9:36am December 14, 2011

The Reasons Behind the Chaos

Okay so now after sleeping what seems an arbitrary number of hours, I’ve woken up (having somehow pulled off my bipap mask) and can’t sleep yet again. But I can at least explain what happened earlier. Sort of, at least.

Note the motivation for these explanations are three: One to help me sort out events in my head. Two to help other people with similar ways of experiencing the world, in learning about themselves or how to explain themselves. (I can never repay the people who have done this for me, but I can do it for other people.) And three, to help other people (especially ones who know me) understand why I do things that to them range from confusing to completely incomprehensible. So much of the world thinks autistic people do things for no good reason at all (and that therefore if you train us out of our strategies for dealing with the world then this can only be a good thing) that I often feel like explaining what’s really behind seemingly irrational actions. But no autistic person should ever be forced or coerced into explaining things we can’t or don’t want to. That just becomes creepy and invasive.

Note what the motivations are not: I don’t do this so people will feel bad for me. Pity makes me squirm. I have a T-shirt saying “PISS ON PITY” in huge hot pink letters. I just want people to know where I’m coming from.

So here’s all the events that came together to bring out all the many and varied problems yesterday. I think it was yesterday anyway.

I just got a nerve block. My sense of time doesn’t exist so I can explain the events more or less but not calculate the time from then to now.

So I got a nerve block. Four actually. Two cervical, two on different parts of my trigeminal nerve. I get these four times a year. Basically they inject steroids very near some of my nerves. While for some reason I excel at lying still and not moving – they love me for this – it doesn’t mean it’s not incredibly stressful. If autism didn’t affect my outward responses to pain, and if I didn’t have decades of practice hiding what is and isn’t painful due to untreated pain so severe than until my early twenties I never saw the underside of six on the pain scale? I would be screaming my head off.

Anyway I get these blocks for two entirely different reasons. One is that I have trigeminal neuralgia. Not to be dramatic but… before they had treatments for it, it was nicknamed “the suicide disease”. And before they changed my meds to stronger anticonvulsants and gave me nerve blocks, I was beginning to understand the name. It’s hard to be rational about things like that when something can easily ratchet pain up to nine on that scale. Even with all the treatments, I feel like the right side of my face doesn’t belong to me anymore – it now belongs to territory called “pain”. And I’m saying this as someone with neuropathic pain literally everywhere else too. I used to cry when the short-acting numbing meds wore off if they blocked even part of that nerve for dental work, it felt like a gate had slammed down between me and the rest of the world. Because with severe enough pain you have to dissociate to some degree to survive.

The other nerve blocks are in an area where muscle spasms screw with the nerves coming out of the right side of the neck. It used to be that those spasms would then trigger more spasms all the way down my right arm. The first time the spasms in the neck area started it was bad enough they had to do a spinal tap to test for meningitis. With the nerve blocks life is much easier.

In both cases what the nerve blocks do is they inject steroids just near the nerves. After a few weeks they start calming down the pain signals coming from each nerve. I used to get a much more effective kind of block called radio frequency ablation. Where they pulsed some kind of signal to the nerves that somehow put parts of them to sleep for a long time. But then Medicare and Medicaid quit covering it, even after my pain doctor took a list of names including mine to court and explained the difference in quality of life this stuff makes. So now I get a less effective and less long term kind instead.

The fun part though? Until the nerve blocks kick in, the stuff they injected is in one big glob that presses on the nerve. Which for me means unrelenting increases in pain for days to weeks. And that’s after the stress of having people stick needles near my nerves while they bring in all these people to train them on how to do it. Yay teaching hospitals.

So the day of the nerve block… at first the stress put me into a shutdown-type sleep for a few hours after getting home.

Then right as the pain was really starting to kick off (as the temporary numbing drugs wore off), I had to do an online group chat to talk to the autism class of a professor I know. Group chat has a tendency to set off pain and/or migraines.

Then the pain kept me up all night.

I was supposed to attend the dentist the next day. That really couldn’t happen, especially given which nerves enervate the teeth.

Then I had a meeting with my case manager. After which all the stress and sleep deprivation slowed my normal 120+ wpm typing to somewhere in the 5-10 wpm range, with constant effort required to do it at all rather than curl up in a ball. It felt like every time I moved my finger even slightly, I oscillated between partial comprehension without movement and partial movement without comprehension. It felt like trying to balance on a knife blade – painful no matter which way I slipped. Then keep in mind typing is my only form of word based communication.

I’m part of a group of autistic people who have been paired with a group of professional autism researchers. Together, we do research that we feel actually matters to autistic people’s priorities, rather than the usual research which is done only to suit the priorities of autism researchers. And only a vanishingly small amount of autism researchers are autistic. And most autism research has virtually no quality control, such that I can find gaping holes even though I’m completely uneducated in this area.

So right now we are focusing on healthcare. The results of our study so far suggest that autistic people’s access to quality healthcare is worse than both nondisabled people and nonautistic disabled people. This is an issue that from personal experience, I know it can and does kill autistic people all the time. I’m very lucky to be alive. So I’ve thrown myself into this work 500% even though I frequently can’t do it since I can’t even hold down a part time job.

Right now we are at a crucial period where we are turning our data into a tool that will, we hope, be very useful to autistic people. It will ask autistic people questions about what will help our access to healthcare. Then it will generate personalized letters to the medical professionals in our lives about how to help us get quality healthcare. It won’t take care of the true bigots but we hope it will help the many doctors who are uninformed about autism or otherwise clueless about what we need.

And the day I wasn’t typing well? Was the day of a Skype meeting for the whole team, where we made exact decisions about what was going on the questionnaire. It’s really stressful at the best of times for a group of highly detail oriented people to have a discussion about what questions are important and what the exact wording should be. (Trust me: Adding or subtracting one word can cause a great deal of discussion.) This day was no exception. And I was participating at a snail’s crawl compared to everyone else. And remember what group chat does to pain even on good days.

In the middle of this meeting I got a knock at the door. Even under normal conditions I hate unscheduled knocking or telephone calls. It’s intrusive and knocking makes me have to get up and go to the door. My (autism related) movement disorder makes every transition – lying to sitting, sitting to standing, standing to wheelchair, wheelchair across lines on the floor and through a doorway to get to the front door – slow or difficult. I barely made it in time due to freezing up. If I didn’t have a sign on the door, the guy would have walked away.

Meanwhile I have stamina limited enough to keep me in bed 99% of the time, and my muscles rapidly weaken with exertion. Not to mention the brain-related exertion of driving a power chair without knocking over bookshelves or taking out oven doors with my feet (I’ve done both). Anyone who thinks people in powerchairs have it easy is mistaken – once your stamina is limited enough to need one, there is exertion involved just to successfully drive the thing.

So I got to the door. He gave me a big package. I carried it into the bedroom and opened it. It was full of little holiday presents. (I made my Amazon wish list full of mostly little cheap things this year so people wouldn’t feel obligated to strain their budgets.)

Meanwhile the Skype meeting was still happening on my iPod and making little chirping noises demanding my attention.

And I had lots of little presents on the foot of my bed.

And somehow I ended up curled up in a ball under the bed trying to hide from the presents.

I guess… with both autism and my cattish tendencies (don’t even ask where one starts and the other stops) I can have a reaction to new objects that most people see as strange.

Basically, home is my ultimate refuge. It’s where nearly everything can stay the same. Change isn’t just stressful to me. It’s taxing on a cognitive and even physical level. For instance, visually.

My visual system is really chaotic. Like in my eyes, it’s often just little pieces of stuff moving and jiggling around. In a familiar location, I have learned to make a map of the area that my brain can more or less count on. This greatly reduces the effort it takes to understand things. By understand I mean differentiating objects from each other, recognizing what they are, how to interact with them, etc. Stuff that for most people – even many autistic people if their expression of autism is different from mine – is so basic they don’t even recognize that they spend all their waking hours doing it so effortlessly, that they don’t know the skills exist and therefore in some people don’t exist.

Home is the closest to anywhere that I have relative visual stability. The less familiar a place gets, the more it is likely to change all visual input into a swirling chaotic liquid that I can’t understand. And that – ever since at 16 I became capable of motion sickness – can actually make me get violently ill if a place is unpredictable enough.

That’s just vision. Picture that to greater and lesser degrees in all senses. Then picture it in terms of the movement and cognitive skills necessary to successfully navigate an environment and function within it. For the most part, autistic people’s resistance to change(*) is not some kind of psychological rigidity. It isn’t something you just train us out of with ABA or cognitive behavioral therapy and we become happy ever after once we learn change won’t be the end of the world. We don’t like change any more than a blind person wants their belongings moved so they can’t find them anymore. For us, many kinds of change can affect us functionally on every possible level. Change enough and I will become functionally deafblind, unable to move, and possibly unable to have the most basic thoughts. When this all happens together at the most extreme level I call it “disappearing”, because it feels like I sort of wink out for awhile. You can’t train an autistic person out of this kind of limitation, you can only render an environment more accessible.

So. All this understood. Here I am in my home, struggling to function and get through a meeting. And suddenly my home is invaded by new, unfamiliar objects.

Don’t get me wrong. I love my family, I appreciate both the gifts and the thought behind them. But at that moment, all I could feel was terror. Both because I couldn’t handle the change easily, and because of an instinctive reaction of “this is my territory and these things are invaders”. I like the time to get familiar with new things, to gradually make them into parts of my environment. But this was an instant deluge.

So I had the rest of the meeting under the bed. My cat came and sniffed me, then left me alone. My staff person thought I was in the bathroom so he didn’t look for me for hours. Once he found out, he moved the presents out of my room and put them as far away as possible. And I was still incredibly wary but I managed to eat dinner and get back in bed.

And now… it’s like I’m obviously functioning better than earlier. But everything is still fragile, like it’s held together by pieces of string that could snap from barely any strain.

(*) Not all autistic people are resistant to change. I used to sometimes treat the sensory chaos as a playground of sorts. Didn’t mean I could easily function within it though. And I know others like me in this regard. This is why it’s a problem to treat things like resistance to change, social problems, and the like as central to autism for many if not most of us. Usually what’s truly central are sensory-perceptual differences, cognitive differences, and movement differences. Most of the so called core features of autism are more like peripheral results of these more central differences in experience of ourselves and the world.

This isn’t just an academic problem. It means that you can get two different autistic people with similar central attributes. And if they react to those attributes differently – one by resisting change, another by creating a sensory playground out of the distortions introduced by sensory-cognitive overload? At best one will be considered more autistic than the other. At worst one will be diagnosed with autism and the other won’t. Even though the most central aspects of autism are all but identical for the two of them.

I actually have a very close friend where our inner experiences, and even many of our more peripheral skill patterns, are uncannily similar. But we have a very small number of peripheral traits that are different. Unfortunately those few differences are among those the world sees as important in an autism diagnosis. As a result, most people who first meet us (and use these categories) at a glance consider me severe, autistic, and/or low functioning; and her mild, Asperger’s, and/or high functioning. I fear for her survival if she loses her boyfriend: She would find it incredibly difficult to get developmental disability services even though she has virtually the same (and definitely extreme) autism-related limitations on daily living skills that I do.

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