Book Review: The Speed of Dark

This book seems to be popular right now, its a book about an autistic character (and a verbal autistic character who isn't talking about Asperger's even rarer in terms of what gets written about), and I read it earlier this week. So, it seemed straightforward that I should write about it, seeing as I had some strong opinions, both positive and negative about the book.

Overall I think the book had the most accurate portrayal of autistic character I've read in fiction. It did get stereotypical at times, but less so than usual when dealing with autism and fiction. The characters also were actual characters, not just "lets read the DSM criteria and call that a character", as well as were actually allowed strengths, even if the strengths were stereotypical of autism. Things like sensory processing were actually taken into account, as well as stimming being helpful to the individual. Beyond just the autism itself, there was also getting into how people treat autistic people, the fact that different people have different views about their autism, and those sorts of details.

The number of details was impressive. The author mentions in the section after the book that she has an autistic son who's in high school now, and it shows that she actually knows something about the spectrum. It wasn't just someone writing about autism because its the current popular subject. That was definitely a good thing.

But, of course, it wasn't done as well as it should have been. Overall my views was that they took a good thing and they ruined it.

(After here, there will be plot spoilers, so here is your warning)

Stop combating me, start helping me make it better for the children of today

I'm denied help, even if the help is even available. I want to work, but jobs aren't open to dealing with someone like me. I struggle along, my senses giving me false data, but the therapy to help me learn how to deal with this false data through adaptive tech, learning other methods, and training my body, is denied by insurance repetitively.

Bus drivers tell me how I can't be disabled when I use my disability pass, no matter how much my symptoms are actually affecting me. In public, people scream at me, telling me how I'm lying for trying to cope, instead of something as simple as taking a seat on the bus when it would give me a migraine. In multiple, completely different, scenarios, I'm told speech is the only way to deal with things, even when that's completely wrong.

I'm screamed at, not allowed to get things done, denied help, being taught that I'm innately wrong, and told that it's for my own good.

You're not combating autism and you're not doing a thing to make it better for me. You're part of this. You're part of this society, who says that its for my own good to get denied the help to actually learn how to live as an autistic person rather than be stuck as a burden while screaming about how worthless we are because we're burdens. Autistic people shouldn't exist? Right? That's what combating autism is? Telling us how we shouldn't exist?

Stop it. Stop combating me. Stop combating all of us. Fix it. Help us. We deserve help. We're other people here who are being pushed around and abused at an absurd rate, which I'm not even comfortable looking up anymore, because its so high, because what autistic therapy is frequency compliancy training, along with the rest of the world training us that we're worthless and need to follow them. Because we're not good enough how we are.

Instead of putting less than 2.5% of the funding into research on services. Actually pay attention to services. Actually pay attention how to help us live as autistic people. Because that's who we are. That's how we live. We won't swap to being neurotypical. Going through and figuring out how do we live as autistic people, through things like occupational therapy, things like AAC apps, and things like PCAs are what we're needing. Not stim suppression. Help us.

Help us figure out employment and if we want it higher education. It's not necessary for us to be worth it, but really, it'd be better for everyone else too, then, because we can be great employees. We're just stuck without employment, even when we want it.

Help us learn how to say no. And help us have people listen.

Help us have society listen.

Help us say that combating autism isn't getting rid of it. It's helping us live. Without attacks every day.

Stop combating me. Start combating the attacks. And instead, make it so that the world the autistic children currently live in isn't such that it will be such a hostile place when they grow up. Instead, its not somewhere where they struggle every day in order to get through the day because of everyone and everything around them. Make it better for them. Because if we work on this, it will be better for them.

Isn't that what combating autism is about? Making the world better for the autistic children of today?

I am not a burden (Day of Mourning 2014)

I am not a burden. I need to repeat that, because the opposite is told to me too frequently, and digs in, and catches hold. I am not a burden.

I am autistic. I am disabled. I am not a burden. I am a person.

You were nine years old. You had a life ahead of you. Then you didn't. You were a person. Not a burden.

You were twenty-four, or ten, or fifteen, or forty. All of you, you had lives ahead of you. And all of you were PEOPLE, not burdens.

None of us are burdens. No matter what's said to us.

It's not okay that you were killed, that you were murdered. That your lives were snatched from you, just because you were disabled, just because you were different.

It's not okay, that people are saying that it is fine that this was done because you were a "burden" and that you made your family's lives too difficult.

It's not okay that people think that our LIVES are less valuable than theirs.

It's not okay that people speak ill of the dead, justifying the actions of murderers.

It's not okay.

I'm not a burden. If I were murdered, would they care? Would society just say, that she doesn't work, that she's just autistic, that she makes people take care of her, that she's not a real person?

When I'm kicked down and abused, am I the one at fault, or is the abuser? Is it because I'm autistic that I deserve it?

It's not okay.

Every time someone says that I am a burden, I need to step up and say that I am not.

Every time that someone says it was not a big deal to kill you because you couldn't speak, I need to step up an speak, because I have a voice, that you do not, because your life was prematurely ended.

Every time someone says that the parents lives are too hard, so its not unexpected for them to do these things, I need to step up and say that autism isn't about the parents, and murders are about those who's lives were taken. Because disabled people are people too.

And every day, I need to work to make autism, to make disability, to make being different in any way, something that is treated better by people around me. Whether on the bus, in a school, or at my home, I need to say, it is not scary to be around someone who is different, but it is important to treat them the way they need to be treated, rather than the way the average person is treated.

I am not a burden. You were not. The rest us of who are living are not either. I need to hope that there are no more of you, no matter how unlikely that will be at the moment, because maybe, hopefully, you were the last.

Nobody deserves to be killed by a parent. Nobody deserves to be killed because they are disabled. Nobody.

I'm sorry it had to happen to you.

Being articulate...

You're so articulate. You communicate so well.

People see these as compliments. They are compliments. They don't see the other side of them though, the struggle, the fact that, while being articulate, that's not always there, its only about what can be communicated about. They don't see that they only see what gets out, not what stays in.

People can realize that someone who's nonverbal has a challenge communicating to the world. They at least frequently don't understand what it is, or how it feels like, but that there is one. People tend to be very sight-centric and voice-centric, and push everything around those two things, so when you cannot speak, you are not communicating. In truth, someone who isn't speaking might be communicating, and someone who is speaking, also struggles.

You read my posts explaining how I am, I'm articulate. I communicate well. That's what people keep telling me.

But what about when people keep asking what I want to do, and even if I know something, its such an undefined concept in my mind, I can't figure out how to speak it. And I try to, and it gets confused and scrambled, and I get unable to understand what's going on. And people around me start getting impatient, wanting an answer, because I'm taking a long time to answer a simple question. But its not a simple question, its something that takes figuring out an answer, sorting through the details, converting it into words, filtering the words to speech, and talking. And its confusing to go through that when its forced instead of natural. And then eventually, I probably say "I don't know", because at that point I have no clue, even if I had an idea in the first place. And it likely is quiet, because my voice won't let me speak very loud.

That's fine. That's just not knowing what I want to do. But its going through and trying to deal with this mental stages of communication, that I have to go through in order to communicate when its not natural. I deal with both, natural, when I just know what to do, and unnatural, where I have to concentrate and figure out how to convert thoughts into words, and it takes time.

People usually only see the former. They don't believe the latter exists.

They don't see me crying in bed, trying to explain things, but it just being so difficult to deal with that I'm withdrawing, and crying, because crying makes it easier to cope.

They don't see week after week of trying to get the same idea across, and the problem being me, not being able to get the ideas that make so much sense in my head, to come out in words that make sense.

They don't see me explaining how to do things to people, and leaving out half the explanation as I'm mentally sorting through everything.

They don't see, that every time I go to a doctor, I end up with not having the doctor understand some of my symptoms, because I can't get them explained in words.

Words are hard. Using them, converting to them, struggling to get ideas out, when only a small fraction of the idea is coming every time you speak.

But then, it is enough. You're called articulate. Praised on how well you communicate. Told you can't understand what its like to struggle with communicating with speech.

And you go back, and try again. Maybe eventually, ideas will get through enough for others to understand. Maybe eventually, words will find their way, and it won't be stuck with needing to cling instead of use words because words are too confusing and too overwhelming. Maybe eventually, the words that come out will be ones that are understood by those around you. Maybe eventually.

Until then, its time to just keep trying to figure out ways to get thoughts onto the page, if its repeating the ideas, if its writing them, or if its clinging when needed.

And hoping, that maybe people will understand, that you can both be articulate, and struggle at the same time.

What is autism?

What is autism?

Living a life that others don't understand. Being told that you aren't "really disabled" because of being verbal. And at the same time being told that you are not good enough, that you need to be normal, that you need to act how they do. Struggling alone. Doing the best you can to be the best you can. And not being acknowledged, because people want something else.

What is autism?

Autism is being able to identify individual learning styles quickly because we cannot understanding people intuitively, and need to analyse every thing actively. Learning styles are no different than attempting to figure out anything else about the person.

Autism is needing to say that you can't do something, and not knowing when to, or how to, and if it gets through that to actually saying something, then not actually being listened to.

Autism is overwhelming joy with something as simple as a toy made for a 2 year old. Simplicity is not a thing to overlook or look down on.

Autism is not understanding the world around you, and needing to make sense of it; not always being aware of everything, or being aware of too much.

Autism is learning about things in depth, taking in all the information about subjects and being able to call it up any time its relevant.

Autism is being told that we don't live past 18. That autism is only for children. That we don't exist.

Autism is saying that typing is communication, handflapping is communication, and we'll fix that "we don't exist", we'll find our own way into the world, because we need to.

What is autism?

Simply us. And we're not broken.

Written for the "This is autism" flashblog

But what about those florescent lights?

I was going to make my post on time this year, I really was. But then things came up that were more important than writing a blog post. And now again, I vary between writing thousands of words because someone mentioned a topic that I wanted to reply to because they were wrong and not being able to pull up what I was going to write about on here. But, despite all that I'm going to write a post, even if its two days late, and even if there's a lot going on, and even if I don't remember what I was going to write about because so much is going on. And I'm going to make it meaningful.

Right now, what's meaningful to me and easy to talk about, sensory issues, so that is what I'll write about.

I don't hide from people that I'm on the spectrum and that I have bad sensory issues. It'd be rather hard to hide the sensory issues wearing blue glasses around, but still some people do overlook them and say that you can't notice. I question them sometimes, if I'm sitting sideways in a chair, wearing blue glasses, and stimming, but apparently this isn't enough to be visible sometimes.

Sensory issues can be invisible. Even more than other parts of autism. Social issues are visible if you're interacting with people. Communication issues, the same. Issues with change aren't immediately visible, but generally come up quickly, and are understood to be part of autism. Same with the other parts of RRBs. And well, stimming is usually visible, though apparently sometimes overlooked.

Sensory issues, when they're hypersensitivities at least (which within the HFA crowd seem to be the most common based on my experiences, though in SPD, hypersensitivities are actually less common than either hyposensitivities or seeking behaviors), are generally very internalized. The person reacts strongly, feels pain, doesn't process things properly, but doesn't show others very much. They don't scream out every time a florescent light turns on, but that doesn't change that the florescent light has an effect on them. It's an invisible reaction. Because others don't know. And others don't expect the environment could effect people so much.

Which leads to sensory issues being overlooked. We talk about communication. We talk about change. We talk about how many people are murdered by family members for being different. But, what about that simple florescent light?

Just for me? I hear those lights. They hurt. They feel like they're stabbing my brain with high frequency buzzing. They make me want to rip my ears off because it would hurt less than listening, and they jam my brain, because I have to listen through the buzzing. And try to concentrate through it. Eventually the buzzing might give me a migraine. A sudden noise of the sort might have other reactions, but lights are these constant offenders, like someone taking the static, turning it high frequency, putting it in headphones, and making you walk around wearing it so you're the only one who can hear it.

And then of course there's the vision part. They flicker. I don't know who gave people the idea that the flicker isn't visible to the human eye because its definitely visible. And both the flicker and the buzzing get worse as they age. A constant distraction of a fan flapping in front of your face, flip, flip, flip, flip, flip, because its flicker flicker flickering. And again, people deny it, because they don't see it. And because its so fast, again, not only is it distracting, its a slow buildup of too much getting too pain. Someone flicking lights on and off is irritating. Now, have that happen always in the room. It's normal. The eyes or the processing behind the eyes or something has to compensate though, and it doesn't so much like doing so (to put it not very scientifically), and eventually the eyes are tired, and hurt and tired, and the headache sets in.

And trying to process things with these - apparently my communication skills drop significantly as soon as you turn on a florescent light, and come back when you turn it off. Other sorts of processing is harder to test, but it generally gets messed up.

I know others who are more messed up by the lights. And others who are less messed up by the lights. I have other visual processing issues (headlights are one of my biggest ones), and many others in other senses. But, we don't need to look at dealing with everyone always. We have to look at doing what we can to make things better, when we can and how we can.

When that means in my bedroom, giving me LEDs, for when I can't use natural sunlight, that's a thing, because that's something that helps. And that's a thing that is worth mentioning even though it doesn't fix every visual processing issue I have, not to mention every sensory issue I have.

When that means, getting places to at least replace the bulbs earlier if they have to use florescents - that'd be a huge step.

But, right now, as I walk around, I'm in a way showing people that this matters, and when it comes up I explain. I'm wearing my tinted lenses, for myself, but doing it for myself is being open. And sometimes being open is enough to be saying a lot. Just wearing my lenses is enough for someone to say, why are there blue lenses? And that itself, is communicating to them about me, about autism, and about the importance of actually taking care of our sensory issues.

Handflapping

I don't remember flapping as a child.

Of course. I also remember it being easier to communicate, and all signs point to me being one of those unusual people who as they go through adolescence and early adulthood, get more stereotypical autistic.

Either way, I don't remember flapping as a child. I might have handflapped some, but I don't remember doing so. I know that in high school and since then I've had stims, and I'd assume I did before then, but what they were wasn't necessarily hand flapping.

I hand flap now. Mostly when alone, but not only. It varies entirely on what's going on.

But, the more I read about what people have gone through, the more I read, about Quiet Hands, the more I read about people having stims taken away and them ending up self harming, the more I end up hand flapping.

The first time I remember handflapping was after spending time with someone who flapped - it was like I picked it up from her. I started using the stim that she was using. From that, it started generalizing. I started having multiple different types of flaps. I now have an excited one, a hurrying one, a wanting a communicate one, a "this person gets it" one, a "I'm proud to be autistic" one (which comes out after reading well written things by autistic self advocates).

And while I don't remember flapping as a child, its a stim that feels like I can communicate through. Of all my stims, its the best to communicate through.

It makes so much sense that people hand flap.

I'm doing it more and more. And I'm not ashamed.

Because, really. Communication is communication. Curling up in a ball because you can't speak, is communication. Typing, and making your phone speak is communication. Hand flapping excitedly is communication.

Whoever says it all has to be speech is just wrong.

I can flap and people can learn what I'm thinking from that.

Quiet Hands might mean to many that they need to stop.

But to me, it means if they got hurt, then really, there's even more no reason to not be open about who I am as this becomes more and more natural. It makes me want to hand flap. It makes me want to not only show who I am, but use my hands to do so.

Flap away.

Noise

Reading, wanting to communicate, struggling to get ideas out. Okay, I'll sit down and write. I can do this now. It's a way to get ideas out. I can explain how I feel and how I live.

Right, I have stuff to do on this topic. That's a specific thing to do. Explaining about how life is harsh, and you can't just always focus on how you cope, because if you do that then you deny what people deal with.

Writing. Starting to get in the right mode. I can do this. It's starting to work. I've been stuck not managing to do this for months, but its starting to work now.

Type type. type type. type type.

People coming up and trying get me to do other stuff, interrupting all my thoughts. Losing it. Losing it all again. Don't want to lose it.

Please, let me keep the right mindset. Please. Wrapping up. Curling up. Smaller, smaller. Pulling in.

Walking away, realizing they were interrupting me, maybe kept it, back to trying. Writing quick ideas down to remember thoughts.

RING RING

Stupid phone.

SQUAWK

Too much noise.

Talking. So much talking. Squawking. Squawk squawk. Thoughts are running away. They're leaving.

Getting harder to string ideas together. Can communicate well enough to make people think I'm functioning, but mentally I'm lost. Anything I want to do is gone.

All the noises. Too many noises.

Clenching up. Don't want to hear it all.

Feel like I'm going to burst.

Want to just manage to do something effective. Why can't I be effective?

Bark bark bark bark

Even more. Why more?

Holding head. Typing. More headache.

Questions? I'm supposed to answer questions? Right, yes I can do that.

I'm going to just hide now. Maybe the noise will stop eventually.

Rock rock. rock rock

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.

Autistics Speaking Day (one month late)

One month ago was Autistics Speaking Day.

One month ago I thought of starting up this blog, because it was something I was meaning to do.

One month ago I sat down at the computer and was unable to write.

One month ago was one of the few days since I started participating in the autistic community that I did not make a forum post.

Three and a half weeks ago I wrote my first post on here

Yesterday I found this autistic speaking day post.

Today all I can say is that even though she clearly is more severely affected than I am, that's the absolute best Autistics Speaking Day post I have seen.

And today I say thank you for letting me have an easier time than others with this. Thank you for this not being something I've needed to say because while those days are rarer for me, I've not been pushed on one of those days.

(And on the note of that blog, this post of hers is the best written thing I've seen about the use of the word autistic instead of the "person-first language")

Lojban for communication about emotions

A few days ago jonored and I ended up in a discussion on IRC about what languages are good for discussing what languages are good for discussing various topics. Most people who were active in channel agreed that English is bad for discussing anything (other than it being the language we all knew), something like lojban is preferable for technical topics, and something like French is preferable for emotional topics. Their reasoning was that for topics that had anything to do with emotion you want a language that is more poetic than structured, so something like French is better than something like Lojban.

Of course I had to be the unusual one and I commented that I'd prefer something more structured in order to discuss emotions. I ended up discussing this more with jonored over lunch, and it came down to unstructured language is good for art-based communication (which is both a very powerful and useful mode of commutation, but not the default state for at least what seems to be most people). Simple discussion on the other hand, seems to me like highly structured, precise language would just be preferable.

Personally, I struggle a lot with any discussions about emotions. When I found the description of alexithymia on wikipedia earlier this year, it was the first time that I'd seen a description of anyone else having similar struggles with identifying and discussing emotions. It also was the first time that I'd heard that other traits of mine, such as the scarcity of fantasies, might be also associated with the same basic trait of mine. I do struggle with all three of identifying my emotions, translating my emotions into any spoken language rather than the generic concepts that I think in, and communication of emotions with other people.

In particular, the challenge I have with the communicating emotions once I can identify them in myself aspect comes from multiple aspects; two primary aspects beyond the simple translating thoughts to spoken (or typed) language are a need for what I say to be sufficiently precise and emotions just being a sufficiently complex problem in which applying logic does not allow for me to just go through the analysis and return an answer within even a semi-reasonable amount of time. (Not having responded to 'what do you think about foo?' within an hour is not reasonable when it comes to real-time communication.)

The discussion on IRC lead jonored to wonder, would it be easier for me to discuss emotions if I was using the system for emotions in Lojban rather than attempting to communicate via English and the non-verbal methods which ASDs are associated with weaknesses in. Rather than so many different words and the idea that one word 'should' in some situations suffice if you choose the correct one (no matter how crazy of an idea that is), this would allow people like me to construct the best description from a short enough list of ideas that it can far more reasonably be applied analytically.

The relevant part of Lojban is the attitudinal system. There are written words for 39 different concepts and their negations that tend to be communicated through non-verbal communication. These words, some intensities, some domains, and various other associated ideas are combined into a concept that is the emotional state being discussed. As there are only 39 of these which are explicitly combined, this is a short enough list that running through the list pulling out all identifiable aspects is a seemingly feasible idea.

So, jonored had me read through that chapter while he wrote up a reference sheet for me, and has been trying to help me get used to it by asking questions for me to reply to using that in particular. Unfortunately this is requiring quite a bit of care because if he asks a question that is too hard for me for some reason or another, I still won't respond for over an hour (and then not respond in a useful manner, more start stressing out about the fact I've not responded and this is wrong of me). The basic question is whether this would end up helping me be able to translate identified emotions into language and communicate them without being overwhelmed. There's not been nearly enough time to see how much it'll really help, but it seems a promising idea. At the very least the way its formatted allows for a list of words to be run through analytically without the problem that every other one of those that I've seen has of implying very strongly that only one word applies in any situation, or that there's a word that matters "most" somehow that is the one that "should" be given. I'm going to try to actually look into this rather than just face extreme perfectionism every time it comes up, and hopefully it helps some.

Whether or not it helps me it seems like it could help some people with alexithymia.

What is Asperger's?

Asperger's Syndrome, like everything on the autistic spectrum, is incredibly hard to describe because it varies so widely between people. One of the more common lines I've seen is "If you've met one person with Asperger's Syndrome you've met one person with Asperger's Syndrome." However, there is still the possibility of a basic description.

Asperger's Syndrome is an autistic spectrum disorder (ASD) along with Autistic Disorder (also known as classic autism or Kanner's autism - classic autism being my preference but not the label in the diagnostic manuals), and PDD-NOS. Asperger's Syndrome is often thought of as "milder" or "higher functioning" than classic autism, though these words mean little and there is a wide range of severity of symptoms among people in all parts of the spectrum.

Specifically, Asperger's Syndrome is an ASD in which there is no delay in speech, self-help skills, or creativity about the environment.  It is specifically associated with the descriptions given by Hans Asperger, an austrian physician who described the similarity of traits between 4 patients of his in a 1944 paper. As his paper was not translated into English until 1989, and autism as a concept separate than schizophrenia was first made in 1943, Asperger's Syndrome is a relatively new diagnosis.

Possibly the best way to define what Asperger's Syndrome is by the set of various diagnostic criteria.

The current version of the DSM, the diagnostic standards manual which is how diagnoses are made in the US is the DSM-IV, which came out in 1994. It was the first diagnosis manual with a diagnosis for Asperger's.

DSM-IV diagnostic criteria for Asperger's Syndrome

1. Qualitative impairment in social interaction, as manifested by at least two of the following:
   
   
   1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
   2. failure to develop peer relationships appropriate to developmental level
   3. a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
   4. lack of social or emotional reciprocity
   
   
2. Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
   
   1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
      
   2. apparently inflexible adherence to specific, nonfunctional routines or rituals
   3. stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
   4. persistent preoccupation with parts of objects
   
   
3. The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.
4. There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)
5. There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.
6. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
   

Note that this specifically talks about what people see rather than what's going on.

Also meaningful is noting the additional criteria for classic autism as something like 80% of people with Asperger's technically meet the criteria.

Additional Criteria for Autistic Disorder

Qualitative impairments in communication as manifested by at least one of the following:

1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
3. stereotyped and repetitive use of language or idiosyncratic language
4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

and
Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:

1. social interaction
2. language as used in social communication
3. symbolic or imaginative play

However, other diagnostic criteria are likely far more useful. There is a new proposed version for the DSM-5 (which is coming out in 2013), in which the Asperger's diagnosis is merged in with classic autism and PDD-NOS into just "autistic spectrum disorder".

That diagnostic criteria is:

DSM-5 Proposed Diagnostic Criteria

1. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
   
   
   1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
      
   2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
      
   3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play; and in making friends; to an apparent absence of interest in people
      
2. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
   
   1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
      
   2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
      
   3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
      
   4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
      
3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
   
4. Symptoms together limit and impair everyday functioning.
   

The most descriptive criteria, and closest to Asperger's writing, is however the Gillberg criteria, one which is rarely used but tends to be a very good description of Asperger's. This criteria is actually descriptive.

The Gillberg Criteria for Asperger's Syndrome

All of the following six criteria must be met for confirmation of diagnosis:

1. Severe impairment in reciprocal social interaction (at least two of the following)
   
   1. inability to interact with peers
      
   2. lack of desire to interact with peers
      
   3. lack of appreciation of social cues
      
   4. socially and emotionally inappropriate behavior
      
2. All-absorbing narrow interest (at least one of the following)
   1. exclusion of other activities
      
   2. repetitive adherence
      
   3. more rote than meaning
      
3. Imposition of routines and interests (at least one of the following)
   
   1. on self, in aspects of life
      
   2. on others
      
4. Speech and language problems (at least three of the following)
   
   1. delayed development
      
   2. superficially perfect expressive language
      
   3. formal, pedantic language
      
   4. odd prosody, peculiar voice characteristics
      
   5. impairment of comprehension including misinterpretations of literal/implied meanings
      
5. Non-verbal communication problems (at least one of the following)
   1. limited use of gestures
      
   2. clumsy/gauche body language
      
   3. limited facial expression
      
   4. inappropriate expression
      
   5. peculiar, stiff gaze
      
6. Motor clumsiness: poor performance on neurodevelopmental examination
   

I personally find this last criteria by far the most informative, and tend to use it to show people for what's different between just being "socially awkward" and Asperger's.

The thing that does need to be noted about all of these diagnostic criteria is that they're made for children. While plenty of of us still fully meet the criteria as adults, and in fact, if you don't meet the criteria you cannot be diagnosed even if you met it when you were younger, there will be changes between a child and an adult. Adults often have learned how to make eye contact (at least to some degree), have made progress on physical clumsiness, and have created large numbers of coping skills of various levels of effectiveness. This does not change that this is a description of that person, even when they are able to memorize a script of what is to be said in each situation and have learned that carrying certain items make drastic changes to their abilities.