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Women with Autism – misdiagnosed and mis-understood.

Hi, I am Tracy.  I am a 51 year old retired English and Drama teacher.  I have a husband who is trying to stand by me and 2 amazing children who will be furious if this is ever published. My own diagnosis has shocked and confused me, but after reading books, articles and so many posts, I can see that this is happening to women everywhere.  We seem to be speaking a different language and I really want to try and understand.

After years of misunderstanding and misdiagnosis, I finally know that I am autistic. I can’t see the light right now, but am going to start this and go in search of it.

Just a list about me – the abridged version.

I pretend to be spontaneous and fun; it appears that I am, but what they haven’t seen is the hours and days of lists and plans and panic.

I plan and plan and over plan everything. I have to know what is going to happen and when. I thought this was just me being super organised. Everyone tells me that they can’t be expected to adhere to my schedule. I thought that I was helping them, but maybe I have been helping me?

I think and plan and pack and re-pack at least a week before a trip.  I have to have my special things in my bag next to me and easily accessible.  I thought that this was just good organisation and management but never thought about the panic and distress it causes me if this doesn’t happen.

I need to tell everyone every opinion I have, and I need to keep telling them until they agree.  I need them to say I am ok and right.  I always have lots of facts to back everything up and cannot understand how people don’t like hearing this and how they can dispute facts.  They can hold a different opinion, sure, but to me, facts are not disputable.

I have to stick up for injustice and unfairness.  I cannot bear bias and jealousy.  I lecture people with my research and facts if what they are saying is based on rumour or lies.  They don’t like this, and I don’t understand why.

I care too much about everything and not at all about some things.  I jump in to help when it is maybe not needed or wanted or maybe when it will not be valued or will be rejected.  I understand none of this.

I need a calm routine and don’t cope well if I can’t prepare to leave the house in the sameway every day.  They laugh at me forgetting up 2 hours before an early trip and I pretend that it is funny, but it is not.

I have to sit where I want to sit or else I am very distressed and cannot enjoy anything about what I am doing.  In the theatre or a restaurant or a train or a plane etc. The wrong seat or view or access to the toilets would make me uncomfortable and the more I am then told to stop being ridiculous, the worse it gets. 

I cannot bear clothes that itch or scratch or constrict. I would rather cut or rip them off. Same with jewellery.

I panic if a top is stuck over my face or if a necklace will not immediately undo.  I feel trapped and attacked and can’t stand it. 

Noise annoys and upsets me.  Barking dogs, ticking clocks, loud voices or music. Inconsiderate noise or behaviour really really upsets me, and I want to make it stop. 

I am terrified of toilets – generally.  If I see something horrible, the image will stay with me forever and keep reoccurring in my mind as an image.  This makes me wretch. 

It is difficult for me to change my running route and very difficult to start a new one in a new location.  I can’t make mybody do it – feels wrong, like a punishment to myself.

I am obsessed with dieting and feel sick and guilty all day once I have eaten something.

I cannot stand to eat something that I don’t want to eat.  They all tell me off for it but, I know what I want and anything else will make me worry and panic.

I rock back and forth and tap my feet when I am trying to think or to worry or to calmdown.

I have terrible IBS that gets worse with what I perceive as stress.

I am totally drained after a conversation.  I feel like I have had to concentrate really hard on trying to be ok.  I never succeed, but then I need to run away,to be alone and to cry and sleep.

I am always, ALWAYS asking myself and Pete if I have done something wrong, did I say something wrong.  If I meet people I always ask if I behaved, did I do anything bad? I am always in trouble for something.

I have always tried to say yes in the hope of being included; I never know when to say no. 

I get lost in buildings.  I can’t find my way back outof the loo and need to check the exit on my way in.

I got stuck in a hotel spa and cried because I couldn’t find the exit door.  

I have had over 35 jobs.  I leave because I don’tagree with their methods, principles, morality, or because I am scared that something is changing, or that they don’t like me.

I never stay in a gym class because I can’t copy or converse.

I made friends at school by being funny.  I entertained them and I thought that they liked me.

I had no idea about sex and had no idea where to put a tampon.

First meetings – always good but I have nothing else to say after that.

Most conversations I instigate are either lots of questions about them, lots of questions about stuff, or planning something. 

I am so much happier somewhere where the language is different.  I don’t feel obliged to speak to everyone andthey don’t speak to me.

When I am criticised for saying something that is true, or when someone is offended by me just existing, I tell more truth.  I saythe absolute truth of what I am thinking. But it is not what I am thinking, it is a fact or a controversial opinion.  I see now, that is not at all how I am feeling.  I never realised thatbefore.

I like to do lots.  I like to go to lots of places and not to get bored in one place.  But, I have to plan it and keep my routines and things around me.  I get very stressed in a new place and feel really uncomfortable and unable to relax. I thought that I liked the continually moving and changing but maybe Idon’t because I am always upset.  If itis not what I expected, then I am very unhappy and want to leave.

If there is no fresh air or the windows won’t open, then I don’t want to stay and find it very difficult to stay calm.  It makes it worse when everyone says that I am moaning again and that nothing is ever good enough for me.  If it is good enough then it is, if it isn’t good enough, then it isn’t. 

I cannot rushing.  I need each action or movement to be planned and to work.  I would rather wait an hour for the next train than try to run. It means that I didn’t plan well enough and shouldn’t be doing it.  I don’t want to be forced to pretend that I’m ok with this. 

I don’t like it if the plan is changed. 

When I say that I don’t understand, it is because I want an explanation so that I can understand.

If you ignore me or I hear silence, I will fill it with doubts, worry and fear.  I will complete the story and can only base it upon what I have known before. 

If I see a date, I remember whose birthday it is.

I think about a word or a topic and then, there it is. In the paper or magazine or billboard – just weird.

Department Stores- too big, too hot, too confusing.

I can’t walk in heels and can’t walk on uneven surfaces at all.

I can smellblood.  I could smell when my period was due.

If I am wrong and bad, my body doesn’t work, and I want to tear my skin off.

I have to‘nest’ and make everywhere a home or I will not feel comfortable.  This sounds funny, but it isn’t.

I have to work out everything backwards.  What needs to happen at the end?  I think this is a positive.

I read and read to learn.  Everyone said I was a know it all when I had kids, but actually I knew nothing – hence the books.  I really didn’t understand what I’d done wrong.

I need to get my point across and won’t stop until someone makes me feel listened to and valued.  They don’t.  They just reject me more.  But I don’t stop.  I don’t think I really understand any of this.

I have to make sure that everything is organised and can’t understand when I am told to just let things ‘go with the flow’.  To me that is awful.  So much could go wrong and how will I know what to do?

I presume that everyone would like to hear my new thought or opinion.  It appears that they don’t, and I am baffled by this.  I want to hear theirs and it is not my fault that they don’t have one!

At school they bullied me for being clever and wanting to learn so I told everyone that they would fail and go nowhere because they refused to learn.  They didn’t like me, and I really didn’t understand.

I was upset at school by bad behaviour or disrespect. I told the others this and told the teacher if they were doing something wrong.

I was always trying to play with them, join the group.

I was neverpicked in PE. 

I didn’t understand clothes, make-up or gossip.  I never ever understood being two-faced. Thought honesty was better.

People always lie about me.  They make up something so that others think I am bad.  This has happened to me lots.  I have no idea why. 

I have written letters to anyone who I think that I might have upset, and I have written letters to everyone who has upset me, but I have never sent those.  I have them so that I can read them to myself and think about if I did anything wrong and why they were unkind to me. 

I preferred to talk to the bus driver than the other kids. 

I told everyone not to smoke and they hated me. I knew that I was right.

I cannotstand to see wires or plugs.  I have to hide and tidy them.  I do not like a hotel/apartment if this happens.

I only like to drink out of certain mugs.  I prefers shapes and don’t like normal ones but can manage if they are patterned.

I never drink out of the can.

I don’t want to watch a film if I don’t know the ending. I am very upset when made to do this. 

I cannot stand any kind of violence in anything.

If someone’s partner dies or disappears then I never watch again.  Kate in Heartbeat, Rose in Dr Who, Josh and Donna in The West Wing and Matthew and Mary in Downton Abbey. I have just watched the last episode of Designated Survivor on Netflix but don’t tell my husband.

I talk too much, too soon.  I launch into conversation and ask lots of questions. I thought that I was being nice. I had no idea there were rules about this stuff. 

My daughter says that I am completely different when I talk to someone else.  She says that my voice changes and I am over eager and ask lots of questions with exaggerated interest.  Also I never know when to stop.

I talk to everyone, everywhere.  I always ask them about them.  I never know when to stop.  I think that I have to speak to them, that it would be rude not to.

I write lists of what I want to say.  I research everything and print off lots of evidence/ back up. It is always in my bag in case I have to talk to anyone. 

I have already written a list for a trip in three months’ time so I can make sure I have time to get up, go to the loo, run and have time to calm down again.  No-one knows this and they will think I am fun and spontaneous when we go.

I can’t cut anything with scissors or with a knife. I slip and often slice my fingers without noticing.

I like all of the doors in the house to be open so that the room is seen, but without any clutter as you look in.  I need the rug to be equidistant from the fire and the sofa and am upset when it is moved.  I like the coffee table to stay where I have placed it and do not like furniture touching each other. There must be a gap. 

I need to know exactly what we are doing, seeing, visiting and then to plan backwards.  I need to know where we are eating and plan the time we should leave to get there.  Any prospect of being late makes me very nervous and unhappy. 

I can skimread information and find the main points – I thought that everyone could.

I see aproblem and can immediately think of ways to solve it – I presumed everyonecould or should.

 I tell the truth, seek out the truth andrespect hearing the truth – I have learned that not everyone thinks like this.

I am not offended by opposite points of view but am upset when mine are used against meor to dislike and reject me.

I try to chat and appear interested, but it is incredibly draining, and I can only cope for short amounts of time after which I need to sit and be quiet and probably shakeand cry.  Some of this is my CPTSD but maybe some is actually Asberger’s – who knows? 

I hate feeling like this. I wish I wasn’t me and often wish that I didn’t exist. 

I break everything.  Light bulb fittings, every smoke alarm and anything that is too fiddly.

I can’t use scissors or tin openers and lose patience with these items very quickly.

I look after everyone and try to make sure they are all listened to and cared for and that everything is organised for them.  I do all of this far too much.  When I ask for help, I am shocked to find that I am rejected.

Looking back,I realise that most people who I thought were my friends were just using me as they passed by.  Some were users and I facilitated lots for them. Some were abusers and some were narcissists.  I made myself available to help or to entertain. They ditched me or moved on.  I’m not really sure what I did or didn’t do.  Nothing seems to be the way I had imagined that it was. 

I don’t actually think that I have ever had a real friend who liked me unconditionally and accepted who I am.  When I have asked for understanding or help, they have all faded away. 

I tell everyone everything and put thoughts and feelings on Facebook.  My daughter told me this was not ok and that I should stop, so I have.

I thought that I was super sociable and would have filled in an AS quotient to say that,until I thought about it, and realised that I was trying to be sociable but failing miserably.

I likewearing hats; they feel like protection.

You will hear me and see what you want but not what I need.

You will probably tell me that we all have this.

You will say that it must be ok now that I know. I have no idea what you mean.

I will try and not show you me but sometimes I’m too tired to get on stage. Can’t get the costume over my head.

Maybe I’m not so bad after all; maybe I am just autistic?

I am going to go back over 50 years of masking in order to unravel why neither I, or anyone around me, including a parade of specialists, had any idea that I was autistic. Most of the misunderstanding and misdiagnosis made things a great deal worse for me and I know that the same thing is happening to so many others.

I am so incredibly sad that there are women suffering in silence, ignorance and often isolation.  I’m not pretending for a minute that we can change this overnight, but with awareness and education surely we could all understand more and be in a better position to help?

This is not meant to be a sob-story about me, but I would like to talk about Autism/Asperger’s in women because I know that lots of people look at me and think that I can’t possibly have this thing.

It turns out that girls and then women have learned to ‘mask and camouflage’ early on and so their symptoms and struggles remain hidden.  Girls often learn to ‘mirror and copy’ and like me are often enrolled in drama/ acting lessons.  This provides them with a framework for life and a script, so no-one notices their autism/ Asperger’s.

There is a lot of discussion and debate about the labelling of high and low functioning.  Clearly, some people experience such severe and debilitating symptoms that life is far more challenging in many ways than for those of us who, on the surface, are functioning fine.  The problem with this seems to be that it can be hard to tell, and most women with Asperger’s prefer that they are the judge of how they are coping and not the person looking in and presuming that they are ok because they appear to be ‘high functioning.’  Lots of women say that the high functioning bit is what those on the outside want/prefer to see.  I think this is certainly true for me.  Even worse, is that I believed I was the person that I had created.  I always wondered why I had no memoires but guessed it was because abuse and trauma had blocked them out.  My diagnosis 2 years ago of Complex Post Traumatic Stress Disorder seemed to explain a lot about me and many of the physical symptoms, like fight or flight and extreme anxiety, are common to both conditions.  To be honest, I now see that my CPTSD was caused time and time again by my un-diagnosed autism – but that’s another story for another day. 

Writing things down really helps me to feel like I am talking to someone.  Hopefully, I might be.  I need all of the thoughts to go somewhere and to exist.  They never go away, but with every wave of panic I am able to sit and read them, always out loud, to myself over and over.  There are too many to keep them all stored and tidy in my head. I can only start to make sense of something if I write it down and then hear myself saying it.  I can be the writer, the thinker, the teacher, the listener, the carer and the counsellor.  Maybe one day someone else will listen and understand, but for now I guess I will have to console myself with me. 

I know how my life has been and how it is now that I have a diagnosis.  Not for a single minute am I suggesting that I can or should, understand anyone else, although I will always try.  But the reactions that I have received to some of my comments from other women make me think that there is too much unnecessary suffering and struggling which just maybe, could be helped even a little, if everyone knew more, understood more and could care just a little more.

I am going to talk about me but not because I am selfish.  I have read so many posts, comments, questions, books and articles about women with Autism and have seen and heard so many of the same things over and over.  It is clear to me that there is an unbelievable amount of suffering, struggling and misunderstanding. I am definitely going to discuss this because I really believe that until there is more awareness and understanding from outside of the autistic community, I’m not sure how this is going to change.  I can only speak for me though because it would be unfair to pretend that I understand anyone else.  I understand lots, and honestly feel like I am reading my own words and thoughts in much of the literature, but still the only full picture that I have is of me.  And even that is a very fuzzy image at the minute, given that I have spent over 50 years convincing myself that I was confident, capable and a little bit crazy. 

Over the last 40 years I have written lots about me.  Always the same, always wondering what is wrong with me, why I don’t fit in, why I am rejected, am in trouble etc etc.  I am going to think about some of this because it all makes perfect sense now that I know what ‘is wrong’ with me. Before my diagnosis I had written many chapters trying to understand myself and they have become an informal list of ‘symptoms’ or ways in which my life is affected by this.  I am going to include these because it might just resonate with someone who is trying to understand themselves.  I read lots of personal stories which were incredibly enlightening and helpful, but what I really wanted to read about was what it was like to have this on a more practical level. I hope that by discussing the many bizarre ways this affects me, it might just help someone else on their journey of recognition and diagnosis – self or clinical. 

This is all very new for me and is something that I am not really comfortable with so some of this will not be positive and hopeful because that is not how I feel right now.  I am going to take this day by day and hope that you will join me along the way.  It would be nice if someone listens, great if anyone understands and brilliant if I can emerge stronger and braver knowing who I really am. 

I did worry about writing and hesitated in fear of being judged, hurt, misunderstood or rejected. But then, I thought about my life. I have spent over half of a hundred years trying to avoid all of those; trying to fit in and be the best person I could be. Nothing has worked and I have encountered all of them on a daily basis. So, to be honest. What have I got to lose? How can it possibly be worse if I actually try to be the real me?

And if, indoing so, I help just one little girl not to have to live like me for 50 years,well then it will be worth it.

Tony Attwood has written extensively about girls and women with Autism/Asperger’s. He says that ‘Clinicians need a paradigm shift in understanding the female presentation.’ Girls ‘use specific coping and adjustment strategies to camouflage or mask their confusion in social situations or achieve superficial social success by imitation.’

Recently I posted on a group which supports women with Autism.  The response was overwhelming and incredibly humbling for me.  So many women said that they felt exactly the same and so many women encouraged me to keep writing.  I thought that if I did this for me then I would be scared of being criticised and judged.  But after reading their comments, I realised that it didn’t matter.  I will judge me if I sit back and say nothing when I know that I have a voice. 

There is lots of information and support within the autistic community, but there seems to be very little that crosses into the neurotypical world.  It is exactly this problem that causes so many women to live undiagnosed and misdiagnosed because our idea about autism in women is often completely and utterly wrong.

I would like to change this by including you in my thoughts and fears and life.

My diary for today.

As I start writing this, I feel pressure to be cheerful andto give you a tale of positivity and hope. There might be some of that later, maybe, hopefully, but there reallyisn’t any right now.  In July I wasdiagnosed with Autism.  This has been sucha shock that I haven’t really started to comprehend it all yet.  But,I am going to start writing because, wellbecause I just have to. My new diagnosis might help explain why I always haveto put my thoughts into print?  If justone thing that I say or feel resonates with another aspie, (I learned a newword), that would make me happy.  I liketo help people.  I have spent my lifetrying to help everyone and have never understood why I have ended up alone,rejected and usually bullied and taken advantage of.  My new diagnosis has given me a lens withwhich to look back and try and unpick what, when and why, but just now, theprospect is too overwhelming and terrifying, so I am deflecting doing anythingand instead, writing this. 

For many reasons, I am struggling to find positivity and hope, and I will try to explore these, but I also think that the desire for everything to be fluffy and fine might well be one that has been pushed on us by the neurotypical world – another new word.  I prefer to use ‘muggles’ but there is probably a copyright on that.  I imagine that if anyone is struggling in the same way, or in a completely different way, they would be patronised by protestations of perfect fairy tale happy endings.  Also, to suggest to the neurotypicals that this is how it is would be disrespectful to the autistic community and would allow neurotypicals to continue in ignorance presuming that everyone and everything is fine.  There are people like me and not like me, all around us, that are not fine at all.  I would like some care and kindness; I want to understand myself more and hope that in doing so I can help and understand others. 

Please don’t pounce on me because I am not happy.  I have read lots of inspirational bookswritten by aspie women.  They do seem tofind some contentment and solace and maybe one day that will happen to me.  But these books do also confirm some of myworst fears.  They talk about isolationand very limited social interaction and friends.  I have spent my life trying to be sociableand to make friends and I now feel that my hopes and dreams are fadingaway.  It is confirmed that I can’t havethese things, they are not for people like me. 

I know that I will insult and offend all of those people who are happy and comfortable with their autism.  I don’t mean to.  I am in awe of them and am both impressed and envious in equal measure but right now I don’t want this to be me.  I want to be the person I thought I was.  I pretended for over 50 years to be confident and capable and it was only when my physical symptoms overwhelmed me that it all started to unravel leading me eventually to my diagnosis. 

I always end up being wrong and bad despite trying so veryhard to be the complete opposite.  Idon’t understand anymore today than I have for the last fifty years.  I can’t start to embrace this thing becauseit seems to have caused so much damage and destruction.  The wreckage that engulfs me seems unsurmountable;I can’t find a way to rebuild or even to escape.  And there is no-one to help me.  All my life I have just wanted someone tolike me and to stand by me as my friend.  I have done exactly that for so many peopleover the years, but sooner or later something about me has annoyed them andthey have extricated themselves and disappeared leaving another layer of rubblefor me to try and fight through. 

Something about me is far too strong and so I never give up.  I get up every day and carry on withwhat appears to be life.  I don’t wantthis thing either.  I want to be able togive up.  I don’t know what that means orhow to do it; I’m not brave enough to kill myself and I’m not brave enough torun away.  No one would care or notice ifI did either anyway.  In fact, they wouldprobably be relieved.  I have no-one totalk to and so all of the thoughts and fears and questions swirl around, butwithout answers, or hope of reassurance, I remain alone with them.  I can’t dispel them, and I can’t ignorethem.  Every minute of every hour,whether awake or asleep: it’s the same. 

My next blog post will attempt a translation guide. It’s really for my husband! Also I will take a look at the common traits, symptoms, behaviours and thoughts that seem to affect so many of us. Women with Autism – misdiagnosed and mis-understood.

Let me try and translate.

During a recent training day which focussed on the presentation of girls and women with Autism, Tony Attwood discussed what he calls ‘the Italian traffic lights.’ Just as Italian drivers often seem to fail to recognise the red light, so autistic girls and women often don’t see the signals to stop. I have been thinking about this and can’t really decide which way to see it. Should autistic girls and women be pressurised to stop just because it is expected, or more acceptable to do so? Or should neurotypicals learn to expect, encourage and embrace more? I think that part of the problem is translation. And when I say problem, I simply mean the reason that so often there seems to be a misunderstanding or miscommunication. The result of which leaves the autistic girls confused, bewildered and often hurt and rejected. I know that I can only speak for me and so I will. But in my reading and research I have found that there are many similar traits of behaviour, thought patterns along with mental and physical symptoms which to some extent we do all seem to share.

The red traffic light.

Well, until I started reading and learning about autism, I never knew that there was such a thing as oversharing or over disclosure. I always thought that everyone was like me and that everyone would like me. I thought that bouncing into situations and asking loads of questions was the perfect way to make friends and to make them feel wanted and needed. I didn’t talk about me. I presumed that they would ask next. They never did and I spent hours and days and months which became years asking myself why. After every encounter with anyone I have to disect every word that was said. I write everything down as extra protection because I can then read and read and re-read. I want to check if I have said anything wrong or bad. I want to try and understand why my efforts have not been well received.

I presumed that everyone was the same, more or less. I presumed that I was just a little bit more confident and capable and that my drama classes were helping me with my amazing ability to talk to anyone, everywhere about everything. To find out, at age 50, that there are rules about this is unbelievable. Why did no-one tell me this?

When I asked my daughter why this was never pointed out to me, she said that they all thought I knew the rules but that I loved defying them and breaking them. For over 50 years I thought that I was trying my best to fit in but all the time I was actually making sure that I would always fit out.

So if I am understanding this correctly – the expectation of the majority of neurotypicals is that there are stages of friendship and of conversation? Apparently it is not acceptable to start at stage 5 then? Hmmm? I realise that because I am in the minority it is unlikely that this will ever change and so I realise that understanding this earlier in life might have been helpful, but I am still left wondering why my way isn’t better? Why waste time on meaningless small talky chit chat when you could dive in and talk about the things that matter to someone straight away?

I am not trying to annoy you, or intrude upon you, or encourage you to reject me. When I over-share and disclose too early, I am simply trying to be your friend. You don’t have to want me, but it would be nice if you knew this.

The problem for autistic people who over share too early is that this seems to expose them to users, abusers and narcissists. The more ‘normal’ neurotypicals just run away but the personality disorders hang around because they can smell a gullible, naive, lovely loyal demeanor.

Asking a question.

I don’t know how often I have to say this. I ask a question because I want to know the answer. How is that so difficult to understand? See what I did there – just then? When I said, how is that so difficult to understand, what I meant was – how is that so difficult to understand. It was a genuine question to demonstrate something that I don’t understand and by way of a question, I hope to learn more as I hear an answer and explanation. But, if my new research is correct, I now realise that when handed over to neurotypicals, my simple question could have been interpretted in a myriad of ways with levels of purpose and intent more complicated than a Dickensian novel.

Is it rhetorical?

Firstly, there seems to be a belief that I am being rhetorical. If I now ask how it is possible that when someone asks a question it is easier to presume they already know the answer rather than realising that they just want an answer, would that be rhetorical too? Blimey being NT is jolly difficult. Can’t you all just ask a question, receive an answer and move on with life?

Please let me be very clear. If I ask a question it is because there is something that I don’t understand and there is something that I would like to understand better. It is in many ways a compliment to you because I have entrusted my ignorance to you and am waiting for your words to help me learn. I have not asked you a question because I don’t like you or because I want to offend you or because I want to suggest something else!

Am I being sarcastic?

Next, the presumption of the type of question as discussed above, is that I am being sarcastic. Again. Why?? If I wanted to be sarcastic then I would tell you that. The benefit of an autistic friend, family member or colleague is that we will tell you the truth. If I wish to be sarcastic then I will use my clever words to patronise you and I will tell you why. If I wish to ask a question then I will ask a question. Please stop confusing the two.

Is it because I don’t like you?

Ok so here goes. Now I am being sarcastic and rhetorical – why yes of course, naturally I would ask you a question because I already know the answer and in some way want to offend you. No!! I wouldn’t do this and why would anyone even think this could be a thing. And, before any muggles tell me that I can’t possibly be autistic because of my marvellous use of irony and wit – don’t! Read my blog and stop believing all of the myths and misconceptions.

Waiting for the answer.

As discussed above, if I am asking a question it is because I want to know something. If no answer comes then I am confused, upset and will worry that I have upset you. I love words because I can hear them and see them and can keep them as evidence. I can then use them in order to disect the conversation. If there is silence or sarcasm then I am left in a void of nothingness. I have to find something to fill nothingness and because I always fear the worst, I will fill it with negative thoughts and fears. If there is no answer to my question I will presume that you don’t like me and that you are rejecting me. You may well be doing this, or you may not, but I need to know. You could tell me that you don’t have time to answer right now, or that you need to think, or that you will answer later, but leaving me in silence is the darkness of not knowing and for me this a torture chamber of negative thoughts and fears and tears. If you think that this sounds melodramatic then please read my section on sensory issues and emotional meltdown.

You probably think that I am exaggerating. You will probably say that ‘we all have this.’

When I talk about the negative thoughts and fears you are possibly thinking that I am exaggerating. A very common response from lots of neurotypicals – muggles – to neurodivergent – autistic people – seems to be to say that it will all be ok and that ‘we all have that’ don’t we? This line causes a great deal of distress and dismay within the autistic community. It is the subject of much complaint and consternation. I have been thinking about this and talking to muggles to try and find out where this belief and misunderstaning comes from.

I think that muggles are trying to make things better. I really think that the words are well meant. Not helpful, but well intended.

I really struggle to understand this and I am not really the right person to try and explain. You need to ask a muggle. But it seems that they feel comfortable and in fact comforted if they think that lots of people have similar issues and that in knowing this it sort of makes them less painful and easier to bear. I know that I feel ‘better’ since learning about all of the amazing women who seem to come from the same planet as me. So, the issue is not that they feel like this, but more, that they presume to know how we feel. They are in the majority and most people they have met will have been the same so the presumption is understandable. The insult and issue is that we want them to understand that it isn’t the same for us and in many cases we are desperate to be accepted and undertsood for who we really are and what we really feel and see and hear and need and want.

But what I am trying to say is that in my experience they are not trying to be cruel. They think that they are being kind. Confronting differences or even being seen to get involved in something conrtoversial is uncomfortable for many muggles. This would be fair enough if only they could recognise the amazing ability of many autists who will happily stand up for you, your rights and for truth and justice.

It seems to me that they want a meticulous pilot and they value a surgeon with precision or an engineer who envisages the end before the start and ensures the bridge doesn’t collapse. Many autistic people and autistic skills build the foundations of society. But if you meet us in the pub then you hastily step away and are able to justify this by believing in the many myths which tell you that ‘we prefer to be alone’, that we ‘are not able to socialise’, etc etc.

Socialising.

Now that I have a diagnosis of autism I feel even more self-concious about socialising than I did before. But I love people. I love meeting new people and learning about people and am always looking for the next opportunity to help someone and to become their friend. If you think that that sounds quite childish, then you’d be right. If you make friends with me then you are rewarded with a loyal, admiring companion who waits for your kind words, believes everything you say and will accept your idiosyncracies as a valuable part of who you are. This naive and innocent approach to relationships seems to throw autisitc people into the pathway of bullies and abusers. It takes us far too long, if ever, to realise and recognise this. If more of the nice, kind and caring neurotypicals would hang around a bit longer then maybe these predators couldn’t make their way to the front.

I have never stayed anywhere later than 9.30pm and often offend dinner guests by insitsting they order an early taxi. At school I collapsed onto outdoor benches and in corridors during the lunch hour and at University I found a sofa in the back of the bar, put my coat over my head and went to sleep. I never understood what ‘was wrong with me’. I just presumed that I was always over tired. It is true that I am, but I didn’t realise that it is the stress and pressure and trauma of trying to fit in and trying to understand and to copy and learn and do the ‘right’ thing’. I have to think about what to say in advance, then disect and try to understand your words and then retreat and review everything in a retrospective panic and despair.

Imagine being the lead actor in a West End play. Day after day after day. Never being able to get off the stage. Trying to remember the words and to stay in character. Collapsing into bed each evening knowing that the same act begins again the next day. I am not asking for sympathy. Not at all. I feel sorry for myself now that I have a clearer reflection of the last 50 years but I’m not asking anyone else to. What I would love to facilitate is better understanding. I would love that some of the myths that autists and muggles have about each other could be explained, discussed and dispelled.

Autism and trauma in a lockdown.

I often describe my life as looking very privileged and pretty, but no-one sees the pain. So I know that what I am currently feeling is a first world problem. I am terrified and not coping at all with so much that is unknown. I’m sure that everyone is feeling the same and worrying about the same things. I’m aware that my life appears to be much more comfortable than many and that my worries are less. There is no immediate threat to me or my family or even to my way of life. I know this. I recognise this. I feel ashamed and guilty that I can’t cope because I know that I have far less to cope with than most of the world.

But that is exactly the problem with my autism, my complex post traumatic stress disorder and my PTSD. They don’t know the rules and have no intention of following any. They can’t see my lovely home and they aren’t comforted by my well stocked fridge. They don’t care that I have heating and clean running water and they have absolutely no respect for my bank balance.

Given that my life is normally one of social distancing and isolation you would think that I would be well placed to cope with this. It is true that my daily routine has changed very little. I drink coffee and cry. I run alone and worry. I try to control the shaking and rocking and suppress the rising sobs. I eat and drink with my family and try to be the confident and capable mum and wife that they prefer to see. On the surface nothing has changed, and playing board games and baking bread with my kids is wonderful and unexpected. I am lucky that I am not alone at this time as I know that lots of others are. But I can’t cope with the fear. I can’t bear the unknown. I am terrified of anything that traps me and am then triggered by the trauma that this produces. None of this is a choice. I can’t see this coming and try to avoid it. My body and brain act independantly of any reasonable thought or fact. It takes a micro second for the trigger switch to activate and then I am engulfed and overwhelmed by my nervous system as it spirals out of control and highjacks any stability or sense. Maybe it is my autism or maybe it is my complex trauma. Lots of my fight or flight reactions are comorbid and interwined anyway so it is hard for me to tell where one starts and the other one ends. I don’t think that it matters anyway because the result is the same. The shaking becomes uncontrollable and the tears won’t subside. I hate myself and then I hate everything. I want to like myself and to feel loved and valued but can’t believe that to be possible. I want to run away and hide ; I want to be found and understood. I want to die and to not exist like this; I am terrified of dying and of not existing.

Years of childhood and then domestic abuse have left my brain and body on continual high alert, always expecting to be hurt and rejected, sensing threat whether inside or outside and waiting for the next word or glance that will confirm my worthlessness and will hurl me back off the cliff again. Anyone who experiences CPTSD will probably know about the limited ‘window of tolerance’. Our emotional stability is funneled into such a small chanel that it takes only a tiny amount of rain for the banks to breach and overflow. Sometimes a trickle and sometimes a sunami. But we have no control over the start or the end. No flood defencies.

Now that I also have my diagnosis of autism I can look back and see that emotional and physical meltdowns have been my constant companions and that maybe I am not as irrational and volotile as I have been told.

Being locked down means being trapped, and for me, being trapped triggers trauma. Being locked down means that there is a threat at the door, and that makes me want to run away. Every day not knowing if this invisible disease is creeping closer is an excuse for my brain to remember every punch and kick and slap, every word of criticism and conflict. I hate being trapped and I can’t bare being alone even though my brain and body force me to feel trapped and alone with people or without, with hope or without.

You might think that the repetitive structure of a lockdown would be perfect for someone with an ASD. And it might be for some. As always, I can only know and feel what I do, and am only talking about myself with no reference or judgement of anyone else or their differing and personal experiences. Knowing exactly how the surface of the day will be doesn’t help me, or calm me, or give me the structure that I love. I love spontaneous structure but only if decided and determined by me. I travel and explore at every opportunity because it provides escape. I plan and research and prepare and so although the location is unknown, nothing else is. I like this. If I can keep moving then I don’t have to think about reality. If I am locked down then reality sits next to me and demands my attention. I try to ignore it but it grabs me and clings defiantly. I need to run away, to be free from it but I never am.

You may see privilege and prettiness but you probably won’t see the pain.

Toilets, underwear, getting trapped in a shop and girly stuff.

Toilets.

I am terrified of using a strange toilet and will do anything not to go near a public one. A bush is fine or squashed between the car and the open door. Other people say that they have it too, but they mean that they don’t like the mess or the lack of comfort or even maybe the smell. I worry and shake and picture what it will be like for days before and for years and years afterwards. As I approach an unknown loo, my mind will sift through every picture of everything that I have ever seen. The overflowing youth hostel in Greece in 1987 to the train station in Ayutthaya last year. I don’t want these images in my head and want to tear out my eyes so I can’t see them anymore. But they would still be in there because they are a constant feature of my nightmares too. I am frightened of what I will see or hear or smell. I am told that I talk about every visit to the toilet far too much, but once I have seen it, it is too late. The image is stored, and I will see it forever. I start to retch even before arrival in the cubicle. Well, first I cough and then I retch. It is the same with travel sickness. The coughing is the warning sign. And the exact same thing happens if someone else is sick. For years, Pete has had to mop up the car sickness because I run retching into the hills.

Getting lost inside.

This is still a toilet thing normally.  For some reason, I get lost trying to exit the ladies’ loos in hotels and restaurants and any other unknown building.  I managed to get in there but getting out looks completely different and doesn’t have the same signs to guide me.  If I remember, then I turn around on the way in and try to remember the exit.  I tell myself the directions and try to picture something that will help.  Ok, so you have to go left and then past the plastic plant and round the back of blue table.  I end up standing somewhere looking around and have a small panic about where I am.  I know that it will be ok.  I can’t be far away but for a moment I panic about how this has happened.  Why am I so stupid?  I used a hotel spa with various saunas and strange steamy things once, but I couldn’t remember which was the exit door.  I didn’t try for very long, couldn’t find it, and sat down and cried.  When I finally escaped, I was drained and shaking.  Everyone else thought that this was very funny, so I tried to pretend that I thought the same thing.  I have learned that being funny or doing weird things is why people like me, and so I indulge in this with them. 

Department stores

I have always wondered why I get really flustered and uncomfortable in these large shops. I had no idea that there was such a thing as Asperger’s for women and had never considered having sensory issues and overload. Even if I had been told about these things, I would most definitely have denied that they could affect such a sociable and successful individual as me.

Firstly, I always get lost.  Well, more disorientated than lost, since I have no clue where I am supposed to be going anyway.  I can’t find the stairs and can never exit in the same recognisable place that I entered.  I feel really hot and dizzy; my skin feels prickly and itchy.  I have always presumed that I am just a rubbish woman who doesn’t understand how to shop.  I can take my coat off but then holding it on one side feels irritating and wrong.  It’s the same sensation with hand-bags.  I can cope with a cross body strap, and in fact, love having my things pinned to my front where I can see them and easily access them.  I prefer a backpack, but then it becomes awkward and complicated to remove and swing to the front.  I then end up kneeling on the floor rummaging to find what I need.  Not at all dignified and I feel like the grandma who can’t find her purse.  But a normal type of hand- bag only sits on one side which is very uncomfortable and wrong.  I can’t run with just one water bottle on one side for the same reason.  One in each hand is fine.  Maybe I need 2 identical hand- bags?

Back in the store, I wander around looking at things from a distance.  Sometimes I touch something, and I know that the material is too scratchy.  I love a fluffy fleece really, but Pete thinks that I probably have enough of those already.  I also like soft velvet but touching that makes him shudder, so I tend to stay away from it.  I can’t stand fuss and frills, lots of straps, or dangly bits, or tassels or belts.  I gravitate towards things that are bright and patterned but force myself away to look for something more sophisticated.  But I have no idea what on earth that is or what that means.  I don’t know which me I am anymore, so I have even less idea who it is that I am trying to dress.  

Gifts – 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!

Underwear

Why must I wear extra layers of material containing hooks and clasps and fiddliness beyond comprehension?  For years and years, I refused to wear a bra, and if possible did not wear knickers either.  Trying to get into a bra is an obstacle course waiting to trip you up.  The clip has to be controlled at the front, but then needs to go to the back, and the straps need adjusting but I have to take the entire thing off to do this, and if they are not entirely equal in position, then I need to start again.  The bits of plastic that control the straps are far too painful to be placed directly on my shoulders, so the bra is probably too tight or too loose, and why must I have a piece of metal intruding into my front.  How is this helpful?  Knickers do not present the same challenge, but they are uncomfortable.  I only want to feel one layer of fat wobbling about, and knickers encase some of the skin, but let the rest creep over the top.  If tights are needed, then this is a disaster because they do exactly the same thing, so why wear them both.  And, I have always put another pair of knickers on top of the tights because I hate the sensation of slipping and moving.  Reading that back now, I do wonder if that is normal?  I have always thought that I could easily get into being a naturalist: just so much easier. 

Clumsy and clothes.

I break everything.  The delicate necklace chain, the pearl bracelet, every light fitting and smoke alarm that I have ever tried to fix, scissors, tin openers, glasses, tubes of toothpaste and anything remotely fiddly really.  And everything else breaks me.

Chopping vegetables always makes me shake and I have never understood why, but it was only when my physical symptoms became unmanageable that I started trying to find help and diagnosis.  I am incredibly frustrated if I can’t do something; I am angry at myself for not being good enough. I tell myself to concentrate and to stop being so stupid, but I can’t chop, and I can’t cut and normally spill, splash and drop everything.  I can manage to grate cheese and carrots, but only as long as everyone is fine with the skin from my knuckles being included in the dish.  I do have a food processor that could do this but I pushed the carrots in too far and too hard and so broke the bowl and covered the coleslaw in shards of plastic.

 Trying on clothes is a physical attack on all of my senses.  The heat, the confined space, the forced multi-sided views of my body and then the top, which has probably been tried on by someone else.  The label gets twisted and my arm doesn’t fit.  If there is a small thread, I pull it and the top unravels or the buttons pop off and I try to escape.  I’m not sure what I am doing when I try to buy clothes.  I feel like I am rehearsing for a new play and need to assemble some props.  What does this character need for this role?  How do they want to be seen?  Do they want to be seen at all?  I gravitate to very bright clothes which my daughter says are too childish and calls them my ‘toddler tops’.  I thought that these things were just external displays of my outgoing and extrovert personality.  If this is not really my personality, if not knowing what to say, or how to say it, or when to shut up, is not actually a sign of the super confident wacky out-there person that I thought I had created, then maybe these clothes aren’t mine either?

Hats

I love wearing hats. Woolly hats are my favourite and I am rarely seen without a brightly coloured hat from the end of September until at least the next May.  I find umbrellas far too fiddly and too lop sided for my body so prefer a hat just in case.  For the summer I have berets and caps of all shapes and sizes.  Everyone tells me that I am really brave to wear a hat.  I don’t understand this at all; I wear a hat for protection.  I feel that I am less able to be seen if I am wearing a hat despite the very obvious fact the opposite is actually true.  When I was interviewed by the American police who thought that I set fire to the house, I found a charity shop and bought a hat.  I felt braver somehow. 

Jewellery

I wonder if it is this pressure to conform that causes so many of my physical symptoms.  I can feel my hands shaking when I try to wear a pretty piece of jewellery that has been bought for me.  Often, if it is particularly delicate, I break the chain or the clasp within seconds of taking it out of the box.  And if I do manage to extricate the item from the packaging then I will immediately get the chain tangled and knotted so that it is unwearable.  Who invented something so stupid that if moved it ties itself up in knots, and also, why should I want something so sexist that I need a man to fix the ridiculously small clasp for me?  It makes me feel uncomfortable and I don’t know why.  I think that this jewellery looks like something that a sophisticated, grown up woman should be wearing.  I can see that, and I can say that to myself, but I don’t understand who that woman is, and it certainly isn’t me.  And because I don’t believe that this is intended for me, I make the natural conclusion that the gift giver does not like me and that they are trying to change me into the sort of person who would be able to cope with delicate and feminine chains of gold.  I shake when I am trying to put make-up on and even when trying to dry my hair.  I smear the lipstick across my teeth and blink so often that I need to remove the mascara and start again.  Don’t get me wrong, I really like to look nice.  In my head I want to look nice, but my body often disagrees, and I just can’t get it right.  I think that maybe my body is shouting at me for trying too hard or being too fake or maybe I am just too clumsy. 

Nail polish.  Why?

Sometimes I try to be feminine and paint my nails. Most times, because I have no patience, the colour is smeared before it has had chance to dry and I remove it again. If I do manage to create a coat, then within an hour it has started to feel like an intrusion on my body and I start to scratch it all off. I even scratched off gels, which I am told you are not supposed to be able to do. Finger- nails annoy me too. They hurt too much and so I cut them short. And as for facial hair, is it supposed to be that painful? How do men cope? I can feel a solitary black hair starting to force its way out and am inconsolable trying to scratch, pick and pull at my skin.

I thought that all of this was normal, but now I am wondering?

Over analysis, scripts and acceptance; what did I do wrong now?

Every moment of every day and most of the moments through the night, I reflect on what I have said and what I didn’t say; what everyone else said and what they didn’t say and whether or not I should or should not have done any of that. I plan in advance so I know what I am going to discuss. I presumed that was what everyone did. I write lists and print off articles which might help me provide evidence for my planned debates. I presumed that this was a positive attribute of mine and never understood why it didn’t seem to be well received or reciprocated.

I write everything down before, during and after interactions or lack of them, and then I read it out loud to myself over and over. If the opportunity arises, I tell everyone all about all of this. I need to discuss every word and every thought. I always thought that I was curious and caring and that I was just more able to analyse than other people. I presumed that they would have liked to be more like me. I thought I was adding to the discussion.

Having listened to Tony Attwood’s recent webcast, I realise that I am one of his ‘Italian drivers’ who doesn’t see the traffic lights and has no idea when or where to stop.

Fitting in – or not.

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 Asperger’s.  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. 

Acting. Which is the same as masking isn’t it?

I did seem to fit in better for a while by taking the lead roles in all of the school plays, joining theatre groups and taking elocution lessons and speech exams.  Maybe I didn’t fit in, but I didn’t feel as lonely.  To be honest, looking back, I was surrounded by mainly gay boys or very strong and stroppy girls, so they probably didn’t pay much attention to me.  Theatre and Drama were all I cared about.  Every day, and every weekend I was taking part in something that involved acting.  I wrote my own plays and have newspaper clippings of the various awards that I won.  I think that my new fame allowed everyone to excuse, or at least try to overlook, my ‘eccentricities’.  On the rare occasion that I have found someone on Facebook, they always ask if I am a famous actress.  Obviously, I have always said no, but I realise that while I may not be famous, I have clearly been very successful at it.  I didn’t just fool all of them; I fooled myself as well.

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.

Topics for conversation

Apparently, I go on and on about everything and normally end up offending someone.  They refuse to speak to me again and I sit and cry on the bathroom floor, not knowing or understanding what I have done.  I always ask people loads of questions about what they do, where they go and what they think.  I try to remember some family names so that I can ask again next time and I am always interested in any trips that they have planned.  I want to know their plans and have always been quite baffled by how little they seem to know about what they are doing.  I have always presumed that me diving in and creating an itinerary is incredibly helpful and that they will be grateful for suggestions that facilitate a much better schedule.  No-one ever told me that this is what I need, but not them.  I had no idea? 

Next, I listen out for topics that they seem to be interested in. It might be Politics or religion or health or exercise or children or whatever. I don’t do it on purpose, and had never ever considered this until now, but I then become a specialist in their field of interest and even have handy articles or books in my bag ready to prove any points that I might make. I always thought that people would be eager to learn new things about something that they were already interested in. I presumed that they would want to debate any issues and be exposed to opposing facts and views. As it has now been brought to my attention, that these are not the rules with which most people play the game: I now understand why I normally lose.

Why did no-one tell me the rules?

I have asked my husband and my daughter 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 both 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!

Writing.

Writing things down is really easy for me and is probably why I continually send letters and now emails to anyone and everyone that I feel needs an explanation about me. If you meet me and talk to me you will think that I am confident, clever and capable. For some years, I think that I believed that I was. I have been acting this thing for so long that I can’t switch it off. It is only recently, when I have started trying to be more honest, that I have realised that they simply don’t see. They hear my words, or even read my letters, but then they see me, and it doesn’t make sense. It is much easier to believe the surface chatty, exuberant and a bit crazy woman than to scratch the surface and face a much less palatable truth.

I don’t remember what I did yesterday, but yet I remember and have written down every moment of distress or discomfort for the last 20 years.  I cling to this book and feel like it is my only friend that knows what has happened and what has been said to me.  I panic if this book is not with me or if I cannot see it or know where it is. I feel really guilty and somewhat embarrassed about my book because it is just lists of what anyone has said to me that I deem to be offensive, insulting or disrespectful to me.  What if I am wrong about all of this?  What if this is normal behaviour that I am simply unable to see?  I feel terrible about this and have no idea how to establish if this is just me or if it isn’t.

Writing down my thoughts is really just me talking to someone.  It has become my only friend since everyone else stopped listening.  I need to talk and to write in order to find my thoughts. I panic if my notebook or iPad are not with me because I think that I will forget something that I need to tell myself about. Does that make sense?

Yesterday on the train, I did not have anything so had to scribble notes in my diary, but at least my diary was now listening. If only my brain could connect straight to the paper and then to the printer, it would be so much easier. I did used to talk to Pete, or maybe tell is a better word than talk, and maybe that is why he got bored and irritated and stopped wanting to listen. I have tried to share books and articles and lists, but he doesn’t read them. No-one will come when you cry, so it is better to stop crying, stop waiting and hoping. Of course, I am so stupid that the next person who looks just a tiny bit interested in me, will open the door again and I will naively believe that it will be different this time. I know that it won’t, but I always want to believe that it will because otherwise what am I doing here? What is the point of me?

I have read so much about ‘Aspies’ now and have completed countless surveys and watched every You Tube discussion with every specialist out there. Part of me wants to be excited. Everything they describe is me, me and me. I thought that I was unique in my weirdness but turns out there are other people who believe they come from the same ‘planet’. Because I am me, I have wanted to talk about this. And talk and talk. I thought that Pete might like me better again if he knew that some of the things that I do are less my fault than we thought. Every day I ask him, and ask myself, what have I done that is wrong or bad? What have I said that I shouldn’t have? Is it my fault? What did I do? Often, I find myself crumpled and crying on the bathroom floor rocking backwards and forwards and asking myself, what did I do, what did I do?

I conclude that I must be even more wrong and bad and to blame than I thought I was? I didn’t break the rules on purpose. I couldn’t have done, because I didn’t know what they were in the first place.

Autism and empathy – too much of it actually!

This needs to be in capital letters all of the way through. You need to know that I am shouting this as I type. I have tons of empathy. In fact, I have so much empathy that it ways me down and affects everything I do. I am autistic and I have even more empathy than you do – who knew?

I was just trying to be funny in a sarcastic way in my above comment. I have no idea how much empathy you have and nor would I ever intend to judge it. It’s just that the stereotype really upsets me. Of course, if you struggle with empathy then I understand that too. My husband, who is a muggle, doesn’t have any and it is destroying us. But that will be my next blog!

Ten minutes ago I was sitting on the tube in London – first world problem I know. A man of around my age was clearly suffering from anxiety and a host of mental health issues. His loud dialogue with himself sounded exactly like my inner dialogue with myself. He was angry about his decisions, he didn’t understand so much, he wanted to do things differently, he wanted to see things differently. His pitch and pace and anguish increased and intensified. I felt every breath and word and my body began shaking with a desire to intervene and help. He had a large stick with him and all I could see was the scene where Mr Hyde bludgeons a man to death. Because of this, I was too scared to go to this man. I feel terrible about that. Maybe one kind word could have made a difference to him today? I am a fan and devotee of the JB Priestly message in An Inspector Calls. Just a small act of kindness or unkindness can make a massive difference. We need to know the story behind someone. There is always a story.

It sounds arrogant to say that I feel everything. Oh well, I have been accused of worse. I really do. Because of this, I have ended up becoming a ‘caretaker’ for many disfunctional and downright destructive personalities and people. I only just realised this and my new research and revelation about personality disorders/ narcissists and autism will feature next.

I am aware that autism can impare empathy and I understand that alexithymia and similar conditions are debilitating and add extra layers to what is already a ‘disability’ of sorts. I have no idea if I am allowed to say that? I think that I am great, but I have to conclude that being me feels like a ‘disability’ when trying to function and navigate the world that I am in.

But, in this blog about me, I am talking about me, and I have loads of empathy. I actually wish I had less. I didn’t think that before. I thought that I was helping and caring and saving everyone but now I realise that I was trying to help and care and save me. I had learned to be the ‘caretaker’ early on and just carried on. All of the books that I have read recently about personality disorder make complete sense. I don’t have the personality disorder! I realised that my husband does and needed to understand. All of the books make sense, but they never take account of or allow for a relationship where the recipient or vicitm, is autistic. I think that this needs to be explored because we can be far more trusting and far more vulnerable to manipulation and abuse. But as I said, next post.

If you read the threads – is that the right word? And the forums, on ASD groups you will see more caring and compassion and concern than I have encountered in over half of a hundred years wandering around this planet. I am not seeing and hearing and feeling a lack of empathy or a capacity to care. In fact, these women have experienced trauma and hurt and rejection for years. They are confused and scared. But yet they care without judgement about the words and feelings of everyone else.

Somehow, somewhere, the myth has been created about ASD and it suited the muggles to believe it. I think that it meant they could congratulate themselves on a lucky escape and could justify their own lack of care and compassion. Ironic? Is that irony? I’m only an English teacher, why would I know?

It isn’t enough to keep preaching to the converted. Somehow I really want everyone else to know that we are here and that we see and hear and feel and care. That’s ok isn’t it?

I think that I am ok really: just wish someone else agreed.

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.

School.

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!

Nightmares

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. 

Maybe all of this isn’t me being weird? Maybe I’m just autisic?

I included this in my first blog but now think that it might be helpful as a stand alone list. I know that I was desperately trying to find something to read that included some of my weirder traits. Maybe yours are like mine? Maybe we have found our mother planet?

Would the real me please step forward.

I pretend to be spontaneous and fun; it appears that I am, but what they haven’t seen is the hours and days of lists and plans and panic.

I plan and plan and over plan everything.  I have to know what is going to happen and when.  I thought this was just me being super organised.  Everyone tells me that they can’t be expected to adhere to my schedule.  I thought that I was helping them, but maybe I have been helping me?

I think and plan and pack and re-pack at least a week before a trip.  I have to have my special things in my bag, next to me and easily accessible.  I thought that this was just good organisation and management but never thought about the panic and distress it causes me if this doesn’t happen.

I need to tell everyone every opinion I have, and I need to keep telling them until they agree.  I need them to say I am ok and right.  I always have lots of facts to back everything up and cannot understand how people don’t like hearing this and how they can dispute facts.  They can hold a different opinion, sure, but to me, facts are not disputable.

I have to stick up for injustice and unfairness.  I cannot bear bias and jealousy.  I lecture people with my research and facts if what they are saying is based on rumour or lies.  They don’t like this, and I don’t understand why.

I care too much about everything and not at all about some things.  I jump in to help when it is maybe not needed or wanted or maybe when it will not be valued or will be rejected.  I understand none of this.

I need a calm routine and don’t cope well if I can’t prepare to leave the house in the same way every day.  They laugh at me for getting up 2 hours before an early trip and I pretend that it is funny, but it is not.

I have to sit where I want to sit or else I am very distressed and cannot enjoy anything about what I am doing.  In the theatre or a restaurant or a train or a plane etc.  The wrong seat or view or access to the toilets would make me uncomfortable and the more I am then told to stop being ridiculous, the worse it gets. 

I cannot bear clothes that itch or scratch or constrict.  I would rather cut or rip them off.  Same with jewellery.

I panic if a top is stuck over my face or if a necklace will not immediately undo.  I feel trapped and attacked and can’t stand it. 

Noise annoys and upsets me.  Barking dogs, ticking clocks, loud voices or music.  Inconsiderate noise or behaviour really really upsets me, and I want to make it stop. 

I am terrified of toilets – generally.  If I see something horrible, the image will stay with me forever and keep reoccurring in my mind as an image.  This makes me wretch. 

It is difficult for me to change my running route and very difficult to start a new one in a new location.  I can’t make my body do it – feels wrong, like a punishment to myself.

I am obsessed with dieting and feel sick and guilty all day once I have eaten something.

I cannot stand to eat something that I don’t want to eat.  They all tell me off for it but, I know what I want and anything else will make me worry and panic.

I rock back and forth and tap my feet when I am trying to think or to worry or to calm down.

I have terrible IBS that gets worse with what I perceive as stress.

I am totally drained after a conversation.  I feel like I have had to concentrate really hard on trying to be ok.  I never succeed, but then I need to run away, to be alone and to cry and sleep.

I am always ALWAYS asking myself and Pete if I have done something wrong, did I say something wrong.  If I meet people I always ask if I behaved, did I do anything bad?  I am always in trouble for something.

All my life I have been told that I think too much and that no-one will ever put up with me.

I have always tried to say yes in the hope of being included; I never know when to say no. 

I get lost in buildings.  I can’t find my way back out of the loo and need to check the exit on my way in.

I got stuck in a hotel spa and cried because I couldn’t find the exit door.  

I have had over 35 jobs.  I leave because I don’t agree with their methods, principles, morality, or because I am scared that something is changing, or that they don’t like me.

I never stay in a gym class because I can’t copy or converse.

I made friends at school by being funny.  I entertained them and I thought that they liked me.

I had no idea about sex and had no idea where to put a tampon.

First meetings – always good but I have nothing else to say after that.

Most conversations I instigate are either lots of questions about them, lots of questions about stuff, or planning something. 

I am so much happier somewhere where the language is different.  I don’t feel obliged to speak to everyone and they don’t speak to me.

When I am criticised for saying something that is true, or when someone is offended by me just existing, I tell more truth.  I say the absolute truth of what I am thinking.  But it is not what I am thinking, it is a fact or a controversial opinion.  I see now, that is not at all how I am feeling.  I never realised that before.

I like to do lots.  I like to go to lots of places and not to get bored in one place.  But, I have to plan it and keep my routines and things around me.  I get very stressed in a new place and feel really uncomfortable and unable to relax.  I thought that I liked the continually moving and changing but maybe I don’t because I am always upset.  If it is not what I expected, then I am very unhappy and want to leave.

If there is no fresh air or the windows won’t open, then I don’t want to stay and find it very difficult to stay calm.  It makes it worse when everyone says that I am moaning again and that nothing is ever good enough for me.  If it is good enough then it is, if it isn’t good enough, then it isn’t. 

I cannot rush.  I need each action or movement to be planned and to work.  I would rather wait an hour for the next train than try to run.  It means that I didn’t plan well enough and shouldn’t be doing it.  I don’t want to be forced to pretend that I am ok with this. 

I don’t like it if the plan is changed. 

When I say that I don’t understand, it is because I want an explanation so that I can understand.

If you ignore me or I hear silence, I will fill it with doubts, worry and fear.  I will complete the story and can only base it upon what I have known before. 

If I see a date, I remember whose birthday it is.

I think about a word or a topic and then, there it is.  In the paper or magazine or billboard – just weird.

Department stores – too big, too hot, too confusing.

I can’t walk in heels and can’t walk on uneven surfaces at all.

I can smell blood.  I could smell when my period was due.

If I am wrong and bad, my body doesn’t work, and I want to tear my skin off.

I have to ‘nest’ and make everywhere a home or I will not feel comfortable.  This sounds funny, but it isn’t.

I have to work out everything backwards.  What needs to happen at the end?  I think this is a positive.

I read and read to learn.  Everyone said I was a know it all when I had kids, but actually I knew nothing – hence the books.  I really didn’t understand what I had done wrong.

I need to get my point across and won’t stop until someone makes me feel listened to and valued.  They don’t.  They just reject me more.  But I don’t stop.  I don’t think I really understand any of this.

I have to make sure that everything is organised and can’t understand when I am told to just let things ‘go with the flow’.  To me that is awful.  So much could go wrong and how will I know what to do?

I presume that everyone would like to hear my new thought or opinion.  It appears that they don’t, and I am baffled by this.  I want to hear theirs and it is not my fault that they don’t have one!

At school they bullied me for being clever and wanting to learn so I told everyone that they would fail and go nowhere because they refused to learn.  They didn’t like me, and I really didn’t understand.

I was upset at school by bad behaviour or disrespect.  I told the others this and told the teacher if they were doing something wrong.

I was always trying to play with them, join the group.

I was never picked in PE. 

I didn’t understand clothes, make-up or gossip.  I never ever understood being two-faced.  Thought honesty was better.

People always lie about me.  They make up something so that others think I am bad.  This has happened to me lots.  I have no idea why. 

I have written letters to anyone who I think that I might have upset, and I have written letters to everyone who has upset me, but I have never sent those.  I have them so that I can read them to myself and think about if I did anything wrong and why they were unkind to me. 

I preferred to talk to the bus driver than the other kids. 

I told everyone not to smoke and they hated me.  I knew that I was right.

I cannot stand to see wires or plugs.  I have to hide and tidy them.  I do not like a hotel/ apartment if this happens.

I only like to drink out of certain mugs.  I prefer shapes and don’t like normal ones but can manage if they are patterned.

I never drink out of the can.

I don’t want to watch a film if I don’t know the ending.  I am very upset when made to do this. 

I cannot stand any kind of violence in anything.

If someone’s partner dies or disappears then I never watch again.  Kate in Heartbeat, Rose in Dr Who, Josh and Donna in The West Wing and Matthew and Mary in Downton Abbey.

I talk too much, too soon.  I launch into conversation and ask lots of questions.  I thought that I was being nice.  I had no idea there were rules about this stuff. 

My daughter says that I am completely different when I talk to someone else.  She says that my voice changes and I am over eager and ask lots of questions with exaggerated interest.  Also I never know when to stop.

I talk to everyone, everywhere.  I always ask them about them.  I never know when to stop.  I think that I have to speak to them, that it would be rude not to.

I write lists of what I want to say.  I research everything and print off lots of evidence/ back up. It is always in my bag in case I have to talk to anyone. 

I have already written a list for a trip in September so I can make sure I have time to get up, go to the loo, run and have time to calm down again.  No-one knows this and they will think I am fun and spontaneous when we go.

I can’t cut anything with scissors or with a knife.  I slip and often slice my fingers without noticing.

I like all of the doors in the house to be open so that the room is seen, but without any clutter as you look in.  I need the rug to be equidistant from the fire and the sofa and am upset when it is moved.  I like the coffee table to stay where I have placed it and do not like furniture touching each other. There must be a gap. 

I need to know exactly what we are doing, seeing, visiting and then to plan backwards.  I need to know where we are eating and plan the time we should leave to get there.  Any prospect of being late makes me very nervous and unhappy. 

I can skim read information and find the main points – I thought that everyone could.

I see a problem and can immediately think of ways to solve it – I presumed everyone could or should.

 I tell the truth, seek out the truth and respect hearing the truth – I have learned that not everyone thinks like this.

I am not offended by opposite points of view but am upset when mine are used against me or to dislike and reject me.

I try to chat and appear interested, but it is incredibly draining, and I can only cope for short amounts of time after which I need to sit and be quiet and probably shake and cry.  Some of this is my CPTSD but maybe some is actually Asberger’s – who knows? 

I hate my body and my brain.  I wish I wasn’t me and often wish that I didn’t exist. 

I break everything.  Light bulb fittings, every smoke alarm and anything that is too fiddly.

I can’t use scissors or tin openers and lose patience with these items very quickly.

I look after everyone and try to make sure they are all listened to and cared for and that everything is organised for them.  I do all of this far too much.  When I ask for help, I am shocked to find that I am rejected.

Looking back, I realise that most people who I thought were my friends were just using me as they passed by.  Some were users and I facilitated lots for them. Some were abusers and some were narcissists.  I made myself available to help or entertainment.  They ditched me or moved on.  I’m not really sure now.  Nothing seems to be the way I had imagined that it was. 

I don’t actually think that I have ever had a real friend who liked me unconditionally and accepted who I am.  When I have asked for understanding or help, they have all faded away. 

I tell everyone everything and put thoughts and feelings on Facebook.  My daughter told me this was not ok and that I should stop, so I have.

I thought that I was super sociable and would have filled in an AS quotient to say that, until I thought about it, and realised that I was trying to be sociable but failing miserably.

I like wearing hats; they feel like protection.

Every day I add something new.

I thought that everyone understood; I thought that we were all the same.

Can I take this mask off now please? It hurts.

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.

What you see and hear probably isn’t.

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.

Bubbles.

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.

Silence.

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!