Wrong though it may be, I find a good coping strategy as an autism parent is to avoid other people’s children. It’s not practical, I know, and probably impedes our progression towards complete acceptance and embracing of autism, but for now it helps. I was reminded recently of this by The Girl in the Park incident, as I’ve come to know it.
Readers may recognise the scenario. A child of a similar age approached B near the swings and began to make conversation, or at least tried to. It started well. B told her his name, told her his age (“I’m four too!” she excitedly replied) and then… well, it sort of petered out. The girl tried to extend the hand of innocent childhood friendship, but this is difficult when the child in question isn’t really looking at you, does not appear to be paying attention and won’t talk back. ‘Rude bugger’, she probably thought, if four year old girls can think things like that. I watched this happen from a nearby bench, not exactly dispassionately but with a wry smile of knowingness as the scene unfolded in exactly the way I thought it would. And then I spotted my wife, also watching it from the other side of the playground. At that moment I knew exactly what was going through her mind and what she was feeling. Perhaps it was the sadness behind her smile that gave it away, but it was obvious that it was a painful thing for her to watch.
I think we’re probably in different places emotionally as far as this is concerned. My ability to brush it aside probably stems from the fact that I don’t really have to deal with it all that often. My wife, on the other hand, is faced every day by other people’s children in the school playground. It must be hard to watch them go about their perfectly ordinary play with their perfectly ordinary speech, understanding and communication. In our home, the only comparative measure is B’s brother who, being older, shines less of a light on the delays my son has. In the playground, those delays are much more painfully obvious.
Before B was diagnosed, back when the ‘a’ word was a vague notion we occasionally dared to acknowledge, I would take my oldest son swimming. There I would bump into an old school friend. She would drag along to the poolside her youngest child, the same age as B. I remember thinking, ‘there is no way I could safely bring B here’. I would watch her child as he chatted away, asked questions, sat still and managed to avoid a soaking. It was uncomfortable viewing. Try as you might to tell yourself ‘they’re all different’, it is difficult to deny that your child is not doing what others his age are. I suppose that, as parents, we all compare our children. I remember taking great pride in my oldest son getting his first tooth, as if it were some sort of achievement. I also remember the anxiety of thinking ‘when will he walk?’ Parenting becomes like an unspoken competition as you proudly report the developmental milestones to any one who will listen. I’m sure no one shares these (literally) first steps in order to gloat, but when your child isn’t yet there, it can be difficult not to feel a pang of discomfort. This comes down to our insecurities and our fear of a delay impairment. It is a natural part of being a parent and our children all get there more or less at the right time. Unless they don’t.
When a friend says their child is: (take your pick) walking, talking, writing their name, wiping their own arse etc, and you know yours isn’t, you feel the ground beneath your feet start to wobble. With autism, that wobble becomes a trap door through which you fall. Your worst fears are confirmed. From there on, you know that it will always be a knife in the heart to be around typically developing children. Welcome to a world of stares in the playground, apologetic explanations to strangers and indignant rage at the inability of others to understand. The result is that you stop seeing friends and their lovely children, you even stop visiting relatives with children. You hide. We’ve lost a few people along the way.
Thankfully, we have found comfort and solace in the company of parents and children who do understand. For the last twelve months we have attended a couple of groups for either children on the autistic spectrum or children with special needs of other kinds. For anyone reading who recognises our situation, I would urge you to seek out local support groups. I was initially reluctant, put off by the idea of a happy clappy ’support’ group or ‘autism community’. I did not feel like I belonged to such groups, like I was somehow just ‘visiting’ autism or that there had been some sort of mix up and we didn’t really belong there. I was highly anxious about our first visit, scared even. You get past that though.
The parents and children at these groups are inspiring. You would be hard pushed to find more accepting, welcoming and non-judgemental people. The opportunity to talk to other parents and get recognition, practical advice and support has been of great value. Opportunities for days out have cropped up and various activities have been available to keep the kids amused during holiday time. The groups are a very good source of finding out what ‘benefits’ are available from the local authority. I would not have known about getting extra refuse sacks, the Children’s Disability services, Radar keys and more. The positivity that radiates from the parents and helpers is, to be honest, slightly baffling. I don’t know where it comes from or how they got there, but being around them makes me look forward to getting there myself.
And yet, even here, there lingers a feeling of discomfort, displacement and a sense of not fitting in. Ironically, B is amongst the most high functioning of the children at the groups we’ve attended. His delays, impairments and needs are not as severe as many of the children we encounter. This puts your life in perspective and is a wake up call for those moments when I feel overwhelmed. Really, our problems (and B’s) are very different to those faced by the people at these groups. I sometimes feel like a complete charlatan when I’m there.
Is this what high functioning autism will always be like? A sense of not fitting in, of not quite belonging here, there or anywhere? Of course, I am projecting my experiences and feelings onto what I imagine the future holds for my son. I try to keep my eyes closed to what the future holds for B, but if I allow myself to squint at it, I see a boy who will struggle to fit in and find his place in the world, just as we do now.
On a more positive note, B has recently been making an effort to reach out to others in his class. He may find it difficult to make that contact- unfairly difficult- but at least he’s trying. At least he wants to. Without doubt this is a promising and welcome development. We should learn from our son’s example and stop shying away from others. If we want our son to be accepted and his differences understood and embraced, then perhaps it is time to stop hiding away ourselves.