Raising Jac: The young face of a growing crisis

When her son Jac was diagnosed with autism, Shannon Carper searched the internet for anything written by other moms with children on the spectrum. She found great comfort learning how they navigated the life-changing diagnosis and began a Facebook page to share her own young family's challenges and joys of "Raising Jac."

Two years later when he was 4, Jac became part of a devastating statistic: one of a record number of children with autism attracted to water who wandered, or bolted, from safe environments and drowned. In all, 82 children died last year – in lakes, ponds, pools and drainage ditches.

Here at the National Center for Missing & Exploited Children (NCMEC), we provide special search protocols for first responders when children with autism wander, offer emotional support to families and will be releasing a new training module for law enforcement in the coming months.

But John Bischoff, who oversees our Missing Children Division, says wandering incidents happen so fast that it’s going to take more involvement from the public. If neighbors band together and are aware of children on the spectrum in their communities, they could get to these children before first responders and save lives, Bischoff said. About half of children with autism will wander.

The National Autism Association (NAA) says this year’s fatalities are on pace with last year’s record, averaging seven wandering deaths a month, nearly all from drowning. NAA has no clear answer for the increase.

“One is a tragedy; seven is a crisis,” said Lori McIlwain, co-founder of NAA who tracks wandering cases. “This can’t continue.”

Charlotte was very protective of her little brother Jac.

Carper, 30, an elementary school teacher who lives in Altoona, Pennsylvania with her young family and mother, decided to share her middle child’s painful story with NCMEC to help other families learn from her tragedy. Every child with autism is different, and Jac had never wandered before, she said.

Although he was non-verbal, Joseph Alan Carper II (Jac comes from his initials) communicated with hugs and giggles. When he was upset or frustrated, however, he would bang his head, prompting his parents to pad his bedroom floors and walls so if he woke up at night he wouldn’t get hurt. They put special locks on their doors.

More than anything, his mom said, Jac loved water, a soothing balm from the sensory overload of his daily life.  At a “Mommy and Me” swim class, it was difficult to keep his face out of the water; he wanted to be completely submerged, Carper said. “One time he climbed into the toilet just to sit in there,” she said. 

Jac loved water, a soothing balm from the sensory overload of his daily life.

But, thankfully, Jac hadn’t exhibited any signs of the repeated wandering behavior often seen in children with autism who are drawn to water. Not, that is, until Aug. 12, 2024.

That evening the lure of water proved to be too strong for Jac, and it happened in an instant. His grandmother was watching Jac and his two young sisters, all while juggling baths, laundry and iPads. Snuggled in the covers on her bed while she checked on his sisters, Jac somehow figured out the special door lock and slipped out of the house undetected.

Jac made a beeline for the neighbor’s pool, where he was found floating in the water at 8:54 p.m. He was last seen at his house at 8:30 p.m., the timestamp when his grandmother snapped his photo.

Coping with the loss of Jac has been a struggle for his entire family, Carper said. Through her emotional posts and photos on her Raising Jac page, she documents life with and without him.

Carper hopes that by sharing Jac’s story, he will live on, as she wrote in one post:

You were never just a “child with autism.”

You were you.

A beautiful, radiant soul with your own language, rhythm, and logic.

You taught me more in four years than I could have learned in a lifetime…

To learn more about autism and wandering, go to https://ncmec.org/theissues/autism.