Explaining Autism to a Younger Brother

ExplainingAutismToBrotherThis column was originally published as part of my “Tuesdays with Madison” series at AutismAfter16.com.

I couldn’t take a bite of my salad—he wouldn’t let me.

“So, why does Madison go to school on the weekends, Aunt Becky?” my nine-year-old friend asked during a recent lunch outing.

“Oh, that’s not her school, Zander. It’s her camp,” I explained resting my fork on the side of my plate. Earlier that week, Madison had come home for a brief visit and birthday celebration—red velvet ice cream cake and tons of cheese pizza—before she went to her weekend respite camp.

“She attends school during the week, just like you. But, her school is about an hour away,” I continued. “Remember when we went there last year to take her back?”

“Oh yes, I remember.”

What he couldn’t remember, because we didn’t tell him, was that it was an emergency trip back to the school. Her visit home had to be cut short because of some aggressive alarming behaviors. His mom drove us back to Madison’s residential placement.

“We took her to her home there, remember?” Zander nodded and I continued to explain. “She lives with several other girls and they attend a special school together.” I paused to pick up my fork.

“But, Aunt Becky, how is it special?”

“Well, Madison has a teacher, a teacher’s assistant, and a one-on-one helper to keep Madison focused,” I said, putting my fork down again. I could see the “why” question forming in those deep brown eyes so I kept going.

“Remember how Madison popped up from the table to get a video from the basement during her birthday party?” Zander nodded.

“And then ran upstairs to find her Barney toy?” He nodded again.

“And then grabbed Pat’s pizza when she wasn’t looking and ate it?” Zander giggled at the last one, recalling her antics.

“Those classroom helpers keep her focused so she can learn,” I said, raising my fork once more for a bite.

“But, what does she learn, Aunt Becky?”

This time I put my fork down on the table, pushed my salad away, and grabbed another set of silverware.

“She is learning things like this,” I said as I unrolled more silverware and separated the pieces.

“She can look at all of these pieces of silverware and if her teacher says, ‘Put with same,’ pointing at the spoon, Madison knows how to put all the spoons together. In fact, it’s one of her jobs in her home there—sorting silverware.”

“Oh, I see,” said Zander.

“But the weekend camps she attends are for fun—a kind of vacation foe Madison. She gets to see her camp counselors that know her, old friends, and the chance to make new ones.”

By that time Zander had finished his cheeseburger and a few of his fries. Finally, I dug into my salad.

As I watched him nibble on the rest of his fries, I wondered how long he’d had these questions. It must be an odd feeling to have an older sibling who was so much younger in so many ways. During her birthday party the previous week, I had prompted her to speak with the scripted conversation she had learned many years ago.

Zander was fascinated.

“What’s your mommy’s name?” I asked. “Becky,” she replied.

“What’s your daddy’s name? “ “Joe.”

“What’s your sister’s name?” “Brittany.”

“What’s your brother’s name?” “PETER!” she shouted. She would always shout. We could never figure out what it was about Pete’s name that caused her to shout it, but she did, and does, every time.

After her spontaneous trip to the basement to grab a video, she came back to the pizza table and settled down.

“Zander, look what else Madison knows. Madison, look at me,” I began.

“When is your birthday?”

“March 24th” she boomed back.

Zander smiled.

“How old are you?”

“I’m 19 years old,” she said, flashing that impish smile of hers.

Zander’s eyes widened. I explained to him that it will take a few weeks for her to learn to say that she is 20 years old. Once she got stuck at 10 years old and said it straight through until she was twelve, I told him.

I wondered how long it will take her to learn 20.

But that day, she was on a roll —happy, engaged, and hitting all the right answers. So I continued.

“How are you?” I asked. “I’m fine,” she fired back.

“What’s up?” “Not much.”

And then my personal favorite, “How’s life, Madison?”

“Not bad,” she replied, giving me one of her trademark side glances.

And we all laughed. Yes, life was not bad, at least that day.

On a good day, most of Madison’s visits home are filled with giggles, smiles, and scripted phrases as she dances to the music in her head and darts from room to room in search of videos and her Barney. When she’s ready to go, she opens my gift bag drawer, pulls out a bag, and says, “Help me, please,” so she can open it for the prized videos she has collected for the return trip.

On a not-so-good day, words escape her and she resorts to tantrums, tears, and self-injurious behaviors. Emergency trips back are rare, but always anticipated.

No wonder Zander had so many meal-stopping, mind-poking questions. At least that day I had explanations for most of them.

There is so much, however, that simply can’t be explained.