Thursday afternoon, and I am feeling rather pleased with myself. Following a training day at work, we have been let out early, meaning that for once, I can do the school run and pick the boys up at 3.30. I can’t wait to see the surprised look on their faces. “Daddy! You’re here!” they will cry with delight, as they come racing over and leap into my arms. Other parents in the playground will look on, smiling, at this perfect tableaux of father/son love. I’ve been looking forward to it all day.
The bell rings, and out spill the children. Mine are amongst the last out, prompting me to worry about whether I am standing in the right place or whether I’ve missed them (my wife later points out that they are always last out. Why am I not surprised by this?) Eventually, B materialises, flanked by his TA. A big smile spreads across my face, and I wait for his in return.
“Where’s Grandad?” he asks. Grandad normally picks him up on this day. “Grandad’s not here today, I thought I’d…” I begin to explain. My words are drowned out by my son’s piercing scream and an outburst of sobbing protestation. “No! Get Grandad! It’s Grandad’s turn!” he screams. Other parents in the playground look on, aghast. B’s TA gives me a pitying look that cuts like a knife.
Then his brother appears. “What are you doing here?” he asks, unhelpfully.
Later, Grandad will swell with pride at his popularity and the kids’ disappointment at not seeing him. There’s certainly an element of this in my son’s reaction to seeing me, but I think it’s about more than that. For my son, seeing me there represented change. It was not part of the plan, not what he expected. When you are autistic, this is not a good thing. Welcome to the rigidity of the autistic mind.
At first, we thought this particular characteristic of autism did not apply to our son. “He’s perfectly okay with change” we would say, and to a large extent it was true. He coped with all sorts of unplanned, unexpected twists and turns in his everyday life. We would often spring things on the boys or announce a change of plan. As difficult as my son’s behaviour was, he didn’t have a problem with a change to the advertised schedule. He coped when we redecorated his bedroom and when we changed the living room furniture. Last week, a whopping great Christmas tree appeared in the living room and it bothered him not one bit.
But perhaps we were unable to see things as they really were. In truth, B’s life was, and always has been, very structured and settled. That’s what a good parent does, isn’t it- provide a stable, reliable routine for their child. B had regular meals and mealtimes, bathtime and bedtime. No alarms and no surprises. At home, his difficulty with change was less apparent because nothing much did change. It soon became clear that we were very wrong to think he was not resistant to change. Variety, it transpired, was not the spice of our son’s life.
Earlier this week, I told my wife I intended to write about B’s difficulty coping with change. She told me about the first time she realised just how fixed he could be in his thinking and the effect it could have.
It was during a Speech and Language Therapy session. The previous week had gone well and he had liked the group session and the activities they did. But that was the problem. B had a fixed idea of what the sessions entailed, and was expecting the same thing again. When he got there, the room was the same, the therapists were the same and the same children were there. The schedule, however, was not the same. Cue meltdown. Cue my son being dragged into the lift kicking and screaming, the session abandoned as far as he was concerned. He simply could not cope with the fact that it was different. He could not adapt and he could not allow himself to experience something that did not match his expectations.
My wife has this to say about the experience: “It hit me like a shovel in the face. At that moment I saw autism in everything that he did. There was our little autistic child who could not speak, unable to cope with the slightest of changes. It was like he had been branded with autism on his forehead, and there was no going back.”
My wife has never told me this story before. She has carried it around without ever being able to tell me, and as she told me earlier this week, she cried. We need to talk more.
I found the term ‘Rigidity’ in a book called ‘Parenting a child with Asperger syndrome’ by Brenda Boyd. With apologies to Brenda, I’d like to share some of the points she makes here. The main point of her chapter on rigidity is that ‘people with Asperger Syndrome find it very hard to be flexible. They can develop a very rigid attitude to many aspects of life.’ She goes on to describe how, typically, a child can be stubborn, obsessive, pedantic and, as a result, the child needs to feel in control, sees things in black and white, likes to establish rituals and finds it difficult to cope with change.
This is all so true. In B’s case, it’s not so much that he is resistant to change, more that he has very fixed ideas in his mind of how things should be. I’m not sure there’s a difference between those two things, but he is open to new experiences. It’s just that, once he experiences it, that’s how it should be. It can’t change, just like the SALT session couldn’t change. As he gets older, this happens more frequently. For example, a new bedtime story (made up by Mum or Dad) is usually perfectly acceptable, and if he likes it, it will join his mental library of stories. Beware however, of deviating from the story by a single detail the following evening. He will not be a happy child. There will be blood. Okay, not blood, but a bloody screaming fit. And if it’s a story that the other parent conceived, you’re in real trouble. Perhaps all this explains why, of the two hundred or so books on his shelves, he chooses the same four or five to read every night.
My wife, more than anyone, knows how much this desire for sameness can affect my boy. The school run in the morning is fraught with dangerous pitfalls that can send my boy’s day spiralling off course. For a while it was the Nintendo DS in the playground that was the problem. Each day B would get to school and watch the same boys, sat in the same place, playing the same DS games. If they were late, the boys weren’t there or there was a slightest difference in detail, he would explode. The end of the day is equally difficult, as I found out. My wife has been known to, having picked him up, return to school and do the whole thing again because the way they left was ‘not right’.
I have much more to share about the subject of rigidity and how it affects my boy. I hope you’ll join me next week when I continue to post about this. As I write, B is throwing a wobbler because ‘Strictly Come Dancing’ has messed with its formula and the contestants are performing two dances instead of the usual one. What are the BBC playing at, messing with our minds like this? Wasn’t last week’s ‘dance fusion’ mash-up enough of an up-turning of the apple cart? I should write and complain to Points of View (does it still exist?). Meanwhile, my son has locked himself in the kitchen.
Time to go and be Dad. Hopefully he’ll make do with me this time! I’m not sure Grandad wants to be dragged over here on a Saturday night, even if he is number one choice for the school run!