inviting joy back into the conversation

It never fails– I open my computer and there is another story about an autistic child harmed, or killed, at his or her mother’s hands.

There is a big conversation that needs to happen around this. Huge.

Yes, part of the conversation is about family and mental health support, of course… but it’s really about the rest of us.

Why?

We as a society are talking about autism. And we have a lot to say about it. Almost always negative things.

Yes, autism comes with challenges. Big ones, sometimes huge ones.

It can come with co-morbid diagnoses: seizure disorders, sleep disorders, anxiety disorders, OCD, rage, sensory overload.

It can be very, VERY hard on parents. I’m not going to shy away from saying that. When you have two people with vastly different neurologies who are trying, all day every day, to understand each other and love each other and just functionally coexist, you are both going to be exhausted a lot of the time. (See also: all the stuff I listed above. Raising a child with those conditions is also hard.) This is not the child’s fault, it just is what it is, but BECAUSE it is, we need to acknowledge it.

But autism is not all fear and sadness and it is not a death sentence.

People who do not speak can still communicate.

People who do not make eye contact are still listening– and hearing when you think they’re not listening.

People who move their bodies in different ways are not always expressing an emotion that most closely matches how we are feeling when we move our bodies in that way. (Flapping and fidgeting does not always mean nervous!)

People who use their voices in different ways are not always expressing an emotion that most closely matches how we are feeling when we use our voices in that way. (Yelling does not always mean distress!)

Autism is people, and people are a lot of things. People contain fear and sadness and anger and frustration, and they also contain joy and love.

If we only talk about the scary parts, it’s going to be that much easier for parents who, for whatever reason (because really, it’s hard to process the reasons but whatever they are, they exist) are vaulting themselves straight over the line of acceptable parenting decisions, past survival mode, and into unthinkable territory– and a lot of it has to do with the pervasive culture of  abject hopelessness surrounding the autism world when too many people are somberly looking in from the outside and reporting on their fears. We lock joy out of the conversation and it needs to be invited back in.

Since I’m pretty damn tired of having my brain stuck on trying to process how a mother can throw her son off a bridge and I just don’t want to do it right now, I’m going to present this video of Hammy instead. She discovered a piece of furniture with a mirror backing that is exactly the right size for her to see her whole body when she bends forward a bit, and she loves it.

So if you’re also tired of picturing a small child thrown off a bridge by his mother tonight, I invite you to come instead watch two minutes of Ham being fully Ham. She’s delightful, I think you’ll agree, and I wouldn’t want her any other way. (And of course the same goes for her sister, who is, in this video, watching Super Why in the kitchen with her Nana.)

the autism lunch tables

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*