The Alternative Spectrum
Tonight is much the same as any other night in our house… the boys who do not sleep are, well; not sleeping and I am sat debating many things. These include, in no particular order; why I was ‘sensible’ and didn’t buy any sweets and/or chocolate at the supermarket yesterday, when my youngest son will get to sleep tonight (I don’t feel safe sleeping while he is awake), if I’ll sleep ok tonight, shall I make lunches now or in the morning, should I be studying (I probably should be), social stories, and how once again I have been let down and pushed aside by someone who claimed I was important to them.
I have two sons on the spectrum, one with autism and the other has aspergers and a number of other conditions, an NT daughter, and I have aspergers and dyslexia myself. I made it through school and college and no one noticed. I was just the quiet one. How many times did I hear ‘oh, she’s just shy’ or worse ‘you’re not shy, go on’. My mother would force me to talk to family members on the phone even though I hated it, I’m sure it’s given me some kind of complex as I still avoid it where possible and I’m 33! I always knew I was different, the thing is and not many people understand this, but I was not unhappy. I didn’t feel shut out or like I was missing out when I wasn’t invited to parties or to play. I guess looking back it suited me as I was happy on my own anyway. I didn’t share many interests with the other kids around me and I always felt ‘different’ and ‘separate’ from them. I can remember distinctly a time when I would sit and read in the library for hours on end because I wasn’t allowed to take out the books I wanted to read on my childs ticket. While the other kids in my class where only concerned with football, pop stars and such I was reading books on astrology, psychology, natural healing, music and Tolkien. At high school we had to read The Color Purple and To Kill a Mockingbird and so many people complained that they were boring but I loved them both. My Nan used to say I was wise beyond my years, a phrase I didn’t understand at the time but now I can see just what she meant. In some ways I was always old for my age but in others so young, naive even, maybe.
On that count, I don’t think I have changed that much. I still miss most of what is going on around me and am glad for the fact to be honest. When I see the hassles and drama my friends go through or have to get through the bits in my own life I think, really I am glad I don’t have a huge group of friends or a long line of potential dates. I was married, before my diagnosis and when I still believed what I had been told for so long – that there was something ‘wrong’ with me, that I was somehow ‘broken’ and should be ‘fixed’ and to someone who really did not understand autism at all and took everything so personally and as if it was a direct insult to who they were just because I didn’t agree. Sometimes it was good, really good but others so, so hard and tiring just to do the day to day things. I am proper soft me, it is hard for me to be hard on or nasty to people even when they deserve it. So to have things about me that were parts of me questioned and motives interpreted as unkind and dishonest was hurtful and hard to understand. This of course made the problem worse. My need for quiet or to be alone was never a reflection of how much (or little) I cared or ‘silent treatment’ because I was annoyed. *sigh* Quite a few people asked why I was bothering with the hassle of an official diagnosis when I had lived this far not knowing but to me it felt important and my doctor originally told me there was no one in my area to do an adult diagnosis, which triggered my stubborn side I’ll admit. I knew technically they could not refuse to let me see someone and how many other people were struggling and left their doctors feeling there was no hope? So I pushed it and I was right. I already knew what it was, part of my degree was a module on autism and it was like reading a book written about me. Not weird, broken, stupid or any of the other negative things I had been lead to believe, just autism. There was a name for it and somehow that made it seem less of an issue. And what a brilliant thing that diagnosis was! I now understand myself and the way I am so well and can work with that and not feel bad. Now I actually have the confidence to do things I wanted to for so long and now, although I never felt bad or sad about it before, pottering along in my own way seems somehow brighter and clearer. I suppose this is what people mean when they say a weight has been lifted off their shoulders.
I had put the language problems I have down to my aspergers and not thought much more of it but university picked it up and suggested I was tested for dyslexia. I have always loved reading and thought I did pretty well and was surprised to find I actually didn’t in comparison or the many other things that dyslexia covers that I was struggling with and not really realising. It also solved the mystery of my eyesight issues that never show up on sight tests. I was starting to think I must be imagining them. Sure, I was 32 at the time and had managed all that time with no extra help or understanding and even though, other than at uni, I don’t get any extra help having that official piece of paper has made such a difference to me I cannot say. I know why I am the way I am and do the things I do, which is comforting in itself but it also means I know how to figure out what to do about them if I need to. Like lists, lists have saved me many times! Hehe
But back to tonight… everyone is still awake; it is 10:20pm. I am attempting to write social stories for my son. Never seen one before, but have a book from Amazon (considering taking out shares in Amazon given the amount to books I buy!) so I can only hope I can come up with something reasonable…
For more from the blog event
Autism: The Bigger Picture
please visit here. Thanks for reading! : )