Tuesday, August 9, 2011

This is not an invisible disability.


What's up there Y'all lovely NNT readers? Sorry these posts are all sporadic. You see. The internet here at the house is possessed.

Be Afraid


Sometimes I'll be all writing a blog about how much being NNT is awesome, and I'll be getting to the really profound part where I compare myself to Buffy the Vampire Slayer and then the internet will disappear.

There goes your internet...


So Then I'm all annoyed and can't remember what was so profound about Buffy the Vampire Slayer and sad that I don't remember what I was writing about.


And the internet is all
HAHAHA. We're running off with all your best ideas!

But I am going to finish this one. Promise.

I have an honest face



So I wanted to talk today about  invisibility. On my last post we talked a little about how I am not going to let this disability define me.

Today I want to talk a little bit about how weirded out by the term "invisible disability" I am.


So you see because I take these things literally I imagine that my disability is an actual entity, like an invisible person. No one else can see him but me.



But in reality, it's not like that at all. My disability is real. And it has a visible effect on my life. Most of the time it makes life harder.

It's harder for me to connect with people.

I don't always understand what they want me to do. Sometimes, people don't understand me.

I don't remember what someone wrote down on a piece of paper at work yesterday, but I can remember entire conversations that I had 3 years ago.

But my disability is very much visible. Most people just don't know to look for it.



It's true it doesn't change my appearance the same way that a broken leg, or blindness might. And it's not as obvious as Down syndrome. But the signs are still there.

After all, the doctors don't just pull a diagnosis out of thin air. (I hope)

Looks Legit


There have to be signs along the way


The main issue is that the Bubba's of the world don't really know what to look for. No one ever told them. No one ever told most people.



And that in my opinion is the fundamental problem. There isn't enough education around ASD. Most teachers and other educators don't know enough about the problem, at least they didn't when I was in elementary school. What is actually a manifestation of my disability was taken to be bad behavior, or bad parenting. In our rural town, there was no one who knew about ASD.


What is this 504 plan of which you speak?

When my parents went to get accommodations at the school for me, they were met with confusion and distrust. Administrators just wanted to dismiss the whole thing. Teachers were mistrusting of the diagnosis. You could tell that they were thinking
But she doesn't look disabled. Obviously her parents just want special treatment for her.




Other parent's just didn't get it either. They thought my Mom was just a bad Mom, you know, totally unable to discipline her child. They saw my parents as being lazy or incompetent. They saw me and my sister as being willful, or just ornery.


Like congress

I hope that now parents don't face that same discrimination, I hope that people are a little more understanding. I hope that children are a little bit more accepting.

Readers: it's been 15 years since I got my diagnosis, and at that time no one knew what the Autism Spectrum was, is it the same for you now? Do people have any idea about Autism Spectrum Disorders? What do they know about it?  I would love to know please leave me a comment!

4 comments:

  1. When I was a kid, there was no 'spectrum'. I think if there had been, I would would have been diagnosed. I have been lucky that the SpEd director at my kids' school has an autistic child herself, and therefore understands things SO much better. I don't know what I would do without her.

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  2. ASD was never really even heard of when I was little, there were just kids who were different, odd, or 'loners'. There is so much more awareness now among educators (at least where I am in Alberta) and the support for integration is so much more about teaching the other students to be accepting, rather than expecting the ASD kids to try to act 'normal'. Thank goodness for change, and for blogs like yours that give the rest of us just that much more understanding and insight.

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  3. ASD awareness in my son's school and community is very high, as it is the home of the K-5 autism program for low functioning students. My son is a high functioning Child, so he is not part of the program and is in the classroom with a para for help. The school is very welcoming to my son, and every time I walk into the school I always get a comment on how awesome my son is. My son is a quirky kid and leaves footprints in the heart of most of the staff he has worked with. His 1st grade teacher really wanted him to come and be in her class again this year, and has even offered to his new teacher to allow him to come and hang out in her class on his bad days.

    I am very thankful for the community we landed in, as they are very nice and from what I can see, see my son for who he is not his diagnosis.

    ReplyDelete
  4. Sadly my experience has not been as positive, in a small rural town where I have the 'naughty kid' and I 'can't control him/poor parenting' is the main preconception. And my kid is pretty far up there on the high-functioning side. Significantly poor education of educators and other parents, who seem to cause more problems than the kids..... the kids model their parents behaviours. Invisible = doesn't exist, apparently...

    I speak from experience, had this been a diagnosis when I was a kid, I'd be a far happier person. Social Skillz - wha?!

    ReplyDelete

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