Introduction and Overview
Today’s presentation was developed after a tragic incident occurred in southern Oklahoma. A little boy with autism wandered out of his home late one night. After searching the area, they were unable to find him. Sadly, he was found two weeks later, a victim of drowning. After that incident, several of us in the community collaborated and organized a free training, with the goal of educating people about autism and safety. We all felt like we needed to do something to help our communities understand autism; to provide families tips on what to do, and techniques on how to respond to children with autism. In a similar effort, many of the main national organizations on autism collaborated to compile information on autism. In the handouts that are included with this course, there are several different forms that you can share with schools and families, to help them put a plan in place, so that if something happens, they have all the information they need at their fingertips.
Why is This Important?
Roughly half of children with autism attempt to elope from a safe environment. That is a staggeringly large percentage. It seems like every week or so, there is a news story about children who have wandered off; many times, they find these children have drowned. More than one-third of children with autism who elope are unable to communicate their name, address or phone number. Half of these children are getting out and more than a third of them can't even identify who they are or where they live. As therapists and providers for children with autism, it is critical for us to think about the safety skills that we need to teach both children and caregivers.
Wandering ranked among the most stressful autism behaviors by over 58% of parents. Many children with autism, although they may be non-verbal, are extremely savvy and resourceful. If they see something they want, or have something in their mind that they want to do, they will figure out a way to do it. For example, in the Oklahoma incident, that boy was able to put a beanbag chair up to his front door, and was able to open the door just enough that the alarm would not sound.
Furthermore, 40% of parents suffer sleep disruption due to fear of elopement. I was at a school recently, and there was a woman who had twin boys, both with autism. She stated that at some point, they both have managed to escape out the front door. Understandably, she has a hard time sleeping at night, worrying about if they are going to get out and what she needs to do.
Surprisingly, half of families reported that they had never been provided any guidance on elopement from a professional. This is probably the hardest number to swallow – that professionals are not informing families about safety, myself included. Prior to the Oklahoma incident, I would address safety issues if the parent asked me about it; but I never initiated the topic or asked parents about their safety plan. However, in a recent school meeting with a mother, we discussed safety and came up with a plan. It's something that needs to be addressed, whether you work with children in the schools or in outpatient settings. I am a co-owner of an outpatient clinic, and I also do a lot of work in the schools. Now, we are using safety issues and concerns to justify medical necessity; to support why a child needs OT services. Children with autism cannot identify some of this basic information, because they are at risk for running away, we need teach them how to stay close to their parents.
Facts About Autism
This may be a review for some of you, but it is a good reminder of some of the characteristics of autism. It is because of these characteristics that it's even more important to pay attention to safety.
One in 68 children have a diagnosis of autism. According to the CDC, it’s more common than pediatric cancer, diabetes and AIDS combined. Autism is five times more common among boys than girls. It is distributed throughout the world in all races, nationalities and social classes – autism has no boundaries.
It is approximated that autism can cost a family up to $60,000 a year, on average. In addition to insurance costs, once the child leaves school and transitions into adulthood, the cost of caring for an adult with autism is very high.
Approximately 83% of people with autism have sleep difficulties. I would say more than half of the children that I work with have sleep difficulties. If a child is up all night, the parent is exhausted.
It is estimated that 62% of families of children who elope avoid outdoor community activities. Families start isolating themselves, due to challenging behavior, or due to the fact that they're scared to leave because they're afraid their child is going to run away from them. Families become so isolated, and as a result, the community doesn't get to know the family and the children. I think about the small community where I live, and most of my neighbors and the people around me, they know and recognize my children. If they saw my children at a gas station, or by themselves somewhere playing in water, they would say, “Hey, Tara, I saw your kids. What were they doing out by themselves?” If you have a family that can't get out with their children, the neighbors and the community don't get to know or recognize them. With the child in Oklahoma, no one knew who he was, or who he belonged to. We need to support families on how can we get them out into the community.