I have so many thoughts in my head and I don’t even know where to begin but here we go (hope you enjoy the ride & don’t throw up!).
The other day the CDC came out with new statistics and everyone reacted. People (Autism Speaks) started using the word epidemic. I found this offensive. I know that epidemic is sometimes used in a good way but mostly it is used to describe things like the plague. I am on many email lists so I received many emails about this topic. There was also a flurry in social media. And then to top it all of my husband felt the need to show me a news report because he apparently thinks I don’t pay attention to news related to autism. I couldn’t avoid it if I wanted to.
I tried really hard to get past the word epidemic and the other various alarmist language. I read about how there should be more services for adults and children. That is true. But it really goes deeper than that on so many levels. There are kids that don’t get services and then there are kids getting services by abusive people. There are kids getting services by people that don’t get it. Not all of them because clearly there are some awesome service providers out there. But very few people get it. You can’t crawl inside my head to know how I feel.
Somewhere in all of this there has been an increased flurry in autistics vs. parents. Maybe it started because someone like me reacted to how a parent reacted to the statistics. Words like cure, treatment, cause, national emergency, I hate autism, or autism sucks were used in a parents reaction to the statistics. An autistic says they are offended and a parent says something along the lines of: I love my child but I am frustrated and that is how I chose to express my feelings. The parent can’t understand why the autistic is upset. Everyone is upset because they feel offended, or defensive or all kinds of other emotions behind the words. The parent is trying to do their best. There was a great post written over on Just a Lil Blog about how these emotions get in the way. I hope Jim doesn’t take out a restraining order since I have referenced his post in one form or another about 5 times now. But it really was good.
I liked the section where he removed the word autistic when he was speaking about his kids. I also expressed this to someone today. They were commenting about their child and about how they don’t want to be told that they should embrace it. I wrote back:
I am not asking you to love it but I am asking you to stop saying that you hate it. smack me, unfriend me, whatever you feel necessary to do but please I respect you and I have respectfully tried to explain how these words make me feel (and potentially my son). Yes there are certain things that I can’t do or are harder for me to do, maybe because of autism, maybe because of my personality because really until recently I just thought I was shy or introverted. I have always been bright, great memory and more effecient then most people but until recently I just read that as gifted. Gifted introvert? Aspergers? I am a person and these are my traits, if you hate my traits you hate me. I get frustrated with my son’s behaviors sometimes just like anyone else. Frustrated with me, sure, I can live with that. Just as I am sure you are frustrated with me right now for posting this but I just needed to get it out of my head (like sheldon & the flag knowledge on The Big Bang Theory) laugh, embrace the quirky, help yourwith what he wants help with and accept the things he doesn’t want help with. And hope you will still be my friend because I want to have healthy conversations with people, I want to be respectful and I try really hard to not get offended or upset. We all need to work together to get the appropriate services and acceptance.