Explaining
autism is important
I'm
going to draw on something important here – my own experiences. So,
I was diagnosed at the age of 14, in 2007. And no one explained it to
me. Well, people tried, maybe. Just not very well. It wasn't
explained as a disability. It wasn't explained as something that
impacted me in every part of my life. It was explained as “well
this is why you have trouble talking to people and with social
interactions and why you have some of these behaviors.”
There wasn't anything about sensory issues or effects it had on
executive functioning or how it flavored my every experience.
Maybe
it was difficult to see how to explain it to a teenager who was also
dealing with some personal issues and hitting high school. Mostly, I
think the people explaining it to me didn't see it as a disability.
My 504 plan in high school (a step below an IEP), from what I knew of
it, sought to ease my passage through high school. And it did, enough
that I didn't have to self advocate very much or recognize that I had
a disability. I just thought “Wow, I suck with people, this must be
why,” and left it at that.
No
one explained a social model of disability to me that would have
helped me understand the impact it had on me. One of my acquaintances
looked up my diagnosis on Wikipedia, and that was how I understood it
for the next several years. I already knew I had ADHD, so maybe I was
just used to being told I had this and that.
It's
not enough to tell someone their diagnosis and expect them to find
out everything on their own. I mean, Wikipedia was the extent of
knowledge found on my own. Some people may call that handholding, but
I call it decency and saving someone a lot of pain and trying to find
themselves. As it was, I didn't figure out anything about autism
until I went to college and met a couple more autistic people, one of
whom was already into neurodiversity.
I'll
say that again:
It's
not enough to tell someone their diagnosis and expect them to find
out everything on their own.
Related:
Telling
people they're autistic / autism is a disability
Social
model
I too experienced this. I called it a chose your own adventure.
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