The more I speak to parents of teens and young adults with Asperger’s (AS), the more I hear that their kids don’t want anyone to know that they have AS, they just want to be seen and treated as ‘normal’. It makes me sad, and it’s such a contrast to my own experience and approach to disclosure. Having been diagnosed at 31, I don’t think there’s anybody in my life who doesn’t know, except perhaps the postman and that’s only because he calls when I’m still asleep.
I know that when you’re a teenager and a young adult, the opinions of your peers matter more than anyone’s, and you don’t want to be singled out as different. However, I’m brutally aware that even though I didn’t tell my peers I had AS (because I didn’t know myself), in no shape or form was I seen or treated as ‘normal’. I was still singled out in a negative way, bullied, excluded, laughed at. My parents’ attempts to explain why I didn’t fit in (“oh they’re just jealous, you’re so xyz…”) did not wash and were no comfort. I spent a very long time trying to work out why people didn’t like me, and a lot of effort trying to do things to make everybody like me (and feeling crushed when it didn’t work).
Finding out why my life took the path that it did was almost like a reward, or at least like some very messed up candid camera show – “hey, you’re not imagining it, or making it all up, and here’s the reason why!” Ok so it’s not all sparkles and fairy dust, but I gained immeasurable confidence in every arena of my life, when all the self-doubt at illogical outcomes was wiped away. Whilst I dearly wish I had known earlier, I can’t help feeling that it would have changed my whole relationship with my Asperger’s – made it more the enemy than the ally it is now, or the cling-on, pain-in-the-arse friend I didn’t really want, rather than the white knight I had waited so long for and the gem I had searched so hard to find.
I wonder whether it is about contrast and perspective – whether you need to have suffered the not knowing to appreciate the enlightenment, or if this is an appreciation that a person achieves slowly through growing older and out of thinking that others’ opinions are the be all and end all. I worry that early diagnosis might stifle the quest for self-understanding and prevent young people from embracing their neurodiversity in a world that still bullies and excludes those who are different. I would love young people to be able to stand up and be proud to be themselves. I wonder, is there a way to pass my fascination and excitement on to those who have been made to feel ashamed of who they are? Or is a journey we each make alone?
© Catastraspie, 2012.