Wednesday, 8 July 2009

Hard knocks or hard candy?

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.


indigo said...

this is a fantastic post, you know. i'm just where you describe in terms of having the small child with AS about to start school. i also have the bag full of failure to dip into, a million bitter memories of being totally misunderstood. re: support.. well, it's a fine line to walk, and many of the professionals involved with my son are sensitive to this.

i have no idea whatsoever about what to tell him. none. he is who he is.

LivingLifeBackwards said...

Really good post!
As the mother of a child with of AS and ADD. My son does take a very low dosage of Ritalin for his ADD. He is not medicated for the AS, and I don't think I ever will medicate him for it. I held him back in Kindergarten because I knew he needed the extra year so he could get into a "groove" at school. He was also put in some Special Ed classes that helped him learn to communicate with his classmates. He is now out of all special ed classes and goes to school with all the other children. I agree that the world will not adjust to HIM when he gets old HE has to adjust to the world. He is aware of the fact that he is "different" and I've explained that he thinks differently but it doesn't mean it's "wrong". We've had to go over feelings quite a bit and he has learned to "mimic" what other people are feeling. (Sad when someone dies). Not feeling relieved it was himself or me. Our family "gets" him but he is also thrown out into the real world every day at school. Yes he is called "weird" and is never invited to birthday parties. It does break my heart. He also does have very close friends that embrace his differences. He's an amazing artist, and can throw some facts out there that you wouldn't believe. The struggle is giving him the tools to show that to people first hand. Right now he's just the "weird" kid. If you've ever watched Napoleon Dynamite. That is my son through and through.
Sorry I'm so long winded.

AS-4-L said...

I distinctly remember, in the playground as a child, when everyone would crowd around and show utmost concern for someone who had fallen or hurt themselves. I'd always wonder why they even cared.

Acting sad and concerned when someone informs me of their latest bad news is probably my most called upon acting skill to date.

Beastinblack said...

Agree that kids should be allowed to fall once in a while, its the only way to learn, but still they are only kids. I think the parents of AS kids who articles/blogs are just concerned, like any loving parent would be. But still, like you said the wrapping up kids in cotton wool is more of society in general. That is the result of fake left wingers who call themselves Nulabour. At the end of the day AS or not kids should be told right from wrong, if they do wrong they get punished. AS kids with at least a normal IQ are capable of learning that. Any kid should be encouraged positively.