Not All Those Who Wander Are Lost
I’ll never forget the first time George went missing. He was six years old. We lived in a maisonette at the time with two sets of stairs and the bathroom on the second floor. I simply went to the toilet, while both of the children were playing in the living room. When I came back downstairs, only my daughter Grace (who was 7 at the time) was there.
‘Where’s George darling?’ I asked.
‘I think he went upstairs mommy,’ she replied.
I knew he wasn’t upstairs as I’d just come from there, and as I turned back into the hallway to look down the stairs I felt sick at the sight of the front door – wide open. In a hot panic and with clammy hands I frantically shoved on my shoes and ordered Grace to do the same while I searched for my phone.
‘He’s gone, he’s GONE!’ I shouted, Grace looked at me wide eyed and overwhelmed.
I ran down the stairs with Grace behind me and called 999. He’s non verbal, autistic, no awareness of danger… I explained to the police as I reached the corner of the road we lived on; one of the busiest and most dangerous crossings in the centre of Sutton Coldfield.
I could hardly hear the police over the noise of traffic and shoppers circling around us. I didn’t know where to start, where would a six year old have gone who has never been out alone before? Do we go right or left? What if he’s gone the opposite way?
There was a cinema on the corner leading into a row of shops and supermarkets. We’d only been in the cinema once when George was very small and it was an unsuccessful trip as he couldn’t cope, so we left shortly after the film started. I didn’t think he would be in there but I couldn’t leave it unchecked.
No one had seen him in the cinema, the staff checked all the screens. So we went from there to the Tesco Express holding up George’s photo on my phone, desperate for someone to say they had seen him, giving rushed explanations about his non verbal autism and that the chances of him responding to his name were slim. Every person we came into contact with we asked, and all were very concerned and helpful. The police had advised me to go home and wait for them to arrive, but there was absolutely no way I could do that. On coming out of the second shop on the search, with still no sign of him the tears flowed hot down my face with worry. Grace on seeing me cry broke down in tears too. We kept on to the next shop.
‘We’ll check Iceland next door, and if he’s not in there we’ll go home like the police said incase he comes back,’
With each ‘No, haven’t seen him,’ I grew more needy of the police and what they had said, which was that if George had only gone a short way and decided to come home, I was risking missing him the longer I was outside. We ran into Iceland, a shop we had regularly taken George into. There here he was in the 3rd aisle, crunching through a bag of his favourite crisps – Quavers.
Without a care in the world; scanning the shelves for his next snack, oblivious to the fact that for the last 30 minutes all that had run through my mind were the most disturbing scenarios of what might have happened to him.
ANXIETY FOR THE FAMILY
That was 4 years ago. Since then, he has managed to escape from home another 4 times. The police have his photo and are more than aware of him; as are the neighbours. The owners and staff of all the local shops in the area know him by name and have my phone number in their staff room. For any parent whose child is missing, the feeling of failure, guilt and loss immediately set in. When they can’t talk or communicate effectively; the ability to stay calm or focused with any degree of positive thought is near impossible. The things that go through your mind are terrifying and for me, it was that George’s no fear personality made him an even easier target for malicious/ sexual predators than typical children of his age. The reason I say this is, when you have a child who communicates non verbally, you never quite know exactly what they understand. George was oblivious to stranger danger.
Nearly 50 percent of individuals with ASD have attempted to or have successfully eloped from a known adult.
In her blog elopement-in-children-with-autism Behaviour analyst Rhonda Davin Ph.D points to ‘A systematic review of functional analysis and treatment of elopement (2000-2015)‘ to offer the most common key reasons as to what may motivate the child to do so.
● To get away from a place, activity, or person (escape)
● To obtain access to an item, activity, or person
● To engage in an intrinsically pleasurable activity, such as running
● To gain attention
As an Autism parent before George wondered for the first time, I had an awareness to some degree of the dangers of wondering. Most of the information I had read was of situations in which the incident had led to devastating consequences – the leading cause of death in children with autism is drowning, with 90% aged 14 and younger associated with wondering. Realising that your child with autism falls into such a high risk category with potentially fatal consequences, is an uncomfortable reality to accept. Instinctively as a parent you want to protect your child, but how can we do this while also allowing and encouraging their growth and independence?
COMMUNITY AND PROFESSIONAL AWARENESS
Behaviour specialists and a Psychiatrist had only just begun to work with George and I didn’t know or think about what had caused him to do it. I was just so relieved to have found him, alive and safe. We made sure all of our family were aware and that the school were notified of what George has the potential to do. The shock and worry of the event itself made me first and foremost assess the security of our home. Keys were hidden in hard to reach places, doors were constantly locked and when I took a shower or needed to visit the toilet I would make sure Grace was on watch. As a single parent, some responsibility inevitably is passed on to siblings and they become young carers.
I went across to the string of shops that were nearby with George in tow and personally introduced myself to the managers and the staff on duty; explaining what had happened, where we lived, passing them all of my contact details and making sure they had a good look at George in person. I handed them small passport photos to put up in their staff rooms and felt a little comfort in their assurance that they would remain vigilant and contact me if they ever saw him alone again.
As time has gone by, George’s intelligence has superseded his verbal communication. When it isn’t immediately obvious how much your child understands, underestimating their intelligence is dangerous. We have found out the hard way. He has found hidden keys and let himself out, escaped through the back gate when we were all in the garden at the same time, even got up extra early and escaped through the garage door while everyone was still asleep. Each time is equally as scary as the last, and the same dreaded thoughts of never seeing him again fill our minds.
Some of the times, I have been fortunate enough to catch him myself (It was raining heavily, he put on his wellies and raincoat and was running to the park while I made dinner in the kitchen), and other times I’ve had to rely on the police to find him. The last time, he took his bike and rode all the way to the Youth Centre almost 3 miles away. He has been found in the Valley with his shoes and socks off paddling in the stream, and even taken himself to McDonalds demanding chicken nuggets (although he had no money and nuggets were off the menu as it was breakfast time).
Another alarming statistic: 35 percent of families with wanderers reported their child is “never” or “rarely” able to communicate his name, address or phone number, either verbally or by writing or typing.
HOME SECURITY AND TRACKING
That particular occasion was the longest he had been missing and the furthest he had gone from home. It was also the most premeditated – leaving early in the morning while everyone slept without making a sound, when he is usually the loudest person in the house. We now have sensor alarms fitted to any exit doors in the house, which sound out every time a door opens. George dislikes loud noises, so the alarms act as a deterrent to stop him in his tracks and gives us enough time to get to him before he seizes his chance to escape. We have a GPS tracker for his shoes, but all of this will come into question as he grows into an adult.
The article ‘Ethical advocacy across the autism spectrum’ discourages tracking devices as a restriction of movement on Autistic adults, leading to institutionalisation within the home by their carers.
Luckily, I still have some time before having to re-think the ethics of tracking my son as an adult. I hope I won’t have to, and have attempted to focus on giving him some independent time with his carer, away from myself and his sister so that he can be the ‘big boy’ he wants to be. Giving him money and teaching him how to make a purchase in a shop successfully. Trying to improve his basic conversation skills so that he can answer his name, his age and his address, and he can transfer that speech to other adults as well as me. I’m trying to teach him the function of a mobile phone for communication other than games, how to call myself or his dad, how to send a text message. Instead of barricading him into his own home, I need to give him the tools he needs to navigate the outside world as safely as possible in case that situation happens again.
Because of all the studies and speculations, even the most common key reasons that motivate the child to elope, what I personally believe motivates my George as an individual is missing. I believe he silently craves independence in a world where he is over protected and misunderstood.
I believe what motivates him is to show us all that he can. And that for every barrier or obstacle that he comes up against in his life – he will always be one step ahead.
Boyle MA, Adamson RM. Systematic Review of Functional Analysis and Treatment of Elopement (2000-2015). Behav Anal Pract. 2017 May 17;10(4):375-385. doi: 10.1007/s40617-017-0191-y. PMID: 29214133; PMCID: PMC5711741.
McCoy MS, Liu EY, Lutz ASF, Sisti D. Ethical Advocacy Across the Autism Spectrum: Beyond Partial Representation. Am J Bioeth. 2020 May;20(4):13-24. doi: 10.1080/15265161.2020.1730482. PMID: 32208091