Psychiatric Deinstitutionalization and the Premise of Cost-Effectiveness

A few days ago, the author of Lunatic Fringe commented on the closure of Pennsylvania state hospitals as a positive thing. On the same day, however, Crazy Mermaid commented on the shortage of psychiatric hospital beds as something negative. These are two rather opposite views on the very same issue: should we be keeping or even building new psychiatric units for people with mental illness, or closing them down and sending former patients into the community?

First, let me be clear on this: I am all for deinstitutionalization. In this sense, I support the closure of state hospitals, where long-term patients are usually warehoused without any prospect of ever going back into the community. The solution to the homeless population is not to cover them away into psychiatric institutiotns far away from civilization. That might solve the “problem” for the general public, who no longer have to see homeless people on the streets, but it does not solve the problem for the homeless themselves: while they may now have shelter, their quality of life is likely not going to be all that good when warehoused in a state institution.

Unfortunately, the presumption behind deinstitutionalization, which I see popping up time and time again, is the exact reason it doesn’t work: it is supposed to be cheap. Long-term psychiatric patients are suddenly, through some shift in philosophical or political thinking from people who don’t have mental illness themselves, seen as oh so capable of living and working in the community. Go close the state hospitals and discharge the people into “normalized” society. Guess how cost-effective it is to provide them with community-based services? Wow, saving money, that’s great!

I see the so-called success rates over at Lunatic Fringe, but since there are no statistics, I have no clue what a “vast majority” is. Even if I had statistics, these would not really say much to me, because they don’t communicate the lives of real people in real communities. We do not know what success means. Does it mean the people have a good quality of life, or does it mean they are hanging on just enough so that the crisis team won’t have to take them seriously, like I was when I still lived at home? We do not know, but I will bet that there are a number of people who fall into the latter category. And then there are the people who do not fall into the “vast majority” of success stories. What happened to them? Have they found a warehouse bed in another state institution that didn’t close? What about the people who weren’t discharged upon the institution’s closure?

The presumption of cost-effective community care sets an artrificial barrier for people to live in the community: only those who are deemed to be cheap enough, are being deinstitutionalized, and if those who aren’t cheap enough, are being discharged, too, the risk is high that they will have as miserable lives as they had when living in the institution. These people, who cannot hold on to the standards of the rcovery model, apparently don’t matter.

I have said this a million times in reference to people with developmental disabilities already, and the same goes for people with mental illness: people need appropriate care in a place they want to live in. Deinstitutionalization is great, but it is only great when appropriate, individualized community supports are in place. These supports should not just cater to the crazies who really can have a job but no-one bothered to see, but also to those who can’t. Warehousing isn’t good for anyone, but we shouldn’t have to prove how cheap it is to release us in order to be allowed to live in the community.

Neuropsychological Triad of Impairments for Autism

shiva of Biodiverse Resistance proposes a new triad of impairments for autism spectrum disorders. As I myself wrote before, the current triad lacks consideration for many of the symptoms which impair autistics most seriously. shiva’s proposed triad, which consists of communication, executive functioning and sensory processing, gives a lot more consideration to some of these major “non-core” symptoms. The most likely reason these impairments are not likely to be included anywhere in DSM-V, unfortunately, is their lack of objectivity on behavioral rating scales: it is just a lot easier to note that a child (or an adult) is stimming than that they have sensory processing issues, or to see that someone has routines, rather than noticing that these routines are necessary for establishing an organized life.

There are, however, some problems with the current behaviorally objective triad (which will be narrowed down to two sets of criteria in DSM-V, by the way). First of all, there is a somewhat arbitrary divide between autistics and people who have the same social, executive and sensory issues, but who do not display the behaviors required for an autism diagnosis. Now I am aware that some of these children (they are mostly children) are given an autism diagnosis just so they can access services, and some others are diagnosed with semi-formal disorders such as sensory integration disorder. If we agree that these people have a legitimate disability – which is a question all by itself -, why won’t we agree that they essentially have the same neuropsychological impairmetns as autistics do? I am aware that the DSM is a psychiatric handbook rather than a neuropsychological handbook, but neuropsychologists are goign to be forced to deal with it, too. Besides, it isn’t like the DSM simply doesn’t care about such things as executive functioning, since it is part of the diagnostic criteria for dementia and related cognitive disorders. If psychiatrists didn’t care about things they shouldn’t be sticking their noses into, like neuropsychological functions, they shouldn’t be including them anywhere in their handbook. Now we get to have psychiatric diagnoses for people who meet certain behavioral characteristics, and neuropsychological diagnoses for people who don’t but who essentially have the same underlying impairments. This does a disservice to both groups, who may be inadequately supported.

Beyond this, many of the current DSM-IV criteria, and most likely the DSM-V criteria, too, are essentially viewed as coping strategies by autistic people. For example, many autistics stim to deal with sensory overload, or have rigid routines to organize their otherwise chaotic life. Special interests may also be a way of coping with social isolation. Now, rather than recognizing the underlying problems and treating these, the coping mechanisms people use to deal with them are pathologized. Worse yet, getting rid of them is seen as progress towards becoming less autistic. This can be detrimental to autistics’ wellbeing, unless there is evidence to suggest altering behaviors really does help neuropsychological function. This is a possibility, so if anyone is aware of any neuropsychological study on this, they’re invited to send me the source. However, even if such evidence existed, this would still not be a reason to consider every trained autistic to be neurotypical by the mere fact that they no longer meet behavioral autism criteria. If psychiatry is not ready for neuropsychological core criteria of autism, they have some good reasons to, since it is true that these functions cannot yet be as objectively assessed as behavior can. However, then for heaven’s sake let them acknwoledge the possibility that these impairments exist. Even behavioral criteria haven’t been set in stone, after all.

Study Finds Brain Activity in “Vegetative” Patients

Yesterday, my boyfriend sent me a NYtimes.com article on brain activity in people in apparent vegatative state. The study the article discusses examines the possibility that some people in a vegatative state – that is, people who have opened their eyes and for this reason are not in a coma, but who give no further response to their surroundings -, may be able to communicate in simple “Yes”or “No” answers by showing distinct brain activity on MRIs. Note that this capacity is likely pretty rare, so it isn’t like all people in a vegetative state would be able to communicate if we just gave them the technology (that is, an MRI scanner to track brain activity) and training to. I am not even going to look at the sensationalist pro-life commentaties with little if any scientific merit that will undoubtedly come out, and as it appears, Terri Schiavo doesn’t have a thing to do with it, because this capacity cannot possibly have been present in her. However, what the study does say is that clinical judgment may not be sufficient to determine that a person is a “vegetable”.

What, however, is the problem with this study? What would actually be wrong with the possibility that a few “vegetative” patients can learn to communicate with technology? That this technology – and the extended nursing and medical care patients would need if allowed to live longer – is so expensive that they presumably don’t deserve it? That it is creeping to know that people presumed to be “vegetables” might be able to communicate after all, and might be able to make their wishes known despite our previous conception that they can’t? That our former conception that someone who merely “vegetates” is not worth living, is being challenged? In reality, that isn’t true, since we don’t need hidden abilities to question this presumption: why is it that (meaningful) communication is always presumed to be a preqequisite for human worth, anyway? I have never understood the concept of PVS, in that I believed that, if a person could be fed through a feeding tube, why would they be considered “brain dead”? Since having studied neuropsychology, I realized that what is really meant by PVS, is not a coma, but the (perceived) inability to do anything other than consuming food and hydration. That would’ve been obvious from the term “vegetative”, but it wasn’t to me.

Now of course this study does provide some challenge to the idea that people who cannot clinically be found to communicate, are “vegetables”. In fact, I am surprised to find out that, until now, only clinical judgment was used to assess people for “vegetative” state, because clinical judgment could create massive errors. Of course, it is useful – brain scanning may not have any real-life validity, after all -, but it isn’t the only possible way of determining activity and potentially cognitive skill. For example, when I first read about a patient with what is called locked-in syndrome, I always wondered how doctors would diagnose this, as opposed to vegetative state, in a blind person. LIS is characterized by total paralysis except for upward eye movement, but cognitive abilities are usually intact. It is usually assessed by a clinician by determining a person’s ability to track a light beam. Clinical judgment would obviously not be sufficient in diagnosing this condition in a blind person, so I do have to wonder whether one has ever been reported and, if so, whether brain scanning techniques have helped.

Brain scanning and the potential hidden abilities this can reveal, however, do not challenge any preconceived notion that meaningful communication is required for human worth. This is really at least as troubling as the possibility that advanced technology could reveal hidden abilities that are missed on clinical evaluation. Are we somehow imposing abled standards on profoundly disabled people’s quality of life if we judge them worthless without meaningful (by our own standards) interaction? What about the inherent ableism in the notion that merely “vegetating” is equivalent enough to death that euthanasia could be provided? We cannot consult someone in a PVS on this matter, of course – at least, not someone who cannot be found to communicate even with current technology -, and the Terri Schiavo case did illustrate the potential problems with advance directives. In this sense, the “right-to-die” controversy will always be political, no matter how far medical technology will go.

Oral Surgery Went Much Better This Time

I went to the oral surgery on Monday again to have two other wisdom teeth removed. This time, the experience was much better than when I went in December, so either one of my nurses called the staff out on their inappropriate behavior in December, or Dr. van G. has much better communication skills than Dr. D.

I arrived a little late and didn’t have a bar code appointment card with me, so I was waiting in line to check in at the reception when a nurse called me on my cellphone asking where I was. I told her that I was waiting in line at the reception, and she came down to take me into the surgery room. This time, everyone involved introduced themselves before starting the procedure. As it turns out, there were both a nurse and a medical assistant, so maybe that accounted for my assumption that someone was being in training in December. When I was getting into the chair, the dentistry lamp hurt my eyes, which I pointed out. The doctor shifted it somewhat so that it wasn’t shining right into my eyes anymore as he was giving me the anesthetic. I also didn’t have to ask for an operating sheet over my face this time.

During the procedure, Dr. van G. explained what he was doing. This was nice. I also didn’t have to constantly overhear mumbling between the doctor and the medical assitant, and, when it did happen, I could understand why given that the assistant had introduced herself.

The procedure itself went as it should have gone. My upper wisdom tooth was very easily extracted and the wound is barely noticeable and didn’t need stitching. It also didn’t hurt at all. The lower tooth had to be extracted in several parts and some bone had to be drilled out, because the tooth was hidden under a lot of tissue. That was rather annoying, given that dentistry drills obviously are quite overwhelming. But it was less bad than it could’ve been, since at least I knew what was happening. This wound did need stitching and did start to hurt a little after the anesthetic had worn off, but not nearly as much as the doctor had predicted. In fact, he recommended I continue taking pain relief (paracetamol this time, so thank God no yucky ibuprofen with fake orange taste) for a while – I took two paracetamol tablets an hour before the procedure -, but I actually didn’t need any painkillers at all.

Autism, Intellectual Disability, and DSM-V: It Isn’t About Activism

Harold L. Doherty of Facing Autism in New Brunswick had a post up yesterday about the proposed DSM-V criteria for autism spectrum disorders. He likes the fact that, though autistic disorder, Asperger’s, and PDD-NOS will no longer be seen as separate disorders, there will finally be a determiner for severity. This, Harold claims, will provide some relief to people affected by severe autism. I do not see why, in all honesty, since the LFA/HFA distinction is still in common usage everywhere except in specific autism circles (ie. some branches of the autistic acceptance movement). I think that, given how arbitrarily the proposed DSM-V criteria define severity, autistics will be quite able to ignore the entire distinction, and it is not at all unlikely that some neurodiversity activists will be diagnosed with severe autism based on a DSM-V assessment, because the severity determiners are so ill-defined. For example, constantly engaging in stereotypical motor movements, might make you severe on the repetitive behavior axis, but so would being completely obsessed with your special interest to the exclusion of, say, eating, basic self-care and sleep. In the social communication domain, being unable to speak would probably make you severe, but what about people who completely isolate themselves in their own world, even though they can technically speak? Maybe if they had a special interest in neurodiversity blogging, that could be considered social communication, although I am not sure how the DSm-V will be dealing with autistics’ generally better typing/writing skills than speech. I don’t see why either of these severity determiners will magically change the world’s presumed view that Ari Ne’eman, Alex Plank or I for that matter are exactly like Harold’s son. For the record: there is no need to magically change this presumption, since to my knowledge it doesn’t exist. All that autistic advocates have said, is that the breaking down of the autism spectrum into arbitrary categories of “classic” vs. Asperger’s, LFA vs. HFA, is quite nonsensical. The DSM-V proposition of a severity indicator, will not change that.

Harold continues to criticize the proposed new DSM-V criteria by pointing out they neglect to acknowledge the existence of intellectual disability along with autism. So far, I agree, and I think it warrants mention, along with other common “non-core” symptoms, as optional modifiers, just like disturbance of mood may be mentioned along with schizophrenia in DSM-V. I do not, however, agree that the current DSM does even a mediocre job of acknowledging intellectual disability. As Doherty admits, the only place in which it is mentioned, is in the criteria for Asperger’s, where it is mentioned that intellectual disability (or at least, an IQ below 70) can not be present. This statement by itself doesn’t say anything: people with autistic disorder can and do have normal IQs. I at one point blindly accepted his figure, allegedly drawn from a CDC report, that 80% of people diagnosed with autistic disorder have intellectual disabilities. However, quite frankly, this figure turns out to be pulled out of mid-air: the CDC report made no distinction betwen people diagnosed with autistic disorder and people diagnosed with Asperger’s Syndrome, and came to an estimate of 41% intellectual disabilities. Besides, statistics aside, a person with autistic disorder and an intellectual disability would under the DSM-IV still require an additional diagnosis of mental retardation. What the freak is Harold’s point, anyway? “We got to have a category for those pesky neurodiversity advocates who are Not Like My Child and must be segregated away from the scope of ‘real’ autism to prevent them from interfering with my cause?” The Asperger’s/autistic disorder divide never achieved that goal – even by Harold’s own flawed “statistic” of 80% autistic disorder people with intellectual disability, there are probably plenty anti-cure activists among the hypothetical 20% with autistic disorder and at least average IQ. Besides, intellectual disability will always be in the DSM, so it isn’t like there is no way, or will be no way in DSM-V, to diagnostically separate us without intellectual disabilities from those who do.

For the record: I am not opposed to including intellectual disability as some kind of optional modifier within the criteria for autistic spectrum disorders. If it happens, I do believe a number of other “non-core” symptoms should be granted the same status – like sensory integration disorder, executive dysfunction, anxiety, etc. I do believe acknowleding symptoms outside of the strict scope of repetitive behavior and social communication in DSM-V will enrich our understanding of how autism can present itself differently in different individuals. That is not a bad thing; in fact, it is part of the function the DSM is supposed to fulfill: provide clinicians and researchers with information relevant to the diagnosis of individual patients or study subjects. But one of the DSM’s purposes is emphatically not to facilitate some autism advocates’ political model of “real” autism.

My Experience Is Real, So It Isn’t in Your Medical Textbook

Yesterday, Chally had a post up at FWD/Forward entitled Only You Know Your Own Experence. In it, she discusses an interaction with a medical professional who, for whatever reason, insisted that she must be depressed or suffering from OCD because she woke up at 5:00 AM each morning and then checked her E-mail, and the insomnia was causing fatigue. My thoughts on this matter are so long that this blog post already turned out to be huge, and I’m not sure if there is a way I could frame them into a brief comment over there. My thoughts are very complicated, too – I, in fact, do not have the ability to either interpret my body’s or mind’s signals or communicate them in an effective enough way to make sense to medical professionals a lot of the time -, but noncmformity to whatever a doctor has read in their medical textbook (or wherever they got their stereotypes from) certainly plays a huge part in my reluctance to seek out medical attention.

Most of the “textbooking” happens in mental health, but in physical medicine, my inability to interpret and/or communicate my bodily symptoms, combined with the fact that I have too often not conformed to whatever my general practitioner expected to be wrong with me, has caused some reluctance to seek out care from them, too. It feels rather embarrassing to go see your doctor with something you have trouble communicating about and then find out that, since you again didn’t conform to whatever they thought you had, you are being sent home with an official “No idea” status and no treatment again. This is of course largely my own interpretation, in that I was never openly told that I made a fuss out of nothing or was wasting my GP’s time with another way too vague complaint. I have also recently had a few good experiences with my current institution GP, who at least tries to provide treatment for the abdominal discomfort I’ve suffered from since 2007 (unsuccessfully so far, but I’d assume that’s not her fault). As a side note, one of the reasons I didn’t get care before is that I was told not to make a fuss out of it since the bloodwork my former institution GP had ordered, was fine, but it was a nurse, not a doctor, telling me so, and my own embarrassment did create barriers here, too.

In mental health, “textbooking” is the reason I don’t seek out care on my own initiative at all, and probably will not do so anytime soon. Here, lack of knowledge is not a problem: I probably know at least as much about the care and treatment options for my condition as my current professionals, and I know way more than the people at my former ward. Trouble interpreting and/or communicating my own problems does play some part, but not nearly as much as in physical healthcare when relative to the fear of being disbelieved for not meeting the mental health professional’s standards of what I “should” be experiencing.

First of all, there is the possibility that a mental health professional believes that there really is no place for autism in the mental health system. They are right in the sense that, unlike, say, depression or psychosis, there is no standard medical or psychological treatment that can be tried out (and then a second and third and … option if that treatment doesn’t work), at least not that I’m aware of. There certainly is no cure. But that is something quite different from saying you have no reason to seek out mental health services. In fact, some symptoms and coexisting issues respond quite well to intervention. It’s just that there is no treatment “for autism”. No treatment “for autism”, however, does not mean no possible intervention for any complaint an autistic might have. Of course, in some settings – like the acute psychiatric ward, where it was hammered into me that my diagnosis meant I had no business seeking out care -, professionals do not and should not be expected to have knowledge of the care or treatment options available to people with non-acute disabilities like autism, but “I don’t know” sounds very different from “Shut up, you’re fine”.

Then there is the branch of mental health professionals who conform to the joke stereotype of medical specialists: A specialit thinks that you have what they treat. So far, all professionals who fall into this category, have been psychiatry residents, but I don’t have a reason to think psychologists, psychiatrists and other professionals should be exempt from this form of denying your reality by the mere fact of their profession. There, I just realized how coincidental Chally’s waking up at 5:00 AM was: in 2007, I suffered from pretty bad insomnia and consulted my doctor (one of the ward’s psychiatry residents) on it. At the time, my usual pattern of sleeping involved my going to sleep at around 11:30 PM, waking up at 2:00 AM and then lying awake for most or all of the remainder of the night. “Hmmm, that’s rather strange,” the doctor commented, adding: “If you’d woken up at like 5:00 AM it might’ve been indicative of depression, but not if you wake up in the middle of the night.” Note that, while insomnia (or hypersomnia!) is a DSM criterion for depression, it isn’t specified exactly what type of insomnia you should be suffering from. Also note that, even though I at the time suffered from suicidal thoughts, I had too few other symptoms of depression to warrant a diagnosis even if insomnia was counted. Incidentally, I have lately been waking up at 5:00 AM, and it is no indication that I am depressed. The doctor also wouldn’t believe me when I said I’d developed tolerance to the temazepam he’d prescribed about a week before, because “you shouldn’t have a problem the first three weeks.” Well, fine for you if that’s what you were taught in med school, but until humans are being programmed there in order to fit more neatly into medicine’s boxes (which time I hope not to live to), I know my own body better than your medical school instructor does.

By itself, the notion that you do not meet the (stereotyped) criteria of a specific diagnosis, is not a problem. I never said I was in the DSM or your medical textbook, after all. However, it gets troubling when this not meeting stereotypes is used against you to prove that you are somehow faking or in any case not having “real” problems. This tactic was used against me many times at my former ward, and really has destroyed my belief of ever being taken seriously by a mental health professional. Even though my current psychologist and the ward psychiatrist have so far never used this tactic on me, I am still waiting for the other shoe to drop. These games were pretty prevalent at my former ward, and I am not sure which example to pick. Maybe the time in the spring of 2008 when my obsession with the prospect of death was at its worst, and was mislabeled by a nurse (allegedly at the suggestion of my doctor) as something treatable with antipsychotics. The same doctor who allegedly suggested that (which, if she really did make that suggestion, she should freaking be checking with the physicians’ pharmacological guide!), actively and quite hostilely denied I was at all unwell two days after she allegedly made the suggestion. So, one day you can be a potential candidate for a powerful drug, and two days later, you are faking feeling bad? My inclination is that she really thought all along that I was faking and made the “suggestion” to scare the heck out of me, which wouldn’t have worked: I am not intimidated by the suggestion of drugs, since, even if it’d end in a prescrption (which it never does in these cases), I’m still the one deciding whether or not to swallow the pill. If you really want to scare me, suggest that seclusion might help instead.

So-called depression, which I do not and have never suffered from, is a very common target for this game-playing. I feel that this is somewhat discriminatory to people who do have clinical depression, since really their illness should not be used to show brats like me that we’re fake. Beside the waking up at 5:00 AM or not stupidity in 2007, the worst of psychiatry’s games with “textbooking” and fake symptoms comes to mind, which occurred in December of 2008. I have written about this event before, but cannot remember when. It involved my having had a particularly bad day, at which point a nurse who didn’t know me well decided that I was depressed. Of course, I know that a major depressive episode should last for at least two weeks, but it doesn’t matter, since I didn’t exhibit any signs of depression anyway. The nurse got hold of the new psychiatry resident, fresh from med school and only on our ward for two weeks. He bombarded me with the dreaded questions, which, if I had any susceptibility to depression to begin with, made me immune to it by 2007. No, that’s a joke. The suggestion of drugs was made, of course, but only briefly, as he would confer with the psychiatrist. Having had, among others, the obsessive-thoughts-as-indication-for-antipsychotics experience, I knew that this was a game, but that didn’t lessen the guilt I was feeling. In fact, it was worse this time, because now I did know for certain (which I naively didn’t the other times) that the decision that I was faking had in fact preceded the decision that I wasn’t in the DSM. In fact, I have always suspected that the nurse was trying to teach me to be happy with a useless treatment plan, since one was coming up and he always said these meetings are not supposed to be useful anyway except for this time. For once, the best thing that could happen was that it was entirely useless. This did happen, and I was tautht to appreciate it, but I was also definitely taught to mistrust any treatment “suggestion” made by any mental health professional.

There are, of course, two components to this obvious game-playing that could mean that maybe not all mental health professionals are to be mistrusted: the fact that, in all cases, some suggestion of drugs was made, and the fact that, in all cases, I was “textbooked”. Both of these aspects do have consequences, but not to a significant extent. Regarding the first, I don’t tend to presume my psychologist is serious about my treatment, either, even though so far usually she follows through on her ideas (and in some of these cases it turns out I didn’t do my “homework”). In fact, even though I’m supposed to have biweekly appointments with her and she’s relatively consistent on them, I never wanted to take the initiative to ask her to schedule a follow-up appointment until a few months ago, in case she was thinking I was wasting her time and was playing a sophisticated game to show me. In this case, it really took up a lot of my courage to send her an E-mail asking for a new appointment after she’d been on sick leave a few weeks ago. The ward psychiatrist (thank God we don’t have residents) I mistrust more, and I think this is in part due to his profession (and the association with [fake] drug suggestions), but I also only consulted him once (for non-fake sleeping pills, and yay for no suggestion that I should or should not wake up at 5:00 AM!).

Regarding the other aspect – the being “textbooked” -, I do tend to cut someone some slack for giving an accurate descrption of my symptoms when they make a treatment suggestion, even when I don’t fully believe they are sincere. The times that mental health professionals actually took the time to understand my problem before making a suggestion, after all, were also the times when that suggestion was sincere. Not always wise in hindsight, and not always even medically sensible (a low-potency neuroleptic now only approved for sedative pain control in some populations for sleep, OMG, psych residents!), but sincere. It also doesn’t always work the other way around: my inclination is that pretty much every psychiatric patient will automatically get a prescription for a PRN benzodiazepine tranquilizer, and at least I have no clue how or why I earned mine, for example. But, so far, an accurate, non-textbooked reflection of the reason I consult a mental health professional, has been an indication of sincerity. Not enough that I will not mistrust people who make accurate assertions about my situation, but at least I can say there is a fair correlation.

There is, of course, also the possibility that stereotyped, inaccurate, textbookish reflections of my problems are no indication of unsincerity at all. In fact, you will need to fit in at least somewhat with a textbook description of something if you need to be diagnosed with anything at all. But when you didn’t come into the professional’s office to be diagnosed with a mental illness, it is really annoying when they pull out the DSM. This was in fact my very first adult experience of visiting a psychologist. It was not at mental health, I did not have any diagnosis, and I was not intending to get one either. When I first had an intake appointment at the blind rehab center, my tutor had beforehand mentioned that I had what he may’ve considered imaginary friends; I honestly have no clue what he thought of the “ladies” really, but in any case, he’d told the psychologist that I had them. I didn’t know this, but it didn’t surprise me, given how often the tutor had inquired about them. I was, therefore, prepared to be asked about objects in the closet, forgetting how I got to my destination (ie. highway hypnosis, a very normal experience!) and, oh goody, multiple personalities. Well, I was right. Of course, I knew that I didn’t suffer from dissociative identity disorder, and I was prepared to defeat her assumption that I did. Through this, unfortunately, I also had to minimize the very real nature of my experience. I didn’t want to be thought of as suffering from DID, because I would probably not have been accepted at rehab, but in defeating this idea, I had to deny the actually relevant impact this experience had on my situation. Not having the words to articulate the issue without “ladies”, I just left it alone and pretended it didn’t exist, when all the while I was thinking: “If for heaven’s sake you would jsut put aside that DSM and listen, maybe I could tell you what is actually relevant to the reason I come here, which is blindness rehab.” The topic did come up once durign my rehabilitation, but in a rather awkward psychology session with way too many topics to be discussed (why is it that all psychologists seem to need to lump together a dozen controversial topics in one session?). Probably, these psychologists were “textbooking” me with the intention of getting an accurate idea of my situation – unstructured interviews would never have worked for me anyway -, but the consequence was that I did have to deny my real situation in order to avoid a stereotype.

As I said above, some “textbooking” is needed, especially in medical practice or mental health services. You will need a diagnosis in order to get treatment, after all. However, it gets problematic when what the diagnostic guidelines say gets in the way of getting an accurate understanding of a patient’s situation. It gets even more problematic when the guidelines are used to deny a patient’s very real experience. I am not in the DSM, ICD or whatever medical guide you’re using. Maybe that’s because I’m real.

Passing for Less Disabled

Chally at Zero at the Bone has a post up about invisible identities and the effects of passing. Passing is the active or passive quality that gets people in minority groups to be perceived as part of the dominant group. Examples would be someone with an invisible disability being passed for abled, someone in a racial minority being perceived as white (in a whitecentric society, of course) and someone who is trans or non-binary being perceived as having a cis gender identity.

Because I belong to the dominant group in many of these areas, the only situation in which passing is relevant for me, is disability. In my experience, it does not involve passing for abled entirely, but passing for less disabled than I am. This means that I at once still faced some disablism, and escaped a hell of a lot of it that I would encounter once no longer passing.

Passing is a complicated matter, and, when it is “imcomplete”, it gets even more complicated. Passing for partially sighted when you are blind, for example, gives you just enough sighted privilege to be excluded from or treated like a supercrip by the blind community, but not enough sighted privilege to be even conditionally fully included in the sighted community. It has an advantage in the blind community, where the hierarchy of vision rules. I, apparently, at one point eagerly participated in the competition of sight, although I never made it high on the hierarchical ladder. I would have to consider this a form of internal disablism, and it includes the same sterotyping, marginalizing and exclusionary practices that all people perceived as disabled face from a dominantly abled society, and the same privileges awarded to people who successfully pass for whatever is deemed the “standard” within this disability group. Among the blind, this depends on which exact community you participate in: in certain blind organizations, the totally blind, especially if they have superblind qualities (ie. perfect mastery of alternative techniques and/or fabulous accomplishments), stand highest in the hierarchy, while at my former schools for the blind and at the rehabilitation center I attended, those with the most vision were always dominant.

Within the field of disability, people who have one disability are also privileged over those who have multiple disabilities, and, again, passing awards you privilege. There is, in this sense, again a lot of internal disablism, with some of it motivated by malice, some more by inconvenience (“We don’t have enough time to advocate for people with multiple disabilities.”), and some stemming from ignorance about the reality of people outside one’s own narrow scope of specific, single disability. Before any singly-disabled person objects that they aren’t the Big Bad Oppressor, I’m not saying that. In fact, I myself at least used to be guilty of this same form of disablism, in some pretty nasty ways, such as my bullying a girl with visual and intellectual impairment for her “dumbness” in elementary school, and I’m likely still affected by stereotypes.

However, let’s face facts: advocacy groups of disabled people tend to focus on people with a specific disability, thereby being more successful in fighting for barrier removal for and against discrimination of people with that specific disability, sometimes on a conditional premise that people with that disability can accomplish the same achievements as non-disabled people if given proper training and opportunity. This premise, of course, excludes people who do not meet these standards, which are more likely to be people with multiple disabilities. But even if a disability advocacy group does not set exclusionist standards for representation, people with multiple disabilities will still have a harder time being heard, simply because they make up a minority within the minority. That way, disablism rooted in ignorance may occur: the advocacy group simply didn’t think of advocating for the needs of people with multiple disabilities, or lacked the resources to know how to advocate appropriately. Therefore, barriers are kept in place that may have been struck down for those in the single-disability movements.

Passing helps a lot in such circumstances. For example, I would never have graduated from, and may not have been accepted at my high school if I weren’t passing for neurotypical. Inclusion, at the time, was voluntary in the Netherlands, and even now that there is legislation promoting it, those who are somehow “too difficult” can still be excluded. I bet a dual disability of blindness and autism falls under the category of “too difficult”, but because I passed for neurotypical, I was accepted. In this sense, passing has its advantages.

Like in any other situation where passing is involved, however, it has its flip side, too: the privilege awarded to those who are passing, is conditional. You will only be privileged as long as you pass. This puts a huge burden on the person who is passing: if they no longer pass, they will not only lose the benefits their passing privilege awarded them, but they also run a risk of being shamed, blamed and offended for no longer passing, even if they never made a choice not to try to pass anymore (or if they’d never been trying to pass in the first place, but had been passed by others anyway). For example, when I passed for neurotypical, this was seen as a good thing by non-disabled people (and most blind people), and increasingly having been unable to pass has led some people to be pretty hostile towards the fact that I’m not “just blind”. This started long before my autism diagnosis, by the way, sometime around 2003, but the autism diagnosis, and the fact that I embrace autism as part of my identity, hasn’t helped. Maybe, of course, I would’ve been better off if I had equally embraced my autism but hadn’t been institutionalized. I am not sure about that though, since the people who now despise my autistic identity, did so when I still lived on my own, too.

Related to the blaming of people who used to be passing but no longer do, is the assumption that passing or not passing is always something intrinsic to the person’s own characteristics or choice: either your disability has gotten worse so you can no longer pass (for example, if you start using a low vision aid because you can no longer read the newspaper without it), or you have chosen not to pass anymore. The first is usually more acceptable than the second, although which is which cannot often be objectively assessed. For example, if someone gets a terrible headache and eye fatigue from reading the newspaper without a low vision aid and it takes them twice as long, this could be perceived as either a matter of the visual impairment becoming worse, or as a willful choice not to put effort into reading newspapers. However, as Chally also points out, this view of passing as internally generated fails to acknowledge the fact that it’s the non-disabled people who decide what passes you. For example, if you visibly struggle to read the newspaper but are not using a low vision aid, some people may think you are visually impaired, but some may also think you are just a slow reader, forgot your reading glasses or need a new prescription (and the need for reading glasses is not usually perceived as a disability), or even that you are willfully annoying them by readind the paper that slowly. Some people may not perceive someone who uses a low vision aid as visually impaired, while some may recognize the device and decide that the person must be visually impaired since they are using it. This subjective view of what is and is not perceived as a sign of disability, is even more prominent when talking about mental or neurological disabilities or invisible chronic pain conditions like fibromyalgia. Pain may not be seen, if the person is trying not to complain, and even if it is seen, people may automatically attribute it to the wrong causes, or assume the person is exaggerating. Autistic behavior may be viewed as a sign of disability, as a sign of wanting to annoy other people, as “just weird”, or as something indicative of a presumably positive trait, like perseverance or intelligence. These attributions are not inherent in the person’s level of disability or the disabled person’s choice to pass or not to pass. They are other people making these attributions, after all. The disabled person passes because somene else perceives them as non-disabed, not because they themselves wear a sign that reads “I Am Not Disabled”.

Michael Crisafulli’s Autism Doesn’t Turn His Trial Into an Autistic Rights Issue

Recently, an allegedly autistic, 13-year-old boy shot his father. I haven’t seen any neurodiversity coverage of it yet, but then again I don’t read the major neurodiversity blogs all that often. The boy’s alleged autism is really only a minor part of the story, in the sense that his grandmother’s statement is not verified anywhere else. I happened to come across the story via an autism news site, so that’s how I know.

Should it really be about autism, actually? I don’t think so. There are enough controversies in this story without adding autism into the mix: the father’s huge gun collection, from which Michael got the gun he shot his father with, for example. Gun control is a really controversial issue in the U.S., and as a European it is probably calling for a flame bomb if I suggest people shouldn’t be owning handguns, let alone keeping them within children’s reach. Nonetheless, I can’t help but wonder how many shootings can be prevented if fewer teens have access to their parents’ legal weaponry?

Another issue is the fact that Michael’s crime, rather than his age or any of his characteristics really, get him to be tried in an adult court. Children over ten who are charged with intentional homicide are automatically tried in adult court under Wisconsin law. It is possible for the defense to request the case be moved to juvenile court based on individual factors, such as age or mental health. This is where Michael’s autism is brought in: it may be used as an argument to have his case tried in a juvy court. While I am open to the possibility that the disabilities caused by autism could be used as arguments to try someone in juvenile court rather than adult court – in the sense that maybe their disabilities diminish their ability to understand what is happening on a level expected of someone their age -, I also think that any 13-year-old shouldn’t be treated as an adult. Put simply, the crime they committed (ie. intentional homicide) doesn’t make their brains any more adult-like, unless the treshhold for “intent” is really high and you have to use sophisticated logic normally expected only from adults to be charged with this crime. In that case, however, I would assume Michael Crisafulli wasn’t being charged with this crime this easily. I would say that somone’s motives, in a few exceptional cases, could lead to a minro being charged as an adult (and vice versa), but that these motives are independent of what crime was being committed. In the Netherlands, by the way, youth over sixteen can be tried in adult court (and people up to age 21 can be tried in juvenile court) in such exceptional cases, but the default is that regardless of the crime people under eighteen are tried in juvenile court and people over eighteen are tried in adult court. I think this is the best possible system we can have: the cut-off has to be somewhere and, if occasional exceptions are allowed for childish adults and adultlike teens, this will allow most people to be tried with fair account being taken of the differences their age causes. In any case, I don’t see any reason to try a 13-year-old like they’re an adult, regardless of mental health or any other circumstances. Juvenile court is there for a reason, after all.

Really, I am dreadfully awaiting the curebie responses about how this indicates that obviously autism is bad, or maybe I’ve missed them already, since I didn’t check out Harold Doherty’s Twitter or blog over the week-end. This is one child who committed a crime, and we do not know at this point whether autism contributed. As I tweeted to Mr. Doherty a few weeks ago when another autistic was prominently focused on for conspiring to kill his parents, the next time an NT commits a similar crime, I will call out for a cure to neurotypicality. Too bad I don’t check out regular news sources much so that I haven’t found another person committing a similar crime between then and now.

In any case, as much as I dread this, I’m not sure whether I dread it more than neurodiversity supporters who call on Michael’s release simply because he is autistic. I hope really that these people will focus on the broader issues affecting this case, like gun control, children being tried as adults and possibly the problems that led Michael to commit the crime, if they are applicable in a wider framework. The problem is that we know too little about the case to be making reasoned judgments about some of these issues. But we know even less about Michael’s presumed autism, and for heaven’s sake I don’t want this to turn into another Gary McKinnon-like hype. As a side note, if anyone wants to know why I am not advocating for him, check out the excellent McKinnon mythbusting Sarah of Cat in a Dog’s World has done. It isn’t about Asperger’s in his case; it’s about hacking, and, if you think it’s wrong that the UK signed a treaty to extradite its citizens for cybercrimes agains the U.S. government, discuss that rather than poster puppeting Gary McKinnon for your non-cause (because of course most of these people don’t write about cybercrimes at any other time really). In the same way, if autism at one point starts to be relevant in this case, for example if it is found out that it is a significant contributing factor to the crime, or if Michael is treated unfairly based on it (eg. if he doesn’t get reasonable accommodations in prison), I really hope that autistic advocates make a big deal out of it. However, as long as the main issues are relevant regardless of whether Michael is autistic or not, focus on these issues please. If I can find more information, I will do another post about the Wisconsin (and possiblly oteher states) children-tried-as-adults nonsense, since that really stunned me. However, this was the first and last post in which I brought up autism in this case unless it is ever found to have any relevance.

The Social Model of Disability and Varying Experiences

Recently, there was a Question Time post / discussion thread at FWD/Forward about changing experiences of disability since birth or since whenever your disability popped up. I was not sure how to respond. “But,” I thought, “my disabilities have always been the same. How can I write about changing experiences?” This is as untrue as the moon being made up of green cheese (unless you’re a philosopher). Of course my experiences of disability have changed. Both objectively and subjectively, the social consequences of my medical conditions – which is what disability is all about if you embrace the social model – have changed. Do I need to have a medical justification for that? As in, do I need different diagnoses, changing numbers that describe my “functioning”, etc., to account for changes in my daily experience? Taking the social model of disability, I don’t. And, quite honestly, I could never objectify the changes in the experience of disability I’ve had. After all, I never had objective numbers on most aspects of functioning either now or at any point in my life.

The only things I have objective numbers on, are IQ and visual acuity. My IQ presumably “dropped” by 25 points between age twelve and age fifteen, with approximately ten of these points being attributable to the Flynn effect (ie. the fact that average IQ in a population tends to rise about ten points every thirty years, which tests are accommodated for); the other fifteen points may or may not be attributable to one or more of a multitude of external, internal and chance factors that could or could not be indicative of an actual drop in relative (!) intellectual performance. I was administered another IQ test at age nearly nineteen, by the way, but the report on that test didn’t include numbers. As for visual acuity: it gradually decreased from around 20/400 when I was little to just light perception now. I do not know whether any of the changes in these numbers had any direct effect on my functioning (the times I reported vision loss having an effect, the lessened acuity wasn’t objectified). Besides, they are only two of an almost infinite number of aspects of my disabilities that in most cases can’t be objectively measured in any valid and reliable way. There are, for example, still no reliable tests for social or emotional intelligence, despite what popular sites would have you believe. Tests for executive functioning exist, but usually have very poor ecological (ie. daily life) validity. Tests of functional vision are usually not useful on people who are almost totally blind. And so on and so forth. In short, medical or psychological tests may say some things aobut a person’s abilities and difficulties, but they do not objectify people’s daily life strengths and weaknesses.

Much more importantly, the creators of the medical and psychological assessment tools for our daily functioning or health, are most likely pretty much clueless about the social model of disability. Because the WHO acknwoledges it to some extent in its International Classificaiton of Functioning (ICF), most professionals will have heard of the fact that, besides medically objective limitations, a condition comes with social disabilities. Having heard of this, however, of course will not get an assessment developer to understand its full impact from behind their office desk. And even if some of these people happened to magically understand the full range of social barriers for people with the disability they were interested in, they could not translate these effects into numbers? Should every inaccfessible building a wheelchair user has to enter, be counted? Every minute an autistic has to spend in a sensorially overloading room? Every page of print a blind person has to read? Impossible. And these are the basics, the inaccessibility issues that effect most people with a given disability. What about the individual factors? It is possible that, if people are optimistic, they will accomplsih more than if they are pessimistic. (Don’t be so ignorant to just tell every pessimistic person with disabilities to “cheer up”; it isn’t that simple.) Experiences are different for someone who lives alone, in a large group (either institutionalized or through some other arrangement), with a partner and/or children, with their own parents, etc. The sort and amount of employment, volunteer work or other activities a person has access to, will have an impact. People around the person with disabilities, and their attitudes towards the disabilities, will make a difference. And the list continues almost endlessly. These are not ICD-10 or DSM-IV codes, results on tests, or anything like this, and they can’t be. They shouldn’t be. Life is dynamic for everyone, including people with disabilities. Every life event can change a person’s experience of themselves, including their experience of disability. How we deal with these life events, also varies from person to person, and this also may not be reflected in, say, personality tests.

Besides, of course, even if a person’s way of dealing with life was reflected (to some extent) in personality tests, these would not be accepted as an objective measure of disability in most cases, even if it was very significant (eg. if a person has a diagnosable personality disorder). People are assumed not to be able to change their visual acuity but to be able to change their personality. The same holds true for certain social circumstances. For example, people are usually assumed not to be able to help losing their job in an economic crisis, but they are assumed to be able to help being unemployed due to discrimination. This is a false divide, too.

I am not saying that the effects of social circumstances are entirely beyond a person’s control, or that a person cannot work on coping strategies that will help them deal with difficult circumstances. This will also vary from individual to individual. What I am saying is that social circumstances should not be discounted when trying to understand a person’s experience of disability. They are usually what create the real-life disability much more than the objective measures of health.

Simon Baron-Cohen Policing Aspies’ Reading Preference

Sarah of Cat in a Dog’s World had a commentary on Simon Baron-Cohen’s Asperger’s adult criteria recently. I did not know anything about them except that they require Asperger’s people to have difficulty in all areas of daily living, rather than just one, and that they consider depression a mandatory feature of Asperger’s. Given that I was asked to fill out the autism spectrum quotient test, developed by Baron-Cohen, as part of my diagnostic assessment, I should’ve known what would come as part of a specification of diagnostic criteria, ie. the insistence on lack of what Baron-Cohen sees as imagination.

Sarah correctly points out many of the problems with the insistence on preferring non-fiction to fiction and preferring museums to theaters. Both of these questions were on the AQ-test, and I at least answered the former affirmatively and am not sure about the latter. I, for one, do prefer non-fiction. In fact, it’s been a year since I last read a work of fiction – and it was really a fictionalized account of something real -, while I’ve read tons of non-fiction books since.

However, I have the exact same problems as Sarah with Baron-Cohen’s categories of “acceptable” fiction. To me, preferring sci-fi or historic fiction does not indicate a lack of imagination at all. In fact, I for one believe it requires quite a bit of imagination not to go mad at the sheer impossibility of what goes into sci-fi books. I happen to hate both sci-fi and historic fiction more than any other type of fiction, for the very reason that I have no way of relating to them.

But apparently, it makes you imaginative if you can more easily relate to a novel based in real life – because, presumably, it isn’t your life, so you aren’t supposed to be able to empathize with the characters -, than to a robot in a science fiction novel. Am I somehow assumed to be more able to empathize with robots than with other humans just because these humans don’t share my neurotype? In that case, apparently Baron-Cohen has pseudoscientifically diagnosed all robots with Asperger’s. Otherwise, what sense would it make that I could empathize with a neurotypical robot but not a neurotypical human?

The one work of fiction I read last year, as I said, was fictionalized reality. It was Elizabeth’s Nickson’s novel The Monkey-Puzzle Tree, about the so-called Montreal Experiments, a series of horrific experiments in mind control carried out in a Montreal psychiatric hospital by well-known psychiatrist Ewen Cameron in the 1950s and early 1960s. In fact, when I wrote equally fictionalized stories in high school, they were not called fiction, but autobiographical, but maybe they had been considered fiction by people who didn’t know me. So, if you didn’t know that Nickson’s mother, like the protagonist’s, was a victim of the experiments, would the book be considered more fictional than now? Is it indicative of imagination that I was intrigued by the book, even though I don’t remember most of the fictional details and remember all of the details about the actual experiments? Probably, I get substracted some imagination points if you know that I would rather have read a purely non-fictional account, and didn’t like not being fully aware of which exact aspects are real and which are not. For example, in the novel, the protagonist’s mother goes to court to testify against the CIA, who were behind the experiments, and offered the breaking testimony that earned the victims much higher compensation; in reality, I don’t think Nickson’s mother testified before a court, and I find it annoying that I therefore am unable to tell how the victims got whatever compensation they did get. On the other hand, I am not at all interested in the non-fiction behind the previous work of fiction I read, the well-known Dutch novel Komt een vrouw bij de dokter, even though it is rather easy to look a lot of it up on the author’s site. The work was recently made into a movie, and I heard a lot of character discussion that I had entirely missed in the book. On the other hand, I still rely upon whatever I read in that book for anything I never wanted to know about imflammatory breast cancer, and have actually looked at the ACOR listserv database to see whether the E-mail list mentioned in the book exists (it does). Neither of these works are anything like sci-fi or historic fiction, but does it indicate fabulous imagination that I enjoyed them?

The museum vs. theater bit is equally strange. I am not sure how I answered the question when it popped up on the AQ-test (and which of the four times I took that test, by the way, since I took it online three times?). In real life, I like neither in general, since I pick both exhibits and theater shows individually and am very critical of both. However, when going back the last so many years to the outings I enjoyed, I have to say more are theater-based than museum. I am not sure though whether this indicates a preference, since most museums are inaccessible to the blind and the theater shows I tend to enjoy, are mostly particularly realistic. That doesn’t count though. Maybe if I enjoyed science fiction theater (if that exists at all), with as many spaceships and robots as fit on the stage, that would’ve made me unimaginative. Maybe then again I would’ve had some Aspie points substracted for not getting overloaded.

How is your interest in books, theaters or museums, indicative of imagination, anyway? If you still have some kind of fantasy world in adolescence or adulthood, you are considered childish or weird. If you have one in childhood, it is considered imaginative. Yet some Asperger’s girls (but Sarah points out correctly that Baron-Cohen doesn’t seem to care about girls) are quite known for this. I am no exception, notwithstanding my preference for non-fiction. Apparently, that makes me too imaginative to be an Aspie, right? Oh wait, that question wasn’t on the AQ-test so is apparently irrelevant. Imagination, after all, only counts insofar as Baron-Cohen can imagine it.