Presume Incompetence

There’s an understandable saying in the autism world, that we should always presume competence. Which makes sense most of the time. It’s usually said by those who are speaking on non- speaking autistics. Just because they can’t talk doesn’t mean they can’t think. It doesn’t mean they’re stupid.

But…I don’t know that I agree with it being presumed all the time. Yes, presume understanding and comprehension and do talk to my child. But don’t assume they understand what you are saying. I just want you to acknowledge them. When I was looking for a helper, one woman came and walked behind my child like she was a piece of furniture. If she was standing there, she gently moved her so she could get round. Yet with my speaking children, she would ask to pass. Even if I had the money, she wouldn’t be here, that’s for sure. If I need to TELL you to treat my child like they’re a human, it’s too late.

But there’s the other side which I could totally relate to in a father who wrote about how it was better when his son didn’t say anything. People then could understand when he did things that didn’t make sense. But as soon as he was echoing lines he’d heard from shows, lines that were full sentences and therefore made sense, strangers assumed that because he ‘could talk,’ he could also act as typical children would. Like..he wouldn’t throw a huge tantrum because he has to wait in line. Generally, (if people aren’t dumb), they offer more grace if it’s obvious to them that the child is neurodivergent. And I’ve seen it in doctors’ rooms too. I actually am very ok when she makes her unusual noises. Any other unusual behaviour is then viewed in light of everyone already knowing “she’s got challenges.” They know the problem lies within, not without. It’s in her brain, not in my parenting. They’ll know the child can’t control their emotions as well as a neurotypical child can and give allowance for that.

There are more smiles from strangers when she’s making unusual sounds than when she’s crying. Nobody asks, “What’s wrong?” when she is vocalising. But when she’s crying and screaming, everybody asks why…

Today, I had another reason to prefer that people presume incompetence. Cos otherwise they look daft. My autistic child isn’t going to be the same as another’s autistic child. The skills that one has are skills my one might not have. Thing is when someone complained about their neurotypical children – as they do 90% of their time- I sent a video of my screamer. The session was 25 minutes long. I wanted to show how I don’t barge suddenly into their life just to complain about my children’s behaviour. I wanted to point out that it would be a better problem to have if I had a choice between disobedient, talking children and a non talking, extremely puzzling child.

Her response included telling ME , Mother Autism Veteran, that one family she saw in a video use photos to ask the child what they want and the child would then nod or shake her head

You don’t say!! Why did I never think of that? Why not ask me if MY particular angel CAN focus on photo’s and learn what they mean? Why not ask if there’s any communication possible besides pulling me, screaming? Why presume she’s capable of not only attending to the photo and knowing what it means, but that she will then NOD or shake her head depending on whether it’s what she wants or not? Thats actually quite a big leap. I’d be so so happy if she could indicate a yes or no. I’m happy THOSE people have found a way their child is able to use for communication. But mine can’t. Ask. Don’t assume.

And who said that what my child wants is even possible? Or safe? What if she is screaming (in the videos) because she wants to throw cardboard box with wooden toys in it, into a pool of water and I’ve said no? Then what? The ability to nod will not stop her from hating the word “No.” No picture will stop her screaming for 20 more minutes and trying over and over again to get me to balance a bottle of water on an upright pen.

I truly dislike unsolicited advice. If I haven’t asked for tips, it’s because I don’t want any. If I haven’t asked for a Bible verse to ‘comfort’ me, it’s because I don’t find comfort in Bible verses. The Bible is an educational tool for me. Something to encourage my growth, not to make me feel like things are better- except for giving me the hope of a better destiny. Not unless there’s a specific verse that promises that my angel will one day stop crying and screaming and will most definitely speak or type or write. Nothing else, NOTHING else in the Bible will make anything I’m going through FEEL better. It won’t reduce the strain, stress and anxiety. And I mean those in the most psychological and textbook form possible. I live those as soon as I open my eyes in the morning. “Oh no. Another day, another three or four tantrums over wanting to eat all day or wanting to dump cardboard into the pool.” And the rest of life isn’t on pause while all this plays out. I’m still the teacher. Cook. Cleaner. Therapist.

I’ll put some video (audio) up on my YouTube version of this post to illustrate. And seriously, if you lived it every day, many times a day, you’d also want to tear your hair out if someone were to make a suggestion that implies you have not thought deeply about your problems nor tried to solve them.