I have lived with Joe for fifteen years, and for every day of those fifteen years, autism has been part of our lives. For every day of those fifteen years, we have faced challenges, adapted, evolved and grown. Together we have explored strategy after strategy; the odd one was ground breaking, some worked for a few weeks, most failed. We focused on the things that did work, the things that have helped Joe, and we have gone with them, developing, building, always changing. Living with Joe now is very different to how it used to be, partly as he is growing, and partly as we are learning. But no matter how many coping strategies Joe learns, no matter how much we are able to mitigate effects, he will always be autistic. And that is the problem I have as a parent. The more I support him, and find others who can help him find ways to cope with his autism, the harder it is for me to convince people that Joe needs support, because, “Well, he doesn’t look autistic, does he?”
It’s rare to deal with the same professionals for more than a couple of years because of the turnaround of personnel within the system. Very few people will get to know Joe, and so when decisions have to be made, they want evidence of how Joe is now, what support he needs at that time. When Joe is supported well, he copes admirably, but what people seem unable to grasp is that he is not ‘better’. Joe is still autistic, and if that support is removed, he will end up in crisis again. In the windows that Joe has been settled, he is able to begin to develop socially and academically, but these periods in his life have been short-lived because just as he begins to find his feet he is deemed as not being a priority for support, and his whole world crashes down around him again.
I suppose all this is boiling around in my head at the moment because soon there will be a meeting about Joe’s placement from September onwards. He’s just started GCSE’s, but I have to think ahead through A-levels to further education because, from experience, although three years seems a long time away, it can take 18 months just to get a report written and signed.
I think this need to keep talking about a child’s difficulties is one of the hardest parts of being the parent of a child with a hidden disability. It’s so hard to have to convince someone your child has problems before you can even begin to talk about the solution. In fact, often it is so hard to convince other people that your child needs support that you begin to think that it is you as a parent that is the problem. When Joe was little, I would finally dare to voice something at a toddler group only to hear that Fred did that or Ellie was like that, and I used to wonder why I was so completely inadequate – other parents were coping with children like Joe so why couldn’t I? It took me a long time to realise that each parent was coping infrequently with one of the things I was struggling with; I was drowning under the collective struggles of most parents in the room – every day, every hour. But having to convince someone else that there is a problem is soul destroying. You have to list all the things that your child struggles with, describe all their difficulties, expose your own inability to cope… and some people will still remain unconvinced – they will still just see a problem at the parent level. I think that is partly why Joe’s diagnosis at three was such a relief – someone official had said there was a difficulty. It didn’t make help happen, it just made me feel better about demanding it.
Joe is really successful at hiding his autism a lot of the time and I have such admiration for the way he does it. A simple example: as a child, Joe could not look at a picture and tell me whether the person in the picture was a boy or a girl. He did not see the things I unconsciously use to make a decision, and instead, when we met new people, he would always ask. He gradually stopped asking, but every now and then, as he grew older I was astounded to realise he still couldn’t tell males from females because he would ask about any new people we met. It took me a while to understand that the reason he asked less often was that as he grew older he encountered new people less frequently, and the reason I didn’t notice he couldn’t tell the difference between a girl and boy on sight was that he learned the sex of every single person he met, so knew whether to say he or she. Can he work out the sex of new people he meets now? I expect so, though I doubt he uses the same cues as I do to tell the gender of a person. Joe has a friend who now identifies as the opposite sex to which they were born. I frequently have to take my foot out of my mouth because I am hopeless and get the gender pronoun wrong so often. Joe has never messed up, never made a mistake, not once – he just swapped the label in his head. The way his brain works is astounding. It has to put so much more effort into doing so many of the social things I do without even realising I am doing them. And yet he never gives up.
I want to celebrate Joe’s amazing achievements, the incredible lengths he goes to every day in order to fit in with a society that, on the whole, will never appreciate the effort it takes him. I want to spend my time shouting about the distance we have travelled since Joe drew pictures of me with no facial features, (but fantastic knee caps!). All too often, my job is still to keep Joe’s difficulties in the forefront so people can’t overlook them – because that is when the problems start. What a rubbish job for a parent. There have been brief spells where other people have taken the burden, and at those points I have been able to sit back, enjoy the positive comments and celebrate Joe’s individuality, but mostly, when people say he is doing well, I have to explain – it’s only because of this or well, yes he is doing that, but the stress of doing that that has a knock on effect at home.
And now, for the next meeting, I’ve been asked, again, to write about Joe. Somehow it’s worse on paper. I dread that Joe could see it – and he has every right to ask what has been written about him. All I want to do is encourage, explain things that need to change as and when Joe is ready to take the next thing on board. Joe sees the world in a very black and white way; if he reads a report detailing all the things he struggles with, things I have to highlight in order for him to get the support he needs, what will that do to our relationship? Sometimes there is little voice inside me asking, ‘Can I resign, please?’ Of course I can’t resign, but it is exhausting – failure is not an option.
Sometimes I wonder if I had not spent the last fifteen years fighting for Joe, would he have got the support he needed earlier because his presentation of autism would have been more extreme? Then the little voice inside me asks, ‘Should I resign?’
I go for a walk in the wood to clear my head. There are some amazing trees up there, and some of the trees in the wood haven’t had an easy time of it; they have not just grown up straight, they’ve had to bend and twist to make it to their place in the canopy. But they have made it eventually and what is more, these are the trees that stand out from the crowd, these are the trees that have character, these are the trees that make the wood special. I see Joe in these trees. Resignation is not an option.