It’s been kind of messy in my corner of the online autism world lately. Some big events happening and communities imploding and just… not good stuff.
I’ve written before (somewhere that I apparently can’t find) about trying to find my “autism lunch table”– a place to sit as a new kid in the cafeteria.
Don’t sit at the Autism Speaks table; all they talk about over there is the horrors of autism and how it will ruin your family and your child is now lost.
Don’t sit at Jenny McCarthy’s table or at any of the surrounding biomedical tables; the pseudoscience and anti-vaccine rhetoric is straight-up medically dangerous and they all feel like their kids need “fixing” and autism is a fate worse than measles.
Those I get. But then–
I don’t want to sit at the table of someone who says that, because they themselves are autistic, they automatically know what is best for my child. Not when that person thinks their life experiences will supposedly over wash the 3 years I have spent invested in getting to know my girls, their needs, their personalities, their quirks; the time I’ve spent learning to trust my own instincts as a mom (and the same goes for M). Nope. I will listen to them, of course. They’ll have insights I won’t have thought of. That’s kind of how I think about talking to anyone– people come at things from different angles. ANY person with a vested interest in my kids’ well-being who wants to have a respectful discussion with me is welcome, and I will always strive to include autistic adults in that group because there would be a huge hole in the conversation without them. But their thoughts will accent and not replace my decision-making as a parent.
I don’t want to sit at any table that removes a piece of anyone’s humanity and right to be frail, need support, or make some mistakes.
I don’t want to sit at any table that refuses to acknowledge that autistic people have value and gifts to share and have autonomy and have the right to communicate and make decisions and can enhance the lives of the people around them rather than just being some sort of energy drain on their pitiable families.
I don’t want to sit with people who think their perspective is the only one necessary in a conversation about autism. Not with the parents who forget to take their child’s perspective and can’t see past their own stress to try to understand why their child is “acting out;” not with the autistic self-advocates who don’t think parents should have a dog in the race. We get tired too, folks, we get burnt out and autism is hard for us to manage sometimes. It doesn’t mean we think our children are burdens. There is absolutely no rule in parenting ANY child that removes a parent’s right to complain, be frazzled, and feel overwhelmed– just like there is no rule that any child HAS to operate outside the scope of their abilities to make the act of parenting easier on their parents.
I don’t want to sit at any table that refuses to acknowledge that the parents of autistic kids (and siblings too) may struggle with the energy it DOES take to put yourself in the position of caring for, loving, and supporting a person whose neurology is so different from their own that it requires a full day of being “on” on someone else’s wavelength. Because that’s the thing here: autism doesn’t mean a person is hard to deal with. But the duality of an autistic child with a non-autistic parent means that the parent is living their whole life in autism land, which is not a place where their brain naturally lives. Imagine being underwater and following a fish around all day– a fish that does not pause to wait for you as you come up for air every ten seconds; a fish that likes to swim as deep as possible some days. I am a person who needs a lot of downtime and mental breaks, so it’s no surprise that a mere two hours home alone with my girls on a day where Chicken is trying to yank the dog’s tail and jumping on the couch while Ham rips pages out of books and eats them (yes, these are real things that happen) I just get wrung out. That doesn’t mean I don’t think my kids are amazing, bright little hilarious sunshine-y things (I would hope anyone who reads this blog and knows me already knows how much I love these kids). It means that they are human beings who do human things. It means I am a human, too, and frankly, it blows my mind when self-advocates get angry at any parent of an autistic child for saying “oh my sweet baby corn I am autismed-out today.” I mean, come on, raise your hand if you have zero memories of ever exasperating your parents in your lifetime. Right?
You know where I want to sit?
I want to sit with people who see my children as whole and valuable people– like how any child should be viewed.
I want to sit with people who value and respect the autonomy of people with disabilities– like all people deserve.
I want to sit with people who support me and understand me when I break down and admit to being so, so at the end of my rope, sometimes because my kids were maniacs that day, sometimes because I was just grumpy that day and didn’t have the energy for the level of shenanigans to which I am normally adjusted– like all parents need.
I want to sit with people who celebrate the little victories with me because they know little victories are often huge.
I want to sit with people who have a frame of reference for the experiences we share as “autism families” because sometimes it’s refreshing to not have to explain things.
I want to sit with people who have no frame of reference for our crazy therapied life but who want to learn more because I’m happy to talk about our life and our awesome kids.
I want to sit with people who will love my kids, even if from a distance and never up close.
So if you think that’s the table for you, too, then come on over. The chairs are all sticky but I snuck in some booze. *clinks glass*