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wandering and autismI never heard my cell phone buzz.

I’d turned off the ringer during a professional lunch. When I switched it back on, there was a voice message from the director of the program my son Mickey attends.

“Don’t worry, everything’s fine,” she said. “Mickey wasn’t really lost.”

What?

I called my husband Marc. “What’s going on?”

“It’s okay,” he reassured me. “We just had a little ‘adventure.’” (“Adventure” is code in our family for helping Mickey manage unexpected events such as power blackouts.)

Marc told me Mickey had called home and said, “Dad? I’m lost and all alone.”

He managed to ask calmly, “Where are you?”

“I don’t know.”

“Where did the van take you?”

“The mall.”

“And where is your group?”

“I don’t know.”

“What are you doing at the mall?”

“Having lunch.”

“Okay,” Marc said. “Are you near the food court?”

“Yeah.”

“Stay exactly where you are,” Marc said. “Don’t move. I’ll call them right now. The group will find you. Don’t go anywhere. I will call you back in two minutes.”

Mickey’s day habilitation program travels in the community every day. Marc reached the program coordinator in her office. Then he called Mickey’s cell phone. It rang six times, then went to voice mail. He tried two more times. Frustrated and frightened, he ran to his car. He’d only driven a few blocks when his cell buzzed.

“We’ve got him,” the counselor said. “We could see him the whole time. He just didn’t see us.”

“Why didn’t Mickey answer his phone?” I asked Marc.

“It was in his back pack. He didn’t hear it.”

“Better you got his call than I did,” I said, thinking, I might have panicked. Ok, I would definitely have panicked.

When Mickey was younger, he wandered. Or bolted. Even now, when he gets upset he’ll threaten, “I’m going to run away!” I remembered another food court. Another mall, Eighteen years ago. Mickey was 3, Jonathan 8. I sat at a table with them, and watched Marc head back to us with a tray. “Here comes Dad,” I said, turning to the boys.

Mickey was gone.

I shrieked.

“He went that way!” someone pointed. We ran. Heart-stopping moments later we found him standing with his face pressed to a glass wall, mesmerized by the motion of moving water in the fountain below.

Life is full of land mines, and I know we can never make the world completely safe for him. Still, we do our best. Mickey has carried a flip phone since he began high school. It’s primitive. No apps. No Internet. It’s simply a safety device, an electromagnetic umbilical cord. He likes to check in most days. “Hi, Mom! What are you doing? I’m at Subway. Can I bring you anything?”

Calls never last more than 90 seconds. He just needs to ping us. We have programmed his speed dial with family and neighbors’ phone numbers. Practiced calling and answering. Signed up for the Family Locator feature, which tracks his phone via GPS. He knows his phone and address. He carries an ID card with contact numbers, health insurance information, and a list of his medications. He is as prepared as he can be.

Yet sending him out still feels like a leap of faith.

“Don’t put your phone in your backpack,” Marc said. “Keep it in your pants pocket. That way you’ll hear it ringing and feel the vibration.”

“I was so scared,” Mickey said.

Me too, I thought. But if I wanted to bolster his confidence, I had to keep my own fears on a tight leash.

“I know you were scared,” I said. “But you stayed safe. You called us. You stayed where you were, and your group found you. You did all the right things. I’m proud of you.”

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Note: In the wake of the Avonte Oquendo tragedy, in which a 14-year-old nonverbal autistic boy ran out of his New York City school and was found dead months later, the Justice Department has agreed to fund free, voluntary electronic tracking devices for people with autism and other developmental disabilities at risk of wandering. All applications must go through law enforcement agencies. In addition, anyone who qualifies for Medicaid, Supplemental Security Income and/or other federal programs is eligible to apply to Lifeline Support, a U.S. federal program that makes cell phones affordable to people with disabilities.

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This article originally appeared in Autism After 16, a website dedicated to providing information and analysis of adult autism issues.

Wandering and Autism: Our Son’s Experience was last modified: by

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