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7:00am July 2, 2014
Anonymous asked: I've just found out about catatonia, and I think I might be affected in some ways. I find it very difficult to initiate movements sometimes, and I also get frequent freezes, Like, I'll go downstairs every day, and then just stop for around a minute when I get near the door. When I freeze, I tend to lose all memory of what I was doing and how I got there. I often won't leave bed to eat, sometimes for hours because it just feels so difficult, how does this relate to how you're effected?

There are some books that might be of interest to you.

There’s two books, that are sort of two versions of the same book, but they’re so different from each other it can be worth your while to own both:

http://www.amazon.com/Movement-Differences-Diversity-Autism-Mental-Retardation/dp/1886928002

http://www.amazon.com/Autism-Sensory-Movement-Differences-Martha-Leary/dp/0966037685/

The first one is a shorter, older version that’s easier to get through in a short amount of time.  The second one is newer and incorporates a lot of new information, but is also longer.  Both are by the same authors, and worth your while.  They don’t deal so much with autistic catatonia, as they deal with catatonia in autism.  (Autistic catatonia is a specific movement disorder where autistic people’s catatonic traits get worse over time.  Catatonia in autism just means that most autistic people have some traits of catatonia, whether mild or severe, whether they get worse or not.)

Lorna Wing and Amitta Shah wrote the first really basic, clear article on autistic catatonia here:

http://bjp.rcpsych.org/content/176/4/357.long

It’s the above article that resulted in my diagnosis with autism-related catatonia (it wasn’t yet called “autistic catatonia” formally at that time).  My psychiatrist had been observing these traits in me for six years before that paper came out, and when the paper came out he knew what he was looking at.  Prior to Lorna Wing’s paper, all there were, were a couple of badly done case studies that nobody much actually read.

There are now a number of articles out there on autistic catatonia, many of which you have to have access to specific journals to read.  One journal did an entire special issue on them.  Some of them are excellent, others are not so good.  There’s one author, Dirk Dhoscche, who seems to get involved with studying any condition that he believes will give him a rationale to bring back electroshock therapy (as in, the kind where they shock your brain, not skin shock) and since catatonia and severe depression are the two conditions that people still mostly are willing to give ECT for, he studies those.  I don’t trust him or his motives for studying autistic catatonia, especially after a horrible conversation between him, me, and another autistic person who was diagnosed with autistic catatonia.  So be careful of anything you read by him – he mostly writes things with the ulterior motive of bringing ECT back to a wider number of people, especially involuntary ECT which is currently illegal, for good reason, in many countries.  I’ve read through everything on autistic catatonia, including his stuff, because there is real information buried in there, just be careful when you do.  And don’t try to engage with him or you’ll get Not Like My Childed (Not Like My Patients?) no matter how severe symptoms you’ve had.

Here’s an excerpt from one of the books I mentioned, dealing with catatonic traits:

http://youneedacat.tumblr.com/post/87524936250/the-possible-connection-between-symptoms-of

Anyway, reading material aside…

When I freeze, I’m mostly quite aware of my surroundings.  In fact, almost too aware.  I feel it when people do things to me (people have done everything from jump up and down on me to sexually assault me, assuming that I wouldn’t remember or be able to feel it).  I hear when people talk to me.  I feel the pain when my butt is digging into the surface I’m sitting on and I can’t adjust my position even slightly.  I just can’t seem to get connected to my body.  Sometimes it helps me if other people touch parts of my body to help me locate them and get moving again.  My cat is better at this than any human I have ever tried to train, and when she does it, it surprises people because she’s very businesslike and just walks all over me nudging and nipping me in different spots over and over until I start moving better.

But I’ve heard of people having cognitive freezing along with motor freezing, both in this and in Parkinson’s, where their mind just sort of shuts off along with their body.

I have a lot of trouble crossing certain boundary lines.  Those can be purely cognitive boundaries – one state to another in my head. It can be the boundary between my bed and getting up.  It can be a line on the floor.

When I had trouble getting from my toilet to my wheelchair, my friend and I came up with a plan to trick me.  She holds a coathanger out in front of me just out of reach and says “grab the coathanger”, so I grab it, and in doing so I stand up.  That breaks the stuckness, and I’m able to complete the transfer from there.

I have trouble initiating just about anything, unless there is a cue for me.  Like using the computer, the keyboard is a physical cue so it’s usually easy for me to get onto the computer, and hard for me to get off of it.  The keyboard also affords me one of a few places where my hands act the way they did before I got this movement disorder, so I can type quite fast unless I’m so severely affected that day that even familiar hand movements are affected.

My hands are fortunately spared a lot of this.  I can also crochet really well now that I got the hang of it, and I can play some musical instruments.  Like not well enough to do it professionally, but good enough for fun.  Those things all have in common that an object helps me “borrow will” from it so that I can continue doing what needs to be done with my hands.

I spend a lot of my day not doing much.  Not because I don’t want to do much.  Not because I couldn’t do much, physically, if my body were able, which lately it is.  But because the inertia of autistic catatonia keeps me from initiating new things unless someone else helps me initiate.  I frequently ask for help from support staff, in initiating, continuing, or combining a difficult series of movements.

The more things I have to do for myself, the worse the catatonia is.  So in some ways it was at its worst – in some respects – when I was first moving on my own and had no services.  I think this is true because the more things I have to do, the more that fills up my brain, and that means less brain for things like movement, and movement suffers.  Like many people with autistic catatonia, I have found that the more things other people do for me, the more capable of functioning I become in other areas.  It sounds like a paradox but it’s not.  Imagine it as all these weights I carry around on my shoulders, and each task they help me with removes a weight.  This is true for many autistic people in general, but the more severe our catatonic traits, the more true this is, I believe.

I would be classified as having mild to moderate autistic catatonia, by the way.  It has a severe effect on my life, but a person with severe autistic catatonia has no voluntary movement at all, or barely any, has to be pushed around in a wheelchair and lifted and stuff as if they’re quadriplegic, and may need to be tube fed.  Well I’m tube fed but not for that reason.  At any rate the severe form involves having no ability to move on your own except under extremely rare circumstances.

I find that I freeze less when I have people carrying out a routine with me.  Like every day, staff come in and do the same set of actions with me, and that helps my body learn to do those actions without as much freezing as I used to have.  It helps that all the actions are an interplay of them doing something, with me doing something, so all the cues for movement are right there.  And they’ve learned not to simply verbally ask me to do something, because it might never get done.  

What they do, most of the time, is a kind of physical prompting that I find extremely useful.  For instance, if we’re going to brush my teeth, they hand the the flosser, and once I have it in my hand, the object tells my hand what to do with it, and I floss and give it back to them, then they give me mouthwash in the same way, then a tongue scraper, then a toothbrush.  If they had told me to go into the bathroom, get those things ready, and do it on my own, it would never happen.  And if they verbally prompted me through the entire process, it would be long, slow, arduous, and possibly I would freeze up multiple times in the middle of it.

So I do best being prompted by objects in my hands.  Objects in my hands tell my body what to do with them, better than any amount of verbal prompting ever did.

Verbal prompting used to be awful.  It would be “Okay you can move your mouth, can you move your neck?  You can move your neck, can you move your shoulder?”  All the way down to my finger.  It would be like operating a robot by remote control, and it was so exhausting for everyone involved that I frequently froze up again and we had to start over.

When I do freeze, sometimes a gentle touch is all it takes to get me going. Other times, I need touch in the specific parts of me I want to move.  It helps best if people touch the joints, like my elbow and wrist, rather than areas between the joints, like my forearms.  Sometimes this has resulted in something that looked on the surface like facilitated communication, because someone was touching my back, shoulder, or arm, to help me move well enough to type.  (Or sometimes, if my freezing involved mashing my hand into the table really hard, they’d pull back on my hand so I could move it laterally and pick out letters.)  But FC is a very specific technique, so whatever we were doing was not FC and people got very sick of being referred to as “my facilitator” without anyone asking permission.

I don’t know if any of this is information you wanted, but it’s what I’ve got right now.

Notes:
  1. nectaresque reblogged this from thismysfit and added:
    Reblogging because a lot of this applies to me. Hi.
  2. ndsenseandsex reblogged this from withasmoothroundstone
  3. withasmoothroundstone posted this