as small as a world and as large as alone

5:58pm May 27, 2014

theflightofanintrovert:

What makes me mad is that I’m 16 and I have been diagnosed with Aspergers recently. I’m not mad that I’ve been diagnosed, I’m actually quite relieved but that fact I have known that I’ve had it since I was 12 and nothing’s ever happened about it, I’ve spoke to teachers, parents and even councillors and it’s taken 4 years for someone with a PHD confirm what I already knew. If it had just been accepted when I was 12 or maybe younger, I would have had a much easier time at school, and I would have been understood a lot more. My parents didn’t want to label me, which I do not understand, is cancer a label? No it’s a condition just like autism but for some reason things like cancer are okay but autism is not. It upsets me because it is already not easy being autistic specially when I knew I had it but couldn’t explain it to anyone. I really don’t think that autism is known around the world as much as it should be, because what I don’t think people understand the most is that we really can not help it, we were born this way and we will die this way and that seems a bigger issue for people without it than people with it.

I was angry for a long time for similar reasons.

When I was 14, my doctor told my mom that I was autistic and that I was similar to an ‘idiot savant’ in that my abilities were all over the map in a huge way.  But what he wrote down on paper was PDDNOS.  Only when I turned 19 did he write autistic disorder on paper.  He knew all along that I fit the criteria, but he wrote PDDNOS because he felt like “labeling me” at a young age would be a problem.  What turned out to be the problem was that even though he changed the PDDNOS diagnosis to autistic disorder, some service agencies saw the PDDNOS as the only relevant diagnosis because it was given in childhood and the autistic disorder one was given in adulthood.  And that became a problem sometimes.  All because he was afraid of “labeling”.

I do understand that this was actually a very common practice to do to autistic people in the nineties – to diagnose PDDNOS or AS instead even when the person fit the full criteria for autistic disorder, because it was seen as less stigmatizing.  But it still pissed me off for a really long time, especially when it caused me problems in the practical world.

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