No matter how many communities of both choice or chance I find myself a part of, I always seem also to find myself standing apart in my own little corner within them. It was true for my fandom communities of choice and it’s been true for my chance community of autistics.
There’s little question that the way Autism Speaks talks about the Kübler-Ross stages of grief (see page 14) when it comes to parents of children diagnosed as autistic is hellishly problematic, because it doesn’t distinguish between emotional reactions that are natural and those that are the result of a lifetime of social programming.
Grief over a friend or a relative or a family pet having died is natural. Grief over a newborn not living up to the way in which society says their brains should have been wired is a learned grief. Autism Speaks treats the latter as if it instead is the former.
Much of the actually autistic community, however, seems to think that the latter isn’t understandable or relatable despite that lifetime of social programming, but there’s a way to talk to, or about, parents of autistic children that neither condescends nor displays that lack of empathy neurotypicals wrongly but all too frequently ascribe to us. We all know and feel what society has taught us to know and feel, until and unless some internal or external force acts upon that inertia.
Confounded expectations for one’s life, when those expectations so often are informed or even dictated by the people and groups around us, these can cause grief that feels just as legitimate as natural grief. It’s certainly still real grief, even if unnatural.
This should be part of the conversation too, even as we agree with the decision of the Autistic Self Advocacy Network to end its partnership with Sesame Street. The problematic way in which Autism Speaks treats the parents of newly-diagnosed autistic children isn’t an excuse for actually autistic people to treat those same parents in a problematic manner of our own.