Title: Living with 'Asperger'

We’ve lived with Asperger’s all our lives haven’t we? Maybe one day I’ll escape it, but you never will, and that’s where the problems lie. When we were younger you would shout at it, like it was some kind of Disney villain, that only you could see, ‘ Asperger I hate you! Go away Asperger!’ Sometimes there would be tears in mum’s eyes because no one could make ‘Asperger’ go away, sometimes the only thing to do was laugh, no matter how cruel that may seem.

Perhaps tolerance should have come with age, but it hasn’t. When I was younger Asperger’s didn’t bother me too much, actually sometimes I was jealous. The countless Thomas the Tank Engine toys bought for you, even when it wasn’t your birthday or Christmas, because the different characters taught you facial expressions. Dad would come home with the bag and I knew there wasn’t a toy in there for me. You wouldn’t let me play with Henry, because you liked his grumpy expression. And when you did something bad, like breaking mum’s wedding vase, you would blame it on Henry, and get away with it. Funny how it didn’t work for me. But even then as you pulled toy after toy from those bags, I knew deep down that you weren’t the lucky one.

While other children go through playground phases, like Pokémon cards, marbles and Barbies, you become obsessive about one subject for years, and it will be all you can talk about. It will consume you and consume us. Mum calls them your ‘special interests’, I know you can’t help it, but sometimes I can’t stand it when you recite the conditions of the Treaty of Versailles - your current ‘special interest’- or when you list, in order, every single Doctor Who there has ever been, to strangers. It’s because you can’t make small talk, I know that, but others might not. It’s hard knowing that deep down you want to make friends, and it’s even harder knowing that you can’t.

The jealousy about the toys and the fizzy drinks didn’t last long, but I’m ashamed to admit that sometimes I get annoyed and embarrassed by you … I’m sorry.

That night at my school concert, when the noise became too much, you lay down on the ground and you were screaming and mum couldn’t make you stop. I knew you couldn’t help it, but everyone was staring, disapproving. I just wanted to disappear. Or wanted you to disappear.

I’m sorry… but it really annoys when I have to constantly watch what I say. The word ‘Ok’ confuses you; gives you a funny feeling in your head; and you start to bang it off the wall. It looks really weird. You feel like we speak a different language don’t you? Sometimes I think you might be right. You are always telling me that eighty percent of our communication is non-verbal, which is impossible for you because you can’t make eye contact, or read social signals. So many words have different meanings, and sometimes as what something means can only be determined by the tone of voice, and the words that have come before- it’s a total minefield for you. Remember when Jane told me that guy from school thought that I was really hot and really cool? You could not comprehend how two totally opposite words could mean the same thing. When I tried to explain, you told me you feel like an alien on our planet. You must feel so lonely sometimes.

Yet it can seem as though you don’t feel anything. When gran had her stroke, mum was so upset and yet you couldn’t help but regurgitate statistics. All you could say was that it was actually a Cerebral Vascular Accident, an interruption to the blood flow to the brain, caused by a blood clot or hardening of the arteries. You also helpfully pointed out that, on twenty cigarettes a day, you were only surprised that she hadn’t had one before now. Dad said that it was helpful to have someone like you around when dealing with grief, someone matter of fact. But one look at mum’s tear stained face told me different.

You see mum suffers as much as you do. Maybe one day I’ll be free, but ‘Asperger’ has got as much of a grip on mum as it has on you, sinking its claws deeper and deeper into both of you as the years go on. They say that Asperger’s is a high functioning form of Autism, but what is the difference when they both leave you emotionally empty? I feel like I constantly have to overcompensate for the words of love and affection that mum needs to hear from you and, yet, knows that she never will. Sometimes we all feel like objects, simply there to meet your needs, and not a member of your family. Yet when a dog comes into the garden or passes you in the park, you become the most loving, gentle person. Mum remembers the first time that you ever showed affection- it was in Disneyland, when Mickey Mouse brought out your birthday cake, and as those twelve candles glowed, so did your face, as you reached up and gave him the biggest hug. Why was that, when you couldn’t bear to be touched by a member of your own family?

Of course you get on my nerves from time to time, but sometimes I feel so frustrated for you. Occasionally I stand in the doorway of your bedroom. It’s empty-just a bed, a wardrobe, and that Snow White snow globe that mesmerises you. It’s like that because you can’t stand clutter. If there were more things, you would throw them around the room, you would panic. Dad jokes about the minimalist approach, but we all know that it is just empty. I wonder what other people would think? It’s so sad that you can’t have what most other twenty year olds have: a dressing table, bottles of perfume, posters on the wall, and the obligatory pile of clothes on the floor. But then you’re not most twenty year olds, are you?

Your life is so full of targets and restrictions. High school was difficult. I know how much you had wished you were in mainstream school. It was one of your targets for a while. I knew that you would never get there. Can I confess something to you? I hoped that you wouldn’t get there. I knew that you wouldn’t have been able to handle the noise in the corridor, the smell of perfume or the sarcasm of teachers… nor the social minefield that was lunchtime. You would probably have ‘grassed’ on people, because I know that you can’t tell lies. Inevitably you would have got into trouble for being ‘inappropriate’. Ok it wasn’t entirely selfless, I was scared that people would think that you were weird. ( sorry I didn’t mean to say ‘ok’.)

I know that you are the one who lives with ‘Asperger’, but you have to understand that we live with it too. It is the elephant in the corner, inescapable, sometimes silent, sometimes explosive. You determine whether you are going to have a good day by how many cars pass the house during breakfast. If it is an even number, it will be a good day. But if it’s an odd number, it’s a dark day. You hate odd numbers don’t you? Did you know that sometimes mum gets in her car, and drives past the house herself just to make it even? It’s so important that you have a good day, because when you do, it’s almost like…

I’m going to university soon. Mum hasn’t told you yet because she knows it will make you stressed. You don’t handle change well. You didn’t even like it when mum bought a new angel for the Christmas tree, and wouldn’t come into the house until she found the old one and put it on. I need to go you see, because the guilt I will feel when I move on will be nothing compared to the resentment I would feel if I stayed. Going to parties is already hard, because I see you curled up on the sofa with mum, watching T.V, and it seems so unfair on you. I suppose that’s the effect that ‘Asperger’ has on me. It makes me feel guilty, which makes me resent you.

I will come back, just wait and see. The truth is that you are my sister, and it’s not from you that I am trying to escape. I don’t know why ‘Asperger’ chose you, and I know that you will never be free. But the truth is that as long as ‘Asperger’ has a hold on you, it will have a hold on me.