Editor’s note: For those who have a loved one with Autism Spectrum Disorder, a community of support can be a lifeline. For more than 40 years, ASNC Chapters and Support Groups have provided families who face similar challenges an opportunity to encourage one another, share experiences, find information and resources, and have a place where they feel welcomed and understood. These volunteer-led groups also offer education to families, increase autism awareness and understanding, and support and extend ASNC’s mission in their local communities.
Throughout this year, we are highlighting the ways each of our Chapters and Support Groups makes a difference. To find one near you, please click here or contact Marty Kellogg, ASNC State Chapter Coordinator, at 919-865-5088 or mkellogg@autismsociety-nc.org.
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Children with autism are more likely to run from caregivers than other children; so much so that the problem has been given many names: wandering, elopement, bolting. They might have phobias or sensitivities that make them likely to run away in certain situations. Once they have escaped supervision, their fascinations can prove deadly, drawing them to water, trains, or traffic.
In Durham, the local chapter of the Autism Society of North Carolina (ASNC) took action to keep individuals on the spectrum safer by working to bring Project Lifesaver to the county. The program provides equipment and training so local first responders can quickly locate missing, at-risk individuals, such as those with autism or Alzheimer’s disease. Individuals wear transmitters that emit a signal that can be picked up by equipment at the rescue office.
Susanne Harris, who was a chapter leader and is now on the ASNC Board of Directors, knows from personal experience how important a program like Project Lifesaver can be. Her son Matthew, who has autism, has always been a “runner,” she said. “You got a gold star as a teacher if you didn’t lose him at some point.”
When Matthew was 15, he went missing from a Myrtle Beach cottage where Harris was vacationing with her parents. “I turned my back for just a few seconds to put a pillowcase on, and my child was gone,” she said.
Matthew, who has good receptive communication skills but not expressive skills, was missing for more than two hours. During that time, dozens of people joined his family in searching the area. They looked in nearby pools; he loves to swim and is quite good at it, thankfully. They combed the beach, where darkness was beginning to descend. They looked through the rides at a nearby pier. The police, sheriff’s office, and fire departments joined the search. They even brought in two helicopters.
Meanwhile, Harris was thinking, “I am the worst mother in the world.”
Matthew was eventually found safe in a nearby pool, but Harris believes they could have skipped a lot of the ordeal – and the expense – if he had been wearing a Project Lifesaver transmitter. When she called 911, it was the first thing the responder asked: “What is his Project Lifesaver number?”
“If we had had the Project Lifesaver piece, we would have found him in 15 minutes,” Harris said. She brought the idea to the Durham Chapter of ASNC. (Matthew, now 21, is enrolled in Project Lifesaver in Carrboro, where he lives in a group home.)
To establish the Project Lifesaver program in Durham County, chapter members had to raise about $4,500. They held restaurant fundraisers, solicited donations, and sought sponsors so they could purchase the best equipment with the widest range. They also had to gain the backing of the Durham County sheriff’s office, because the deputies would be the ones to receive the training.
“Our sheriffs have really gone above and beyond,” said Tiffane Land, a past leader of the chapter who also spearheaded the Project Lifesaver efforts. Land said the sheriff’s office created a task force of those who are trained to participate in the program, and they perform practice runs. They also meet with families who are participating – about five right now – so they get to know the individuals they might be searching for later, building a rapport.
This year, Land said, the ASNC chapter will continue to raise money for the Project Lifesaver program in Durham, because it costs hundreds of dollars a year per participant. In Durham, families are enrolled at no cost to them. The individual must have a history of wandering, and the family must commit to keeping a log that shows they have checked the device twice a day and changed the battery once a month.
Shelagh Kenney, the current leader of the Durham Chapter, said that the chapter also has an active Google group that members use to share information and resources. She hopes to bring in more families to take an active role in the chapter, to be there for all families, from those with new diagnoses to those facing the transition to adulthood. “I really would like to do more to help those families feel that they have a community,” said Kenney, mom to a 6-year-old on the spectrum.
For more information
- Durham County Chapter of ASNC website: http://www.durham-autism.org/
- Contact: Terri Meyers, ASNC regional chapter support, at tmeyers@autismsociety-nc.org or 919-743-0204
- The chapter’s next meeting will feature a Q&A with one of ASNC’s Autism Resource Specialists from 6:30-8 p.m. Tuesday, March 25, at Watts Street Baptist Church, 800 Watts St., Durham.
- Project Lifesaver: Learn more about the program and where it is available on the website: http://www.projectlifesaver.org/
- Safe in the Community: For more information about how to keep your loved one safe in the community, please see the safety section of our website, which includes tips, resources, printable forms, and free “Person with Autism” decals.