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Why autistic children wander, and what to do about it

Cassandra Burgess-Alex keeps the house key on a lanyard around her neck. Her son Diallo, 10, is on the autistic spectrum and tends to wander from the home and she uses a key to lock the front door on Monday, November 7, 2016 in Sacramento. She has had to bolt the windows and doors because he has run away so many times, sometimes scooped up by neighbors and other times by the police,
Cassandra Burgess-Alex keeps the house key on a lanyard around her neck. Her son Diallo, 10, is on the autistic spectrum and tends to wander from the home and she uses a key to lock the front door on Monday, November 7, 2016 in Sacramento. She has had to bolt the windows and doors because he has run away so many times, sometimes scooped up by neighbors and other times by the police, pkitagaki@sacbee.com

Diallo Alex Jr., 10, loves the clanking sound a pen makes when he drums it against the kitchen table, or the dull thud of a spoon on his plastic cup. He especially enjoys the rattling noise that erupts when he attempts to open the screened back door, though his mother locked it months ago for his own safety.

Like many children on the autism spectrum, Diallo enjoys exploring the sounds and sights in his environment, and that can cause him to wander off at times. Called “runners” by parents in the autism community, these children have a persistent urge to move, be it away from a situation that makes them anxious or toward something that they want.

The problem keeps single mother Cassandra Burgess-Alex up at night, and it’s getting worse as Diallo grows up, she said. It started with jaunts around their quiet neighborhood near Calvine Road, where Diallo would get scooped up by concerned residents or sometimes by the police while trying to get to a park or a swimming pool. As the problem continued, she fitted the boy with an identification bracelet, added locks to the doors, and made sure he was supervised at all times.

Even with those precautions, Burgess-Alex worries about Diallo, who speaks only a few words and rarely forms comprehensible phrases.

“He doesn’t understand safety, at all,” Burgess-Alex said. “But he’s smart enough to know how to get out of the house. ... It’s a valid fear that I have, that no one can understand. And you live with this fear, constantly.”

With the growing prevalence of autism spectrum disorder, which now affects 1 in 68 children, parents and experts are seeking new ways to prevent children on the spectrum from running away such as home security features and new methods for teaching children about safety. Parents are also trying to find them quickly, which includes using iPhone tracking devices and police-issued electronic bracelets.

Nearly half of all children with autism spectrum disorder will wander off at least once after the age of four, according to recent research by national advocacy group Autism Speaks, and a quarter will be gone long enough to cause their parents concern. Many will put themselves at risk of drowning or getting hurt in a traffic accident, the study found. Children on the spectrum are three times as likely as their typically developing peers to wander.

While autism presents in different ways, many children on the spectrum can’t grasp the very concept of danger, said Dave Gaines, a behavioral analyst and director of the Sacramento Autistic Spectrum and Special Needs Alliance. Their heightened curiosity about certain places or activities may motivate them to wander, he said. and their atypical social development puts them at unique risk while they’re unsupervised.

“A typical child will naturally learn social behaviors,” Gaines said. “In an autistic child, the social part of the brain does not develop in the typical way. ... There isn’t a development of all the skills we take for granted - the fear of strangers, the idea that fire is hot, the idea that leaving the house is not safe.”

The tendency is nerve-wracking for parents, who often struggle to explain their child’s condition to neighbors and local law enforcement. Burgess-Alex said she has been chastised by local authorities including Child Protective Services for not keeping a close enough eye on her son. But even at her most vigilant, there are moments when Diallo can get away unseen, she said. Most recently this July, a neighbor spotted Diallo on a ledge outside his second floor bedroom window, which is now bolted shut.

When he was younger she used a leash, but he’s grown out of it, she said, so she holds his hand or elbow whenever possible. The family has stopped their much-loved camping trips to Folsom Lake out of fear that Diallo, who is fascinated by water, will wander in. Cassandra has put Diallo through swimming lessons but he hasn’t picked up the skill, she said.

“He’s like a ninja,” Burgess-Alex said. “There are just random moments, when I’m loading all the kids in the car in the morning, or putting groceries in the car. If he wants to run, it’s almost impossible to stop him.”

Autism Speaks offers a long list of wandering prevention resources, including books, phone apps and harnesses. Parents and experts have additional tips for keeping autistic children close.

Teach

To stop children from wandering, parents must first determine what a child is wandering to, Gaines said.

A child who is wandering to get attention, for example, may be taught to seek attention another way. If a child is wandering to get to something specific, such as a red slide, a parent may be able install a red slide in the backyard or mimic the sensation of going down the slide by blowing the child with a fan in the house.

“A lot of kids on the spectrum get very fixated, persistent,” Gaines said. “If the issue is that the child is impulsively wanting to go to that place, the skill the child is missing is a waiting skill. It involves a program of teaching the child to wait and rewarding waiting. The child learns that I’ll get what I want, but it’s even better if I wait.”`

Track

The digital age has brought new innovations for families coping with autism, including 24/7 monitoring.

Lisa Brown, a Fresno mother who works for New Jersey-based tracking app AngelSense, said she first found the company while researching wandering prevention for her twin boys Daniel and Anthony, both of whom are autistic. Now 9, the twins have had a strong compulsion to wander since just after their fourth birthdays, she said.

AngelSense provides parents a locked GPS device to attach to the child, which communicates with the phone app to give parents regular location updates. A special tool called “runner mode” sends an updated map location every 10 seconds, and a “listen” mode allows parents to hear audio through the device.

Earlier this month Brown received a notification from the app that David and Anthony had exited the school building long after their daily recess hour. She immediately called the school and was relieved to find out that recess had been delayed that day and the boys were still with their assigned aide.

“If I hear a ding out of sequence, I’m on the app looking at where they’re at, what they’re doing.,” Brown said. “I’ve found that over the years I don’t look at it as often as I did in the beginning. ... It’s really nice. You can breathe a lot easier.”

Some local police departments use a device-based program called Project Lifesaver for children with autism and adults with dementia, who also tend to wander. Enrollees in the program get a wristlet or anklet, which sends out frequencies that the department can pick up to help them find lost people faster.

Tether

When autistic children are small, a leash or harness can be a good way to keep them safe, but as they get older experts may recommend another step such as a service dog.

Elise Lalor, co-owner of Monkey Tail Ranch in Hollister and trainer of autism service dogs, said the dogs can help parents prevent certain autistic behaviors such as wandering. If a child is anxious in a particular setting and wants to bolt, the dog may be able to instead lead the child to a quieter place. The dog might also lay down with the child or provide comfort by placing its weight on the child’s chest until the child calms down.

“The dog and the child tend to bond rather quickly, especially for children who are nonverbal,” Lalor said. “Dogs are nonverbal, and they tend to form a common language. The bond between the two is something you can’t quantify - it’s magic.”

Sammy Caiola: 916-321-1636, @SammyCaiola

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