The world according to Ellen

Like a lot of autistic people, Ellen finds the world a scary and unpredictable place.  The rest of us live by rules, but they are rules which Ellen doesn’t understand and she hasn’t worked out how to predict what they might be.

For example, banging a drum makes an interesting booming noise.  Banging a tambourine makes an interesting tinkling noise.  And banging another person makes them go, “Ow!” which is a very interesting noise.  You are usually allowed to do the first two of these.  But someone usually stops you if you try to do the third one.  Ellen has no idea why this is.  And if you are not allowed to bang another person, what else might you be forbidden to bang?  A teapot?  A cat?  A banana?  Ellen has no way of working out the answer to this question. 

Occasionally Ellen will see her sisters play-fighting.  They seem to be banging each other and I, maker of the rules at home, don’t try to stop them.  So now apparently the rules have changed and Ellen has absolutely no idea why.  It’s this failure to understand the principles governing everyone else’s behaviour that makes the world such a frightening place for people like Ellen.

So in an attempt to make the world safe and controllable, Ellen imposes some rules of her own.  For example, if we go out for dinner, she will only have chicken nuggets and chips.  There are plenty of other foods she likes.  Some she likes better than chicken nuggets and chips.  But she knows that if she always chooses the same thing, eating out will be a safe and predictable experience.

She tries always to do the same activities.  Different activities can take place on different days as long as each one is always on the same day of the week and Ellen has a calendar clearly showing them. 

We must do certain things only at certain times of the year.  Ellen loves me to take her swimming, but it has to be in the October half term holiday.  If I suggest a swimming trip in any other month, there is an extreme and negative reaction.  We must visit Granny only in the summer holiday or at Christmas.  On Friday when I suggested visiting Granny next day, Ellen started hitting herself and shouting that she wanted to go back to the previous weekend (although she surprised me by changing her mind on Saturday morning and coming with me after all!) 

Wherever we go – shops, restaurant, hospital, zoo, swimming pool, theme park – she must go and play with the hand dryer in the disabled loo.  This again gives every outing a predictability and makes the world a safer place.  Hand dryers are predictable.  Ellen can understand how they work.  People do very unexpected and alarming things, but hand dryers always do exactly the same thing.  Press the switch or put your hand under the sensor and this will switch on a motor which drives a fan round, which blows air over a heating element and comes out as a stream of hot air accompanied by a very gratifying noise.  And they do this reliably, every time.  They never do anything unexpected.

There are 3 words we try to avoid with Ellen because they provoke a very extreme reaction, often involving a damaging degree of self-harm: new, different and change.  Birthdays and Christmas are anxious times for her.  She loves opening presents, loves the excitement involved and the surprise.  But if the present contains something unfamiliar she becomes very distressed.  It’s new, different and a change.  So we give her the same things every time – chocolate, bubble bath, a personal stereo or Dictaphone, bubble wrap.  She gets though several rolls of bubble wrap a month.  Bubble wrap is predictable and therefore safe.  It always behaves in exactly the same way and makes exactly the same noise when you pop it.

The emotional pain arising from an unpredictable change can be, for Ellen, quite literally unbearable.  Something has to be done, at once, to make the world feel safe again.  The only way is to replace this unmanageable emotional pain with a manageable physical one.  That is why Ellen self-harms, sometimes with catastrophic consequences – she has lost all the sight in one eye and more than 50% in the other as a result.  It might look like a temper-tantrum, but it isn’t.  It’s a frantic attempt to make this scary, unsafe world seem safe and controllable again.

Last week I took Ellen to the garden centre.  This is her favourite outing.  She always has chips in the cafe.  But this time we arrived early, while they were still serving breakfast.  They weren’t yet frying chips.  The lady behind the counter explained this to Ellen, and suddenly Ellen found herself plunging into a vortex of unpredictability and danger.  The world was no longer a safe place where you could go to the garden centre and know that you would be able to have chips.  Ellen set up a loud wail and began biting her hand and wrist and punching herself in the face and head.  Thank God for a kind and understanding employee in the cafe.  She went and had a word with the chef and he agreed to cook chips especially for Ellen – crisis over!

I have come to the conclusion that deep in the soul of every one of us there is a bit that reacts to unpredictability the way Ellen does.  We need to know that there is something in the world that never changes and can always be relied on.

I deal with change pretty well.  I like things to be different, and I get bored with routine.  I like spontaneity – getting up in the morning and deciding to do something I hadn’t thought of until that moment, or packing a bag on a whim and going away for a weekend.  I like surprises, the more unexpected the better.  Yet even I have this core somewhere inside me that needs to know there is something predictable that makes the world safe.

In the last two years I have survived a lifequake.  I have lost my marriage, my job, the home where I lived for over 20 years, and have had to learn to do things I’ve never had to do in my life before – financial planning, self-assessed tax, booking holidays, diy, gardening.  I’m loving it!  I’m finding a confidence I’ve never known before from discovering that I can do things I didn’t know I could do.  Nonetheless, somewhere very deep inside me is a bit that longs for the unchanging. 

In particular, I have wanted God not to change.  I was quite confident that He wouldn’t.  After all, didn’t He say, “I am the Lord, I change not”?  But then, a God who doesn’t change and who champions marriage throughout the Bible would save my marriage, right?  He would protect my children from the emotional damage involved, right?  Like Ellen’s frantic behaviour, some of my prayers and some of my conversations with counsellors were  desperate attempts to make God predictable and controllable.

But God is far more expansive than my understanding of Him.  He refuses to be squashed into my box.  Some of my internal struggling looked very like Ellen’s self-harm.  Some of my incessant bleating (usually by email) was very like her loud wailing.  Suddenly the world was unpredictable, and so was God, and it all felt very, very unsafe.  What’s more, there was nothing I could do to control it or make it safer. 

Now that the dust has settled, though, I have discovered that there is something that never changes, and yes, it is God.  My understanding of Him has, at times, proved wildly wide of the mark.  My vision of Him has been far narrower than the reality.  His capacity to surprise me is infinite, and I keep having to revise and adjust my image of Him.  But still, He has been the solid rock beneath my feet, and though the lifequake has tossed me high in the air and even upside down at times, I have always come back down with that solid rock immovably in place, and discovered that the world is safer than I ever dreamed – the worst can happen, without destroying me or my children.  And out of it all the most serendipitous discovery has come – God really is Love, and I am far, far more loved than ever I realised.  I feel more loved than I have ever done at any time in my life.  And that makes the world a very safe place indeed.


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