World Autism Awareness Week 2016 

It’s that time of the year again….World Autism Awareness Week begins this Saturday 2nd April and runs till Friday 8th April. 
Is one week enough to raise awareness of autism world wide?? The Simple answer is No! 

Autism doesn’t just go away or disappear. You don’t outgrow it and it doesn’t get any better. It gets harder as they get older and it gets much tougher. Children with autism become adults with autism and are sadly expected to behave like ‘normal’ adults. I wish it was that simple but it truly isn’t. 

These children are fighting a daily battle. They don’t understand the world like you & me. At times it’s a scary and a complex place to be. They want to run away but they have no where to go. They don’t see things the way we do. They don’t hear sounds like we do…. in their world it’s louder with so many things happening at once. They can’t digest that amount of information at once. Their anxiety and stress levels reach breaking point, but believe me they try harder than we will ever understand. If I had to make a comparison, I would liken it to an average British person going to China.. we don’t understand the language, we don’t know how things work, we don’t know which direction we should take, we don’t understand why everyone is in such a hurry, why is everyone running around? Why are the cars all going in the opposite direction? Magnify this confusion by 10! This is a very slight indiction to what children with autism face every time they leave the safety net of their home. 

Believe me when I say we truly couldn’t even begin to understand this, but they do try I can promise you they do try. I see this everyday. I see her trying and she honestly tries so hard. Some days are good and some days we are lucky if we get to the bottom of the road….. but we try and when we fail we try again!!! Please don’t think our children are deliberately avoiding you when they don’t acknowledge you…. please don’t think they’re being rude when they don’t make eye contact….. please don’t think they’re spoilt when they keep asking for the same thing. They are trying, they really are but in that moment they can only do one thing at a time, so making eye contact and saying hello is like & me having a conversation and writing an essay at the same time. It can’t always be done! 

Simple things we take for granted can be extremely difficult for children with autism and at times painful. We don’t have all the answers… we don’t always get it right, but I promise you we do try. I’m her mother and I should know … well to be perfectly honest, I don’t always know. I don’t always get it right. At times I want to know what I need to do to get it right but there’s no manual, no guide book, there no magic wand and there’s no miracle. 

Autism is hugely complex and no two people are ever alike. There are broad similarities but you can ever predict how one of them will react in the same situation. I’m her mother and sometimes even I don’t know what to expect…. I’m supposed to get this right. I’m supposed to know the answers. I’m supposed to know how she will react. I’m supposed to know the triggers, after all I’m her mother, I should know! Well the truth is I don’t always know. There are moments I want run away, pretend this isn’t happening. There are moments I hate myself for getting it wrong. There are moments I feel like a failure. There are moments when I think I can’t do this and there have been moments when I’ve sank to my knees and prayed because that’s all I can do in that moment. 

So you read my blogs, please don’t pity me. Pity isn’t what I need. What WE need is for you to understand our journey and understand how our children are trying… how we are trying. We are trying, oh we are trying to help them with every ounce of strength we have. We’re trying to help make the world a better place by trying to help you understand autism. 

You see the smile on my face but what you won’t know is that I cried myself to sleep last night. You see us happily walking down the street but what you don’t see is the battle I had getting her out the house. You see her socialise but what you don’t see is that my eyes & ears are everywhere making sure she doesn’t see something that could trigger a meltdown. You see us share your children’s milestones & we are truly happy for you but what you don’t see is how desperate we are for a milestone. We listen to your worries but what you don’t see is how we would gladly swap yours for ours. You see what you consider an inspirational mother but what you don’t see is the depths of despair I feel, you don’t see my heart break daily and you don’t see me hating on the world at times. You don’t see the sleepless nights, night after night, most of all you won’t see the pain this journey has brought. You will never see how many times it broke me…. you’ll never see just how many times I’ve hit rock bottom but what you will see each and every day is my smile. 

You can make this smile brighter & better simply but learning more about autism…. helping others understand autism and trying to understand autism as her mother, thats all I need you to do. I promise I’ll do the rest for her….. I’ll help her, I’ll guide her, I’ll encourage her, I’ll support her, I’ll never give up on her and with your help in understanding autism we can make the world a better place for all those living with autism. 

Pam Malhi 

Aaisha’s Hope  

 

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