Today marks the start of Autism Awareness Month. Tomorrow we wear blue or ‘light it up blue’ for autism awareness. These are great things, they help to raise awareness amongst the wider population about autism and its impact on people and families. Autism charities use this time to launch new information videos, leaflets, etc. And there’s a wealth of information available to help people to understand autism. Hopefully lots of people will take time out of their busy lives to read a bit more information or watch a video. Every little helps as they say.
People talk about Autism Awareness and Autism Acceptance. This makes me wonder about my own levels of awareness and acceptance.
Before we had J, I only knew a little about autism. I was no expert and I certainly hadn’t read any books on the subject, but I thought I knew enough to understand the issues faced by people with autism and to be understanding. I was wrong. Since J’s diagnosis I have made it a kind of mission to find out new information and to use this new knowledge to support my son’s development. There is so much information out there it can be really daunting to know where to start. For me my starting point was to find out about the issues he could face and how to support him, what kind of support services we could access, helping him to overcome his difficulties and providing ways for him to cope with his environment and learn new things. I waded through hundreds of web pages, leaflets, YouTube videos, books and journals/articles. Some were useful, some were not. Every person with autism is different. As the saying goes ‘if you’ve met one person with autism, you’ve met one person with autism.’ There are certainly some common difficulties and issues but each person and their family cope differently with what they face.
So, what does autism mean to me?
- For me it means late nights, early rises and up at times in between;
- It means not being able to hear my boy express his needs or join in a conversation;
- It means watching him struggle with every day tasks that other children take for granted like riding a bike, putting on his shoes or going to the toilet;
- It means always being vigilant and aware as J has no awareness of danger;
- It means listening to him wail or whine when he can’t cope with his surroundings or it’s all just too much
- and it can mean watching as his brother tries in vain to play with him when he doesn’t know how to.
All of this makes it sound bad, like a chore, like J is missing out majorly in his life. Yes to an extent he does miss out, there are things he just isn’t able to do. Yet there are many things he gets so much enjoyment from, to an extent his joy is simpler. He’s easier to please than B. He doesn’t dig down deep into the nitty gritty of things and he just gets on with it. He adapts the world to suit him at times too and does things differently.
So this means that for me autism is also:
- lots of pushes on swings;
- lots of swirling water;
- splashing in puddles;
- running everywhere instead of walking;
- being outdoors a lot;
- trips to the sea side;
- all of us joining in with clapping because J thinks he or someone else has done well;
- pointing out every truck, tractor and trailer on a journey
- holding his hand tight until the dog has gone past.
You might think that doesn’t sound much better than the previous list, but it is. Seeing that innocent, unbridled look of joy on his face, sharing the giggles and cuddles as he shows us how happy he is at experiencing what life has to offer. J loves life, despite his difficulties and generally could teach us all a lesson in how to be happy. I just hope that as life moves on he can stay that way!
Throughout my ‘research’ I have found a lot of useful information and read a few good books. Here are some of the more useful or interesting ones:
What Is Autism?
Books/Websites written by parents of children with Autism: