Down, not Out: Helping Your Autistic People Back Up

My youngest daughter, Zo, just turned two. Coming from a household with talkative parents and a loquacious older sister, she’s been quick to getting the hang of sentences.

One of them is my new favorite:

“I love you, dada.”

The greater surprise isn’t that she says it. It’s when. She knows and senses exactly when I need to hear it. She just blurts it outright, often with a little toddler hug. I never ask.

We autistic people can’t just “ask for help.” We’ve long since learned that nature punishes the weak, and we don’t elicit the kind of natural empathetic response from others because we’re different. 

But being creatures of machine and routine, we’re often more down than out. Though we’ll rarely ask for it, here’s how to help us up:

Be kind in response. We don’t choose to be down. We’re autistic, not emotionally masochistic. If we had a say in the degree to which things affected us or torpedoed our mood, we would avoid that, just like you.

Be patient. We’re routine driven, and bizarrely, most things clear up once we can bounce into routine. Personally, I have more bad days and very very few bad weeks. That’s not the case for all of us. There are events, times, and seasons – there are no quick fixes.

Take the straw off our back. Disappointment, depression, drawdowns: they are an additional cognitive and emotional burden. You probably can’t fix it. But you can fix other things. It won’t be quick, but it lightens the load on the road recovery. Shoot, even having my sink cleared and the table set for dinner — people doing things for me that I’d normally do — is a help while I cope.

Give space to engage and disengage. We are going to process negative emotion deeply and differently each time. Sometimes I just need to vacate my mind and not choose the words; I appreciate knowing that I am supported in disengaging. Sometimes I need to engage and untangle that ball of dour yarn. Choice is powerful in coping.

Don’t expect fixes; do accelerate healing. Some of the things that help me the most in a funk are meaningful adjustments to routine: walks to the park, dining out, low-effort little joys. But not if I have to be happy during the event or afterward. It’s like setting a bone: the break isn’t healed, but it’s in a place to heal. It will happen.

For my neurotypical audience: invisible differences, disabilities, and afflictions are hard enough on their own, and it’s hard for you to support us through them. I get that.

It might not “make sense” for us to go from incandescent one day to intractably dolorous the next. Or even hour to hour.

It’s like having a giant, decaying log of poison wood tied upon your back, sometimes suddenly: it’s heavy, and it’s toxic. While it might rot down eventually, it is dank and overbearing right this minute. 

Sometimes we need you to bear the weight for a second. Or to bear it with us. Or to tell us to hang on and stay strong while you handle the things we can’t at the moment. Or to help us find a place to set it down while we rest. Or to acknowledge that this going to be awful for a while, but that we can do other things, despite the log. Or just mention that it looks bad, and heavy, but that you’re there, and you see how much it is to carry.

Or to share a taco or two. Tacos make everything better.