My son does not know he is autistic. He doesn’t know what autism is, doesn’t know he is different and doesn’t know it is a life long condition that could define much of what happens to him in the future. And why should he? Though aged five, he is in many ways more like a three or four year old. Trying to explain something so complex seems not only inappropriate but also probably impossible. His relatives don’t understand it, so why would he? Come to think of it, do I really understand it? Would my son even begin to be able to grasp what it meant? And would we be able to get him to stand still long enough to explain it to him?
More importantly, there has simply never been a need for him to know. Watching him today, on a good day (no school and the freedom to do the things he wants to do), he is simply the most happy, carefree child you could hope to meet. His laughter is infectious and his sheer enthusiasm for life a joy to share. Let’s not forget that this is a child who can turn in a heartbeat into a little devil, but even at his most monstrous there is never a sense that being thrown a confusing label would in any way calm him down. My son does not know he is autistic, and that has always been fine.
I thought we’d have several more years before this became an issue. I knew that the day would come when it was important for him to know and understand that he was in some ways different to others. We would need to explain what autism was, how it was a part of who he was and how some of the things he did, said and felt were influenced by it. There would be lots to share about how he learnt, how he dealt with other people and why he found some things difficult. He would have questions, and I would have the answers. Or some of the answers. I would not be able to tell him why he was autistic. I’ll never understand why that has to be.
It’s not like it’s some sort of secret. We do not hold back from disclosing our son’s autism to people and we are certainly not ashamed, embarrassed or in some way reluctant for anyone to know. We do not worry about him being labelled negatively or becoming wrongly defined by knowledge of his condition. Understanding autism is central to understanding B and we have no problem with who knows. Because if they know, they can begin to understand. And the same applies to my boy. The day would come when it was the right time to tell him. My guess was around the age of seven or eight.
So when my son recently asked him mum, “Why do I have a helper at school?” we felt somewhat unprepared. He had never questioned his one to one support in school before- it had been a feature of school life pretty much since his first day. My son is not a child who pays much attention to others. I doubt he has ever looked around the classroom and thought, “Why is she only helping me?”
Upon hearing this, my wife felt that the time to tell him could be fast approaching. It would be the first of many questions she said, the first awakening of a curiosity and awareness of his school situation. The first awareness of his differences. I dismissed her concerns. “He’s not even six yet.” I argued, “Wait til he’s seven at least.”
We left it there, but my son did not. Last night, he turned to his brother and asked, “Do you have a helper at school?” followed by, “Why do I have a helper?” Then, to the sound of our heart’s breaking, he said “Am I difficult?”
“No son”, I said, “You’re special.” (what a loaded word that is). “It’s time.” said my wife, as she followed us into his bedroom. I felt a chill run up my spine and a lump form in my throat. Never mind my son being ready, I was not ready for this.
My wife was. She has been thinking carefully about this and getting some advice. But like my own feelings towards the matter, the advice was mixed. B’s key worker from Autism Outreach felt, like me, that he was too young to really know or understand what we were telling him. It would be meaningless and possibly not something he would be able to deal with appropriately. I have visions of him running around the school shouting, “I AM AUTISTIC!” and asking everyone he met if they were autistic. Recently, on ‘Britain’s Got Talent’ a young comedian joked about his disability. Understanding it was funny (but not really getting it) and hearing the word “disabled”, he decided to repeat it lots and laugh whenever he did so. He did so in the innocent belief that others would find it funny too. He wasn’t to know it was inappropriate and it was a passing fad. But I can’t help thinking of it when I consider telling him. I think he’s too young to expect him to be able to handle something like this, and Autism Outreach agree with me.
At least, some of them do. Two weeks ago, whilst on her parenting course (also run by Autism Outreach) my wife raised the issue of disclosure again. This time, the answer was different. They felt that any opportunity to talk about it was worth seizing upon, particularly if he had raised the issue himself. Their argument goes that if our child is bright enough, and aware enough to ask these questions, then we should not lie to him. We should be open about it and honest and we should get it out there. My son should grow up knowing about autism and knowing that it is nothing to be worried about. It should be a part of all our lives from as early as it is possible for him to know about it, because then it will not be an issue, it will just be our normality. As a result, he will quickly come to accept it and better understand his world. It will help us to help him make sense of things and it will mean we can answer difficult questions like, “Am I difficult.”
It’s a convincing argument. Sat there on his bed, my wife was ready to tell him there and then. But looking at my beautiful, innocent child, I simply could not let her. When we tell him, we will have turned a major corner. Some of that innocence will have been lost forever; our little boy will be changed forever. His perfect little bubble of happy, naive innocence will be burst. You have to let your kids grow up, I know, but how can I expose him to such things so early on in his life? Sensing my concern, my wife backed down. But we have promised to discuss it further.
So, do I tell him?