True Transformations: April 2014

As a parent to a son who is autistic I wanted to write something for WAAD.

At first I wanted to write solely about the struggle and pain this disability causes not only for the sufferer, but also for the family of the sufferer. However, there is beauty in all things and autism is no different, so instead I'm going to write from a unique view point and hopefully this will help raise awareness of autism and what it can be like to live with someone who has it.

You see, every cloud has a silver lining. I honestly wouldn't change a thing about my son. Yes, I wish life was easier for both of us, but in a way, it wouldn't be my son if that was the case. He is probably my greatest teacher and I owe him a lot for that.

Photo credit Andreanavarro33 DeviantArt

From day one my son never slept, as most people with autism don't, due to the amount of data their senses receive constantly, it's nigh impossible to sleep. I would pace up and down my mum and dads hallway with him trying to calm him down and this would continue through to the next day and night and so on...there is no sleep in him. Even now. As a lover of sleep this has always been tricky for me to deal with. So, I could focus on how tired it made us and the exhaustion on the walks to nursery and then on to work, but instead I'm going to tell you the good bit...nothing will bond you and your child more than going through the same thing together - even if that 'thing' is not sleeping. Not to mention we were spending pretty much double the time together, if not more, than other parents were with their children. I'm not taking away from other parents here - if we could have slept we would have done too. It's just if you don't look for the good in these situations, you will go insane.

As a single parent this meant I really was spending all my time with him, but there's no-one I would have rather spent that time with.

Anyone with an autistic child will know that going public places is often a challenge. As the disability is 'invisible' and the overload on the childs' senses and the lack of predictability can trigger a trauma in them, they're often perceived by people as being 'naughty'. Cue plenty of tutting and every child rearing expert known to man giving you advice on where you're going wrong. Well, I just love this! A chance to have a reasoned debate on the challenging behaviours of autism and the lack of understanding from the general public. Fab! A few sentences later and the 'experts' disappear with their tail between their legs. Tut.

Likewise, whilst most kids run wild at parties, stuff themselves and make themselves sick, you'll usually find an autistic child will be hiding under the table with their hands over their ears and wishing it would hurry up and end. OK, so this feels sad, they're missing out on childhood. However, on the plus side you never have to teach them how to act dignified at raucous parties - it's sort of something they can already see and do. A strange kind of inbuilt maturity. The time comes when your child no longer gets invited to the parties. This is the best thing of all, as in all honesty, would you want your child mixing with children who are being taught to be unaccepting in such a way? Where's the lesson of humility and togetherness? And at least your child doesn't have to be forced to go into what is actually a scary environment for them.

You have to fight to keep your autistic child a part of every day life. You can't let them slip away and tune out, though they want to do this. This is why it is so important to raise awareness to make every day life easier to be a part of, instead of it being easier to turn and run.

Where as food is normally a pleasure for most, it's frankly, a minefield for people with autism. They're generally extra sensitive and like to have things 'just so' in this department - as in, cooked in a certain way and served a particular way and maybe grouped in a specific way. Jamie Oliver would struggle to please them and Gordon Ramsey would implode! What I would say about this, is that it's a great lesson in gratitude. How easy life is when you'll eat 'anything' and all food is a treat. Nothing will teach you a new style of cooking quite like autism. It provides a new way of viewing food, that I find artistic, but a lot would find annoying. My son is becoming creative with food and I'm proud that he is finding a way through his sensitivities, even though he still has them.

Don't even start me on schooling! No-one is to blame here, it's a combination of complete lack of understanding (frankly, a course won't teach you about autism) and a lack of both resources and the freedom to do anything about it. It's frustrating and unfortunately tempers do spill over from all sides. They just keep trying to force the round peg into the square hole, because they're certain that'll get results. What they don't seem to know is that the round peg will never be a square peg and nor should it. Results don't come and chaos ensues and still they don't listen to the people who know all about round pegs - they're too busy telling them about the square holes and the results the square pegs are getting. Somewhere amongst the out and out shouting to be heard, a child, a human being, who happens to be born a round peg, gets lost and so too does their education and youth. If this isn't a travesty for the world as a whole, I don't know what is. Still, you get a chance to admire the beauty of the round peg in its round hole at home with your depressed suspended child, while the school buys themselves time to figure out how to squeeze the round peg into a square hole.

'Friends' come and go as they give up on getting to know the person with autism. In a busy world where fitting in and convenience can be a priority, your child will have no-one on their side. The 'friends' don't understand them, they're not taught to understand them and sometimes they don't even WANT to understand them. Autism becomes the only thing your child knows and experiences - alone - me my disability and I. It's hard for it not to start to define them and you. Like a vacuum sucking you both into a dark void of endless resistance and issues. Every time you find a solution for one thing, a million more appear. You're both tired, you want a day off, but autism doesn't rest and nor can you.

You'd hope it would get easier as they get older, but it gets harder. No longer under the wonderful watchful eye of Child And Adolescent Mental Health Services (CAMHS) you are back to being a round peg in a system set up for square pegs. Out on a limb with just your disability for comfort. Your life passes by in a cruel solid routine of not going out, not able to work, can't cope with college and not able to make plans. Meanwhile, the rest of the world glides by in haze of acceptance.

My son and I have been through an awful lot, all because he was born as a round peg. Despite this we are stronger than most and we will not let autism beat us. When I say I wouldn't change a thing about him - I mean it. He is perfect as he is. It is the world around us that is imperfect and in need of change. All I ask for this World Autism Awareness Day is that you make you and your children (if you have any) aware of this invisible disability and maybe you can find it in your hearts to befriend someone with who has it and brighten their life.

Here's to all the round pegs trying to get by in a world set up specifically for square pegs. One day may you be free from expectation and allowed to be the beautiful people that you are. You can teach us all a thing or two, if only we'd let you.