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.

22 thoughts on “Women with Autism – misdiagnosed and mis-understood.

  1. My stars. We are so similar. I had no idea what was wrong with me for 53 years, then sudden diagnosis of ASD. These are the new things I did this year. I got some essential oils. The first one, Cypress, was recommended for depression. I put some on, and in a bit, I got the deep feeling that I am too hard on myself, AND I am too hard on myself for being too hard on myself. Big helpful insight. The second one “Joy”, by Young Living: I put it on, and I am not more joyful…but everybody around me is! Even strangers at the store are more joyful! So maybe essential oils experiments would please you.

    Liked by 2 people

  2. Yes, I can relate to a lot of what you wrote. I found out at 54 years old and it changed my life, but I still don’t have a good friend. It is lonely wish I had a support group near. Thanks for being honest.

    Liked by 2 people

    1. I have been thinking that the idea of support groups is really brilliant and that we should have more, no matter where in the world we are. What do you think Eliza? Where are you?

      Like

    1. Hey Helen. I’m sorry that I didn’t realise I could reply. To be honest, I write and then run away in case someone tells me I’m wrong or bad. How are you coping now?

      Like

  3. Thanks for this, I am 19 and was diagnosed just before I turned 18. That is considered a late diagnosis, but I think compared to many women it is surprisingly early. I am grateful to have this understanding this early on. As my psychologist says; “receiving a diagnosis is kind of like receiving a road map to life, we know exactly what out strengths and weaknesses are and can get straight to work at learning to manage these.” Yes, that is all easier said than done in a society that doesn’t understand us, but in many senses it is true. A simple diagnosis holds so much power! I think the best thing anyone can do is share their personal experience, as this sheds light on how diverse autism is. Again, thanks for taking the time to share your experience. I am currently in the process of writing a post about my journey since diagnosis too. 🙂 Take care!

    Liked by 1 person

    1. How lovely to hear from you Faith. I hope that you are ok and starting to understand your diagnosis. I feel really strongly that somehow we all need to get together and speak out so that more can be understood across all communities. Chat anytime. xx

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  4. Thank you for this, I can relate to much of it, it sounds a lot like my own thought processes. I am a middle-aged woman contemplating getting an autism diagnosis. It would actually be a big relief to get an ASD diagnosis and it would explain a lot of things that have bothered me my whole life.
    I make a lot of lists and plans. I thought I was just being logical and organized. But it more than that, I need my plans, and I can’t do anything without planning. I have contingency plans for everything, and especially for social interactions.
    I have certain phrases that I can use that buy me time when talking to people, so I can work out what I am supposed to say. Usually, I just ask them lots of questions about themselves and this gets me by. I hide behind my sunglasses a lot. I smile a lot.
    I feel anxious most days. I am at my most comfortable when I am alone. I have social anxiety, generalized anxiety and have suffered from panic attacks and depression.
    I can’t hold onto jobs – I can get all the work done, but I never fit in and don’t relate to the other people in my work-place. I find many people superficial and they bore me.
    Thanks for writing. Please give yourself a break and don’t be too hard on yourself. You deserve to be happy.

    Liked by 1 person

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