Last week, I received a psychological report by someone from the Center for Consultation and Expertise, which gets involved when long-term care agencies can’t handle complex care needs, like apparently mine is. The consultant psychologist had spoken to me and my team, and had administered a few psychological questionnaires. She had also analyzed the information that the institution keeps on file about me, which has a summary of my history and parent perspective (from the parent interview part of my autism diagnosis in 2007). She would’ve wanted to speak to my parents – although she never asked me -, but neither I, nor my parents would likely feel like that.
The report said some things about me that I didn’t know or remember. In the summary of my history, for example, it said that I was sometimes physically aggressive towards my mother as a young teen. I thought I was only physically aggressive at a much younger age, and was verbally aggressive as an adolescent. Apparently not. Makes me feel quite guilty.
There are also pretty harsh words about the painful experiences I’ve gone through. I won’t quote them here as they’d reveal the nature of my experience, but they are much harsher than those I’d spontaneously use myself. I know where they came from – I said “yes” when questioned -, which makes me feel rather guilty as well. Is that survivor guilt or is it something else, like truly being ashamed of exaggerating? I sometimes feel that I’ve been dragged into this by suggestion. I have some vague memory of being questioned about sexually inappropriate behavior (which I didn’t go through apart from a few minor incidents at about age six and twelve, by the way) and other trauma way back in late 2009. I never told lies about what I’ve experienced, but maybe its consequences, like the DID and PTSD symptoms, are exaggerated.
That was also what the report talked about: PTSD. As I wrote last Sunday, I checked its criiteria in the DSM-IV and unfortunately may meet them. It was not assessed directly, but my team considers me to have its symptoms, and my personality profile and other scores on questionnaires are consistent with it. ON Tuesday, I realized that I sometimes lose time for when I have a flashback, so that could explain why I feel it’s pretty minor. By the way, my dissociation was hardly discussed, but that may be because its full reality didn’t come to my team’s mind until into the assessment process.
Lastly and most annoyingly but least surprisingly, the consultant questioned my autism diagnosis in favor of believing my social problems are due to my blindness. That is at least what I read between the lines – but I’m known to read things between the lines that aren’t there. Her expertise is in blindness, so it is not surprising that she’d attribute social problems to blindness. She had some things about my hsitory wrong and incorrectly assumed I’d been living mostly in a sighted world, while I’ve been in special education for half my school life. However, the assumption that I’m unable to read non-verbal communication, is of course correct. I would assume that this possibility has been considered at my 2007 diagnosis, and at least I explained about it to the psychologist back then. So did my parents probably, being that they assume that all that is wrong with me, is blindness. All tests she administered – AQ-test (again!), Dewey Story Test (measures social insight) and some semi-structured interview -, indicated I’m on the autism spectrum. I scored higher on the AQ-test than back in 2007, which I attribute to my reduced social contact. It is also apparent that I’m easily overwhelmed and have trouble organizing stuff. So the consultant concludes that I’m on the spectrum after all, and my nurses reassured me that no-one is going to take away my diagnosis. Would be a problem if they did, since then I wouldn’t be able to go to the workhome. By the way, the consultant also briefly mentioned adaptive problems, but I’m not sure whether these are attributable to my autism, blindness or both.
The recommendations are pretty vague. Go on with treatment for my difficult experiences, and work on my self-acceptance, or something. I’m also supposed to need “intensive care”, due to the complexity of my problems. What this means, is not clarified, and, in the Dutch system, this could mean a lot of things. However, the head nurse is pretty confident that I can remain in my current care class – two classes higher than the one I was in in 2009 – when my funding needs to be renewed at the end of this year. One is supposed to work on my independence, but without me losing support in the areas that I need it. This seems obvious, but, according to the report, I’ve been overburdened a lot in the past, and I am clearly afraid of losing needed services.