I had no idea that we weren’t all following the same script with the same rules.
It will come as no surprise that I have made autism into my new special interest. I have read 15 books, hundreds of articles and probably thousands of posts and tweets by women who are diagnosed, by women who are self -diagnosed, and by women who are waiting and wondering.
Of course, for complete certainty and accuracy and honesty I can only talk about me and I certainly don’t want to suggest that we are all the same because that is clearly not true. But what does seem to be true is that there are common themes which are being discussed over and over again. I am shocked by just how many women are really struggling, and I am shocked but also curious about the way the story is being told. These women write like I do. They tell the truth and are articulate and passionate. They write an essay for every question or answer, and are honest, sensitive, compassionate and caring. I am amazed to read so much that sounds just like me and have been moved by the lovely comments I have received in response to my own writing.
That did sound rather arrogant didn’t it? Maybe I have just highlighted the first problem with translation. I thought that I was simply stating some stuff that is true, I do it often, I presume that truth is interesting and indisputable. How can it cause an argument if it is true, I think? But maybe the ‘muggles’ hear something different? Do they think that I am over- confident and dictatorial? Do they think that I am saying that I know it all, when actually I’m appealing for help and advice because I know nothing? What I say and feel and mean doesn’t seem to be seen and heard in the same way at all and I end up feeling confused and hurt.
But what really upsets me is just how frequently I am reading about struggles and suffering, loneliness, rejection, isolation, anxiety and quite often downright despair. Just like me, there are women who feel like they don’t fit in, and just like me they don’t understand but really want to be understood. As I said in my previous blog, I know that there might be many autistic women who are really happy and are coping and are proud. But they don’t seem to be posting and so it is harder to hear those voices and anyway, right now I’m concerned about the level of distress that is hiding in plain sight out there. Why is no-one talking about this and trying to help? Why has the neurotypical community convinced itself that autistic people like being alone? Maybe because that makes their lives easier? Easier not to see and hear?
I feel incredibly guilty because until I was told that I was autistic, I had no idea whatsoever about autism. I, like many of the ‘muggles’ that I am now encountering, thought it made someone a little bit different. I thought that it was like a sort of extended version of OCD. My family always thought that I was OCD. I can’t stand to see wires, need all cupboards closed and absolutely insist that all fixtures and fittings are equidistant from each other. I had no idea that virtually all of my physical, mental, emotional and existential issues were symptoms of my unknown autism and that they were crawling, one by one, out of the crevasse and over the rim, demanding to be seen and heard.
After writing a diary style rant about my struggle with being me, and not really understanding who I am, and why I am, and why, what happens to me and around me, does, I received some interesting comments by people with what was Asperger’s, who suggested that I seemed to be missing the obvious diagnosis. I was insulted and offended. I am an outgoing sociable woman who has no interest in numbers. These people kindly told me that I was probably struggling because of my inability to follow social constraints and because I was far too much too soon and would naturally send everyone running for the hills. I was totally shell-shocked. Well no, I wasn’t. To compare my reaction to someone who has witnessed, and experienced unbearable horror would not really be ok. So, I was shocked and certainly stunned by this information. I thought that my fun, over the top, noisy, dive straight in vibe was the best thing about me. I had no idea that this was yet another thing that people apparently don’t like. Blimey, there’s a lot they don’t like isn’t there? I am 51 years old and had absolutely no idea that rules of acquaintance existed. I thought that finished with Mr and Mrs Darcy, and even they were able to break conventions, so why on earth can’t I?
One lady, who I know was trying to be kind, said they I came across as some crazed Tigger and that naturally no-one would like this. I had indeed been told that I was Tigger many times, but I thought that it was a compliment. I thought that it was applauding me for being bouncy and loud and for never stopping. I guess that whilst being the lovable Tigger, I had never actually paused to think about why no one was hanging around long enough to express that love. Her comments changed my life completely and led me to my missing jigsaw piece, something I may never have done without her honesty and I will forever be grateful.
So, I researched and read, and researched and read. I couldn’t possibly be autistic. We have all been brainwashed by the Rainman stereotype. I’m sure that is why my friends laughed and then scoffed at the idea of my self-diagnosis. One friend said the usual thing of ‘well we all have that’ and another friend pointed out that as I am a fully integrated member of society it couldn’t be possible. All of this was also a shock, as I realised the extent to which no-one actually knew me at all. But I am certainly proof that you can mask and camouflage this to a point where you will never be believed, even by yourself.
Why was I so anxious to be diagnosed with this you ask? Well, at first, I really wasn’t. It didn’t sound like it represented me at all. But then, with more reading and more research, I learned and realised that the way this is seen in girls, and probably even more so in adult women, is completely different to everything that we have been told. Sadly, we have all, only been exposed to the stereotype of a mathematical boy who finds socialising difficult. Until recently this was what I believed too, and so I am certainly not criticising this belief, but since it was suggested to me that I am autistic, I have read and researched and read again – of course I have! It seems that the condition is often missed in girls and women because of the way we learn to ‘mask’ and ‘camouflage’ and because the assessment criteria is for boys and men. I now realise that every single thing I have read and watched has just explained the last 51 years, and so I probably didn’t need the formal diagnosis for me, but it felt like I needed it for everyone else.
I know that lots of men don’t fit the stereotype either, but I’m not going to pretend to be a voice for them, because I can’t. Who knew that there are women wandering around with successful jobs, and marriages, and children, and maybe even a few friends, with whom they chat and make eye contact, and yet they have been diagnosed as autistic, or they wish that they could find someone who would give them their diagnosis, or worse, like me for the last half a century, they feel isolated and confused about themselves, but don’t know why.
I downloaded and listened to a guide on autism written for teenage girls and their carers. This was an American book, so it is possible that we have not yet developed such severe social rules for social interaction: cheerleader at the top and then all the way down to the nerdy girl in the library. I think, or at least I hope, that we still have some respect for wearing glasses and reading, but my daughter, watching Love Island as I type, would tell me that I am wrong.
This idea of wrong is something I will definitely return to, as I really can’t see why my way of thinking can’t be the right one?
The autistic women who I am talking to are the most caring and thoughtful people that I have ever met. Why aren’t our skills and attributes better recognised and respected? All of the autistic women ask me how I am, despite overwhelming stresses and struggles of their own. My ‘muggle’ friends? Not a word. I posted my blog and not one of them even asked me if I was ok. Weird isn’t it? I don’t know if they are not really my friends at all – it’s happened a lot – or if it is simply the way that muggles deal with anything outside of their comfort zone. Lots of autistic women struggle to deal with the comments they receive and the reactions they encounter from the neurotypical community. They, like me, are told that either they can’t be autistic or that we are all autistic in some way. Both of these are sad, scary, insulting and wrong. But I never recognised it in myself, so without better awareness and understanding, how can they?
With my diagnosis I have finally found the missing piece of the puzzle. Placing it in, has unlocked the past fifty years in a way that I could never imagine I might have seen them. I am not, in fact, who I have convinced myself that I am at all. I feel like I always knew that, but my amazing ability to exist and to mask had finally started to convince me that I must just be an unpleasant and unlikeable person, or else why could all of this have happened and still be happening to me. This jigsaw piece is not an excuse for what I have said and done, but it could help me feel less guilty and ashamed of all of it. Since receiving the suggestion that I should admit to autism, I have cried continuously. Possibly I am grieving the life I could have understood better if I had known and possibly, I am just crying because someone finally understands me. Well more something than someone really.
I have never told anyone how it really is to be me because I didn’t understand it myself. I have tried to be helpful, honest and have probably been telling everyone just about everything that they did or did not want to know for the last 51 years. A sort of over emotional public information broadcast! But until now I didn’t understand how what I was saying and thinking and feeling was possibly so different from any of them, and that they don’t see or hear what I thought was clearly on display.
Why did no-one tell me the rules?
I have asked my husband and my children why they never told me any of this stuff. If they all knew that there are rules for behaviour, meeting people, saying too much or too little, telling the truth or not, expressing opinions and whether to say yes or no, why didn’t they tell me? They all admit that they just thought that I was a bit of a rebel who refused to conform. They thought that I was choosing to ignore the rules or the social conventions, when in fact, I had absolutely no idea that these existed, and I thought that I was trying my best to fit in. It seems that I was actually behaving in a way that would always make me fit out!
Women and diagnosis
I watched Tony Attwood on You Tube today, and he talks about girls and women with autism, and how they are being completely missed in the diagnosis procedure. He discusses how women do have empathy, emotions and imagination, often too much, and how girls try to fit in by being someone who can do something for someone, but that eventually, this results in collapse because trying to socialise on a planet to which you don’t belong is incredibly draining. I imagine it is very much like having to attend a dinner hosted by a prominent Chinese business- person. You would need to watch carefully in order to attempt to follow the rules and the etiquette. You could probably manage one dinner, but you would then need to retreat and collapse in your hotel room. Well imagine doing this every day for 50 years? No wonder I can only stay for short periods of time anywhere without feeling totally exhausted and on the verge of collapse. Most days now, I make an excuse in advance, and don’t leave the house. I am starting to think that I will do less damage to others, if I stay in here.
You are describing my life. How are you doing this?
I have now found and watched Sarah Hendrickx. The random x is rather odd but apparently not a typo. She seems to know everything about me. I really can’t believe what I am hearing. I have spent over half of a hundred years trying far too hard, with the wrong people and in the wrong way. She, just like me, made herself funny and entertained the class in order to try and be accepted. She seems to have done the same as me and said yes to far too much without any concern for the dangers or the consequences. An Albanian waiter in a New Jersey restaurant told me that he loved me and so I got in the car and was driven into the woods. Luckily, he was frightened by my meltdown and did let me shriek my way out of the car and onto the highway. I knew he didn’t love me. I’m not that stupid. But I didn’t think about the rest. She also discusses the idea of ‘maintaining’ friendships and says that lots of autistic people don’t remember to contact people. I have no idea how much and how often is appropriate. When I suddenly feel lonely and worried, I text everyone that I know with suggestions for meeting or random questions about their lives. Do I really want to know? Do I really want to see them? Nope. But do I want to be on my own? Nope. They never contact me first, ever. I guess that I should think about that. I think that they might believe that they like me, but if they pondered for a moment they might wonder why. They will never admit that it is because I plan, and organise, and often pay, and they have a lovely time that is really nothing to do with me, just what I have done. I feel quite sad about this.
Being seen and heard.
I have always been desperate for someone to know, and to listen, and to care, and to see me for who I am. Now I realise that I have very little idea who I am anymore, I can see how that is a challenge. I think that my family want me to be the me that I have convinced them that I am, except for when I completely meltdown or run away, they are not so keen on that me. Writing this and thinking all of this, is forcing me to report back on the life that I didn’t realise I had been living.
I feel ashamed and embarrassed that I had absolutely no idea how bad or wrong or just plain stupid my behaviour has always been. I thought that I was the best me I could be and imagined that others just couldn’t manage to be as helpful and friendly and organised and honest and loyal. I thought that they were jealous because they wanted to be me; I feel sick now realising that they didn’t understand me and they didn’t want me unless they could utilise me for a while, and they certainly did not want to be me. And I don’t blame them.
I have always said that my brain was a curse and that people who thought less seemed to be much happier. But I believed that if I used my brain for the greater good then I would not be wasting what came naturally to me. So, I perused knowledge and wanted to be the best in everything that I attempted. I wanted truth and facts and wanted to help everyone else be the better people that they could be. People should care about apartheid in South Africa, I lectured them all. Homophobia should not be tolerated I said, and smoking should be illegal. And don’t even get me started on the advice I gave to everyone concerning children and access to Facebook before the legally required age of 13! There are rules for reasons people!!
The wrong story.
I thought that the reason I had no memories of school and University was because I had blocked out the years of neglect and abuse by my family and the subsequent years of physical and mental domestic abuse. This made perfect sense to me and the specialists agreed. They said that if I could start remembering some stuff, it might free up some room for the rest to find its way in. This never happened and my image of myself remained as a fun, friendly and popular girl. Recently I was wandering around the park and my brain suddenly shouted at me causing me to stop dead. It said that I was telling the wrong story. This was not my story and there would never be any memories of this because it did not happen and had not existed.
And just like that, the protective scaffolding, that I had been desperately trying to keep taped together for over 50 years, fell apart leaving me to survey the debris of a life of loneliness, isolation and rejection. Sure, it means I can make a lot more sense of everything, but it is a sense of failure and pointlessness. I have wandered the earth seeking friendship and unconditional love. I have given out what I thought to be friendship and unconditional love but have ended up dejected and lonely never knowing what I have done or why I am always so wrong and so bad.
So muggles prefer lies do they?
I understand that the rest of the world has never taken too kindly to me, although I have never understood why. Now that I am reading about how neurotypicals behave and what they expect and tolerate, it is a revelation to me. No wonder they don’t like me!
Even though I may know the actual, real, indisputable facts, I am not supposed to say this? Even though I probably have some facts and statistics printed off in my handbag just in case, I am supposed to pretend that I really have no idea at all? Even though they believe something totally false, controversial or hypocritical, I am not supposed to tell them? When was someone going to tell me this?
I have been merrily chipping in, correcting and fact checking for nearly half of a hundred years without ever even considering that this did not make life better. I thought that everyone wanted to discuss and debate, and I certainly didn’t realise that people would be happier living in ignorance or denial. I would be happy to be corrected and to learn another side to the story if there is clear evidence for this. The more that I know about something, the better I feel. I adore people who are cleverer than me and from whom I can learn.
Well now I can understand how easy it is for religion to spread. If the truth, the facts, the research and reason don’t matter, then anything is possible. I think that we need some autistic people in charge of stuff around here then!
This idea that you have to lie to people, or at least not tell the truth has completely passed me by. Because I presumed that everyone had the same standards, I naturally thought that they would have told me the truth if I was saying or doing something that they didn’t like. They never did so I presumed that all was well. And most people upset me lots, but I don’t tell them, and I am not offended, just confused and struggling to figure out what I must have done. It always shocks and surprises me when I say something, and they are offended. I haven’t commented on many unkind and uncaring comments of theirs because I have blamed myself, but one thing from me that contradicts or challenges, and it is enough for them to leave.
I read a wonderful blog about a conversation between an Aspie wife and a NT husband. He explained to her that people like him had lots of layers which were like bubbles floating around them and that when meeting people or conversing, they just bumped slightly but didn’t disburse. He said that she, being Aspie did not have any of these protective layers. I see it more like brake pads. The NTs all have big soft cushioning pads that prevent the metal bits rubbing together. I don’t have any of those and so metal hits metal and sparks inevitably fly.
I would love to be cushioned and cossetted by those bubbles; I would have loved the supportive embrace they must give to those that are lucky enough to have them. But I don’t think I can just go and buy some and clip them on. They would be too fiddly and uncomfortable anyway.
Changing the plan.
I always get very upset when someone changes the plan or doesn’t follow what has previously been agreed. They all think that I am being ridiculous, and they get very angry with me. I can feel my body and brain convulsing with confusion, but they think that I am being awkward. I always presumed that I was just a bossy, control freak who couldn’t tolerate a difference of opinion. My fault, naturally. As it turns out, the truth is, that my body and brain don’t understand the new script, with the new schedule, because they haven’t received a copy. I ask them over and over for an explanation about why things have changed. I ask them to tell me why they have done this. I can’t understand why no-one will answer me. They walk away or look at the floor like they are waiting for the toddler in the supermarket to finish the tantrum. The more that no-one answers me, the greater the overwhelming darkness of not knowing and not understanding becomes.
When I say “I don’t understand,” and “why would you do this,” there is no underlying, more sinister meaning. Other people seem to see one. They think that I am being awkward, or rude, or am criticising them unnecessarily. For the first time in 51 years, I now realise that they don’t see the small child in front of them who is desperate for some kind words that will explain what is happening to the world around them. They don’t see that I need a new route to follow and that I am lost in panic until I have one.
Muggles seem to think that if they are quiet, walk away, don’t respond or don’t tell the truth, then it will all go away. In fact, I am told that often for them it actually does. Who knew that the thoughts, questions, doubts and confusion don’t keep stamping in their brains demanding to be heard and answere?
For me, silence brings nothing to cling to other than fear. I need a story, and so will fill the silence with one of my own making. I presume that this story will be a negative one, filled with rejection and criticism. In this story I am always wrong, bad and to blame. It is the only story that I have ever known so have nothing else to refer to. Every moment of every day and night is filled with fear for me, and it does not disperse unless someone helps me and gives me a new story that I can be part of.
Silence is the void of not knowing and not understanding, that I am trapped in. I guess that this is why I annoy everyone by taking too much and never shutting up?
Silence leaves me in a chasm of despair where the only possibilities are of course hurt, rejection, being wrong and being bad.
Gifts – I do not see this. Why should I see this? (The line in my head is Mrs Bennetts!)
The absolutely worst thing of all is receiving presents. I have kept this hidden from at least most people for most of my life because I presumed that I was a really unkind and ungrateful person. I have not kept this hidden from my family who therefore think that I am an unkind and ungrateful person. I have listened to my son say that the convention of surprise gifts is ridiculous and why should he buy something for someone that they haven’t asked for and probably don’t want. Although I agreed with this, I also recognised that this is not the perceived wisdom of everyone else and so I tried to do it their way.
I only succeeded a little bit, on occasions, but I really did try. I start to worry and panic days before a situation that might result in a gift. I practice my responses days before. Why would I want something that I didn’t choose and probably don’t want? Why is this something to be grateful for? Why do I have to pretend to appreciate something that I don’t like, don’t want, probably don’t need and did not have any involvement in choosing? Why can’t I say this without causing offence? Being given a gift that ‘isn’t me’ really upsets me and it can be days or longer before I calm down or stop thinking about it.
I have never wanted to lie about gifts and have found that really difficult and ridiculous, but even worse was Father Christmas. I did not understand why we were going to lie to our children about some crazy man who would only visit the house if they were ‘good’. And I did not understand why they should get lots of things for which they did not need to thank anyone and did not even need to respect because they could always point out that we didn’t pay for it. I said that it would backfire and that our son would be really upset when he found out. He was. He couldn’t comprehend why we had lied in this way and I completely understood but again was sucked into conformity and told him that everyone needed a big of magic. Lying is magic now is it? I will never understand people!