APRIL IS AUTISM AWARENESS MONTH.
Yeah, this post’s title is a military term. Rules of engagement tell you when you’re allowed to shoot back.
Sometimes care giving feels like combat, albeit in non-lethal form.
One particular battle is the effort to engage people with autism in collaborative behavior. I was going to say meaningful behavior but that assumes that people with autism are absorbed in meaningless behavior on their own, which is not true. Their behavior has great meaning to them, even if we can’t always crack the code and understand it. And who knows, maybe they perceive our antics as meaningless.
OK, back to collaborative.
Our 25 year old son with autism, Joey, lives in a warm and supportive group home here in town. Our custom is to pick him up on Sunday afternoons for dinner and an overnight with us.
We try to engage him in play, household activities or just chit chat. None of these have ever been among his favorite things. And as we shared a few weeks ago, his priority right now is to negotiate and nag about an unavailable form of entertainment he used to enjoy on his own.
So there’s some creative combat as we try to get him to say or do anything besides chanting “VCR will be here soon.”
Music usually engages him, but he’s figured out that playing tunes on our computers or phones is our effort to stifle the VCR negotiation. So he either covers his ears and stomps away, whines “No MUSIC” or, wonder of wonders, forms a sentence to say, “I want quiet, please.” Which is collaborative communication, except it leaves us all staring at one another non-collaboratively.
So I ran and got some picture books from our years of accumulated kids’ books. We got a few smiles out of him with our funny character voices, but he would not sit on the couch with us to look at them, let alone read with us.
So Melissa continued to try an engage him in talk or music while I huffed away to empty the dishwasher (does he think I’m engaged in meaningful behavior when I do that? Do I?)
Then a little light bulb fizzed on over my head. I said, “Hey Joe, come in here with dad.”
He glowered at me.
“Come on and help dad,” I chirped. “This will be FUN!”
He uncurled from the couch and stood looking at me. I indicated the silverware drawer.
“Help dad put these away.”
I handed him a butter knife. Lo and behold, he put it in the slot with the other knives.
“Good job with the knives,” I oversold the moment. Then I gave him a salad fork.
He put it in with the other smaller forks. That was impressive, as he could have just mixed it up with the larger dinner forks.
I commenced praising him and called out my delight to Melissa. I was going to move on to spoons, but he made an annoyed face, sounded off with his go-to word, “NOOOO,” and returned to the couch.
We counted the night a success. Caring for people with autism requires rejoicing in small victories, connections that might seem trivial in what we perceive as normal life.
We’re still refusing to chase after another VCR. But we are adopting a puppy. And we’re provisionally excited, because Joey made eye contact and whispered “Yes” when we told him about it and Melissa showed him pictures like this one:
This little guy is named Henry. We hope he will help us with some fun engagement with Joey. That is, once Henry’s done eating Melissa’s glasses.
So, what forms of engagement reach the one(s) in your care? Always open to new tactics. What works with one person with autism doesn’t necessarily reach the next one.
Very often, the most loving care is to keep showing up, trying again or trying something new.
And sometimes just showing up and letting them be.
Are you a family caregiver or know someone who is? Consider getting or gifting our little book for this Autism Awareness Month.