Living With Asperger’s – Personal Stories Part 4
Some people are born feeling different. One of my earliest memories is of being at playgroup (or kindergarten, as you may well now call it) sitting having milk with all the other kids in the class, hearing the general hubbub around about me and knowing, somehow, that I was not, for some reason, part of it.
I would never want to, or be willing to join in with class activities, would clam up when fellow pupils (and also teachers) got too close to me, would start to cry and, in at least two cases I can remember, had a complete breakdown in the classroom. When asked why I had done so, I could never ever explain why this had happened. I did not, it seems, know right from wrong.
A classic example of this was the playground in Primary One. I was on a high, nervous or excited about something or other (I can’t remember what). Everyone else in the playground was either to line up all neatly and politely, in preparation for going into class, or else was quietly gathering in small groups, chatting to each other. I, on the other hand, was alone, in the middle of the playground. Laughing and chatting away to myself, I was shouting out to anyone who happened to pass. Mainly, at that time of the morning, it was teachers. I remember the prefects coming over and shouting at me, telling me to behave and be quiet.
Another memory from that time. My class running around in the gym. Doing so until the teacher told us to stop. I did not understand what we were being told to do. Either that or I got so carried away in the moment that I just forgot to stop. Another row from the teacher and another case of me not knowing why I was in the wrong.
And one last final example from my early schooldays. One that, even now, still sticks very sorely in my mind’s eye. A group of kids in the playground, playing some kind of gang or group game. It might have been tig (or he, or whatever you call it now). They were all shouting and whooping (as normal kids do when they are in a group) and I did not know why. I had no guidance, no-one there to explain things to me. In fear and haste, I lashed out and hit the one nearest to me. Hauled up by the teacher, I was asked by her if I felt that what I had done was necessary. Now, I had previously been told by my parents that it is wrong to lie. So, when asked, I said yes.
Here is the crux of the matter – I did not realise that what I had done was wrong and did not want to appear stupid by asking. I am sure that parents and Asperger’s “sufferers” (a term which I deliberately use here in inverted commas) will both relate to the situation I speak of here. That which, from the one side, is frustrating because you, as a parent, have explained to your child time and again why saying or doing a particular thing is wrong and you cannot understand why they say yes, seeming to understand then go off and do exactly the same thing again and you are banging your head against a brick wall because you do not know what else to do to get through to them.
Then, on the other hand, if you are an Asperger’s “sufferer”, you know that you have done something which you should not have done, quite possibly again, yet you have no idea either why it is wrong or what you could possibly have done to avoid it. You have not seen the signs which “everyone else” can plainly see.
That was what life was like for me growing up. Yes, there were (and still are) lots of happy times to be had but there were (and sometimes still are) many times of anxiety, doubt and worry simply because I don’t know what the hell I was supposed to be doing.
Much as my parents loved me, they were almost always at the end of their tether with me. I could not walk or run as fast as “everyone else”. I could not do simple things such as tie my shoelaces, climb over a stile or tie up a pair of skipping ropes without having every such task broken down for me into the smallest possible steps. This was done once with a smile, twice with a scream and thrice with a resigned sigh and an “I’ve told you so” look. Looking back now, I have the greatest admiration and respect for my parents and the way they handled me. It cannot have been easy for them, both working full time and then having to come home and explain the same things time and again to a child who just did not seem to take anything else on board. Everyone else around about them was having babies; none of them were having these problems, so I suppose none of them could relate to what my mum and dad were going through.
And so, the question arises, when did I realise I was different from others? Well, there have been a few signposts along the way. The first ones I have already discussed, but there were some new ones awaiting me in my teenage years. As my mum often said to me then, you can’t remain a baby all your life.
That was not what I wanted at all. Only, I did not know how to express this. I didn’t know how to change. I did not know how to adapt. I did not know how others felt. I did not know why the same things kept happening. I didn’t know why I was different. I just knew that I was. A case in point — my first successful job interview. An Edinburgh shoe shop. I was told I had nice manners. I was told I came across very well. Then I was let loose on the shop floor. My first customer … I guided them to a more experienced colleague, as I had been instructed to do, told the colleague what the customer wanted and then left the two of them to it. I went back to tidying the shoes, as I had been instructed to do when it was quiet.
My manager approached me, asked what I was doing. I explained what I had done. The exchange then went a bit like this:
Manager: Jonathan (short and deadly sigh) who is the most important person in the shop?
Me: (sweating and thinking fast) Er, the customer?
Manager: That’s right, so why are you not serving them? You should have followed their request right through, not just palmed them off onto your colleague, shouldn’t you?
Me: (looking crestfallen) Yes, I’m very sorry. It won’t happen again.
Only it did, two days later. I had to serve some customers with kids. I was so nervous I forgot to ask for the shoe size. The kid wouldn’t sit still. I had 100 things to think about at once. I couldn’t do it. I didn’t know why. I tried my very best. Sweat was pouring off me and I was in tears. Could I not get anything right? After an eternity, my manager pulled me up, gave me my coat and told me to just leave. Two things she said to me still stick in my mind to this day.
“Your problem, Jonathan, is that you seem to lack any common sense.”
“That last serving should have taken seconds.”
Oh, for sure, there were plenty of experts around afterwards, telling me what I should have done, why I shouldn’t have frozen; honestly it was so simple, why could I not have just done i? Everyone else would have dealt with it in half the time; why could I not just get a grip on things and bloody well do them properly? And at that point (this is where it gets really good) I didn’t know I had Asperger’s Syndrome, so even I didn’t know what the hell was wrong with me.
The advice I have been given by many people (family, friends, close and otherwise) in the twenty years which have followed the scene described has sometimes been a help and sometimes been a hindrance. Only sometimes, in retrospect, have I been able to work out which it was. And this is where I will start to wind down.
These are, in part, the experiences that have helped form me into who I am today and they continue to burn into my brain and cause me to stand up for myself and others in a similar position. So, here, for what it is worth, is what I have learned from my life with Asperger’s so far.
What advice was I given?
Watch what you’re saying to people. This nugget will crop up time and again in your formative years and you have to take it on board if you want your social skills to improve.
You just have to accept that
This, again, will recur regularly, especially if whoever it is around you who is giving it either does not know that you have Asperger’s Syndrome or is bullying you. It will also come from parents and carers who will be tired and stressed from what they see as incessant questioning and unnecessary problems caused by you not listening or “for some reason” just not doing what is asked of you or expected of you. Put yourself in their position. They won’t necessarily know of or be able to identify with the problems you are having. They won’t understand why you have or have not done something in a particular way. Try and explain to them why this has happened. Don’t be ashamed of having Asperger’s Syndrome because it’s not your fault you’ve got it. Take a deep breath, step back from the situation, work out what went wrong and why and then, when things have calmed down, discuss this with your parents.
And parents — the same goes for you!
Try seeing things from your kids’ points of view. Don’t make every wee word or wee chat with them a list of don’ts, tempting though it may be. Look out for signs of stress or discomfort in your kids. Don’t scream or shout at them in the heat of the moment, because that’s just going to make things worse. Watch how you phrase the advice or help you share with them. Admit both to them and to yourselves when you have made a mistake. Share your feelings, both good and bad, with them as this will create a bind of honesty that will cement an understanding between you. Remember that they are not everybody else’s kids and that some families are just far better than others at shielding problems and tensions. Be as approachable to them as you would wish others to be to you. Never assume that they have done or would do something just because it is “the sort of stupid thing that they would do”. Imagine how you would feel if people got stressed out at you or had a go at you, seemingly without reason.
Encourage your kids to speak openly and honestly…
…about their feelings and experiences in an appropriate setting. Go that extra mile and teach them what sarcasm, jealousy and bullying looks and sounds like. With your love and help and support, through both good times and bad, they will gain the tools for a successful and happy life and the wisdom with which to use them.
That is what my parents have taught me and what I now feel duty-bound to pass on to you.
Jonathan Robert Muirhead was born in Edinburgh in 1978. He first discovered he had Asperger Syndrome when he was 20 and since then has striven in whatever ways he can to provide both support and advice to those around him whom he suspects may have, Asperger Syndrome, just as others have always done throughout his life for him. Jonathan’s writing takes many forms and covers many fields. Jonathan is a widely respected and much in demand performance poet and if you should ever chance to see him then you are sure to recognise both yourself and others in one or more of the many characters who populate Jonathan’s verse. Jonathan is also becoming increasingly recognisable as a concise and informed reviewer of music and books and his writing populates websites such as www.isthismusic.com and www.popmatters.com, to name but a few.
This is Jonathan’s first venture into the field of purely autobiographical writing. He hopes that you enjoy it, that you can relate to it in some way, no matter what your reasons for reading may be. Jonathan can be contacted for feedback, writing work offers and poetry performances at [email protected]