Pathological Demand Avoidance (PDA)

A few months ago, I became a member of some groups for pathological demand avoidance. Pathological demand avoidance (PDA) is a term coined by Elizabeth Newson from the UK for a set of symptoms that she claims are part of a distinct autism spectrum disorder. These symptoms include:

• Obsessive resistance of everyday demands.
• Appearig sociable on the surface but lacking deeper social understanding.
• Excessive and sudden mood swings.
• Language delay, possibly due to passiveness./LI>
• Obsessisve behavior, often focused on people rather than things.
• Comfort (sometiems excessive) in role-play and pretending.

People with PDA are thought to have high anxiety and a need to be in control. This causes them to actively and/or passively resist demands placed on them by others.

I am not yet sure what I think of the existence of PDA. Is it yet another pathologization of annoying-but-normal behavior, or, worse yet, is it the new drapetomania? You know, the compulsive running-away of slaves? What I mean is, is it, a healthy response to excessive authority? I was discussing something like this with my therapist last Thursday. I didn't mention PDA - we're treating my symptoms as part of borderline personality disorder -, but now that I think of it, I realize that the idea of PDA fits in neatly here. I have a seemingly compulsive need to resist expectations from others. Until I spoke about this to my therapist, I've always said this is a normal part of rebellion against the institutional system I'm in. Or is it? I resist attempts to give me responsibility for my own life, too, and eaarlier last week, realized I wasn't sure I wanted to recover, out of fear of losing my support before I was ready.

Now I am not advocating labeling people with more diagnoses than they need. In my own case, it could well be that my problems are due to a combination of autistic overload, BPD-related identity confusion and having lived in situations where others determined my goals for much of my life. I am still unsure as to whether my therapist is not one of these authority figures, who wants independence only insofar as it isn't defying her idea of who I am.

An important thign which Newson highlights in relation to PDA, is that ABA-style behavior modification does not work with PDA children (or presumabley adults). The therapeutic relationships is much more important than it is presumed to be in behavioral interventions. I like this, although I feel the therapeutic alliance is important for others with autism spectrum disorders too.

One thing I don't like about Newson's theory, is that she presumes PDA sufferers to be manipulative. Now I am not one to say that autistics can't manipulate - they can and do -, but here comes the question again of where manipulativeness comes from: is it an innate PDA chharacteristic, or is it learned behavior in an attemt to manage a hard-to-cope-with environment? Newson assumes manipulation in PDA is not something the child chooses out of a will to be annoying, but out of a need for control and to avoid anxiety. Overload, of course, is often confused with anxiety, so in this sense I'm not too sure that I think.

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.

"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.

To Medicate or Not to Medicate?

Yesterday, I was searching for autism bblogs and stumbled across Pam Byrne's blog. In one of her latest posts, she writes about her son's increasing and then decreasing behavior problems. One of the things that stuck out to me was the tough choice Pam made to medicate Alex.

Back when I first learned aobut autism, it was through Autistics.org and other autistic advocacy sites. I was a firm opponent of medicating for behavioral control, believing that an autistic child or adult should be helped with proper supports, not dulling meds. Particularly neuroleptics (antipsychotics) can cause severe cognitive dulling and other side effects with autistics, so I reasoned one should stay away from those especially.

That was in like 2006 to early 2007. In July of 2007, however, I was about to move to a new city and into independent living. I was having terrible meltdowns related to this. My community psychiatric nurse suggested a psychiatrist's consulttion, and I agreed. The psychiatirst listened to my story and thought for a bit. Then she started to describe what she thought medication should do for me, and I paged my inner pharma encyclopedia to find out what she might be thinking of prescribing. She suggested Risperdal, an antypical antipsychotic. I had little opportunity to change my situation in any other way - the move, that was one of the worst moves in my life, had already been scheduled for the next week -, so I felt I had no other choice but to consent to the medication.

This was a bad choice: I had quite serious side effects that weren't being taken seriously, and the med was used to dull me into submission when in fact living on my own was not suitable for me. I tapered myself off the Risperdal two months into my new living situation. Three weeks later, I landed in a psychiatric crisis tht led to hospitalization.

The psychiatrist who admitted me into the hospital recognized the need for better supports rather than medication. I agreed and was med-free apart from a PRN tranqilizer now and then for over two years.

However, supports have their limits. Especially in a society that relies on massive budget cuts, it's not like you can actually get perfect supports. I at least can't. Also, I have always wondered whether medication could somehow help me reduce the overlaod that is actually quite inherent in my experience of autism. Medication should not be used to manage behavior in an unsuitable situation, but what if one's support situation is as suitable as can be? Could meds actually calm the autistic mind when it is nonsituationally unquiet?

I asked to be put back on meds in early 2010. The medication suggested by my psychiatrist this time was Abilify, another atypical antipsychotic. And to be quite honest, I like it. I started at a very lwo dose, which had to be increased three times. Not always did I agree to this, in the sense that on occasion I've felt that supports could've been improved, but they won't whether I'm on meds or not. I have minimal side effects even on a pretty high dose of Abilify, and I can tell, three weeks after my l ast increase, that I'm happier this way. So is Pam's Alex. Of course, with a child or non-communicative or intellectualy disabled adult, it's harder to tell whether the person is truly happier than with a person like myself, who can communicate reasonably well. This is why I still advocate taking proper care when thinking of putting a child or communicatively impaired or intellectually disabled adult on an antipsychotic. These meds do dull cognition, and it can't be known in these cases whether the person is truly less irritable. I strongly oppose the idea that this is not important, except when a person is severely aggressive or self-destructive. In cases other than this, a person should only be put on meds if they'll actually be feeling better. I do, and going on Abilify was therefore one of the better decisions I've made in my life.

From WordPress to Blogger to WordPress and Back

I have had a dozen blogs in only the past six months. Most were here on Blogger, but I had quite a successful WordPress blog a couple of years back, and no-one wants to come to my Blogger blog. Well, that's fine with me now, cause I want to be able to share my own stuff. It's fine if people come, but I don't want it associated with my full name, and that's what I did on WP. So here's my personal bloggy thing again.

I reside in a mental institution in the Netherlands. Have been institutionalized since 2007 when I was 21-years-old. Two months ago, I moved to a different institution to be closer to my husband, who lives in an apartment we rent. I was originally meant to go live with him soon, but we decided that's not good for either of us. I now need to find suitable housing in a supported living acccommodation or something.

You may see different names signed in my posts. This is because we're multiple. We have a diagnosis of dissociative identity disorder, although a lot of people doubt this diagnosis. Some laypeople say my alters are not real. I know they are. We have zero tolerance for identity policing. However, we will focus on our symptosm and not the diagnosis.