I can’t speak for your child.
I keep coming back to this. I can’t speak for everyone.
I’ve had a lifetime of people assuming they know what I think by my actions. Assuming that they know who I am at a glance.
People still make assumptions. When I write things, those who don’t want to listen dismiss me easily. They say that she doesn’t know the hardships of autism.
Suddenly, a few words in, and my ability to write means they can see into my world. They were there when I couldn’t speak. They were there when I shut down. They were there when I didn’t get it, over and over and over.
I don’t want to justify myself. I don’t need to prove a level of pain to be worthy of having a voice.
You can’t speak for my experience.
But here’s the thing, I can’t speak for yours. I can’t speak for the experience of the stereotypical Sheldon-like character, I can’t speak for the experience of the non-verbal adult with multiple co-morbid problems. I can’t speak for the people that I nod along to, or those who I disagree with.
And I don’t want to.
They’re not my stories to tell.
Is it fantastic theory of mind that gives other people the belief that they can understand it all at a glance?
I wanted to say that I understand. In a world that seems hostile to autism, I can understand being defensive. Even more so when this unfamiliar voice seems to say, “I know your child and will speak for them. You cannot.”
If someone neurotypical said to me, “I understand your husband better than you ever will” I would know it was ludicrous. I would know that they don’t know his passions and fears. They don’t know the films he sheds silent tears to. They don’t know how his eyes light up when I walk in the room. They haven’t heard him laugh so hard that he can’t breath. They don’t know where he’s most ticklish.
In a general sense, they may well know more about neurotypical people, but not my person. That’s not how people work. We are complicated. We are built of the little moments. The good ones and the bad.
I don’t have good theory of mind. So I know that I cannot speak for your child. But I will speak for me. I have found my voice now.
Yesterday I was asked what I have in common with other autistics. It took me a while to answer. “Shared experience” was all I could come up with. Just like I have with other women. All I have bonding me to such an enormous and diverse group is shared experience.
Certain moments in time when we all had a comment or a struggle or a joy. We all reacted differently, we all took away different things, but we all shared that.
Imagine you grew up on an island of men as the only woman. Everything about you, your height, your muscles mass, the way you went through puberty, all these things are different and you know that.
Then one day another woman turns up. You see instantly that you have the connection of shared experience and suddenly you’re not alone. You don’t know that person, you may have nothing else in common, but you’re no longer the only one.
I don’t want to speak for anyone, but I do want a voice. My voice is not a set of instructions, it’s a web of thoughts, it’s a pattern of me.
I want to be understood. I want other people to be heard too.
When a neurotypical talks about themselves, it doesn’t need pointing out that chances are their needs or thoughts may not be shared by neurotypicals with severe learning difficulties. That’s a given.
It needs to be a given on the neurodiverse side too. That doesn’t mean we can’t all learn something from each other. It doesn’t mean the shared experiences aren’t important. By learning as much as we can about the spectrum of human experience, we can build patterns that work. We can find new ways. We can stop making assumptions based on our own thought processes.
More funding needs to be put into all aspects of support for people with autism. This includes full access to mental health services, supportive therapies that enable children and adults to live their lives as independently and happily as possible without forcing anyone to change their behaviour to make other people more comfortable at the expense of their own comfort, trained care workers, and other vitals like respite care for parents and carers of autistic people with high needs.
I don’t speak for your child, but that doesn’t mean your child doesn’t have their own voice to hear. We just need to find new ways to listen.