He’s been on edge all day. I’m not entirely sure why. Maybe it’s because it’s half term and it’s a culmination of him having held it together at school for six weeks and, now, being in the comfort of home, the pressure valve has been released. The steam is coming out, but it’s yet to boil.
I have a feeling I know what it’s really about, though, but he denies it when I ask.
“Noooooo!” he shouts. But he can’t tell me what’s wrong either. “I’m not worried about anything,” he insists. But, clearly, he is.
He’s gone into writing lists mode (football team sheets and formations). The next minute he’s ripping pieces of paper to shreds, leaving a trail of torn scraps around the house.
He bounces around, mainly into me. He clambers over me. He shuts the dishwasher door as I’m trying to load it. Anything to stop me doing what I’m doing. It appears – and certainly feels – as if he is trying to irritate me, but really it’s a cry for help.
He grabs the end of the toilet roll and runs with it around the house like he’s the Andrex puppy. He pulls clothes out of the wardrobe, littering the floor with them. He spits into his hand and then wipes it over my sleeve.
Bedtime degenerates into a long, drawn out affair, as his inability to get into bed eats into his reading time. He eventually gets under the covers at two minutes to eight. Eight o’clock is his reading cut-off time. It’s taken 40 minutes to get to this stage.
“You are not stopping. You have to read for 40 minutes.”
“No. You took 40 minutes to get into bed. That doesn’t mean I read for 40 minutes after you eventually decide to do so.”
I leave the room.
Surprisingly, he doesn’t get out of bed and follow me around the house, demanding I come back. He just sits there, pretend-crying incessantly. Maybe now, we’ll get to the bottom of it.
I go back to his room.
“Is this about Grandpa Bill, Jo and [your cousin] Daphne coming tomorrow?”
“Why? You like them don’t you? And you want to see Daphne.”
“So what is it then?”
“Is it because there will be too many people in the house?”
We talk it through. “A problem shared is a problem halved,” I say. “It’s better to talk about things rather than smack me isn’t it?”
“Do you feel better for talking about it?” I enquire.
He thinks about it. “I feel about 2% better,” he announces.
It’s a start I suppose.
Two’s a crowd
He has this aversion to too many people being in the house. One extra is fine, two at an absolute push. Three is very much an invasion.
We can manage it, though. He can stay in his room if he wants to and people can go up to see him individually or until he has become accustomed to their presence and chooses to interact on his own terms.
Visitors have also learned not to overstay their welcome or they accept being manoeuvred out of the door before it becomes too much for him.
Needless to say, he was fine once they arrived and he played happily with his cousin. Indeed, he was upset when they had to leave.
It was just the build up to their arrival, the fact that he had no control over what might happen once they got here. The extra anxiety caused if they don’t arrive at the appointed time.
Anxiety is a strange beast. We all suffer from it. Just some people experience it at a much higher level than others and find it more difficult to manage. Its effects can be anywhere between preventing sufferers doing something they really want to do, to complete withdrawal, to anger and frustration expressed verbally and/or physically.
Signs that DS1 is anxious manifest themselves in different ways. If he reverts to watching the same TV programme repeatedly or reading the same book again and again – often these are shows or books below his intellectual level – then this is a sure sign that he is anxious, and he is seeking comfort in something that he knows.
Other signs include not being able to keep still and seeking sensory pressure – hence, the smacking and jumping on me, among other things.
Chewing is another indication that things aren’t right. He often used to come home from school with a sleeve of his jumper (in the days that he wore a jumper) soaking wet from where he had been chewing on it throughout the day.
This ‘coping mechanism’ has lessened recently. However, last year, as he waited by the side of the stage to take part in the school pantomime, he started chewing on the tinsel that formed part of his costume, to alleviate his tension.
Naturally, his teacher removed the tinsel from him because she didn’t want him to choke on it. He shut down completely, pushed himself into a corner of the hall, his head facing away from everyone, and steadfastly refused to take part.
He has also been known to exercise the classic autistic trait of lining objects up in rows. I once found the contents of our cutlery drawer beautifully set out in a line on the lounge floor.
He was incandescent when I tried to put them away.
“You can’t tidy them up. That is where they belong,” he insisted. And so, there they remained for a couple of days until the moment had passed and we could return them to their rightful place.
On the subject of tidying, once, when I finally admitted defeat that he was not going to play any active part in helping me clean his room, I informed him – in no uncertain terms – that I would tidy it while he was at school so that I could get a hoover through the door. He was mortified.
“You can’t clean my room,” he pleaded, implying he knew where everything was and each item had a specific place on the carpet.
Eventually, realising the inevitability of the situation, he took himself off armed with a piece of paper and a pen.
He returned a while later and presented me with a map of where everything was on the floor so that I could return the mess to exactly how it was once the room had been cleaned.
I didn’t… but he did. Still, at least I managed to get the hoover over the border.
His fears are, to us – as they often are with many people – irrational. For example, I know someone that is scared of bananas – she runs away if one comes anywhere near her. And she’s not autistic. Strange maybe, but not autistic.
The littlest thing can send him into blind panic. A couple of years ago I needed to buy a new car, and this sent him into a tailspin. Knowing he would be worried about it, I (in hindsight, unwisely) involved him in the process. I took him with me as I looked around the garages and went on test drives.
But when I found the one I wanted DS1 didn’t buy into the choice – it was (deliberately) the same make – which was good – but it wasn’t the same colour. This was not good.
I left it for a few days before explaining to him that this was the one I was going to buy and the only thing that was different was it was silver instead of black.
“But what if I don’t recognise it when I’m going to get in the car?” he quivered.
“That’s not a problem is it,” I answered. “You’ll always be with me if we are going to get in the car won’t you.”
The penny dropped. The problem solved. The anxiety receded.
Another unexpected fear manifested itself when he was in Year 1. He started to worry (on a nightly basis) about going to junior school. Understandable, of course, but this, at the time, was still a couple of years away.
When I dug deeper into what was really troubling him about the transition he admitted he was scared about going because everyone at the school was bigger than him.
“But you will have grown by then won’t you, so you will be the same size as the boys who are at that school now.”
This temporarily appeased him, but then he took to worrying about how much bigger people at university were than him.
Again, I had to reassure him that he would be a lot older and bigger himself by then. And anyway we didn’t need to worry about university just yet – he was only six!
First among equals
Sometimes the solution to an anxiety issue can cause further panic. In infant school, he found lining up at the end of the day to get his coat a major issue. The noise and the amount of people milling about in one place were too much for him and he took to smacking classmates, pushing and generally getting agitated.
In consultation with his teacher, it was decided we would come into the school a few minutes early and pick him up from the office, where he would be waiting with his coat on, thus avoiding the end-of-day melee.
“But why are you picking me up early?” he asked.
We explained the reasoning. But he wouldn’t accept this as a problem. As far as he was concerned he was being singled out as being different, something he very much rails against. So, it was back to the drawing board.
The solution was to allow him to lead the class out of the classroom so that he could get his coat first. The teacher would then hold his hand and together they would lead the line out of the doors and into the playground. Not only did this reduce his anxiety, it gave him that sense of control, of being in charge (without actually have the responsibility of being in charge) – a feeling that he very much needs.
Although this practice is not actioned per se at junior school – he seems to cope much better with lining up now – he usually bursts out of the door first at home time, charges towards me at breakneck speed and launches himself into me, before scuttling off to be the first to collect his scooter from the bike racks.
Meanwhile, I check my body for bruises.