I need to talk about something that has been bothering me all day. This morning, when I logged on to Facebook to check my notifications, I saw one from the admin of a group
I’m in was in – I’ve been banned now! The group claims to be one that celebrates the positives of autism. This admin had tagged me in something he had posted as a reply to my hate speech from a couple of days ago. Yes. You read that correctly. Hate speech. Me!
So, what did I say that caused such a strong reaction? Well, not a lot, actually. Here’s a little bit of background…
A friend of mine (J) was added to this group this week, and the mutual friend of ours (M) who added her shared one of J’s memes in the group. This meme had the name of J’s page on. Still with me? Good. So, this admin chap decided that while he liked the sentiment of the meme (“make today so awesome yesterday gets jealous”), he took offence at the name of J’s page. The name of her page has something of a double meaning, both positive about autism and not so, but this admin chose not to see the positive meaning, deciding that instead, the page name is “anti-autism and, therefore, bigoted.”
There was a bit of to-and-fro, where J explained the meaning behind her page name and I joined in by explaining how I understand the page name and that it certainly is not anti-autism and that J is a fantastic advocate for her autistic child as well as others.
However, this admin decided that we were being negative about autism as J mentioned that sometimes, on the bad days, when autism really takes hold of her child and things are difficult, she wishes it would leave her. Not meaning that she wished her child wasn’t autistic, but just that some days it’s hard as a parent to see your child struggle so much.
Now, to me, as a parent in a similar situation, that’s just being real, being honest. We have good days, we have bad days. We have fantastic times and utterly shit times. I would really doubt there’s a parent out there who hasn’t wished, at some point, even just once very briefly, that autism didn’t factor into their lives. You know, on a really bad day, when you’ve had no sleep and your child is having meltdown after meltdown, or being violent, or destructive, or self-harming, or repeating the same phrase over and over and over, or smearing faeces, or refusing to go to school – again, or any of the other behaviours that we parents see all to often. I would imagine most of us (but not all, I know) would never wish our children to be anything other than autistic, because it’s what makes them who they are, but I bet we’ve thought, even just fleetingly, that life for our children would be much less complicated if they weren’t.
So, I dared to question this admin, asking him who he was to negate another parent’s situation and feelings. The way I see it is that everyone’s experience is different and we have no right to judge as we don’t know what that parent is dealing with. His reply was that he is “autistic who fights for autistic rights and it gives him every right to negate a parent’s feelings who is saying negative things about their autistic child’s autism” He then bravely closed the thread for further commenting so I can’t even respond. Slow hand clap…
So, just because as a parent we say sometimes life can be a bit crap as we watch our children struggle with a condition that is still largely misunderstood by the world at large, we are bigoted and anti-autism. But because he is autistic himself, he has the upper hand, as he has first hand experience and obviously has never struggled at all or had a negative experience, either himself or with his children. Life’s a bed of roses for him, clearly.
Well, guess what Mr Admin? You do NOT have the right to decide how I feel about my child’s condition. Not your circus, not your monkeys. I absolutely hate this ‘them and us’ attitude that is displayed by more and more autistic adults, especially towards non-autistic parents (although he assumed that’s what I am – I pulled him up for that too). Why shouldn’t I advocate for my child? I am their parent, and, while I do not completely understand what they’re going through, I’m trying my damned hardest and I’m living it too. Good luck with your happy, clappy little group where autism is the most wonderful thing in the world and woe betide anyone who dares to disagree.
Autism is wonderful – lots of the time. It’s colourful and flappy, and bouncy and exciting and funny and tickly and amazing. But let’s get real here. It can be hard. That’s not my opinion – I see it in my daughter and others. And I see it in the effect it has on my family and other families. Anti-autism? Not me. Realistic? Definitely.
Kelly is a mother of two – her son H and daughter Tink. H is home educated, Tink is autistic. Kelly is a self-employed Virtual Assistant… Life is busy!