Last Thursday, I had my first appointment at mental health Nijmegen – well, after the get-to-know-you last July. My diagnosis is being done all over again, because the doctor who formerly diagnosed me as autistic, threw out the original testing material and she did not write down why she diagnosed me with an ASD, so the psychologist can’t tell what my diagnosis was based on. This means I’d need to fill out a questionnaire and have a structured interview done, and my parents will need to fill out almost the same developmental questionnaire they got back in February. But psychiatry and clinical psychology are not objective medical specialties, and so with this new evaluation, there is a chance of getting new results – in other words, that my autism diagnosis might not be confirmed this time. Does it really matter?
In part, not really. I don’t buy into the belief that the label you’ve been given by a healthcare professional, defines who or what you are. When I was labeled autistic last March, I didn’t get any more or less autistic than I’d been during the twenty years before, and what will come from my current diagnosis, won’t define how autistic or neurotypical I am: my neurology isn’t going to listen to evaluation results. I’ll still be the same after this evaluation as I am now and I’m now still the same as I was last year – other than my having changed due to circumstances. It’s only that, before last March, I had no official diagnosis, then my diagnosis was an ASD and now it may or may not stay that way. It won’t change who I am.
Unfortunately, the rest of the world doesn’t think so. Autism advocates would discredit me if I lost my diagnosis, because how can someone who isn’t really related to an autistic person, claim to advocate for autistic civil rights? I never cared for this a lot, as my post on March 14 illustrates. This was, of course, two days before my diagnosis, but I didn’t know this at the time.
Did I not worry about what diagnosis I might get? Well, I did. In fact, for a while I worried about being diagnosed with something purely behavioral, like a disruptive behavior disorder or psychopathy or something, because of what I came into the doctor’s office with – aggressive behavior. But I didn’t worry about what actually the disorder was called. After all, contrary to training home staff, I didn’t come to be diagnosed – I came because I wanted help. If I had been labeled something like a DBD, I would most likely have asked what treatment the doctor suggested for that. In fact, I actually agreed to be referred for treatment more than three weeks before I knew my diagnosis.
Now things are a little different. Last February, I’d been looking for help in dealing with my difficulties for nine years, without ever having been properly diagnosed or treated. I and others had had many different paradigms about what caused my difficulties, and accordingly tried many different approaches – in fact, at training home, there was a new one every month -, before we’d ended up in the doctor’s office on December 12, 2006. I was about to have yet another paradigm stuck on me, and yet another approach tried. Yet this one started to work, though I moved not even three months after having started my discussions with Jeanine, and how much progress do you expect in such a short time? Now, I finally found something that helps me, so it’s understandable that I’m not as open about possibly different paradigms as I was before.
Then there’s something related to this, that is worse than ending up with a different paradigm than my old one: ending up with no paradigm at all. In other words, the “fine fine” answer. I half expected this last February – not anymore last March, because I’d been referred for treatment by then -, and it is one of my biggest fears now. What if I were declared fine?
Well, it’s pretty obvious: if I’m said to be fine, I’m likely to lose the support I have now, and will most certainly not get the support I need. After all, someone who is fine apart from blindness, should be able to live independently and manage at university. There’s still this little voice in my head who says that I am capable of this. I picture myself calling Gerda the day I’m given the “fine fine” answer, to tell her I don’t want Marion or Adrie to come anymore, cause really I’m just blind and someone who’s just blind should be able to live independently. Forget about Andrea, my buddy in the autism college project. All blind people arrange their own college education, according to the student counselor, so why don’t I? My mother still believes it’s all a matter of self-confidence, and I’m sometimes tempted to get rid of all support for a while until I fall apart – but how do you define falling apart? -, if only it were so that I won’t risk being given the “fine fine” answer.
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