How much harder is it to parent an autistic child? My initial reaction is to shy away from this question, turning it around to ask ‘how much harder is it to be autistic?’ There are lots of reasons for this. Some of them are as follows.
I never want my son to get the feeling he was a burden or a problem. He is not. I also don’t want to give the impression that this is some kind of tragedy (perhaps because that is what I thought initially, even if only for a few horrific days).
Perhaps even more than that, I don’t want to live the kind of life, where I am thinking if we keep going and keep working and striving (plod plod plod) we might one day approach something that maybe looks a bit like normal – if you put it in the right light and kind of squint a bit. If I have the choice then I will choose accepting, embracing (and even celebrating) what is. It is not quite the same as saying it’s all fine, and it doesn’t rule out development and discovery. But it does save my sanity. I need to be happy now, and not live in an imaginary future that may never come. I want to have fun.
However, I also know that the mental and emotional, and physical health of the main people looking after an autistic child are crucial. If they are struggling, the child will struggle too. And it is harder. The fact that my (apparently) non-autistic 20 month old is an absolute breeze, has made me realise that. I push him around in his buggy and he just looks around at everything, quite content and taking it all in. This would have been unthinkable for Leo.
Number One hardest thing for me is other people (sorry other people). It is not so much the stares or negative comments – I have thankfully experienced very little of this, although I would like to take a moment to share my technique for dealing with it. I am not really into t-shirts or autism cards explaining the issues. Nothing against them, just not for me. Instead I calmly meet the gaze of the person staring at my child. It can take a little while for them to realise I am looking at them looking. I used to smile, but now I maintain a neutral expression. I am trying to say – I see you staring at my child. Now I am staring at you. Not very nice is it? It works for me, and diffuses my anger at the same time.
The bigger issue for me is the ‘all kids do that’ line. If you have an autistic child you will be very very familiar with it: well that’s true of any child. I want to say great, so autism doesn’t exist and I’m just making a bit of a fuss. You would not say to someone who has a parent with dementia well, we all forget things sometimes.
The all kids do that’ line is an utter dismissal of you and your child’s challenges, even if it comes from a well-intentioned place – and it usually does. You try again to explain why it is harder and it still doesn’t sound like very much, and you end up feeling bad because suddenly you realise you are trying to convince someone just how awful your kid is. So I would say that that is probably the number one reason why it is harder: the explaining. It is emotionally draining, especially when you feel you haven’t got your point across.
If you have a child who doesn’t sleep or a child who is violent to themsleves or others, that would probably take the top spot. I don’t have that, but the night terror episodes we had with Leo a few months ago were a reminder of how sleep deprivation can destroy you in just a few nights. Two in my case.
Number Three. The worry about the future – much as I try not to, and much as I want to live here and not dwell on the possible futures that await my son – it happens. The casual words of others, a photo where he I judge that he looks ‘different’, can set off a vision, a thought or even a dream that takes me there. All of the things that most parents (not necessarily correctly) assume their children will achieve or experience are not given or taken for granted. When you feel like this, even the presence of typically developing chidren in all their sophisticated cheekiness, can be painful.
Number Four. The feeling that your child is failing at childhood. I don’t actually believe that is true, but I feel at times that is the message. He has to be taught how to play, how to be a child. How to have imagination. To do all the things that other children find natural. He can’t enjoy funfairs or parties. He does not get invited to parties, but if he did the fallout from getting him through it would probably not be worth it. And in a way that is fine – he is not a party person, so what? But for mum and dad it can be very hard.
The other day my partner asked so do the mums at nursery not really talk to each other then? I had to explain that of course they do – there is a whole parallel universe of play dates and parties and bike rides that is going on that neither Leo or I have any part of. I have got used to it, but that is a huge deal in the life of a parent. Maybe others manage it better than I do. When I do start chatting with other parents I am slightly bemused by the things they talk about (themes for birthday parties?) and realise I can only talk confidently about statements, 1:1 supports and PECS book vs ipad apps.
The other day we were waiting outside nursery and a few of the children were running around chasing each other. Leo loves chasing games. I said you are watching the chasing. Do you want to play too? He nodded (nodding is hard for him, so a nod means a lot). He started to run round, but in the wrong direction…and instsantly crashed into a little girl who fell, cried and went to her mother for comfort, while I apologised and got Leo to sign ‘sorry’. The mums then agreed that running round was too dangerous, and told their kids not to do it any more. Leo continued to run round on his own, while I tried in vain to get him to stop, until the doors opened. I don’t even think anyone thought it was a big deal, or that Leo was a horrible boy or anything like that. But I was upset and it affected my day even though I thought I should just forget it. Since then, the chasing games have returned, but Leo has not joined in.
But I think that goes some way to explaining why it is harder. You have to deal with lots of little things which on their own are not a big deal, but altogether they use up a lot of energy.
Here are a few of them, off the top of my head. We have to work out how to fund the ipad app Leo needs in order to communicate – and how to get the assessment that will advise on which app is right for him. We have to read through 30 pages of his statement in order to know what should be in place for him. We have to collect him 5 minutes early as his distress is too great when waiting to come home. We have to rephrase everything to not contain the word no, as this causes him to crumple (yes I know he has to learn, but I can tell you he is not ready yet). He finds yes/no questions difficult to answer, so we don’t know if he has communicated what he intended to communicate. Open questions are impossible as he can’t speak, and his commuication devices do not allow for sophisticated answers (yet). We have to deal with his inability to accept help. To guess why he is crying. We have to deal with the confusion caused when he does not respond to well-meaning adults in the expected manner. We have meetings and phonecalls and appointments, which are mostly about all the things Leo can’t do. We listen to him apparently come out with a word, only to be unable to retrieve it again. We can and do deal with all this. But dealing powers are not infinite and it makes you vulnerable to overreacting when something minor does not go the way you hoped.
Safety should probably be higher than number five, but for me that issue is not quite as overwhelming as it used to be. Great improvements in Leo’s ability to respond to his name and his own desire to check where I am, have made outings a little easier. Nevertheless, he finds it hard to walk. He has two modes. Running and stopping. Not a lot of walking goes on, and it doesn’t feel safe. You may want to tell me all kids are like that, but a quick glance around and I am amazed at the way other kids are moving. Leo also seems to have an instinct that leads him to bump into people rather than avoid them (see incident above) and he falls over about once every 2 minutes.
Going into town is a big deal. The irony is that Leo loves walking (running) into town and often asks to go (using pictures). My heart sinks every time. It is so much easier when he isn’t there. But when I do the sensible thing go without him, while he is at nursery, it feels horrible. Not only do I know how much he would love to go, but I miss him. Even how easy it is makes me sad.
It is no good denying it is not harder. It is. I have days when I realise I am mentally and physically bracing against what the day will bring. It could so easily turn into a spiral of misery that makes everything harder. The basic building blocks of childhood do not always come easily and it can be hard to have fun in simple ways. Leo loves to bake, but the whole process causes such distress that it is very hard to see how it is fun for him. The irony is that you can get so caught up in problem-solving mode that you are in danger of missing the fun that was right in front of you. When he does find something that amuses him, he has the ability to extract the maximum amount of enjoyment out of it. The fun from a pair of too-big wellies lasted a whole afternoon – no distress whatsoever.