I lived most of my life undiagnosed, including all the way through my early years right up until adulthood. I went through the educational system from age 5 through to age 22 undiagnosed. I didn't have a great childhood, or a great adolescence. Adulthood aint that great so far either. Things are definitely better since my diagnosis though, now that my mind is clear of confusion and fear…flushed out by understanding and replaced with knowledge and…well, fear. Just of a different kind. What if I knew about my Asperger's Syndrome (AS) sooner? From a young child?
Obviously growing up undiagnosed has played a large part in who I am now, and maybe saddled me with some baggage too. But has it helped sculpt my abilities to "look normal"? Casual acquaintances usually see me as fairly normal, maybe at worst a little quiet or shy. People who know me better might start to see other facets of me. All in all, though, I'm outwardly fairly normal. However getting here has been a long process paved with failure, embarrassment, humiliation and self-loathing. But I'm here. I've walked through Hell and now I am where I am…robust and full of self-knowledge.
Awareness of AS is gaining momentum and more and more people are being diagnosed younger and younger. What does life have in store for them? Even "normal" children are wrapped up in cotton wool these days; prevented from sports days in case they "lose", having exams results re-worded in case they "fail", not being allowed to play in the street in case they "come to harm". And it's doing them no good at all. We're raising a nation of fat brats who watch TV all day and think they have a right to have everything they want without a thought for others. Their whole life revolves around them and the fulfilment of their every need. In a similar fashion are we also harming children with AS by telling them of their diagnosis?
I read articles from parents who have children diagnosed with AS and want the education system to bend for them. They want people to make allowances for them. They sometimes seem to want to remove responsibility from the child for their own actions. They look for medicines and pills to alter their behaviour. As human beings we learn by failing. If you remove all failure from a child's life how will they ever learn anything? No-one ever made allowances for me. No system bent for me. I fell, I got up, I dusted myself off and I learned from it. Battle by battle, scrape by scrape, I got stronger and stronger. If someone was there to make excuses for me or to stop me all the times my mouth got me in trouble, or my actions offend someone, or my thoughtlessness drove someone away then I'd be even less well equipped to deal with life than I am now. I have a whole bag of failure to dip into to remind me how not to behave, what not to say and what not to do. I've learned to enjoy my own company and be happy on my own. I've learned how to cope with other people's disappointment.
If a child with AS is brought up wrapped in cotton wool will they need that cotton wool their whole life? Will they become adults thinking it is the norm for other people to make allowances for them? Will they be able to cope when they come across a system that won't bend? People that won't make allowances?
I appreciate that my own AS is not as debilitating as others have, and that some people do have a genuine need for special care. I'm really talking about the in-betweeners, the high functioners. By teaching children that their actions can sometimes be excused, or that it is other people at fault because they're not accommodating you, are we doing them a disservice in the long run? Should we be teaching children with AS that they're "special" or should we be teaching them that life is hard…and for you harder still?
Maybe I just feel resentful that I did it the hard way so think other people should have to also? Maybe tough love really is the way? I don't have the answers, I'm just glad I'm not in the position of having to make a decision about what you tell a young child with AS.