Ali Family Autism Truths # 3 – Spinning in Circles

April 3, 2015 – Autism Awareness Month, Day Three of Ali Family Autism Truths

“A” came with me today when I went to pick up D from school. She and her little brother, H, had half-days, as Spring Break has now begun. With H off to Jummah prayers with his grandparents, A kept me company on my afternoon drive. The other kids rarely come with me when I get D. They’re both coming home on busses at that time themselves. So it was a little disconcerting to A to see her older bro pulling his arms into his shirt and making distressing cries on the ride home.

Why is he upset? She asked me. I thought he’d be happy to be going home.

Why, indeed. I spend a lot of time trying to figure out the why’s. I’m not always that astute, though.

Back at home, D sat down to a post-school second lunch of chicken biryani that his grandparents brought for him. Before he began eating, I instructed him to put his arms back into his sleeves. He did so. Then, a few seconds later, he met my gaze and sheepishly removed a plastic dinosaur, a toy car track part and two crumpled up paper towels from his sleeve. The pillow stuffed up his shirt, making him look like a linebacker, came out as well and was handed over to me. Then he tackled the biryani with a gusto.

My mom-in-law laughed.  Yai kya kera? Phirsai yai poorani addat? (What are you doing? Again this old habit?)

Sometimes we laugh, or sometimes I laugh, because it’s all I can do to keep from crying.

We call it stuffing — when D stuffs up blankets or pillows up his shirt, or stuffs numerous small objects up his sleeves. Or, the trifecta — pulls his arms in his shirt, pillow stuffed up the front and his hoodie over his head. I’ve written about this before. All these behaviors are not “just autism,” but rather a way of him showing us something: He is anxious. He is off. He is unwell. Sometimes, well, I don’t know what it means. but it means something.

D was stuffing like this nonstop two summers ago, and it lasted months. At school we tracked data on it, analyzed the data, looked for antecedents to the behaviors, tried a myriad of sensory interventions (tight Under Armor shirts, sweatbands around his arms, weighted vests — you name it, we tried it.) I also looked for medical answers. Is he sick? Does he have an infection? Is there something new in his environment that is making him anxious? Are allergies flaring? What. Is. It?

Eventually, months later, the stuffing subsided. We would whisper to each other – look! Arms in his shirt! Wearing his shirt properly! He looks relaxed! God, I felt so happy for him.

The stuffing is back. It’s getting worse, and worse and worse.

Yeah, it’s not the worse thing D has gone through or subjected himself to, by far. But it worries me. Because I’m afraid of where this road may lead. I’m frustrated he’s back here again. I know the mantras – presume competence; there is no timeline on progress. But oh God how I wish this circuitous route would unwind into a more straight-ish path. I can handle the curves and detours. But the endless circles …

I wish I could figure out the why’s of why he does what he does. As far as we’ve come in our drive to hear him and understand him in all his nonverbal glory, there is an unbearable amount of unknown.