Saturday, August 31, 2013

In this activity, in this place, I am not disabled-cross post from Radical Neurodivergence Speaking

I'm going to get a bit social model on you folks today.

I used to do gymnastics, and I dance. I participate in 4 kinds of dance and am therefore dancing 5 days a week. This isn't something I did when I was young, I'm not particularly musical, so what draws me to it?

This is something I've had to think about a lot with the access issues and intentionally harmful lying about access of the Portland swing dance/lindy hop community in particular. And, not only that, but sometimes dancing hurts. Belly dance class makes my old gymnast knees hurt. I've got bruises in new, exciting places from modern. Ballet makes me hurt everywhere. And if my back, knee, or ankle doesn't already hurt come Saturday night? Well, that's what swing dance is for, right? But I cannot give it up.

Part of that may be this:

When I am dancing, I am not disabled.

I am still Autistic when I am dancing, possibly at my most Autistic-sometimes I am a being of pure joy and sensation while I dance-this is what gymnastics did for me, & that is what I am trying to recapture, I think. I still have epilepsy and my other various cooties. Not a single thing within me changed. My neurology is the same. My physicality is the same. I am the same.

All that changed is my environment, and the expectations it has for me. The expectation is that I can move with the music in a specific way. I can move with the music in those specific ways, and I can do it at an average or better proficiency. When the language is movement, when the social cues are the leading and following of the whole body rather than of subtleties, I am on even footing. I may not exactly shine, but I am also not struggling, not having to run everything through translators and emulators.

In the environment of pure movement, I am not Other. And I love and accept and embrace my Autistic self with my whole heart and soul, but it is restful to be Same for a couple hours. It is restful to have a place where things are easy, where I am seen as equal, as like, as same without fighting for it.

Because in that place with the mirrors and the hardwood floors, I am not disabled. I am just another dancer.

Saturday, August 24, 2013

Shoes, Instruments of Evil-Guest post from Kiley Quinn

Kiley Quinn is an autistic adult in an all autistic household. She told Neurodivergent K that she lacks awesomeness, but K disagrees.

I do not like shoes. I find it baffling when I enter a home and see a small mountain of sandals, boots, heels, and athletic cross trainers. After all, most people I’ve surveyed have two feet or fewer and don’t possess the ability to wear multiple pairs at a time. Upon receiving a pair of shoes as a gift, I have been known to cry, explain at length what is wrong with them, and then go into a full meltdown before hiding the offending objects. I don’t “do” surprises, am not a big fan of change, and the sensory challenges of a bad pair of shoes are unbearable. I realize that this is the behavior of a small child, but well, I am like your child. And I’m a grown up sized Mommy in (roughly) size tens.

If the shoe is poorly padded or has a thin sole, I can feel every variant in the concrete surface of the sidewalk like needles in my foot. Then I have to wonder if there’s enough room in the shoe to allow for adding thick pads or if my toes will be crushed by that modification. If the back is poorly padded, I will have blisters within one wearing. Maybe you wouldn’t get blisters, but then again, you probably walk the “right” way.

If my foot slides from side to side within the shoe, my dyspraxic body is convinced that I’m going to fall, even if the problem is marginal. If my foot slides forward, I probably will fall. I’m a person who broke her foot simply walking up the stairs, after all. (I possess special non-marketable talents.)

The shoe has to be constructed in such a way to allow bending for toe walking and to tolerate the increased pressure without immediately splitting. Even if they don’t last, they feel better broken in. We tend to wear shoes long past their expiration date. I have seen more than one autistic adult with shoes duct taped together after the soles have separated from the tops. I’m married to one. An adult, not a shoe covered in duct tape.

My kids usually don’t need to tape their shoes because their feet grow so fast. I admit to trying super glue once. I get my girls one pair of athletic shoes each. I can tell by sticking my hand in to feel the padding (sometimes followed by waving them around and making them talk in a southern accent) if they’ll be just right, and we tweak the size from there. Assuming that the store carries a generous variety of sizes, shoe shopping only takes about ten minutes. Then there was that one time they wanted clogs, and I opted to tell them that the store ran out of shoes. That saved lots of time.

Somehow over the years I have accumulated more than one pair of shoes, but I go to the same store every couple of years to buy the same kind when the previous falls apart. If the shoemaker changed the style, I consider it an early sign of the apocalypse.
In summary, a poorly fitted pair of shoes is a torture device equivalent to the iron maiden or the modern bra-- but that’s a story for another time.

Wednesday, August 21, 2013


Autisticook is a 36 year old woman from the Netherlands who works in IT. In her spare time, she loves reading, doing renovations on her home, and playing with her cat. She objects to being called crazy cat lady but doesn't mind being called a nerd. This article was originally published at Autisticook.

sad woman sitting alone in a empty room - black and white

I want to test a theory. The theory of shame going away when it’s out in the open.

I seem to have this thing. Which could or might possibly be related to decreased pain sensitivity. Or maybe executive function.

I don’t feel my bladder getting full. Usually the first signal that really gets me to pay attention is “bladder completely full cannot hold it need to find toilet within next 30 seconds!” Mad scramble for toilet ensues.

That or peeing myself.

I’m 36 years old. I’m a pretty successful career woman (I can still bluff my way around the gaps in my resume). I have bought a house on my own (mortgaged of course, but still). I have a small but close circle of friends. I’m close with my family. I’m highly verbal. If I wanted, I could easily be seen as a shiny Aspie.

And the last time I peed myself in public was 6 weeks ago. And I don’t mean a few dribbles. I don’t mean “bit of incontinence, here’s some Depends”. I mean not being able to stop until my bladder is empty. Thank god this time the train platform was fairly dark and I was wearing a skirt so only my shoes got soaked. Made a nice squishy sound when I walked away from the puddle in the hopes that nobody would see.

Have I forgiven myself for not being able to feel my bladder until it’s bursting? Oh, years and years ago. It’s just a thing that happens. I can’t do anything about it except frequent toilet breaks even when I don’t feel like I have to go, and sometimes I simply forget to do that. It’s part of being me.

Do I still feel absolutely mortified when I pee myself in public? Does telling this story make me cringe? Did anyone here reading that story feel embarrassment on my behalf? Or even disgust?… Yeah, thought so.

But I’m glad you listened.

Saturday, August 17, 2013

What is Independence Anyway?

This is a contribution from Amy Sequenzia, who blogs with both Autism Women's Network and Ollibean. She is an Autistic activist, writer, and poet.

One concern every parent has is how to make sure their children grow up to become independent adults.

Parents of autistic children seem to worry too much about the goal of “being independent”, as if this concept were not a complex one.

What is independence anyway?
Is anyone truly independent?

The answer to the second question is: no.

Every human being depends on at least a few others, from general things like the availability of food for purchase, to some service requiring a certain type of expertise, to financial support through a job or costumer (in case of self-employed people), to emotional support.

Some parents of autistic people worry that their children will never be able to cook a meal, shower or live independently. Their (erroneous) conclusion is based on the perception of the “severity” of their children’s autism.

First, some autistics (the “not-severe”) who can hold a job, who are married and with children, for example, have a very hard time remembering when to shower and when to eat.

But I am in the group of autistics who, supposedly, would never be independent.

Yet, independent I am.

Because independence does not mean living by myself or doing all things without help. Independence is about self-determination, about setting my own goals, about knowing what is important to me.

I chose to live with friends and we worked out an arrangement that works for all of us. They are my roommates, not my caregivers. I accept the difficult aspects of my life and welcome their help. Then I can enjoy my autistic self and work on my life’s goals.

Communication is important and my parents made sure I have access to a method of communication non-autistics can understand. Then they let me grow up. As an adult, I make my decisions and I fight for more autonomy. I am learning responsibility. I have friends.

This is independence, even though I still can’t eat or shower by myself.

Wednesday, August 14, 2013

Beyond "The Talk"

When it came to puberty, my parents did what many parents in the seventies did: they gave me a book about puberty written especially for girls. It was a slim cranberry hardback with an ambiguous title like "Everything is Changing."

I was a voracious reader, so I would curl up in my beanbag and scour the pages for clues to the mysterious changes that were on the horizon. I think I had many of the same fears, anxieties and curiosities about puberty as my friends had. Certainly my body went through the same changes that other girls experienced. However, I think there are some areas where girls on the spectrum would benefit from additional information or guidance. That's what I'm going to focus on in this post.

Many of the issues I want to touch on also apply to boys. I'm specifically addressing the issue of puberty in girls because I was once a girl and I raised a daughter. Girls are my wheelhouse. If you're looking for information about boys, I hope you can adapt some of the ideas below but, honestly, boys are a mystery to me.

In addition to talking to your autistic daughter about all of the things parents normally cover when talking about puberty, consider discussing the following when you feel the timing and circumstances are right:

1. Hygiene

  • Talk about where body odor comes from and why, be sure to mention that sometimes we can't detect our own body odor but others can
  • Emphasize the importance of daily showers, tooth brushing, mouthwash, deodorant and changes of clothes in preventing body odor

You may have to repeat hygiene instructions or reminders many times. You may need to come up with a visual or text schedule to hang in the bathroom. There are still days when I need a reminder to do basic self-care tasks. This isn't "one and done" instruction for many autistic individuals.

If you notice that the stick of deodorant is lasting far too long or there aren't enough pairs of underwear showing up in the laundry to account for daily changes, you may need to go on a fact finding mission. If you ask "why aren't you wearing deodorant?" there's a good chance you'll get the tried and true aspie standard: "I don't know."

Maybe the deodorant smells too strongly or feels sticky. Maybe she has two pairs of underwear that are comfortable and ten that aren't. A better approach then "why aren't you ____?" is "how did you like that deodorant we picked out?" Maybe she hates it and doesn't know how to tell you. This stuff can be embarrassing when it's so new and confusing.

2. Social skills (use your judgment to decide on age appropriateness of the following)

  • Talk about appropriate/inappropriate ways that boys and girls express interest in each other. Give specific age appropriate verbal and nonverbal examples.
  • Talk about how to say no and what to do if a boy doesn't take "no" seriously.
  • Explain what flirting is. Give age appropriate examples of verbal and nonverbal flirting cues that boys and girls use.
  • Explain the concept of personal space/boundaries, including how a person signals that they don't want another person to come closer or to touch them.
  • Talk about types of touch, specifically the differences between how friends touch each other (on the arm, on the shoulder, quick platonic hugs) and how boyfriends/girlfriends touch each other (holding hands, on the face, longer hugs).

If you're already working on social skills with your daughter, boy/girl interaction can be presented as new age appropriate skills to be learned like any others. Be specific. Use lots of examples, perhaps drawing on movies, TV shows or some time spent people watching at the mall food court. The wider variety of examples you give her, the better. Remember, autism makes it hard to generalize from one situation to another.

Don't assume that autistic girls will extrapolate from middle school social skills to high school skills the way typical girls often do. Continue to update your daughter's knowledge bank as she gets older. How boys and girls express interest in each other is appropriate for a young teen. An older teen needs specific knowledge about what a romantic advance looks like and how to verbally/nonverbally signal acceptance or rejection in an appropriate way. She also needs to know when she's giving off "I'm interested" signals, especially if they're unintentional.

This may not seem like rocket science to a typical female. Most women instinctively understand the verbal and nonverbal language of flirting, but for someone who struggles with reading body language, it can be mind boggling. I'm 44, fairly intelligent, in a long-term relationship . . . and I still have only the vaguest idea of what flirting looks like in action.

3. Sensory issues

  • Include your preteen or teen in choices of new hygiene products like deodorant, pads or tampons. Sensitivity to smell can make perfumed items (yes, even tampons) hard to tolerate.
  • Tactile sensitivities may impact your daughter's choices and comfort level with clothing, especially a newly introduced bra. Don't be surprised if she seems to cling to her more comfortable "childish" clothing. Help her find age-appropriate clothing that's comfortable.
  • Be alert to the role hypo- or hyposensitivity to pain can play in menstruation. I used to get cramps so bad that my legs would feel numb and often that was the complaint I voiced. I'm sure my "numb legs" made little sense to the school nurse as a symptom of menstruation.

Depending on your daughter's interests, personality and sensory sensitivities, she may be interested in make-up, hairstyles, clothing and other things popular with girls her age, or she may not. She might become interested in those things at a later age than her peers. She might want to try some of them out, but only if she can do while not aggravating her sensory sensitivities.

Honestly, there's no typical autistic girl when it comes to personal grooming preferences. You might have a daughter who can barely be bothered to run a brush through her hair or you might have a daughter with a special interest in eyeliner that threatens to break the bank.

4. Hormones!

I've saved this one for last because it's a bit scary. The hormonal changes of puberty and adolescence are hard on typical girls. For girls on the spectrum, they can seriously throw things out whack. Before puberty, I'd never had a full-on meltdown. Hormones turned me into a shouting, door-slamming, crying mess. And the worst part was, most of the time I had no idea why. It all felt completely irrational.

Be alert to changes in your daughter as she goes through puberty. This may be a time when other conditions like anxiety or mood disorders arise. You may see an increase in stimming or other self-comforting behavior. It may be when her need for alone time skyrockets or you feel like she's backsliding in social skills, emotional regulation or other areas that seemed stable.

It may also be anticlimactic. She may encounter the same issues as typical girls and you'll get to suffer through them like all the other moms.

If you see your daughter struggling with new issues, talk to her about them. She may be aware of an issue but not know how to approach it, she may be fine with handling it the way she is or the issue may not have even made it onto her radar yet. I'll assume you have strategies that work in this kind of situation and leave the details up to you.

5. Questions?

Not yours, your daughter's. Keep the lines of communication open and emphasize that your daughter can ask you about anything, no matter how silly, strange, uncomfortable or obvious it might seem. If she has difficulty raising questions verbally--and this can be true at times even of girls who are usually verbal--give her the option to share questions in writing and to have your answers in writing as well. That way she can come back as needed and reread them.


The tips here are by no means all-inclusive. They're simply the things that come to mind when I think about what would have been helpful for me as I matured.

If you're looking for more information about puberty, sexuality, and adolescent hygiene, Autism Help has extensive information, beginning with the basics of teaching about body parts and the difference between public/private activities. There are a nice set of visual aids you can download and use in talking with your child as well.


Cynthia Kim blogs at

Saturday, August 10, 2013

Preusming competence: Not just about what I *can* do

 This is a cross post from Radical Neurodivergence Speaking.

As a disabled person, I have experienced failure a lot in my time. I have experienced the kind of failure that can be turned into success by fine tuning the failure. I have experienced the failure that comes from being sabotaged by low expectations or unreasonable demands. And I have experienced the kind of failure that comes from just not being able to do what I am trying to do.

What does this have to do with presuming competence?

Well, the first part of presuming competence is presuming capacity. Presuming that the ability to learn and understand and do new things is there. This is good. I like this. Please, keep believing that I can do things, or at least should be able to give them a good honest try before doing them for me or moving on and putting it in the permanent failure pile. Assuming what you are asking of me is possible here in reality land (deciding to not have a seizure in face of triggers doesn't fall in this category, FYI. And is the inspiring events, plural, for this post), let me try it. I want to try it. I want to fine tune it. Probably.

So, presume I can learn. If I tell you I can do something, or may be able to do something but I need to try it first, run with that. Allow me to try. Help me fine tune if I'm close but not quite. Rephrase. Demonstrate. Whatever. If I think it's in my eventual capacities, and you support that, that is presuming competence and is good.

But. I have failed a lot in my day. There are things I just cannot do. It doesn't matter that I can speak usually or can do a backflip or follow complicated written down chemistry lab instructions or calculate gymnasts' trajectories preternaturally fast, I still cannot hold more than 2 auditory directions in my head on a good day. I still can't read a map in any useful fashion. Whether I can make food without setting it on fire is iffy. I cannot just block sounds out. I cannot sit still and think at the same time. I cannot always make decisions without substantial field narrowing. I cannot always write a thing on demand without significant scaffolding. Et cetera.

When I tell you I cannot do something, presume that I am competent to understand my own limitations. I am not being lazy. I am not manipulating others into doing things for me. I have legitimate support needs. I have workarounds for most of the things I listed above. Slow, ponderous, time and spoon consuming workarounds, but workarounds nonetheless. But the truth of the matter is there are things I cannot do and I know that I cannot do them.

Assume that when I tell you something is not in my skillset and never will be, that I know from experience, or am making an educated guess. If you want me to cross an unfamiliar city on transit using nothing but maps and paper timetables without getting lost? You are dreaming. That is not going to happen. Have I tried this in recent memory? No I have not. But I know:

-I cannot read a map in realtime
-I am significantly time agnosiac
-My ability to navigate places I know very well is pretty iffy, much less new places
-I know the above well enough to struggle deviating from any initial plan, even if the initial plan deviates from me.

So it isn't a stretch at all to say that this is a thing that is not going to happen. This is an educated statement based on my knowledge of my skills and skill holes.

If I say I cannot do something, I do not need to prove to you, and myself, yet again, that I cannot do it. To demand that I show you my inability is presuming incompetence: you are telling me that I am wrong about my inabilities, and my ability to know them, until you determine otherwise. This undermines both my own agency and the ideal of presuming ability. We all have inabilities. It's ok to have inabilities-unless, it seems, you are disabled. Acknowledging a difficulty is not the same as presuming global inability. It's part of seeing me as a whole, really real person. Really real people are allowed to not be able to do things.

Proving yet again that I cannot do something so that you can say you presumed competence, even when I told you something is not a thing I can do doesn't do wonders for me, either. The chances of me waking up one day with that set of skills in infinitesimally small. Forcing me through that particular failure above rather than meeting me somewhere or giving me detailed written directions for several options? That's anxiety attacks. That is an anxiety attack squared, because being late makes me panic, not knowing where I am makes me panic, and plan changes that I have no good way of dealing with? Those are near inevitable, and also make me panic! Putting me through that because maybe I magically obtained abilities heretoforth unprecidented? That's actually really mean. Don't do that. It sucks.

The ideal of presuming competence is lovely. I am all for it. But one of the skills we need to develop, and have acknowledged, is knowing where we struggle, where we fail again and again. Do not undermine this very important skill by telling us we are able to do everything but describe our own inabilities. That's not presuming competence. That's something else.

Wednesday, August 7, 2013

Wait, I'm Injured?!

I hear, sometimes, people talking about how scary it is when their kids don't know that they're injured because of their high pain tolerances. Been there, done that.

I have something off in the cartilage of my left knee, along with a small cyst, and it looks like I may have focally fractured it a couple months ago. Thankfully, it's not a tear. I have had it for a bit over two months. I didn't realize, because those are supposed to hurt. And, well, it didn't, mostly. I assumed that I had a minor sports injury that was most of the way better and that I just wanted to make sure it was going to stay fine during the year in China. But. It is apparently not minor. It's something that will recover with time and physical therapy, but it's not minor. This is right now. I am an adult, and I have had a major injury for two months without realizing it because my pain tolerance is too high.

I do this fairly regularly. There are three fractures I've had that I know of which never made it onto my medical records because of this kind of thing, and there are three others that may have happened (This current one is one of the maybe's.) One was a broken nose, I never made it to a doctor at all from it but there are people in my family who know what a broken nose looks like. That was my senior year of high school.

One was a focally fractured shin. That's a leg bone. I walked to school the next day. I walked at school the next day. I was walking around on a leg that had a broken bone in it. (Yes, I am sure that I broke it. There is still a dent in my shin, four years later. I assume it's permanent. No, I did not take any pain meds for it. Not even a Motrin.) I was sixteen. I got it passing out into a swimming pool at a swim meet, because I don't always know when I overextend myself. That's the only time I did so badly enough to lose consciousness, thankfully, but that could have been a lot worse than it was. (I came to in the pool and had already swum to the edge by the time most people realized anything had happened. The whole breaking my leg on the way down thing, even if it didn't manage to hurt enough to make me realize it was broken right away, probably woke me up.)

One was a broken foot. I went hiking the next day. I didn't get it checked out for a month. My host family never even knew I was hurt, at all. (I was staying with a host family in Shanghai at the time, and I was alone in Hangzhou when I broke the foot. Yes, I speak Chinese well enough to do doctors offices there.) There was some medical fail involved in this one not making it to my records- the doctor actually saw the point of the break on the image a month later, and said it wasn't a break because to look like that the injury would have to be about a month old... Yes, the doctor had been told the injury had been a month prior. I don't think that "This person walked around on a broken foot for a month" is a statement the doctor could handle. I was eighteen when I did that. I was a legal adult when I did that. (I was seventeen for the nose, and sixteen for the shin. Twenty for the knee issue, which is a thing that is going on right now.)

That's not to say there are no advantages to this. It's a pain at hospitals, where no one understands that this kind of pain tolerance is a thing, but it also means that when an 800-lb Old Spot pig attacked me I was able to get myself out of there, and I didn't miss a single day of school from it. It happened on a Tuesday where there was no school because of Rosh Hashonah, Wednesday was no school for the same reason, Thursday I was at school, and Friday I rode my bike to school.

I've had to learn other cues for a lot of things. I'll apparently start acting like I'm in pain a bit before I feel the pain, though it's not by much. I get goosebumps normally, though I tend not to feel cold until I'm close to hypothermia, and the really boring synesthia of some sounds having temperatures doesn't help. But even with the things I've picked up, I can miss broken bones because of my pain tolerance. I've had 3-6 broken bones in my life, and my pain tolerance is the reason that none of them are on my records. (It's also why we're not actually sure what the number is.)

Saturday, August 3, 2013

Because it Works - Guest Post by S.

I'm S. I'm a young adult with asperger's and anxiety and I blog at

Before I developed a near crippling sense of embarrassment and shame, I did a lot of spinning, hopping, rocking, and “dancing” of my fingers directly in front eyes for fun, out of boredom or excitement, or to keep myself calm. This, of course, was before I realized how  others perceived me when I did these things.
I was eight years old when I began to self harm. No, that is not entirely accurate. To rephrase, I was eight years old when I moved from mostly harmless methods of self harm to potentially deadly methods.  I don't think I was depressed. Not yet. I think I was more likely very overwhelmed and struggling to find any “acceptable” means of expressing how I was feeling. Being angry or sad were generally frowned upon in my various households. I was in third grade. I had a roof over my head, clothes on my back, and a myriad of toys in my closet and scattered about my room. What did I have to feel upset about?  So...I took up cutting. It seemed a logical answer to my problem.  Quiet, easily hidden and , usually, painless. In the beginning it was just...fascinating and a distraction from my thoughts.

And that is how it began.

I spent a rather awful fourth grade year with my grandparents (to be clear, said awfulness had nothing to do with them) enduring a class that hated my guts. I, at that point, was very very easy to “set off” so to speak. I was, for many years, a crier. Unfortunately. My peers knew exactly what to do to get me to completely fall apart in the middle of class. And to be honest, it took very little. They only had to move my things around a bit...”borrow” a pen or pencil. Graze the middle of my back while I was not looking. Small things, really. It was entertaining, I suppose. The “zenith” of their fun occurred one day when I completely flipped my shit and started throwing chairs. This allotted me a break from their "games" for about a week or so, before they completely forgot the incident. I didn't self harm that year. I mostly kept everything bottled up inside. The following summer, I moved back in with my mother and picked the habit up once more.

I used to,  I get these sensations in my body that are not quite painful, but are concurrently excruciating. It is difficult to explain with any degree of coherence. I have probably written about this before. Badly.

Ok, so imagine for a moment that in your head resides the constant high-pitched whine of a pneumatic drill. Now imagine that the drilling persists for hours at a time. It would be mildly annoying at first; nothing you couldn't handle. But the longer it carried on the more you would wish for it to just shut up for two God damned seconds. After a prolonged period you would be begging for the noise to stop.
Now imagine that you are supposed to go about your day as per usual while this is happening. That you have to go to school with all of its screaming children, loud bells, fire drills, chairs getting knocked over, metallic things clanging in the already far too noisy cafeteria...etc. All of this in the midst of the drilling. . Sometimes it gets better while you are doing something you enjoy (like band). Sometimes, though,  it gets worse(and band becomes your hell on earth). Sometimes you can't hear it at all, and that is a truly wonderful occasion,  but it always comes back.
Now imagine that while all of this is going on it feels like someone is rubbing their fingertips on your neck, arms, legs, and spine. Lightly. It makes you feel creepy all over and you are near constantly reprimanded for not sitting still. And your uniform is far too stiff. The collar of your shirt is choking you. It feels like there are tiny rocks in your shoes so you take them off every few minutes to search for the culprits and find none each time while the class protests at the non existent smell of your feet because they think it is funny to watch you become upset because “they don't smell bad! Really! They don't! If they did I would never take my shoes off! I'm not a sadist, you know!”.
And this is the year after you realized that you were the strange kid in class. And you notice the way your classmates stare when they think you are not looking. You can hear, quite well, the whispered remarks. And they yell at you for returning their stare, calling you weird. And annoying, you are definitely that. Every time you open your mouth you are greeted by laughter, blank stares, or anger. You are interested in all of the wrong things. You never know what to say. Teachers are apt to tell you that “Well, maybe if you weren't so...” or “If you didn't always...” or “If you would just...” [insert whatever here] “then maybe they would like you.” or “maybe they would want to play with you.” or “they wouldn't have to pick on you.”. Because the way they treat you is ultimately your fault, of course.

You have stomachaches because you are always so scared.  You have “stomachaches” because the prospect of going to school today is absolutely out of the question. You have migraines from the noise and bright lights. And speaking of those lights, they are fluorescent and the buzz buzz buzz all through class and it makes you feel crazy. You cover your ears and the teacher yells. You close your eyes, the teacher yells. Hum to your self? The teacher yells. Rock a bit? "Be still!"

Now, throughout all this mess you are expected to behave in a manner that is considered to be "normal". Riiiight. This is the point where I would come home and bludgeon myself with an encyclopedia, punch the walls, punch myself...whatever. This is not considered acceptable behavior, just to be clear. Too noisy and obviously, visibly, weird.

That is also the point I was at when my self injury crossed the threshold of weird to pretty serious stuff. It was made very clear that my current methods of coping were not at all okay. They were an embarrassment to the family and, clearly, merely a ploy for attention. I didn't want to be an embarrassment and I didn't want anyone to think that I enjoyed attention of any kind, lest they give it to me. Attention would be more a punishment than anything for someone with my level of social anxiety. So...I just stopped. Everything. I stopped talking about how I felt. I stopped talking in school unless absolutely necessary. I stopped self harming in any way that could seen, or heard, and determined to be a source of embarrassment. I locked myself in my room, or in bathrooms, or any place that I could be hidden, and internalized everything.

Around this time, my anxiety increased dramatically. I would shake in the car on the way to school and beg to be taken back home. When I did make it to school, I felt agitated and  sick to my stomach. My heart would pound and I'd hyperventilate and that would eventually lead to a full blown panic attack and then I would have to find somewhere to hide or walk home and stay outside until it was a reasonable time to be home.

My mom, very briefly, took me to a shrink when I finally screwed up and what I had been doing to myself became obvious to her. The shrink told me that she didn't know what was wrong with me, though something was clearly very wrong, and that she could not help me. The school counselor listened but did not really listen to, or understand,  what I said.  I found it very difficult to talk to people and she was no exception. She used the "tough love" approach without knowing exactly what I was trying to say. A good lady, but completely oblivious to those of us that do not communicate in a typical fashion.

Most of the time it felt like I was going to dissolve into hysterics when I tried to explain things. Cry and never stop...scream until I blacked out. So, I would generally give up and walk away. Smile, nod, agree that yes, I did feel better now, thanks.

Somewhere, in the back of my mind I was sure that I was crazy and that there was nothing that could be done to fix it. On the other hand, people had , for years, drilled it into my head that I was doing it all on purpose and if I REALLY wanted to be like everyone else I would be. So maybe that too. Crazy because, subconsciously, I wanted to be.

I still hit myself and punched walls in an attempt to release some of tension. I just made sure I was home alone. And I felt like a complete moron when I did it. I needed something other than the sadness and the anxiety and the feelings I couldn't, and still can't, even accurately categorize to focus on. Or I did it as punishment for freaking out and making myself look like a freak.  Or to feel override the feelings swirling around in my head and crashing into the walls. I did it because it seemed to be the only thing I could get away with. I did it because it worked. However briefly, it still WORKED.

Self injury works,  amazingly enough.

But not forever...not even for long. Just long enough to catch my breath and gather my thoughts. Long enough for the lunch bell to ring so that I can hide in the counselor's office and read a book or draw a picture. Long enough to finish that test...or at least bubble in some random letters and ask to be excused while I go get a drink of water.

But that brief, quiet, socially acceptable relief did not come without a price. I felt like a failure. None of my peers, as far as I knew,  were cutting themselves to bits over a bad day. And I hid all of the scars because people ask questions and I couldn't exactly blame the nonexistent cat forever. I was miserable because, even though I felt kind of proud that I had found a quiet and private way to cope, I still knew that I had merely lost control in an attempt to gain it back.

Umm...I don't really know where I am going with this. I would like to say that I magically got better one day  and am now a happy, well-adjusted member of society. I would like to say that I “out grew” my depression and stopped internalizing everything and developed a host of excellent coping skills. The most that I can say is that I usually opt for a dark room and loud music. That the self harm, while still fairly prevalent, is not quite as severe as it once was. That I am slowly accepting that I am a human being with feelings, that these feelings are not always going to be “happy”, and that this is okay.

Friday, August 2, 2013

Socio-Sensory Distress Is Harsh, But Navigable

Trigger warning: Graphic descriptions of anxiety and pain and wishing to be not-me.
Disclaimer: I speak for myself, but publicly, in case others (maybe kids) may relate.

Up all night thinking about these things, unable to sleep guts twisting as if moved by the spokes of a dullish grappling hook churning slowly round, roiling the inevitable acidic bile I could not determine whether or not would come up if I tried to vomit. It’s not that easy; it’s not that easy to tell: it’s not up to me. However familiar, the nausea has never accepted me as sovereign.

Being sociable has never really been a matter of just do it, get over it, hoist your bootstraps, yar yar yar. Some people think it is, and I can tell that this is what they think (it is very easy to tell when they proclaim such aphorisms) and I early on bought it in my life, and it made me want to wake up not-me, and give myself more grief than ever they could. I knew I was weak, even craven. I didn’t ever need them to tell me so often, in so many ways, so many clichés.

Here is what a social event may be like: there is nowhere to go. And everywhere noise, and smells, noise, visual and audio noise, noise for all the senses, noise and information. And the sense data are far too many, and there are also emotional data that come flying at you from so many directions, and the atmosphere so thick you cannot breathe, even if you had been otherwise able to have a slim chance at breathing despite the light fixtures, invariably tuned to some kind of painful. And all the people are wanting, they need and want from you all the things in the wide array, and you can feel it, and what they say is not the same as what they show.  There is no comfort anchor anywhere, and no dictionary of them

All the people are talking at the same time and there are secret reasons to know to whom you are supposed to be listening more, and what you are allowed to say. The secret was not given to you, and you do not know where to find it. Meanwhile the couple to whom you were just introduced by an alpha person and (at least this time you know one thing) this means your attention is required, these people just as one example are telling you how much they love each other and are happy to meet you, while flinging emo-data of hostility toward you and belligerence to one another, hard. Your teeth hurt. You must listen because you know this rule, but all the people in this world are also simultaneously talking, very loudly, and you can only really pick up every third inconsistent lie-sounding word, and your heart bleeds for them, and there is nothing you can do, because which is stronger, your bleeding heart or your drastic incapacity? Will your heart bleed out?

You concentrate, with all you have, and your head throbs, and the knives of light stab your eye through into your brain because the dreaded cluster headache is coming which may knock you out. (It never does completely. It is too cruel for that.) You can barely hear and you try to control your face the friendly way, desperate to show your caring in a composition in which it will be correctly read. You hear someone you respect say this: “You’re not present; you’re not with us.” Shades of “your own little world,” and though you hurt to hear it, in all honesty you’d give anything, anything, for your alleged stereotypical own little world right now but you have risked it all to be in this world, this world of pain and fear and angst and constant assault and never knowing what to do or if it is right because you love the people and you want to be…

I’ll say it. I will. I will say it: You want to be a person.

And now I shall just easily bootstrap over my just do it and finish writing this.

These things are always worse for me beforehand, in the imagining, especially when someone has been sort of mean or unwelcoming in the lead-up and I have let it spin out of control inside my head. In real life, I have ways of working with it, and I will write some of them here, because in real life, I get through, and often come out the other end very, very tired, sure, but saying it was fun.

Because of this: usually it was the case that I had fun.  I do love other people and in reality believe I am a person.

I am, you know, a person.

A while ago some things happened. One of which was this. I found out it hurts people’s feelings when you never come to their parties. So I wanted to find a workaround. Then soon thereafter I found out that in order to have a professional life you have to do certain kinds of social events whether people’s feelings get hurt or not, because that is the way of the world. So I needed to find several workarounds.

One of the first things I do when I can is case the joint. I try to find the lay of the land. This gives me a modicum of physical comfort. Also this leads into the second strategy I have which is one of my most potent go-to items: giving myself secret jobs. For example, inside my head, I may be The One Who Is Secretly In Charge Of Replenishing Drinks. Or The One Who Knows Where The All The People Are, In Case Anyone Should Ask.  This is very diverting, and gives me a sense of belonging. Also, it causes me to act in ways that transmit my role to those around me, thereby making their actions toward me more predictable and easy to read. Ahhh… comfort.

My mother came up with a good overall strategy once I started needing a more advanced go-to, one for situations and events in which I had not had a chance to case the joint and invent a role. It goes like this, and it has worked well for me. My role in the event is to scan the environment for someone(s) who appears to feel even more uncomfortable or out of place than I feel inside, and show them welcome and a good time.  This is more advanced than the ones above because it does take a certain amount of practice and core confidence to pull this off, for example, I cannot do it while in mid-meltdown.  Sometimes when I am particularly ill at ease in a given situation I will start out being The Drink Replenisher and that will relax me enough to allow me to become The Noticing Welcomer.

What is great about it when I am able to relax enough to become the person who can see that there are others who are even more crushed and stabbed and roiling in the anxiety blender than I am, is that not only am I distracted from the overreactions of my own body, but I am useful, and that makes my body calm down, because it is a good job. And my calm body can bring calm to the bodies of others because that is how things work in the world. I know I can make things less difficult because I know that I do understand what it is, and I will never say oh, bootstraps chin up just do it yar yar. I will say I see you, and I welcome you.

And in so doing, I welcome a person, and bestow upon myself the right to offer welcome.

I have recognized the personhood of both of us.

Later, I will be very, very tired, but I may have made a new friend, and I will be happy.

These things take practice, and the willingness to risk, but they have been worth it in my life.

Thank you for listening,