Astrid’s Journal

Last November when my parents attended a meeting with my doctor, they said that once you enter the care world, and especially the psychiatric care world, you never get out. At the time, the doctor then in charge of my care, didn’t seem like he was of that opinion, and, in fact, was pretty much convinced that there was no reason why I should be in the psychiatric system apart from the fact that I’d made a suicidal threat two weeks before. Now, things are completely different. Why?

I think very few psychiatric wards, especially admission wards like mine, actually plan on keeping their patients long-term. This goes especially for acute patients like me. When you come in for crisis intervention, like I did, you’re supposed to stabilize and then leave. Stabilization is supposed to take a relativley short time. It is not as extreme as I thought it was, when I was frustrated cause, after seven weeks, I was still unstable, but people cannot take many months to stabilize.

I know quite a few patients who didn’t plan on moving into the psychiatric system long-term, but who ended up on more “chronic” wards because they stabilized so slowly that, apparently, they weren’t considered to be among the “acute” population anymore. This is all the more likely if structural stability requires a change in living arrangements. I am not sure why this is, but I assume that both the waiting lists and possibly not conforming to the new setting’s demands regarding mental stability, contribute to why several patients moved to longer-term wards while planning on moving to suppoted housing. In this sense, it’d help to have waiting lists for the longer-term wards themselves, as goes for the long-term living wards for adults here in Nijmegen, but, unfortunatley for some senior patients, not for the senior wards.

I want to elaborate on that “not acute enough” predicate a little further. All patients I’ve so far met who’ve been transferred to longer-term wards, did not display the symptoms they were committed with, upon their transfer. Hence, it is not an issue of not getting out of their crises soon enough. However, this group generally does not consist of patients who are completely fine when they’ve stabilized, because of a number of social and psychiatric reasons.

In my own case, from the beginning of my stay here on, it’s been pretty clear that I couldn’t move back home, because returning home would be a recipe for another crisis pretty quickly. Now that I’ve stabilized, I’d likely be able to hold on for a while, but not for many months. Hence, it was already relatively clear that I’d stay on this ward for quite a while, just to bridge the waiting list for supported living. Now that I’m more stable, I in fact am willing to consider moving back home temporarily, if it’s clear where I’ll move from there and when - as to not make my hospital stay unnecessarily long.

But there is something else, that makes me much more worried about never getting out of the system. This involves the fact that, once I did not have suicidal thoughts anymore, I didn’t stop having meltdowns. This was not surprising to me, but it was to everyone else - who all chalked it up to unclarity about my future living situation. Hence, once the professionals realized that I’d pretty much stabilized - and once the psychologist who diagnosed me, had informed them that meltdowns are a chronic concern for me -, they swung all the way to the other end of the pendulum and decided I needed longer-term treatment “for my autism” and “didn’t I want to unlearn the meltdowns?” I am not sure if this was explicitly discussed at the “big meeting”, as the autism professionals meeting is commonly referred to, and Gerda denied having come up with her “you can’t do this if you want to be in society” logic, but one thing I do realize, is, in order to get out of the psych system, you have to be much better than you were before you got in.

Like, I came in with serious suicidal thoughts - after the crisis intervention team refused to commit me several times after a very bad meltdown. Well, I’m not suicidal anymore, so can I leave? No, I can’t, as I have meltdowns - that are far less severe than the ones I used to have before I came here. For meltdowns worse than my current ones - not as bad as the ones I experience while home though -, I could be in out-patient treatment in Apeldoorn. Now I’m in-patient (not committed because of the meltdowns!) and it’s said that I need to go to a longer-term psychiatric ward (the one in Deventer), and the meltdowns are the most convincing reason for that. So, I’m not allowed to get out of the psychiatric system, for a reason that I couldn’t get into it for a few months ago. This is a very good recipe to start a vicious cycle, always claiming that if the professionals had known you were this bad, you’d not lived in society for all of these years. It has to end somewhere, if I don’t want to spend the rest of my life in institutions - and I don’t want this.

Treatment plan time again. Really very few useful conclusions. Everything’s just going to remain the same or roughly so. I now have some weird sort of privilege 3 1/2, because I can go off ward for half an hour now. Not that I can do anything within half an hour here that I couldn’t be doing in fifteen minutes, but well. They say I can go onto the university campus. I don’t know the way there, so that is likely not safe, because getting lost is a significant trigger for meltdowns when I’m outside. They want to set up some thing where the social worker and nurses will take turns accompanying me to my home to surf the Internet - and the social worker even wants to push my sister (who lives 120 miles away) to participate. I was at home surfing the Internet for an entire afternoon alone last Tuesday, but apparently this doesn’t communicate the message. I guess they don’t trust me enough to give me the privileges I need to do this - because I cannot safely go many other places alone, and privileges are calculated by time, not location -, but they ended up giving me a nonsense privilege that isn’t on the system either.

The follow-up option, well, I think I made it pretty clear that I don’t want another training place, but they still nagged me into sometime calling some woman from the autism system who came up with this idea, and they told me to review my definition of “training” and investigate whether it’s the same as the proposed agency’s. As an argument, they used that this agency individualizes quite a lot. Well, my definition of training homes has nothing to do with being individualized or not - the training home I used to attend had a very individual approach, too -, but with the fact that the majority of my life will be structured around goals that are not mine anymore (like doing my own housekeeping) or goals that are mine, but that I don’t want to devote the majority of my life to (like lessening my meltdowns). In order to pursue my real goals - get into a new education, become active in political organizations again, etc. -, I don’t need to live in a training home.

We did agree about a few things, of which one may be surprising - I myself asked to keep the time-out policy as it is. Not because of the stupid arguments the professionals used - that it sets clear limits (it doesn’t) or that it’s a reinforcer not to freak out (it’s hardly anymore) -, but because, at this time and on this (currently very unquiet) ward, I may still be in need of a low-stimulation environment when I’m significantly stuck in overload.

Mostly, we agree about my general status. I am glad my doctor sees the improvement in me, too - and for the first time, I wasn’t annoyed when she said that there was nothing wrong with me within her scope of psychiatric practice (I have Asperger’s, but that’s as far as it goes). It does, of course, still sadden me that, in my current state, I should be able to get out of here, but can’t. The nurse who wrote the nursing contribution (not one of my primary nurses) wrote into it that I might be able to move back home temporarily, while waiting to move to my follow-up place. I don’t think this will work out, honestly: I can deal with being home alone for an entire afternoon, but not for days at a time. I think the majority of the professionals understand this. By the way, neither the psychologist who diagnosed me, nor Gerda were presnet. Both say their jobs are done - I don’t know why, but well.

Last week, there was a discussion between my doctor, the ward social worker, and a number of autism professionals. The aim was explained to me as finding common ground within the autism and blindness field. As it turned out, they selected a follow-up option for me and have been pushing me to “look on the positive side” and “wait till you’ve looked it up online (last Saturday), till you’ve called the woman in charge there (last Monday), till you’ve made a visit (planned for March 7)”, despite some well-grounded and in my opinion very important downsides of the place. I assume that if I make the March 7 visit, the woman in charge (and the ward social worker, cause she’ll accompany me) will push me to go for an admission interview - cause, as soon as she picked up the phone, the woman in charge invited me to visit, while I first wanted more info.

The most important downside is the fact that this place - a living facility for high-functioning autistics -, is yet another training home. And let this just be one of the very few variables about living arrangements about which I’m pretty much unable and unwillign to compromise.

When I make it clear to staff here that I’m not going to go into another training place, I get many reactions - other than the catch-all phrases “Look on the positive side” and “Wait till you’ve made the visit” - that are all variations on a theme. Here they are, with my comebacks.

• “You went to training home to learn to live independently, and you failed, so don’t you need more training?” Firstly, I didn’t fail completely - I still have all the skills I learned at training home, only I wasn’t able to apply them in a particular environment. Besides, this question assumes that everyone’s ultimate goal should be independent living - it’s not mine anymore.
• “Would you accept a living place if the people there could help you to eventually reach fully independent living?” I answered that one already - no.
• “You’ve always worked on blindness, but you’re also autistic, so don’t you need to work on autism now?” Firstly, the people at training home had quite a bit of expertise in both blindness and autism (in fact, they were the first to recognize my autism), so surely have I worked on autism. Secondly, I am always both blind and autistic (and all of my other qualities), so if you teach me a certain skill, it doesn’t matter what your area of expertise is as long as I learn the skill. And thirdly, there isn’t such a thing as “working on autism”, only working to improve certain skills and behaviors (where the problem can be explained by autism).
• “You may have been able to carry out your household duties, but you failed in your interactions with the many different people you’d encounter at university, so you might work on that.” Well, I really don’t understand that one at all: no-one ever told me I had poor social interaction skills which had to do with my not having learned context-based social rules, and it was most certainly not a factor in my falling apart.
• “But what about the meltdowns, don’t you want to unlearn those?” Of course, but do I need to be in an entirely therapeutic environment for that? I don’t think so (and if the professionals do, how would they have acted if I hadn’t been hospitalized?). Besides, once I’ve unlearned the meltdowns, you’re likely to come back to me with: “But what about the hair twirling, don’t you want to unlearn that?” That way, it never ends and I’ll be spending the rest of my life in training homes unlearning this and learning that.

What all these reactions have in common, to various degrees, is that they assume that, as long as you haven’t conformed to a particular person’s (subjective!) standard of achievement or apparent normalcy, you need to devote your life to conforming to that standard. Well, there are many other things - an education, politics, disability rights, my friends, to name a few - that I’d much rather devote my life to now.

These days, I’m sometimes happy that I wasn’t diagnosed with autism as a child. Usually, I’m sad about this, because an early diagnosis would’ve gotten me access to appropriate resources at a much earlier age and I wouldn’t have had to go through late childhood and adolescence knowing there was something “different” about me (other than blindness) but not knowing what, and feeling left out of everything. But the one big advantage of a late diagnosis is that I haven’t been in any intensive intervention programs at a young age, and, hence, had time left - outside of the not-so-intensive intervention programs I was in because of my blindness - to be a child. A consequence that followed this effect, was that I, having had time to be a child, had time to participate in school and other activities in which other children (like my non-disabled sister) participated, and, hence, had the opportunity to find pride in my childhood achievements and accomplishments. Now, all I can be proud of, is having gotten privilege 3 or not having had a meltdown for so long. This is not exactly what I dreamt of taking pride in at age 21.

“But,” you will say, especially if you happen to be psychiatric or developmental disabilities staff, “you are impaired (or worse yet, sick). Take pride in your own little achievements and don’t compare yourself to the non-disabled too much.” Well, you would be right if I wanted to drive, but I didn’t say that. What you’d be doing with such a remark - and what the nurses did with their comments on my refusal to go to yet another training place -, is to divide the consequences of my autism and blindness into those that fall within the scope of disability - dis-enablement by an unsuitable society - and which fall within the scope of impairment - intrinsic inability that is incompatible with a meaningful life within society -, and to decide for me which of my non-disabled peers’ life goals should be a priority for me, and which should not. Of course, if the nurses on my ward or my doctor get to read this, they’ll tell me that they aren’t making any decisions for me (yet) and that my autonomy matters to them and more of the like, but at the same time, I hear my doctor say “structure” or “safety” and I cringe, because I know we don’t have the same definitions of these.

I just found out that a woman whom I remember from some blindness lists and who is an active NFB member, has joined a preemie list and raised concerns about her blind daughter’s possible additional issues. In one sense, I’m surprised to find this woman here, admitting that her daughter struggles in school. The reason is that I often feel sort of intimidated by her writings to the blindness lists, where she often shows off about her child’s accomplishments, and points out that every blind person who isn’t as accomplished as they should be, should visit her and take some lessons from her kid. Yet as I thought further, I realized that, if you truly believe at the gut level that, with proper training and opportunity, blindness can be reduced to the level of a physical nuisance, you must actually seek to explain possible difficulties by something else - and the involved parent would choose to have their child evaluated for genuine problems before carelessly assuming they’re lazy or manipulative.

I often assumed it all worked the other way round. I mean, one of the reasons why I’m not particularly active on blindness lists anymore, other than for informational purposes, is that the first thing the people there yell whenever someone on the list or in a newspaper article doesn’t appear to conform to their standards of success, is “low expectations”. Usually, I am the one to point out that perhaps this person has other issues - identified or not - that may cause him to be not as independent or successful as the blindness community would like its members to be. I never meant to blame any failures on labels - because, after all, other disability groups claim (to a lesser extent) that their members’ disabilities don’t hinder their success, either -, but to point out that blind people are a varied group of people, with all individual strengths and weaknesses and a group among which other difficulties are not less prevalent than among the general population.

There is still a reason why you might look for labels, particularly if those labels can help you find appropriate services, treatments and copign strategies. I was labeled autistic, initially, not because I wanted a label, but because I wanted help in dealing with the meltdowns - and the blindness field couldn’t offer me that help. Now, as you get to understand your labels better, they invariably become things that you can use as explanations. But is saying that my need for clarity and structure can be explained by my autism, any different from saying that my need for braille can be explained by blindness? I don’t think so - only people are more likely to assume that I can learn to be flexible, than that I can learn to read print, simply because people always tend to asume that mental problems are more easily cured than physical ones.

But oftentimes, I interpreted the attitude the “blindness can be reduced to a physical nuisance” people had, to mean that, because someone’s only identified disability is blindness, they must somehow be able to achieve - and if they don’t, they must not have been expected to achieve. My parents still hold the opinion that I am only blind and have no other significant difficulties, and, from this point of view, draw the conclusion that I must be able to live independently and go to university. They claim I’ve been made dependent on care providers so that I figuratively cannot wipe my ass without a support worker present. This is not the case, but even if it were, so what? Does that mean that autism is as bad as the curebie movement claims it is, or that I still don’t try hard enough because I should be intelligent enough to do all sorts of things? In my opinion, it means neither. The autism label is useful in explaining some of my difficulties and directing me towards services, treatments, and coping strategies, but it doesn’t define me - just like my blindness label doesn’t define me -, simply because a person isn’t their labels.

I just finished a book chapter about relationships and sexuality for autistic people. The thing that most struck me was the fact that many autistics may have a theoretical understanding of sexuality and relationships that goes much farther than their practical and social-sexual skills. This is an experience I notice in socialization, too - like, I know what frinedship is philosophically, but my friendship skills are not too good -, but with friendship, it’s much easier to imitate other people. You don’t imitate others’ romantic or sexual behavior, because you’re much less likely to witness it - at least, that’s my experience, which may also relate to my blindness.

Besides, where is the line between friendship and romantic love? In one sense, romatic love goes farther than friendship, in that it is a more intimate relationship. On the other hand, it’s possible to fall in love with someone at first sight, while you can’t become friends at first sight. How do you know if you like someone socially or if you like them sexually? For the last five years, I didn’t care about this - since I realized that I claimed to have a crush on someone, and was extensively involved with sexuality issues (notably the GLBT community, claiming to be bisxual, for whatever reason), even though I had no understanding of what it feels like to have a crush on someone, so how did I know whether I truly was sexually attracted to someone? My sister claimed that you cannot rationally think out whether you have a crush on another person, but you’ll intuitively know it if you do. Well, that’s not the way emotions work for me, but if no-one could explain to me what being in love with someone is like, then maybe if I had a feeling that I didn’t understand and it related to someone else, maybe that was love.

The way I do theoretically understand romantic love, is pretty much if you would want to engage in sexual behavior with that other person. But I’ve never engaged in any intimate behavior beyond kissing someone on the cheek - which is supposed to be hardly imtimate at all -, so how can I tell whether I’d like to engage in sexual behavior with another person? I don’t even understand - practically - how to engage in any intimate behavior.

There may also be a sort of having a crush on someone where you don’t want to engage in sexual or intimate behavior per se. After all, the opposite also exists - for example, one night’s stands, that clearly have nothing to do with romantic love. Or do they? Oh well. But anyway, people say that they are in love wiht a voice, but even if I knew (practically) how to tongue-kiss (which I don’t), I’d pretty certainly not be able to do it to a voice. So romantic love is a deep form of liking someone based on some of their characteristics? Then how can that be, love at first sight, or nearly first sight? Wouldn’t you need to know the other person very well before you could decide if you liked them to the point of romantic love? Can yuu be in love with someone if you’ve only sat with them and drank tea and chatted? Apparently, as this is my most recent experience with romantic love, and I have no clue how to respond.

The boy is someone I got to know online, and I call him an acquaintance because I don’t call anyone my friend - because what if I called someone my friend and they didn’t agree? Acquaintance basically means that you know someone, so I can say that most people that I’ve seen more than once and for whom I have no other relationship title (like family or staff) are my acquaintances. The boy is a few years younger than me and also an Aspie. He’s often come to me, since once meeting me at university for a cup of tea, and now he visits me in the hospital almost every week. Last month, he phoned me to tell me he had a crush on me. I always wondered how I’d know, and people at my old high school had told me that some folks had been flirting with me, but this kid has the advantage that he straightforwardly told me, sothat I wouldn’t need to rely on body language that I couldnt’see or interpret. At first, I was like: oh, nice, hehe. Then, the comment got me to ponder the entire concept of romantic love, in order to determine if I could reciprocate his feelings. If my sister is right and I would know it if I were in love with the boy, I probably ain’t, but I know that emotions don’t work like that for me. It is the first time that someone else has stated their having a crush on me after elementary school, and I am tempted to respond in a similar way that I did in elementary school - reciprocate the affection because, well, duh, of course I like the boy -, but I know that at our respective ages of 19 and 21, love is not what it was then.

I have noticed something about myself, now that I’ve been in the psychiatric hospital for over three months: that I can’t stand it when someone refers to my difficulties as behavioral. There are some good reasons for my protesting against some statements that assume that my problems are behavioral, but today, as I read a book chapter about behavioral therapy for individuals with developmental disabilities, I realized that I’ve incorrectly been defying the entire concept of behavioral approaches to my difficulties.

One, in my opinion very good reason to protest when someone claims that I have a behavior problem, is when my so-called behavior problems are contrasted with any other category of mental disorders. Like, I became furious when a nurse claimed that “You don’t have a psychiatric problem, you have a behavior problem”. Well, le tme tell you: almost everyone who gets committed to the closed psychiatric ward, has exhibited some form of problematic behavior - othwrwise they wouldn’t have been committed -, so everyone on this ward has problem behaviors. Besides, on another level, each disorder within the DSM-IV, including pervasive developmental disorders, that my diagnosis is classified under, as well as so-called “real” psychiatric disorders like schizophrenia or bipolar disorder, is described in terms of behavior the patient exhibits. This was in fact the aim of the creators of the DSM-III in 1980, in order to make the DSM (that was previously heavily founded on psychoanalytic principles) more scientifically-based. And I still find it iinconsistent that there are so-called “behavior disorders” within the DSM-IV - but Asperger’s Syndrome isn’t one of them.

There is another reason why I oppose the logic that there are “real” psychiatric disorders and that these are different from so-called behavior problems, that is intervention-based. After all, if there are “real” psychiatric disorders and these are distinct from behavior problems, it’s obviously unethical and ineffective to use behavior modification strategies on the people with the “real” psychiatric disorders, if you think the problem behavior stems from the psychiatric disorder. Well, then a lot of nurses out here are engaging in a lot of unethical and ineffective treatment of many of my fellow patients. Why do they still ignore one woman when she keeps asking for cigarettes - whcih, they claim, comes from her mental illness -, and lock another woman’s room when she’s outside until she’s eaten something for lunch - which even I can tell comes from her severe depression? Both of these women have clear psychiatric illnesses, but both psychiatric illnesses indirectly manifest themselves in disturbed behavior, just like my autism (which you may call a developmental disability if not a psychiatric disorder) indirectly manifests inself in meltdowns.

Often, I’ve told nurses that they are too outside-focused and don’t care how I feel as long as I do what they want me to do. This obviously is an attack on behaviorist approaches, where I claim that it’s not just behavior that matters. I do think so - we’ve long passed the era when it was science to claim that people just behaved and cognitions and emotions didn’t exist -, but when I think of what strategies I do find helpful instead of which I don’t, I almsot invariably come to behavioral strategies myself - and the few that might be cognitively-based, still involve cognitive behaviors (eg. stopping a strng of thoughts before it overloads me). So what is the problem with some behavior modification strategies, that has gotten me to dislike the entire concept of behavior modification altogehter? It seems as if it lies within the statement that I often make: “I don’t *simply* have a behavior disorder.”

In the book chapter, there is a section about what behavioral therapy could be without a good functional analysis, and the author dared to call it dehumanizing. By this, he means the careless application of interventions without watching for the - often understandable - function the behavior has for the individual person, thereby simply punishgin a disturbing behavior despite its very genuine meaning. And I think: time-out policy. And I realize that I’ve incorrectly equated this careless why-bother-as-long-as-it-works intervention with behavioral interventions in general.

Finally got more privileges. We have a pretty simple system of privileges here in the hsopital:

• Privilege 1: Stay on the ward.
• Privilege 2: Go Off the ward accompanied by someone (with 2A meaning you can go out with staff only and 2B meaning you can go out with any adult).
• Privilege 3: Go off the ward for up to fifteen minutes alone.
• Privilege 4: Go out alone for up to an hour.
• Privilege 5: Go out alone for up to four hours (and longer with a doctor’s permission).

I used to be on privilege 2B ever since I came here three months ago. A week after my admission, my doctor asked one of my primary nurses whether he thought I could handle privilege 3, and from then on, this has been a recurrent topic of discussion. For the first three or four weeks, the reason I wasn’t getting privilege 3 was that the staff were worried that I would get lost - even though I was pretty sure I knew the way to all places within a fifteen minutes’ walking distance: the therapy rooms upstairs and the nearby cafeteria.

Then, the issue became that staff were worried I’d run off and do something dangerous. I was still pretty suicidal at the time, and knew this risk to be greater than my risk of getting lost, although even at the time I was pretty sure that the risk was still fairly small - it would have to be that I was in an acute crisis when the staff let me out, because otherwise fifteen minutes isn’t enough time to do anything dangerous, I thought. But because the staff knew I was suicidal, they didn’t think it would be a good idea to give me more privileges.

In early January, I finally got privilege 3 after asking to get more privileges so I could get off the ward when things were unquiet on the ward. However, the day before my privileges were extended, I freaked out while being outside with a nurse and stood still in the middle of the road. I now know this to be a dangerous action one can take with privilege 3, because the road I stood on was within a fifteen minutes’ distance from the ward. The nurse forcefully guided me back to the ward and reported the incident to his colleagues. However, the psychiatrist had already written a note to extend my privileges, and my doctor took this at face value when she spoke to me the next day: in between lecturing me on the dangers of standing in the middle of a road, she told me and the nurse that I had been granted privilege 3.

As soon as the psychiatrist found out about the incident one day later, she withdrew my privileges and I was back on 2B. That was also the day the time-out policy was introduced. I was fine behaviorally apart from one incident where I poured boiling water over my hand, that I didn’t inform a nurse about till more than a week later, for the next three weeks. Within these three weeks, a nurse asked me several times whether I wanted more privileges, but I declined to have it requested to the doctor because I feared losing my privileges again. Then, last Thursday, I was pretty irritable because of still being on the closed ward with privilege 2 etc. The nurse I spoke with proposed to ask a doctor about extending my privileges, but I feared losing them once again and wasn’t sure. Besides, the last time I asked for more privileges, in early January, the fact that I was irritable at my beign here etc. was the first stage in things going downhill. She reported it anyway and I was granted privilege 3, but it was noted that we should stick to my crisis signalign plan. There is nothing in the plan about privileges - I should write something into it, so that I don’t have to explain what it should say to every nurse -, but what is meant is that nurses should watch for signs that I’m having a meltdown and not let me out when I am. Some nurses whom I’ve explained the policy to, say this is logical, but there are nurses who believe that, when you have privileges, you should be able to take full responsibility for using them correctly at all times. Of course, as one nurse with whom I spoke about privileges yesteday, said, no-one on this ward can guarantee that they can take full responsibility for their privileges at all times. Does this mean they cannot have privileges? In my opinion, not necessarily. Like, in my case, mostly I’m fine being outside, but there are times when I am absolutely not capable of being outside safely.