Extreme displacement

A little over three years ago our family underwent a violent change in circumstances. Magteld died, at the age of 38, from breast cancer, leaving the three of us who remained bereft and bewildered. To make things even more challenging, we had just emigrated to the Netherlands. Her long-cherished dream of returning, and mine of starting a new life in her country, was twisted out of shape in the last months when she was told her cancer had returned. We had sold our house by then and it was too late to pull back, so we pressed ahead like an Atlantic rower trying to outrun a storm. Magteld lived for just seven more weeks in her native land.

I am going to close this blog shortly. Euan turned 14 earlier this year and is at the point in life where his need for privacy outweighs my need to write about his progress. But before that I want to look at what we've learned about autism in the most exacting of circumstances. We've been tested by grief, by isolation, by the barriers of language and bureaucracy, and we've survived. I sometimes even dare to think we're thriving.

Looking back I sometimes wonder what on earth we were thinking of. It was like attempting to recite the complete works of Shakespeare from memory while trekking to the South Pole on crutches. The boys had to adjust to living in a new place, with new schools where the lessons were given in their other language. The country they called home and the one they visited would swap places and remould their identities. And at the same time a day was coming when they would no longer have a mother and look for guidance and stability from a father who was grappling with his own overpowering grief. We would go from being a cross-cultural family of four to an expat family of three, and so cross not one border, but two.

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How did we set about making sure that the boys were not left displaced and traumatised by this conflation of extreme events? They depended, and still depend, on routine and familiarity to orient themselves. They struggle to communicate, so how would they cope with switching language. And from my point of view the crucial thing was to find a way of recognising when they were in trouble, since both of them find it daunting and difficult to communicate their emotions. The solutions I found, and the lessons I learned in the process, will be the focus of the next few blog posts.

Cause, consequence

Adam comes down for breakfast, smiling and bright as a button. He remembers something in his bedroom and dashes back up the stairs. Half a minute later I find him on the floor, distraught, face red and eyes swollen with tears.

I ask him what’s wrong. He points to a mug half-filled with water on the floor. “I didn’t drink my water.” Every night before he goes to sleep Adam drinks a mug of water in bed. It’s the last phase in a well-established night routine. Last night he must have been too tired to drink it, so it sat on the floor all night and when he woke up he must have knocked it over. Half the water is in the mug and the other half is seeping into the carpet in a neat ring.

“Do you want to drink your water, Adam?”

“Nooo! It needs to fill up!”

I go downstairs, fill the mug to the brim and tell him to come down and drink it.

“No! I can’t!” This is his standard response when he doesn’t know what to do. So I take the mug back up and put it on the radiator. This is no good either. He picks it up and puts it on the floor, on the exact spot beside his bed where it was before.

“Do you want to drink it now, Adam?”

“No,” he says and skips down the stairs to resume breakfast. The mug sits there until he’s left for school.

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A few weeks earlier we’re in the Ikea cafe, having meatballs and chips for lunch. It’s going well until Magteld filches one of the chips from my plate and pops it in her mouth. Euan is incensed. “You have to put the chip back!” he screams. She puts one of her own chips on my plate. But substituting a different chip isn’t what he means. He reaches into her mouth and tries to excavate the one that’s disappeared down her throat. No amount of explaining will convince him it can’t be done. He won’t give up until the plates are cleared and we’ve moved on from the table.

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We all remember those incidents when a favourite toy was damaged beyond repair and we still took it to our parents to fix, but these two incidents magnify that desire to undo mistakes to the point of intransigence. Adam didn’t want the water: he just wanted things to be put right. Euan was enraged by his mum’s refusal to undigest a chip. Do autistic children have more trouble than others understanding that sometimes there’s no going back, that not all loose threads can be re-ravelled?