It’s Not Just A Word

…there is an incredible amount of hatred towards the class of people who wear the label “developmentally disabled.” … As if just being suspected of being “subnormal” was itself a crime. Just how horrible is it to be considered part of the population that struggles to learn? -David Hingsburger “On Apology and Pain.” A Little Behind

 

Amanda Baggs is a nonverbal Autistic woman, a diagnosed “idiot-savant”, and a champion of disability rights. In one powerful example of her work, entitled simply “On Being Considered “Retarded” ” she types “A lot of people think that cognitively disabled people are not full persons.”(Baggs, 2006, Emphasis added) At first glance this is quite an audacious claim. But enter any American high school, and listen to the dialogue. Count the number of times a foolish peer is called retard, how many homework assignments are retarded, and, coincidentally (or is it a coincidence at all?), how the special education students, students who very obviously look and speak like someone with an intellectual disability, perhaps even a diagnosis of mental retardation, are shunted aside and ignored. Changing the language we use may not alleviate all of the very real discrimination against disabled people, but it starts a conversation and sets an important tone.

Language and society are as intertwined as a chicken and an egg. The language a culture uses is telltale evidence of the values and beliefs of that culture. (Nilsen)

The words we use and the way we use them serve as a window to our thinking. What does it say when a special education teacher refuses to utter a child’s diagnosis of Mental Retardation aloud because she chokes on such an ugly word? What does it signify when the word we use for intellectual disability is also a slur? Slurs are used to distance, dehumanize, and discriminate against a group of people; what does this say about society’s attitudes towards the disabled? Pick up a paper and read about the Judge Rotenberg Educational Center, where intellectually disabled students receive electric shocks for misbehavior. Read about the school in Texas where intellectually disabled young men were forced to fight for the entertainment of the staff. The reality, it quickly becomes apparent, is that intellectually disabled persons are not respected or valued in our society.

There is a clear stratification of status between people of average or higher intelligence and people with intellectual disabilities. After all, we don’t insult someone by calling them gifted. Intellectually normative people aren’t described as children in the bodies of adults, and thirty years ago they weren’t being forcibly sterilized. Most of all, their cognitive makeup is not used as a joke, an insult, or a slur.

Cognitively typical people hold all of the power here. This is a literal fact—there are no disabled people operating the shock packs at the Judge Rotenberg Educational Center; they are too busy being hooked up to the electrodes. But the reality doesn’t have to be this way. In many important ways, it isn’t. People with Down Syndrome are now going to college. Autistics are forming their own self advocacy organizations. There are now intellectually disabled people advising Special Olympics, appearing in movies, composing music, even running their own businesses. They are advocating for themselves, and for change. And among the first items on their agenda?

Language.

The campaign to end the “r-word”, sponsored by Special Olympics, seeks to put the word retard on the same plane as nigger. Not because swapping intellectual disability for mentally deficient will end all of the abuse and discrimination, but because it will signal that the status categories have changed. The day that a discriminated group gets to define itself on its own terms, the day that a discriminated group stands up and says you cannot talk about us like that, is the day change starts.

Amanda Baggs types

My objections to the way people are underestimated are not tied to whether the people fit some word called ‘retarded” or not, they’re about people’s humanity not being recognized.

Language is political, a clue-swapping exchange of meaning and status and power dynamics. If current power misbalances and stratifications based on ability are going to changed, language provides a natural place to start. If we want society to think of cognitively different persons as people, we need to speak of them as such, with respect and dignity. We need to stop calling them retards.

 

 

Bibliography

Baggs, Amanda. “On Being Considered “Retarded”.” Youtube Youtube, 31 Oct. 2006. Web. 4 Nov. 2009 <http://www.youtube.com/watch?v=qn70gPukdtY >.

“Disabled men forced into ‘Fight Club’ battles: police.” ABC News ABC, 11 Mar. 2009. Web. 4 Nov. 2009 <http://www.abc.net.au/news/stories/2009/03/11/2512709.htm>.

Gonnerman, Jennifer. “Disabled men forced into ‘Fight Club’ battles: police.” Mother Jones Mother Jones, 20 Aug. 2007. Web. 4 Nov. 2009 <http://www.motherjones.com/politics/2007/08/school-shock>.

Nilsen, Alleen P. “Sexism In English: A 1990s Update.” About Language. Eds. William H. Roberts and Gregoire Turgeon. Boston: Houghton Mifflin Company, 1998. 50. Print.

Stray Thoughts

A much, much better description of the social model of disability than I have provided can be found here. I’m mostly posting it so I’ll remember it. It’s so easy to get confused and have my words twist up when I’m discussing a new idea, but this explanation  brings my stray thoughts back on track.

Speaking of stray thoughts, here are a few of mine (all autism/disability related: my thoughts on Chemistry and Karl Popper, for example, get turned into essays for class!)

1. “I never would have guessed”

I get this a lot when I tell someone I’m Autistic, even after I clarify that it’s Asperger’s. Now, I suppose I should not be surprised or worried about this statement–after all, few people have as finely an attuned Autist-radar as I do.  A simple admittance of deficit should not sound like a threat to me.

But it always does.

Because people have this tendency to not believe me. I have to prove myself every time, and waving a doctor’s note under their nose is rarely enough. No. I have to struggle to find the right words to make them understand that yes, I am doing an amazing job of passing, of faking it, but it’s damn hard and my ability to pass does not negate my disability. That there are two worlds I inhabit, the stimmy one inside my head and the smiling one you see in class. The explanation I’ve found most effective is simply to tell that what I have to do in order to pass, and what I cannot do.

What I Change In Order To Pass.

How I walk.

My natural body language.

How I respond to stress.

What I say.

How I say it.

What You See When I’m Passing.

You see someone who walks on the flats of her feet, who talks with her hands and sometimes flaps them for a second before she snatches them to her side. You see a girl who taps and touches things more than normal, who’s always bouncing her legs or doodling in her notebooks. This girl doesn’t look at you very often, and she may seem aloof or rude, but that makes no sense, because she’s always smiling. She says some things that sound weird and off more often than not, but she’s also pretty intelligent, and she talks fast and with great apparent confidence. She is open and friendly with you, but you get the feeling that she thinks you’re closer than you are. She’s okay–interacting with her isn’t painful, but it’s less rewarding than interacting with your friends. Not enough for you to consciously notice, just enough for you to forget to invite her to things. After all, she rarely initiates conversation, unless it’s on something she’s thinking about.

She’s just another person, nothing special.

And Here Is What My Head Is Like.

Want to flap, want to spin, want to jump, but no, no, can’t do that. Stop tapping on the table, stop pushing the lid on your mason jar of water, look at Nalini when she talks to you, check in with your eyes. Do I have a script for this? Oh no, I don’t, what am I going to say? Just say it. Oh, well, that came out wrong. That’s not what I meant. Fake it. Fakeitfakeitfakeit. Oh God, she hates me now doesn’t she. That was so dumb, why did I say that. That was the wrong things to say. I hate talking. Oh no, where are we? Wait for others to speak. Waitwait. I didn’t understand that. Fake it. Seemed funny. Laugh. Throw something out. Make them laugh so they won’t eat me. Fakeitfakeitfakeit.

What I Can Do.

I can change how I walk. I can keep most of my natural body language bottled up, only letting little bits leak out–the averted or fluctuating gaze, the hands flapping when I laugh or painting when I talk, the facial muscles never quite moving right. I can smile all the time, I can listen to the sounds people make and watch their movements and maybe pull some information out of that. I can laugh and trivialize what I’m saying so that, if it’s wrong, people won’t mind. I can throw out some generic words strung together to make people laugh or relax. I can, sometimes, be a part of that intricate little dance of meaningless supporting gestures that tie people together, although this is a recent discovery.

And that’s a lot. I can do more than a lot of people.

But.

Here’s What I Can’t Do.

I can’t engage in what’s called “rapport talk”–when the conversation stops being two partners sharing reports, and turns into something between friends. I can’t make people remember me, connect to me, and want to have fun with me. I can’t fill up empty conversational spaces. I can’t figure out what people are thinking, although I often know what they’re going to say–simple pattern analysis, you’d think it would help me mindread, but it doesn’t. I don’t know the exact right thing to do or say. I can get along with everyone except my peers, unless I can’t figure them out either.

I live in a world of constant social phobia and paralysis. My brain is filled with cognitive distortions that prevent me from getting to the truth of a given interaction. But unlike a simple anxiety disorder, these distortions occur because I truly do not understand how people work or what they think of me. I do the best I can with the tools I have–but these tools are ill-suited for the job, and give me nightmarish meanings for everyday exchanges.

And I guess what I’m getting to is this. It’s all well and good for someone to not believe I am disabled. But they’ve never spent a time in my head. They lack any and all understanding of how I think–and Autism is a brain disorder. It’s all about thinking. They can say I’m normal, but it’s impossible that everyone feels and thinks this way all the time. They look at me and assume that their neuortypical mind-reading skills will work on me. Of course they come away with the wrong answer!

2. Desire To Be Around People

This is something I struggle with finding words for a LOT. On the one hand, I really want to be included in people’s lives. When a group of my friends gets together, I want to be there. But I don’t know why. It’s not like I fit in, or connect, or have a whole lot of fun. Do I want to connect? Yes, maybe. I don’t know.

I really just don’t know.

And I’m expected to. But I don’t have an answer for it, or even the words to go looking for one. All I have are pits in my stomach when I get left out, and a manic, flapping feeling when I’m brought in–if it goes well. All I have are two years of theater wherein I watched everyone else clump together into an impenetrable knot, where I was appreciated in my place, but any attempts to break in where rebuffed. If I don’t want to connect to people, why did that hurt so much? Why can’t I be like Bones, like the stereotypical Autie, and simply not care?

Is it that I care, not about the connection, but about the rejection? About the principle of it all?

For Lurker

In my last entry But You Seem So Normal, a commenter named “Lurker” posted many a comment questioning some of my basic assumptions. My reply to this latest comment seems worth an essay in and of itself, so hear it is. Lurker, I apologize for the delay in response.

Society doesn’t just make disability out of impairments in senseless intentional ways. The abilities that are considered needed, the same ones which are indeed needed, the ones without enough of which, one is disabled, are the ones that are necessary for the valuable things that people do and try to do.

I would like to clarify a few concepts. First, that society in the social model of disability is being senseless or intentional. It is rarely that simple. I really don’t think that society woke up one day and said “We’re going to oppress everyone who is Deaf!” It just sort of happens, do to the nature of society.

Society values normative behavior. It appreciates diversity to an extent, but it is simply easier to operate in a society in which everyone has roughly uniform basic abilities. People who lack these, then, become perceived as less valuable, less a part of the community, more impaired than they are–become disabled.

Society sets the standards on value. It tries, generally, to make these standards accessible. But of course, everything can’t work uniformly for everyone, and so some people, due to specific impairments, cannot do what is considered valuable. But just because a society, just because you yourself think something is valuable doesn’t mean it actually, absolutely, intrinsically is. When you come right down to it, things are either helpful for survival or they are not, and one thing can be more useful than another in a certain context.

But it’s all about context.

And so in a sense we agree that

Even if the specific things that those in a society do and try to do change over time, they never lose their basis in the nature of trying to ensure and prolong survival, trying to understand and manipulate the environment they are a part of, and trying to experience various forms of pleasure which even though is a goal in and of itself, is related to the first two goals.

But the range of things which meet these goals is so broad that no one person can hope to have every one. Stimming may not feed you, but it manipulates the environment and provides pleasure. And if other people are capable of feeding you, why is it a big deal that you can’t feed yourself? In the end, you still get feed.

That, I think, will be the crux of our disagreement. Because I don’t see dependence as inherently a bad thing–I think our society makes it that way. And you, it seems, couldn’t disagree more. So explain yourself, coherently. Why is dependence evil? Humans, unlike many other organisms, simply are not designed to survive all by themselves. So what is wrong with dependence? Even more dependence than normative?

Why is independent living the end-all-and-be-all of life? There can be dignity and self-determination in dependence–I’ve seen it myself. You’re making things very black-and-white, when the reality is entirely gray.

And there’s another assumption you’re making, and it’s rather important. You assume that they way our brains typically work now, the way we survive, is the way we must. And that simply is not supported. There is absolutely no reason why we need to rely on sight to the exclusion of all other sense–yet we do. That’s only a simple, basic example. There are many different ways of structuring human existence.  Our current history does not necessarily point to the superior route.

Which abilities society makes a lack thereof disabilities out of, are not arbitrary at all, and can’t be avoided. There aren’t any mentally based abilities that society wouldn’t value. Depending on some circumstances, what amounts of ability are necessary to have independence can vary somewhat, but that doesn’t change the reality on how lack of ability precludes independence.

Humans don’t exist independently. We exist in societies, in societies which operate on give-and-take, on compensating for one person’s deficit with a strength of your own. A person alone might be able to feed and clothe themselves–but probably not. It’s always taken groups. Why shouldn’t a group include a mentally impaired person?

Because they can’t do anything? Because they can’t produce anything of value?

That’s eugneics. That’s not true at all. And if someone insists on seeing things that way, I can’t change it. It’s your poison.

Mental capabilities are really the basis of what individuals do and experience, and are what makes the things they do according to basic goals possible. Physical capability presupposes mental ability, and its direct carrying out of tasks and its role as intermediary between one’s thoughts and the environment to bring sensory information for interpretation, isn’t directly significant to the essence of what individuals can do. It’s not as difficult to deal with physical disabilities, as mental capabilities are really what determine what specific things are done.

This reveals a complete lack of knowledge about the reality of impairment. Physical capability has absolutely nothing to do with mental capability, and mental capabilities are no more the basis of what we “do and experience” than physical capabilities. Physical capabilities are EXTREMELY difficult to deal with, and really do determine what gets done. If I can’t walk, I can’t walk. It’s the same as if I can’t count–which, incidentally, even 2 month olds can. It’s language which determines how far we can go with it, as with so many other things.

Your emphasis on mental capabilities is truly bizarre. Physical capabilities have the same problems, and are equally as easy/difficult to accommodate. But I don’t see anyone screaming that a blind person can have no dignity or self-determination because they have to ask someone else to read for them. Why?

Because society adapts for that.

An impairment is an impairment is an impairment. It lessens your ability/likelihood to execute x function independently. That’s not a positive thing. But it does not have to be disabling.

Unless, of course, the focus becomes the impairment, and acting “normal”, and looking for a “cure”, and whining and wailing instead of actually helping. Then, then my friend, it becomes a disability.

I read that and I’m not impressed by the spin you put on things which truly are awful.

See? The problem is your focus! It’s not awful. James is a very happy person. He’s got manipulating the environment and generating pleasure down pat. As for basic survival? He’s learning that, and it’s a process, and he may never be able to be dropped in the woods and survive–but neither can you, I’m willing to bet. There is a continuum between that and being able to feed yourself, and you may be at a different point than him on that continuum, may be more independent, but that doesn’t make you better.

You know, the ARC has shifted it’s focus from IQ to Level Of Support Needed For Daily Life. And yes, James is pretty high on that. But in a society that values him and what he can do, that doesn’t matter.

I do not have a rose-colored-glasses view of the world. James will probably never be able to go grocery shopping, to cook, to do laundry. He will need intensive support. He is severely impaired, and any interventions that help to alleviate this impairment would probably be a good thing.

But he does not have to be disabled. There is no reason that his personal limitations should affect him as a member of society. There is no reason his independence should be tied to his worth or his value. He operates on a specific and valid part of the continuum of independent living. That is ALL. Pity, outrage, pleas for a cure, mourning, hysteria…they don’t help him. They disable him.  A supportive environment makes it so that his impairments aren’t an issue.

That’s what he needs.

A friend once said that impairment is an isolated physical fact. You can’t control the muscles in your hand. Disability is when that affects your functionality in greater society. You can’t get a job because you lack the required dexterity. That has been my focus.

The point is not “can someone live independently”. The question is “can someone function as a contributing member of society”.

To quote from my original essay, which sparked so much outrage:

So. Disability is a social construct, and is not synonymous with severe intellectual or physical impairment. But “disabled” is often used to mean someone who cannot live independently. This is certainly a disability in and of itself, a definite impairment, but it is not the end-all-and-be-all of the reality of disability. Independent living as a goal in life is culture-specific. There is no universal law saying it is best for everyone. There is also no law saying that someone who can live independently is not disabled.

The idea I have is that ability is not synoumnous with independence, and life is more complicated than independent living. That disability has many different faces, and they are painted by how society choses to handle physical, medical facts.

What’s so radical about that?

“But You Seem So Normal!”

If there’s one statement that makes my head hurt and my skin feel weird, it’s this. I say something along the lines of “By the way, I have Asperger’s Syndrome.” They say “Really? I can’t tell! You seem so normal.”

You seem so normal.

The first thing I always want to say, whether or not I do, is “yeah, well, trust me I’m NOT.” And I’m always surprised they think this. I shouldn’t be– when others don’t see you as having a giant DISABLED stamped across your forehead, the possibility never crosses their mind. I spent the first semester of sophomore year humming and banging my head against the wall of my first block class. My classmates noticed–some of them.  Some of them, not expecting that behavior in the middle of honors English, didn’t. Those who did notice did not make anything of it–or if they did, wrote it off as me being rude, unfocused, and arrogant, to say nothing of socially awkward and easily forgettable–my assigned high school role.

The implicit assumption is that serious disability only presents in those fucking retards down in Lifeskills, and since I was the best student in the class and fully integrated, I couldn’t be disabled.

So the first problem with “But you seem so normal!” is the underlying set of assumptions about what disability is and looks like.

Now, I know some people will argue that Asperger’s is not “serious” enough to count as a disability, let alone as a part of the Autism Spectrum.  Because I’m nothing like those…people. If, of course, they are considered “people” at all. I don’t smear feces, scream when something goes wrong, or spend all day stimming. I can read, write, and count–all quite well. I am discovering that I can take care of myself and live independently. So, in a sense, these skeptics are correct. I am not Intellectually Disabled. I am High Functioning in the sense that I can live independently. And these are not facts to be neglected.

Yet this is irrelevant.I may be less impaired than someone–that doesn’t make me any less disabled.

And why is that? Because disability, as opposed to impairment, is subjective. It’s a socio-medical construct. Impairment is objective–I can remember to take my meds, I can’t manage my banking by myself. Disability is when impairment and culture meet. This: http://generationyidealism.blogspot.com/2009/10/ability-and-disablity-i-socio-medical.html gives an excellent explanation of this phenomena. We discussed it at some length today in philosophy. Blindness, for example, is an impairment–you cannot see–but also a disability–our society values sight, is based on shared visual experiences, and a blind person is cut off from this. But it does not have to be this way. It is perfectly possible to function just fine without sight–I know several people who do.

So. Disability is a social construct, and is not synonymous with severe intellectual or physical impairment. But “disabled” is often used to mean someone who cannot live independently.  This is certainly a disability in and of itself, a definite impairment, but it is not the end-all-and-be-all of the reality of disability. Independent living as a goal in life is culture-specific. There is no universal law saying it is best for everyone. There is also no law saying that someone who can live independently is not disabled.

This, however, goes contrary to many people’s instinctive beliefs. Thus, when faced with someone who can live independently, who is not obviously impaired, they are confused. This person is not disabled! They seem so normal…

And part of this is because disability can be, usually is, subtle, and not easily recognized. And part of this is because being normal is, evidently, the goal. And to some of us, this is problematic. Not because we can’t be normal, but because why should we have to be?

Diversity, even in ability, is essential to the health, survival, and evolution of any group. There is no golden tablet saying that everyone needs to know and do and want the same things and perceive things the same way. Too often, normal is used in place of correct, and this simply isn’t true. Take sight as an example again. We assume that everyone’ visual acuity and color perception remain stable over the course of a day, that the way most people see something is the right way, that we are supposed to be able to see the individual leaves on trees. And that is how it is for most people. That doesn’t mean it’s right. Someone in my philosophy class said that creatures who couldn’t see couldn’t survive, didn’t evolve. That’s flat-out wrong, and it raises troubling questions of eugenics–we aren’t fish being bred for certain qualities. We are humans, massive bundles of diverse attributes and abilities, and it is generally accepted that there’s more than life to surviving, or at least more than one way to survive.

Nonetheless, a great deal of the popular attitudes towards disability seems to stem from this valuing of the normal. Another way this shows up is by referring to a disability as “mild”. I know a girl going to Smith who has CP. Yes, it is “mild”.  My Asperger’s is a “mild” form of Autism. When I say it is “mild”, I mean that I am less impaired than the students I work with. But I am still impaired. It is still a disability. All too often, “mild disability” means “it’s not real, not serious.”

And what is the criteria for “mild disability”?

Looking normal.

Perhaps there is a second criteria. If there is, it seems to be that the disability is “easy“, whatever the hell that is supposed to mean. But let me tell you that for some of us, there is nothing easy about not having the right words you need for a situation, not being able to sustain eye contact, about talking and walking and interacting and managing yourself. Just because something looks easy doesn’t mean it is. Or, to return to my thesis, just because someone looks normal doesn’t mean that they are.

So the next time someone tells you they have a disability, maybe reconsider what you will say.

Paradigm Shift

I remember the first time I realized other people had minds.

Perhaps I should explain. I am Autistic—PDD-NOS, High Functioning Autistic, Asperger’s—they all mean the same thing. I have problems with social communication, social interaction, and social imagination. A main cause of my difficulties is that, for the first thirteen years of my life, I did not perceive other people as having minds of their own. They knew different things than me and had different reactions to the same stimulus, and this was puzzling, but I gave it little thought. If they had thoughts at all, they were the same as mine; the idea of other people having real thoughts, differing in any way from mine, was incomprehensible. The concept of any else having a personal narrative, a conscious identity, had never entered my mind.

And then in gym class I missed a serve at volleyball, glanced over at Sarah, and I knew.

She was thinking. She had a stream of consciousness, a narrative, as complex and fast as mine ticker-taping through her head. She had a past, a history, a self. She was a character, not an alien I had to squeeze past in the hallways. She had a mind.

This changed everything. Absolutely everything. I glanced around the gym, and each face sent my head spinning. Every boy, every girl, even the teacher, had a story, an internal monologue, an inner life as rich and complex as mine. Everyone was just like me.

And yet horribly and painfully different.

Because you see, everyone had a mind of their own. They did not think like me. They had different thoughts, which I could no longer pretend to predict or understand. Worse yet, for all I knew, many of these thoughts would be about me.

It’s every Autistic’s worse nightmare. I knew no way to control what they thought of me, only that they did. I had no way of knowing whether or not these thoughts were positive or negative. I only knew that thoughts had consequences, and that these consequences could hurt me.

Everything changed.

I used to love staring at people’s eyes, mesmerized by the colors and patterns. Now I was too afraid to look; eyes were a reminder that others had minds, that they were thinking and I didn’t know what. It petrified and sickened me, the idea that every person had an incomprehensible world trapped behind their eyes. So I looked away.

I used to be content to sit next to people and write, parallel playing, engaging only when a conversation was interesting. But now I knew that, by interacting, people were trying to connect their separate worlds. I didn’t know how they did it, didn’t know how to do so myself, only knew that everyone else was linking up and I was always the odd one out. With a sense of other came a sense of self, and it was a lonely, isolating experience that made me want to grab their shoulders and demand their attention. But, of course, that didn’t work.

People had, in my mind, ceased to exist when I didn’t see them. And so I did not see friends after school, did not make the overtures necessary for friendship in the first place, did not build the connections and relationships that keep other people thinking of me when I’m not there, wanting my presence. After all, I didn’t want theirs. And now, suddenly, I did, I knew there was something to want, but I was too late to the exchange.

I spent the next four years struggling to learn the rules, to form relationships, to make connections, to become a part of a group. My life, which had been so simple before, was now 6.7 billion times more complicated. I tried to force my social skills to develop in a third of the time it typically takes, and of course they didn’t. I tried to force myself to be social, tried to force others to make room for me, and of course that didn’t work either. I had what psychologists consider the essential ingredient for forming satisfying peer relationships, and yet I could not connect.

I needed time to grow into this new paradigm. To realize how it works, to truly understand what the implications of this “theory of mind” were, to learn how to relax in it and dance the give-and-take routines, to adjust my way of thinking away from egocentrism to this new way of thinking. Slowly, piece by piece, my paradigm shifted.

A paradigm shift feels like a panic attack, and mine lasted four years. Four years where nothing was certain, everything was changing, everything I knew was wrong and nothing was right. Four years of shame and guilt and doubt. Four years of bending to accommodate new ways of thinking, bending so far I broke.

But then it was done. And now I am at college, in an environment ideally suited to the new experiences I need to substantiate this paradigm shift. I know that other people have their own minds now. We’ll see if I can take this new paradigm and apply it, make new discoveries, develop new theories about the world.

And perhaps, someday, my paradigm will shift yet again.

An Email

I sent to my professors.

****************************************

I am contacting you because I am registered with Student Disability Services, and I thought I should let you know a little bit about my disability before we meet. I’ve typed up a lot about it, but it’s really very simple. I am diagnosed with Asperger’s Syndrome.

Asperger’s is a form of Autism, but I don’t meet many of the stereotypes. For example, I like people, and want them to like me and connect with me. I am not a savant, although I do have a few unusual abilities. Mostly, I am an eager, hard-working young woman who loves to learn.

But I do have difficulties.

Most of my speech, with a few notable exceptions, is scripted or echolalic. You may hear me say “I don’t have the right words for this”. This means that I have something to say, but don’t know how. Perhaps 20% of the time, what I say is not what I really mean, although it may sound reasonable enough. This can distress me, but most of the time I can just fake it and carry on. Other times I will stop and say “That wasn’t right. I need to think about this for a moment.” Then I may try again. I can speak fluently about brains, politics, things I have read or studied, and myself, sometimes. If you want to have an important conversation with me, it will be easier for me to have it via email. I am much more fluent when I type.

I often sound perfectly typical. Please trust me—it takes a lot of effort to sound that way. Some days I can’t manage it. Most days I can carry on a conversation if another person is the one leading it and asking the questions, picking the topics, and orchestrating the whole thing. Unless it is in one of my special interests, spontaneous conversation is not something I find natural.

I will not make eye contact with you. I am not trying to be disrespectful or appear dishonest—eye contact makes me feel sick to my stomach. I am very sensitive to noise and touch, so I may shy away from people, move my chair, or cover my ears. Again, I am not trying to be disrespectful. I am simply trying to rearrange my environment so it is tolerable and I can focus. I often have body language or tone that does not match up with my intentions, and I have trouble understanding that of others. If I seem rude, disinterested, or am otherwise putting you off, PLEASE let me know. I don’t usually intend it, and I am typically unaware of it. But I can try to fix it if you tell me.

I have frequent panic attacks, and may need to leave the room to calm down. I will return as soon as I can. Similarly, I can be overwhelmed by sensory input, lots of information, or many instructions. I may need to leave and calm down. I will be back.

I may experience learning difficulties. I am a highly verbal and visual person, and things often have to be explained to me in a very particular way in order for me to understand. I may have to ask the same question several times before I can ask it correctly or get the response I need. I am not trying to be difficult—spoken information can be hard for me to absorb. I like to know exactly what to expect, and so I may ask you detailed questions about assignments. I can’t just “do what you think is right”. I need a framework. If I take up too much time asking questions, please remind me that I can email you or see you after class or at your office hours. I am always eager to learn in a way that is fair to the rest of the class. I will probably be a regular at your office hours and any study groups, and I may ask you about tutoring.

All of that being said…

My disability is, on the surface, quite minor. It is possible that you may never even notice that I appear much different from my peers. I am always eager to fit in and work hard, and I intend to be proactive and take such care of myself that I will be able to participate fully in and get the most out of your class. I look forward to learning from you.

If, during the class, the subject of Autism comes up, I would be willing, even happy, to discuss my experience or perspective. If you would like me to refrain, however, I can do that as well.

And of course, if you have any questions please ask me!

Thank you very much,

Me.

Attachment, Emotional Causes Of Autism, And What Autism Is

In reverse order:

1. Autism is a collection of behaviors with various neurological causes. It is marked by delayed and deviant social communication, social interaction, and imagination, along with sensory problems. But this is only the surface. Beneath the surface are processing problems and differences, different cognitive “styles”, brain integration and development issues, and conditions such as aphasia, oral dyspraxia, CAPD, OCD, and epilepsy. Possible gut/immune issues may be implicated as well. The Autistic behaviors are not caused by some mysterious force known as “Autism”, but by very real biological processes that exist, to some degree, in many if not all of us.

Autism is a set of co-occurring impairments. But these impairments can differ in appearance, severity, and cause.

Some points:

Donna Williams calls the mix of neurologies amongst Autistics “fruit salads”. Every fruit salad is different, sometimes dramatically so, yet they are all fruit salad. They do not contain fruit because they are labeled “fruit salad”–they are labeled “fruit salad” because they contain fruit. The traits make the label, not the other way around.

Everyone’s “fruit salad” will be different. There may be an Autistic with mainly brain integration issues, or one with mainly sensory processing problems, or one who is simply uninterested in people. Yet they are all still Autistic.

People can be high-functioning in one area and low-functioning in another. They can be “Aspies” in one aspect and “Auties” in another. Our current diagnostic framework is inaccurate and limiting in this sense.

2. Emotional Causes Of Autism

Donna Williams argues that there can be a wide variety of emotional and mood disorders underlying Autism. I disagree.  Various emotional and mood conditions can cause behaviors that mimic Autism, but Autism is best understood and defined as a neurological/cognitive disability, not an emotional one.  The fact that mood/emotional problems are more common in Autism merely indicates that when one thing goes differently in the brain, many other things can as well. Correlation does not equal causation.

3. Attachment.

On the other hand, an option that has often been overlooked by the researchers is the idea that some Autistics may simply not feel the need to connect with other people. It’s a shocking idea, and it boggles my mind but it may very well be true. More research is needed here!

On Assumptions

There are a lot of assumptions made about verbal ability and Autism by researchers. The prevailing assumption is that being a nonverbal autitic is a distinct condition, incompatible with the other known nonverbal conditions.

This has never made any sense to me.

Why can an Autistic not have oral dyspraxia, verbal aphasia, selective mutism, or specific brain damage? Why can an Autistic not having an auditory processing or specific language disorder to such an extent that normal speech is meaningless to them?

This discrepancy has never made sense to me. Autism is a collection of behaviors. It is not some mythical force. We should be looking at the specific underlying mechanisms, not just chalking it up to “Autism”.

Social Psychology Of Autism

I’ve been reading a lot of Donna Williams lately.  One of the theories she posits, and that I agree with, is that autism is a set of behaviors and processes with many different causes. There’s not one gene, one brain wiring, one cause of autism, but a million different interacting factors–genetic, environmental, medical, psychological, cognitive, etc. This is a conversation in and of itself, but I am interested more, right now, on three Autistic choices or responses or characteristics or paths, as you might call them, all characterized by aloofness.

These are: Giving up, avoidance, and being in your own world.

1.  Giving up.

Donna Williams posits that some Autists may find, for example, social interactions to be so frustrating, unrewarding, and painful that they not only cease engaging in them, but consciously avoid them.

I find this hypothesis believable, but I have no personal contact with it. Personally, I am always trying, no matter how hard socializing is. However, I do give up on and avoid many fine-motor or sensory activities, and at some points in class, I give up academically, or skip class.  I can see how this would translate over to personal connections. I wonder how much Autistic “aloofness” or other social difficulties that appear as lack of interest are actually self-protective mechanisms. I don’t know if I’ve ever met anyone like that though.

Is it possible that some Autists are being deliberately aloof? That it is not a question of “they would connect if they could” but rather “they find connection so overwhelming and debilitating that they prefer to avoid it”?

( A note: I say “connection” rather than “social interaction” because it seems to me that the purpose of the activity of social interaction is connection. An interaction is rewarding if a connection is made, unrewarding if not.)

It is often not the physical act of saying words that is so hard for an Autist, but the art of making and managing a connection. So much is involved here–eye contact, body language, tone, mirroring, knowing just what to say, spontaneous speech…it can be quite demanding. If you don’t have these skills innately, you can feel hopelessly behind and lost, and be overwhelmed not just by the demands of processing all the information and sorting out the correct response, but by your own panic and sense of helplessness.

There are a million minute steps involved in connection or any social signal or activity, and most people, most of the time, are oblivious to them. But for people who have difficulty holding multiple steps in their mind, the long and involved process of connection may be too much. It is a skill like any other. There are some people who’s voices smile, who’s every move puts you at ease and reassure you. The interaction leaves you feeling warm and content, if not outright happy. A connection was made, and it will be cherished.

These people are gifted.

And then there are some people who seem aloof or even rude. They don’t look at you when you talk, and their bodies lean away from yours. Their voices can be abrupt, too low, monotone, giving the impression of boredom or distaste. They won’t make spontaneous conversation with you, or actively listen and respond to what you are saying. You come away from this interaction uneasy, wondering if you did something wrong, or, if it was really bad, convinced that there is something wrong with this person. If you are lucky, you did not attach. If you are unlucky, you feel rejected or attacked.

These people are disabled.

And it can be quite depressing to have something that is important to you, important to others, and a huge part of your life, also be the area in which you are profoundly disabled. Is it any wonder you would give up? The question, it seems, should not be why do some Autistics give up on connecting but rather why do any Autistics still attempt to connect.

2. Avoidance.

Autistics, it is said, would connect with you, if only they could. But could it be that some still wouldn’t? Why could that be? Do they actively dislike people, or are they afraid of them, afraid of interaction, afraid of connection and losing themselves, avoidant of drawing attention to themselves?

Donna Williams says of these Autistics, though it could really apply to anyone:

As a consequence, they might find the world too socially invasive and emotionally draining, and find it extremely challenging to understand why others may be so motivated to have them join them in their world.

This is what stumps me. It is so alien to my own experiences. People confuse and overwhelm me, but their presence doesn’t drain. I don’t find simple questions and interactions as invasive, and it never occurred to me that others might. It really does boggle my mind.  What is it like to live in a world where every question, every smile, is an assault?

But just because it doesn’t happen to me doesn’t mean that it can’t happen at all. In fact, her proposition seems reasonable. If sensory experiences are invasive and daring to me, why can’t someone else experience social interaction similarly. Especially if they have a hard time holding a simultaneous sense of self and other, another point she raises.

Do these people feel the need to connect? If so, how do they manage it?

3. Being In Your Own World

Giving up and avoidance can give the appearance of being in one’s own world, as can problems of connection. Being a naturally solitary person, for whom social interactions are not intrinsically rewarding and for whom fewer connections are needed, can also give this appearance. A preference for sensing instead of interpreting can further add to this behavior, as can the opposite. Some people enjoy spending more time in their own world–I think we all enjoy it, to a degree.

I see Being In Your Own World as a logical consequence of being naturally solitary, of needing fewer connections, of preferring to either sense and not interpret, or to interpret and not sense. But it can also be the result of poor social skills, processing problems, or anxiety–in other words, it can be a negative as well as a positive experience. Sometimes it is a problem for the people who want to interact with the Autist and feel locked out. But it can also be a problem, a disability, for someone who feels locked inside.

Some Autistic people say that they have, essentially, a giant playground inside of their heads. I am one of them, though I expect that my playground is significantly different–a combination of thorny neurophilosophical pondering and wildly abandoned stimming. I enjoy it. I think most people do.

In short, aloofness in Autism can be caused by many other factors besides an active disinterest in people, although that certainly exists too. The question is why, and is that a bad thing?

Language Acquisition And Intelligence

I want to study language acquisition and development, in general and in disabled populations, from a psychological, philosophical, and anthropological perspective. Among other things. And James is the reason why.

You may have “met” Jame here before. I’ll re-describe him for you.

James. The stats. IQ assessed at 20, functioning at 23 month level of development? Nonverbal and has very little receptive communication; he can follow basic commands, when accompanied by a visual cue and kept concrete.

I could only work with him a little, because I always wear patterns, and he would become absorbed in them.

And when he did learn something we wanted him to learn, he couldn’t make exceptions. Couldn’t violate the pattern. For example: his mom usually sent him to school with a water bottle in his lunch bag. And when he was done with it, he’d learned to put it back and zip up the bag and put it away. He had FINALLY reached the stage where he could do this without cuing.

And then she sent him with a can of seltzer.

He took a sip.

Disliked it.

And put it back.

And we didn’t know whether to focus on the “No James, that is OPEN, see? The water will spill out!—which he would not understand, at least not that way–or the “He is initiating!” aspect of it. Because he doesn’t initiate. If a door is closed, he won’t open it. He won’t open the fridge if he’s hungry. He’ll go and stand by it, but he won’t open it. He’ll wet himself rather than open the bathroom door.

As Donna Williams would say, he does not interpret the world around him. He just senses it.

He is an expert on which toys are the best for different kids of stimming, which surfaces feel which ways, how different things taste, etc.

But that is not what we consider intelligence

We consider intelligence the ability to solve problems rapidly and use language fluently and function independently.

To interpret, not to sense.

And it would be good, I think, to “cure” his disability, his difficulty in extracting meaning from words. But would that endanger his special and unique way of looking at and interacting with the world? Is that okay? His brand of knowledge, of intelligence, works for him, brings him pleasure, optimizes his experience on earth. That’s more than mine does!

So who is superior now?

I want to study language acquisition and development, but I also want to study the acquisition and development of less interpretive ways of knowing. So perhaps linguistic anthropology is too narrow for me. Perhaps psychological anthropology is more accurate. I don’t know. I just know that James has presented an enigma.