There's nothing wrong with you!

How often have we heard that? Or, as the parent of a child with aspergers, heard that there's nothing wrong with our child that some discipline wouldn't sort out.

Aspergers doesn't leave physical signs that people can tick off on their disability checklist. If you know what to look for, you may be able to spot a fellow aspie at ten paces - there is such a thing as aspie-dar. Otherwise, you're left wondering if a person is on the autistic spectrum or just out to drive you crazy. (It should be noted, some people are just out to drive you crazy and I'm still undecided if there are more of them than there are aspies in the world).

Girls with aspergers possibly suffer less from being threatened with discipline, as aspergers in girls is often harder to diagnose. In my experience, girls tend to suffer on the inside in a way that doesn't always show itself on the outside; or at least, they don't display their suffering in a way that makes people think there may be something more going on.

Again, in my experience, boys are more extrovert in their aspieness. I don't mean they are more likely to be extroverts, but their behaviour is more noticeable. They act out, are more obviously 'naughty' and so on. They are the ones who get to meet the headmistress, while aspie girls sit in mute isolation, not getting into trouble as much but not coping any better either.

This is all generalisation, though, aimed at explaining the main issues. Everyone is different and every aspie is different. I have known girls on the spectrum who burst into a room, their aura a blaze of colour as they burn across the room, then collapse in floods of tears when the reaction wasn't as expected or they couldn't cope. I've known boys who sit, like monoliths, impassive, unmoved, no visible reactions to things they find hilarious and who only emerge very gradually from their shells, once you know them much better.

Both of these examples can be firmly on the spectrum, both can be properly aspie, but will be viewed as loud and inappropriate, or too quiet and unsociable. Their school reports may differ in the advice for their behaviour, but will probably come together as teachers say they can achieve more if they would just try harder, which makes the child look lazy or inattentive.

There's nothing wrong with them, you see. They are only misbehaving, or not behaving in the right way. If they would only do as they are told, they'd be fine.

I have to add that my comments can be applied to the diagnosed aspie, too. For anyone considering a diagnosis, either for themselves or their child, be aware it is not a golden ticket to better understanding and treatment. It's not the label or the diagnosis which brings you these things, it's the people you meet along the way. A teacher or employer who is open-minded about you or your child is likely to treat them just as well and with as much understanding, with or without a diagnosis.

It can be so frustrating as a parent of an aspie child, when you are trying to make people see how they need to be treated. When my son started school, I explained until their eyes glazed over how he shouldn't be unsupervised, he needed clear guidance. I was as straightforward as possible.

This didn't prevent the school disregarding nearly everything I said. They once went on a short trip to the local church. It was five minutes away, on foot. They made the children walk two-by-two. I had already told them they should hold my son's hand if they were ever out of school as he loved to run off. Instead, they let him hold another boy's hand and explained to him he mustn't let go.

Halfway to school, while walking along a street with cars parked on both sides, my son saw something on the opposite side of the road and took off after it. He remembered he mustn't let go of the other boy and, gripping him firmly, took the boy with him into the middle of the road, from between parked cars. They were very lucky, there was nothing coming.

At the end of the day, as usual, I was taken to one side and told how naughty he had been and what had happened. I was appalled at what might have been, as much for the innocent boy he took with him as for my son himself. I admitted how I felt but told them again that I had said, more than once, he shouldn't be out of school without a teacher holding his hand. The teacher talking to me looked irritated, like I was trying to get him out of trouble, and told me they had explained to him fully what he needed to do.

What can you say that you haven't said already? I had explained the reasons behind keeping a good hold of him outside school. I had told them how he took off whenever he could and had no understanding of the consequences and no sense of danger. I had been as clear as I could with people who should have listened. After that, you leave your child in their care and hope for the best.

It was never resolved with that school and we changed schools later. New teachers and different treatment from staff meant my son could enjoy his school days again and be safe.

I've covered in another post (http://aspie-girl.blogspot.co.uk/2012/10/the-myth-of-under-achiever.html) what it was like for me going through school and work as an undiagnosed aspie. There was nothing visibly wrong with me and I could behave, more or less, like a normal person. I could hold conversations, learn new things, perform when necessary...until I couldn't.

You see, as an aspie, you can do lots of things, quite a lot of the time. To the untrained eye, there is nothing wrong with you. People differ, but a lot of aspies can manage things most of the time, often because they have learned coping strategies or learned to avoid situations they can't cope with. So, at first glance, there is nothing the matter. Then you get the days when things go wrong, or unexpected events shake the aspie's world, or they just wake up and it's a no-go day. Then you're stuck with being unreliable and needing to get across to people why you can't do today what you have done all week.

Why not? would be the question people might ask, if you were completely honest and said, 'I just can't today'. If you haven't been diagnosed or haven't come out as an aspie, then what do you say? It's no good saying you're having a bad day, or feeling down. Then you really sound like you're not pulling your weight. You make something up, that's what you do. You give an acceptable reason why you can't come in today.

I was doing a temporary job, full-time for a few months. It was public-facing, occasionally stressful, working with lots of people. It required organisation and attention to detail. It was all day, for five days a week and I didn't even leave at lunchtime.

By the second month, I felt like the walls were closing in on me. I would go to the bathroom just to have a break and sit in the toilet cubicle, door locked, head in my hands, bent double. I can't tell you how many times I've hidden in toilets in my life! The bliss of a locked door.

I had to take time off and I had no good reason. I also didn't understand what was wrong with me. I'd been pleased to get the job, I really needed the money. I wasn't ill, I wasn't properly stressed, nothing in particular had happened. I just knew I couldn't go in. It was like a forcefield: every time I thought of work, I bounced right off it.

I told them I had a bug and would be off for the rest of the week. I had three days, then the weekend. So, five days before I had to face work again. I spent the first day in town with my mother, as she did her errands. I stood outside shops, waiting for her, because I couldn't stand to be inside, where there were lots of people and enclosed spaces. I went to town with her because I couldn't stand to be at home either.

I remember standing outside one shop, facing across the road. I was looking at a theatre, the Carnegie, to anyone who is local to me. I used to go in the theatre's cafe when my Grandma looked after me, before I started school. I remembered sitting in there, the smoky atmosphere of cigarettes, the gossip of my Grandma and her friends. I sat with three ladies of a certain age, me a small child, content to spend my days with them. The background noise of their gossip and the world around us all was a safe place for me because I was looked after and not expected to participate. It was a peaceful time.

Now, all those years later, I stood and stared at the Carnegie. I touched that place in the past, where I was small and safe. The little me, with the scuffed knees and red shoes; she was satisfied and content. The bigger me needed some of that light, that contentment and safety. Enclosed in my memory, I heard the voices of my Grandma and her friends, their laughter. I felt my hand in hers, my fingers warm under the edge of her coat sleeve.

I knew, then, that I wasn't the person I had expected to be. It was at that moment, faced with the happy child I had been, that I saw I wasn't happy now. I realised that, for whatever reason, my life didn't fit me. The life then had fitted me. I had felt safe and now I didn't.

Reader, if I hadn't been so numb and weak emotionally, I would have cried as I stood there. Not tears of self-pity, or sadness at not being safe in my Grandma's hands anymore, but tears of confusion because I didn't know what was wrong with me. I just knew that there was something wrong.

And there, that was the moment when I started this journey. That was where I began to explore why I was different. Not just eccentric, or odd, or from a family where that could pass as normal. Why I was unfit for purpose in the modern world, what it was about me that made me fear the very places I needed to be.

I've made it here, to you. I know more about myself now than I ever expected to know. I thought, by now, I would know everything. I'm often amazed how much there is still to learn. I needed to suffer then to understand myself now.

I have to tell you, I still sometimes hide in toilets. I still sometimes need to remember the feel of my Grandma's coat sleeve covering my fingers. I'm never going to be so strong that I don't need to look back at a time when I was small and weak and felt absolutely safe.

The difference now is, I know what is wrong with me. And it's not wrong. I just happen to have aspergers, that's all.

Amanda

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