The thing about this mask, is that if it was working then it might be worth leaving it on, but it isn’t. Well, that’s not entirely true. It works for a while but then I think that it starts to crack and sag. After 50 years of use it is not in very good shape anymore. It also works far too well when it would be much better that it didn’t. Doctors and specialists don’t or can’t see past it and until recently I had no idea that I was wearing it so I didn’t see it either.
Looking back at my life with the new guide- book of autism/ Asperger’s is a shock. It is too confusing and there is too much to think about. I have no- where to go to be me. To just relax and not worry about what I might say and do to annoy someone. I’m not real anymore. I have no idea who I am and who I was, and I would really prefer not to exist at all – it is just too horrible being me and not knowing why I am like this. I think that I am nice, but no-one else seems to.
I always thought that being bouncy and manic and unable to stop or shut up or shut down, were really great attributes. I thought they everyone would love me for this. Until I read and listened to articles, podcasts, audiobooks and You Tube about Autism, it never, ever, occurred to me for one minute that this was not what people wanted and that there are actually secret rules that they already know about.
The Love Actually necklace scene on repeat
If anyone asks about my life, I tell them that is like the scene in Love Actually where Emma Thompson realises that her husband has bought a necklace for someone else. The awful truth hits her, she goes into her bedroom and cries, she wanders around trying to calm herself and distracts herself by tidying the bed. She composes herself, wipes the tears away and goes back to join in with just a bit too much enthusiasm. That is how it is to be me. Over and over and over again.
Telling my story without any emotions
I have always been incredibly open and honest about everything; it never occurred to not to be. All of my life I have given people an honest, and no doubt, thorough response to whatever they have asked. At college and Uni, people came to talk to me about adoption because I was open about it and they all said that I “didn’t mind.” In recent years people that I have met have been told about my adopted parents, my biological family, my years of domestic abuse and how I lost my virginity. (I was raped, but I will save that for the next chapter.) I never thought about how I felt when I spoke. I always said that I was obviously the strong capable person that they saw before them because of all that had happened to me. Everything was always for a reason, I said, and I wouldn’t be me without it. It never occurred to me to feel anything, only to say it.
Recently I went to see a body psychotherapist in Cambridge. He asked lots of questions and I told my story. He leaned forward and stared at me, then asked me how I was telling this story without any emotions. I didn’t understand the question. I thought that telling my story was the emotions. I had no idea that the crying and shaking, freezing, fighting and flighting were all my body and brain desperately trying to get me to stop and actually feel. He was too touchy, feely and I didn’t like it, so I never went back, but it did make me start to wonder about what he had said.
Over the last 2 years, I have tried to find help for what I initially thought were just the physical symptoms. I have talked and talked but no-one seemed to understand who I am, what I am saying and what it is like to be me. I finally realised what he meant. It is what I have been doing for as long as I could speak. I play the part that I think is needed or going to be wanted. They hear my words and look no deeper. The problem is, that I have kept these feelings hidden from myself too and am now having to confront far too much at once and am completely overwhelmed all of the time. Just trying to answer a simple question from anyone reduces me to a shaking, crying, crumbling mess.
I thought that I was being the best me possible but it is possible that I wasn’t being me at all.
I don’t remember much about my childhood, but I do remember that I was on my own lots. During the lunch hour, I helped the teachers fill up the paint pots or tidy the scissors. I refused to gallop around the playground pretending to be a horse – how ridiculous, and I tried to befriend every waif and stray that came along. I would have a friend for a while, but then they would move on and I never understood why they didn’t take me with them. I never, ever, realised any of this until I looked back with my new filter of ASD. I feel quite embarrassed and sorry for myself, but it does explain a lot. When I tried to join groups, I would spot their lack of organisation and ideas and offer to sort it all out for them. They would often suggest a request or complaint that needed explaining to someone else or to a teacher and they would ask me to do it. They always promised to be with me and to back me up. They never did, but I just presumed that I was more confident than them and less scared of authority.
I seem to always end up in the wrong place at the wrong time. When I was at University everyone was posh and had supportive parents and I couldn’t afford a gown so didn’t even attend my own graduation. And, no-one would have been there to watch anyway. When I worked in pubs and tried to instil feminism and anti -racism and anti- homophobia it really did not go down well. I was stuck with my abusive boyfriend since all my Uni friends – who were not friends, I now realise – had left me because I didn’t leave him. I could, and probably will write a whole new chapter on why women like me don’t leave, but until then, I was left fighting for everyone’s rights in working class mining pubs across Nottinghamshire in the early 1990’s. I thought that the women would love an advocate, and I thought they would all love to learn that criticising the sexual choices of Freddie Mercury would result in them getting barred from the pub. They did not. The women thought that my outspoken behaviour and refusal to make my man some ‘snap’, (supper) was justification for my beatings, and kickings, and worse. Just to point out that I am now privileged enough to understand that in the deep south – Essex – supper means some sort of informal food with friends whilst dinner means a candelabra, linen napkins and amuse bouche. Supper to me meant, and still does, chips and curry sauce after the pub or marmite on toast. But then, I did not go to finishing school did I?
When I was poor and lonely, these people didn’t understand me because they all came to University with nice supportive parents in what seemed to me to be large unnecessary cars and received things such as birthday presents, meals out, clothes and places to stay in the holidays. I didn’t judge. I was jealous but not in a normal way. I am never jealous of anyone else’s achievements or success, or ability to live their life. I simply don’t believe that this is fair on them. I am only jealous that I have not had it and can only look on in awe and wonder. I am jealous for myself but never, ever of them. I hate jealousy and do not understand its use.
I have always been told that I am either black or white in my thinking, but because a lot of my thinking is about facts or lies, or truth and justice, I don’t really see how there can be any grey areas. To me, grey areas are for people who sit on the fence, and those people never change anything, and leave all of the caring about stuff to other people. I thought that my way was nicer and kinder and more caring and compassionate, because I fight for rights, and against injustice and hypocrisy, but I now wonder what the point was at all? Everyone else has been watching Eastenders and Love Island, and not caring much about anything, but they seem to be loved and wanted by society a great deal more than I am.
I love the truth. The truth is cool and dependable to me because it can’t be disputed and so I can’t be wrong or bad for thinking and knowing it. Or so I thought. Turns out that people don’t like it and don’t want to know about it. It would probably have been a good idea if someone had explained that to me 50 years ago. But, I probably would have told them that they were wrong and carried on with my way regardless.