Weekly Linklove for 02/05/2011

Many self-respecting bloggers have a daily or weekly link round-up. I until now didn’t have one, since I mostly post my interesting links to Twitter. However, I thought I’d follow suit and create a weekly linklove post. This is the first edition.

differentlysane at Mental Nurse: Soteria – An Alternative to In-Patient Services for People with Unusual Experiences:

I went to a really interesting talk the other a day about the Soteria network and in particular, the attempts to start up a soteria (like) house within the UK.

Faithallen at Blooming Lotus: Child Pornography Involving Infants:

I have shared with you that I suffered from sexual abuse as a toddler. One of my earliest flashbacks is of my mother/abuser removing my diaper to sexually abuse me. When I share my story with people offline, that seems to be the hardest form of child abuse for people to grasp or believe. They cannot fathom that anyone would hurt an innocent baby or toddler, and yet this happens with much more frequency than anyone wants to believe.

Feminists with Female Sexual Dysufnction: Vulvar Pain in Women of Color:

Vulvodynia is a syndrome, a collection of symptoms, centered around chronic vulvar pain, lasting longer than 3 to 6 months. Pain (commonly described as burning, stinging, stabbing, rawness and/or irritation,) may occur in the vulvar vestibule, mons, urethral opening, labia, clitoris, or elsewhere in the vulvar area. Not all instances of vulvar pain are vulvodynia, and for some women vulvar pain may resolve on its own.

Nick Triggle at BBC News: Early Help “Key to Tackling Mental Health Problems”:

It is widely acknowledged that there have been significant improvements in adult services over the past decade, particularly in relation to the support available in the community.

Bill Georde at World of Psychology: Does Schizophrenia Need a New Name?:

I was very nervous when my editorial about schizophrenia
- there we go, a word I ought not to be using – appeared Open Access online in the December 2010 Journal of Mental Health (published by Informa Healthcare, New York). It contains personal details which it is not customary to reveal. Having got over that I had more anxiety when the printed journal was delayed by a month for unknown reasons. Now that it’s out I am calm again.

Amelia Gentleman at The Guardian: Women’s Groups Struggle Amid Funding Cuts:

Buried in a Department for Business document published a few days before Christmas was the news that the UK Resource Centre for Women in Science, Engineering and Technology would lose all its government funding.

Michelle Andrews at The New York Times: Treating Chronic Pain and Managing the Bills:

“If you tally up everybody who has chronic, recurring back, headache and musculoskeletal problems, it includes almost everybody by the time people get into their 30s,” said Dr. Perry Fine, a professor of anesthesiology at
the Pain Research Center and the University of Utah and incoming chairman of the American Academy of Pain Medicine.

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Prospective Study Finds Increased Psychopathology among Persons Sexually Abused as Children

When reading the study I’m going to review here, one would almost say “Oh, duh!”: it is logical and common sense that childhood sexual abuse (CSA) leads to psychiatric disorders. What is new about this study, however, is that it is prospective rather than retrospective. The presence of abuse was ascertained using a forensic medical registry. Unlike what the title suggests, not all subjects were followed up after 43 years: all cases of CSA between 1965 and 1995 were collected. Psychiatric pathology was also ascertained using a state registry of public mental health contacts that detailed the persons’ diagnosis. The sexual abuse victims were compared to a sample of the general population.

Sexual abuse victims were over three times more likely to have contact with public mental health than were the general population controls. This held true for both males and females. They were also more likely to suffer from all types of disorders except for eating disorders. The reason there was no significant correlation between CSA and eating disorders, may be that only those treated by the public mental health system were counted. The most significant risk correlation was found for PTSD, alcohol and drug abuse, and personality disorders. Female sexual abuse victims were significantly more likely to suffer from most disorders than controls, while non-psychiatric complaints were more likely to occur in males. Of note is that three sexually abused males had a diagnosis of pedophilia, compared to none in the control group. However, significance could not be calculated.

When comparing diagnoses in childhood versus adulthood, both remained significantly higher among the CSA group. In childhood, PTSD, conduct disorder and known drug abuse were the most significant, while in adulthood, other disorders and known substance abuse were more likely to occur.

When examining abuse characteristics, it was found paradoxically that mental health contact, diagnosis of a clinical disorder, and diagnosis of a personality disorder, were significantly associated with older age at abuse. On the other hand, most clinical disorders were significantly associated with younger age of abuse. I do not understand this paradox, although it was concluded that psychopathology is not associated with younger age at abuse.

Those who were raped rather than victimized to non-penetrative abuse were more likely to have contact with mental health services and be diagnosed with most disorders. Having multiple offenders was also a significant risk factor for mental health contact and diagnosis of psychopathology. However, whether the perpetrator was related or not, was only significantly correlated with psychosis, where people abused by a non-relative were more likely to develop a psychotic disorder.

Reference

Cutajar MC, Mullen PE, Ogloff JRP, Thomas SD, Wells DL, Spataro J (in press), Psychopathology in a Large Cohort of Sexually Abused Children Followed up to 43 Years, Child Abuse & Neglect. Published online: October 2, 2010. DOI: 10.1016/j.chiabu.2010.04.004.

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Autism and Mental Illness

Sarah over at Cat in a Dog’s World had an interesting post up about why neurodiversity should not just be about autism. Particularly, she highlights the problem with autistics distancing themselves from people with mental illness. Beyond the fact that this is inherenetly ableist, there are several reasons why this is inappropriate.

Firstly, unlike what Sarah says, autism can be considered a mental disorder in some respects. It is in the DSM-IV-TR on axis I. In some countries, autism is considered a psychiatric condition. The Netherlands is one such country, although the mental health system still is a bit awkward in handling autistics. Autistics without intellectual disabilities tend to receive care through the mental health system, and many take psychiatric medications. This is, by the way, also the case in the United States. It is in fact rather hard to determine the borders between psychiatric and neurological conditions, because many mental illnesses also have underlying brain mechanisms.

Secondly, many autistics have symptoms commonly associated with mental illnesses, such as anxiety. Sometimes, these aren’t even diagnosed as separate disorders. In my own case, my anxiety is not separately diagnosed, even though it is not medically speaking part of autism. The same can go for other symptoms. This, combined with the fact that many autistics do have coexisting mental illness diagnoses, makes it even harder to distinguish the two.

But why should it matter at all? Of course, sometimes, the misconception that autism is a mental illness leads to inappropriate treatment, such as unwarranted drugging, and it is rather necessary that the two be distinguished then. But when the only aim is acceptance for autistics, it should not make a difference. People with mental illness deserve and strive for as much acceptance, after all.

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The Medical Model of Mental Illness: It’s About Force, Not Drugs

Zarathustra had a post recently in defense of the medical model of mental illness. As my background is in the social model of disability, and this is somewhat different from the antipsychiatry movement, I realize that in some respects, the association of the medical model with drugs and biopsychiatry, is correct, especially in the historical context of its emergence in the 1970s. But really, should it be about that?

First of all, science has simply caught up with the idea that there is no biological basis for what we see as mental illness. Even though the biopsychiatric model has probably gone too far a bit, it is well-established that differences in brain wiring and chemistry do exist, and genetic profiling of people diagnosed with mental illness is on the way. For this reason, the construct of mental illness as merely sociological, does not hold true anymore. But does that say anything about the approach we should take to people we think of as mentally ill and the limitations these people face? From a neurodiversity standpoint – and I am aware that neurodiversity hasn’t made it into the general psychiatric community yet, but I hope that will change someday -, I don’t think it does. In fact, the neurodiversity movement, which is an offshoot from the disability movement, says quite the contrary: our neurological differences are ingrained in our brain wiring. In fact, to a number of neurodiversity activists, not including me by the way, this is a major basis for their philosophy of acceptance. To me, however, causation does not change the fact that eveyrone, regardless of mental or neurological difference, has the right to be accepted. Whether you believe in biopsychiatry or in the sociological model of mental illness, or, like me, believe the two cannot be separated, does not change this.

The medical model of mental health may have originated in biopsychiatry and been associated with the view that medication is the primary treatment of mental illness, but that is not what the medical model is from a broader disability rights perspective. (For clarity’s sake: the medical model of course didn’t exist as a concept until the antipsychiatry and disability rights movements came up with their own models.) From a disability rights perspective, the medical model of mental illness views psychiatric disorders as intrinsic flaws in behavior or experience, objectively defined by doctors or other mental health professionals, and in need of fixing through the treatment the mental health professional thinks the patient needs. As you will likely have noticed, I include non-medical professionals here, and the treatment these professionals may use to “fix” someone’s mental illness, may not be biological in nature. Psychotherapists and even social workers can employ the medical model as much as psychiatrists can. The key factor is that they decide who is and isn’t mentally ill, they decide what aspects of the person they decided has a mental illness, need to be “repaired”, and they determine the “fix” they will use on their patients. Usually, lack of regard for external, social circumstances is involved, but not necessarily so: when a mental health professional acknoweldges that a person is in unfortunate circumstances, but they are blaming the person’s lack of appropriate coping strategies on a mental illness, they employ the medical model, too. A slur like “This setting is inappropriate for autistics, but of course we can’t change the setting” employs the medical model no matter how badly the professional uttering it wants to avoid it.

Now that I have made it clear that the medical model is not merely about biopsychiatry, and that many more professionals utilize it than the ones who prescribe drugs for every single complaint a patient comes to them with, what does it take to avoid this model? It takes a shift in philosophy and culture, and that is freaking hard. It requires the viewing of every person, regardless of their mental functioning, as fundamentally acceptable. It requires the view that every individual has the right to make decisions about what happens to their own brain and mind. This, for clarity’s sake, does not mean that a professional should be hanging around doing nothing until the patient has written their own treatment plan. Even if a patient, like me, is pretty much on top of what happens around their own condition, they may not be equipped with all the knowledge they need in order to make a wise decision about their own care, or they may not be able to communicate it. I couldn’t stop cringing in “psychopharmacology 101″, that is, the consultation with my ward psychiatrist I had last Friday to see if medication could help me with my irritability. However, that does not mean that I could just as easily make my own treatment decisions from now on. I emphatically cannot. Communication and cognitive difficulties – reading scientific papers requires different skills than drafting your own real-life treatment plan – aside, I didn’t go to med school. And with regard to psychological treatments, I may have studied psychology for a while, but that doesn’t equip me with the knowledge and skills to make educated decisions about my own treatment per se.

So what do I mean by giving the patient the right to decide what happens to their own brain and mind? It means that, while a professional may provide information and education and quite often actually make a recommendation, the patient is the one who decides what happens to their own brain and mind. Not only that, but a patient should be equipped with the knowledge they need to make that decision wisely, and the skills they need to actually exercise this right. A recommendation for a drug should not be merely motivated by “It will make stuff easier” (one would hope so!) – even though bad puns on drug names along those lines, in the course of a longer explanation, are fine (except that they increase my already high cringe factor tenfold). The same goes for blanket nonsense about the presumed effects of psychotherapy, which is also always presumed to help in the end. Simply saying that the patient is the one who will ultimately decide to swallow a pill (except if they use an intramuscular depot) or come to therapy, is not enough to equip a patient to genuinely assert their right to make their own decisions. This is precisely why a shift in philosophy is required: merely saying that you support a patient’s right to make their own decisions, may too easily lead to blanket statements and concealed coercion.

Here, I presumed that a diagnosis, in fact, can be made without a patient’s input, and it is only about the treatment of that disorder that the patient has the right to make decisions. This is not entirely true. While in the current psychiatric situation, a diagnosis will be made by a clinician, it is increasingly more common for patients to be actively involved in their own diagnostic process. This should not mean that a patient who clearly has, say, schizophrenia, gets to decide that they are depressed because they fancy antidepressants more than antipsychotics. Mental difference is not about fancy, after all. Perhaps more realistically, it also does not mean that anyone with a self-diagnosis of autism, actually has it. Then again, conversely, it does not mean that a clinician can play the psychiatric diagnosis god. Psychiatrists’ and psychologists’ scope of expertise is limited, too, and a key factor in genuinely acknowledging a patient’s right to autonomy, is acknowledging your limitations. If an autistic comes to a psychologist who happens to specialize in, say, personality disorders, it is unethical for that psychologist to diagnose a personality disorder the autistic resembles most, rather than referring them to a psychologist with expertise in autism. It also does not mean that, if that psychologist did not recognize the autistic as an autistic and did diagnose a personality disorder, that diagnosis overrides the autistic’s lived experience. Further, even if a correct diagnosis is made, that does not give the professional the right to ‘splain the patient: while mental diagnoses have value in some respects, they do not override real-life experience. That is, they never override lived experience, even if that experience is thought to be a part of the mental illness. For example, if a person with a psychotic disorder has paranoid delusions and hallucinations, that may mean that no-one is factually persecuting that person, but that does not give anyone else the right to say the patient isn’t really feeling that way.

I need to be making one thing quite clear here, however, which is actually at the core of my belief that the medical model and biopsychiatry are not necessarily interconnected: no-one has the right to ‘splain someone else or to coerce them into making decisions about their own brain or mind. That does mean that the anti-pharma movement cannot dictate that people shouldn’t be taking drugs. Some people may actually think of their mental illness as something biological, or they may have had good experiences with psych drugs. It is up to them to make that decision. That does not mean that you cannot offer them information about the risks of these drugs – and I realize here that not everyone has the access to the book of pharmacological information for physicians I do -, but you should not be giving that information in a coercive manner at all, and that includes refraining from portraying risks as absolutes. Just as much as a doctor cannot prescribe a psych drug with the motivation that “it will make stuff easier”, an anti-pharma activist cannot tell a patient to stop taking their antipsychotic because “it will give you tardive dyskinesia”. In the same way, a psychotherapist cannot constantly tell a patient blanket nonsense about how it will eventually make them feel better, but a therapeutic “freedom” activist cannot tell someone who is having success with therapy, that they should be quitting. It may seem oh so progressively antipsychiatrist to oppose mental health treatment, or psychiatric drugs specifically, but it is as oppressive as the medical model held by mental health professionals if it becomes prescriptive.

One last thing that Zarathustra did highlight, is the fact that, for some patients, too much information can confuse them, and to tell them their diagnosis and how it will be treated, may be the easiest road to travel. Since Zarathustra is a mental health nurse, I am not sure whether this statement reflects genuine lived experience, but I can see how it would. Too much information may actually overwhelm a person and make them unable to make a decision. But then again, is it really up to someone to make that decision for someone else? In fact, I have seen it a few times that a nurse withheld a medication leaflet from a patient because it wouldn’t be “appropriate” for them, even though the patient requested it. It is possible that the leaflet would not carry the most relevant information, for example if the patient takes the drug for off-label use, and it is quite possible that a patient will be freaked out by a side effects profile (I was horrified by the relative risk of cardiac events for the drug my psychiatrist recommended), and it is even possible that the patient’s mental illness symptoms will influence their perception of drug or other treatment information, but is that a reason not to give that information at all? I don’t think it is.

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Americans Define Mental Illness All Over the World

Several bloggers have commented on Ethan Watters’ New York Times magazine article about the Americanization of mental illness. In this article, Watters discusses how presentations of mental illness that used to be specific to certain non-western cultures, are being rapidly overturned by classic presentations of DSM-IV psychiatric diagnoses. One such example is a specific form of anorexia nervosa, which used to be a rare mental illness in Hong Kong. Unlike western anorexics, sufferers of this condition were not overly focused on a self-perception of fatness or the pursuit of weight loss. Rather, their food refusal stemmed from a psychogenic form of abdominal discomfort. Even though this type of anorexia was still rare, “western” anorexia nervosa was unheard of in Hong Kong in the 1980s. This changed when, in 1994, an extremely underweight girl, who could’ve been diagnosed with “western” anorexia, collapsed on a main street and died. From then on, the incidence of anorexia, specifically of the type that made it into the DSM-IV, started to rise. This cannot be attributed to a sudden rise in biological predisposition to eating disorders among the Hong Kong population, since the timeframe would’ve been too short for this. A more logical explanation would be the fact that the American diagnostic standards of mental illness, and from there on the American conception of what is and is not a legitimate psychiatric disorder, are rapidly becoming the worldwide norm.

Is there any evidence that “culture-bound” syndromes, such as koro (fear that one’s penis will retract into one’s body and cause death) and amok (sudden, murderous rage followed by amnesia) are any less valid than the psychiatric diagnoses that have made it into the DSM? Or is it simply that the creators of the DSM are mostly white, American males with their own cultural bias? If that is – quite likely – an important factor in what is and is not seen as a psychiatric disorder, what implications does that have for the conception of presumed underlying mechanisms of mental illness? Is the solution to the problem of rare, “culture-bound” syndromes simply to wait until everyone has caught on with America’s norms of mental illness, so that we can go on researching what causes them without interference from koro and amok? Should an Asian psychiatrist diagnose the few koro and amok patients he might still encounter – because the general population is rapidly catching up on the American experience of mental illness – with whichever DSM diagnoses resemble these phenomena best, thereby imposing a foreign concept of mental illness onto these people? Or should they simply ignore these patients in favor of people with more westernized symptomatology? What about the consequences for these patients’ treatment in their communities, which may or may not have caught on with the Americanization of mental illness?

If we believe that mental illness is largely caused by underlying biopsychological factors, what with the clear discrepancy between current research into the underlying psychological concepts behind western anorexia and the form of anorexia that used to be present in Hong Kong? Currently, it is believed that anorexics overfocus on the ugly parts of their body. Could such a hypothesis be formulated about anorexicts whose food refusal is not caused by a willingness to become thin? For research purposes, it’s sad that Hong Kong anorexia vanished. It is possible that general biological mechanisms underlie mental illness, but that cultural factors determine how they’re expressed. This could lead to the same biological principle leading to quite different clinical presentations, but my inclination is that the reverse could happen just as easily. Is there any way to be sure that the non-American forms of spirit possession, are really schizophrenia, and would respond to the same treatments that western schizophrenia does? A specific study among these populations would have to be carried out to find this out – but then again, what if spirit possession is not perceived as a mental illness in certain cultures? Should we impose on these cultures that it is?

Incidentally, I am reminded of a much less extreme, but somewhat significant, effect of the exporting of American concepts of mental illness. In the Netherlands, the DSM is used as the classification system for mental illness, and American research on treatment for diagnoses classified within this system, is generally accepted at face value here. Bram Bakker raised an interesting concenr here in one of his columns I recently read: most clinical trials of psychiatric treatments are carried out on poor, black Americans who can’t afford health insurance. Is it fair to assume that the same treatment for, say, depression, that works for these people (presuming it really works and pharmaceutical companies haven’t obscured results that don’t suit them, of course), would work for an upper class, white person in the Netherlands? And remember, both the Netherlands and the U.S. are industrialized, western countries.

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College Experiences for Students with Mental Illness

Abby Jean writes on FWD/Forward about her experiences in college as a person with mental illness. In particular, she describes how class privilege made it possible for her to stay in college despite attempts from ableist university employees to get her out. Class discrimination is quite prevalent in the U.S. system as a whole. For example, Abby Jean could not have accessed quality mental health services if her parents hadn’t had the money to pay for a private psychiatrist and therapist. On the contrary, in the Netherlands, mental healthcare is covered in the basic health insurance package every resident is required to have. We do have university counseling departments here, too, but if you have serious mental health issues or need a formal diagnosis, I recommend that you get a referral to a mental health agency through your family doctor instead of going there. University counselors can’t make official diagnoses, don’t have time for or expertise in psychotherapy (other than some preventive therapies), and they most certainly cannot prescribe drugs (hint: Abby Jean’s counselor should be really glad she hadn’t graduated yet or she’d have lost her license!).

When Abby Jean was hospitalized, the university wanted to kick her off campus after her discharge. In my situation, the university may’ve not wanted to get me back there (I am not sure, since I didn’t want to go back myself), but they weren’t responsible for my housing. The student counselor has some influence there, in that she asked the housing association to allow me to stay in my home for the remainder of the year (2008, I don’t know why I haven’t been kicked out yet). Now I may’ve been in a different situation had I not had my own apartment. In a dorm, after all, fellow students would’ve been upset by my behavior far earlier than they did now. On the other hand, like Abby Jean says: what about the people who binge drink and then pass out on the stairs?

Abby Jean’s point that non-academic accommodations are not widespread in the university system, is interesting. In fact, in the Netherlands, if you disrupt a few university classes or even if you are acting up outside of class, even if it’s due to a documented disability, you will pretty likely be kicked out. I almost had to quit a week into university because of a few meltdowns on college grounds, outside of class, because “a university is not a therapy center”, as the student counselor said. And it wasn’t that I requested any accommodations or really asked for any help in cases of meltdown, but that other students who saw me melting down (or even if they saw me just being lost) would request someone from the student services or my volunteer student buddy from the autism program to intervene. There seems to be an unwritten rule that, as a person with disabilities, you are responsible for other people’s reactions to you.

I am not sure about the details of Dutch disability discrimination legislation. I know that it applies to colleges and universities, but I’d not be surprised if it is okay to discriminate on grounds not obviously related to curriculum access – and besides, the university can pretty easily refuse to make instructional materials accessible with the argument that “every other blind student we know has a relative do this for them”.

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World Mental Health Day and the “Just Like You” Divide

Today is World Mental Health Day. Now I happen to have a problem with any type of “special, vulnerable population day”, because awareness that this population exists should not be concentrated on just one day of the year. I see it each year on October 15, International White Cane Safety Day: all these politicians and celebrities who put on a sleepshade and walk across a street with their white canes. Every newspaper has its share of “awareness” stories about how unsafe some parts of traffic are for the blind. Does anything change? Of course not. And I don’t see any reason to assume this is different for World Mental Health Day: people might have heard of it – I think mos thaven’t, since I didn’t know it existed until a few days ago -, and those who have might think about mental illness stigma for a few seconds (or they may just wonder to themselves when it is “World Normalcy Awareness Day”), but in the long run no-one is going to change their attitudes any.

But that is not the point I want to write about now. I came across an article by D.J. Jaffe, a self-acclaimed advocate for the mentally ill, that states that there is nothing to celebrate about the U.S. Mental Illness Awareness Week this week. In it, Jaffe states that there is no reason to fihgt stigma that, according to him, doesn’t exist (I don’t know where he gets that from, but well). I agree that all the “we’re just like you” nonsense is irritating, but that is about as far as my agreement with the article goes. Jaffe, namely, uses the “just like you” stupidity in the exact way that makes it irritating to me: it reinforces a nonexistent divide between those that are “well” (or, in Jaffe’s words, “worried-well”) and those that are “ill” (or “severely ill”).

Again, before I get an army of mental health advocates who tell me that someone who has been diagnosed with mild depression or anxiety and can be treated in the community with a short course of CBT or some Prozac, is different from someone with chronic, treatment-resistant schizophrenia who is at risk of harming himself or others on a daily basis because his psychotic symptoms cannot be fully controlled: I never said there was no difference. All I am saying is that the line cannot actually be drawn anywhere that wouldn’t be arbitrary. That’s just not how mental illness works: mental illness affects everyone differently, and impairs some in a more severe way than others in one or more domains, and some people respond better to certain treatments than others.

I also maintain that community changes would help the group considered too severe for anti-stigma campaigns, too, if they were just based on the right logic. Societal change should not be based on the premise that “those people are jsut like us”, but on the premise that everyone should have the same basic rights. Of course, I realize that this goal cannot be attained overnight, but it would change a lot if anti-stigma people as well as Jaffe’s crowd of “advocates” for the mentally ill would just stop dividing the world in those good enough for equal rights and those so bad they can be discriminated against in the name of advocacy.

As a side note, I am not opposed to (research into) treatments for what is knwon as severe mental illness. I can see the reason why most agencies won’t fund it – it is far more cost effective to fund research that is likely to harvest success -, but I don’t share this opinion. Before anyone starts telling me that I think someone with chronic, currently unmanageable schizophrenia should just kill himself because his voices tell him to, I’m not saying anything like that. I say that public awareness and community change (and a shift of attitude among professionals!), if built upon the right premises, benefits everyone, and that there is no reason to deny those arbitrarily decided to be “severely mentally ill” inclusion and equality just because they cannot claim to be “just like you”.

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Autism: Intellectual Disability or Psychiatric Illness or What?

Blindness and visual impairment make up their own disability category, with product and service providers catering specifically to that community. Autism spectrum disorders, at least in the Netherlands, do not. “Actually, you don’t belong here, you don’t have a psychiatric illness,” nurses in the hospital have been telling me repeatedly. Yet I was diagnosed for the first time by a doctor in training to become a psychiatrist, both of my diagnosticians worked for mental health agencies, I had been in outpatient treatment with someone called a social psychiatric nurse, I qualify for support services under mental health, and I recognize many behaviors in my fellow patients, with various forms of mental illness, on the psychiatric ward.

“You don’t belong there, you’re not intellectually disabled,” my social worker tells me when I propose we call an agency for the mentally retarded to see if I can be placed there. Yet I have always received support services from agencies catering (partly or mostly) to the intellectually disabled, the people who first (unofficially) recognized my autism, worked for an agency that serves those with intellectual disabilities, my old special education school used to suspect I had an intellectual disability, and I used to recognize many behaviors in my fellow clients, who were mentally retarded, in training home.

Autism services are shattered all over the place. For adults, it is the mental health system or the system for those with developmental disabilities. For children, in the Netherlands, it is also the child/youth service system. The question whether you should be in service with a mental health agency or with an agency for those with intellectual disabilities, used to seem to be something simply about IQ: those with an IQ below 85, went to the intellectual disability agency, and those with an IQ above 85, went to the mental health agency. This post is too brief to go into the controversies around “functioning levels” or the significance measured IQ plays in them, but I used to think it worked that way. Not anymore. The RIBW, which is the Dutch agency for supported and sheltered living for those with mental illness, refused me last sumemr because I’m also blind. An agency that caters mostly to those with physical impairments but also to those with developmental disabilities, ended up accepting me. Another former training home client, who has a form of autism as well as a mild intellectual disability, ended up being accepted by the RIBW in his town.

In education, it’s not much easier. Some children with ASDs who need special education will be accepted into what is called cluster 2 special education, the school system for those with hearing impairments and speech/language difficulties. Others will end up in cluster 3, which is the school system for those with physical and/or intellectual disabilities. Most end up in cluster 4, which includes schools for those with emotional disturbance and severe psychiatric illness. In the USA, children with autism or Asperger’s qualify fir IEPs under “other health impairment” – never mind that autistics possibly make up a larger portion of the school district’s population than those who are legally blind. (Statistically, blindness occurs in one in hundred individuals, while autism occurs in at most one in 150, but children are overrepresented among autistics and underrepresented amogn the blind.)

But, of course, the question is not so much which bureaucratic service system will take you. Well, it is a question I face, of course, now that I need to find myself a new place to live, but it is not what affects me most. More important is which support approach most fits me. I am not particularly helped with the continuous rehabilitative model used in psychiatry and in most RIBWs. After all, even the “re” in “rehabilitative” makes no sense – I was never a normally-functioning person, and there is no normally-functioning person hidden behind me, so I have no need to become one (again). Resocialization – there are plans to move me to a resocialization ward – to me means regaining the functioning I had before I became unstable, not gaining functioning that I didn’t have then, either. Also, psychiatric medications will not cause my autistic symptoms to go away. I may take a tranquillizer to calm me when I’m melting down, but that’s about it. But I’m glad that a nurse helped me develop a crisis signaling plan – even though it’s not been updated in four months -, and I take advantage of every opportunity to learn from my fellow patients and the nurses in the psychiatric hospital. On the other hand, I am not helped by being treated like I have a diminished rational understanding of things, either, and too practical an approach will not work. But alternative communication methods and daily schedules do work for me, and I used to take advantage of whatever I could learn from my intellectually disabled peers and the staff at training home.

But even the question of which support method suits me best, is not the most important thing. The most important thing to me is the identity component. Autistics make up their own community, that borders with the intellectual disability community and the psychiatric patients community. Personally, I take the best of both. I feel more connected with the intellectual disability community, perhaps because of the developmental nature of my disability and its being congenital, as well as the fact that intellectual disability professionals tend to understand behavioral issues, while psychiatric illness professionals don’t tend to understand developmental deficits. But I’m not sure. Maybe, fifteen years from now, when all the autistics diagnosed in the late 1990s and early 2000s, are adults, we will have a fully formed autism/autistic community, with its own service system, that doesn’t place us into boxes that we fit into somewhat but just not quite. It’s one of the dreams that I hold onto – only fifteen years is such a long time!

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Physical Illness Blamed on Psychiatric Disorder

There is someone on my ward who is very physically ill, but it’s pretty much being ignored because the doctors aren’t sure whether it’s a general medical condition causing the problem, or if it’s a result of her psychiatric illness. A few months ago, there was a TV show on medical malpractice, and they had a case on it of a woman dying from a lung condition, which was blamed on somatization because of her borderline personality disorder. In my opinion, doctors pretty easily blame patients’ physical complaints on their mental illness.

Obviously, somatization – where mental distress causes physical symptoms – happens. Especially with vague physical ailments, this is a possibility. We all know how we may get headaches or constipation from stress – and this even occurs to mentally healthy people. However, actual physical causes are also possible, and may pose a significant danger to a person’s health and even life, as happened with the woman in the TV show and possibly with the one on my ward. And just because a person has a mental illness, doesn’t mean they can’t get physically ill.

When people without a history of psychiatric illness come into the doctors’office with symptoms, it’s first determined whether a physical condition causes the problems. This is done pretty extensively, and only if the doctors truly cannot find a physical cause for the person’s symptoms, is somatization considered. But this is very different when a psychiatric patient enters the doctor’s office. One of the doctors who were asked to comment on the TV case, an otolagyngologist, admitted that his opinion on possible causes for his patient’s problems is colored when he learns that the patient has a psychiatric illness. I am not sure yet if this is the case with my family doctor – who knew from the beginning on that I have a psychiatric problem, because she prescribed my risperdal -, too. I asked her about four different physical symptoms so far, and she at least did a physical examination for all four. With three of them, she ended up finding a physical cause – nothing serious -, and with one, she suggested stress. I hope, of course, that she will take me and other psychiatric patients in her care seriously when we come in with physical symptoms. Ideally, as with mentally healthy patients, doctors would first rule out physical causes before jumping to conclusions about possible somatization – because it may save the patient’s life.

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Mentally Ill at Increased Risk of Health Problems

Research found that people with mental illness are more likely to die from cardiovasuclar diseases than people in the general population. This is due to many circumstances. Firstly, mentally ill people are more likely to engage in unhealthy lifestyle habits, such as smoking and high-fat eating. However, there are also reasons directly related to their psychiatric illness. For instance, antipsychotic medications have as a potential side effect an increased risk of diabetes and cardiovascular disease. This may be primarily – antipsychotics mess with one’s blood glucose and liver enzymes, for example -, as well as secondarily, due to the fact that antipsychotics often cause weight gain. Hence, people on antipsychotics should be monitored extra carefully for disease risks. Ideally, people on antipsychotics should have regular monitoring of blood pressure, blood glucose, cholesterol and triglycerides (liver enzymes that may be elevated in antipsychotic users). Checking for increased triglyceride levels is in the medication info for Risperdal on the Dutch pharmacy website I use for my medication ingo, and so is the recommendation that diabetics check their blood glucose more often. I don’t know what actually happens as far as testing is concerned – I was never tested for anything, but I’ve only been on an antipsychotic for 2 1/2 months. Even so, someone on an autism list was shocked when I said so, saying I should’ve been checked at baseline.

Another factor of concern is the fact that people with mental illness are relatively unlikely to be screened and properly treated for diseases such as diabetes, high blood pressure and high cholesterol. It is possibly harder for those with psychiatric problems to participate in screening projects, because of the fact that they don’t have as easy access to primary care. In this case, I think it’s important that it is made sure that psychiatric patients get appropriaate medical screening and, if needed, treatment. I’m not sure how this works for people with psychiatric disabilities, but I find it hard to access healthcare independently and know this is a relatively common issue among people with autism. It seems understandable that there’s this same problem in people with mental illnesses like schizophrenia, hence putting them at risk for remaining undiagnosed with potentially dangerous conditions.

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