Long before either one of us was diagnosed with autism I knew that my kid was not like my friends’ kids. Now that she’s in school and has been identified as an ‘exceptional’ kid I have had to talk to a lot of ‘professionals’ about those differences and my related concerns.
But no matter how I try to explain her and how she reacts to things, or how she does or doesn’t function in certain kinds of situations, they can’t seem to wrap their heads around it. So many people clearly don’t really believe me until they sit down with her and start asking her questions.
Even then, when I tell them, for instance, that she won’t self-advocate – like on a profound level – they really don’t get what I’m saying. She won’t say, “No, I don’t want to do that” to a friend. She won’t say, “Hey! That’s mine, give it back!” if someone takes her shit. She won’t ask the teacher for help when she doesn’t understand a question, she won’t tell you if someone has done something hurtful. When other kids would say no or put up a fuss she just goes quiet and has a kind of micro shutdown.
But when I try to explain this people always say, “Well she’s going to have to learn to stand up for herself” or something of the kind. Like, I would love it if I could help her to self-advocate, I would love it if I didn’t have to worry about someone hurting her and never finding out. But what no one seems to be able to offer me is a way to actually do that, and it’s got me thinking about how much people’s answer to any concerns I do have is that “she needs to not be that way.”
Part of this gets expressed around her attachment to me and the separation anxiety she gets when she’s having a hard time for any reason. But what they don’t seem to get is that I am THE ONLY person who understands how her mind works and can not only read her emotions quite well, but am often able to discern what is upsetting her. I am her assistive device, no app can do what I do. If you were a kid who can’t recognize or talk about your feelings, and your reaction to anxiety or distress was to become really quiet and not talk at all then you’d freak out too at the sight of your only interpreter and comfort provider leaving the room.
So the real question is, what if this is just who she is? What if her brain just isn’t wired to self-advocate in the ways that everyone expects her to? What if what she really needs is time and space in a nurturing environment that allows for that? What if this is another thing that will eventually develop on its own if she’s just allowed to be?
All of my worst parenting moment have been the result of me listening to the “experts”, and all of my best parenting successes have come from being present with my kid and responding to who she is a person. I only wish all these “experts” could take a step back and just let her be her glorious self.
BIO: Bio: Fozzy Craig Lai is a queer, autistic parent to a wickedly funny autistic nine year old. When not playing Minecraft with their kid they make and sell self-care kits for spoonies of all kinds at www.lucillesews.com