Then and now: aspergers in the family




I was wondering today how different I might have been if we had known about aspergers when I was little. I don't know about other adult aspies, but when I was growing up, the most you had, if you were lucky, was an understanding family that nurtured their eccentric child. If you were unlucky, then your difference was seen as a test for the determined parent.

I'm not sure how much has changed, in real terms, since then. Yes, we now know all about aspergers - or at least, we should, if it's appropriate to our situation. I don't believe there is any excuse these days for a family to struggle on in ignorance, not knowing why little Clive has to line up the beetles on the windowsill or why little Jenny screams every time the school bell rings. Or even why their little ones just don't seem right, you know? Not like the others, not quite the same. If only they could put their finger on it...

I know there are still parents left bemused by their children, possibly more so here in the UK than in the US - though, I hasten to add, this is my opinion and doesn't reflect on some of the excellent doctors, teachers and professionals we all come across from time to time.

I feel that in the US, awareness is greater, whereas in the UK, those who do know about aspergers, who are not directly involved, are still inclined to think it's an excuse for bad behaviour and there are still plenty of people who wouldn't immediately think of something like aspergers when faced with their child's behaviour.

So, assuming that we look at it simply as knowledge and information, how does knowing about aspergers affect the way you parent? And how would it have changed the way we adults were parented in the way-back-when?

In my case, coming from a family full of overly-interesting people, I was called a chip off the old block. My oddities were seen as normal for me, which was a great blessing. And I was shy. Very shy. So a lot of my behaviours at home, where I was mostly happy and confident, were buried under layers at school and rarely seen.

If there had been all the testing and diagnostic processes then, I may have 'got away with it' still. Girls present in different ways from boys a lot of the time and do tend to be good at covering up and pretending to be normal. I wasn't often that good at being normal but I could spot any kind of test a mile away. I thank my Granda for this, who had a love of springing tests of all kinds on you, as soon as you walked through the door.

Talking to health professionals and being assessed may seem like worlds away from my Granda's instant pop quiz to name all the actors on the front page of my Grandma's magazine, but I can tell you, it felt the same. As a child, you learn your lessons quickly, and I learned to perform under unexpected pressure.

My mother once took me to see a health visitor. The health visitor had to check her boxes to say I could speak and read and all these important things. None of which I would do in front of her. I was a mute, staring out of her window, pretending I couldn't understand. I knew that this nice lady, unlike my Granda, couldn't make me do her test, so I wasn't going to do it.

If I had given in to my impulses, or been tested in a less obvious way, and if aspergers had been a familiar concept then, would it have been different? When my son was first tested, at an age only slightly older than when I refused, he enjoyed the challenge of the questions and finished them more quickly than the psychologist could fill in her book. It was obviously a test, but he treated it as a game.

With less obvious testing, in a more normal setting, my son would, eventually, have shown much greater 'aspieness' than he ever did whizzing through the questions. In my case, if I'd had the naturalistic setting and testing, would I still have detected it was a test? Would my Granda-honed instincts have kicked in?

I suspect they would: even without a pop-quiz-Granda, children are not dumb. They know when something is different. If I had relaxed enough though, would my aspieness have shown through, like a lamp behind the curtain?

I'm still not sure. I was so closed off in some ways, so used to hiding my true self, that it may have been impossible to see the aspie me back then. Now, with greater awareness and life experience, I can see such tests have a purpose, a good one, to help us and make life better.

And that's where it becomes really difficult to say we could have been parented any differently. We are still us, the same people essentially. It doesn't matter which decade we were born into, we are still personalities developed through our genes and life experiences.

If we had been labelled back then and our parents filled with the blessing of understanding, we would still have had to go to school and out into the world. Our awful cousins would still have ruined everything they touched and our bad friends wouldn't have been any less bad.

Life is the same, even  if we are more aware and perhaps a little different. Our family can only do so much when we're faced with the world. We rely on others for and we can't live in the safe cocoon of our family for our whole lives.

At school, no matter when we grow up or whether we have a label, we still rely on the teachers to understand and adapt things for us. If that doesn't happen, then school may as well be the same now as it was when I was there.

At work, we may now have a label to say you can't fire us for breaking the photocopier every week, but do you really think that makes work itself easier? Perhaps some stress is relieved, you know you have to mess up properly to be fired - but heck, we can all manage that one.

We still have to cope with people, our bosses, co-workers, the endless, dreadful routine, the doing it every day. I don't think going to work with a label in my hand would make all that melt away and at least when you're pretending to be normal, you don't get 'the look' (not until you forget to pretend).

And still, even when our families know it all, know everything they need, whether we are adult, child or in between, that isn't always enough to make things okay. There is only so far that understanding can go when faced with an aspie in meltdown.

Knowing why your child, be they small or grown, is biting holes out of the wall, does help. But it doesn't stop them biting the wall. Or crashing the door. Or smashing the pots. Or ripping the photos. Or racking up the debt, or kicking in the job or screaming out everything they ever thought about you and what you did to them and how it'll never be okay, ever.

And then expecting you to still love them afterwards, because they know you do and they think you know how much they love you, too.

Being an aspie is never going to be easy or simple, no matter what we know. It can sometimes feel as if you just hate the word aspergers, as if it brought all this trouble into your life. This is as true for adults as it is for children, the hatred of the word and everything it implies.

Is it better, then, to have grown up without the label, devoid of the word aspergers? In the end, for me, I would say No. It may not have helped with many things but it could have eased the loneliness.

You see, even with a family packed full of eccentrics, I often felt lonely. I longed for a twin, who would completely understand me. I wanted that inner feeling of emptiness to go away and sometimes, there is no one who can do that for you.

If I had known then about the aspergers, I could have blamed it for that feeling. It probably is to blame, or at least to blame for the intensity of the emotion. I could have let myself off the hook and stopped judging myself for not being happy when everything was as it should be.

In the end, despite everything our family does for us, the aspergers label has its most vital role to play as a tool in self-understanding, for the child or the adult. We are all alone in so many ways and by understanding more of ourselves, we can be stronger and more loving towards our weaknesses.

This is why I would always encourage parents to be open with their children about diagnosis. There will be tears and tantrums and lots of blaming, but in the end we all need to know and accept ourselves before we can hope to be truly happy in life.

In the end, aspergers is just a label which sums up the real-life drama of so many people in the world. It can only go so far to making it all better, but knowing you're an aspie is the best place to start.

Amanda

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