Services, Yes. Cure, No Thanks.

I’ve been reading Harold Doherty’s Facing Autism in New Brunswick, a prominent pro-cure blog, where he asks whether the autism diagnosis should be narrowed back to its original DSM-III meaning, thereby removing Asperger’s and most “high-functioning” autism from the DSM. The reason he claims that this move is needed, is that neurodiversity activists are incorrectly comparing ourselves to “low-functioning” autistic children and might be robbing these children off “medically necessary” treatment.

In the comments section, people go even farther, asserting, for example, that intellectual disability, being non-verbal and dyspraxia should all be a mandatory part of autism. People speculate on how soon most Aspies will come back from neurodiversity if their diagnosis is removed from the DSM and they no longer qualify for services. My guess is that those who actually need support services, will no longer say that autistics don’t need help, but then again they aren’t saying that now. Those very few autistics (who generally refer to themselves explicitly as Aspies, so I don’t see why Doherty et al. should be afraid of these), who actually do say that Asperger’s isn’t a disability and Aspies don’t have difficulties, would not be bothered if it were removed from the DSM. In fact, clinically speaking, if they truly don’t have significant impairments in functioning without help, they don’t meet the criteria for a diagnosis at all even under DSM-IV-TR.

However, I think Doherty and his followers are confusing cure with services. “Services” can refer to positive, supportive assistance that will help us live with autism in a mostly NT world. This includes, for example, learning techniques for sensory regulation, learning an alternative communication method, etc. It also may include, once we are adults, help in living in the community, such as assistance with housekeeping, managing paperwork, recreation, etc. Some of us will actually need a carer to take over some of these things. Furthermore, even many “high-functioning” Asperger’s people will at one point in their life need psychotherapy because of depression – which is so common in Asperger’s that Baron-Cohen even considers it a mandatory feature (in which case I would lose my diagnosis, despite all my other difficulties) – or anxiety, and some of these are on medication for these. Some others, like myself, have possibly harmful behaviors, like aggression or self-injury. Behavior modification may help some in preventing someone from getting hurt, but in the long run we need coping strategies to deal with whatever is causing this behavior, such as sensory issues. Some of us will always need help with this, while some eventually learn to manage on our own.

I have yet to meet an autistic, a small number of Aspies on Aspergercentric forums like Wrong Planet, who often make it very explicit that they are NOT like “low-functioning” autistics aside, who claims that autistics don’t need services or don’t have a disability. However, like I said, support services, and actually also some therapy that is aimed at changing our ways of acting and thinking (eg. occupational therapy for sensory issues or cognitive therapy for depression), is not the same as intensive training, for many years, in acting how the NTs act, in an attempt to scratch off every bit of autistic experience (or at least the outward manifestation of that experience) that is in us. It is that which we don’t want, and please stop assuming that we don’t think of ourselves as disabled or we don’t need services until that is what we say.

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Autism Speaks Quacks Again

Autism Speaks is quacking again, and I’m not even sure whether I should waste any blog space on them. Their newest video,
I Am Autism, has yet more of the inevitable drama that we’re used to from them, but with even less information. I have no clue actually what use their is in a dramatic voice-over squeaking out horrible words with no meaning. There isn’t a single word of autism awareness in there. It isn’t even the dramatic my-five-year-old-is-still-in-diapers whine. Really, they could’ve replaced “autism” with “Brazilian wandering spider” and it’d make just as much sense. Go watch the video and have a good laugh, I’d say. By the way, when I searched for the video, the parodies came up first.

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On Progress and Punishment

Despite the fact that I recently earned a time-out threat system again, after a year without one, there are still nurses telling me that I do better meltdown-wise than I used to do. These are nurses here at reso, who cannot compare me to how I functioned at my former ward, because they didn’t know me back there. So they must be referring to how I functioned when I first came here half a year ago. However, I didn’t have a time-out policy then, so apparently I wasn’t as much a danger to myself, the other patients or the staff that I would need one, right? And now I am allegedly better, but I am apparently so dangerous that I need a time-out policy.

Of course, staff could be talking about absolute progress, as in: “Hey, you’ve learned a lot in these six months. You aren’t there yet, but you’ve learned a lot.” This would make sense if a consequence, like a time-out system, existed for not making enough progress: absolutely, I could’ve made progress, while having regressed relatively to expectations, therefore still being eligible for punishment. But that is not what time-out is for: it is to avert or prevent danger. And if a particular behavior is dangerous if it comes from a person who has been here for six months, it must also be dangerous if it comes from someone new – and it may even be possibly more threatening psychologically if the behavior comes from the newcomer, because the other people will not yet know whether the person’s screaming and door-slamming might possibly end in physical assault. It isn’t like, if you get attacked or insulted, you must have more tolerance for it because the patient just arrived, is it?

And even if you are inclined to give a newcomer a second chance, because that patient might not be used to the ward yet, I am assuming you are not talking about tolerance for behavior that is actually dangerous. I wouldn’t hope that any staff member would tolerate it if a new patient assaulted someone else. Assault is dangerous no matter what. And if you decide that door-slamming is dangerous, because it is a threat to the other patients’ psychological wellbeing or something (I never understood the rationale behind it, anyway), it is equally dangerous no matter who does it or in what stage of treatment they are. And just so everyone is familiar with what the Mental Health Act says: seclusion, restraint, forced drugging etc. are only allowed as a way to prevent or avert danger from the patient to himself or other people, and can explicitly and emphatically not be used as punishment. You may think that you can set higher behavior standards for someone who’s been in treatment for six months, but this is not the place in treatment plans where seclusion fits in.

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Oppression in Social Work: Is It Possible?

I recently started reading Fighting Monsters, an interesting blog by a social worker. Social work, as I was taught in my introductory college orientation class, involves facilitating vulnerable people’s capaacity to act upon their civil roles. It seems therefore surprising to find that social workers are often involved in procedures that will essentially take some of their client’s liberties away. For example, in the UK apparently, social workers carry out Mental Health Act evaluations – in the Netherlands, only a psychiatrist can do this -, and both here and there, they are involved in incapacity and best interest assessments.

The fact that social workers participate in these procedures, even if they never wanted to take away a client’s liberty, runs a risk of leading to oppression, in this case from the very people whose job it is to prevent this. In my own experience, a social worker has been particularly forceful in her decisions about where I would live – or at least, for which places I would be signed up. All the while, eveyrone claimed that she was doing this in my best interest, but I had good reasons to disagree.

It seems rather paradoxical to me that someone who is supposed to facilitate your civil capacity, is actually taking some of that capacity away. To me at least, it didn’t seem as surprising if a doctor was dominating me, since her job was to treat mental illness (or behavioral disturbance, for that matter). However, if a social worker thinks I cannot make decisions independently, what would be the protocol for decision-making on my behalf? Would it depend on my level of (perceived) competence? Is there any situation in which a social worker can ethically suppress a client’s attempt at communicating her wishes? Even if social work originally wanted to stay away for force, of course, however, it doesn’t mean this cannot be part of a social worker’s job now.

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“Where Will You Be In Three Years?” Revisited

One day in September of 2006, I was seeing a psychologist at my former training home’s agency. I have never really understood what his job was supposed to be, but he ended up recommending I be referred to mental health. Anyway, in the midst of a very long, exhaustive conversation, he for some reason asked me where I thought I would be in three years. I said that I had no idea, but proceeded to fill in some details anyway. Later, on September 22, 2006, exactly three years ago today, I wrote about this painting of a future image for myself on this blog. I didn’t really say that I had no idea what I might be like in the future, but really that I had many ideas that were all blurring together, some incompatible with others. Mostly, I made a clear distinction between the capable college student image and the incapable, disabled person image. My definition of “total incapability” was like this:

Yet there is also this part of mine, that totally incapable girl. She thinks she requires a lot of assistance cause of behavioural/social/communicative difficulties – not just disruptive behaviour. She sees evidence, in the fact that I was at first unable to buy a railroad ticket a few weeks ago (cause the situation confused me), that she can’t do these things for herself (I can buy railroad tickets perfectly well) and, in the fact that Renee left cause she didn’t know what to do, evidence for the idea that she’s truly too difficult to handle and belongs in the mental health system. This is not saying I need 24-hour care or something, but what it says is that I have fundamental impairments in social/behaviourral/communicative functioning that aren’t going to go away once I’m learning to adjust to some emotional difficulties, and that do require to be addressed after I leave training home.

In a sense, I am glad I no longer hold this standard, cause it’d require me to have less than zero self-esteem. In fact, by this definition, the verdict of “total incapability” was already out by February 21, 2007, when the mental health Apeldoorn doctor referred me for treatment.

Do I no longer struggle with these images, now that the black one has more than come true? Well, I still do, but in a sense, it’s on a different level. I was, after all, very, very naive at the time even to hold the possibility that my behavioral, social and communicative issues would go away without any treatment. This just isn’t going to happen: as an Aspie, some situations will always be problematic for me, and I must learn coping strategies for handling them. My meltdowns are also quite likely to continue to be a weakness for me, and I must learn alternative behaviors instead (and just for the record: I never said I didn’t want this!). I’m pretty sure I was already aware of this to some extent back then, since why else would I so consciously want to disassociate myself from this “autistic” image?

Of course some beliefs I held back then are incorrect in general, but may possibly be correct in my case. For example, I assumed that needing assistance in structuring one’s daily life or in interactions with others, would be intrinsically incompatible with competitive employment or regular education. There recently opened a supported housing accommodation in my city just for autistic college students, and their explicit goal was to help more autistics graduate, so that they could actually get real jobs and get off benefits. In general, it is a huge prejudice to assume that this is impossible. After all, what does assistance with structuring one’s daily life have to do with college-level intellect? Maybe some of these people will end up in dreaded academia, but why is this the nonsensical field I wrote it off as in 2006? We need professors, too. In fact, sometimes I wish I knew how to acquire the skills to go back to university.

That is my current most optimistic self-image: just going back to Radboud. Not really to get into academia someday, since I can’t look that far to the future and if you want to get into top graduate programs, you have to plan for it way in advance. Actually just to enroll in an undergraduate program – my boyfriend is making me jealous, since he started in philosophy this year -, and see that I get my Bachelor’s degree. I am not sure whether there are any independent living requirements for this – the supported housing place I mentioned above, would not be suitable for me, since it is in many ways a training home.

My current black image, the worst self-image that I can think of, involves me in an isolation room of course, and from there on, another long stay on a locked ward. I’ve been there already, and I know that I was way better behaviorally when reso rejected me from there last year, than I was in 2006. Of course, the staff are telling me that, should I ever need to be sent for a time-out at the locked ward, it will only be for a short while, but I don’t believe this.

Unlike maybe in 2006 – I am not sure, since I don’t remember it that well -, I also have in-between images. There is this image of me ending up in some community-based supported living accommodation and doing volunteer work, taking informal classes at a community center, studying at Open University, and/or attending some activity center to pass the time. There is also an image where I end up staying in some (semi-)institutionalized placement but function quite well and don’t need threats or time-out systems anymore.

Of course, I know that life can get yet even worse than being on a locked ward. Prison, a state mental hospital for criminals, and a homeless shelter are all worse. I hope I won’t end up coming back to you in 2012 to tell you that this is exactly where I ended up. Then again, I guess I need to be lucky that these places won’t have Internet access.

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Treatment Plan and Time-Out Threat

Oh, I *never* learn psychiatric roleplaying! If you’ve had at least a reasonable treatment plan meeting, even if what gets written up about it contains major and minor faults, shut up about it for at least two weeks and see if the staff will carry it out first. They most likely won’t, and they might blame you, but they think they have a reason for this if you’re the one criticizing errors first.

The psychologist ended up E-mailing me the plan on Tuesday morning, and was expecting me to read it before I went to the 11:00 appointment with her. Since I rarely check my E-mail in the morning, I wasn’t aware of this until she called the ward to say so. I quickly read through the plan and then went over to her office. Even though with such little prep time it would be senseless to have me comment on the plan, this is what she asked me to do, so I did, but I was pretty blunt. We got into an argument about learning practical skills and whether this would be useful at this point, where she threw out bookish neuropsych wisdom that doesn’t seem to apply to me. That of course wasn’t the main point of the treatment plan, since the main point was my needing to learn to better deal with stress in order to prevent meltdowns. But, for some reason, she thought I didn’t want this anymore. Uh-huh: we had had a good treatment plan discussion less than two weeks before, in which I’d made some suggestions for what might work for me and she had made some, and we had both agreed that it was wroth trying to work on early signaling and what might work in these stages of prevention. I asked her what exactly I had said that I didn’t want, and she got to sum up exactly this. I got frustrated, because I had expected her not to (want to) remember what we’d been discussing – that is how treatment plans go if they’re good -, but I’d not expected her to blame *me*. At my former ward, if a treatment plan meeting went well, it was almost 100% certain that whoever was supposed to carry the thing out, forgot about it, but I’ve never been told that I was the one torpedoing it except if I was.

For some reason, I was able to keep myself together till the end of the discussion, but ended up hugely melting down when I came back to the ward. And again the next day, when I wanted to ask my primary nurse, who had attended the good discussion, what I should do about this – because I consider it a waste of my time to have to explain that I do want to cooperate a million times. The nurse told me off quite bluntly a few times, because she needed to be in a million meetings, and then ended up telling me that she didn’t know what I should do and was going to be on the night shift the next days. I melted down again and it was very bad, apparently, since psychologist needed to see me on Friday. That was totally vague and unlcear, and included some time-out threats, a lot of mumbo-jumbo about needing to protect “the group” (the other patients), a back-and-forth argument between me and a nurse who was never present during any of the meltdowns about how the nurses had treated me, and a lot of soft talk about the people not wanting to need to seclude me, blah blah. Psychologist was surprised that I had melted down after my previous discussion with her, but ended up telling me that I didn’t want to talk about my behavior, again! This was not what I’d said, stupid: the only thing that I’d said from which she could draw this conclusion, was that I didn’t want to be nagged at about a minor incident (involving one snappy yell at a fellow patient who’d been listening to loud music constantly for over a week) for 45 minutes when I was otherwise good behaviorally and felt very stressed. This minor incident was not comparable to what happened last Wednesday. By the way, the attending nurse used lack of time as an excuse to “have to” seclude me. I have resolved to be as uncooperative as possible if I suspect that this is a major factor when I am being put into time-out, so that all the legal and bureaucratic action that needs to be carried out, takes far longer than the time it would take the nurse to just listen to my concern and try to come to a solution that doesn’t involve punishment.

The psychologist is still telling me that we absolutely need to work on preventing meltdowns, and on Friday she used a tone of voice as if I was unwilling to do so again. It all depends on how you are going to achieve my not melting down: if all you do is throw out a time-out threat, this might be semi-effective now, but is not going to work in the long run. You see, I need to go into the community someday, because that is what resocialization is for, and we all (should) know how hard it is to get someone committed back to hospital if they’re a burden to the community. You got to do a hell of a lot more than screaming and slamming a door (what I did on Wednesday) before an emergency service is even going to take you seriously. So, we got to choose: do we want a temporarily effective threat-based system of handling meltdowns, that might be be a qucik fix in the short term but is going to prevent any further progress towards community placement (hell, the psychologist even refused to admit me here when my former ward still had the time-out threat system, despite the fact that I could be transferred to a locked ward for a time-out), or we are going to work on preventing meltdowns and de-escalating them once they occur. This is more difficult for all of us, including me, but the chances of success in non-psychiatric settings are far better. I choose this, but I doubt whether the staff agree.

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Short Placement and Treatment Plan Updates

I’m stressed out by placement and treatment plan worries, so I’m not inspired to write much. I went to visit a blindness agency in a nearby town last week. They were planning on setting up a supported living accommodation for blind adults in early 2010, but that project got stuck on something bureaucratic that I forgot. Fortunately, they have two older living places, one on their institution grounds and another in the community. Both use to be training homes for people who go to or have recently graduated special education there, but they are planning on turning them into more long-term placements for young adults. The community-based home will have a place by the summer of 2010 and might have one by as early as this November. Both places have 24-hour care apart from 9:00-3:00, because residents are supposed to be at school or work then. That was the main problem that arose during the discussion: I have not enough day activities and am not yet sure where I will get them. We also didn’t discuss my autism-related needs, but we may in the future, since I am not yet officially signed up there. They are supposed to have discussed me in “the team” today and the social worker will call my social worker about the results.

The treatment plan discussion was also last week. That is, the discussion among the treatment team here. I wasn’t present – you are supposed to discuss your treatment with the psychologist and your primary nurse and then they will take that over to the rest of the team -, so I’m not sure what came of it. The psychologist should’ve E-mailed me the plan, but didn’t. If what I discussed with her and the nurse, has been accepted, it sounds quite good. However, I mistrust treatment plans – I’ve learned at my former ward, that if it’s good, it will not be followed anyway.

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