you can. I cannot leave everything when I get a migraine. I am glad you do. I will recommend to everyone to do it that way. Do not look down on me for doing differently. Do not tell me that my stuff is less severe. Do not tell me that what I'm dealing with isn't really a migraine, or isn't really a challenge, or isn't really "bad". I need to do it this way. This is my way.

I am glad you have the choice of doing something different. I am glad you can leave when every migraine hits. I am glad you can take care of yourself and protect yourself. I do not have the luxury of both leaving and facing the world. I would rather face the world. I would rather push myself to my limit. I would rather roll around a building in a rolly chair unable to stand; I would rather type in an AAC app on my phone; I would rather use a long cane; I'd rather find weird ways of doing something that people don't think of than leave and not let myself manage what I am capable of. That is my way of dealing. It is my appropriate way.

I cannot do everything your way. I cannot take days off work every time I deal with the pain of a pinched nerve. I cannot use ibuprofen to deal. I apply peppermint and cope. It doesn't mean I'm not in pain because I am managing. It is my way. I am glad you choose your way. Your way is better for you. Because I can manage, does not mean you can or should. You should do what is appropriate for you. You also should not minimize what I deal with.

I cannot do things your way. I cannot buy a car and drive myself home from work no matter how many times I'm told I should. It would not be safe. I cannot simply organize all the things to get myself a meal amidst all the noises of a home. I need to take care of myself in my own ways, in all of what that means.

My communication is different; my sensing is different; my pain is different. My need to push through is different. My need to find alternative ways to find a way in a world. So I do it. This doesn't mean I think you need to. It doesn't mean I'm dealing with nothing either.

I'm glad you can step away when its too much. My "too much" has to be different, though. I need to find ways. I need to do things oddly, and I need to say, what's good for you isn't good for me, and what's good for me isn't good for you.

I need to take care of myself, and do things my way, whatever that might entail.

The relationship between chronic pain and abnormal sensory processing

People don't often understand chronic pain - they think they do, they've dealt with pain, but generalizing from an ache and pain here or a headache there to pain being a constant part of your life, that it partially shapes your life. This pain isn't just there, its constantly there, and its not only constantly there, its what determines what life you're living.

The thing about this pain - this pain that is constantly there - or at least one thing, is that you can't stop for it. One of the privileges of not having chronic pain is the ability to stop because of pain, and it being the proper thing to do. When you don't have chronic pain, its not only acceptable, it is appropriate and right to stop when you've pushed yourself so far that you're hurting. It is wrong to keep going when you've caused pain when you can set it aside and finish it tomorrow, unless its extreme circumstances.

When there's chronic pain, you don't have this luxury. You don't have the option of stopping because of pain. You don't have the option of saying it hurts today I'll do this tomorrow, because it hurts tomorrow too, and the day after that, and so on. There are questions of trying to manage pain, and trying to not overdo it, but pain is no longer an excuse, pain is no longer a reason to stop going today unless the pain will be unmanageable tomorrow, pain is no longer a reason you can say that you can't do something now.

When someone has a bad headache they can take painkillers and say they can't do the grocery shopping today. When someone with chronic pain has to do the grocery shopping, they need to do the shopping. They might rearrange what they are picking up so that they're walking the shortest path, or such that they're not carrying any heavy items, but they still need to eat. Pain is no longer a reason to put off the shopping.

So, when it comes to abnormal sensory processing, the same types of things hold. Except that most people don't ever even get the headaches in the first place. Most people don't even get the equivalents of twinges of pain. They don't need to say that things are too much, they don't need to say they can't cope with things, they don't need to find to ways to cope with things that are going on around them. They never feel pain, except they never get any of the downsides of not feeling pain.

And then there are some people who have to cope with headaches and aches and pains. There are people who if you push them to far, or if they push themselves too far will respond with pain. They will sometimes wake up in pain without a good reason, and will need to react with pain killer equivalents and saying that today they can't do the grocery shopping. We need to be accepting of this. We need to let these people do what they need. These people are the equivalents of people who get headaches in a world of people without pain receptors.

Except, there's a level above that as well. There are the people with chronic pain. There are the people who no longer can say no, I can't do that today. There are the people who have to just keep going even though it hurts, even though the world is at constant war with their body and their body is at constant war with itself. They no longer have the option to say its too much, because its always too much, or that its not enough, because its never enough, or that its not right, because its never right. They always have to fight to make it as best they can, and as best they can is always still pain, and always still more than most people deal with, or can ever imagine dealing with.

These things affect people, and the lack of understand can too. Treating people right matters a whole lot. Remember that people can't always say no. Remember that not saying no doesn't make it easy. Remember that these people who are saying that their bodies are processing things differently mean it - when they're saying that it hurts and they can't take it today that they mean it, and remember that those of us who no longer can say that and who have to just try to grin it and bear it and the chronic pain it causes have to do that too. Please.

Neurodiversity [and disability]

There was a post on wrongplanet asking about neurodiversity and disability. Are they mutually exclusive? How do they relate?

And really, looking at how people talk about it, it doesn't seem like people understand disability as part of neurodiversity.

So I responded. I responded the following:

Neurodiversity is about saying that disability doesn't mean lesser.

I am disabled. I am not a lesser person because of my disability. I cannot do everything that others can. I will never be able to. I will always have needs that others will not. I will always be disabled and not just different.

But that doesn't mean that I'm not good enough. It doesn't mean that I'm not human. It doesn't mean I'm less than someone who's not disabled. It doesn't mean that I need to be cured.

It means that I'm a disabled person.

And neurodiversity means embracing those differences. All of them. Disabled or not. It means saying that someone who needs to read to learn and someone who need to listen to learn both matter. It means someone who can't see a florescent light without getting a migraine matters. It means that someone who needs to use tools to remember what they're doing day to day matters. It means someone who doesn't know how to interact socially matters. It means that we're all people.

It means that disability isn't being broken. It means that disability isn't being wrong.

But its a concept larger than disability.

It means that being different isn't being wrong. Disabled or not.

That's what it means to me.

I'm disabled. I'm not less than someone who's not. I'm just me.

And people agreed. And people disagreed. People either said that high functioning autistic people weren't disabled, or they liked what I said.

But disability is what it comes down to. And its a scary word. And it doesn't have to be a scary word. An neurodiversity is saying its not a scary word.

I am not capable of the same things others are. I just cannot do things others can. This is not a question. This is just a statement. There are things I cannot do. There are major things I cannot do. The fact that its not a big deal doesn't matter. The fact that there's a lot I can do doesn't matter. The fact that I work around it doesn't matter. There are things I can't do.

That's what disability means - that there are things you are limited in doing or can't do. Not that you can't do anything. Not that you aren't good enough. None of that. I am disabled. I am disabled by the same stuff that calls me autistic. By the stuff that makes me deal with a sensory system most people can't imagine, and by the stuff that makes my nonverbal communication a mess.

But neurodiversity says I'm good despite that. Neurodiversity says I'm not wrong. Neurodiversity says embrace those differences because differences are good, even if it means I'm disabled. Disability isn't wrong . I might not be capable of everything. But I'm capable of enough.

I'm capable of being happy. I'm capable of enjoying life. I'm capable of making a difference. Sure, I need help. Sure I'm not capable of everything that's normal. That doesn't matter. I'm not a lesser human despite that. I don't need "fixed". I don't need pitied.

I need helped. I need accepted. I need treated like another person, and a person who's needs aren't the same as everyone else's. I need acknowledged. I need to be me not someone else.

So yes, I'm disabled. But accept me anyways. I'm not broken. I'm just disabled. And disability doesn't have to be scary.

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.

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.

Ableism

They say everyone has problems.

They say if I only try harder then I'll be fine. I'm just not trying hard enough.

They say its my fault. It's my fault when I'm hurting. It's my fault when I'm feeling guilty.

They say I'm faking for attention.

They say that because I can speak, I can't be autistic.

They say that because I can ask for help, I shouldn't get it.

They say that as a female adult, if I'm contacting about help to do with ASDs, it must only be because I'm a neurotypical mother of an autistic child. I can't be looking for help for myself.

They say that nobody likes headlights.

They say that I have no reason to care if others smoke.

They say that sirens bother everyone, and can't cause me actual pain.

They say that the flashing of florescent lights can't be visible.

They say that if something is labeled ultrasonic, you always can't hear it.

They say that if it doesn't bother them, it can't bother me.

They say that I can't be disabled, that I can't be autistic, that I'm only a little different.

They say that if I only tried I could drive, and that I'm just being defeatist.

They say I'm just lazy when I don't feel like I can go to the store.

They say that I'm too smart to not have a job. They say I shouldn't need help finding one. They say its my fault I'm not working. They say I don't have real problems that make it more difficult to find, keep, and complete the requirements for a job.

They say its all me.

I say that I'm trying.

I say that I'm doing the best I can.

I say that I am making progress, even if I sometimes can't see it.

I say please stop blaming me. It makes it all harder.

I say let me be myself.

Emotional Support Animals (aka Tuttle gets a cat :))

This post I've been meaning to write up for the past week and have been being distracted from it every time I go to start. The distraction is rather straight-forward - she's 11 pounds, just over a year old, and a brown tabby :).

Earlier this year, I heard about Emotional Support Animals, since that point jonored and I had been looking into the possibility of me getting an ESA. When I was younger I functioned far better in many ways because of the pets. When I went to college, me not having a pet had a huge affect on me. My inability to identify my own emotions suddenly because far more of an issue; not knowing when I'm slightly upset means that its far more likely to hit very upset. Stress has started affecting me far more. I've been having many more meltdowns and shutdowns. I have been getting even more needy with attention from jonored because of being lonely with others not having time for me (as they actually do things like work and I'm still unemployed and am unable to drive.)

So, I started researching ESAs. Animals often help the people they are around, even by just be there and acting the way they normally do. Emotional Support Animals are animals which reduce the impact of their person's disability by acting as a pet does, rather than requiring special training like a service dog does. Rather than going out in public like a service dog, they stay at home, and only have rights when it comes to housing, flying on airplanes, and possibly a few other very specific situations.

The main right than an ESA has is that they are allowed in pet-free housing (or if there is a fee to have a pet the fee must be waived). How this works is rather straightforward. A physician or licensed mental health worker must write a letter for the disabled person stating that the person is disabled and should have a cat, dog, or whatever sort of animal in order to help with their disability. This allows for the request of letting this person have their ESA with them be a request for accommodation. As long as its a reasonable accommodation, (so you can't have a dog that barks all night and keeps everyone else up), then denying the accommodation is discriminating against the disabled, which is illegal. (However, the person is fully responsible for keeping the animal well behaved and all damages that it does).

This does require the person to be disabled. This can't be used to let a random person take their pet into an apartment that doesn't allow pets. Simply someone having an anxiety or depression diagnosis isn't even enough, because its built around the person being disabled, not simply having an impairment. However for those of us who are disabled it can mean a lot.

So, we went through this and talked to my doctor and she'll write up letters whenever I need her to. She specifically has stated on multiple occasions that she thinks I should have a cat.

On December 31st, we got me a cat. We'd been looking at a kitten the week before but found out we'd not be able to get it, then went and looked at the local cat shelter, and ended up coming home with a kitty.

She's a nice cat. Just over a year old, very playful, very alert, and surprisingly good at learning not to scratch things or not to sit on my computer (though she's still working on those). She also is crazy in certain manners like how she'll meow at you to come and stand in the kitchen with her so she doesn't have to be alone in the room while she eats. We named her Kitty Ada after Ada Lovelace (Kitty is her title, in place of Lady)

We've definitely already seen situations that she's helped me. If either of us are upset she comes up and meows very clearly saying "You're supposed to be petting me, not moping, cheer up and pet me already."

She also helps me regulate my emotions and identify when I'm upset. When I'm upset she'll come up to me, and her being there helps me not become more upset. In these situations I'm unable to go out of my way to try to regulate my own emotions because she's identifying them before I am.

However, probably the most relevant situation, is that she has already shown that she can prevent meltdowns. I get depressive meltdowns - didn't when I was younger but between not having animals around and dealing with much higher stress I started getting these. I also get shutdowns. Despite the fact that shutdowns tend to last longer than meltdowns, I find them easier to deal with. I was faced with something that is a huge meltdown trigger for me and managed to hold it off until I was around Ada. I sat down and she came up next to me and I started petting her. Somehow she managed to cause me to disassociate in a positive way, externalize my being upset, and just have me sitting there thinking "I have a kitty." I also lost speech for 3 hours, but I didn't have any sobbing fit. It was very good of her.

I'm definitely glad we went through and got me a cat. Some things will be harder now, but she's definitely helping me as well.

What do you get out of a diagnosis.

Well, I said I was starting this because of being tired of answering the same questions over and over. This is one of those questions, it was just asked again and I had to start going through the mental list rather than just linking to a post like my eventual response will be. Anyways for a list of things that I've gotten out of my diagnosis and others have mentioned getting out of their diagnoses.

The ability to work with specialists

This is in particular what caused me to get my diagnosis. Most counselors and people of that sort don't actually have knowledge about the autistic spectrum - and if they do, then it is often doesn't include actually working with people on the spectrum, just a researcher's view of it. While these people don't necessarily work with only people with diagnoses, its unusual for one of them to have the time in their schedule to take on undiagnosed patients.

Various sorts of therapy covered by insurance

A decent number of states at this point have laws regarding insurance and the autistic spectrum. These laws vary wildly from it not being able to be counted as a pre-existing condition, to requiring coverage of things that are not necessarily otherwise covered. In Massachusetts, ARICA is worth looking into. Speech therapy, occupational therapy, and the like are required to be covered by at least some sort of insurance. I've not taken advantage of this but have had it recommended to me that I should look into sensory integration occupational therapy.

Accommodations at work, in school, or in other relevant places

Accommodations are the standard thing that people get out of a diagnosis. These vary from having more time on exams, to taking exams separate from the class, to having all instructions written instead of given verbally. Personally, when I eventually retake the GRE subject test, I'm going to be needing to request a separate room with a non-smoking proctor, and the room not having florescent light bulbs. When it comes to work, I'm going to have a huge challenge finding the right accommodations to deal with my sensory needs (other than we've figured out I need a closet or something that's mine to hide in if I start getting a migraine from things getting to be too much).

Generic 'for disabled people' monetarily-based things from the government

These seemed just worth grouping together because they're all related. I get reduced fare public transit tickets because of my Asperger's (which is incredibly nice with the inability to drive and lack of income). It can be enough to qualify people for SSI and/or SSDI. With SSI you qualify for things like food stamps, Mass Health, and such without employment. In general, if someone need monetary assistance it'd be the huge pain that it is with the government, but its far more of an option than without a diagnosis.

Others understanding you better

This can actually be far more than people give it credit for. Assumptions that some of your actions aren't for other reasons going away can mean a lot.

A diagnostic report that helps you understand yourself better

When you get a diagnosis, you don't just get a paper with a label on it, you get a full report of the testing done. This is a description of some of your strengths and weaknesses, which you may have not known about before. This might be because of not having realized that people functioned any differently than you did. It wasn't until reading my diagnosis report that I realized that not everyone fully analyzed a situation before deciding whether something was "awkward" or such. The idea of intuitive understanding of social situations had never occured to me.

The diagnostic report also allows you to inform others about yourself

My doctor is interested in doing everything she can do to help me, but hasn't worked with another patient with an ASD before. She has a copy of my diagnostic report as well and is using that to help to understand me. The report is a formal way of giving her this information. It is also not me needing to explain details about myself that I have no idea how to put into words.

There may be more of these, and if I come up with more then I'll edit this, but this should at least be a useful list that I can link to.