Of Autism and Sprained Fingers.

Standard

Apparently someone’s uncovered the “shocking” fact that as a teenager, I was (mis)diagnosed with schizophrenia. (They could’ve saved their time and read it on my blog, where I’ve mentioned it, but anyway.)

They might be unaware that this took place after an initial diagnosis of autism elsewhere, and that pretty much their sole evidence for the “schizophrenia” was that I was trying to convince myself I wasn’t human and had a fantasy world that I tried really hard to act out in my head as if it was real. (A pretty common thing for autistic girls to do as teenagers, according to Tony Attwood, and a really good way to end up with a diagnosis of psychosis in an autistic person.) They might also be unaware that the diagnosis also stated that I had been “psychotic” since very early childhood, and only “became schizophrenic” (i.e. started trying to convince myself I wasn’t human) more recently. How do you tell if a very young child is “psychotic”? It can’t be hallucinations or delusions, because those would be either invisible or indistinguishable from normal make-believe play. It would have to be the so-called “negative symptoms” — i.e. the things that are identical in appearance to autism. My parents, in fact, attempted to tell them that I’d been considered autistic because of these things, and they were told this was “childhood schizophrenia”.

They might also be unaware that this was the facility that told my parents that they, specifically my mother, had caused me to become “psychotic” and then “schizophrenic” as a result of a poor parenting style. And that also forced me to “admit to” hearing voices I didn’t actually hear, and was shut down because nobody would send their kids there anymore, especially after a guy died there. So anyone who supports the rulings of a facility like this one is supporting the refrigerator mother hypothesis of autism, and the few throwbacks in the mid-nineties who still believed that sort of thing in America (yes, it wasn’t entirely dead by then). And supports a psychiatrist who has been successfully sued for malpractice before.

When I was later sent to special education, I was sent there as someone who’d had a number of diagnoses, and autism and schizophrenia were both listed among several others. Because I had been trained, by a guy who among other things believed in involuntary trance induction as part of his “Ericksonian psychotherapy technique” (also apparently believed in beatings, etc), to “admit” to all sorts of experiences and beliefs I did not have, and I was now terrified to go against him (he had told me he would go into my head, kill the person I was, and replace me with someone else, and that I would die if I disobeyed him — and I’m the one who was supposedly out of touch with reality, hmm), it was generally accepted that he was right about me, and I was encouraged to write about myself that way. (This is called an iatrogenic problem, by the way, and the patient is not generally considered at fault for it.) Heavily trained echolalia, by the way, is no substitute for communicative speech, as became obvious when I had life-threatening medical problems while under this guy’s “care” and I didn’t say anything about them. (This doctor also trained another person he diagnosed as schizophrenic, to recite obscene phrases about Jesus and the Virgin Mary. He found this amusing.)

However, when I got old enough, I asked to go off all of my medications. Amazingly, something strange occurred: I did not hallucinate (except during seizures, which were subsequently treated, and abuse flashbacks, which are pretty discrete events). I did not hold any particularly bizarre beliefs. After a period of withdrawal symptoms, I gained abilities, rather than (as threatened) losing them. My psychiatrist (who’d known me since pre-schizophrenia-dx days, and who I was only transferred away from — to the place where they diagnosed schizophrenia — for insurance reasons) decided there had been some misdiagnoses along the line, and we worked out together what they were. I gained more and more ability to tell people what had been happening in my head the whole time, rather than either not being able to say anything, or only being able to say what I’d been taught/forced/encouraged to say, or (in one intermediate stage) being able to say part of what I meant but having it come out wrong… and I took (and take) that ability very seriously.

It should also be noted that the developmental services systems in both states I have been in, have had to have proof that I was developmentally disabled. If they did not have that proof, they would not have accepted me as a client (I know a guy who can’t get services through the California system, despite having four different developmental disability labels, because his psych label is said to take precedence, so this is not something they would have accepted without documentation that prior to the age of 18 I already had a diagnosis, which I had from the age of 14). Both are fully aware of my past diagnoses, so much so that they’re mentioned in one of my individual program plans. So is the Social Security Administration. Last time I was given an SSI re-evaluation, I saw a psychiatrist there, who gave me a bunch of tests (including tests that autistic people tend to do really well on and non-autistic people don’t — and that I excelled at), asked me a few questions, and told me that he’d read my records and found it very sad that I’d been misdiagnosed in the middle of things there.

I also at one point wrote to one of the doctors at that treatment center and asked him what exactly they’d thought about the state of my communication at the time I knew him. I’d finally received documentation about what had actually happened to me, including gradual decreases in useful speech and voluntary movement throughout adolescence (which happens to some autistic people, including some with prior speech, and which were in fact the reason for an initial referral to a neurologist when I was 12 or 13). As in, there were official papers written on it, and such. (And I have now met people with Asperger diagnoses who can’t speak as adults because of things like this.) I wanted to know what on earth he had thought those things were (my previous doctor had coded them under “central nervous system disorder, not otherwise specified”, prior to knowing this research about this happening to some autistic people). He told me he had assumed they were due to “command hallucinations”. Nope, but that’s the level of thoroughness with which he checked his assumptions in general.

If I both believed that the word “schizophrenia” actually referred to anything (and after a lot of study, I don’t think it does), and believed that it fit me in some way that being autistic didn’t account for (which it doesn’t), I would be proclaiming my “schizophrenic pride” as thoroughly as I proclaim my “autistic pride”. As it is, since I don’t think either of those things, I still take part in some more generic “mad pride” organizations like Mindfreedom International (and I still have a psychiatric label — post-traumatic stress disorder).

I find it very interesting:

I have a sprained finger that is permanently crooked.

When I first showed it to a doctor (after it had already healed wrong), they thought it was a break, so I talked about it and treated it as if it was a break. It’s written up in some of my official records as a break.

They later x-rayed it and found out it was a badly-healed sprain, not a badly-healed break. I only found that out last year.

Suddenly, they no longer refer to it as a break, but they don’t give me any crap about the fact that they (and I) once thought of it and treated it as a break. Nobody else does, either, really. Nor do they question the fact that I don’t bother telling people it used to be thought to be broken. Yet when this happens in the realm of psychiatry, it’s somehow treated quite differently. Fortunately my psychiatrist is totally willing to admit his and others’ prior mistakes as mistakes, and leave it at that.

At any rate, the only particularly strange part of these events in my life is that the autism diagnosis actually predates the schizophrenia diagnosis. And I’d bet that’s happened to others as well (actually, I just realized that it happened to my friend Stan). At any rate, I have a friend who made up the acronym TAFKAS (The Autist Formerly Known as Schizophrenic), to describe this, because it’s such a common phenomenon. (In fact, until the year I was born, autism was not separate from schizophrenia in the DSM at all.) So being labeled “psychotic” is a trait I share with Donna Williams, Wendy Lawson, Larry Bissonnette, Laura Tisoncik, Mary Newport, Edgar Schneider, Georgiana Thomas, Sondra Williams, and many others, both speaking and non-speaking (and everywhere in between) at the time of that diagnosis. (For instance, look at Larry Bissonnette’s diagnostic history, he’s another mostly-non-speaking anti-cure autie with a plethora of diagnostic labels in his past, and who has echolalic speech that doesn’t necessarily reflect what he’s thinking.)

But go ahead and refer to me as crazy, if it makes you feel better. I do align myself with the mad movement as much as with the autistic one, and I’ve had many experiences in common with those described as the various psychiatric elaborations on the word “crazy” (as well as still carrying psychiatric labels beyond autism to this day). It just doesn’t mean I’m not autistic, any more than my finger wasn’t sprained just because people once thought I broke it.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

44 responses »

  1. But go ahead and refer to me as crazy, if it makes you feel better.

    Now wait a minute … you’ve been putting in some pretty good efforts trying to convince ME that you’re NOT thinking straight, now someone comes up with something that tends to support that theory and you try to refute it.

    Yep … I’d have to say your thinking is not 100% organized all the time, but, that’s cool … very few people have thinking that is.

    I’d have to guess they throw around that “schizophrenia” and “schizoeffective” diagnosis when they don’t know what the heck is going on. Sometimes they only have to go on what they can observe with their eyes and ears and with people with autism those are often not the best channels of communication.

    I have a finger that doesn’t straighten either … have NO idea how that happened …

  2. No, Axinar, that’s not what happened.

    I tried to show you that I cannot use a specific kind of cognition very well, but can use another kind extremely well. I did not try to tell you I’m hallucinating or that I believe all kinds of things I don’t actually believe (although the fact that people did certainly lends credence to the idea that I can look really confused about reality, which I’ve never disputed, the key word being “look”). I’m not sure why you’re conflating the two.

    Your response to me is like saying “Now wait a minute, you’ve been trying to tell me you don’t write Portuguese very well, and here someone’s coming along saying you don’t write English very well, and you’re trying to refute them.” As if there’s any contradiction there.

  3. The way I understand it, is that a schizophrenic way of thinking and an autistic way of thinking will be different, but to some people who are unaware of these differences, they may go by a few outside appearances and jump to the wrong conclusion. Hence why a fair few autistic adults were given the wrong diagnosis of schizophrenia as children.
    Ballastexistenz’s thinking and cognitive interpretations has never come across as being disordered from what she describes, in my opinion. Maybe (probably?) different from the majority of people, but how dull would things be if everyone thought the same?
    In terms of my own perspectives on thinking, I have no idea how my thinking compares to others. I see films in my head of situations and events that can get very vivid, but I have a running commentary of what is happening at the time. I don’t tend to follow auditory sequences (eg being given verbal directions) very well, mainly because when I get to a certain point I can’t see the directions in my mind so I forget everything. I find that if someone tries to explain something to me verbally, or even just showing me once I have difficulties in picking it up, but if given the time to try and work the thing out myself I often do far better. I still do the fantasy worlds, I’ve been imagining myself in medieval England for a good few years now :D. But that doesn’t mean I’m completely unaware of my surroundings. I can walk past people without recognising them but I’ll spot a small cigarette end, or a screw on the ground. Hence I’ve been said I have little situational awareness, when the truth is I am aware of my surroundings, I’m just not always aware of what other people are looking at.

  4. I think most doctors and psychiatrists probably DO realize that what’s happening internally for autistics and for people with schizophrenia is very different (or at least they should realize it if they really understand the DSM diagnostic criteria, and they SHOULD do so before passing out diagnoses). And I think most of them have their hearts in the right place: they’re not just throwing around labels for the sake of throwing around labels (except for the few who got into the field for the wrong reasons). They’re genuinely trying their best to get things right. But it’s always hard to know what’s really going on inside a person just based on what you see from the outside, especially when it gets to the fine line between two diagnostic labels that happen to look pretty similar from the outside.

    Unfortunately, in Ballastexistenz’ case, she got saddled with one of the more unethical doctors who intimidated her into “proving” his label right. I HOPE this is the exception, though unfortunately the medical and psychiatry fields probably do tend to attract people who already have power/control issues. (Though again I don’t think that applies to all of them.)

    However, even for medical/psychiatric personnel who don’t have power issues per se, some may still have issues with arrogance where they’re sure they can diagnose someone in 30 minutes flat (I would stay away from any psychiatrist who tried to claim this–if you need a diagnosis for some reason, it’s more important to get it right than to get it fast). Or they may lack experience in differentiating between diagnostic labels that initially seem similar. Or they may become overly invested in the idea that they have to project an aura of confidence at all times even when they’re not sure what they’re doing, as a way of helping to reassure nervous consumers. And they forget that there are still times that you just have to admit that maybe you made an error, or that no one knows everything including the presumed “experts”.

    Then, yes, of course every field has its share of people who just don’t belong there, ethically speaking. The one who pressured Ballastexistenz into saying things that weren’t true sounds like someone who should have lost his license over it.

    For anyone who is curious, I did a little poking around on google and found the following informational materials (from “official’ sources):

    http://www.uchicagokidshospital.org/online-library/content=P02581
    (about childhood schizophrenia)

    http://web.syr.edu/~rjkopp/data/dsm_criteria.html
    (autism; with differential criteria for schizophrenia)

  5. One thing I’ve found among a lot of people who’ve been in the psych system, no matter what their official or real label, though, is something like the following:

    They tell you what they’ve decided you have.

    They will not grant certain ‘privileges’ until you start acting the part.

    Sometimes that even includes things like Irit Shimrat’s experience of being stuck in a psych ward, pinned to the floor, thrown in an isolation room (while totally bewildered and hallucinating), and not allowed out until she found the “magic words” of “I believe I am sick and I believe your pills will help me.” (She later said she went in crazy but not sick, and then the pills made it so she was both crazy and sick.)

    But since “lack of insight” is considered such a distinguishing feature of various psych labels, one of the first things a lot of places get you to do is “admit” that you have whatever problems they’ve decided you have.

    That’s even the ones that don’t do the level of manipulation and abuse I was subjected to — there’s still an element of pressure to buy into what they want of you and act the part at all costs. Even if I had held out a lot longer and never “admitted” that I heard voices, or that I was schizophrenic, or whatever, they’d have just labeled me as “lacking insight into my condition”.

    I saw this happen to a lot of people, and now talking to a lot of psychiatric survivors I hear it a lot. It’s a common aspect of even many psychiatrists who aren’t overtly abusive.

    And then everything gets interpreted in that framework, too.

    I know two different people who were told that their accurate statements about their fathers jobs were delusions. One person was told that her belief that she was a writer was a delusion of grandeur. Etc.

    So there gets to be this atmosphere where you’re pressured to act like a mental patient of whichever category you fit into. One parent even called one of the places I was at (she knew other kids who had been sent there), “A place where they manufacture little mental patients.”

    So that manufacturing, even when abuse is not involved, is incredibly common, and then the person subjected to it is left to deal with the fallout (including apparently the fallout years later).

    I once had a staff person who worked in the psych system as well but actually refused to read people’s psych records, because she said so much of it was BS assumptions about people and/or things they’d been trained into doing.

  6. Tony Attwood’s The Complete Guide to Asperger’s Syndrome has an index entry on “fantasy worlds” with a subheading of “danger of psychosis”.

    Here are some of the quotes.

    Page 167:

    Another emotional repair strategy that could become inappropriate is the retreat into a fantasy world. The use of fantasy literature and games as a means of escape can be a typical tool for ordinary adolescents but is of concern when this becomes the dominant or exclusive coping mechanism. The border between fantasy and reality may become unclear, leading to concern regarding the development of schizophrenia.

    Page 181:

    During adolescence, some girls (and sometimes boys) with Asperger’s syndrome can develop a special interest in fantasy worlds. The interest can be in science fiction and fantasy but also fairies, witches, and mythical monsters. An intense interest in the supernatural could be confused with some of the characteristics associated with schizophrenia, and the clinician needs to be aware of the qualitative and functional differences between a special interest in the supernatural and the early signs of schizophrenia.

    page 191:

    The special interest can also be associated with a delusional disorder (Kurita 1999). This can occur if the interest is fantasy literature and super-heroes, and the person acts as his or her heo in an attempt to be successful and respected in social situations with peers. This characteristic, or adaptation to having Asperger’s syndrome, can be of clinical significance when the person cannot separate from the alternative persona and may consider him- or herself to have special or magical powers and omnipotence.

    p. 341:

    One of the compensatory mechanisms for a person with Asperger’s syndrome, who may achieve limited social success and understanding, is to create a fantasy life that can include imaginary friends and imaginary worlds in which he or she is understood and socially successful. The contrast between the real and imaginary world can become quite acute during adolescence, and under extreme stress the adolescent with Asperger’s syndrome may create a fantasy world that becomes not simply a mental sanctuary and source of enjoyment, but a cause of concern to others, that the distinction between the fantasy world and reality is becoming blurred. A tendency to escape into imagination as a compensatory mechanism can then become interpreted as a delusional state of mind (LaSalle 2003).

    I disagree with Attwood on some of his formulations here, but basically, this has been observed over and over again in autistic people. I don’t even think it’s unique to autistic people, I’ve heard of a lot of kids who grew up really isolated, and/or disabled (physically or otherwise), who did the same sort of thing. Many gave up their elaborate fantasies/daydreaming/etc as they got older, some never did.

    In fact, my initial diagnosis reflected that — I was given an additional diagnosis of a “dissociative disorder not otherwise specified” which was their catch-all for what they called… what was it… something like dissociating into complex intra-psychic experiences as a way of dealing with stress. They wanted to rule out “atypical psychosis” as well, because they weren’t sure how much I believed this stuff, but that was only ruled out years later when I was able to tell them. At the time, nobody had any way of knowing how much of my fantasy world I believed and how much I just wanted to believe.

    But the initial diagnosis also included the fact that I was autistic and was thought to have a complex neurodevelopmental disability of some kind.

    In fact, the ironic thing in a way is, I really wished for awhile that I could be as out of touch with reality as some of those shrinks thought I was. Because reality at that point in time was highly unpleasant. I think nothing proves my rock-solid hold on reality more than the fact that I couldn’t get away from it even under severe stress and while trying to find some other reality to hop into.

  7. It hasn’t been that long since autism and childhood schizophrenia were considered synonymous, even though Kanner and others were working on separating autism out from the rather meaningless umbrella of schz for quite a while. If somebody is surprised that an adult autistic person was diagnosed as schizophrenic, somebody hasn’t done his homework.

  8. Yeah. It wasn’t separate in the DSM until the year I was born. And, good grief, yeah, it just shows ignorance to not know the long historic link (that still persists in some places) between these two labels. (One reason I won’t wholly divorce myself from the schizophrenia label is that link — we’re only outside of it for political reasons, not because being inside of it has any particular meaning.)

  9. Joseph: “But for John to be aware of that he’d have to, you know, be familiar with some science in the autism field.”

    Not likely to happen.

  10. And what was written of me prior to the schizophrenia diagnosis was this (this is one of the “I don’t label ANYBODY” guys, but autism was among the things meant by this and enumerated by my other shrink more explicitly):

    My current assessment of this case continues to be that there are organic and psychiatric factors interacting in a complex way. While Ms. Baggs currently meets the diagnostic criteria for many disorders, I feel it is more important to understand and effectively treat her than to decide upon DSM-IV labels.

    It may be that Ms. Baggs has had a neurologic disorder from childhood that has made her experience of herself and the world so unusual that she has never had the chance to develop a cohesive personality structure. The hormonal changes, continued myelinization of the frontal lobes (which broadens an individuals capacity for abstraction), and the psychosocial pressures to affiliate with peers associated with puberty, the physical abuse and possible trauma to the head suffered in her recent relationship at college, and the recent substance abuse may have come together in a way that accelerated the progression of her neurologic disorder, and overloaded her already underdeveloped coping skills resulting in the severely decompensated presentation we are seeing now.

    […]In any event, the complexity of this case is extremely rare and will not be resolved quickly or easily. Ms. Baggs is currently unable to care for herself, or continue her education in a normal environment. It is likely that arrangements will have to be made to provide long term care, intensive treatment, and a specialized educational program in a residential setting that includes neurologic, neuropsychiatric, and neuropsychologic components. Follow-up MRI studies will also be necessary to monitor for any developing brain pathology.

    That’s from a guy who preferred description to labeling, but basically described the fact that I was already autistic and had a major crash-and-burn period in early adolescence, and they weren’t sure what it was at that point so they speculated about a number of causes. But they were all (even the people who diagnosed me as having had been “psychotic since very early childhood”) convinced I had a lifelong condition of some kind, not something that had just started then. And they were all convinced something had happened in early adolescence to change things, but they didn’t at that point know what.

    At that point there was not nearly the amount of literature there is now about the different ways that puberty affects autistic people, so they had no way of knowing that I fit squarely into many of the descriptions of skill-loss during puberty. They also had none of this new Tony Attwood stuff about fantasy worlds, and made do with the labels they did know for that.

    Unfortunately, too, the “residential setting” that ended up getting picked was the one that diagnosed schizophrenia/etc and did all those bad things.

    “School” there, for me, by the way, consisted of being propped up in a chair and having a tape of The Diary of Anne Frank blasted in my ears to keep me from falling asleep. Because otherwise I’d flop over and drool, and the other kids would complain. I was on so much medication that it was something like… 600 was a normal dose, 900 was toxic, and my number was more like 1800. I had seizures and all kinds of crap on that stuff.

    The shrink would also take me in public and try to modify my behavior. Like he took me to a tropical fish store, and I ran around looking at the fish, flapping and squealing, and he would try to get me not to do things like that, and would describe this as inappropriate happiness or something. I had a very unusual walk (still do, but even more so at the time due to the meds I was on) and got walked back and forth between the barn and the house until I got my legs moving a different way, at which point I was allowed indoors to eat. I often tried to get away from people, but they called this “psychotic withdrawal” and made me stay in overloading situations even if it got to the point of meltdowns. (This along with a later systematic behavior program made me have to relearn my old instincts on how to handle overload.) He hit me over and over harder and harder until I looked him in the eye.

    They never bothered monitoring my blood levels to find out that I was toxic. They dismissed the seizures and other severe side-effects as psychiatric, even when I was falling to the floor every few seconds and started refusing to walk. I really can’t see trusting even a rudimentary medical opinion from these people, let alone anything complex.

    I should also note that it’s interesting that I was unable to tell my parents pretty much any of what was going on. That’s because all the training I got in “communication” was actually in “vocal repetition of a party line about my mind” (which left my actual communication skills even more atrophied than they’d been before). My parents were horrified when they found out, although at the time they also had their own troubles because the “family therapist” at this place was accusing my mother of causing me to become autistic (they said “schizophrenic”, but I mean what they were actually referring to).

  11. Excellent point. It pisses me off no end that the incompetent doctors I have had still impact my healthcare, years later, despite the fact that they were just plain wrong, and my opinion doesn’t count.

    –IP

  12. Amanda, obviously you have seen the blog entry I referred to on your You Tube account and I repeat my recommendation to you to sue the moron.

    He has noticed this entry, but he has (not surprisingly) refused to play “blog tag” with you. In other words, he’s afraid to go onto someone else’s blog because he knows deep down his rubbish is going to get deleted and ignored!

    Just on this while I’m here – I’m not sure if you’ve touched on this or not, but it was common practice for a lot of quacks to mis-diagnose Autism as schizophrenia. This dates back to the days before Kanner first seperated the two in the 1940’s. According to Wikipedia – who I regard as pretty reliable because of their strict verification rules – the condition known in those days as a form of dementia was first diagnosed in 1893. I think this is very strong evidence towards the existence of full blown Autism – as distinct from HFA, Aspergers Syndrome etc etc – in the 19th century. This blows all the theories of the curebies right out of the water. Eugene Bleuler was the first to call the condition schizophrenia, and either at the same time (1908) or four years later he used the word “Autism” as a part of the paper on the condition.

    So in a nutshell, Amanda, your diagnosis of schizophrenia came from a quack who was still living in the early 20th century. It’s a pity idiots like that still exist in the world of psychiatrists and psychologists. But you’ve got past them and obtained your correct diagnosis – and for that I say “Fantastic”.

  13. “Inappropriate happiness” has got to be about the most inappropriate oxymoron I’ve ever heard of. Even if that wasn’t the actual, original phrasing that doctor used, ANY phrase that could get “translated” into a term like “inappropriate happiness” is just … sick. Since when is happiness “inappropriate”?

    I do agree the entire system needs some sort of overhaul. As Amanda keeps pointing out over and over, in powerful ways, sometimes “good intentions” are not enough if the entire system is structured so that patients/clients/consumers are inherently disempowered (even if supposedly for their own good). And it also doesn’t help that some training programs for people entering the so-called “helping professions” may not always have enough of the right training, and may sometimes get some of the wrong training.

    As I’ve mentioned elsewhere I think, I have a degree in social work even though I don’t use it now, at least not directly. Some of my classmates (and predecessors and successors in the program) have gone into mental health fields, some in school social work (there’s a sub-speciality for that at Gallaudet), some work at social service agencies, and a very wide range of settings. Not all of them work directly with clients/consumers, but many, probably most do. And the more I read through this blog site, and all the wonderful places that are linked from here, the more I start to think, “Did we get enough training FROM CONSUMERS on how the CONSUMERS want us to work with them?” Sure, we did plenty of reading and discussion on how “empowerment” and “self-deterimination” and the “strengths perspective” work out in the field. We did even talk some about how the relationship between a social worker and his/her clients is already inherently imbalanced in power and that we should be conscious of the fact that many consumers may instinctively feel they need to do certain things either to please us or to fit in with the system rules.

    And I think for at least some of us with at least some clients in our internships (and ditto for those who went on to work with clients after graduation), to at least some extent, there was some real empowerment. Some clients come into the “system” already in possession of a certain amount of power in the form of tools, knowledge, resources, a strong personality that won’t take no guff from nobody, etc. They just need a few more tools and resources and services–which THEY identify–then they go on their own. And we were trained that it’s the CLIENT’S place to identify the goals and never ours to say, “Oh, you shouldn’t be working on goal X, you really need to add goal Y to your list.” Our place was to help the client identify the range of options available to them, the resources and strengths they already had at their command, and the resources and tools they needed to get and where/how to get them.

    But in looking back … one of the things I wonder is, “But did we go far enough in discussing what the power imbalances REALLY mean, ESPECIALLY for clients who may be coming to us after they’ve already been conditioned by years of negative experiences with “the system” to engage in … ” well, to use Ballastexistenz’ term, “Echostaffia” or “Cute Client Mode.”

    We did talk somewhat about clients who were especially vulnerable to being disempowered, but I think not so much the long-term effects that is described so well in the “non-person” video elsewhere in this blog site, or in “Dead Hamster Laugh” (I did get to read that today) or the “echostaffia” post. And not quite enough in what this means from our side of things, as the people who may be triggering “echostaffia” in our clients even if we don’t think we are, even if we are consciously working to avoid precisely that. (I keep saying “our” … I guess because whenever I think about my social work training days I flip back to the mental state I was in then, that someday maybe it would be me working with clients unless I could find a way to use my training to make larger, systematic changes instead).

    And I also think we didn’t get enough training directly from consumers THEMSELVES. I don’t remember off-hand any guest lecturers from people who have in some way used the services of social workers in any setting, or reading anything written or produced by them. (Maybe a few–but if so, obviously nothing memorable, and nothing nearly as powerful as, say, the non-person video, or “Getting Out the Truth.” Or I’d remember.) I think we needed content and curriculum materials made BY consumers of “the system” tell us straight up what it looks like from their side of things. There were allusions in some of the text books but nothing that put us directly into the shoes of the consumer in the way that so much of the written and photographic and videographic work at this blog site does.

    I know that simply doing better training isn’t enough. It’s the system that needs to change. (One of the many things that influenced my thinking on this was the link to the Stanford Univerrsity study from the interview between Amanda Baggs and Lisa on institutions.) But I think training does need to be one part of it. And I guess it’s easier for me to focus on the training side because I feel like I’m in a position to have a small voice, as a former graduate, in the training of future social workers from one small university program, whereas I wouldn’t know where to start with the whole system.

    I still have some contacts in the social work department at Gallaudet (via email) … I just have to think how to frame my thoughts (because they’re still in turmoil right now). And I also want to do my background homework first by trying to pull together a suggested bibliography of material that could maybe fit into their curriculum. Including, of course, some of Amanda’s own materials. And I need to decide exactly to whom I want to send my email.

    I don’t know how quickly I’ll do this (I work full time and am taking a class on the side … I’ve already spent WAY more time on this site than I meant to!). But anyone reading this here can feel free to bug me at ashettle (at) patriot.net … I have attention deficit disorder, so occasional reminders can help me stay focused. And of course, anyone reading this can feel free to suggest materials, either on-line or in print, that you think that future social workers ought to see, especially if you think I might overlook them otherwise, or especially if you know of any written or produced by DEAF clients.

    I’ve put this on my electronic calendar with a due date to myself by Feb 18, (after my upcoming exam which I’m rather nervous about … especially since I haven’t been studying enough, but that’s my own fault!). (Amanda says she sometimes melts down if too pressured by deadlines — as an ADDer, I’m kind of the opposite: if I don’t have deadlines I don’t get things done.)

  14. Also, another thing about that time period was…

    …I used to wake up screaming every night. And that was because in part of the discrepancy between how I was made to act, and who I was. I was terrified that I was the worst person in existence, because of all this that was going on, but I did not know how to stop it. There was an immense tension between who I was and who I was trained to act like, and it took a constant toll on me.

    That doesn’t exist anymore. I sleep as soundly as a person with fairly random circadian rhythms can sleep, and I can’t remember the last time I woke up screaming. I don’t regard myself as evil. There is no constant tension, and no constant gnawing sensation inside me that I’m doing something awful. This is because I live my life as myself. This is also why it’s laughable that I’d even want to pretend to be something I’m not: I spent enough time forced to do that that returning to it sounds like one of my worst nightmares.

  15. I was terrified that I was the worst person in existence, because of all this that was going on, but I did not know how to stop it. There was an immense tension between who I was and who I was trained to act like, and it took a constant toll on me.

    This is sort of how I’ve been feeling lately, though it’s not nearly as bad as it used to be…I’ve gotten rid of a lot of trained responses and am happier and more relaxed overall, but I always wondered what that waking up in the middle of the night thing meant. I don’t generally scream but I do wake up and feel like there’s this huge gaping void there, and that there is absolutely no place for me in the universe. Rationally I know this isn’t true and I am still fundamentally exuberant, and I can usually talk myself down from those states, but it is frightening nonetheless. There’s just a lot of weird, old layers of guilt and a feeling that if I don’t do things in a certain way I am not good enough to be a person (or perhaps more accurately, that I’ll be put into the ranks of not-a-person because I’m not giving off the right signals).

    One of the scariest ideas I’ve ever come across is the one which suggests that it somehow doesn’t matter how a person’s internal environment is, so long as they “look happy” or “look functional”. There have been times when I’ve pushed myself to the point of crashing horribly simply because I’ve been scared into thinking that if I don’t keep pushing, people will start telling me I’m not happy or functional enough, at which point they will make it more difficult for me to ever actually be happy.

  16. Amanda, did you encounter any resistence from the MD types when you were gathering your records? It seems you’ve dealt with several different docs. Did any of them resist sending you the info? Did you have help from your parents to remember their names/locations? Curious, as I’d like to have all my medical info in one place as well, for my own information. Sadly, some interesting things (interesting to me) are probably lost in time if not space.

  17. Autism was not diagnostically distinct from schizophrenia in the DSM until 1980. I have seen books from into the 1980s and 1990s that still stuck the two together a lot.

    I know, Amanda. That was actually my point. The quacks didn’t have the sense to notice the difference between Autism and Schizophrenia, which became obvious when proper diagnostics were applied. Kanner saw it. Bleuler didn’t, but then psychiatric medicine was more primitive in his day when the church had a lot more influence than they do now (unless you live in certain parts of the US – but I won’t start on that). It just took a long time for the DSM to be developed so the quacks could do their job properly instead of copping out to the Bleuler translation and all but ignoring Kanner (and Hans Aspergers while they were about it). I don’t know which version of the DSM made the seperation – I know it wasn’t DSM-IV because that had to be later as it incorporated the other ASD’s including Aspergers Syndrome.

    Hope that makes what I said earlier a little clearer! :)

  18. Well… I think Bleuler conflated a zillion different things together (including some forms of autism — not in his term “autism” but just autistic people he counted, I noticed some of Kraepelin’s case studies of dementia praecox sounded more autistic than not too) and called them “schizophrenia” based on a harebrained idea of what made them all similar.

    Some of those things (including autism) were later separated out from the word “schizophrenia,” others weren’t. The ones that weren’t, all remain under the same mostly-meaningless category. The ones that were separated out, were separated out for more political reasons than anything — there is no reason that the idea of schizophrenia could not be separated out into a zillion different things and the category rendered empty.

    So I don’t really see it as “autism is different from schizophrenia,” as much as “schizophrenia is an outmoded and inaccurate term that’s unfortunately still in use, and autism managed to get out of it for various mostly-political reasons”.

    I mean, look at the diagnostic criteria for schizophrenia. You would be hard-pressed to find an autistic person who didn’t fit it in terms of superficial behavior, if it weren’t for the one criterion that says “…and the person is not autistic,” basically. It interests me that “childhood schizophrenia” is still allowed if the person has the kind of “schizophrenia” that involves hallucinations or delusions, but if the person only has “negative symptoms” (which is considered a “real” form of “schizophrenia” if it happens in adults) it’s autism and decidedly “not schizophrenia”.

    All the people who said I’d been “psychotic since early childhood” were doing, was going on an older definition of “psychotic” that encompassed social withdrawal, repetitive behavior, loss of speech, echolalia, so-called “sensory issues”, etc, in children, not just in adults. Then I became “schizophrenic” when I started telling myself fairy stories to try to keep myself sane (and thereby crossed into the realm of “delusional” in their eyes), and possibly also as a result of temporal lobe seizures (which resulted in fleeting visual hallucinations and strange buzzing noises, but which, yeah, were fleeting and immediately followed by vomiting or sleep). I think shutdown was considered hallucinatory too even though it wasn’t.

  19. Dear lord, Amanda… Here I am doing the whole psychiatrogenic (how’s that for a word) pts[d] bit, still or again, and my stars, what they did to you.

    I *did believe I wasn’t human. (At least one of me still does.) But mercifully, I’d learned enough censorship by then not to say it to shrinks. Actually, I never got the “We are entitled to know your most private self” bit; I never worked out the premisses of psychiatry – not the official ones, anyway.

    Andrea: you might want to think about that word ‘consumer’. In my view, it obscures the power differential.

  20. In my case, I’m questioning whether my spectrum diagnosis(and two other childhood ones) was accurate. There are days I think it might be and days I question it altogether. Looking around autism/Aspie blogs has added to my ambivalence. Sole affected out of a very large extended family, family history of mental illness of a non-spectrum kind, mother pressuring for a diagnosis.

    I have a different question, though. Doing this poking around, something’s been bothering me at the back of my mind and your list of “labeled psychotic” people finally pinned it down.

    If autistic people are mostly male, where are the males online? I was thrilled when I found Jim Sinclair, before realizing my preconceptions there were very wrong. Including you, that’s 6 females on that list to 2 males. Anecdotally, that’s the sort of ratio I’ve been seeing on the blogs I’ve been looking through so far, and since I’ve always been told it’s 4 to 1 the other way, I’m wondering uneasily where the ‘missing people’ are. I was always told as a kid females have ‘better outcomes’. Do you find that true?

    It’s possible I’m just not looking in the right places. Would you recommend a good male perspective on autism?

  21. There are a number of possible reasons for more females online (it’s probably more than one, and we discussed this at a recent ALF meeting where there were something like 8 women and 2 guys):

    1. We might run around writing to each other more than males in general due to either gender socialization or something innate.

    2. We might be overrepresented both among people who “pass well” and among people who “don’t do as well” (I had always read the latter until recently). If autism has to do with something on an X chromosome, we might have another normal X chromosome balancing things out, and it might take more going on with us in general to make us show up as autistic in any conventional way (which in turn contributes to the impression I always read that “girls with autism have more severe neurological issues”).

    3. Autism might look different in women. The criteria are normed on guys. The real ratio might be different.

    4. Autistic women might be more likely to do things that get us other diagnoses, like the aforementioned fantasy worlds.

    etc.

    But at any rate autistic women are overrepresented online.

    I’ll get back to you with a list of webpages by autistic men. In the meantime, have a look at my list of books by autistic authors. When I first made the list, there were slightly more male than female authors (and one intersexed author). Not sure quite what the ratio is now.

    Also, you’ll find more autistic guys in the offline support groups, especially since autistic women can often be intimidated by the amount of sexual frustration/desire/etc apparent in the guys towards them (at least the straight ones), and often stop going because of that.

  22. I read that for those females who “pass well” they are more likely to be withdrawn and reserved and thus not exhibit any outward signs at first of any differences. Whether this is true or not, I don’t know. I know it applies to myself and I also know that I don’t “pass”, I “mask” and I can’t “pass” for too long without getting very stressed and upset. I certainly don’t “pass” in front of my husband and as such I’m very comfortable around him.
    I don’t go to support groups in the real world as I simply find it very difficult to mix with other people. I have had people saying “oh you’re fine” because I’ve taken the lads to toddler group without noticing that I’m sat on my own not talking to anyone. That’s not to say I never talk to anyone, but nine times out of ten they have to approach me and I can’t make eye contact when I’m talking to them.

  23. “Inappropriate happiness,” sheesh, that’s what I had as well apparently. Schizophrenia is a messed up diagnosis anyway, at this point in time it’s more of a catch all term for various very different psychiatric conditions. It’s kind of like saying Immune System Illness and treating people with Lupus the same as people with HIV. The real problem with psych misdiagnosis’, as you noted, is that years later when it’s been proven wrong, it is still hard to shake off. I don’t think I’ll ever shake off my bipolar disorder label even if they find specific clear physical reasons for my moods being all up and down. And the treatment for psych disorders does seem intended to create a cycle of illness. In third world countries people recover from psychotic breaks far more easily than here in North America, because over there they don’t have meds and wards and shrinks.

    So frustrating. And also disturbing is that people still think it’s okay to discount someone by talking about them possibly having a psychiatric disability.

  24. “Inappropriate happiness,” sheesh, that’s what I had as well apparently. Schizophrenia is a messed up diagnosis anyway, at this point in time it’s more of a catch all term for various very different psychiatric conditions. It’s kind of like saying Immune System Illness and treating people with Lupus the same as people with HIV. The real problem with psych misdiagnosis’, as you noted, is that years later when it’s been proven wrong, it is still hard to shake off. I don’t think I’ll ever shake off my bipolar disorder label even if they find specific clear physical reasons for my moods being all up and down. And the treatment for psych disorders does seem intended to create a cycle of illness. In third world countries people recover from psychotic breaks far more easily than here in North America, because over there they don’t have meds and wards and shrinks.

    That’s one reason my initial shrinks gave me labels with “-NOS” tacked on the end of them. Those don’t stick as hard. (Obviously. Because now people are claiming that schizophrenia, which came later, trumps PDD-NOS/psychotic disorder NOS/dissociative disorder NOS/CNS disorder NOS automatically, despite the fact that as psych labels go the earlier ones were more accurate, if still slightly off.)

    And also disturbing is that people still think it’s okay to discount someone by talking about them possibly having a psychiatric disability.

    Yeah, that’s the other thing that irritates me. Even if I hallucinated on a regular basis, would that make me wrong about the effects of the psych system? Hallucinating doesn’t mean everything you perceive is a hallucination, and forming false beliefs about the world (which everyone does to one degree or another anyway) doesn’t mean every belief you have about the world is false.

    I heard on a video somewhere that the idea of people with psych labels as pathological liars and non-credible came about when people were starting to write inmate accounts of psych wards in large quantities. The superintendents started writing to each other about how these accounts could not be trusted (particularly not when the superintendents themselves were described in an unflattering light), and so it eventually became “common knowledge”, since the superintendents were the ones with all the power in that system.

  25. Just picking up your post further up, Amanda (I won’t quote it because it would take too long) – the 20th.

    I agree pretty much with what you’ve said. The issue lies in the fact that (as you say) on face value Autism and Schizophrenia look the same. When you get into the specific diagnostics of today – such as the DSM-IV – that’s when the differences come up. That’s all I was saying. And then there’s the public perception of schizophrenia – which is far more negative than Autism. Autism has a “Gee I’m so sorry” tag, whereas Schizophrenia creates a level of fear akin to a criminal.

    My understanding of the early days is that it was Bleuler who first used the word “Schizophrenia” because he felt that the usage of the word Dementia in the work Kraepelin had done was inappropriate. I tend to agree because of the connotations the word dementia brought with it at the time – that is it had been accepted that dementia was a part of old age and to see it in younger generations created a sense of early death (which was unfortunately more common in those days – and I mean in general). You’re right that Bleuler used a lot of other words, including Autism, in his studies – and a lot of them weren’t seperated. Kanner did it with Autism, but even then (as you know through experience) the mis-diagnosing still went on because of the lack of proper diagnostics.

    I’m not saying this to disprove what you said about Autism and Schizophrenia. It’s probable that now Schizophrenia isn’t being properly diagnosed because of not just Autism but also the other ASD’s. The voices issue is one key difference – as distinct from talking to yourself (which at one time in the dark ages was seen as the same thing). Feeling like you’re going mad from the inside. You can’t say that about any ASD because the madness (if there is any) is external – from idiots who don’t understand and bring on sensory overload by their actions, and attracting a variety of tantrum for the overload. That’s how I tell the difference between the two.

    Just as an aside – I did notice you did go over to that other blog. Probably not a good idea because that fool doesn’t listen. He’s in a world of his own and frankly I think he may be manic depressive, and he is really behaving like some sort of meglomaniac over his views of mercury poisoning. And like all people like that, he is consumed with his own vanity. You can’t talk to people like that without being abused or vilified – so it’s a waste of time and effort. That’s why I recommended the legal path.

  26. Thanks to Baba Yaga and Amanda for asking me to reconsider the word “consumer.”

    This is the word we commonly used (though sometimes used the word “client”) in my social work training program. And, yes, as I look back, the SUBTEXT was to obscure the power-differential, though that isn’t how it was explained. The way it was put, and the way most of us thought of it as, was being more “respectful” to the people who obtain services. Some people (social workers, at least) think the word “client” sounds too pathological. But it occurs to me that I’m not sure to what extent, if any, clients themselves had any input on what language THEY were most comfortable with. (If “clients” isn’t it either, let me know. I’ll use it for the moment because I’m not sure what else to use.)

    But if two people who actually USE, not just provide, these types of services say they dislike the word “consumer” then I’ll avoid it, at least until and unless I were to get a good reason to return to it. (If I slip and use it, remind me.) And when I get to writing that email to my old social work department contact(s), I’ll mention it.

    Any alternate suggestions as far as vocabulary goes?

    And, any other points I should raise with my old social work training program?

    My BROADER point to them is going to be, “We need to find a way for social work students to learn directly from clients”. One thought that occurs to me is that there should be some kind of process for current/former deaf or hard of hearing clients of various social service and other agencies across the country to actually review the curriculum and reading materials for the Gallaudet social work program and make recommendations. (I specify deaf here because most people who get social work degrees at Gallaudet go on to work predominantly, or at least part of the time, with deaf and hard of hearing clients.) And we need more first-person accounts and political tracts written/produced by clients as required reading in the curriculum–including the really hard-hitting materials from clients who say the system has miserably failed at everything it purports to do. And we need current/former clients as guest lecturers. (And, with the appropriate degrees, even as assistant or adjunct professors.)

    In the long-run, what’s really needed is to put more clients in a position of power at organizations like CASW and NASW. (CASW — I forget what all the letters stand for, but it accredits training programs for social workers so it has a GREAT deal of say in exactly how social workers in the United States are trained. The NASW is the National Association of Social Workers; I think its URL is http://www.naswdc.org) And at the international level, there’s the International Association of Social Workers (I think that’s the right name).

    But as one tiny beginning, I’ll see what input I can have at my own former training program.

  27. But go ahead and refer to me as crazy, if it makes you feel better. I do align myself with the mad movement as much as with the autistic one, and I’ve had many experiences in common with those described as the various psychiatric elaborations on the word “crazy” (as well as still carrying psychiatric labels beyond autism to this day). It just doesn’t mean I’m not autistic, any more than my finger wasn’t sprained just because people once thought I broke it.

    In a couple of places I’ve been to (and posted to, and moderated) where people discuss things considered to be “disorders” in terms of them actually being natural human variations that don’t necessarily entail a long period of therapy or drugs or whatever, there’s a kind of… lack of mutual understanding between groups. I mean, a lot of people hold a very inconsistent position, in the sense that they believe their particular so-called disorder is the way they are meant to be, or the way they function best, and doesn’t need to be cured, and they’re generally right, but then they’ll decide, seemingly arbitrarily, that psychiatry is right about everything else that gets called a disorder, just not this one thing, and that everyone else who experiences things that are labeled disorders needs to do what their doctor says, take their pills, etc, etc. Some of them have heard of the mad movement, but frequently express a belief that it “goes too far” and repeat the old line that “they believe no one should ever get any help.” Only their thing should be accepted, not others’.

    It’s one of the reasons we’ve been dropping a lot of our connections with certain groups in the past few months, because if we “outed” ourselves as a group who, in the past, have had experiences of the kind that doctors have or could have considered “psychotic” or whatever, we figure that a certain number of people would decide that permanently destroyed our credibility on all levels.

    For instance, if you say that you were mistakenly diagnosed with schizophrenia because you were plural and heard the others conversing with each other, people will be very sympathetic in some communities and pat you and say things like “it’s just so horrible how ignorant doctors are” and “oh you poor thing, that happened to me too.” But, if you say that you were diagnosed with schizophrenia because you happened to have some of the classic “symptoms” of it (however vague they may be), even if you are plural, there will be an organized effort in some places to boot you out and send you into a “mental health help” community, “where you belong and where you can get real help,” or to at least encourage you to “listen to your doctor and take all your meds.”

    So, ok, for instance, a few months back, this girl came onto a group we’re on… I mean, she didn’t go into a lot of detail, but she said that sometimes she heard voices that told her things that upset her, that she was worthless, that they hated her, etc. She also said her doctor had diagnosed her with a psychosis and put her on neuroleptics, but was wondering if she should take them, because she had a friend who could make the voices stop by calming her down, and also wondered if the voices might actually be other selves who were trying to communicate. (As for the latter, I couldn’t have told her whether or not it was so; that really is something that other people can’t judge for you.)

    However, this girl basically got the equivalent of a ton of police cars with screaming sirens surrounding her and handcuffs slapped on her, and people treated hearing voices as if it were equivalent to a heart attack in terms of being a medical emergency. She was lectured about the immediate, grave danger she was in and how her very severe illness was beyond anything the group could help with, and how she must not try to think for herself right now, but just take her pills and obey her doctor. She was told that since she was psychotic and not multiple, the voices didn’t have any inherent meaning, even if they appeared to be giving very coherent and consistent messages.

    The extreme irony is that we’ve seen people in other groups (online communities, etc), responded to in the exact same way, sometimes in the exact same words, for saying things like “there’s another person in my body sometimes.” The whole LEAVE THIS GROUP NOW, YOU ARE IN GRAVE DANGER AND SEVERELY ILL, GET TO A DOCTOR NOW THIS SECOND business. And even though the group where this thing happened was for discussions of things like several selves to a body, nobody seemed to realize the irony of doing to her what had been done to many of them.

    This is even something we’ve seen some psychiatric survivors do, to justify abusive things that the system did to other people– “Oh, but that person was psychotic,” as if that made *everything* suddenly understandable. Yet because they, of course, weren’t psychotic, what was done to them wasn’t okay. And some of the But At Least I’m Not Psychotic people seem to regard it as being somehow vastly more horrible than anything else considered an “illness,” which isn’t borne out by my individual experiences where I would have been considered to have a “break with reality,” nor those of a lot of other people I’ve talked to. I don’t know why people are so terrified of it. Is it because they see hallucinations or false beliefs as making one unable to perceive reality in any sense, and they see that as the most terrifying thing imaginable? Like you said, everyone has false beliefs, and there are tons of socially sanctioned and encouraged ones.

    (And, please nobody start in on “you have clearly never experienced the pain of having a disordered family member” stuff. I don’t want to get into it here, but suffice to say that’s a completely wrong assumption.)

    As for the bit about fantasy… we’re going to e-mail you a reply, because any in-depth response would get into some personal stuff for us.

  28. Amanda: is it ill-mannered to use your blog to answer other people? I’m in too minds, & just hope it isn’t.

    Fenric: I find it a bit weird that in response to Amanda’s being discounted on the grouds of having once been diagnosed schizophrenic, you should adduce a belief that the discounter is manic-depressive, as a way of/ in the process of discounting his ability/ willingness to hear other views.

    Andrea: thanks! Unfortunately, the ‘naming of parts’ thing is a bit of a hornets’ nest. Different people will telll you different things, and to a certain extent you’ll have to be led by that, ‘though if in doubt, I think ‘client’ is probably a reasonable compromise. Generally, the less politicised people are, the more emollient/euphemistic the terms they go for – they’ll want to be called things like mental health sufferer (gnk? how do you suffer from mental health?); consumer [US] or service user [UK]; person with a disability; abuse survivor (or even ‘thriver’!).

    On the other hand, the more politicised (or more respectful of language), the blunter one tends to be: choosing words like mad – disabled – victim. None of the accepted words for client/consumer/service user/patient is wholly truthful, istm: generically, ‘patient’ comes closest to recognising the existence of hierarchy & power differentials, but for that very reason quite a few people, who’d rather see themselves as agents in their own lives even if it’s only (or barely) a half-truth, dislike it); whereas ‘consumer’ simply colludes with a lie.

    I have a friend who says ‘people I work with’, but that clunks, and ‘withness’ isn’t necessarily any too easy to achieve.

  29. Amanda, all I can say is, your words are a goldmine. I come away from every post I read of yours with so much to think about, often enraged and disturbed, but at the same time inspired and energized, and the same is true as to so many of your commenters. I mean, this idea that the word “consumer” erases the power differentials between the disabled and medical professionals: YES. Not only that, but between individual citizens and the gigantic conglomerates most people have no choice but to buy what they need from! For just one of many interesting threads you’ve given me to pursue!

    As to what happened to you, Amanda, that guy who used “trans induction,” who was an abuser par excellence, the way your mother was blamed for what turned out to be a bogus diagnosis, the way you said what doctors forced you to say, these are atrocities and I am so glad you and others are making your voices heard.

    I dunno. You all inspire me so much!

    Heart

  30. Fenrick65,

    You said:

    “…but then psychiatric medicine was more primitive in his day when the church had a lot more influence than they do now (unless you live in certain parts of the US – but I won’t start on that)…”

    What exactly are you trying to say here? It’s obvious that you have a negative attitude towards “the church”. That’s ok. It’s your opinion. Which “church” you are referring to isn’t clear. But, one could infer you are refering to Christian churches and more specifically from the “South”.

    Are you saying that Christian churches had some sort of direct influence and authority over what medicines, treatments, diagnosises could be made in the psychiatric community?

    If so, this is the first I have ever heard of it. I mean prior to the “Age of Enlightenment” you might have a point, but centuries after that?

    If this is your contention, then you might want to provide some sort of historical evidence to support that rant.

    Otherwise, it is irrelevant to the topic at hand.

    Everything else you have commented on seems reasonable to me.

  31. No it’s not irrelevant at all. Just let me explain.

    During the dark ages everything was influenced by religious leaders. As science developed from about the 16th century, the leaders felt threatened because they were the accepted leaders of the time. For example, the House of Lords in England was made up of religious leaders. They made decisions that mostly were based on religious belief. Now anything that the Bible couldn’t explain was usually hidden in monasteries, and later thrown into lunatic asylums. This was still happening in the early 20th century.

    Now I wasn’t saying the church was a direct influence on medicine. No. The influence was indirect – but just as potent. The lack of tolerance for those who were different. The church has been forced to improve that as science started to prove a lot of their beliefs wrong and society started to realise what the church really stood for. You see intolerance even today in the form of extremist religious groups, and some political parties.

    Now where this is relevant is that this influence is what held back the progress of discovery of what Autism is, seperating it from first dementia and then schizophrenia. That’s what I meant by “primitive medicine”. That’s also why it took until 1943 for Leo Kanner to get his work done. I’m sure even Eugene Bleuler met resistance from the attitude that came from the church. In his own way, Bleuler would have been seen by the church as another Charles Darwin – trying to make scientific sense of “God’s work” or rather “God’s mistakes” (hence the habit of hiding these people away). Had it not been for this, Autism would have been discovered a lot sooner than 1943.

    I hope I have explained the situation so that you understand, Clay.

  32. Fenric65,

    You said:

    “Now I wasn’t saying the church was a direct influence on medicine. No. The influence was indirect – but just as potent. The lack of tolerance for those who were different.”

    Be careful. It sounds like you are attributing lack of tolerance to those who are different to the Church only. Intolerance is a sin that any human being can engage in. Scientist are certainly not immune to it. It sounds to me like quite a few were horribly intolerant to Amanda according to her recollections regarding her treatment in the various institutions she was in.

    Are there church members who practice intolerance to those who are different? Certainly. As you mentioned: “You see intolerance even today in the form of extremist religious groups, and some political parties”.

    But framing it so that it all comes from the Church, (everyone in it, or even a majority) is ludicrous.

    You said:

    “I’m sure even Eugene Bleuler met resistance from the attitude that came from the church.”

    Again, you are focusing blame in one place. Resistance has also, and primarily, come from within the medical community itself. Wasn’t Kanner’s conclusions overlooked until the ’60s?

    I don’t see the Church’s bogey man presence here. You may not trust or like the Church, but you ought to at least be fair-minded when it comes to how you characterize it and try to ascribe to it negative authority and responsiblity in areas that Church doesn’t necessarily intersect with.

  33. Clay, with all due respect – I’m afraid you’re wrong. The church did indeed practice intolerance in the old days. They didn’t see it as intolerance because they were the ones who made the laws in those days. As I said – the House of Lords was 100 percent religious people in the old days. Did you ever see the movie Elizabeth about the first Queen Elizabeth of England? True story. And after those were edged out, the people who replaced them were devotees to the church. It wasn’t until the general populus started seeing the benefits of science did the intolerance become visible enough for the decent people within the church to take notice. Chiefly because it was having a effect on who was voted in to office – whether it was prime minister of Britain or President of the USA.

    It’s the reason why constitutions like that of Australia made a deliberate attempt to seperate church and state – to stop that from happening.

    The current extremism (which you agreed exists) was exactly what the world was like back in the old days. One difference – there was nothing else around that anyone was allowed to see without being ostracised at best.

    All the resistance within the medical community that you speak of would have a religious slant on it. You might not like that or accept it – but it’s true. The basis of medical scepticism is creationism. It always has been. And creationism is a root part of any religion you care to name. As you say, it took a long time for some medical people to accept Kanner’s work over Bleuler’s. But we’ve come a long way since then. Why? Because a lot of the things that the church promoted as bad turned out to be not as bad as all that. Still not good – but not getting the sort of punishment it used to as the world freed itself from the inherent intolerance of complete religious belief. Religion is OK in doses for those who feel the need for it, but now they keep the intolerance in check. Or at least they try to in the face of the idiots of this world such as Falwell, Robertson and their kind.

    Bottom line – the church has had a lot more influence over the past decades and centuries than you think. You may try and push a number of issues over to other people – but it all boils back to the same problem. Religious belief. Which to me means the church. You may not agree, but history proves me to be correct. Not my own disbelief.

  34. Fenrick65,

    You are obviously fixated on “it’s all the Church’s fault” excuse. I can’t do much to change that. As much as you don’t like to admit it, the blame is all around. Check out Amanda’s other blog “Autism Demonized”. In it she has a post discussing the “changeling myth”. The myth is still alive and well and coming out of scientific pschologist’s depictions of autism, albeit in different words, but the meaning is still the same.

    While I don’t agree with some of what Falwell and Robertson say, I would hardly characterize them as “idiots”.

    For the record, I am well aware of the many abuses that the Church has progagated in its history. The Church, like any human organization, is fully capable of being infiltrated by evil leadership. While it doesn’t excuse it’s atrocities it bears mentioning.

    The blame for mistreatment of people with disabilities goes all the way around, in the Church, the scientific community (again, consider Amanda’s mistreatment by those “professionals in the institutions she was interred in), and lots of ordinary people.

    But, if you can’t see that and can’t get beyond the Church as the sole perpatrator, then I leave you to that delusion.

  35. The mistreatment by other parties only began in the late 19th century – at the earliest. The church started it before that. Way before that.

    It’s no delusion. You are severely underestimating the influence the church had over society up until the 19th century – and even beyond in places. If you choose not to believe that, then it’s not my problem.

    And I NEVER said the church was the sole perpetrator. I said it’s where the problem started.

  36. All the resistance within the medical community that you speak of would have a religious slant on it.

    I have to admit that from my position, I don’t see too much difference between the blind fanaticism of religious fanatics and the blind fanaticism of people insisting that psychology and/or science have proven certain facts beyond a shadow of a doubt, and treating people accordingly. It’s treated as a dogma which cannot be challenged. It’s not even a worship of science, because the things they’re promoting are not even well-done science, or even proper science at all, in many cases.

    In other words, they’re just ripping the black/white, right/wrong dichotomies out of religious fanaticism and grafting them onto other ideas.

    Personally, if I were to say what I don’t like about a lot of organized religion, it would be the authoritarian condescension of ‘leaders’ towards ‘followers,’ the black-and-white thinking and the people saying that certain things (and not things like, say, murder, which most people would agree is wrong whether or not they have any religious or spiritual beliefs) are wrong “because I say so.” However, I can’t claim that we didn’t encounter all these attitudes from people “trying to help” in a therapeutic sense.

    The basis of medical scepticism is creationism. It always has been.

    I’m not sure what precisely you mean by “medical scepticism,” but I’m inclined to be questioning of many medical conclusions and always get a second opinion because doctors have been wrong about us a lot of the time. I’m certainly not a creationist, and I don’t see how distrusting doctors because doctors have been wrong about you and people you cared about in the past has anything to do with creationism. To have blind faith (and I’ve seen a lot of people harmed because they or someone who had power over them put blind faith in medical authorities) in doctors isn’t necessarily better than blind faith in a religious leader.

    Religion is OK in doses for those who feel the need for it, but now they keep the intolerance in check.

    Who decides what “dose” of religion is enough for me? I’m curious, though. What if I don’t feel a need for it, but feel the influence of certain things in my life anyway– should I not be allowed to have it if I technically feel that I wouldn’t necessarily need it, but it’s there anyway? That doesn’t sound like a very ideal world to me, since I am rather tired of thought police and “for your own good” being inside our head in any form. We went through years of self-loathing and even self-injurious actions because we couldn’t “purge” ourselves of certain beliefs that others had deemed to be delusions. I am not particularly interested in any utopian philosophy which suggests that it would be better in either an abstract or a concrete sense for us to return to living that way. (To put it mildly.)

  37. I’m not sure what precisely you mean by “medical scepticism,” but I’m inclined to be questioning of many medical conclusions and always get a second opinion because doctors have been wrong about us a lot of the time.

    No, that’s not what I mean by “medical scepticism”. What I mean is people (and not doctors I should point out) who reject the medical explanation for a disorder or disease – preferring to believe that the problem was “created by God” and should either accepted (which is the 20th/21st century attitude) or hidden from view as a mistake (the pre 19th century attitude). The latter is the intolerance I was talking about. Hope that explains that one.

  38. Fenric65,

    I’m not disputing any inflence the Church has had in the 19th Century or any other for that matter. But, the notion that it is the Church and the Church alone who started all of the mistreatment of people with disabilities is dogmatic and flat out wrong.

    You seem to think that the only people capable of ugly behavior and attitudes on their own, without the influence of any one else, are those of the Church.

    Sorry, but that is poppycock.

    All people, religious, religious fanatics, agnostic, atheist, doctors, psychiatrists, scientists, dock workers are capable of a great many nast behaviors and attitudes. Hoisting the blame at the Church and the Church alone as bearing the fault of starting all of the prejudice against disabled people does nothing more than demonstrate that for some reason, unspecified, you have a chip on your shoulder when it comes to the Church, and seem bent on demonizing it.

  39. Clay, you have no idea. You completely underestimate the influence of the church back before the 19th century. It’s not poppycock – it’s the truth. If you don’t believe it, then frankly you need to look at history again and re-assess your view of it because it’s clearly and obviously tainted by rose coloured glasses.

    It’s what it was like then. Accept it. Because it’s fact. The whole House of Lords at the time of Elizabeth I was made up of church people. And that’s just one example!

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