Treatment for Its Own Sake

Sometimes, I get the impression that the treatment we get in a psychiatric institution is done for its own sake only. Like, yesterday I was irritable. I tried to communicate that I wanted the radio to be turned off. No-one was in the room except for a nurse, who went like: "Have you discussed with your therapist how you can cope with this?" She meant coping with overloading noise. I went totally defensive and defiant and told her I wasn't going to cope with the freaking radio if no-one was there listening to it. She told me the other clients were coming soon so the radio was on in case someone wanted to listen. Well, WTF? This whole thing gave me the impression that the only reason the radio was on was to teach me distress tolerance.

Let me tell you one thing, the real world isn't there to teach people distress tolerance. If you want me to be prepared for the real world, then don't create these fake situations that have no meaning outside of the hospital. The nurse meant to tell me to communicate my wisht o have the radio turned off differently, but then tell me so and don't go like: "In the real world you'll have to live with others who want to listen to the radio."

I know that the psychiatric institution is not like the real world. No-one beyond college age in the Netherlands lives with ten people on a hallway with just their own room. In the real world, you have to negotiate radio-listening time sometimes, but not with a nurse whose ultimate goal is to annoy you so you can learn distress toleance - unless you've got a two-year-old or a teenager, maybe. More importantly, real-world dynamics are not reflected in the psychiatric system, so don't pretend that they are. Stop pretending to prepare patients for the real world when you aren't. Institutional dynamics are the first thing that need to go if you want to prepare people for the real world. Since these are not going out the window anytime soon, let's just stop assuming you're preparing us for anything other than institutionalized life even if it means institutionalized in the community.

More Crafting, This Time for Christmas

Thanks lovely readers for all the nice coments on yesterday's post and thanks for the follows. If you've only visited yesterday's post, I want you to know this is more of a general blog with an assortment of posts, some of which can get pretty involved. However, I'm loving craft blogging again so here are a couple more cards. Both of these have a 3D effect to them. The first was done using die cuts from a die cut pack, and the second was done using a lovely set of Christmas tree dies by Marianne Design. I am not able to use regular cut-outs, but these were simple enough so that I could build up the image.

Edit: oops, discovered I already posted that first card earlier. Sorry for anyone who's seen it twice.

Crafty Endeavors

I used to have a crafting blog that I posted regularly to. However, as time progressed and my cardmaking did not, I lost interest in posting pretty simple, childish-looking cards. I still made at least one per week for a Christmas card challenge, but only so that I wouldn't be kicked out of the group that ran it. Since I moved to my current institution in June, also, my individual art therapy sotpped, and the group I attend is pretty demanding of independence. I want to transfer to a less demanding group, but have not yet been able to speak to my named nurse on this.

I've been looking for crafts that didn't require sight, and on a Facebook group for crafters with chronic illness, someone mentioned quilling. So I bought a quilling starter kit a few weeks ago and have been playing with it. First, I designed - or rather, didn't design - a random pattern. I didn't take note of or get feedback on the colors or shapes.

I decided not to finish the random pattern because it really felt like a waste of paper. Last Tuesday, it popped into my mind to make an actual design, and the simplest would be to make a card border. I used purple, pink, green and blue quilling paper. I only found out as I was finishing the project yesterday how to make the holes in the coils smaller. I use the needle tool because I can't manage to put the paper into the slot of the slotted tool. I'm not sure how to make the holes as small as they are on the few ovals that one of my staff made using the slotted tool, but overall, I'm quite content with this card. The cardstock and the center flower are from my stash.

I have been trying out a few other crafts, like polymer clay, with which I made a number of jelly roll beads. I have not yet been able to make them into a bracelet or necklace, because some essential jewelry-making supplies have not yet arrived.

I also just today made a card using colored sand, but I'll have to wait to show that one till my husband can take a pic, because I don't want to damage the surface of my scanner with the sand.

"Use Your Words."

Last Friday, Neurodivergetn K wrote a post on the phrase "Use your words.". I only read it today and, partly because I got triggered by this post, I am going to blow off some steam about this phrase. A lot may seem like a repetition of what Neurodivergent already said, but well, tthere can't be too many autistics speaking up against NTs putting their own arbitrary standards of normalcy ahead of our needs.

As readers who're familiar with me and my blog will know, I reside in a psychiatric institution. Its aim is rehabilitation. I've been on a ward that had an even more open rehabilitation-focused vision at least on paper, but staff there were much more willing to bend the rehab paradigm a bit to accommodate me than the staff on this ward are. Note that rehabilitation has two meanings in psychiatry, one in which the client is as much in charge of their care as possible, and the other where the client is trained to become (or appear) as normal as possible. I'm talking about the second meaning here, as I have absolutely no problem with the first.

"Use your words." As I wrote in a comment on Neurodivegent's post, this phrase is often accompanied by "You're intelligent" or "I know you can do it" or some variation on this theme. Let me address these follow-up phrases too.

"You're intellignet." And now what? Firstly intelligence is not the same as speaking ability. Second, what if I weren't intelligent? Would I be cut some slack then, or would my needs just not matter as much? A variation on this theme which I've come to hate almsot as much is "You're an adult". It has its own implications in light of my multiplicity, discounting part of me that actually isn't an adult. If I act like a child, maybe it's because at that particular point I am a child? I know the staff aren't going to buy into that since they've thrown out my DID diagnosis, but it's not like I'm any less or more multiple now that we call it BPD.

On a related note, telling me that my abilities are incongruent, isn't going to help me. I know they are. I know I'm sometimes able to do things that I can't do at other times. I know I'm able to do seemingly complex tasks but not simple ones sometimes. I know I can have quite spontaneous-looking, appropriate conversations sometimes and barely make any sense of my words at other times. Telling me this is not possible is denying the obvious. Telling me this is not appropriate is like telling a blind person to look harder because they can hear fine or telling a person who is night blind that they should be able to see in the dark because they could see fine during the day. (I know many night blind people are also partially sighted, but I'm simplifying the situatioon a bit.) It's not like developmetal disabilities like autism are any less real than visual impairment just because they're more difficult to understand and seemingly easier to overcome through behavior modification.

Let me talk about that now: behavior modification. I was going to write a separte post on that, and maybe I will write one more. Here's the thing: telling me to "use my words" will most likely get me to pull out a script. You didn't know I had them, clueless neurotypical who knows me just enough to see my non-autistic appearance but not well enoguh to truly listen? I may have somewhat more elaborate scritpts than the example Neurodivergent gave, but I do have them. This is why, when I'm interrupted or distracted while executing the script for telling the staff I'm distressed and need help, I often end up having a meltdown. And this script gets interrupted a lot of the time, oftentiems even by staff. They want exact explanations of what I want or need from them, even if they know pretty well what I need. I've sometiems gotten to ask for my PRN when that's not what I needed just because it was the shortest script in that part of my brain I could access. Asking for some quiet time with a staff member, which is what mostly helps me, is a much harder script to execute. Please know: "Can I say somethign/ I'm distressed," is not okay. It's got to be: "Can I please speak to you in a quiet place for a bit when you've got the time? I'm distressed." Sometimes I think it's NTs who are literal-minded.

Need Care? Be a Pain in the Neck

Over the past couple of weeks, I've been pretty fearful of losing my autism diagnosis now that the DID/PTSD was changed to BPD. I've had a number of arguments with various people over whether certain aspects of me, like my inability to live on y own or with little support, are due to autism or due to BPD. The answer matters in some way, because, as I said a couple of weeks ago, if it's BPD, it means it can be treated with cognitive therapy.

Now I have always been very adamant that my inability to live on my own is due to autistic organizing and processing difficulties. To the person believing the inability is due to BPD, this comes across as defensiveness: I'm just scared to take repsonsibility for my own life and I use autism as an excuse.

Unfortunately with this comes the idea that this fear will go away if I just get enough kicks in the butt. I know that flooding is used in anxiety treatment, but is it truly the most appropriate way of treating the fear of taking responsiiblity for your own life, assuming this is indeed what is going on?

I've often wondered and worried how people are going to tell that they are wrong in assuming that all my inabilities (except for those that are obviously due to blindness) are just insecurities. I mean, the only time I succesfully signaled that I needed more support, in 2007, I did so in a very much borderline way, ie. by threatening suicide in a public place. It is easy to say that this is my BPD acting up and I need to be ignored.

Of course, the currently mentally healthy person would say, why don't you just ask for more help in an appropriate way? Now I will tell you something about the way the care system works here: depression, anxiety or other emotinal problems are no grounds for care. Only behavioral problems are. In other words, if you need help, you've got to be a pain in the ass. Now please untangle this reality for me: if you're still well-behaved enough to signal you need help without destructive actions, you're obviously healthy enough not to need this help. Now if that isn't reinforcing behavior problems, I don't know what is.

On Appearing Autistic: Theory of Mind

Tonight, I was discussing with a nurse an autism support meeting I went to last week. We got to talking about how autistic the participants appeared, and the nurse mentioned that she had a family member who works at one of the country's largest autism facilities, which happens to be in my town. The nurse talked about how the autistics who go there are much more obviously autistic than I am.

I have been diagnosed with autism by three different diagnosticians in three different evaluations between early 2007 and late 2010. The last two, who did the most extensive evaluations, both had their reservations about the diagnosis. There were roughly two reasons for this: 1. that I appear to have good theory of mind, and 2. that they weren't sure which of my oddities were due to autism and which were due to blindness or other factors. I want to talk about the first now.

I am pretty sure I mentioned this before, but theory of mind is not the same as prosocial behavior. People who are antisocial, except for maybe the worst of psychopaths, have good theory of mind and use it to their advantage. I honestly have pretty bad theory of mind, to the point where I fail the more compliciated versions of the Sally and Anne test. Theory of mind is the ability to shift your focus from your own cognitions and emotions onto anoother person's. In the Sally and Anne test, Anne has a toy in her basket. She leaves the room and Sally moves the toy to her own basket. Then Anne returns and the person being assessed is asked to say where Anne would be looking for the toy. The correct answer would be Anne's own basket because it was here when she left, but people with poor theory of mind who have seen Sally move the toy, will say Anne will look into Sally's basket. Note that the Sally and Anne test in this version is passed by most typically-developing four-year-olds, and real-life theory of mind is much more complex.

I, for one, appear to have good theory of mind, because I am generally pretty sociable and also because I exhibit a good deal of prosocial behavior. I was told by my former therapist that I had good theory of mind because I apologized in about every E-mail I wrote to her in case she didn't want to receive E-mails from me. This, however, is not theory of mind. I have no clue when it is and isn't appropriate to write your therapist out of session and so apologize just in case. Inndeed, when I am rude, I pretty often forget to apologize if I even realize I am rude. Because I don't talk out of turn and say rude things 99% of the time, doesn't mean I know when it's appropriate to talk and what to say.

In addition, I have above-average verbal intelligence, which allows me to reason through social situations pretty well. I used to make my own Social Stories in high school, but still was seen as quite a rude person. Now that I'm in my twenties, I've learned to adapt and become less in your face unless I'm agitated. While this could connote a better theory of mind - after all, I can reason through social situations to some extent -, it is not nearly enough for what is required in everyday social interactions.

I at one point read an article by I believe Tony Attwood on Asperger's in females, in which it was said that Asperger's is often not recognized in females because male Aspies tend to be active but odd, ie. talking out of turn, talking on and on about one subject, etc. while female Aspies are often passive, ie. only interacting when encouraged to. I reckon that more passive Aspies tend to aslo be more cautious about their social interactions. This could easily lead to them not appearing as Aspie because they aren't saying inappropriate things.

Please remember that autism is not a behavior disorder. It's a neurodevelopmental disorder that impacts on various aspects of functioning, theory of mind being just one. Even if a person has relatively good theory of mind, that doesn't mean they don't have the processing dyfunction that is thought to cause autism.

People Aren't Broken

After being told she'd be officially diagnosed as autistic, Autisticook wrote a post titled I'm Not Broken. I commented on this post, but wanted to expand on and generalize this a bit more.

I remember when in DID meetings, there were people who didn't want to have DID, and people who felt the DID diagnosis somehow validated them. I fell into the latter category and was often told I wanted DID too badly. The people who felt their diagnosis was validating, often said it made them not be crazy. "I'm not broken, I was traumatized," one person said, incidentally in the meeting in which I was kicked out for allegedly having imaginary DID.

In my journeys as an autistic, I learned a lot of what Autisticook describes: autistic isn't broken. In my brief travels through the natural multiplicity community, I learned the same of multiplicity. Then I heard dissociators say they aren't broken but traumatized, almost as if their perps are responsible for every single thing in the dissocitors' lives that is remotely "broken", and I cringe.

I don't care who or what made you the way you are. People aren't intrinsically broken, and using neurology or abuse history or whatever as a reason for not being broken, only makes other people, who don't share this same attribute, look broken. Like, are people broken if their behavior can't be directly linked to trauma or neurology? I'd say they arent'. Their behavior may be unacceptable, but so may the behavior exhibited by autistics or trauma survivors.

I am not saying you can't use your neurology or experience as part of your identity. I do this all the time. What I am saying is that a diagnosis is at once no excuse for unacceptable behavior, and unacceptable behavior doesn't make you broken regarldless of your diagnosis or lack thereof.