CARY, N.C. – When seven-year old Connor wandered away from his day care a few years ago, a concerned passer-by noticed him and took him to a nearby school, which reconnected him with family.
That happy ending is all too rare for children with autism, says Connor’s mom, Lori McIlwain, co-founder of the National Autism Association.
Children with cognitive disabilities who wander off are not covered by the Amber Alert system, which triggers a nationwide search only when a child is abducted, she says.
And most people don’t realize that, since last year, North Carolina’s Silver Alert system, which is triggered when someone with a cognitive disability wanders away, can be used for children in addition to seniors.
Until that gap in service is filled, McIlwain worries more children will die.
So last year, National Autism Association started the Found program, which provides funding for sheriff’s departments to purchase equipment to track down missing children within minutes.
Using such Project Lifesaver equipment, which the Wake County sheriff’s office already had, Connor was fitted with a bracelet that emits a signal authorities can pick up should he wander off again.
With about $7,000 in funding from the association, a sheriff’s department can purchase the tracking equipment and five bracelets, which emit a signal, for children whose families otherwise couldn’t afford them.
The association started the Found program with $60,000 raised by Phyllis Cahoon, whose daughter is president of the association and whose grandchild has autism.
So far, the association has provided funding for about 12 sets of equipment.
“If one child goes missing, that’s enough for me to contact the sheriff’s department and ask if they can buy one,” says McIlwain. “If they don’t have enough money to buy it, that’s enough for me to find a way to do it.”
In North Carolina, she has funded Project Lifesaver equipment for Orange County, which is home to a large number of autistic children because of a major research and treatment center located in Chapel Hill.
She currently is trying to find funding for grants to sheriff’s departments in Moore and Johnston counties.
In addition to saving lives, the equipment can save money, McIlwain says.
The sheriff’s department in Summit County, Utah, for example, spent about $40,000 on search-and-rescue efforts for an autistic 20-year old who repeatedly wandered off. They now have Project Lifesaver, thanks to McIlwain and the association.
“In addition to the main goal of saving a life, that will spare them the cost of search and rescue,” she says.
The National Autism Association, which has an annual budget of about $500,000, gets most of its funding from donations, supplemented by a few grants and corporate sponsorships, as well as revenue from an online store that sells autism-awareness items and therapy tools.
And the organization recently tapped its Facebook group, numbering close to one million members, for donations.
She’s also coming at the problem from a public-policy angle, but to date has not been able to get an audience with North Carolina’s senators, Kay Hagan and Richard Burr.
“Lawmakers think Amber Alert covers minors,” she says. “They don’t know.”
But she will continue to try, because the mission of the National Autism Association is to advocate for children’s rights and for meaningful research, and to provide assistance to families.
“It’s constantly asking the question, ‘Who is doing something about this,'” McIlwain says. “And if no one is, then it has to be us.”