I think, or at least, I hope, that the world is a better place now for children with autism. Whether it would have been better to know or not is something that I am debating and discussing with myself: I do not have the answer.
What I do know is that all of the things that were considered weird or worse were actually me. I wasn’t trying to defy the norm on purpose and I wasn’t trying to be different and not to conform because I was attention seeking. I was just being me. I know that now. I am nearly 52 and crying as I write this because I really want that to be ok. I really need someone to tell me that being me is ok.
That was just an example of me talking to myself but as usual I accidentally said it out loud. I am going to write about this talking to myself thing next, but for today I wanted to share a few traits that have made me stand out or made me feel uncomfortable or have simply made me wonder who I am and why.
My fantasy world is better than yours.
I remember very little about Primary school, but I do know that I was considered to be very clever, extremely articulate and precocious. I was sent to help the others when I had finished all of my work before them, and I continually asked for extra tasks to undertake. If I stare really hard into my rear- view mirror, if can see an area of slabs which separated the infant and junior playgrounds. I stayed within this limbo land and created my own world that belonged to neither of the others. I don’t remember anybody being in there with me and I don’t know what I decided it was like. I imagine that it was a world where I was ok and acceptable; I can only guess that I imagined a place where I was liked and valued for who I am, a place where I was understood. I was still looking for this but with my new insight into autism, I wonder if that doesn’t exist for me.
When I was a classroom teacher my opening lesson and project for the younger students would always be one in which they could create a new world and decide on its rules and values. I guess that I was just keeping my fantasy alive for a little bit longer.
Through Secondary School, I was the teacher’s pet, the goody two-shoes who never bunked and always completed homework and answered far too many of the questions. No-one else seemed to volunteer and I wanted to help the teacher. I told everyone that they really should attend the lessons because this would facilitate a better life. They told me that I was a ‘boring boff’ but I said that was fine because they would all fail, and I would go on to better things. For my 13th birthday I asked if I could be taken to see Shakespeare rather than attend the school disco. By this time, I had started to be more ‘funny’, so they tolerated me a little more. I was included in the netball group in PE now, but told not to touch the ball, just stand on the side and be funny they said. So I did.
I didn’t really understand the clothes and fashion and make-up thing, but I did try. I didn’t have a pleasant or supportive mother, which I guess didn’t help. She didn’t use deodorant and left used sanitary towels on the floor, so not the best example. I have a photo of the school trip when I was 11 which shows lots of trendy girls and me in long socks and Pippi Longstocking type hair bunches. I sat at the front of the coach because of my travel sickness and made friends with the driver. I even wrote to him and his family for some time after. I was, and still am, so travel sick that I always requested the front seat. It wasn’t until my husband pointed it out, that I realised this was probably the seat that no-one else wanted. Perhaps this could be the perfect diagnostic tool? So, where did you sit, or at least, aspire to sit on the school bus?
It was during High School that I really started to notice my physical symptoms although I had no idea what they were, and they have been mis-diagnosed for the last 40 years. I would suddenly feel exhausted and unable to function or cope with the noise and the light. I had to find a bench or a corridor and lie down. I described sensations of skin burning and cotton wool filling my head. Later at University these symptoms increased in severity and I might stay in my darkened room with the heater on full blast, for a day or more.
Geography and maps.
I love the world and the possibility to see new places; I am fascinated by the landscapes and by the cultures of the people who live there. I asked for an atlas with pictures as an Easter present rather than a chocolate egg. What on earth is a large lump of chocolate for anyway? The book that I received enthralled me and I dreamt that I was able to jump into the pictures and disappear. I also loved the maps, and still do. You can dream of a destination but only a map gives you a plan and a belief that you will get there. My life revolves around scripts and maps; the only unknown is the way the performance will be received, and whether we will ever reach the destination.
Science and Sociology.
I was the only pupil to be thrown out of all of the Science lessons, and I was banned from taking the O level exams. It was a mandatory subject at the time but that didn’t seem to save me from having a circuit board thrown at me by the teacher and being told to leave and never come back. They were trying to teach us about oxygen, but they couldn’t show it to me. I refused to accept its existence, unless they proved it to me. Same with the electricity that they said was somehow flowing into a plug. If that was true, I said, why couldn’t this be demonstrated and proved to me? They said that I was too stupid for the classes. I wonder now, if I was actually too clever. Does that sound really arrogant? I didn’t mean it to. I meant it to be factual. I ask what I believe to be genuine questions about life, the world, other people and myself, but they seem to contain all manner of hidden levels and meanings to everyone else, that I just don’t see and hear.
Sociology was exactly the same. It was all just wishy- washy debate with no conclusions. I didn’t understand why we were bothering to discuss lots of issues but never attempted to consider solutions. It was all just talking and looking and thinking but without an end in sight. I don’t understand the point of a ‘theory.’ Doesn’t this mean that anyone can be a philosopher or a physicist? I was bored and frustrated at the endless discussions without definite reasons or answers. There was no structure, no rules to follow, and so I stopped attending the class.
Recently I was asked to help an A level student with English language. I agreed because I thought it would be similar to the GCSE exam that I had devised scripts and systems for. Omg! It was sociology of child development combined with science. As usual I spent hours trying to dissect what was needed and did create some scripts and structures for her, and I, to follow.
Memories – or lack of them.
I have found my old scrap book in which I stuck lots of newspaper articles reporting on my awards for speech and drama. I also have copies of letters of complaint and concerns that I wrote to local newspapers when I was 13. Not precocious at all? One of the clippings shows the group of girls from my Secondary school with whom I organised a sponsored walk for a local charity. I organised everything and I invited the paper who then met us at my house. I have been looking at this photograph and wondering why I can remember all of the faces and can recognise the names listed below but I have no memories of anything about them. I have no feelings about them at all. And then I realised. I have no memories because there aren’t any. I thought that I had forgotten everything that I did and felt, but the sad truth is that I didn’t do anything with them in order to create memories or feelings. I talked to them, or at them? But we never did anything together. I was there physically but that was all. I didn’t talk about feelings and I didn’t do the girly chat. They liked clothes and pop music and boys; I read Shakespeare and entered speaking competitions dressed as Portia from The Merchant of Venice. My life has had lots of surface activity it seems but very little substance. I’m glad that I didn’t know this before. I would have been even sadder about being me.
University and missing the point.
Although I studied Drama and English, I never understood what I was supposed to see, and it was a running joke that I never understood the hidden meanings and nuances of texts. When shown an image of a wall with a brick missing, I was asked what I could see. I said that there was a hole in the wall, and I was sent out for being rude and sarcastic. But there was a wall and it had a hole in it?? When asked the symbolic meaning of 12 disciples, I said that Jesus just probably had 12 mates in the pub. Asked to leave again. I wrote an essay analysing poetry that I presumed was about birds. It said that ‘the starlings gathered like our fears,’ and then went on to describe big birds and little birds. It never occurred to me that it was about fear. I was told that I would fail if I continued to be so silly. So, I stared to research and tried to remember. I read books that told me what the poem was actually about. I tried to say what they wanted me to say, but I am sure that I expressed my irritation and indignation about this.
Living like a Drama student in Fresher’s week.
I think that this is what I have been doing with my life. I dive into every situation trying to be popular, trying to make my stories the funniest, trying to stand out and get noticed. I want to join in with everyone and don’t want to be left on the side-lines. I presume that these loud, opinionated, self- obsessed people are like me, and so will like me. I then spend the next 3 years being bullied or ignored but with no idea about how to escape. I don’t ever really contemplate escape anyway because I presume that I am not trying hard enough and am not doing enough to make them like me. And so, I just try harder.
Truth, justice and being a prude.
Throughout school I thought that song lyrics which referred to sex and/or violence should not be played to children. I was appalled at the words within various Grease tracks and I agreed that Relax should be banned. I have absolutely no idea why I thought these words were wrong and bad, but I did. I told everyone all of this because I thought that they might be interested in another point of view, that they might want to discuss and debate the issues. If there was evidence or research which explained the risks or issues, then I would certainly have put that before the court.
I always have lots of articles and facts printed off and stuffed in my bag – just in case. In case what? Well, I think in case I need a friend to back me up. The facts, truth and the fight for justice have always been my friends and so I take them with me. When I was teaching, I complained about the teachers who abandoned the year 7s in London prior to the theatre so they could head off to the pub. This was not the school’s policy and was not fair on the children or their unsuspecting parents. I refused to join any trips where this was going to happen. I wasn’t invited to go on any anymore.
If someone pushes in, then I point out to them the unfairness of their actions. If another driver is angry with me for doing something wrong, then I cry and want to find them and tell them that I am sorry, and that it was an unintentional mistake. I would like them to understand that their negative reaction has upset me.
Toys that talk
I liked the doll that talked to me; she was also able to walk if you moved her arms back and forth. I walked with her and she talked to me, and I discussed what she was saying, but I don’t remember playing. I don’t know what that means. I pointed out to my husband that our daughter never played with any of the toys we bought for her. I have a recording of her opening a bouncing Tigger and sitting and staring at it. I am in the background telling her that some sort of response might be appropriate at this point. I feel terrible about this now but at the same time, I am also quite impressed to reflect on the fact that at least I seemed to have learned something about appropriate responses in the muggle world by this point. My husband reminded me about the Disney Princess tea set that she played with. She didn’t play with it at all; I did. I pressed all of the buttons and each cup and saucer said something different. It was another toy that talked to me and it was me, not her, that was listening.
Not eating anything green.
I told everyone that I didn’t eat anything that was green. I always thought that my mother’s overcooked vegetables were to blame for this. The sloppy cold mush made me retch but I was shouted at for being rude and ungrateful. I tried to pull the chewy cardboard meat from my mouth and teeth because the repeated motion of my jaw trying to make sense of this made me feel sick and uncomfortable. But even if I managed to remove the item and try to hide it on my plate, I could still see it and the retching would start again. I can see it now and am rocking backwards and forwards on the chair, trying to push this picture away. I retain images, and they force their way back to the front without being invited. If I see down the plug hole of a bathroom sink, I immediately see a small hotel in Austria where 24 years ago, I was sick and brought back up the garlic bread from dinner. I took sandwich spread sandwiches to school every day for years which is unbelievable really, considering my aversion to sick!
I am often at school and I am trying to find the classroom, but I can’t. I walk backwards and forwards up the corridor and panic that I will be in trouble for missing the lesson. I never have the right timetable and am trying to find someone to tell me where I should be. Another time, I will be in an exam, but I know that I haven’t revised. I can see and feel the days before this exam and know that I have ignored the books that I should have been reading. To me, this is completely real. I can’t separate this dream from reality. I can see a classroom and know that the lesson is Maths. I should be there but I’m not and I have missed too many topics so am not going to cope. I wake up drained and shaking but everyone laughs when I say that my nightmares are about searching for my timetable. Maybe this makes a little more sense to me now?
Sometimes I am trying to escape an attack and I wake up panting and sweating. Sometimes there is a small space that needs to be climbed or crawled through. Everyone else manages to get through but I am stuck. My body doesn’t move like theirs and I can’t get to the other side. Who knew that my brain was using visual metaphors all this time?
Often when I am dreaming, I know that it is a dream and I talk to myself about this within it. I know that there is a place that I can go which will take me back to reality. Usually I lie down in the middle of the road and know that I will wake up. I have no idea if any of this is normal. My daughter says that she can do it too.
Dolls and imaginary friends
I had lots of Sindy dolls but never Barbies. I liked Sindy because she looked more like a proper woman and not the fake skinny blonde Barbie. My Sindy dolls never wore hot pants or inappropriate dresses revealing too much. Mine had trouser suits or maxi dresses with colour coordinated shoes. I don’t think that I played with them; I think that I used them to play with me. They would all sit down and be given various instructions or lessons. I told them all of the things that no-one else was listening to. I placed them around the room and on the landing. They had a nice yellow car and a blue tent in which they could escape and hide. They even had a matching blue lilo. Of course they did!
I had lots of imaginary friends who came with me everywhere and needed seats at the table and in the car. I was often away from school due to cystitis and they kept me company, and we all ate crisps together. Cheese and onion discos! As I sit here with my crisps, alone in the kitchen, I realise that the only thing that has changed is the gin and tonic.
The doctor said that I was making the condition worse by not using the toilet when I needed to go. I think that I had been shouted at by a teacher for needing to go too frequently, and so I didn’t go at all. To this day, my life is dominated by needing to go, and worrying about where to go, or what will happen if I can’t.
When not playing with my dolls, I might arrange my Matchbox cars and make them talk to each other. I had a lovely case for my cars and kept them pristine, putting them back in their places each evening.
I have another memory that is really quite sad I think. Well, I feel sorry for the little girl playing on her own. I never thought about it like this before. My 2 favourite toys were my Walkie Talkie Doll and Copykat Katy. Walkie Talkie was about a foot tall and had small disc type records that were inserted in her back. Then, she talked to me. She said “but you’ve got more ice-cream than me,” and “but I washed my neck yesterday.” I don’t remember what else she could say but I remember there being different colour discs. I still had the doll and the discs way past University, but I had stopped listening to her and had forgotten what a good friend she had been. Katy was equally as supportive. She sat on one side of the desk, pen in hand, while I sat on the other. I wrote and she copied me. Whatever I wanted to say on my paper, she found that she liked it enough to copy it down onto hers. I guess I liked that.