Posted in Autism, tagged Autism, Causation, Cure on March 28, 2008 |
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Why is it that curebies always seem to want an environmental cause for autism? I mean, I don’t generally follow the vaccine-causation debate. I think as far as mercury goes, it’s stupid, because mercury poisoning and autism are clearly two different disorders. On the other hand, I won’t deny that there could be some children or adults with autism where the autism was caused or agravated by some environmental factor, like a toxin or a viral infection. I don’t believe that, in order to be a neurodiversity activist, I need to claim that my or others’ autism is congenital. In fact, in my own case, I assume multiple causative factors: some genetics (my father has some autistic traits, but I have no diagnosed autistics in my family), premature birth and resulting brain damage, and possibly other factors. But why on earth does it need to be an environmental toxin causing the autism?
It seems to be that some curebies believe that, because autism should be environmentally caused, it can be treated – and if it’d been a genetic, congenital condition, it would not be cureable. Well, let me tell you one thing: many diseases that are environmentally caused, cannot be treated, let alone cured. The inevitable comparison factor for autism, at least according to the curebies, ie. cancer, comes to mind: everyone knows that some cancers are caused or agravated by environmental toxins, and many are partly caused by lifestyle factors, and yet removing the environmental toxins is generally not possible and will not treat or cure the cancer. If a treatable condition is found in a specific child, such as high levels of mercury, and that child happens to be autistic, then of course chelate away. And if a child truly does have a predisposition for vaccine injury, and the resulting condition might agravate autism, then of course the parents may be angry with the vaccinne business. However, that is all individual children we speak about, not the general autistic population.
In my opinion, I do not dismiss the idea that some autistics might’ve become autistic in part because of environmental factors, but this is a case-by-case issue. And to cure or not to cure has nothing to do with causation, but is a wholly different medical and ethical and disability rights debate.
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So, politician Geert Wilders’ anti-islam movie has finally been released. According to the news, it’s not as bad as had been expected, and it’s basically just a collection of old news clips and the like. Well, politically, of course I disagree with the suggestion that islam equals terrorism, so I’m still not too content with this movie. But, one thing I do hope, is that now the endless fussing about it in the media will finally be over. The extreme media attention Wilders got, leaves even more room for him to ventilate his radical ideas and to bring out aggression among fundamentalists. Besides, I’m fed up with that entire Wilders person and the continuous stream of media attention for a small number of terrorists who happen to be muslims, that I’ve been needing to put up with ever since 9/11. Sometiems, it makes me sarcastic to think that terrorists can just stop carrying out real attacks: they just need to suggest that they’re planning one, and the entire world will be turned upside down to avoid it anyway.
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Had my treatment plan discussion again yesterday, but this one finally went relatively well. For a change, I was first to have a say. The nurse also reported the nurses’ observations, and the social worker and recreational therapist updated us on their opinions. My doctor had very little to say because I have not had significant psychiatric concerns. My time-out policy has been stopped, because it’s not been needed and I don’t consider it a significant negative reinforcer anymore.
Just before we went into the discussion, the social worker came up to me saying she’d contacted a supported living facility in Apeldoorn that we’ve been looking at for a while, and I could visit them on April 1 (and it wasn’t a joke). This is a good thing, cause the setting sounds really perfect for me. Of course, there are still the worries that something will stand in the way, but we’ll go see then.
For the time being, I’m on a waiting list to move to the open ward in a while, but it’s a fairly long waiting list a nurse there told me, so I’m not sure I’ll move anytime soon. I like the open ward much more than this one, as it’s much quieter. However, I’m also afraid that the doctor there will decide on a whole new policy regarding me – my current doctor decided yesterday that she’s pretty much just for the medical stuff and I should ask the social worker about my follow-up process. This is a good thing.
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Today, it’s one year since my autism diagnosis, and I wonder if it changed me. Of course, I don’t need to wonder whether I changed during this year – obviously I did -, but whether the diagnosis is at fault. And, associating from there, I wonder whether services that I got because of my autism have helped me or, like my parents think, only caused me to deteriorate. Does my diagnosed autism explain existing difficulties, or does it give me an excuse to invent new ones?
I want to say the autism diagnosis didn’t change me. I want to set the facts straight, that I never did well in high school and had been falling apart from late 2004 on. I want to make clear that I went to the rehab centre in 2005 because I wanted to improve my blindness skills – and I did improve them. That I went to training home in 2006 to refine my independence, and that I learned quite a lot as far as practical skills go, but failed to implement them into a stressful daily life. I want to say that I went to mental health Apeldoorn because of my meltdowns, that had been going on for many years. This is the one thing my parents agree with. I want to say that my diagnosis didn’t change my plans – after all, I was still going to study linguistics at university and live on my own. I want to say that I didn’t choose to get into crisis. I want to say that I still want to make something of my life. I have dreams of going back to school. And yet, there is still a voice in my head that says that if I truly want to prove all this, I ought to release myself from the hospital, go back home, kick out all my support staff, make sure I get a housing transfer to another city where the universtiy staff don’t know about my failure in 2007, and go back to university as someone who is just blind. I succeeded – at least, on the outside – for twenty years, so why not more?
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A few weeks ago, I spoke with my doctor because I wanted to know about the policy regarding me after March 7. After all, I was pretty sure that I didn’t want to go to the Deventer facility, but everyone told me to wait till I’d made the visit. I feared being kicked off the ward if I decided against going to that place. Well, now I know this didn’t happen, but at the time, of course, I didn’t know this yet. However, when I asked for clarification, my doctor’s first reaction was: “Isn’t it logical that you, being autistic, have a need for clarity?” In other words: “You ask for clarity regarding your policy, but you’re autistic and your autism causes you to have an increased need for clarity compared to normal people, so there’s really no need to clarify.”
Probably, my doctor didn’t intend to sound like she was consciously not taking into account my disability. I assume she hadn’t yet made up her mind about the possible scenarios after March 7, so hadn’t yet made a decision about her approach. This seems strange to me, since in my view, there would be only two options: either I’d go to Deventer – in which case I already had been informed about the follow-up process – or I wouldn’t go, but maybe I overlook some things. However, the way she spoke to me, it sounded quite a lot as if I ought to stop asking for clarification because non-autistics don’t have this need for clarity. So what? I’m not a neurotypical, am I? I’d have been fine with her telling me that she hadn’t yet made up her mind – even though I considered it quite strange -, or that there were so many scenarios that she wasn’t able to explain all of them to me, or whatever the reason behind the unclarity was. However, please don’t blame the disability, because that communicates that there is no need to make accommodations because the person wouldn’t need them if they weren’t disabled. Rather, explain why you cannot make an accommodation for a disabled person. I know that I’m blind and autistic, so there is no need to inform me that my need for accommodations is caused by that. Rather, inform me of the limits of your capacity or willingness to accommodate, so that I know what to expect and so that I can be reasonable in the accommodations I request.
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Went to the Deventer treatment/training place on Friday. At first, the treatment coordinator (psychologist) there just told the same story I’ve been hearing countless times about what this place is all about. Turned out to be even worse than I’d expected: there are not two, but three or four different wards, through which you will be moved during the course of your training. And well, it’s just training, you know? Exactly the kind of stuff I got in Apeldoorn, and which I’ve drawn tired of.
I eventually made it clear. I got frustrated and eventually got to explain about the training I’d already had, what it’d been like, what I’d learned and why I’d still gotten stuck while living independently. The woman then seemed to understand why I didn’t want more of it. You see, I practically have many of the skills to live independently, but cannot access them when there’s a lot on my plate. The woman seemed to understand and got to think about supported living places. She came up with a few, but most certainly have long waiting lists and one she wasn’t sure about. The social worker would be looking into that.
I was afraid I’d be kicked out of here today because of the fact that I’m not going to go to Deventer. Of course, this ward is not the nicest place to be, but the last few times I’ve been to my home, didn’t go too well. Then today the recreational therapist came to me and said he’d been convinced that Deventer was a good place, and I was like: Oh my God, they’re going to nag about it some more! A nurse said that this morning the social worker had infomred the team about the fact that Deventer didn’t seem suitable and that we would be looking into other options, and that the team was okay with that, but I didn’t know this when the recreational therapist made this comment, so I assumed it’d been discussed during the morning team discussion. Apparently not, so I’m not sure how the therapist got to his conclusions, but anyway.
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