Life can be quite peculiar when growing up on the spectrum. Lines can seem blurry and you aren't quite sure about certain things. But in the world today, we must ask ourselves what we can do to make things easier and clearer for kids with ASD. One question many parents ask themselves is, “Do we tell our son or daughter they have autism, or not?” Parents may decide to tell their child, but don’t know when the best time is to actually have the conversation.
Let me give you a peek into my life, and what it meant for me to know about my diagnosis of Asperger's. Taking you back to the early years of my life, I grew up in Lithgow, and it was good. I felt I was just like everyone else. Dad didn't think there was anything different about me, but mum had her concerns. She noticed that I didn't take well to instructions, I’d line up my toys, and I would get in trouble (having no idea why what I did was wrong!). But life for me was nice, fun and relatively relaxed.
In 2003, when I was twelve years old, Dad's depot closed down and we had to move to a new town, closer to the city. Looking back on it, I remember, in this new location, feeling like an alien on an unknown planet. This was the first time I had ever felt different, as this new world was not the one I was accustomed to. There was so much body language, sarcasm and twisting of people's words that it felt like I was trapped in an episode from The Bold and the Beautiful. In the wild, if an animal has any particular deficit or abnormality, they will be singled out. Like a cheetah with stripes, I was singled out for my social awkwardness and I was seeking refuge in the library.
The worst part of it was that I didn't know why I was being left out, made fun of and getting depressed. So, when I started year ten I began seeing a therapist. A month or two into therapy, Mary (not the religious icon, but my therapist) asked me, "Thomas, have you ever heard of Asperger's syndrome?" Now I was confused - I mean, ‘ass’, ‘burger’? I don't want a burger made from that!
A year later mum and dad paid for me to get tested. But doesn't that sound weird? It's like I was tested with Bunsen burners and hamsters. Anyway, I digress. I got tested privately. Sure, it costs more to do so, but who knows how long it would have taken through the public system? After some vigorous examinations and tests, I was diagnosed with Asperger's at the ripe old age of 16. I already knew I was different. Now, I had something that I could identify with. I was no longer walking, lost in darkness. I was free!
I was actually ecstatic. But now that I knew who I was, it was time to figure out a way to combat the bullies that were haunting my childhood. Using my Aspie mind, I studied the great men of war - people like Winston Churchill and Julius Caesar. I found out something - that they knew their enemy. As I researched about how the minds of bullies work, I came across something very important - they make fun of something that you are ashamed of. I knew that my Autism was nothing to be ashamed of. So, one day in class, I stood up in front of the entire grade and said, “I'm Thomas. I have Asperger's and I'm proud! ". And the bullying slowed right down after that.
Knowing about my Asperger's helped me in my studies. I was given extra time in specialised classrooms for tests and my teachers became more patient with who I was and my condition. I also received help when I was transitioning to TAFE from a lovely woman by the name of Berinda Karp. In addition, I received aid through TAFE with a tutor. If it wasn’t for their support, I wouldn't have passed my CERT IV and Diploma of Multimedia.
So, what are my viewpoints on being told I had Asperger's? I am very thankful; it cleared up a lot of problems I was facing. One of my favourite mottos is "knowing is half the battle", and this was a real victory for me! I had something to identify with and I felt I could take on the world. I can honestly say it was one of the biggest moments in my life, other than meeting William Shatner.
Knowing that I have an 'Aspie' mind has given me the opportunity to learn about the condition and to be on the front foot when I face problematic moments in my life. I have been able to develop strategies. For instance, I once missed out on an opportunity to see Hugh Laurie and I was going into full meltdown mode. Thinking on my feet, I went to a quiet bedroom, hugged a pillow, and listened to some smooth jazz till I calmed down. I have made 'protocols' for the challenges I face in my life - from the good ones, where I over react to fantastic news, to hard ones, where I just can't seem to solve problems.
If I ever have kids and one of them happens to be on the spectrum, I would need to think about when would be the best time to tell them about their condition. Autism is a disability, not an excuse, so I would need to choose a time when they would be mature enough to understand that. Then, I would need to take into account that Aspies and neurotypical people are different. There is a high chance that because of this, they will get bullied. So I would need to pin point when they recognise their differences, and when their differences are being recognised by others. It could be when they are 9; it may be when they are 18.
The main thing to consider is how this knowledge will affect the son or daughter. Will they want to have known earlier, or will they have wanted the freedom of not knowing - because, after all, they are the only ones to control their destinies? Well, maybe not quite. The parents, of course, do play a big part in how life unfolds for their child. So, the choice about revealing a diagnosis is completely up to the parents, and it is a very personal decision, taking into account the fact that all kids are unique packages!