Residential Setting vs. Institutional Mindset

After posting my previous post, I thought some clarification of definitions is in order, before anyone jumps upon me saying that I advocate large-scale abuse of autistic individuals. I don’t. When I said some autistics may want to live in residential facilities, I meant that some autistics might prefer the living arrangement of a residential facility, rather than the power dynamic – which, in my opinion, is not inherent to residential care and not specific to residential settings.

In the Netherlands, a residential facility is any facility that is funded as one. Supported housing accommodations, by this definition, are residential regardless of their location or size. My former training home, which was located in the community and housed only seven residents, was residential by this definition. Every country has different definitions in this regard. For this reason, I shall use a narrower definition, that a residential facility is a large, segregated facility for people with disabilities or the elderly.

Now both the segregated nature and the size of residential care facilities are sometimes thought of as problematic, especially when people are forcibly put into these settings. However, it is quite possible that some people would prefer to live with a large number of people with the same condition, away from the community. If something like this is set up by people with disabilities, it is called an intentional community, and no-one says that people are not allowed to plan such a thing. So, if someone wants to live in a large, segregated setting, that is not necessarily bad in itself. The problem with residential care is that people are forced into it through cost effectiveness and other nonsensical reasoning.

Beside this is the institutional power dynamic, common but not universal in residential care but also common in any other care setting. Institutional power dynamics are only in part related to the type of facility – for example, it is more likely to be secluded in a psychiatric hospital than in a supported living facility for the mentally ill, because more psychiatirc hospitals have seclusion facilities. In other ways, carers can exercise and abuse power over patients in home care, supported living, or any other form of less restrictive care, and this control can go beyond that exercised at some residential facilities.

Here are a few reasons my own institution – a large, segregated, psychiatric hospital -, is not always considered a “real” institution:

• The doors, at least on my ward, are not locked during the day.
• I can go on leave for up to three days when I want, and am even allowed to leave the country during this time. One woman on my ward was even exceptionally permitted to go on vacation to a different country for two weeks. Note that I am privileged because I am an informal patient; involuntarily committed patients need permission to leave and can’t leave for more than 60 hours.
• I have access to my own money and paperwork. Note that not all patients do.
• I have access to a computer.

There are probably a hell of a lot more things I could think of. Most of these things are considered privileges, when in ordinary society they would be rights – the computer would be the exception, cause that’s a privilege everywhere -, but the fact that I can exercise these privileges, to some people proves this is not an institution. Here, “institution” is equated with institutional power dynamics, and I am told that I don’t have it as bad as some people in residential care. As if I even said that.

Now my former ward, which was a lot more restrictive, and which was riddled with institution power dynamics, was more community-based in location than my current ward. In some ways, my former training home can even be said to have been more restrictive than my current ward, while as I said it was community-based and small, and everyone even had their own apartment. That is not an institution, right?

Now when I say I don’t have a probem with residential care facilities, I am referring to the settings, and only if people with disabilities prefer to live there over the community. I am not referring to institutional mindsets and power dynamics. These often pervade every aspect of care, and they shouldn’t. Abuse, control and lack of civil rights can be found in every type of care, and they are not acceptable.

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Calling for Adult Autism Services

Harold L. Doherty of Facing Autism in New Brunswick has written an open letter to the NB government on behalf of caregivers of autistic children and adults, calling on the government to establsih more residential care facilities for autistic adults.

Now I could start a rant on how it is community services that we need, on how no-one should be forced into an institution, no matter how severely disabled they are. This is true, but, through two and a half years in an institution, I have learned that some people may actually prefer to live there, and, for some people, such an environment is in the best interest. This is not to say I advocate forced institutionalization, or that I think the cost effectivenss meme should further erode community-based services for those deemed “too expensive” for them. I, however, advocate for care in a setting the person with disabilities wants to live in. And some actually want to live in residential care.

Of course, if Doherty believes that residential care should replace existing community services, I disagree. Every person who wants to live in the community, after all, should be enabled to. I also would’ve wished Harold had advocated for a broader range of services, including home care programs for autistic adults who want to live with family members or alone, but whose family can no longer provide care due to, for example, being elderly. Maybe it is time that everyone interested in autism services, gets together to advocate for individualized programming for all adults with autism spectrum disorders, regardless of severity of their disability. This may include residential care for some, but it should also include home services and community-based supported housing. I am planning to revive my Dutch healthcare blog, and maybe I can start it with a call on the Dutch government, which, in my opinion, is letting down a number of autistic adults who are falling between the cracks in the long-term care system.

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My Binarist Perception of Genderqueer People

Once again, an encounter in the blogosphere makes me aware of my own privilege and prejudice. This time, it involves gender. Specifically, I noticed how, despite my notion that I do not believe in the gender binary, I tend to perceive people as either male or female.

I became aware of this when I stumbled across shiva of Biodiverse Resistance. Despite knowing that they are genderqueer – shiva, if you prefer a different third-person pronoun, let me know -, I always perceived them as more or less female due to their interest in feminism. Then, when I foudnd out they have a Twitter account, I went over to check it out, and was surprised to see they use a male name there. Apparently, in my perception, feminists are always female and genderqueer people for whatever reason always confom to the gender binary somehow. This is not a conscious belief – I like to believe I am very accepting of gender variance -, but it reflects itself in my encounter of nonconformity to traditional gender norms.

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Autistic Teen Charged with Assault, Disorderly Conduct

Via Terri over at Barriers, Brigdes and Books comes news that an autistic teen was charged with assault and disorderly conduct a few weeks ago, after he became physically aggressive when there were four fire drills in one morning at his school. We do not know whether an appropriate behavior intervention plan was in place, as should have been the case. As Terri comments:

I don’t know the reason the charges haven’t been dropped, but I fear it’s for the old familiar reasons: that there are people who think that people who hit people get charged… and things like ‘he just has to learn…’ etc. I imagine some folks saying, as someone often does, the community/school/whomever is not equipped to deal with these situations.

The answer to not being equipped is becoming equipped, of course.

Terri believes a court date has been set for this Tuesday, April 27.

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Asperger’s Syndrome and Serial Killers

Michael Fitzgerald, a scientist in the field of autism, has a new book published: Young, Violent, and Dangerous to Know. I haven’t read the book, but, according to the description, Fitzgerald proposes a new subdiagnosis of Asperger’s Syndrome that is typical of serial killers.

Now serial killers are a small group of criminals. It is rather intuitive to consider most of them as having at least some serious psychopathic disorder, if you can call a flaw of moral development a mental disorder at all. If the majority of serial killers have an empathy deficit, and if we decide that empathy deficit is a mental disorder, then it is all fine with me to diagnose that majority of serial killers (but not serial killers by definition!) with that disorder.

It is also fine with me, if there is any evidence to support it, that what I shall call empathy deficit disorder will be classified as a subdiagnosis of Asperger’s. I can’t see the evidence here, given how Asperger’s Syndrome as it is conceptualized today is a developmental disability rather than a psychopathic disorder. If we want to go back to the original, psychopathic definition of Hans Asperger, that’s fine with me, too, but then we are using a theoretical framework that is different from the one surrounding modern Asperger’s, and we’re essentially talking about two different concepts of a disorder that may or may not have similar characteristics. (I don’t know enough about Hans Asperger’s cases to compare them in terms of characteristics to modern Asperger’s.) One may even question whether we’re talking about the same disorder.

Now I don’t actually even have a problem if my disorder were associated with serial killing. It already is associated with famous murder cases in the Netherlands, even though none of the murderers in these cases have actually been diagnosed. As long as criminal justice and psychiatry are kept separate, a mental diagnosis, even if that one is factually associated with an increased risk of committing crimes like murder, should not affect how we as people are being perceived. But the problem is that psychiatry and criminal justice are not kept separate.

The very creation of crime-based disorders, as in Fitzgerald’s “criminal autistic psychopathy”, connects psychiatry and criminal justice on a level they shouldn’t be connected on: if you have been diagnosed with a “criminal” disorder, you must be a criminal, and if you committed a crime, say, serial murder, you must have said disorder. This is troubling on more levels than ableism, because you can be convicted by a psychiatrist and found mentally disordered by a judge. That is not how the system, with all its risk of false convictions even in the case of serial murder and incorrect assessments of mental state, should work.

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Many American Preschoolers Take Psychiatric Drugs

Clay over at Comet’s Corner, posted an interesting article on the psychiatric drugging of young children in the United States. According to a recent study that I, sadly, cannot access, in 2007, 1 on 70 privately insured children between the ages of two and five were on at least one psychiatric drug. This is concerning, given the serious side effects these drugs can have as well as the lack of safety testing on children – many drugs are not FDA approved for use on children under age six or even on children of any age.

Of course, it is in part an offshoot from the overdiagnosis of pediatric bipolar disorder, but most children on psychiatric drugs in fact had mental retardation, autism, ADHD or a disruptive behavior disorder. Now two atypical antipsychotics – Risperdal and Abilify – happen to have been FDA approved for the treatment of autistic irritability in children, but not children under age six. For ADHD, I’m willing to bet the same is true: stimulants have been approved, but I don’t think for young children. No drugs that I’m aware of have been approved for (irritability associated with) mental retardation or disruptive behavior disorders.

It is also concerning that more than half of the children on psychiatric drugs, did not get a mental health evaluation or see a psychotherapist or psychiatrist. Without a proper psychiatric and psychological evaluation, how can you get a child on the right drug, supposing they need drugs at all? I am not opposed to psychiatric medication, and I am not even principly opposed to the idea that children should be on psychiatric drugs – although the safety concerns at this point outweigh the potential benefits for young children -, but medication should always be preceded by a mental health assessment, and I would think a child and adolescent psychiatrist needs to be involved. There may be a shortage of those. Fine, good way to get down the numbers of kids on unnecessary drugs, because you don’t make me believe that 1 in 70 middle to upper class, American preschoolers are so ill they need psychiatric medication.

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Autistics and Stigma: It Shoudln’t Be About Hidden Intelligence

Harold Doherty of Facing Autism in New Brunswick, in his most recent post, criticizes the assertion that the stigma associated with autism is fading. The reasoning behind Doherty’s view is that, while the stigma associated with Asperger’s Syndrome and high-functioining autism may be fading – which, I might say, is not to say it doesn’t exist -, there is still a huge stigma associated with autism with intellectual disability. For once, I agree with Harold here.

Now Doherty continues to criticize Richard Grinker’s view that autistics may in fact be more intelligent than they appear. This view is in fact backed up by research: a number of autistics score higher on non-interactive tests, and this can make the difference between intellectual disability and normal IQ. But that shouldn’t be the point here, because it is also a fact that a number of autistics do not score within the normal range of IQ even on non-interactive tests. I do not know for certain whether Grinker denies that fact, since Doherty’s quote may be out of context, but if he does, he is denying a very real autistic experience, and he is stigmatizing not only autistics, but everyone with an intellectual disability, and, to a lesser degree, autistics who do not have an intellectual disability but are not as successful as Grinker may think autistics can be.

Eradication of stigma based on the condition that the stigmatized group prove they have enough in common with the majority, is not an eradication of stigma at all. It is the creation of new stigmas. If we want to deconstruct the stigma of autism, we should start by acknowledging that some autistics in fact do not conform to the shiney examples of success that make it onto TV, and that these people are acceptable. No amount of hidden abilities research will help the acceptance of the autistics who for one reason or another do not show these hidden abilities. Hidden ability research is good in order to find interventions or supports based on strengths, but it is not some kind of ticket to acceptance, because as human beings, we should not have to earn that ticket.

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Autism and Regression

In Research on Autism Spectrum Disorders quite an interesting article appeared on the concept of autistic regression. I am aware that, within the autistic community, “regression” is a controversial term, because we don’t grow backwards. The authors, however, use it to refer to the phenomenon by which some autistics lose skills in communication and/or social interaction when they are about two years of age, either with or without prior normal development.

According to the authors, the prevalence of autistic regression varies across studies. It is between 15 and 27% in retrospective studies, yet a study specifically looking for it, found that 15% of autistics lost both communicative and social skills, and an additional 41% lost skills in either of these domains. All studies examined children with autistic disorder or PDD-NOS. Either no studies on Asperger’s Syndrome are available, or the authors chose not to examine them. The reason may be that communication is a significant factor in the onset of regression, while by definition Asperger’s children have normal language development. However, it would be interesting to see if similar worsening of core symptoms occurs in the areas of social interaction and repetitive behavior in children with normal language.

With regard to severity of symptoms, the studies reviewed differ on whether regressed autistics are more severe than those who displayed autistic characteristics all along and did not experience skills losses. Some studies say autistics who lost skills, have more severe symptoms, while other studies say there is no difference. Regression was, however, significantly correlated with the presence of epilepsy and intellectual disability. It was even speculated that epilepsy might be a causal factotr to skills loss, and that treatment with anticonvulsants might help treat the skills loss. However, no studies have been done on the effectiveness of anticonvulsants on autism core symptoms. To me, it would seem that, unless epilepsy or at least subclinical EEG abnormality is present, it makes little sense to put a child on an anticonvulsant just to see if their lost skilsl return, but I’m not sure if that was what the authors suggested. There are many other possible causes for a loss of skills, after all.

Reference

Matson JL, Kozlowski AM (2010), Autistic Regression. Research on Autism Spectrum Disorders, 4(3):340-345. DOI: 10.1016/j.rasd.2009.10.009.

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Psychiatric Patients’ Experiences and Perceptions of Seclusion, Restraint and Sedation

Yesterday, I stumbled upon an interesting paper in the International Journal of Social Psychiatry. The study, carried out in South Africa, aimed to examine the experiences psychiatric patients had with seclusion, restraint and sedation, and the perceptions these service users had of these procedures.

Mental health patients were recruited to interview 43 other mental patients about their experiences of containment. The authors say that it may be a disadvantage that patients were used as interviewers, but I think it is a good point of this study. Diagnostic information about the interviewees was not collected, but I consider this also an advantage. After all, it doesn’t matter what diagnosis may or may not have contributed to the behavior that led to your containment, and that diagnosis is far less likely to influence mental health providers’ attitudes than the fact that you have a diagnosis at all.

There were several problems with the use of restraitn, seclusion and sedation. First, seclusion was perceived to be primarily used as punishment rather than as a therapeutic intervention. One interviewee described being put in seclusion when they asked for PRN medication, for example. The conditions in seclusion rooms were also rather bad. For example, windows were broken, linen was dirty, and there were insufficient baqsic facilities.

On the other hand, sedation was seen as relatively humane, although most people despised haloperidol (a powerful antipsychotic with potentially serious side effects) as a sedative. I turn out not to have invented the word “shut up pill”, as an Afrikaans equivalent of it was used as a nick name for haloperidol.

Restraint was seen as one of the most abusive and least helpful interventions. Only six of the 43 interviewees had experienced this, of which only two found it helpful or necessary.

In general, patients saw containment as an infringement of their human rights. They were not content with the information provided by staff, and would want to have a choice of containment method. They also highlighted incidents of verbal and physical abuse. Furthermore, patients were inadequately re-oriented after containment and were not enabled to discuss their experiences. Lastly, a number of patients indicated isolation from family and friends. A problem here may be not so much the containment as the fact that patients from rural areas were transported to the city for psychiatric treatment.

A number of recommendations for implementation by mental hospitals are provided, including:

• Service users should be educated about their rights as contained in relevant mental health care legislation;
• All health care service providers, and in particular security personnel, should be adequately trained regarding the management of persons who are mentally ill and the assistance of service users in an emergency situation;
• Caregivers and family members of service users should be trained to detect early indicators of relapses and respond appropriately to prevent emergencies;
• Treatment should be administered as far as possible at a local health care facility so that service users can maintain contact with their support systems;
• Service providers should be trained to prevent distress by responding appropriately to early indicators;
• Debriefing and reorientating of the service user after intervention should be done;
• A caregiver or relative should be allowed to stay with the service user while they’re being transported to a health care facility and/or being sedated, secluded or restrained;
• Service providers should maintain communication about procedures to be administered and treatment options with service users even though they might appear disoriented;
• Service users should be encouraged to discuss with service providers the containment procedures they experience as most effective and least distressing;
• Service providers should be given training opportunities for the provision of care within a human rights framework;
• The culture of the health care setting needs to be changed. Administrative and therapeutic staff need to see a restraint-free environment and empowered patients as desirable and achievable;
• Service providers need to be given the therapeutic tools to manage violence-prone patients differently;
• Team work with common goals and ongoing communication will promote the safety of the service users;
• Trends in care need to be monitored and mental health service providers must be willing to engage with these and learn new techniques in consultation with service users.

Of course, given the limited resources available in the South African health system, it is quite hard to implement all of these changes. However, it would be highly desirable if mental hospitals all over the world took effort to implement them.

Reference

Mayers P, Keet N, Winklr G, Flisher AJ (2010), Mental Health Service Users’ Perceptions and Experiences of Sedation, Seclusion and Restraint. International Journal of Social Psychiatry, 56(1):60-73. DOI: 10.1177/0020764008098293.

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Force and the Informal Patient in the Mental Hospital

One of the more intriguing aspects of mental health law involves, to me, the position of the informal patient. In theory, in the Dutch situation, an informal mental patient has the same rights to informed consent as every other patient in healthcare. In practice, however, there are several reasons an informal patient may actually be subjected to forms of force while in the psychiatric hospital, which a somatic patient would not be subjected to.

First, there is the sliding scale between direction, coercion and force. Some therapies and interventions can be quite directive, and they can still be used with informed consent. Especially on acute and intensive care wards, house rules are usually also pretty strict, and it is hard to tell where these rules actually violate the patient’s individual freedoms. Furthermore, if a patient is informed of the consequences of their refusal to give consent to some intervention, such as the possibility of forced discharge or involuntary commitment, when is this information and when does it become concealed coercion? I, for one, was repeatedly threatened with involuntary commitment and forced discharge in situations which would not have warranted this.

Then, there is the situation in which an acute emergency calls for immediate action, before an emergency order of involuntary commitment can be obtained. For example, if an informal patient attacks someone else or tries to engage in serious self-harm, Dutch jurisprudence has granted health professionals the right to undertake measures, such as seclusion, to avert the imminent danger. As soon as possible, the mayor will have to be called for emergency detention in the hospital under our equivalent of the Mental Health Act.

Lastly, as I said, there is the possibility of forced discharge. A patient who is persistently unwilling to cooperate with necessary treatment, can be forced out of the mental hospital. Certain basic needs, such as for shelter and a minimum level of aftercare, have to be met, but the patient is themself responsible for arranging most services. They have to be allocated “reasonable” preparation time. On my former ward, 48 hours were used, which I for one consider unreasonably short. Note that a person cannot be discharged forcibly for the same behavior that led to the commitment, unless the risk of harm to the other patients outweighs the need of the informal patient, and there is no alternative, such as placement on another ward.

And still, I have caught my former treatment providers in illegal violations of my right to informed consent. Coercing someone into consenting to seclusion may or may not be legal, but executing a treatment plan without consent, certainly is not. It happened to me twice.

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