Tag Archives: Seclusion

Q – #AtoZChallenge on Mental Health

Welcome to the letter Q post in the #AtoZChallenge on mental health. This letter was hard at first, but I still came up with a few words. Here goes.

Quality of Care

Quality of care is important mainly to health insurers. That is, it’s not necessarily the real quality of care that’s importnat but how it’s documented in paperwork. As such, we often get patient satisfaction questionnaires. I think they’re worthless. So is the endless stream of paperwork staff have to complete to justify the care they provide. After all, the more staff have to deal with paperwork and patient satisfaction questionnaires, the less they can actually do the real work of care.

Quality of Life

Another loaded term which is used to assess people’s satisfaction with their lives. We get this scale called the Manchester Short Assessment of Qualty of Life questionnaire four times a year. I laugh at the randomness of questions. Like, inbetween questios about your satisfaction with friendships, your financial situation and such is the question whether you’ve been accused of a crime within the past year.

Seriously though, quality of life assessments have real impact on care and policies. For example, if a lot of people treated in a certain way for a certain condition have a very poor quality of life post-treatment, this treatment is unlikely to be used often in the future.

Quiet Room

The “quiet room” or “time-out” is an euphemism for seclusion or the isolation room. Many survivors of forced psychiatric treatment report very traumatic experiences with the “quiet room”. Others find it helpful when they’re severely disturbed, because they can scream there. I have mixed experiences. When I was still on a locked unit, it was often used as a threat to “give me back my responsibility for my behavior”. Seclusion cannot legally be used in this way in the Netherlands; its only purpose can be to avert danger. Now that I’m on an open unit, however, I find sometimes when I’m in crisis that it helps to have me in seclusion for a while.

My #InvisibleFight for Mental Health #IIWK15

Today is the start of INvisible Illness Awareness Week. I already shared a post on ths year’s theme, my invisible fight, last week. This was about my fight for a correct diagnosis and treatment of my physical symptoms.

If all goes as planned, I will be participating in a 31-day writing challenge in October on the topic of mental health. I have lived with mental health problems pretty much all my life, though I didn’t get into the care system till 2007. In today’s post, I’m sharing my fight for proper mental health care.

I have had a number of diangoses for my mental health problems over the years. At first, in 2007, I was diagnosed with an adjustment disorder caused by the stress of my living independently while being multiply-dsabled. I was hospitalized on a locked psychiatric unit and stayed there for 1 1/2 years. An adjustment disorder can only persist for six months after the stressor has gone (so after I’d been hospitalized), so I had to be diagnosed with something else eventually. My new diagnosis was impulse control disorder nOS. Several years later, I got diagnosed with dissociative identity disorder (formerly known as multiple personality disorder) and post-traumatic stress disorder (PTSD). These finally got changed to borderline personality disorder in 2013.

It’s been a long fight to get the care I deserve and the fight is ongoing. In 2008, when on the locked unit, I was treated with seclusion or threatened seclusion whenever I acted even slightly irritable. I wasn’t told that, being an informally-admitted patient, I had to give consent for this treatment. My problems were treated like willful misbehavior, even though my diagnosis of impulse control disorder should suggest the behaviors were at least to an extent beyond my control.

I had a horribly authoritarian social worker at the time. She was mostly in charge of my care, because I was at this unit awaiting appropriate long-term residential care. At one point, when I objected to applying at a certain supported housing place because I didn’t meet half the admission criteria, she threatened to get me a guardian. Not that my parents, who would’ve been the most likely choice for guardianship, would’ve stood in the way of my making my own decisions. I have said many negative things about my parents, but one positive quality of theirs is that they allow me to be in charge of my own life.

I had to fight to be admitted to a resocialization unit in 2009. I first had to fight my social worker, who wanted to transfer me to a low-level supported housing placement instead. That was just too big a leap. I also had to fight the treatment team at the resocialization unit, who were skeptical I’d be able to cope on an open unit.

Once at the rsocialization unit, I got better treatment than I’d gotten at the locked unit. However, I didn’t get much better. Eventually, medicaiton was suggested. This was a huge step, as the doctor at the locked unit had always ignored my questions and suggestions about possibly going on medication. My antipsychotic is truly a lifesaver. Its dose had to be increased several times and an antidepressant had to be added, but now I’m quite stable.

In 2012, when I’d been diagnosed with dissociative identity disorder for some years but was noticing my psychologist didn’t have a clue how to treat it, I took it upon myself to find a suited therapist. I E-mailed around, was rejected many times, but eventually found someone. Unfortunately, by the time she had a spot for me, I’d transferred to my current institution and my diagnosis had just been changed to borderline personality disorder.

As the years passed, I got to know and love my husband and we eventually married in 2011. We originally weren’t planning on living together, but early this year, I changed my mind. We’ve been working towards discharge for me ever since. Thankfully, my psychologist and social worker are quite cooperative. The fight is not yet over. In fact, now that my discharge is coming closer being probably around three to six months away, I have to fight my inner demons. In other words, I have to fight the fear that I’ll break down again, like I did in 2007. Thankfully, my psychologist and social worker are understanding of this. I am hoping that, once I am settled in at my and my husband’s apartment, I can finally get treatment for my emotion regulation problems.

Everyday Gyaan

Also linking up to Invisible Illness Awareness Week 2015: Your Invisble Fight.

#HighFunctioningMeans I Can Hold It Together Until Finally I Can’t

I had been doing quite well mental health-wise for a few weeks. I was in fact doing so well that I was beginning to doubt anything is wrong with me. Maybe I don’t have autism and borderline personality disorder after all.

Then on Thursday, I started feeling a bit cranky. I thought I was coming down with the flu again, as many people seem to get it a second time around. The self-doubts also became worse. Maybe I am too “high-functioning” to be in an institution, like so many parents of “low-functioning” autistic children used to say when I still had stronger opinions on autism than I do now. Maybe I fake the whole of my mental illness and developmental disability.

Then on Friday night all came crashing down. I had this huge autistic, borderline meltdown. I ran off the ward with just socks on my feet not realizing it was too cold and rainy for not wearing shoes. I was actually very confused. When a few people came by, I called out for help, but they went on chatting and, I thought, filming me. I have never been truly psychotic, but psychotic-like symptoms are common with both some forms of autism and borderline personality disorder.

Long story short, after melting down more on the ward once the staff found me, I spent the night in seclusion. I don’t advocate forced seclusion on anyone who isn’t physically harming anyone, and I wasn’t at the time, but I was confused enough that I could physically harm myself. I went into seclusion voluntarily.

About a week ago, some autistic bloggers launched a hashtag on Twitter: #HighFunctioningMeans. They meant to raise awareness of what it is like to be (seen as) high-functioning but still be autistic. I would like to contribute to this hashtag with this post.

I don’t have meltdowns everyday. Not anymore since going on a high dose of an antipsychotic. Before I went on medication, a day without meltdowns was indeed a rarity. Though I don’t become physically aggressive towards other people anymore, I have broken a huge amount of objects and become self-injurious. I in fact have done all the things parents of “low-functioning” autistics say their child does while in a meltdown, including as a teen becoming physically aggressive towards people. Now that I’m an adult, I still hand-bite, head-bang, throw objects, run into the streets, etc.

I am not proud of these behaviors. I wouldn’t medicate myself with heavy duty medications if I were. I do advocate finding better treatments for autistic irritability. The reason I write this, however, is to demonstrate that those who appear to be “high-functioning” on the Internet, or even those who appear “high-functioning” when you first meet them, can be severely disturbed when eventually they can’t hold it together anymore.

Medicating Away for Autism: Dilemmas and Disillusions

A few weeks ago, I saw an old post on autism and medicating and what’s the dilemma being tweeted again. It got me thinking about my own journey on the path of the medication controversy.

I first learned about autism and medication from the likes of APANA (Autistic People Against Neuroleptic Abuse) and Autistics.org. It was communicated clearly on these sites that autistics should only take medications if the right supports are in place, they’re themselves suffering (as opposed to the parents suffering from the autistic’s behavior) and if the medication is not an antipsychotic. I took this information at face value. When I was myself diagnosed with autism, I became an enthusiastic autistic advocate. I was soon disillusioned.

When the option of medication was first mentioned to me, I was miserable. I had the right supports, although I was soon going to lose them due to moving into independent living. An antipsychotic wasn’t the first medication mentioned. But it was what I ultimatley ended up on. I wrote a blog post the next day about really well-informed consent. I wasn’t really aware of the fact that I had truly been mildly coerced into consenting and that 95% of the “really well-informed” bit came from my own Internet searching rather than the psychiatrist.

I quit my antipsychotic eventually when I realized it was being used as a substitute for proper care. I used the side effects as an excuse, but really I was still miserable, only just not miserable enough for increasing my supports. I was really fortunate that the psychiatrist who ended up admitting me to the hospital three weeks later, didn’t consider prescribing me the same antipsychotic, or any antipsychotic, again.

For years, I was without daily medication. I noticed how the use of PRN oxazepam was coerced, and I wasn’t going to go along with it – unless I was truly miserable. Or unless seclusion was touted as the only alternative.

In late 2009 and early 2010, I had the worst irritability I’d had in years. I knew that I might benefit from more support, but I also knew this wasn’t feasible, and my support was okay at least. So when my psychologist proposed I talk to the psychiatrist about medication, I consented. The psychiatrist gave me plenty of inforation, including many of his reasons for and against particular drugs (mood stabilizer vs. antipsychotic and if an antipsychotic, which one). He also gave me a week to think, and I consider the consent I gave this time for taking the antopsychotic Abilify to be really well-infomred.

My dose, however, had to be increased several times. I remember once telling the substitute psychiatrist, a much less considerate doctor than my regular psychiatrist, that I felt I needed more support, but I was bluntly told off and prescribed a higher dose of Abilify. Of course, legally I could’ve refused, but the irony of informal hospitalization is that you’re mde to believe you have a choice, only you don’t. I had, after all, been threatened with forced discharge if I didn’t consent to seclusion a few years prior, and this time, I didn’t even have a home to go back to, so what choice did I have?

For three years, I did fine on a moderate dose of Abilify. I did get a low dose of the antidepressant Celexa added, which forutnately never had to be increased. Then, in the summer of 2013, I moved to my current institution and soon found I had more meltdowns. I was threatened with the locked ward, in the kind of way where nurses don’t really mean it but just want to scare the crap out of you, so what choice did I have but get my Abilify increased again. And again?

I’m now at almost the highest dose of Abilify that can be prescribed, a five-fold increase from my original dose. I’m feeling really drugged up lately and in a kind of agitated state where I’m too drowsy to get out of bed yet feel irritable nonetheless. I’ve raised this issue with the staff and my psychologist several times, but nothing has come out of it.

Currently, I’m taking an antipsychotic to manage behavior that other people suffer more from than myself while I don’t have proper support. After all, proper support isn’t needed when you aren’t a pain in the neck of the staff, and when you are a pain in the neck, it’s all “attention-seeking” and “overreactivity” and they’ll treat you like crap until you’re begging for a PRN pill. Is this what Autism Daddy means? I’m assuming he wants the right support for his son, but he doesn’t care that other people are drugged up for a dentist’s appointment. Now I know that his son is more severely aggressive than I was when I gave my really well-informed consent to the original dose of Abilify, but I’m still worried.,/P>

As I wrote in my previous post, my psychologist considers medication to be a substitute for proper support. I disagree, but I’m afraid that I just got to go along with it, and the fact that I’m an informally admitted patient only makes this a little harder.

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.

Disciplining the Autistic Child

Many autistic people, if not all, exhibit challenging behavior, such as anger, aggression, obsessive-compulsive behaviors and sterotypical (self-stimulatory) behaviors. Whether and how you intervene with these behaviors, depends on their function. Autistic children exhibit normal childhood misbehavior too. For example, they may nag and tantrum when you won’t give them candy, refuse to tidy their room, or be rude. This behavior can be punished in the same ways that you would use for a same-age typical child, such as by time-out, loss of computer or TV time, etc. Take into account that some consequences may not work for your child. For example, an aloof autistic may find time-out comforting, and most autistics do not get non-verbal cues. Therefore, even with an older child, you need to say explicitly that you are disapproving of their behavior. You also need to make sure the autistic child understands what they are punished for. If they are rude, for example, explain what they said that was rude, how they can make amends, and what they need to do differently the next time. When sending a child to their room, onto the naughty chair, etc., make sure they understand when they can come back. I was often sent to my room and stayed there for hours because I didn’t know when it was okay to come back. Don’t tell a child to come back when they “can behave”. Instead, set a specific time or make concrete rules on what they must do to come back.

As I said, whether and how you intervene with your autistic child’s behavior, depends on its function. Often, a function is presumed based on typical chhild development. For example, suppose your child refuses to tidy their room. You assume they are defiant or lazy, but do they know how to tidy their room? Even if you’ve shown them before or they’ve helped, you cannot expect all autistics to know when or how to do their own tidying or cleaning. I remember when I went to live independently out of an independence training home, my support worker told my knew staff that I knew how to clean. I did, but I had no idea where to start in my new apartment. This may in part be due to blindness, but even as I became familiar with my apartment, I still didn’t know how to organize my cleaning.

Then there are those behaviors that are often due to autism, such as sensory overreactivity, self-stim, or meltdowns. Give yoru child a time and place to engage in self-stim or compulsions, of course with the premise that they won’t damage property or harm themself or others. In 2007, when I was diagnosed with autism, my diagnostician told me that I really needed to unlearn to twirl my hair. Indeed, my parents had told me countless times that I needed to stop this behavior. While it is true that it is annoying and distracting to others, autistics need to be allowed their time to stim. Home is where a child should be safe to be themself. When talking about self-stim and how annoying it is when it’s an autistic doing it, I often refer to a lecture I was going to in college prep. Two students were modeliing appropriate and inappropriate communication skills in their filed. One of them was constantly clicking his pen, and I was assuming at first that this was meant to be inappropriate. It wasn’t. My point is, neurotypical people stim too.

When an autistic person becomes aggressive, be it verbally or physically, you need to intervene. However, it is still important to recognize the function of the aggression. For example, if a child constantly screams or hits when there’s loud noise, screaming at them to stop, will make it worse. Time-out in a quiet place where the child can rage away may be the most appropriate intervention. I strongly disagree with locking up an aggressive person in their time-out area unless there is no other way (except for restraint) to get them to stop. Locking the child up should never be used as a threat or for punitive purposes, and I doubt its effectiveness for verbal aggression. That may be my blindness though, as verbal aggression to me is as scary if it happens in the locked room next door. As for restraint (physically holding the child down), that’s only okay if a person is physically aggressive towards people.

One important point I want to make to finish off: be mindful of your own feelings when handling your autistic child. The moment you start feeling powerlessness or feel you’re going to lose your temper, step back. My parents often lost their temper with me, and this usually only made the situation much worse. I won’t say that you can always feel calm when handling your autistic child’s behavior, but strong emotions can be best handled away from your likely already distressed child.

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.