Pah. I hate the whole autumnal clock change thing. In Autism Land, that just means our kid is awake when the sun rises, so now it’s 6 am or whatever, and he’s all ready for school, but the bus isn’t coming for another two and a half hours. Right now, he is asking every twenty-three seconds to go for swim class, and it won’t be time to leave for another two hours.
My therapist had a really great idea: I had told him about how young men in Thailand have to be monks for some period of time, and he postulated that, instead of military service, countries with conscripted armies should have young people do support services for families with developmental disabilities. (We didn’t try to imagine how that would work for the US because the tendency to rush to bootstrap ideology soils everything that official policy touches.)
We sat with this idea of support services and built a whole fantasy world, and it was so awesome that I didn’t even want to emerge back into this one. I think that reluctance says a lot about how precisely under-supported a whole lot of us autism families are, and how that is our norm every day.
In this fantasy, people would be changed permanently by their work with our families, rather than becoming nobly ableist. They would become adults who were consistent allies in the disability world. They would vote in infrastructure that wouldn’t desert us when administrations changed. They would open up every activity to our kids and make it inclusive. They would not get angry or fearful in the presence of autistic people. The presence of our kids in public would be a joyful given. They would plan for autism to be in every sphere of life. They would not redirect every initiative, conversation, and crisis to their neurotypical selves and concerns. They would not exhort us to use positive thinking or religion to anesthetize what should be a society-wide issue. And they would sit down instead of centering their own voices. Listen more. Act with more humility and respect.
Autism is an immoveable piece in the lives of families like mine. We adore our kids, and our lives are what they are. If you do not believe that we are already doing everything possible, availing ourselves of every potential resource, and not in need of character building advice or inspiration porn stories from you, and that we actually need YOU to change individually and collectively, shaped by input from US, then we are at an impasse.
That impasse is why we have little to offer socially. And to fill the silence, people tell us to listen to their uplifting advice which we have not sought. I have been told so often not to give up on communal engagement, but in all truth, I am there. I would much rather spend my beans on the people who engage consistently with my child, and within the peaceful, accepting embrace of my own household.
It isn’t enough, though. I am unwilling to delve more into what should happen from here, mostly because discussions that turn into gaslighting hurt my heart, so if that means I am talking inside an echo chamber, so be it. My spirit needs that nurturing sometimes. I fall back into the spaces that hold me. I’ll stay here as long as I need to.