How an Accident Broke my Autistic Son’s Trust

My son has autism. He also has learning difficulties and no speech. I am not going to lie; everyday is a struggle. He is 9 now and slowly we have learnt strategies that help both him and the rest of the family cope.

We have learnt to use visuals to aid his understanding.

We have strict routines for school mornings and bedtime.

We use ‘first/then’ so he knows that one thing follows another.

We use social stories.

We give him plenty of time to process what is happening and what we are doing.

We let him chose between no more than two things because anything more confuses and stresses him.

We get by day to day. We have screaming and frustrations but by and large we stumble through.

But what happens when an emergency or a crisis happens and you have no time to do any of the above?

Two weeks ago I was driving my car on a very fast road with my son with me. I have been driving for over twenty years and never been involved in an accident. I explain to my son hat was going to happen using words and visuals. I was picking up a family member then we would get his sister from gran’s house and then go home. He screamed at the thought of transitioning from his comfy seat at home with YouTube on his iPad to having to sit in the car. I was patient and gave him time to process. I strapped him in and made sure he was comfortable and then I set off.

It was all going exactly like I had explained to my son in his social story. It was such a simple story with a photo of mums car, a photo of my brother’s house, my mums house, his sister then home. That was how it was all meant to happen.

Except it didn’t.

On the journey home we were unfortunately involved in a major car accident. That wasn’t in the ‘first and then’ or the social story and there was certainly no visual of my smashed up car and inflated air bags!

This is when non verbal autism is serious. In an emergency situation how do you help a child with severe autism and limited understanding cope?

How do I explain he can’t get out of the car when cars are speeding past us at 70 miles per hour? How do I know if he is injured from the crash or even in shock? He just sat there in total silence.

When the paramedic first arrived he asked my 9 year old his name. My son never answered. He asked him his age. Silence. My 9 year old has less language than an average 1 year old and all of a sudden the reality of that crushed my heart. The paramedic then asked me if I had an idea if my son was injured. He can’t even point to parts of his body in the nursery song ‘head shoulders knees and toes’ so how on earth can he say if he is in pain or where?

All three lanes of high speed traffic were halted while my car was pushed over to the hard shoulder for safety. To my son this was wonderful! He thought the car was moving again and I should get in and drive him home. That’s what was in his social story after all!

If I thought getting my son out of the house and into the car an hour earlier had been hard I had no idea! Now I had to get my son out of my smashed up car and into the back of an ambulance. He has no concept of what an ambulance is. He was not for getting out of my car.

Autism is hard. In an emergency autism can be impossible!

I could not suddenly show him visuals. I had no pre-prepared picture story. I could not give him adequate time to process! His life was in danger and sadly I had no choice but to pull him out that car and drag him into that ambulance. I wish he could understand why I had to do that but I don’t think he ever will.

My son is ok. The next day a lot of bruising appeared but thankfully it was all superficial from his seat belt. The real damage though is to his trust and no-one can give me any idea when that will heal, if ever.

While my injuries will heal over time (ligament damage and bruised bones) I can at least understand what happened.

My son with autism has no concept of ‘emergency’ or even ‘different’.

He won’t entertain any social stories now. He just screams when we say ‘first and then’ and he throws away all the visuals we have.

He can not process the fact that an emergency happened and things had to change.

A friend said about the accident ‘thank goodness nothing was broken except the car’.

Sadly the crash broke much more than a vehicle.

An emergency situation broke my son’s ability to trust me and there is no insurance that will cover that.

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How did we get here?

As I sat holding my frightened 5 year old daughter in the back of an ambulance at 2:30 in the morning, for a split second, in the midst of fear and exhaustion, I wondered how exactly did we get here?

Here I was giving details of my daughter calmly to a stranger in a green uniform when all my body craved was sleep. I would say adrenalin was taking over, but medically this is impossible as I live with a potentially life threatening condition which means my body does not produce stress hormones. Moments earlier I had been lying in my bed praying silent prayers. It seemed at that moment they were not to be answered.
Naomi had been struggling for the last 24 hours with nose bleeds. At the tender age of 5 she had experienced them before. But nothing on this scale. I had already been in to her 4 times since she had been put to bed. But they just kept restarting. It was getting scary, for her and for me, and for my husband. Dad was becoming frustrated that his baby girl was not able to let him help. So he let me deal with this one. But this one was never ending. And then she started vomiting up blood. Again and again. I have never been so terrified. So I called for an ambulance.

So that was how we ended up at accident and emergency in the middle of the night with one of my babies.

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As I look in the mirror at the scratches and bruises on my neck caused by my five year old non verbal son I once again wonder, how did we get here?

How did we get to the place where he punches us, kicks us, bites us, scratches us and throws things at us? When did it all start? When did I start dreading reading his home/school diary because his behaviour has become so challenging? Sometimes things just gradually creep up over time until you realise it has become overwhelming. One unpaid bill soon leads to another, one moment of shouting at your children soon becomes the norm, one day giving in to their food fads leads to constant demands for chocolate for breakfast. One day Isaac having one tantrum and finding it funny to kick something has lead to him repeating this behaviour often. One reaction from someone, negative or positive, has lead to challenging behaviours becoming a daily occurrence. One day having mashed potato for dinner leads to constant demands for the same food to be repeated. Then one day we had no mashed potato left.

So that was how I ended up with bruises and scratches on my neck from my five year old autistic son.

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As I find myself in yet another meeting with professionals discussing my daughters personal needs regarding going to the toilet I once again wonder to myself, how exactly did we get here?

With only 7 weeks left until she finishes nursery and only 4 months until she starts school, yet here we are talking with a group of professionals about strategies that might help her come out of nappies. Did I ever think I would have 5 year old children still wearing nappies day and night? No. Did I ever think I would need professional help to potty train a child? No. Did I expect both my children to have additional needs? Not at all. She seemed so perfect at birth. And later on I just thought she was slow to walk. In fact, I had very few concerns about my little princess until she started nursery school at 2 and a half. It was quite a shock to realise that my beautiful blue eyed girl had autism, and with it bowel and bladder issues, high anxiety and gross movement difficulties. It is funny how you soon adjust to talking about your child to professionals like it is a daily occurrence. In fact, for me, it pretty much is a daily occurrence now. You get used to the paperwork, and the forms and constant phone calls. You even refer to some people on first name terms like you have known them since school. You learn to ignore some of their ideas, you learn to adapt other suggestions and you know who to chase up for the missing paperwork. You learn the talk and the lingo and the laws you need to quote. And even though it breaks your heart, you learn to call and order nappies for your school aged child because you know you are still going to need them. You’re on to the fourth attempt at potty training now and you know it is going to be, like everything else, a long journey ahead.

So that is how I am still discussing pants and toilet cards and reward charts for potty training my 5 year old.

How did we get here? I still ask that every time we visit yet another hospital, or visit the dentist or eye clinic as we do every six weeks, or when we now add in the ENT referral for Naomi. If the NHS did reward cards like MacDonalds do for their hot drinks I would be high on caffeine by now. It feels like we have our own parking space at the clinics these days.

Life happens. Sometimes it can feel overwhelming. Sometimes it is relentless. Sometimes you just find yourself in a place you never dreamt you would be. But it is ok. If someone had told me I would have been in any of these places this week when I first gave birth to my beautiful twins in 2008 I would have struggled to believe you. It is a journey. We cope with today, look to the future, pray, hope and keep on going. One day soon I will be back on the mountaintop celebrating with my children in some new amazing thing they have achieved. And I will enjoy it all the more for having been through these valleys.

And you know what, even in the great times I will still wonder, how did we get here?

How? Because through it ALL God is there. That is how I got here and that is how I will get out of here too.

(Naomi lost a lot of blood but was released from hospital that night and is now recovering. We have strategies in place at home and school to deal with Isaac’s behaviour and there is some minor progress towards toilet training one of the twins)