Today’s post is rather light on the usual science.
One reader recently suggested a post on wandering. Wandering off and getting lost is a common event for many with more severe autism and while for some it may be an issue only in childhood, for many it will continue to adulthood. US news reports frequently feature this kind of wandering, but it occurs everywhere.
Minions like to wander too
The broader issue here is that many people with severe autism remain child-like their entire lives. So they continue to face many of the same risks as a neuro-typical toddler. If you do not pay great attention to your typical two year they also may have all kinds of accidents, but they soon figure out that roads are dangerous and falling from a window is going to hurt.
There are lots of clever high tech tracking solutions to help find your child, but the ideal solution must be not to lose him in the first place.
We have a high fence around our garden; we have a cover on our pool that even an adult cannot fall through and a number coded lock on the way out to the garage. So it would be hard for any toddler to wander off from our house and hard to fall from an upper window.
I think we have reached a developmental age where wandering is not likely, this is likely in part due to pharmacological intervention.
Many years ago I used to travel on business to Warsaw, in Poland, and we were fortunate to stay in a very upmarket hotel in the reconstructed old town called the Bristol. You would think this would be a very safe place. Some years later a friend was telling me how our former colleague was staying there over one weekend with his wife and their typical toddler son. The boy was left unattended and somehow fell to his death from an upper window.
We do not electronically tag all two year olds, the idea is that they are given near constant supervision and hopefully things work out well.
The big risks for kids with autism are drowning and seizures; in some cases it is a seizure while in the bath unattended that causes drowning. Drowning should be preventable. I think that with the appropriate treatment the onset of seizures in many people with autism might be prevented.
In the US on average 10 people drown each day, of whom two will be under 14 years old. Another 10 children receive emergency department care each day for nonfatal submersion injuries.
Life is a risky business.
Tracking Devices
There are numerous types of tracking device, but most have the drawback that they are removable. To be genuinely effective the device would have to some kind of bracelet that cannot be removed.
In some countries by law all pet dogs have to be microchipped. If the dog gets lost a small inexpensive scanner reads the number on the chip which is looked up on an online database revealing the owner's details.
Our neighbour’s dog wanders off on regular basis, but thanks to his chip he has made it home so far.
It would be possible to microchip non-verbal people. The problem here is that who would have a scanner? Who would know that the person was chipped? If you have to have a mark saying “I’m chipped” you might as well just write the person’s name and address indelibly on their forearm. Better still don’t lose them.
Sense of Danger
Some people say that their child with autism has no sense of danger, but is that because he has not yet developed one, or he will never have one? I remember being in an outdoor green market with Monty when we met an older boy who was in our mainstream school for a year or two. He was non-verbal, autistic and had seizures. We usually saw him strapped into an oversized pushchair. He could walk, but clearly it was deemed preferable to keep him strapped in.
Monty was used to exploring the stalls in the market and often he would be given something to taste. The other boy was there with his mother and his assistant. I started talking to the mother, Monty started to move the next stall and then the assistant “pounced”, like Monty was about to walk in front of a bus. I explained that is was OK, he was not about to run away; he had already learned a sense of danger from experience.
Clearly people are very different, but you do have to give people some space to develop and explore, if you expect them to learn.
Monty likes fire, but rather than hide him from it he is one who lights our open fire at home. He is now fully aware that you can burn yourself (and your house). We do have several smoke detectors.
So I think some people may be over protective and not allowing the child to develop a sense of danger, while some others let their moderately autistic young child roam the street in front of their home and are surprised when trouble occurs.
Dressed to Kill
Many people like to be snappy dressers; I think people should be equally attentive to how they dress their adult-sized offspring with severe autism.
I recall a news article a while back when a mother let her adult son with severe non-verbal autism wander from home. He was dressed in green military attire, like a big version of Rambo. He wandered into a neighbour’s garden and the occupant saw the intruder and called the police. The police arrived and tackled the non-responsive, threateningly-dressed, intruder to the ground. The mother turned up and was upset that the officer had man handled her child. I think this was in Canada, a little further south and the officer might have shot him.
Had the youth been dressed in shorts and a Mickey Mouse sweatshirt I doubt the home owner would have called the police in the first place, rather “it’s just that boy Jimmy from down the street wandering again, I must call his mother, she did tell me that he wanders”.
It does matter how you are dressed and how you behave. I recall another parent commenting that adults with autism are not cute, that sounded odd to me. An 8 year old with autism banging his head against the wall certainly is not cute. A well behaved adult-sized person with classic autism can be cute, more than likely he is just a big kid, or a gentle giant. If he is a permanent “big kid”, dress him like one and nobody is going to feel threatened by any unexpected behaviours.
Conclusion
Wandering can be deadly; if someone with non-verbal autism is prone to wander technology can only be of limited help.
The tendency to wander has to be matched by the level of supervision.
This blog is usually about pharmacological therapies and in many cases these should be able to improve cognition and self-awareness so that wandering is much less likely.
There will always be curious or adventurous types that will find a way over the fence and out into the wider world. Better make sure they know how to cross roads and know how to swim. Even if they are only minimally verbal, from a very early age they need to know their name and address. If they are totally non-verbal, you need a better fence, a tracking device that cannot be removed, or that permanent marker.