I’ve had a fresh dose of family this week trying to convince my husband and I that my daughter is not on the spectrum. I’m trying to take this in peace instead of getting angry. I’m not happy with the idea that saying my daughter is “normal normal normal” is a compliment, not when it invalidates my experience, not when it feels this need to hammer it in over and over. So still at midnight I lie in bed composing angry emails between nursing the baby, mostly along the lines of “if you don’t want to learn about this than F*$& off.” The infuriating thing is that they want me to do something different to “fix” the things I see as autism–usually some discipline-based practice like screentime limits or ABA.
The sad thing is they don’t know her as well as they could. They don’t know that when she screams “stop talking!” it’s an achievement in self care. She’s learned that silence will allow her to recover from a meltdown and she can communicate that without hitting. They don’t know how she laughs and laughs at the same jokes day after day, her particular thrill in the fact that something “wrong”–in the sense of incorrect, something that can trigger a meltdown for her–can be funny and forge a connection. They don’t know that her nearly non-verbal friend on the spectrum has much better social awareness than her, that he notices when her imagination takes her far away and tries to draw her back in to play. And they don’t know the amazement and joy I feel after her birthday party because three kids with autism and eight without all had fun together.
Autism is a huge chunk of our world and the insistence on invalidating it simply puts up a wall.
Luckily in the last few weeks I’ve also found unexpected avenues of support. The facebook group Unschooling Special Needs has been a haven where this double isolation of autism and unschooling turns into community. People reject the line seen too often on unschooling forums that labeling hurts your kid and high-functioning autism is just a sign you’re not unschooling right. Instead, everyone offers support: giving radical unschooling advice while also acknowledging that some kids will have needs far beyond our expectations, needs that use all of their parents’ energy.
Then a close friend recently told me she’s going to alcoholics anonymous. She explained how huge and unexpected that support network has been, but how some family members tell her she’s not an alcoholic because she doesn’t fit their idea of what an alcoholic looks like. What can you do in this situation? List off all the times you’ve blacked out? And what do I do with people to not only don’t believe me, but push for me to believe my daughter isn’t on the spectrum? Describe how the day before she sat on my lap panicking about the wind and stimming? Why would I do that when that story is not all of her, not all of autism. It’s also the jokes and the joy and the thrill of figuring out this world.