When You and Your Autistic Child Need 'Roadside Assistance'


Imagine your body is a car engine.

Sometimes it ticks along quite nicely, cruising down the smooth road with no bumps, potholes or distractions. When your engine is purring like this you can relax and take in the view, enjoying the ride as you go.

For my autistic son, this smooth road is his comfort zone. On this road he is at his most independent and communicative. He knows where he is, it’s safe, familiar and predictable. He needs nothing more from me than simply knowing I am there in the background should he need me, like a roadside assistance card in his back pocket. He knows I’m there to fall back on.

Now imagine you didn’t sleep well at all last night and you’ve been awake for hours worrying about something, so your engine is running a little sluggish today. The road has become harder to maneuver, and see you’re way past any obstacles. The bright sun could be dazzling your vision or the traffic may be building up around you, and you can’t see your way through. Your engine begins to overheat, and you need help.

When this happens for my son, it becomes harder for him to be independent. His vital functions start to slip, and his ability to communicate steams away from him. His engine overheats, and the alarms set off telling me there is an unseen problem occurring. My role as his parent then becomes like the recovery truck that restarts his engine. I patch him up and follow him home to make sure he arrives safely. Or I become the onboard Sat-nav that talks him through the busy city center in a calm voice to get him home in one piece.

Finally imagine yourself speeding along an unknown road and your brakes won’t work.

You can’t stop yourself.

You’re no longer in control of what’s happening to you or your engine, and panic sets in. You feel like you could go over the edge of the cliff at any moment. Or your engine becomes so overheated that you can’t carry on anymore. You’re at crisis point, and all functions shut down.

For my son, this is where I become the emergency services that recover him and get him to safety. My tool kit of love, instinct, and resources enables him to scramble to safety and begin to recover. I carry him home and protect him from the glares of ignorance that pave the way on this road. I forward think, and helicopter around him ready for the explosion that could come at any second. On high alert (just in case) at all times, my adrenalin is pumping and I can feel his pain as if it were my own.

This is our daily life.

The road my son is on from minute to minute dictates how his engine will cope. The environment is the single biggest factor that controls his ability to function in our neurotypical world. He has good days and bad days, and so I float in between being the recovery contact card in his back pocket to being his blue flashing lights of recovery from hour to hour and day to day.

But sometimes as a family we step out of our comfort zone for more than a few hours — like we did this week on our family holiday.

A week on an unknown, unpredictable bumpy road.

So this meant my son’s engine was on overdrive for not a few moments, hours or even days, but for a whole week. His little engine was working really hard every second of the day to cope with every new smell, sound and sight he faced.

And as a result, I was on high alert too… 24/7.

Unlike when we are at home and he is in his comfort zone, on holiday I didn’t have time to build up my energy and recoup myself. So by day five, both my son and I were tired.

Tired on being on high alert all the time.

I became aware I was becoming snappy with him, and finding myself wanting to withdraw more and more. I got cross with myself for feeling like I needed a break. But simply put, I needed some roadside recovery. My engine was running low. I needed a top up too.

How could I be the recovery truck 24 hours a day, seven days a week, with no break and no top up of fuel?

Just as I recognize and meet my son’s needs day to day, I too need to learn to recognize my own engine a little better too, and do something about it before I overheat.

My advice to fellow parents is this: find something that can be your roadside assistance card. Whether it’s a coffee break, a TV program you can escape into, or family member who can babysit while you have a bath in peace.

We all need a little help sometimes. We’re all human, and the bumpy roads we all find ourselves on can take its toll at times if we don’t take the time to have our own recovery procedures in place every now and again.

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