Tag Archives: Psychiatric Institution

Long-Term (S)care Planning

Next year, my institution is going to undergo restructuring and all people with the lower levels of care will be kicked out. Lower levels of care in terms of institutional care, that is, so my level five (out of seven) care package does count. Exceptions are being made for those who’ve been completely institutionalized, so that they can’t live in the community, but that doesn’t include me having spent “only” seven years in an institution.

Honestly, I’m worried, but also determined. I was actually going to be referred to the Leo Kanner House workhome. The Leo Kanner House is an agency for autistic children and adults, specifically those without an intellectual disability. The workhome is their institutional, long-term placement for the more severely disabled adults, but firstly they have a waiting list a mile long (or two miles, or three), and secndly, my care package will likely by the time they have a place for me, not qualify me for care there anymore. Five out of seven sounded heavy duty when I first was assigned this care package in 2009, because I got there from three and that was already called something about “intensive support”. Currently, those with any care package below five are expected to live independently with outpatient and home supports. Fine with me, and I would’ve loved to attain this level of independence, but it’s not like the people in these care packages get the additional care that living on yur own requires versus living in a group home or institution.

As far as I’m aware, the people in care package five are allowed 24-hour care until the Long-Trm Care Act passes, which is only God knows when. 24-hour care, for clarity’s sake, means having someone available on call or at best in the group home or on the ward 24/7. There’s absolutely no-one who is allowed 24-hour supervision under the Dutch care system. Anyway, assuming that I’m entitled to group home care until whenever, but will be kicked out of the institution next year, I decided to E-mail my therapist to discuss referring me to supported housing.

There are two supported housing agencies in the area that cater to psychiatric patients – and autistics without an intellectual disability fall under the mental health system here. One of the agencies is a larger one which has existed for several decades. On their page about autism care, they only advertise a training home where autistics are trained to live independentlly and have to move out within a year. Not suitable for me, as 1. I already got enough training home experience to know I’m not going to learn much there, and 2. there’s no way I’m going to learn to live with only home supports in a year’s time, if ever. My husband and I are going to E-mail them anyway as, being a larger organization, they might be able to provide some kind of accommodation where we can live together with enough support for me.

The other organization is smaller, having only about six or seven group homes throughout the province, though mostly in my area. They have an autism-specialized group home in the nearest big city, in which they work together with the Leo Kanner House, but there are two drawbacks. Firstly, this group home is located down town, which means I won’t be able to travel safely even for just a walk around the block. The second drawback is that it is part training home too. Then there are two group homes in the countryside near a neighboring town from here. It is one of these group homes I’m asking ot go on the list for if I pass the intake interview. I will be calling this organization tomorrow after I speak to my therapist. Not sure how or when I’ll be contacting the larger supported housing agency.

One of the positives about moving into a group home is that my therapy falls under a different insurance scheme then. Under care packages for those in institutions, you’re only entitled to 50 minutes of “treatment” a week. That’s normal, you’d say. The thing is, “treatment” includes not only psychotherapy, but also art therapy, social work, consultations with a psychiatrist, etc. Basically anything other than staff support and day activities. Based on this, I get psychotherapy only once every other week at best (even though until recently I had no other forms of treatment, but oh well). Under group home care packaging, support will still be covered, but treatment isn’t covered. You’ll have to get that paid for through health insurance. That means, if I’m correct, that you can get more treatment paid for if your diagnosis warrants it, which mine does if I have to believe my therapist, who says that people with borderline personality disorder normally get at least a session a week. (Day activities are from 2015 on covered through the local government to make things complicated, so I have no clue how m uch I can get of those.)

I also asked my therapist to contact the Leo Kanner House about doing a consultation there. In all honesty, I’d like to get therapy there (they offer psychotherapy too) rather than at my local mental health agency, but as far as I know, getting both agencies involved is also possible if you have a dual diagnosis. As I wrote a few weeks ago, however, my diagnosis of autism is being questioned, so I’m asking my therapist to call my old institution to request my old records, too. I don’t mind having to answer a zillion questions about my autism for only about the fourth time (yay, I can do sarcasm, does that make me NT?). What I do mind is having to get my parents to come over again, for the third time in their case, to do the developmental assessment. Oh wait, what if my childhood development has changed since 2007? My therapist had better get the records, and she’ll hopefully straighten up about my blindness, as the Leo Kanner House had a blind client several years ago.

Comfort Rooms: Not a Convenient Alternative to Seclusion

A few days ago, the owner of a blindness and mental health E-mail group I am on started a discussion about comfort rooms. Commonly, they’re seen as a kind of less restrictive alternative to seclusion or restraint, but this is a misconception. I have personally experienced being placed in the comfort room and not allowed to come out. Being blind, I also didn’t really notice the comfort room atmosphere, which should be relaxing. In all honesty, the comfort room at the locked ward in the big city institution I was in, was little more than a beautified seclusion room. While the comfort room at my current ward in the small town institution is more calming in its ambiance, I still sometimes get told that I can go into the comfort room in a tone of voice as if I’m being secluded.

In reality, comfort rooms are but one form of relaxation for an irritable patient. For others, going for a walk, listening to music or exercising on a stationary bike might help. I can see why nurses choose the comfort room over some of its alternatives, for a patient in a comfort room requires relatively little care. That is, they are presumed to require relativley little care. All five or so times I spent in comfort rooms, once in my current institution and about four times in the city one, I was left alone whether I wanted to be alone or could safely be alone or not. In this sense, the Netherlands is different from other countries, where patients in crisis are placed under special observation. Here, if you need more care than the staff can provide, you’ll be placed in seclusion or “seclusion light”, ie. the comfort room.

A key aspect of introducing comfort rooms, is that they need to be embedded in a philosophy where the patient is actively engaged in their treatment. Time in the comfort room needs to be a choice. I for one find the comfort room particularly ineffective, and would rather go for a walk or exercise. One reason why I find the comfort room ineffective, besides having been coerced into using it, is accessibility. I didn’t have a clue what was in the comfort room, so was essentially just seated on a couch or chair. Granted, the couch in my current ward’s comfort room is actually comfortable, but the chairs in the city institution comfort room were definitely not. I recommend staff acquaint patients, especially blind ones, with the comfort room at time they’re not irritable and maybe they’ll need to assist the patient sometimes again when they’re using the comfort room for relaxation for the first few times. Staff may not like this, as many view the comfort room as a convenient way not to have to bother with irritable patients while looking like saints for avoiding seclusion. However, seclusion is not a substitute for proper care, and neither is the comfort room.

Always Greener on the Other Side

Another jouranling prompt. This one was meant for kids, and it asks what we mean when we say “The grass is always greener on the other side of the fence”. This saying speaks to me and makes me feel quite uncomfortable, because I can definitely relate.

I remember that, when I go to a new place, like anew ward or institution or supported housing or whatever, I’m always optimistic that this will be suitable for me, but I’m very soon disappointed. For example, when I first got to this institution, I felt truly like I’d landed in a cozy place, or as close to it as an institution can get. Within days, however, I heard the staff reprimand the clients for not doing their chores and I was upset at the phrasing: “You guys are the most independent group, the more independent one on this unit.” A few days later, I was further disappointed when my staff insisted I do chores I cannot do. Pretty soon, I wished I’d stayed in the big city institution, and I still wish for that at times.

I have always felt like this. When I came into blindness rheabilitation in 2005, I saw it as a wonderful opportunity to learn sklls and aadjust to my blindness. By the middle of the four-month rehabilitation program, I felt I was lagging horribly behind and hadn’t learned most of the skills I’d wanted to. Same when I came into independence training, the psychiatric institution and every ward I’ve been at since except this one, where I was quickly realizing that it wouldn’t be helping me much.

I read in a paper a few months ago that this thing where “the honeymoon is over” and people start out okay but end up worse after a while, is common in people with borderline personality disorder. I remember in 2007, when I’d only been in the hospital for a few weeks, being told by another patient, who happens to have BPD too, that I need to work on myself, not on changing my environment every so often. I realize this at some level, but at another level, I think: “What do you think I was in training and treatment for all these years? To change the environment? No!” Yet maybe I still look to others to change me, not to myself.

Letter to My Twelve-Year-Old Self

When reading journaling prompts, some ask the journaler to go back into the past or spring forward to the future. There is in fact FutureMe, a site that has you write letters to yourself that will be E-mailed to you on a set date in the future. This is an interesting experiment, because it allows the future self to see what the past self was like without bias. Then again, writing to your past self is a good way to reflect on how your life has changed. This is a letter to my twelve-year-old self.

Dear twelve-year-old Astrid,

This is you speaking, fifteen years on. I am 27-years-old now and looking back on your life. I see your struggles. You are becoming aware of your social and emotional problems, yet needing to hide the their true extent because showing would mean you’re stupid. Let me assure you, you’re not stupid. You are autistic, and many people who have the cognitive abilities you do, are.

You’ve just received the report from Dr. M, the educational psychologist who evaluated you in what would become the final and successful attempt at getting you a recommendation for mainstream schooling. As you are aware, he recommended you use the remainder of the school year to sit in with a mainstream class to see if it’d work. Last month, you also went to the open house at the academic magnet secondary school/grammar school your sister’s friend’s big sister is attending. You are excited about going there. I appreciate that. I admire your optimism, giving each new start a new chance for success. At 27, I’m quite disillusioned. Grammar school was pretty bad, but I know you persevered. I wish I had that capacity now.

At the same time that you are preparing to go to mainstream grammar school, you fantsize about getting help for your social and emotional problems. I admire you for having devised your own tretment goals and thinking of ways to reach them. Sadly, you didn’t get help with this. I would’ve liked to tell you that I do, but let me say, psychiatric institutions are not great. Back in your day, there was a documentary about a young woman who was too intelligent for the system for people with intellectual disabilities but didn’t fit in with the mental health system either. You feared, or maybe you hoped, that you’d one day be her, because in the end she was accepted into a suitable treatment facility. I identify strongly with her, although I’m no longer locked up.

I know life isn’t easy for you being twelve. Unfortunately, I can’t tell you that it’ll get better. You hope to be a mathematician or linguist when you are my age. While I did study linguistics briefly, I had to dorp out due to mental health problems. I ended up in a psychiatric institution, and I’ve still not found the right treatment or care.

I know you struggle with losing your vision. I still do. I haven’t become completely, totally blind yet, but I can only see a little bit of light now. A few months ago, I went to have surgery to hopefully restore some sight, but it failed. The good news is, accepting blindness will become easier. I still struggle, but not nearly as much as you do.

Oh, and friendships will also get easier. I know you don’t have any friends. Guess what? I’m married now. While I don’t have any friends besides my husband either, I do have some connection to other people. You know, the Internet will come into your life, and this is great. Through the Internet, I’ve been able to connect with other people and find out tht I’m not alone on this journey. There are other children like you, and there are adults like me. This is sad, but it may help you feel less alone.

Keep on fighting, Astrid. I know life ahead will be hard for you, and even now I find it hard to appreciate the accoplishments you were so badly looking forward to, but as I said, I admire your perseverance. Without that, I would not have been where I am now.

With love,/P>

Your 27-year-old self

When I Shouldn’t Reach for My Meds (But I Do)

Today, I had a discussion with my psychiatrist. I’ve been feeling okay overall, but, when my therapist and social worker got talking to me about going into supported housing, it caused me to be irritable for days. I notice this a lot lately: when I’m able to stay in the present and just do my thing, I’ll still have some mood swings, but they aren’t nearly as severe as when I need to focus on the future. My therapist and I are clearly not on the same page in terms of my goals, and this causes me intense frustration. I’ve reached for my PRN medication almost everyday last week, even though it isn’t effective. At least the though that something would be numbing me and I had some control over my emotions was there.

My psychiatrist pretty much said that situational frustration is not a reason to reach for meds, and he’s right. That’s one of the main reasons I stopped my Risperdal, which had been used to make me just numb enough not to have a crisis while living independently, but not so numb that I didn’t feel the intense pain anymore. In a way, I want nothing to do with my increased dose of Abilify either. It wasn’t increased now, but it’s been increased twice since I came here seven months ago, while I’d been stable at a moderate dose for three years before I cam here. Medication isn’t a cure for shitty circumstances.

Yet I reach for medication everytime I feel frustrated. It’s probably what I’ve been learning to do. I can’t get more support if my therapist doesn’t want me to get it, and it’s still a fact that in psychiatric institutions, patients have little say in their treatment, unless their treatment goals are in line with the latest treatment philosophy. Back when patients had to be locked up for the rest of their lives, people wanting to move into the community, were medicated, secluded and otherwise forced into submission. Now that psychiatric services have to face budget cuts and their philosophy has changed to rehabilition, patients like me, who cannot cope with this pressure, are, albeit more subtly, still forced into submission. Still, the only way to numb the agitation that I feel at people trying to control my life, is to reach for my meds. It isn’t going to get me out of this vicious cycle, but then again, what is?

Effects of Institutional Abuse

A few days ago I was stumbling across blogs as I found Kim Saeed’s post on narcissistic abuse and the prison camp effect. I have never been in a relationship with a narcissist, but for some reason, I could relate to its effects. Then today I came across a post on confusion and forgiveness in emotional abuse. Some points in this post struck a chord with me. I often am convinced that I’m the one doing something wrong in every case of disagreement. This is common in abuse survivors in relation to their abuser, but I do it in any case where there is a perceived power dynamic, and I see power dynamics everywhere. Even with supportive people like my husband, I find myself second-guessing myself.

My therapist has said that I have likely been in a situation where other people controlled my life all along. This was not intended by the individuals who did this and isn’t necessairly bad. Children need some level of direction from their parents, for example. Where it gets problematic is where the child or adult becomes more controlled by parents, carers, staff or other authrotiy figures than is healthy for them. I am using the standard of the controlled person’s health here rather than society’s norms, because society allows for and even condones a lot of harmful power dynamics. Prison camps for example. What I mean is, being controlled in a way that is socially accepted can still be harmful and may have the same effects as narcissistic abuse.

One factor that makes institutional abuse, like prison camps of psychiatric abuse, more complicated than abuse by an individual, is however that the individual is not solely to blame. For example, psychiatric patients are commonly subjected to solitary confinement and forced treatment. This is institutional abuse. It involves a generally accepted power dynamic. The nurse who secluded me or the countless nurses who threatened it were not narcissists (although I have my doubts about the doctor who shove the seclusion plan down my throat without consent). They were simply doing their job, and their job was to control even if it’s for goodness’ sake.

The Importance of Day Activities

Over the past week, I’ve been having a hard time of it at my ward. I decided on Sunday that I wanted to leave and go backt o my old city institution. Then over the week, I participated in some day activities on my ward, in the activity building and in the multipurpose room at another adult long-term care ward. This made me realize that at least day activities are much better here than they were in my old institution, and I softened up a bit. I had a talk with my therapist on Thursday, and this made me decide I don’t want to leave for now. This talk contributed to that decision, but the good experience I’d had going to day activities did more.

I’ve heard on some institution wards day activities are not provided, because the clients need to learn to occupy themselves. This, in my opinioon, is the biggest horse manure around. Currently mentally healthy people have a job, too, so why shouldn’t those who are too disabled or ill to have a regular job? Most people here go to some kind of industrial arts type of day activities, so it’s actually real labor. For some, like me, this is not suitable, and they end up doing arts and crafts. This may seem more like a replacement of leisure rather than work, but don’t mentally healthy people have a variety of jobs, too? For some mentally ill people, just getting out of bed is hard work, and simple day activities can provide them with the structure that a job does, too.

There are many benefits of day activites. Some of them, like a daily structure, are applicable to real jobs too. Others, like distraction from one’s mental health problems, are not, but that doesn’t make them any less useful. Becoming mentally healthy, after all, involves more than being able to do a regular job.

I for one find that day activities provide me with meaning to my days, structure, as in a reason to get out of bed, social interaction, distraction, and enjoyment. Day activities are in my opinion more beneficial to my mental health than the psychotherapy I get. This is one reason I’m willing to put up with somewhat unsuitable psychotherapy in exchange for much more suitable day activities.

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, there 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 almost 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 separate 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 enough 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, oftentimes 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 sometimes 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 something/ 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.