ASAN New England Testimony on Aversives

Stephanie Lynn Keil reprinted the ASAN New England testimony on aversives, and I just have to link to it as well. It is very unfortunate that Sara Willig was unable to say what she wanted to say at the hearing. I hope her testimony comes to the eyes of legislators anyway. They need to know that the abuse occurring at the Judge Rotenberg Center and other institutions is counterproductive to treatment, harmful to the physical and mental health of people with disabilities, and a violation of their human rights. Restraints and seclusion should only be used in absolute emergency situations, where someone’s physical safety is in immediate danger, and there really is no alternative. (I’ve been meaning to write a post on staff perception of emergency and lack of alternatives re seclusion for awhile, but I’ve been in a very bad state lately so couldn’t get myself around to it.) Restraints, seclusion or aversives should not be used as “treatment” – they are not -, and should not be used as substitutes for proper care. Electric shock should, in my opinion, be banned, since it is a cruel and unusual punishment (yes, I know that part of the constitution applies to criminals, but I don’t see any reason why people with disabilities should have fewer human rights). Heck, I find it hard to believe this is even legal in the U.S.; in the Netherlands, the only legal reason to use electroshock is in electroconvulsive therapy for some treatment-resistant cases of depression, under strict conditions, and with as little discomfort to the patient as technically possible. It is about time U.S. lawmakers wake up and finally implement legislation seriously restricting the use of abusive “interventions”. And I’d hope they won’t use the soft-spoken, politically correct, open-ended mumbo-jumbo we have here regarding restraint and seclusion.

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Could Autism Be the Next Step in Human Evolution?

I stumbled upon a blog post by Jessica Ruvinsky autism as the next step in evolution. First of all, I want to say that I can’t stand what I call neurelitism, that is, the view that autistics are somehow superior to neurotypicals. This view dismisses the fact that autistics actually do have serious problems. Some of these believe that autism is the next stage in evolution. Really, if any autistic believes that they personally are the next step in human evolution, maybe they should consider getting fifteen children to make sure their genes get passed on. After all, if you don’t have children, you play absolutely no part in evolution at all.

Ruvinsky correctly states that there is no reason why any individual autistic should be the next step in evolution. Evolution, after all, doesn’t play on individuals, but on species. Genetic mutations happen spontaneously, and get passed on through the generations if people get children. Therefore, if people with one particular genetic mutation, are more likely to reproduce than others, it is likely that this mutation will increase in the population.

It is, however, highly questionable that autism is increasing at all, and if it is, that this could be some kind of mass genetic mutation. It is far more likely that autism diagnoses are increasing as a result of more awareness, broadened criteria and more people with the autistic neurology getting stuck in a rapidly complicating society (in western cultures at least). If the autistic neurology is truly increasing, it is far more plausible that environmental factors are at fault than genetic factors. Autism is far too complex a genetic construct to be able to have evolved spontaneously within the last, say, two or three decades. It is possible that, as a population, we are slowly getting more “geek genes”, which may in an increasing number of cases (due to diagnostic factors) be referred to as Asperger’s Syndrome or autism. But it is pretty much impossible that the genetic make-up of autism truly involved out of the blue since the 1980s.

There is one more premise behind the next step in evolution theory: autistics have a reproductive advantage. I honestly don’t see any reason to believe this. Even people with mild forms of autism are statistically less likely than NTs to be in intimate relationships. I don’t know how they magically get all these children that will account for an evolutionary leap, somehow, in the course of many generations. Of course, it is possible that some genes that occur in autistics are reproductively advantageous – I don’t know which or why, but it is possible -, but I don’t see any reason why the complex genetic make-up of autism should be in any way advantageous in evolution. And even if it were, at some point, in so many centuries, that is not a reason to start calling autistics the next step in evolution now.

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It’s Not All About Autism “Core Symptoms”

I have never taken the DSM, the Bible of psychiatry, to be God’s word on mental disorders. I know that it is created by a group of mostly white, male, American psychiatrists who may even have voted on controversies. I also know that, even if these white, male, American psychiatrists had been the world’s most reknowned experts in psychiatry, they certainly were not the world’s top experts in all related fields which study people with mental disorders (neurology, psychology, etc.), and which are nonetheless influenced by the DSM. Therefore, I have absolutely no reason to take what the DSM says about a given disorder, to be the full and only possible truth about that disorder.

In my own case, my relationship with the DSM-IV criteria of my diagnosis, Asperger’s Syndrome, is quite complex. I need the DSM for my diagnosis, so someone needs to check that I meet enough of the criteria specified there. A psychiatry resident with her supervising psychiatrist and a psychologist have done so, in two different evaluations in 2007, and to my knowledge their findings have not been questioned since the second evaluation. I do not dispute the fact that I meet enough so-called “core symptoms” for a diagnosis, but I do dispute the fact that these are actually core symptoms for me. And before someone jumps up to tell me that I’m a fake autistic after all and I admit it: lack of communication is one possible core symptom of autistic disorder, but self-injurious behavior and lack of self-care skills, are not. In fact, severely intellectually disabled autistics are often unable to display many of the core symptoms as specified in DSM-IV, but would you consider them nonautistic because of that? I won’t.

I understand the need for the so-called “core symptoms” of autism spectrum disorders to be in the DSM. The DSM, after all, makes the pretense to objectify the characteristics of mental disorders, rather than conceptualizing them. Therefore, underlying developmental, neurological or psychological principles are not discussed. We don’t know what happens to the DSM if genetics emerge, but for now, all that is in the DSM, are behavioral characteristics. (Wondering: will Rett Syndrome be removed from DSM-V now that the gene has been found? I don’t see why it is any more a psychiatric disorder than, say, Fragile X Syndrome.) Therefore, it is unlikely that we’ll ever find “executive functioning”, “sensory processing” or “theory of mind” in the DSM criteria of autism. These cannot be objectified, after all. But does that mean these underlying mechanisms cannot cause problems beyond the “core symptoms”?

I am often troubled when I face a problem in my daily life that is not a strict autism core symptom. Some of my problems are autism core symptoms, but much more complex than the average interpretation of DSM-IV jargon would have you believe. For example, my social impairment has long passed the point of not knowing that you’re supposed to wait in line in stores and greet familiar people on the streets (I was at that point when I was a teenager though). That doesn’t mean I never have trouble with these, but not for lack of social awareness. It also doesn’t mean I don’t have trouble with social awareness. In fact, I misunderstand quite a few social situations and it causes quite a few problems, but I can’t come up with the words to explain now. As for the other “core feature”, repetitiveness: I have stims and special interests and trouble when my plans are altered, but I don’t have rigid routines. In fact, I wish I did sometimes, because the fact that I don’t, leads me to be quite disorganized. This feature may be absent in very “low-functioning” autistics, apart from the stims, because they lack the cognitive skills to pursue a special interest or follow a routine.

But I’ve lost my track. I was really not planning on “diagnosing” myself according to the DSM, because they weren’t the “core symptoms” I wanted to write about. Rather, I was going to write about the other possible symptoms of autism, that emerge from the same psychological or neurological deficits theorized to play a role in autism, but that haven’t made it into DSM criteria and therefore are unlikely to be taken into account when someone’s “severity” (a new feature in DSM-V) is going to be evaluated. I’m referring here to sensory issues, self-injurious behavior, self-care difficulties, anxiety, sleep problems, etc. None of these are in the DSM-IV criteria for autism, but every autism parent and a large number of autistic adults contend they are part of autism. With some of these, the DSM-IV has something in the criteria of said disorder along the lines of “The symptoms don’t occur exclusively during the course of a pervasive developmental disorder”. But that doesn’t make these symptoms “core features”. Despite the fact that they haven’t made it into the DSM-IV, however, they can often be still quite disabling.

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What Makes Us “Institutionalized”?

Institutionalization, in the context of this post, refers to the overreliance on the institutional structure, that some mental patients are described as displaying, and which is often viewed as a problem by the staff. Cellar_Door of “Not Another Nursing Student Blog…” describes it here and uses two seemingly strange examples, where patients start protesting when the institutional structure is bent in their favor.

I tend to be annoyed when a staff member refers patients as “institutionalized”. The reason it annoys me, is that “institutionalization” is seen in this context to be a problem on the part of the patient, as if there is something intrinsic in them that causes them to be overly dependent on external control. In some cases, this is of course possible, but then it is quite possible that this patient would’ve displayed the same rigid behavior at home. Why is it not called “institutionalization” if someone has the exact same routine everyday and is troubled when its’changed, when that person lives at home? The simple answer is that in that case, the person doesn’t live in an institution.

I find it ironic, in a way, that many acutely mentally ill people, when first hospitalized, are subjected to a rigid daily routine, because they “need structure”, even if they didn’t have any routines at home (and this may’ve contributed to them being in a bad state). But then once the people are no longer acutely ill, reliance on the routines that you were taught were critical, is called “institutionalization”, and you may be forced into flexibility (on the staff’s terms, of course) as a way to “rehabilitate” you.

I can’t help but laugh at the total uselessness of measures that aim to prevent “institutionalization” given the institution framework. An example: at my former ward, eveyrone was kicked out of bed at 8:30 AM. Well, good thing, if you want to stay in the habit of getting up early to go to work, school or day activities. Recreational therapy started at 9:30, so it wasn’t like you had absolutely no reason to get up. But that was about as far as our fabulous keeping in the habit went: we had only one hour of recreation a day, so by 10:30, you were done and could be drinking coffee (at fixed times, of coruse!), smoking, doing nothing or sleeping for the rest of the day. Honestly I don’t see how this helps people stay in any habit: if you go to bed at 10:30 AM, it isn’t like you’ll keep a regular sleep-wake cycle, no matter how often you’re kicked out of bed at 8:30. I know that some hospitals lock people out of their rooms during the day (thank God mine didn’t, cause my room was the only place I could be writing without being disturbed), but if the patients have nothing to do, how will this help prevent passivity? I may be the exception here, but I for one have absolutely no problem getting up on time when I have something to do. On the other hand, I am also the one who will *never* get up at 8:30 just for the sake of it.

Fixed coffee times, meal times, TV times, in some secure units even cigarette times, etc. also weren’t created by the patients. Some patients may find them somewhat useful, like me, but most people I’ve known actually don’t. So when these people have been in the institution for a certain time, and have become accustomed to the idea that coffee is served at 8:00 PM, why is it suddenly their problem if they protest when you get coffee ready at 7:30? In short, isn’t it ironic that deviating from the strict institution structure is okay (even to be appreciated) when a staff says so but “of course” not when the patient wants to deviate? Now that is what I’d really call institutionalization.

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Euthanasia and the “Burden Meme”

I just found out that a man suffering from cancer killed his demented wife and then himself to prevent her from being a “burden” on their children after his death. Wesley J. Smith comments on the case over at Secondhand Smoke. He writes:

The message that it is worse to be a burden than dead is being broadcast and received–and stories like this tragedy, I believe, are a direct consequence. It’s a very scary time to be old, disabled, or needing care.

That sounds dramatic. Too dramatic, in my experience of being a person with disabilities. It isn’t like every nursing home or institution resident is greeted by a nurse: “Oh, you want me to change your diaper? I’ll gladly do so if you take your [deadly] pill first.” That sounds ridiculous, and it is. This is why I become angry when pro-life activists, including Smith, say that the Netherlands have become a “nazi” country. The ridiculous statement I just made is among the things the nazis did to their disabled people, and it is not what happens anywhere in the world, and if it did, people everywhere would call for harsh legal penalties. Yes, including in the Netherlands.

But this is not what worries me about the “burden meme”. The changes in practice that are likely to spring from this cultural shift, are likely much more subtle. There have already been cases where insurance would pay for euthanasia, but not for (expensive) treatments that could save the person’s life. This may get worse as our medical knowledge increases and we are more able to keep people alive, at a higher cost to society. It is, after all, a fact that disabled and elderly people are expensive if they need care.

Expensive. Even without any reference to euthanasia or even being a burden, the system already makes it quite clear that elderly and disabled people are expensive. This expense is the reason not eveyrone goes into a care home anymore when they’ve reached the age of 65. Rightfully so, in my opinion, but it now goes farther than it should go. People receiving long-term care, especially those who aren’t supposed to fall within the groups it was “originally intended for”, are often classified as “expensive”. Long-term care was “originally intended” for people with severe developmental and physical disabilities or advanced demtnia. I am, therefore, one of these “expensive” people the long-term care system wasn’t “originally intended for”. I know what my former locked ward placement cost, because my insurance company paid the first year and sent me a transcirpt of the healthcare services it’d paid for (so that it could tell me that I had to pay them E155 in deductible, LOL). People with terminal illness are also judged to be “expensive”, as it used to be quite hard for them to get funding for palliative care beyond I think either three or six months, should they unexpectedly survive this long. Yes, I know that medically speaking, they wouldn’t have been considered terminal in that case, but so far, doctors are not able to predict the exact date someone will die unless they choose euthanasia. Fortunately, that legal loophole was fixed, so people with incurable cancer are not forced to get euthanasia once their funding runs out.

Of course, there are sitll people who refuse to accept services that do exist. We do not know what happens to services for demented people in the UK in the future, but the wife in the news story could’ve gotten home care if her husband wanted it. This is where being a burden in other than financial was comes in: people with severe illnesses are an emotional burden on their families, supposedly. With the fact that, even if professional care was accepted, the husband would’ve been expected to help unless he obviously couldn’t due to his cancer (at least in the Netherlands), it is unlikely that the “burden” wouldn’t exist if the husband just accepted help.

Besides, even if the wife were able to get all the home care she needed, it is currently considered significantly burdensome to watch someone else suffer. I guess in this sense euthanasia is what exclusion was in the times of leprosy-stricken beggars and institutionalization was in the times of, well, mass institutionalization. Maybe these were the results of the “burden meme” back in the day.

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Should Forensic Psychiatric Inmates Have Sex?

Today, a new documentary film came out, entitled Longstay. Longstay refers to long-term care units in forensic psychiatric institutions, where criminals with severe, chronic mental illness are detained, sometimes for life. The film stirred controversy, because it asks the question whether inmates of longstay units should be offered visits from a sex care worker, ie. a prostitute who offers her services to people in the care system. For your information, prostitution is legal in the Netherlands, so that is not an issue.

The main concern in this situation is of course the question of safety. How will the sex care worker be protected from potential harm done by someone with a history of serious crime and a severe mental illness? After all, the reason these people are in longstay, is that they are judged to pose a threat to society. However, if you look at it that way, how is the safety of the institution staff guaranteed? It isn’t like all people who committed a serious crime and have a severe mental illness, are at risk of sexually offending someone, and if they are, there is no reason they should be waiting for a prostitute. You might theorize that being permitted to have sex, would reinforce some people’s sexually inappropriate behavior. However, for some others, *not* being permitted to have sex for maybe several decades, may worsen sexually inappropriate desires and fantasies, and thereby increase the risk of inappropriate sexual activity. Besides, if you think that currently inmates on these units don’t have sex, you’re dead wrong. My inclination is that a sex care worker is more able to set boundaries than a fellow inmate.

I don’t think that everyone should be permitted to have a prostitute come over to them. After all, you wouldn’t want to have it happen that a convicted sex offender, whose staff knew that he had active sexual fantasies/desires that were inappropriate and that he might act on, ended up raping a sex care worker during the visit, because staff felt the sex worker’s safety was less important than the offender’s right to have sex. But then again, as I said, not all convicted criminals (not just sex offenders) with a serious mental illness are at risk of sexual offence. Whether the sex care worker’s safety can be ascertained to an acceptable degree, should be decided on an individual case basis.

Professor of forensic psychology Corine de Ruiter commented on the issue that having a prostitute come over would also be harmful to the inmate. The arguments she used, however, were quite bizarre: she explained about inmates who had been subjected to sex with a stranger as part of their treatment, so-called “intimacy therapy”. Now I might hope the inmate gave consent for this “treatment”, but even so it is quite different. It just isn’t the same when you have sex as part of “therapy” than when you have sex for the pleasure of it. Besides, “intimacy therapy” is provided to people with sexual disorders, most of whom sexual offenders. If they end up with a sexual addiction from the “therapy”, as De Ruiter claims, it isn’t certain whether they were at-risk sex addicts to begin with.

A last concern raised involves the fact that the sex care workers coming to these institutions, would be paid from tax euros. However, prostitutes have been coming into prisons to have sex with inmates for years, and I wouldn’t know what else they were paid from than taxpayer money. You may disagree with that, but if you don’t, I can see no reason to oppose taxpayer funding for prostitutes to come to longstay units. In fact, I personally object more to prostitutes coming to prisons – which are supposed to have in part a punitive function -, than to longstay units, which serve to protect society from severely mentally ill criminals. By the way, how have these prisons solved the safety issue? After all, there is no reason to assume that prison inmates are not at risk of harming prostitutes.

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Who Decides What “Quality of Life” Means?

Over the last few days, I’ve come across a few blog posts on the subject of quality of life, as it relates to euthanasia and assisted suicide. Note here, that my opinion about assisted suicide and euthanasia is not based on some kind of mantra that says that everyone has an obligation to live until “God” decides their time has come. I think that we have as little right to decide for someone else that they must live, as we have to decide for someone else that they must die. And this is exactly where euthanasia and assisted suicide become troubling: how can we be sure that people dying are not being coerced in any way into making that decision? Pro-euthanasia groups, in fact, sometimes advertise euthanasia as a way of giving family members the “gift” of no longer being a burden. Well, in all blunt honesty: euthanasia is about an individual’s *right* to die and it should stay that way. How much of a “burden” that person is, should not matter.

It gets more troubling when euthanasia on children is concerned, because children cannot make medical decisions independently. In the Netherlands, euthanasia on children under twelve has been legal since 2006 under the “Groningen protocol”. I will not doubt that parents know their children best – and certainly better than any kind of pro-life or disability rights organization or individual who has never met the child. I will also not doubt that the parents who have so far had their children euthanized under the Groningen protocol, loved these children deeply. But is love and “knowing best” enough to decide for someone else that they should die? After all, it is quite likely that the children were quite a burden on their parents, because all of them have serious disabilities or illnesses. Can we be sure that the parents really make a judgment about their child’s quality of life, rather than their own? And since we cannot be sure about this – in fact, quite likely, the parents’ own quality of life will play a significant role in their decision -, can you really say that a child under age twelve “has nothing to want”, as my father once said about severely disabled children?

But it gets more troubling. Who decides what is “quality of life”, anyway? Quality of life can be defined in two separate but related ways: someone’s subjective reporting when asked to judge their quality of life, which can depend on whatever the individual person considers determines this, and the more objective measurement of quality of life with (standardized) questionnaires, that measure whatever the creator of the quesitonnaire considers determines quality of life.

The people who “invented” the concept of quality of life, and who mostly decide what it is, are not individuals with disabilities or even their parents. They are healthcare professionals and scientists. Now I have nothing against healthcare professionals or scientists, except that the majority does not have significant disabilities or illnesses. I’m not even sure whether the creators of quality of life questionnaires, even asked the input of people with the disabilities and illnesses they were going to use the questionnaires on. Quite likely, the people who desinged the Expanded Disability Status Scale (EDSS) never asked people with multiple sclerosis which of their symptoms most disabled them. Not surprising that we now have a scale that relies heavily on the ability to walk, notwithstanding the fact that using a wheelchair usually provides a huge amount of freedom.

So what do professionals who decide what determines “quality of life”, base their decisions on, if not the input of people with disabilities and illnesses? My inclination is that many rely heavily on the things they themselves consider to give value to their lives. For example, in the debate over whether preemies below 25 weeks gestation should be resuscitated, both sides throw in IQ. The pro-resuscitation side says: “But some people will have an IQ far above 100 and will later go to university.” The anti-resuscitation side responds: “But there are also people who will have severe cognitive disabilities and will be institutionalized by their teens or early twenties.” Now of course outcome isn’t black-or-white and you can’t tell which individual preemie will fall off on which end of the outcome fence twenty years from now anyway, so I’ve never understood what sense this statistical calculation of life and death makes. But even if there were a way to determine a preemie’s future IQ with relatively high certainty, or when we’re talking about children who are older and whose IQ can already be measured, it still makes little sense to relate quality of life (and from there on, euthanazibility) directly to IQ. From the doctor’s point of view, it may, in the sense that he would not have had his job if he didn’t have his high IQ (presuming he considers his job enriching and contributing to his quality of life). But for an individual child, there are many other variables that influence a child’s quality of life. For example, the family’s attitude towards the child’s disabilities can make a huge difference. Same for the school’s attitude. Access to medical care makes a difference. So does the family’s support network (both professional and social). Individual factors will also contribute: I was annoyed when a pro-resuscitation doctor once brushed off behavior problems in children with normal IQs as “annoying”. As a side note on this, access to mental health services for the child and/or family, if needed, of course. These are all circumstances that vary considerably, and which are entirely unrelated to a child’s level of cognitive functioning. None of these are medical factors (no, access to healthcare is *not* a medical factor, it’s a social factor!). Very few of the outcome measures doctors use, can actually be linked directly to a medical factor. For example, high school graduation could be related to IQ, but a highly-intelligent person living in a poor neighborhood, is quite likely to be undereducated, while a child with a lower IQ may attain a higher academic level due to his parents being able to send him to the best private schools.

Now remember what is at stake here: the child’s life. Children who are said to have a poor “quality of life”, whatever that may be and however it may be determined, are euthanized, one might hope with parental consent. If the child is a premature infant, they’re simply left to die, without parental consent often. The reasons they are better off dead, are determined by doctors and other healthcare professionals who most likely don’t have any of the disabilities they consider so seriously incompatible with a meaningful life that they’ll approve the children’s euthanasia (or in many cases even participate in it). Many are also not parents of disabled children, so even if these can be said to advocate for their children even in such serious matters as the child’s “right” to die, doctors often don’t know what it’s like. If a parent doesn’t mind raising a child with severe disabilities, their preemie of 24 weeks will still not be resuscitated due to, well, what? The cost to society should this child end up with a severe cognitive disability and indeed be institutionalized, maybe? I think it’s ironic that healthy, non-disabled doctors judge the quality of life of people with disabilities they haven’t had either first-hand or second-hand experience with.

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Proper Care Isn’t “Sitting on Patients”

People are locked up in isolation rooms, restrained, or otherwise severely restricted in their freedom of movement, on a daily basis. A study a few months ago found that, in the Netherlands, between 2004 and 2008, about 150 people have been secluded for a year or longer at a time. For comparison: our country has 16 million residents, and we have about 8,000 Mental Health Act treatment/long-stay orders and the same number of assessment orders each year. This doesn’t count the people locked up for a while only to be isolated again a short while later, or those locked up for months but not yet a year. One such case, which was widely covered in the media in 2008, involved Alex, a severely autistic man in his forties who had at the time the media was alerted, been isolated for over half a year. Alex had been living in a workhome (residential combined working-living placement for autistics) for twelve years, when changes to staffing and client population made him uncomfortable. He started displaying increasing irritability, screaming, damaging objects, etc. He was locked up in an isolation room at his Groningen area institution for several months. At first, he was “mobilized” (let out of the isolation room for short periods) every now and then to go on a walk with a staff member, but after a while, he was secluded 24/7. His staff didn’t want it this way, so they proposed he be transferred to an Amsterdam observation clinic, believing he’d get better care there. As soon as he arrived there, he was, however, put right into the isolation room, remaining there for another several months until his famly alerted the media. He was never formally observed until a Member of Parliament started asking questions, at which point he was let out of the isolation room and actually being observed. We weren’t informed what that observation was supposed to be for or whether it has lead to any constructive intervention plans, and if so, whether these plans have been followed through with, but it looked that his family was eventually relatively content (or of course they were shut up by the clinic).

This story emerged amidst a number of horrifying isolation room stories that made it into the media in the fall of 2008, among them two people dying at another Amsterdam clinic. Some politicians called for the abolishment of isolation rooms. At that point, a well-known psychiatrist spoke up in the media: isolation rooms would still be necessary even if large amounts of funding were pumped into extra staffing, cause “you can’t sit on people to prevent them from self-harming, can you?” Well, I have neither been isolated (time-out rooms are different from isolation rooms), nor been restrained, but indeed, I would say isolation seems better (moreover because restraint is here almost always combined with isolation or time-out). But this reasoning would only be useful if all patients currently locked up in isolation rooms, could actually only be prevented from self-harming by being “sat on” (ie. restraint). This is entirely incorrect, not only because actual attempted serious self-harm or aggression is not the only reason, or even the most frequently used reason, for isolation, but also because people are usually isolated for a far longer time than they are actually threatening.

What does it mean when a psychiatrist says that there is no alternative to isolation? Quite likely, it means that there is no alternative, within the limits of the current situation on the ward that psychiatrist works at or the wards he knows of, that is as cheap, convenient to the staff, and will “fix” the problem behavior as quickly as isolation supposedly would (except for maybe restraint). I don’t know what type of ward that psychiatrist works at, if any (he was speaking on behalf of a professional association), but I have already stated many times that the care provided at the majority of wards, does not allow for such a black-and-white reasoning at all. Indeed, if there’s a ward with 24 people with developmental disabilities and severe self-injurious/aggressive behavior (and I know of such a ward, its director voluntarily participated in a TV documentary), and there are only three or four staff members on each shift, it is impossible to “sit on” a threatening patient, but the reason has nothing to do with ethics. I don’t know what the staff/patient ratio at Alex’s Amsterdam observation ward (or his workhome for that matter) was, but if it’s anywhere like this or even if it’s a little better, it is unlikely that he will be able to be observed at all. But if this is the case, it isn’t anything about Alex that made him “unobservable”.

Besides this quantitative lack of care on most wards, how qualified is the care, really? For example, is anyone on that observation ward Alex was sent to, trained in functional behavioral assessments? I doubt it, since this is not something psychiatric nurses get trained in, and a psychologist can’t go over to the ward to observe the patients on a regular basis. (When a psychologist once mentioned this during a treatment plan meeting of mine, I was probably the only person in the room who knew what he was talking about.) Maybe there are more staff trained in this method on developmental disabilities wards (Alex lived in a psychiatric institution), but I’m not sure. It is easy to blame the patients for their “random” aggression or self-injury (hint: if aggression/self-injury is truly random, have medical causes been ruled out?), but if you were only able to collect random data due to being too busy on an understaffed ward with all the bureaucratic requirements set forth to increase paper tiger “quality”, or due to your lack of training in standardized obsevation methods like FBAs, how would you expect to find anything useful?

And if, by magic, a patient’s behavioral assessment did meet the standards, is the plan developed on the basis of that assessment, going to be followed through? Most likely not, because staff shortage, unqualified staffing, an environment that cannot be controlled to meet the individual’s needs, etc., will again mean the patient doesn’t receive proper support. It doesn’t matter that appropriate support would prevent or significantly reduce acting-out behavior, since the patient has to be molded into the sytem somehow.

I know, again, that this is the way it is now. I know we can’t change it overnight. But I also know that if we accept the reality as it is now, we will be stuck forever with people with severe disabilities (not just autism, but other developmental and psychiatric disabilities) in isolation rooms for over a year. It isn’t like more and better qualified staff could only be used to sit on patients – if that were the case, we could pull out a can of managers and bureaucrats to do that job instead of writing thousands of quality paper tigers. What quality are they writing about anyway? Not quality of care if you ask me.

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Is Institutionalization Necessary?

Stephanie Lynn Keil commented on my previous post at her own blog. The issue she raises is the one I failed to address properly in that post: whether you’d actually rather starve or be institutionalized. Stephanie writes that she’d rather starve. It is not something that surprises me. In fact, I’d not be surprised if some of the autistics who may starve from lack of services, agree (I never asked, so I don’t know). But should these really be the options?

Stephanie correctly points out that the U.S. healthcare system isn’t the same as the Dutch system, because ours is socialized. This means that healthcare is available to everyone here regardless of income, while in the U.S., many people are uninsured and therefore don’t get even the most basic healthcare services. Even if U.S. residents are insured, it is quite possible that mental health services will not be covered, or not to the same extent as somatic services. (What happened to the Mental Health Parity Act? Did it actually pass?) Waiting lists, at least for outpatient assessment and treatment, are much longer there than they are here. I don’t know about the waiting lists for inpatient treatmenr or long-term residential care in the U.S., so I can’t compare those to our waiting lists. When people are a danger to themselves or others, it is quite likely that they will be warehoused in state institutions, which I’ll eagerly believe provide poor care. Since I’ve never been to one, I can’t make a comparison to our institutions again, but it would be not at all surprising to me if it’s worse there than here. In short, I can imagine that someone would rather starve than have to live there.

However, this state of being caught between a rock and a hard place, only exists on the presumption that institutionalization is necessary and that the quality (or lack thereof) of care delivered, is a given. Stephanie opposes institutionalization. So do I, and so does every autistic I know who could starve from lack of services (FYI: all live in countries other than the Netherlands, so I don’t know their healthcare systems). This is not a matter of I thinking I, or anyone else, is too good for an institution, or somehow has whatever capacities it takes to be “allowed” in the community if the community would just see how oh so capable we are. I, for one, am not capable enough to live in the community (at least, not now) within the limits of the way my country’s system works. But that doesn’t mean the system is right.

It isn’t like, if you need 24-hour supervision for medical reasons, you should have to choose between dying of your medical condition or being warehoused in a large institution where you could die anyway, because you’re not getting nearly the amount of care you need. It isn’t like, if you’re starving because you can’t prepare a meal, remember to eat or even feel when you’re hungry, your choice should be between starvation and being trapped in a state institution, where you could die from abuse or neglect. It is a false dilemma. Oh well, that is, it should be. So why can’t we all get together and fight for disabled people’s – all disabled people, including those with the most severe disabilities – right to individualized care?

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People May Starve

There’s a comment on this post, which raises an unrelated but valid concern – why is ASAN not campaigning actively against the bullying of autistics (or why do autism advocates not see it?)? -, that upset me to a significant degree. This is not meant as an attack on Stephanie Lynn Keril, who posted the comment, since the incorrect and potentially harmful belief stated here is pretty prevalent among autism advocates and, I think, also among certain subgroups of the neurodiversity moveement. Referring to autistics who (presumably!) can drive, work, have friends, and live in their own apartments but who forget to eat if they don’t have someone to remind them, she asks:

Which would you rather have: a job, a car, an apartment, friends and sometimes forget to eat and live in a messy apartment or live in an institution, self-mutilate, have trouble communicating but have shelter and food?

I will not go into the incorrect assumption that everyone who has a job, car, friends and apartment cannot possibly have trouble communicating or self-mutilate here. Suffice it to say that, just because Stephanie doesn’t know anyone who has all these and still self-mutilates and has problems with communication, or she dismisses the people she knows via the Internet who are like that, doesn’t mean these people don’t exist. But even if this assumption were correct, I still wouldn’t be able to go along with Stephanie’s obvious suggestion that going without food is better than being institutionalized. You know, starvation kills.

It isn’t like there is any reason to trivialize autistics’ problems remembering to eat. Going without food for a few days may not be a big problem, but going without food for a month or longer, certainly is. With fluid, you may die if you go a week without it (or sooner if you have pre-existing medical conditions). I know autistics who have almost starved, and at least one autistic who acquired severe kidney damage from forgetting to drink enough fluids. I don’t personally know autistics who have actually died of starvation or dehydration, but that is more likely due to the fact that I don’t know every autistic, than that they don’t exist. Does sereious damage or death only matter if it comes from self-harm?

And here is what angers me most: it is the incorrect assumption that an autistic who has a job (and you don’t know what accommodations that person gets for their communicative disabilities, cause you assume they can’t possibly have them) or lives in their own apartment, cannot possibly have trouble with nutrition or self-care, that allows these people to remain without services, sometimes even if they’re starving. It is the incorrect assumption that someone cannot forget to eat for more than a few days, that causes people to think it mustn’t really be this bad. How many so-called “high-functioning” autistics must die or acquire serious, permanent damage to their bodies before people stop assuming our cars, jobs or apartments (presuming we have them) mean we don’t have problems and therefore don’t need help?

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