On Sunday 22 April, an 11-year-old boy died after being hit by a train in Sydney.
This precious boy had autism, was non-verbal, non-responsive and left a respite care facility by himself. But we need to talk about the terminology used around this incident, because many media outlets keep referring to him "running away". But in fact, it’s not at all running away. It's an aspect of Autism Spectrum Disorder (ASD) where the child wanders.
Wandering. What is it, and what are the community responsibilities?
Wandering is also referred to as elopement, fleeing and/or absconding.
It’s so common yet very little information and support exists. Whilst we provide parents and stakeholders with specific training and resources pertaining to this, we do also feel it our responsibility to educate the general community on an issue that very much has the likelihood of affecting them.
Wandering is the tendency for an individual to try to leave the safety of a responsible person’s care or a safe area, which has the potential to result in harm or injury.
Roughly half, or 48 percent, of children with ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings. The statistics also tell us that 58 percent of parents of children with ASD report wandering/elopement as the most stressful of ASD behaviours (National Autism Association). Very few have received expert advice on this.
Listen to Erika on Kinderling Conversation:
More recently, two different types of elopement have been identified: bolting (rapid, goal-directed movement from a supervising adult or protective area) and wandering (moving about without a clear course or destination).
More than one third of children with ASD who wander/elope are never or rarely able to communicate their name, address, or phone number.
In addition to ASD, wandering is also quite common in other neurological conditions, such as dementia.
Why might a child wander?
- It is not uncommon for individuals with ASD to become over-stimulated with crowds, noises and a range of other stimuli, hence escaping this by retreating to another environment.
Many individuals with ASD gravitate towards bodies of water because they possibly associate water with alleviating many of their sensory needs.
- The individual may be wishing to gain an item or activity, and may be searching for it.
- He or she may be looking for a particular reaction/interaction from others (e.g. someone to follow after him or her).
- For some, there is no intent or recognition of that social +spatial part of wandering. E.g. I understand space well and can feel a large amount of distance or a short amount of distance. There may also be the curiosity factor, and the want to explore.
- For some conditions where we may see wandering taking place, other factors include: changed environment, loss of memory, excess energy, boredom, searching for the past, and/or discomfort/pain.
In addition to drowning, wandering brings with it other high risk factors, including but not limited to exposure to the elements; dehydration; falls; hypothermia; traffic injuries; encounters with strangers; and encounters with law enforcement.
According to research, the most common location from which children eloped were the child’s home or other home (74 percent), stores (40 percent), and classrooms and schools (29 percent).
What can be done?
As a community, we can be aware of preventative and responsive actions to avoid tragic situations.
As a member of the community, you may not be the one to facilitate preventative strategies for someone, however you can educate others on the importance of these, particularly any families you know who would benefit from some additional support in this area. Encourage the following:
- Security of their home.
- Ensure the person always carries ID and/or wearable technology.
- Engage the services of someone who specialises in Positive Behaviour Support. We have Behaviour Specialists who can assist, if need be.
- Have a plan. Robust plans are contained within Autism Swim’s Wandering and drowning prevention toolkit.
- Undertaking Autism Swim’s training and membership, which includes wandering prevention.
If you come across someone in the community, and they seemed confused, lost and/or like they should have supports with them and they don’t, stick with these general guidelines:
- Hopefully the local police have a profile on the individual, particularly if they are considered high-risk for wandering (we can assist with this). Regardless, contact them and state you have found someone whom you believe to be wandering, and would like some support.
- Source assistance from other bystanders, if need be.
- Do not leave the individual. Even if he or she appears to not want you near them maintain line-of-sight so you are aware of their position at all times. Remain alert in terms of them approaching bodies of water.
- See if they are wearing any identification of wearable technology (such as a tracking device).
- Use the minimum amount of words as possible, and communicate using a gentle and reassuring tone (e.g. “I’m just going to wait here with you. I hope that’s okay”).
- Understand that the person may have communication difficulties and hence, may not be able to give you the information you would normally request (e.g. their name and where they live).
- Give them up to 1min processing time when asking them a question (do not deliver more questions if they don’t answer you straight away).
- They may be feeling confused and fearful. Try to remain as calm as possible, and if possible, you can discuss an area of interest with them as a distraction (e.g. if you notice them to be wearing socks with Thomas the Tank Engine, you can bring this up).
- Many individuals with ASD are visual learners, so if you have anything visual that may help with your messaging (such as a map), this can be helpful. He or she may have some difficulty with speech, however may be able to write or type their name/details, so do try and encourage this.
- If you are able to communicate effectively with the person, you can ask them very specific questions. Rather than ‘Where do you live?’ you might ask, ‘What buildings did you just walk past?’ in trying to ascertain the direction they’ve come from.
Republished from Autism Swim with permission.
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