9:12pm October 7, 2013

School, burnout, autism, learning.

I was trying to explain to someone why going to school can be more traumatic and stressful for many autistic people than abuse. It’s weird when I try to explain something that seems obvious, to someone who I realize has no idea the depth of the problem.

This kind of thing goes for anyone. It doesn’t matter if you’re technically good at school or bad at school. That’s not the issue at all.

So, you have to sit in an environment that, no matter how orderly they try to make it, is chaos. There’s all these sounds, smells, sights you have to process. The processing happens consciously.

You have to pull meaning out of the sights around you in order to read, but also in order to recognize and respond to objects and people. You have to pull meaning out of spoken language. You have to pull meaning out of touch and all the senses that tell you what is happening in your body. And you have to juggle all of this at once.

You have to make enough order out of the chaos to avoid going into a meltdown or shutdown. You have to process sheer amounts of incoming information they become painful.

You have to do a lot of cognitive juggling. I was one of those kids who found it easier to relate to the world as a sensory place, than as a conceptual place. But at school every day I had to find ways of handling abstract concepts. “Pencil” is an abstract concept. I had to go beyond “pencil” to things like “long division”. All language is abstract. By the end of the day my head was swimming with symbols I could no longer understand and I would often come home to scream and cry, or curl up in my bedroom and shut down. It hurt like thousands of tiny strings pulled taut across my brain. My eyes stung. My head felt this sharp pain zipping through it.

Then there was the motor end. This involves two main sets of things: suppressing my natural ways of moving, and finding ways to move in the ways needed. This involved not just simple movements, but the complex combinations needed to do things like clean my desk, which I was not capable of no matter how long I stayed after class. Being “disorganized” was an early sign of a deep, severe problem with executing physical actions. Movement is not just coordination, it is a combination of starting, stopping, executing, combining, and switching, that any trouble with any of those things throws a wrench in the ability to do complicated physical actions. In my case, I had a big split between being able to do something “on command out of nowhere”, and being able to do something in reaction to an object or event. So organizing my belongings was an impossible struggle (I became known for carrying all of my belongings around in a series of huge bags), but typing, in reaction to a keyboard, became increasingly easy once I got the hang of it. That split has gotten wider and wider with time.

And all these things had to be combined like a juggling act from hell.

All day.

Every day.

To give the slightest idea what it’s like just to suppress something like stimming, try controlling your blinking and breathing. So that each one happens on a single, specific moment. Blink every five seconds, breathe in and out every ten. Don’t vary this no matter what you are doing: Walking, eating, resting, jogging, having sex. For motivation, remember that the moment you vary your pattern in the slightest, everyone around you will notice. They will ask intrusive questions, accuse you of not paying attention or if seeking negative attention, call you names, accuse you of being on drugs, and maybe even slap or restrain you. Every time.

It will get so that you will seek out as many opportunities as possible to be alone and regain your natural rhythm.

But it’s not just about it being a difficult thing to do. Those actions serve a purpose. They may help you understand your environment, regulate sensory overload and pain, connect with your body, think properly, let off steam, have fun, and function in every possible way. Yet they’re universally described by the experts in terms of their social impact: they look weird, they make people dislike you, they are dysfunctional and nonfunctional. But all of those things are false. Even when you don’t know the precise reason, your body generally has a really good reason to be doing these things or it wouldn’t do it.

I still remember my puzzlement when the school principal pulled me out of an assembly in third grade for repetitively clapping my hands over my ears. I didn’t even realize I was doing it, but it organized the sound of the orchestra into bite sized, comprehensible units I could handle. I was stunned and felt horribly when she pulled me out. She only did that to bad kids. I wasn’t being bad. I wasn’t even doing anything. I almost started crying. But I learned that stimming is bad.

Crying was another thing that set me apart. All I can say is I cried wrong. Other girls cried for sympathy, and got it every time, even if they were bullies. Tears rolled demurely down their cheeks. When I cried it was loud and messy and uncontrollable. And it only got me in trouble. Nobody has sympathy when you cry unless you’re cute. So I tried hard not to buy the strain of doing all this meant that I cried several times a day just from the stress alone combined with some incident that set it off. Sometimes there was screaming too. Sometimes I could hold it in until I got home, but if I was unlucky it happened at school where even the teachers called me an oversensitive baby.

Stimming was something that I did not understand why I had to do. But I had to. There was no choice. Sometimes I could postpone it until I s alone. But you can’t just totally erase the way your body moves. It slipped out in public at least sometimes. And that got worse with time, except the one year I went above and beyond and almost made myself perfect (sixth grade). I learned to just tolerate huge amounts of pain, but it only lasted one year, and I still had my escapes into cold, quiet bathroom stalls and elaborate fantasy worlds to keep me going.

There often seem to me to be two kinds of learners among autistic people although it’s a huge oversimplification.

Some build on what they learn. With every new skill they climb another stair step. They can stand steady on that stair step as they go on, up and up, to the next skill.

Then there are those who don’t do that. We may still build on what we learn. But every time we use the skills we have to start st the bottom of the stairs.

This has nothing to do with actual level of the persons highest skills. Some of the second type may climb higher than the first. Some of the first may stop on a certain stair step and go no higher.

But it’s the second kind who have gradually more trouble as school goes on. Because we are having to start, every time, from the bottom. Our skills from day to day are wildly uneven. One day we do something perfectly at an advanced level. The next we can do nothing at all. We may learn something once, only to learn it over, and over, and over again. It may not stick in our brain. And we may become so tired climbing stairs that our legs give out and we crash to the bottom, to the puzzlement of everyone except possibly ourselves. We usually felt our legs weakening even if nobody else saw the slightest sign.

People don’t see what is. They see what appears. They don’t see what we do to get to a skill. They only see the skill. They assume that the inner processes are the same for everyone. They don’t see that we are climbing a stairway, or a ladder, or a cliff, every time we use language. So they get puzzled on the days when we are too tired to climb and the skill that was there seems to have vanished. Sometimes we can climb again the next day. Sometimes some ladders become closed to us for good… with rare exceptions.

We are the ones most likely to crash and burn out. Whether it’s in elementary school, high school, college, or adulthood. Most of us, no matter how hard we work out, can’t climb the staircase forever.

Nonautistic people have few reference points for this kind of experience. For them, it takes severe physical or emotional problems to cause such losses. Usually they imagine that there’s some emotional block or trauma or stress causing us to stop being able to climb so high.

If it were physical stairs, they might (MIGHT) understand that eventually you can tear a ligament and be out of the running forever.

But they usually have no reference point for cognitive stairs. For strain on the brain muscle rather then the physical or emotional ones. So they ignore it, even though autistic people’s problems are almost always a complex interplay of sensory, cognitive, and motor. And it’s the sensory-cognitive-motor juggling act that collapses under the strain. Not necessarily – not even usually – an emotional one. Autistic people go through years of unnecessary therapy over these things when what we need is usually outside support to enable us to do everything we can still do, and help us where we can’t.

This becomes obvious with a specific pattern. If you give me the support I need with daily living tasks and motor planning tasks that I can’t do myself… the more support you give, the more things I’m capable of doing. Drop the support and I become virtually nonfunctional, unable to move, walk, think, sitting in my own feces. Give me more support and I become more and more independent. This pattern is impossible unless the problem is that my mind can only do 3 things and I’m asked to do 100. Pick up the other 97 and I can do 3 very well indeed.

When young we are expected to do 1 thing. Then older, 2, 3, 4, 100. When you start from the bottom of the stairs, you’ll never be able to do the number required. Eventually you’ll need others to pick up what you can’t do, and you become MORE capable. People with other kinds of problems become less capable when helped. We become more.