Okay, so those of us in the autistic community see that phrase, 'not like my child', on a near daily basis. Not only is it dismissive of any opinions we may express over our experiences with being autistic but it's mind blowingly absurd anyway. I'm a 43 year old woman. I'm 'not like' anyone's child, autistic or neurotypical.
But that's not what this little rant is about anyway. It's the assumption that my 5 year old child must not be 'like their child' simply because I talk about 'acceptance' instead of pissing and moaning about hating my life.
Parenting is hard - full stop. Don't tell me I don't understand and then list off all the areas where your child struggles or needs supports in an attempt to make them sound as 'bad' as possible. Newsflash - I could say all the same things about my child but I don't. I don't because she is a human being who doesn't deserve to have her difficulties spread all over the internet so her parents can get sympathy and attention from strangers. I don't because she is all kinds of adorable and funny and awesome and that's what we embrace and wish to share. I don't because so many of the things listed as being so horrible don't strike me as being a big deal anyway. It amazes me that the supports we offer young children in the toileting or safety departments suddenly become something to cry to strangers on the internet about when it's an older autistic child/adult involved.
If people put the energy into appreciating their child's strengths that they do into lamenting their child's weaknesses we wouldn't need to keep having this awareness/acceptance debate. We are human beings. We deserve acceptance and not the negative 'awareness' that is constantly being spread about us. When you are demonizing your autistic child for internet sympathy you are demonizing ALL of us and, yes, we take that personally.
*image description: caption with red background reads - 'I need your acceptance much more than I need autism awareness' alongside a photo of a smiling blond haired 3 year old girl who happens to be my incredibly adorable daughter.
I am going to preface this post by saying I am not going to kill myself. I'll even say it twice. I am not going to kill myself. Now that that is out of the way...
The disability community has been abuzz recently due to articles like this - People on the autism spectrum live an average of 18 fewer years than everyone else, study finds and I have hesitated to share them on Facebook because I don't want people, my children specifically, to worry. Turns out I have too many thoughts on the subject to keep my mouth shut, though.
I have an odd mixture of horror and relief reading about the suicide stats. Nine times more likely to commit suicide? 14% of autistic children think about suicide? I'm horrified for my tribe but relieved to know on some level that it's not just me being 'crazy' again. This sense of doom that I have lived with my whole life has a reason to exist.
I'm a bi, Autistic whose mother committed suicide. That's, what? Like the Trifecta of Doom? The other day I thought,"I probably have something like a 1 in 10 chance of not killing myself", but it actually made me giggle. Partly because I'm kind of twisted like that but mainly because I have this little voice in my head that gets really scrappy when people try telling me what I'm supposed to do. Oh, wait...you're saying I'm expected to kill myself? Pffft. Bite me. Just for that I won't even if I really, really wanted to.
And there are some moments when I do want to. Life can be really hard and the thought of a nice long dirt nap has its appeal but I would never do that to my family. I don't want my kids to ever know that feeling of doom. Right now I'm at that magical age (43) that my mother was when she died. I had professionals tell me for decades that this would be a hard year for me but, again, don't tell me what I'm supposed to feel or do. Scrappy kicks in. And while the subject has been on my mind lately it has had much more to do with the Swedish study and less to do with any feeling of connection to her.
The sense of doom is just something there to live with, like the tremor or the feeling of being a freak. It breaks my heart to think that so many of my tribe feel the same but at least we're not alone in this. This world is not autism friendly so it's not 'crazy' to have thoughts of escaping it. We just need to try and focus on the things in it that are worth staying here for.
