“A Call to Action”

I don’t really know what I want to write about this week. I have been having lots of encounters and experiences that remind me how non-mainstream the lived experience of autism families can be. This is very much at odds with how commonly people say Oh, autism is everywhere now.

Yes it is. But the manifestations of it are very varied, and the feeling of being the square pegs never really goes away.

Also, the daily life is just…a lot. There isn’t any way to normalize it in chatty conversations that won’t sound like a boulder smacking into a well.

And of course we fear being called out for sounding less than upbeat. A lot of energy goes into protecting our own spirits so that we can honor our authentic emotions, and save our beans for autism parenting.

Plus we want to be there for our families and friends. We do not ever want to miss the happenings in the lives of precious people whom we cherish deeply.

Today I met a woman who was talking about how hard it is to form authentic ties with people as we get older, how meaningful it is to find people with whom we can discuss more than the weather. I found myself thinking that the old me would have agreed with her without hesitation, but the autism mom me is often too weary to jump in. This is the toll that endless caregiving takes. We gain a lot, but we lose pieces of ourselves in ways which we are usually too battle worn to analyze.

How much of that is because of how much we exist outside the mainstream, and are not well accommodated by a society that is reluctant to educate itself about inclusion? I am willing to say it with more emphasis these days—a heck of a lot. Pathologizing our own responses is only one piece in this thing.

A wonderfully folksy Swamiji I spoke to last week said, “We have to be willing to be made a bit uncomfortable so that families like yours can belong in the community.” That right there, that gives me hope. If someone as cloaked in tradition as he can say that, what is everyone else hanging back for?

I would like to ask you, beloved reader, to think about what concrete action you might be able to pursue so that special needs families can be more included in your world. If you feel so inclined, feel free to share. I think it’s time to hear from you.

Radha.