“Mummy, some boys came and played trains with me today while I was playing with Louise.”
“Oh, that’s great Joe,” I say with a lifting heart, “Did you take some toy engines out into the playground with you?”
“No. Me and Louise were playing with our dolls near the drain, and the boys kept running round saying “Puff, puff, puff”. It was fun.”
Reality trickles in, I feel the familiar ache. Those little boys weren’t playing trains. But I can console myself. Joe is oblivious to what is going on here; a very minor upside of his autism is that he is often unaware when people are being unkind to him. Sarcasm passes him by and non-literal phrases merely confuse him.
Time moves on. Children quickly learn that Joe has certain triggers that make him react disruptively. Now Joe’s lack of perception begins to act against him – he walks into the trap of their goading every time. It results in exclusions from school and for Joe, feelings of being marginalised without understanding the reason.
Gradually he matures. He begins to ask telling questions, “Is that sarcasm?”, “Are you being serious?, What does your face mean?”, and to express frustration, “I don’t understand humans!” But he still reacts instinctively when he finds people’s behaviour challenging and doesn’t accept that any negative consequences of his actions can be attributed to him.
Of course, we all go through these stages, and continue to deal with these issues throughout our lives, but my younger children are much further along the track than Joe. And now Joe has reached the semi-adult environment of College where, to be fair, he stands out from the crowd. He has his own fashion, his own particular way of talking (sounding a little, at times, like a Victorian novel) and his own, often loud, take on life. He is bound to come in for some stick, and I’m sure some of it is just friendly banter, but some of it is not.
I find myself lost again. I hurt for Joe. I feel resentment towards the people who mete out his persecution. I remember myself the humiliation of being shoved to the ground at secondary school and having a bike pushed over me, having chairs pulled out from under me as I went to sit down, and arriving in a classroom to find the place I normally sat in removed. I still remember comments people made to me and on bad days they jeer at me from the past. I know it does shape your life, so how do I deal with it for Joe when he is far more emotionally vulnerable than I was at his age.
I wonder how to help him through. My first reaction is to feel anger towards the people who are getting to Joe. But the realistic person in me knows there will be another side to the story too; Joe can come across as very domineering and has, as part of his autism, habits which drive me up the wall. And often, there is the story of the person who is making Joe feel ‘got at’. When I was a teenager, I had a reputation of not swearing at school. It seemed to irritate some people – maybe it gave them the impression I was trying to be better than them, I don’t know, but they cornered me in a confined space and wouldn’t let me go until I had uttered a swear word. I remember the minutes passing by and eventually realising that I wasn’t going anywhere until I did. But, instead of meekly complying with their demand, I swore at them, my anger and humiliation spilling out. I remember registering the irony at the hurt in their eyes, one of them following me as I ran away, wondering if I was upset with them… Years later, I am not as convinced as I was then that these were horrible people. There was a lot going on with them too – I just didn’t realise it at the time.
So, getting angry with the people involved is not the way to go. When Joe was younger, there would be attempts made to separate him from the people upsetting him, though eventually, it seemed to end with Joe being moved. Should I advise Joe to tell someone about the teasing at College; should I tell someone? In this situation I think the answer is yes, although some of the things that have been said to Joe he would find too embarrassing to talk about or to have repeated in respect to himself and I can definitely understand that. But I am concerned. Concerned that if it gets out of hand, Joe could lose this opportunity either through him losing his temper or by simply deciding College is not for him. I hurt for him; it fills me with sadness that he is frequently singled out in a negative way, but I have reached the point when I have to accept that this is his life, that this is an obstacle he will always come up against. Joe is close to entering the adult world, I have to be realistic; I cannot stop Joe having to deal with people who upset him. Instead, I have to teach him ways to be resilient; ways to cope with and ways to perhaps limit the negative comments he receives. I have tried to help him with these skills throughout his life obviously, but now, it’s serious.
Joe and I have a strange relationship. I think it is one of mutual respect rather than emotion; we are bound together, but it is only I that supplies the heart-on-my-sleeve. I probably have to be more critical with Joe than I am with my other children because I know that they will self-evaluate once out of a situation whereas Joe will not. Helping Joe become more resilient to other people involves asking him to see himself from their point of view, or to see life from their point of view, something his autistic brain finds nigh-on impossible. It’s so painful to have to explain to Joe why, for example, his habit of whistling the same tune over and over again, day after day, could upset someone; I cry inside when I see his expression of sad concentration. But I would rather it was me explaining this to him than anyone else, I want to try and spare him the cruel reverberation of other people’s words, or the humiliation I experienced at school. I want him to have a chance to build up the resilience I have never been able to develop. My other children are teased at school, and I hate it, but there is not the kind of responsibility attached to it as there is with Joe. I have the ability to connect on an emotional level to support my other children, the ability to reach out physically and comfort them, the ability to talk about feelings with the assurance that they have a good level of understanding of the way they feel. With Joe, it is different and we end up in discussions of brutal, factual honesty both ways. It is exhausting for both of us and probably as painful for him as it is for me, though perhaps perceived differently. I struggle with the responsibility of being Mum to an autistic young man.
So again, we resort to our trees. Walking and working in the wood helps; it brings perspective back to life for Joe and I in different ways. It is a place that other people don’t follow, a place un-enclosed that does not judge or tease or criticise; here we can begin our search for resilience.