Published on 12, July, 2020
Sometimes I wish, if I was going to have a disability, that I could have one everyone agreed was difficult. With autism, some people act like it's an absolute curse, and others say we need to celebrate neurodiversity and that there's nothing wrong with being autistic and it shouldn't even be thought of as a disability, that sometimes it's even advantageous, and that I'm being a mega drama queen for being upset about it. I mean, I find myself getting really sad and angry with myself for the way I am, but then I hear a lot of people saying there's nothing wrong with being autistic, so I try to be positive, and then just when I'm doing well being positive, I'll hear someone say autism is 'every parent's worst nightmare' or something along those lines. And then I go back to being despairing. I just don't know what to make of it. Does anyone else feel messed with by this?
Yea. It's not just with autism but with a lot of things we've got into this weird culture where we can't say something is a disability or something without people jumping up and down in anger because "It's not a disability," Well yes it is. If something needs to be diagnosed, then there is obviously an impairment problem. On the other hand, we have the other extreme where autism is seen as the worst thing in the world as you said. it's like everyone has just become more extreme about so many more topics. Either autism is just this thing people get diagnosed with because of 'quirks' etc or it's the wose thing in the world. No in between. Personally, I'm so tired of how much autism limits my life, and then the fact that the people who think being autistic is just a 'difference' and not really a disability will say, "Well it doesn't have to limit you!" showing a misunderstanding completely as far as I'm concerned.
"Well it doesn't have to limit you!" showing a misunderstanding completely as far as I'm concerned.
I understand this entirely. I've recently made a decision to go back to an old employer so I can work from home again, I simply cannot work in an office anymore. I can't lie and so I was very open and honest with the MD and told her I am un-diagnosed, going through diagnosis, but I am 99% sure etc etc. (I have never shared this with anyone outside of my very immediate family so this was huge for me).
At first though I sat in her office and totally froze and was unable to speak. Because of my masking this behaviour took her completely by surprise and she began to really worry about what I was trying to say. Then when I finally uttered the word Asperger's she said "oh, is that it. I thought it was something terrible". In the moment that was almost a nice thing to say and I know her intentions were good.
Actually though, she had just seen the real me for the first time and completely missed the negative effect it has on my life - I'm changing employment because of it for crying out loud! After that came a complete lack of understanding... whilst all the time maintaining that she's 'on my side'. She wanted me to stay and I felt incredibly awkward about how she kept saying that. Apparently I'm making a mistake and will be going backwards in my career. I honestly don't care for a career that will destroy me mentally... I'm leaving to be happy again. There was no understanding of how difficult everyday life is for me. As with all mental health issues, my battles are invisible.
It does limit me and I'm still learning my limitations and I very much intend to live within those limitations from now on. I've had enough of making myself ill for the sake of people who don't care or even try to understand.