Why Does My Autistic Child Have No Awareness Of Danger?

Earlier today I was walking home with my autistic son. The closer we got to home the less he wanted to hold my hand so, rather reluctantly, I let him go. We were on a pathway with no other way other than straight ahead and I could see our home right ahead.

Without so much of even a glance my son stepped off the path and ran across a road at the end of the street. Thankfully I live in a quiet street but my son’s lack of danger awareness scares me.

My son is almost ten but he still can not safely cross a road himself. He has no concept of waiting at lights for the green man, no idea of road safety, no idea that sharp knives should never be touched and definitely no idea about the dangers of water. He is very typical of most children with autism. My son has no awareness of danger which puts both him and others at risk continually.

But why do so many children with autism have no awareness of danger and is there anything we can do to help them?

There are very valid and understandable reasons why autistic children (and adults because for some this will be a lifelong difficulty) struggle with danger awareness. I will break them down and explain how we can help a child or adult learn danger awareness despite having autism.

1. Rigid thinking and lack of imagination.

This isn’t lack of creative imagination but more social imagination and understanding people and events that have yet to happen or be experienced directly. How this presents in daily life for a person with autism would be a very literally and black and white thinking along the lines of ‘since I have never been hit by a moving car it is therefore impossible that this could ever happen.’ They can not ‘imagine’ that anything other than what they have experienced could happen. Even if they have came across a danger before such as water that was out of their depth a person with autism may struggle to generalise that experience. So if they were out of depth in a pool they visited on holiday once they may only link the danger of deep water to that particular place and time and not generalise that danger to all pools or beaches.

How to help: Never assume someone with autism is incapable of understanding. Use their way of thinking to help them. For example point out speed limit signs when out and talk about the fact that the faster a vehicle moves the more dangerous it can be. Linking speed to danger is a very important message that can be generalised as it is very rule based.

With water point out warning signs that are often universal too and if there are any lifebelts around talk about why those are there and how this points out danger. Never assume anything so when buying fireworks take time to show the packaging to the child or adult and let them see or read the warnings for themselves if they are able to. Repetition is often the key for anyone but especially so for someone on the spectrum who may require extra processing time.

2. Uneven developmental profiling.

What this means is that while they may, on the surface, seem to function similar to children or adults their own age there may be areas like social skills or awareness of the world around them that they struggle with. It is very true that autistic’s see and experience the world in a very different (and wonderful) way but this may mean they focus on or obsess on things to the detriment of other skills. They may have a unique and amazing ability to tell you the make and model of every car that you pass, for example, but have no idea where the local police station is should they need help. It’s not that they are not observant just that they have focussed on something else instead, like how many bricks form a pattern on the next door neighbours wall.

How to help: Give them a reason to focus on what is necessary. So if you feel it would be worthwhile them knowing where the police station is explain why and have a visual chart with a photograph so they have to place the photograph either on the map or somewhere else to help them visualise what you mean by the police station and why it’s important to know where it is. Having visuals for traffic lights or other safe places to cross and looking for these helps too. In your home allowing them to stick warning stickers on things like sockets can help remind them of potential danger too. Visuals simplify, are easier remembered and are portable. I can’t recommend them enough!

3. High sensory needs (that can either overwhelm them or lure them to the point that everything else gets forgotten.)

For my son the lure of water is so high if he sees it he wants to touch it so badly that he can not see anything else going on around him. For others their anxiety levels can rise so suddenly when they have so many sensory stimuli bombarding them at once that they just have to run or drop to the floor and they blank out everything else in order to cope. This may happen suddenly in the middle of a road if, for example, they heard a dog bark and they are scared of dogs.

How to help: If you know somewhere will be noisy then noise cancelling headphones may help. Sunglasses may help with bright lights and having fidget toys may help redirect the need for sensory feedback too. My son has a massive lure (and fixation) on elevators so I allow him that ‘fix’ before I expect him to do what I want. I use ‘first lift, then shopping’ as otherwise he would simply run to the elevator while I shopped. It’s about working with and adapting to sensory needs rather than expecting them to suddenly disappear. Be creative and, if you can, even ask your child about what things stress them or what they enjoy and see if together you can find a way of supporting them.

Of course autism is a spectrum and for every autistic person who has no awareness of danger you may have another, like my daughter, who is hyper aware and as a result makes herself ill with worry at perceived dangers that are extremely unlikely. A shark eating her up at the local public swimming pool is hardly going to happen but she will fear it anyway.

Living with someone who has limited or no danger awareness (or even hyper aware and therefore highly anxious) is difficult. It takes patience, time and a willingness to adapt and understand to help teach danger awareness, but it can be done. I know for some children (and adults) there will be extra barriers such as learning difficulties and communication difficulties and some children will never reach a level of awareness or understanding to have any grasp of danger awareness at all.

I continue to do what I can to help my son learn road safety. While he is learning though I make sure to keep him as safe as possible. The more I teach him about what I feel he needs to know to be safe the more he teaches me about how smart and wonderful his way of looking at the world is too.

It’s all about balance. Independence verses safety, teaching but being willing to learn too.

Lack of danger awareness can be terrifying but with patience and understanding it can be taught. Never underestimate an autistic person’s ability to learn.

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Coping With Worry As A Parent To Children With Complex Needs

One Sunday three months ago things changed in my family. Up until then I always worried about my non verbal severely autistic son but it was mostly around his inability to be understood, his challenging behaviour and what his future might be like. That changed on the 4th of March when I found my son face down on his bed semi conscious. He has just had a seizure.

That day he went on to have three more seizures and he slept on and off all day, not eating but at least having small amounts of fluids. He was referred to neurology though he already attended. An emergency appointment took 8 weeks but finally on 23rd April he saw the neurologist and an epilepsy nurse. She wanted an urgent MRI as Isaac has NF1 which causes tumours to grow on his nerves and a previous scan had shown Isaac had a tumour on his optic nerve.

However before we even had a date for his MRI on the 15th May I had a call from Isaac’s school to say he had arrived sleeping and had been sleeping all day and semi conscious. I immediately knew he had had another seizure. He was not home ten minutes when his eyes began rolling, his arms shaking and his mouth foaming. There’s general vague worrying for your child and then there is urgent medical worry. Once again it was confirmed by a doctor he was having some sort of ‘episodes’.

A week ago today he finally had his MRI under general anaesthetic. It’s his fourth one and I am worried. If his tumour has grown then chemotherapy is an option. If the tumour is stable we could be looking at epileptic medication. The future is unknown.

Yesterday Isaac had another episode in the park. He was violently sick this time. His sister was terrified and it was very challenging getting him safely home.

Things have changed. While I try to stay positive and keep my faith it is hard not to worry. How do you cope with worry when your child has complex needs?

I decided to reach out to some friends to ask how they cope with worry.

Charlie (whose son was having surgery the same day Isaac had his MRI) told me: ‘I try to stay busy when he’s in surgery and I remind myself of the reasons we’re doing this and the benefits rather than what might go wrong. It’s always a tense time and even though I keep my mind busy I’m physically exhausted as soon as he’s back safely with me. (www.ouralteredlife.com)

Steph (who writes at http://www.stephstwogirls.co.uk) had this to say: ‘All I can really relate to for this is when Sasha was in hospital for those 10 days three years ago. She had to have a CT scan rather than an MRI but there was other stuff to worry about, like her leaky valves… I guess I just tried not to think about it but in reality what I did was suppress it all in order to be as matter of fact about it all with her as I could be and prepare her/keep her calm.’

Lisa said ‘I don’t always realise I have been worried until after the event and then it feels like a weight has been lifted. I’m a massive over thinker but tend to have a positive outlook for the most part. Sometimes things haunt me afterwards…post trauma?’ (http://www.alifelessordinarywithautism.wordpress.com)

Cara (http://www.lylasangels.co.uk) told me: ‘I don’t worry, it’s like i go numb and just go through the motions. Before Lyla’s hip reconstruction last year a friend asked me how I felt about it and I went through my spiel about knowing it was going to be a tough recovery etc and he said yes but how do YOU feel? And i didn’t have an answer because I had no idea how I felt, I felt nothing really about her actual operation. She’s been under GA a couple of times before that for mri’s and I wasn’t worried or anxious, just numb.’

Maxine (http://www.downinfrintplease.blogspot.com) told me how running helps her cope: ‘Oh absolutely the running is my saving grace. Especially because I am always trying to fend off injury so there is such total granular focus on posture, cadence, breathing and there is no room for anything else in my thoughts for that blissful time. The outdoor space is open overhead so nothing visually pressing down on my shoulders. I am utterly free from it all when I run, and ever so much more able to cope thereafter. I also don’t pressure myself for times or even to run all the time (I take regular walk breaks) so it is only about the freedom and ‘me time’. If I don’t have it I am a wreck from trying to keep track of everything. I can’t imagine coping without it.’

Gemma (http://www.islasvoice.co.uk) uses humour to cope with her worry. ‘I am mostly numb and I hide everything with humour.Most of the time I try not to think because I know when I do my worrying consumes every bit of me.Luckily we don’t have any health stuff to worry about.Instead I wonder why everyone has discharged a severely autistic child and she has no support. I worry I’m a shit mum. I worry I should be fighting more. I worry she’s not getting everything she needs and should be getting. I worry about what will happen when I’m no longer here. Then I start laughing and joking and in my head it’s all good but I know it’s denial. It’s how I get through each day.’

Sally, who blogs at http://www.hunterslife.co.uk told me how her son helps her with her worries: ‘If I start worrying about all the things that I should be worried about – all the unknowns about the future (or lack of it) – I drown. So I try to take my cue from Pudding more and just live in the moment. Not very good at it but it’s a heck of a lot better than thinking about the alternatives.’

Jeanette finds crochet helps: ‘I use distractions here. My brain over-thinks all the time so I either distract it with a bit of crochet or some music (can’t do the latter if not on my own). The “having to concentrate on stitches or you’ll screw it up” really helps, that and being around others who “get” if you might be quiet. (Www.autismmumma.com)

Julia confessed to how anxious and worried she gets: ‘Noah had 3 anaesthetics in under 7 months. Each time I carried him to the room and held him till he was under. I buried the fear deep. Buried the worry. He needed me to be strong. I focused on him as a patient sometimes, rather than my little boy. I put my nurses head on as such as it was the only way I could cope. As he slept I’d talk to my sister in law about him. She’s also a nurse and it helped me get through it all. I still have nightmares about those months. He only has to cough and burning anxiety starts climbing up my body.’ (Www.bloomingautism.com)

Lucy (http://www.revelationsofaslummymummy.blogspot.com) is much more pragmatic about it all: ‘Bizarrely, I worry about not worrying enough. I’m a very pragmatic person, have had mammoth amounts of trauma previously. Anyway, I just cracked on, partly as a survival mechanism and partly because I knew no different. For me, that works, but I always wonder if my pragmatism perhaps leads to complacency with Brecon. He seizes every day, and it’s just life. He bites, pinches and scratches me everyday, and it’s just life. I really really hope my approach doesn’t lead to him being less efficiently cared for or me being less proactive in terms of getting him what he needs.’

Finally Anne from http://www.fainbowsaretoobeautiful.com told me: ‘I worry all the time. I find the best thing I can do is try and ‘park’ worries for a while. Realise I’m worried about something but let it go with the knowledge I’ll return to it in a while – whether that’s a few hours, days or months.’

So we all worry. My coping mechanisms right now include swimming, praying and of course writing.

One thing I do know though is that worry won’t change anything. Everyday is a fresh day and a chance to start again. And right now everyday Isaac doesn’t have a seizure is a bonus. Thankfully we have many more seizure free days than we do seizure filled ones. As for the MRI…well I will share those results as soon as we know!

And Isaac? Well he is flapping, smiling and laughing through it all. He isn’t worried about anything at all!