When I wrote my report on 2006, it mostly concerned what I expected to change in 2007 – because I ended the year on a crossroad in my life in many respects, and with many uncertainties about the next year. Particularly, 2006 ended just after I had had my admission interview at mental health Apeldoorn. In the yearly review, I wrote:
There is that other side, of course, that emotional or behavioural part of my situation. I used different terms for that in 2005, but mostly just called them “some of my difficulties” and wondered about their significance. I said that would likely be an important issue in 2006, and it did, and indeed, mostly just like it’s ever been since 1998. I hope that in 2007 it can be an important issue in some other ways than it’s always been ever since 1998, but I’m pretty skeptical as it requires communication that I lack.
Now, of course, I know that my mental health and behavioral difficulties did become a significant issue in 2007, and not at all like they’d always been ever since 1998. Communication played a significant role, although that was by far not always appropriate communication.
On January 3, I had Renee ask my family doctor for a referral to mental health Apeldoorn. She let me go to the appointment on my own on January 16, and I managed to answer the doctor’s not too open-ended questions. Same with the February 2 discussion with her and the psychiatrist. After this appointment, the admission team discussed me amongst themselves and decided they wanted to interview my parents. To my surprise, even after we’d had a major argument, they came to the appointment and answered the doctor’s questions seriously. This got me diagnosed as autistic on March 16 and started in treatment on April 25 – or April 19, if you count in the one discussion I had with another psychiatric nurse who hadn’t cared to read my file..
There was no immediate improvement, and a few months ago Arda even told me that I deteriorated after having been diagnosed. I doubt my diagnosis had anything to do with it, other than in some respects. Like, I admitted to needing more structure, but this is not deterioration in my opinion, just getting what works. She meant that I freaked out more, but I attribute this mostly to the stress of the upcoming move to Nijmegen. I believe that, had I been able to continue my discussions with Jeanine, I would likely actually have improved, even though it’d needed to mean not just my learning to control my behavior – which is important, of course -, but others learning how to react. There’s an E-mail from Gerda in which she reacts to criticism from me by stating that she “just sets limits”. She meant to say that she didn’t mean to treat me unfairly, but some behavior just isn’t appropriate and she’s going to hold me accountable for that. I agree, but sometimes also realize that it isn’t just about limit-setting. I’m slowly learning to use alternative means of communicating, but many do require someone else to accept the alternative means. For example, recently, a nurse here gave me a card that has “Do you have time for a talk?” on it, for me to use when I want to speak with a nurse but cannot ask for it. This requires all nurses to accept that I use this card. Now it is fairly likely that they would, but very often in my discussions with Jeanine, there first was a lot of talking about my side of the behavior, and then Arda jumped in to say that it still wasn’t acceptable, and there was no time left to find ways in which I could navigate Arda’s limits while taking into account my own difficulties.
I had my last discussion with Jeanine on July 4, but after this, had a major relapse, so Jeanine arranged for me to see a psychiatrist on July 25, who prescribed me the Risperdal. Taking that medication was hell from day three on, first because of possible side effects that weren’t being taken seriously, and then on top of it because of its lack of effectiveness. Because I had no psychiatrist in Nijmegen yet, my family doctor prescribed my Risperdal after the August 1 move, and she thought I ought to control myself behaviorally. Well, duh! If I’d been in a state of mind to do so, I hadn’t taken this medication in the first place! Eventually, I tapered my Risperdal starting September 27 and was completely off it on October 8.
The move itself was very poorly arranged. I learned from that that I should’ve jumped in right from the start on February 14, when I was told that I was done training and needed to move out by June 1. The correct order of events should’ve been that you first determine what sort of living situation and help a client needs, and then make arrangements to seek one, not the other way around. I should’ve jumped in and asked directed questions the day Arda told me that I had to move. Instead, Arda wrote “my” letter to student housing in early March, E-mailed the student counselor my preference of living place, while I hadn’t chekced it out, and had Marjan find service providers in Nijmegen. At the same time, she kept telling me that I actually needed to be in housing with support available within walking distance, but such places don’t exist in Nijmegen. I don’t know if such places exist outside of supported living facilities – we never actually sought any -, but I also know that, if anything, I was to stay out of supported living. There’s this idea in training home staff’s minds, that your living arrangement defines your level of independence, with supported living being the least independent form of living and living on your own with itinerant support being the most independent living form. This is, of course, only dependent on how well you can handle unexpected events, which may be one skill of independence, but is not the only one.
Then, once housing had been arranged, a service provider had to be found. That was another battle. First, Philadelphia refused me because they had no experience with autistics living in their own apartments, and next, the agency for psychiatric patients, called RIBW, suggested we go to Werkenrode instead because they had more experience with blind autistics – as if I couldn’t instruct an RIBW support worker on how to handle my blindness. Werkenrode agreed to provide support, and we arranged for me to get to know my new support worker. Getting funding was another thing, but we ended up with sixteen hours of independent living support a week – which was said to be quite a lot, in fact, pretty much the most one can get who lives in their own apartment.
After the move, my former support worker quit after only a little over two weeks, and two new ones came around, plus Gerda. I have very little memory of how things went while I lived in my house in Nijmegen. I remember that there was a support worker almost every day, that mobility went horribly, that I had phone calls with Gerda every night, E-mailed her a daily evaluation, and felt that I couldn’t hold on. My support workers really tried the best they could. I don’t want to suggest, with one of my previous comments, that all they did was setting limits. They tried to help. They – well, especially Gerda -, wanted to keep me at home. In fact, in my treatment plan, someone has written that Gerda said that living alone seemed best for me until now. I cannot remember Gerda actually having said that during the discussion, but she may’ve thought so. In any case, she did all she could to prevent me from being committed to the psychiatric hospital. I am not sure at what point she called the psychiatric emergency service in Nijmegen to ask them to please take me seriously if I made it to there. I never made it to Nijmegen, because I was picked up by the police on Apeldoorn station after having threatened to run in front of a train, and subsequently committed to the hospital in Apeldoorn. I was transferred by ambulance the next Monday.
Meanwhile, there’d not been much mental health contact apart from the psychiatric emergency service being called several times and the psychologist in whose admission procedure I was stuck repeatedly informing them that he wouldn’t recommend I be committed. After I’d become suicidal and had been committed anyway, he proceeded with his diagnostic procedures. Here, everyone pretty much decided that my old autism diagnosis was incorrect, and there was little wrong with me psychiatrically apart from having an adjustment problem (as it’s called) after having lost my old structure and started at university. University, by the way, was once again fine academically, but otherwise hell, despite my taking a half courseload. In any case, I felt my diagnosis taken into question and everything that went with it, was gone. Even though I got re-diagnosed after having “lost” my diagnosis for only a month, I still have difficulty putting together all the pieces of the way my mind works that I used to remember and threw out the window the day my diagnosis was being questioned.
Am I making progress now that I’m here? Not really. I play cards a lot here, and last night, I made up a card game analogy to how it’s going with me. There’s a game we often play – I don’t know its English name -, in which each player first gets a number of cards (seven if you play with one pack), and the goal is to get rid of all your cards, but if the other player lays out a certain card, you gain a certain number of cards. For me, it seems that I keep laying out one or two cards at a time, then the other player lays out a card and I have to take five cards – or nine or twelve or fifteen, depending on whether I had a card to lay on theirs and which one they laid on mine. In the end, I have a half pack of cards and cannot oversee it at all, and give up because I’ve lost track of which cards I can lay out in what order. In the card game, I’m getting better in keeping track of my cards. In life, I seem to have gotten worse – or I’ve gotten more on my plate. This lack of view of the big picture is, by the way, a characteristic of both of my disabilities.
I spoke of communication in the 2006 post. That is still not what it should be. In fact, I never communicated well enough that I needed help, then ended up in a situation where appropriate communication wasn’t needed anymore. Of course, my suicidal threat was communication, but it isn’t how one is supposed to communicate – but at the point where you’ve become suicidal, it doesn’t take a lot of communication to make clear that you need help. I didn’t want it to get to this point. In fact, when I said that I hoped my difficulties would be significant in some other ways than they’d been ever since 1998, I probably didn’t mean a psychiatric hospitalization. It strikes me that, a year ago, I imagined staying out of mental health because I wouldn’t be able to ask the family doctor for a referral, and now I’m on the closed ward. I didn’t want it this way. I wanted 2007 to have gone radically differently. Now it’s over and all I want is for 2008 to be a better year, in which I can take steps to improve my life.