But you don’t look like you are Autistic

I am nearly speechless every time I hear this.  Only nearly speechless.  I am never speechless.  The thoughts are constant and if they are not spilling out onto the paper, then you can be sure they will be dashing into your airspace.  Well, where else are they going to go?

So, what exactly, in your opinion, does an Autistic person look like?  What on earth does this mean and why are you saying it?  Do you know anyone Autistic?  In fact, to make this statement, I can only presume that you know hundreds of people with AS difference and that they all look the same.  No?  Well what then?  What are you picturing?  Let me guess.  If I don’t look like Rainman or Forest Gump, then I can’t be a person with Autism?

Do all neurotypicals look the same?  You all sound the same and behave in the same confusing way, but you don’t look the same.  I can’t tell that you are an NT until you speak.  As soon as you say, but you don’t look Autistic, then I know, your ignorance and prejudice shines through.  But your general appearance? 

My daughter has studied the mummys arriving to collect their bundles from University.  She says that there is a kind of uniform.  They arrive in a nice car and step out wearing white jeans and some sort of Phase Eight type floaty floral top.  They carry a stylish bag and have sunglasses holding back their hair.  I arrive in my very trendy red Range Rover and I too am wearing white jeans with a pretty top.  You would never know.  If you spotted the floral backpack thrown on the floor in the car, then you might start to wonder.  And if you noticed that I can only wear the sunglasses for short periods of time because they hurt my head too much, then you might raise an eyebrow.  And if you see me later, you will notice that I have spilled coffee on my white jeans and probably smeared chocolate accidentally because I held it too long whilst thinking about something and it melted in my hands.  But only the trained eye would see past the initial appearance.  And in my experience, the NTs make their mind up very quickly and believe exactly what they think they see.  So you would see another yummy mummy with leisure time to spare enabling her to collect her offspring for the Christmas holidays.

I am going to ask as many people as I can, what they think a person with Autism looks like.  It might be fun to find out. 

Sometimes I wear lots of colours that clash, with a non- coordinating scarf and hair ribbons. If possible, then also a hat and some multi coloured pumps. I only do this when my daughter isn’t looking – I’m not that mad – she is a scary, judgemental NT who wants me to appear at least a little bit normal on the outside. And if you saw me then? Well, you would question my sense of style or colour choice. You might think that I am just a rebel defying the latest trends. I haven’t a clue what they are, so that would never be true. But, you wouldn’t be able to see inside my brain and recognise neurological differences at first glance would you? And if you can’t see that I am Autistic, then you can’t see that I’m not. If you see what I mean?

The diagnostic criteria. We need to change the words!

I have decided to take offence. Everyone else seems to be taking offence at anything and everything, and so I have decided to join in.  So maybe I do not have difficulty interacting with my peers after all?

All of the words are subjective and pejorative.  They all imply deficits and criticisms.  ‘Impairment, inappropriate, narrow, exclusion, indifference, compulsive, superficial, odd, limited, peculiar’ and so on.  Who decided this?  By whose rules is this written? And, how on earth is this meant to help me feel better?

So, I have to lie and pretend do I?

My husband asked if I was worried about my diagnosis interview today.  I said that I was because, well, that’s just a continual state of being.  I am up and alive, so yes, I am worrying.  I also explained that I worry about lying and pretending.  I am so used to doing this in order to survive that it just happens.  I worry about accidentally telling the truth because I haven’t used my ‘intuition’ to figure out that I have to lie, so waffle and appear to be completely different from who I really am and never demonstrate how I am really feeling. He said that of course I should tell the truth.

I told my husband that I was going to take offence at the criteria when taking part in my ASD assessment later today.  I told him that I was going to ask the psychologist if she is Autistic or not, and if not, then how is she able to understand me?  He told me that this was a bad idea.  He said that if I wanted something from her, then I shouldn’t say anything critical.  So, I do have to lie and pretend then? 

How could I have known that I was what is commonly known as an ‘Aspie’? 

If you’d asked me if I had difficulties interacting with my peers, then I would have said no.  I would have said that I had lots of friends and was popular.  It wouldn’t have occurred to me that what I had were not friends at all and that I wasn’t popular.  I was tolerated and regarded as an oddity.  If I made them laugh, or looked after their needs, or stuck up for them, or did their homework, or introduced them to others, then they grouped around me.  How could I have known?  And would it have helped if I had realised?  Might it not have made my life even more confusing and lonely?

Social interaction.

I had no idea that there were rules of social interaction and engagement and contact and speech and on and on the list goes.  I had no idea and I still have no idea.  I mean, I am reading and listening and being told that these secret, invisible rules exist that they all know.  But I don’t understand, and if I don’t understand something then I can’t accept it.  I was told to leave the O level Science class because I refused to accept concepts – like the existence of oxygen – unless they demonstrated it to me.  Since they wouldn’t or couldn’t, I refused to accept a notion just because they said so.  I was thrown out and never completed any Science lessons again. 

Social cues?  What on earth are you talking about?

I took part in drama and theatre groups for years.  I was very good and successful.  Sometimes the script was provided and sometimes I wrote it.  Once the script was learned, then the cues would become obvious.  But, without the script how on earth would I have known when it was my cue?  Impossible.  To then be chastised or criticised or condemned for not adhering to an invisible non- existent prompt would be crazy surely? Apparently not.  Apparently, the NT’s are born with the script already written and all of their cues nicely highlighted so they won’t miss them.  Is this true?  Is this a thing? I always presumed that I knew the more fun, more honest and more moral way to be and that others aspired to it, but just weren’t brave enough.  I also presumed therefore, that they were grateful for someone who was brave enough.  Foiled again Hong Kong Phooey!  

Interpreting social cues.

In the autism diagnosis criteria, it says that there will be difficulties interpreting social cues.  Who wrote this?  An NT?  What social cues?  How could I have ‘difficulty’ understanding something that I didn’t know existed?  This implies that I might have known, but then spent longer than I should trying to react appropriately.  This suggests that I wanted to understand these cues, but that it was a struggle.  This is not the case at all.  I had absolutely no idea they existed and was certainly not trying to understand or interpret them.  I still have no idea what they are, and I still don’t understand why I have to.  I mean, I do understand that apparently it would help me ‘fit in’ or be regarded as more acceptable if I tried to understand them.  I understand that you are telling me that, but that is it.  Can you understand the difference?

Is my behaviour ‘socially and emotionally inappropriate’?

 If this means that I am jumping around, playing games, asking lots of questions, wanting lots of answers, wearing bright colours and insisting on a floral back-pack instead of a handbag, then is the answer yes?  If you mean asking lots of questions with a genuine interest in the other person, their feelings and their life, then maybe?  Is this inappropriate?  I have read that something called ‘over sharing’ is against your rules.  How would I possibly know these rules and how could I adhere to something so subjective?  How much is sharing and how much is over?  Is this another of those inbuilt innate rule books that NTs are born with?  But I was built with mine.  Mine says that it is great fun to talk and to learn and to ask and to tell. 

Apparently telling the truth is socially inappropriate.  And, apparently trying to help is also socially inappropriate.  So when someone says they are struggling with x,y or z, I am not supposed to discuss the issue, why it probably exists, and then offer strategies that would address or even solve it.  I am supposed to say ‘oh dear, that’s a shame’.  Am I?

Apparently, getting very excited about a topic – especially if it is geography or sociology or philosophy or politics – is not socially appropriate.  Why bring something up if no response, or a very muted one is required? That seems very ridiculous and inappropriate to me.  I don’t want to waste my comparatively short life on wishy washy nonsense.  Am I supposed to wear grey, sit still and keep quiet waiting to die?  Will that way make me immortal?  To use my favourite line from Bridge of Spies, I say – will it help?  And just another line that really epitomises how I feel.  Mrs Bennett in Pride and Prejudice says – I do not see that.  Why should I see that?  Exactly my feelings.  Maybe she was Autistic.  She did spend a lot of time in bed worrying and crying after all.

Tales from the toilet.  In fact, tales from everywhere but quite often, from the toilet. 

What is this life if full of care, we have no time to stand and stare?  Line I remember from a poem I used to illustrate some photography I did as part of my degree.  The poem is about the beauty and the wonder of the world bemoans the fact that most people miss it.  I don’t want to miss a thing.  I want to see and feel and hear and then I want to discuss it.  Something always goes wrong in public toilets.  I don’t like them so get very flustered.  I trip, get locked in, can’t find the way out, can never work these new fangled sensor taps and sometimes miss the seat because I refuse to sit on it and will never look.  I presume that this fun adventure can be relayed to others and that it will amuse and entertain them.  Socially and emotionally inappropriate I presume?

Narrow interest? Exclusion of other activities?

Well obviously. How else does a job get done? If I start something, then I would like to finish it.  I would like to address the issue seriously and complete it to the best of my ability – especially if it helps someone else.  Why is this narrow?  Once one area I deem to be my current special task is completed, then I will move on to the next.  When building a bridge, or conducting open heart surgery, or flying the plane or raising a child or even just cooking dinner, is it not advisable and preferable to focus entirely on the task in hand.  And surely it is better to start at the end and work backwards.  Surely you need to know where it will all end before you start?  The alternative seems to a very chaotic and unconstructive way to approach anything. 

More rote than meaning?

I have no idea what you mean so am presuming this proves the point?  Whatever that might be.

Compulsive need for introducing routines and interests.

Sorry, please forgive me, but again I have to shriek – what??  Isn’t that life?  Isn’t that what everyone does to survive?  What am I missing this time? I object to the use of the word compulsive here because it suggests/ implies that it is a bad thing.  Get me and my reading the underlying meaning!  I am spontaneous but only as long as I am planning it and I can include my own routines and interests.  Without some sort of planning/ routine and without some sort of interest that ignites thought and passion and pleasure, surely I would end up on the sofa with my daughter watching Love Island – or Dance Moms – or, for goodness sake – Say Yes to the Dress.  I am desperate not to live like this so plan what to do and when and make sure it is something I care about.  She compulsively watches the aforementioned programmes, but no one seems to have a problem with that. 

Does the above affect every aspect of my everyday life?

 Well, I planned it all and I wanted to do it all so of course it does.  Does it affect others?  Does that mean in a bad way?  Does that imply that it shouldn’t? It affects my husband that he gets everything planned and sorted and executed.  He doesn’t have to prepare or research or even think.  All is done, the route planned, the lunch packed, and the evening dinner arrangements taken care of.  He knows that I have to get up at least an hour before leaving the house.  I need to sit and think.  I need to drink coffee and to use the bathroom.  Is this every day?  Yes.  Does it affect others?  Well only if they feel obliged to get up at the same time.  Obviously, I will stumble over something on my way out of bed, then drop something, then need the light on briefly to find something, and then will decide to empty the dishwasher or mow the lawn at 4am.  Last one was a joke! 

Is my speech and language peculiar?

Well, it is very good.  Is that what peculiar means?  I don’t mind that others can’t express themselves and often can’t even conjugate their verbs properly.  I notice and wonder, but I don’t mind.  So why should they mind that I can express anything and everything extensively and elaborately?  And I only try to use verbs appropriately because those are the rules.  As I used to tell my students – if 2 + 2 still equals 4, then using ‘we was’ will never be a thing. 

Do I misinterpret implied meanings?

For goodness sake!  Why are they implied?  Just say what you mean people.

Delayed speech development?

How very dare you.  I knew every car on the road by age two and wrote play scripts for any and every unsuspecting guest or indeed stranger, to perform. 

Peculiar voice characteristics?

It’s acting darling!  What do you expect?

Limited use of gestures.

I presume this actually means limited use of the ‘right’ gestures.  Limited use of the ‘acceptable’ gestures?  I certainly do not have a limited use of anything.  I jump and dance and clap and whoop.  Not at all limited then!

Clumsy? 

Well,at school they gave me a tennis racket and a football and sent me outside alone when everyone else learned squash.  I can’t get across stepping -stones unless I have a branch to hold or someone offers me merely a little finger to grasp.  When I say I can’t, I really mean it. I cannot lift my leg in the air to move forward.  I am totally paralysed.  I did try skiing – but had to throw myself to the floor immediately after putting the boot thing on.  I was no longer connected to the ground – what on earth is that about?  When propped back up I was then attached to pieces of wood over which I had no control, and then I was expected to slide around gracefully.  I became hysterical and was removed from the lesson.  I sat in the car for 2 hours, sobbing and unable to move.

I take a tea towel out and about in case of impromptu eating or drinking.  I will inevitably miss the cloth and spill something on my clothes.  I try to look pretty for dinner out and am reduced to tears each time I spoil it by spilling and staining something.  I try to wear girly shoes and we end up buying plasters and pumps in the first hour. 

I can’t open bottle tops with my hands or fingers.  I have to use my teeth.  And I absolutely can’t open the silly slippy bags for vegetables without licking my fingers.  The corona virus thing has made this particularly hazardous as I have to secretly move my mask, do the licking and try to open the bag.  In the end I give up and just buy one pepper or one lemon.  It’s easier. 

Why is being me never ok?

If you have read any of my previous posts then you will know that when I ask a question it is simply that. I ask a question because I don’t understand something and I would like help, support and advice. I don’t ask questions because I am looking for sympathy or because I am attention seeking. ( I’d love to have some positive attention,but it is not what I am seeking with this question.)

I don’t ask a question because I already know the answer and am trying to be sarcastic – that seems to be the speciality and the presumption of the muggle world – not mine. And, I can’t say this enough, it is not ever never rhetorical. What would be the point of that?

My uncontrollable honesty would tell you if I already knew the answer, and it certainly wouldn’t ask you a question as a game or trick. The other advantage of this honesty is my naive desire to learn and to be better. If I have asked you a question, it is because I want to know and learn and be the best I can be for you and for me. This means that I expect honesty in return and will never be offended by it unless it is intentionally cruel or untrue.

I have probably just answered my own question. Until my recent diagnosis and subsequent research I had no idea that everyone else didn’t adhere to my honesty in their way of living. I guess this is part of the problem, but I still don’t understand why it should be.

If I meet you at the bus stop or on a train, I will probably comment on something funny or interesting or even weird that is happening around us. I have thoughts and questions wizzing and whirling and will be hoping that you enjoy hearing them and will want to join in with your own thoughts and questions. Until diagnosis it never occured to me that you wouldn’t want to. I am never selfish. I will ask you lots of questions about you. And, I genuinely want to hear and understand your answers. I love learning about people, their lives, their opinions and their problems. I will listen without prejudice or judgement. I will empathise and sympathise and offer what I presume will be welcome suggestions and problem solving advice.

Until diagnosis and my subsequent reading and learning, it never occured to me that you wouldn’t want this and that apparently it is often totally unwelcome, unexpected and is one of the reasons that I will be rejected. Even worse than this is the fact that my research into my autism diagnosis has suggested that the ‘normal’ NTs will run away but that the more abusive variety may smell a perfect victim and stick around. What a crazy, contorted, totally ridiculous way to live. Someone is genuinely nice and kind and caring and interested in you and they are the weirdo? How did this happen? Why is this even a thing?

I realise now that I have encountered many users, abusers and narcissists. With disappointment and regret I can now understand so many of the friends that turned out not to be, and the family members that were there for the taking but left like everyone else when I wanted a little bit of giving to come back to me. I am going to write my next blog about autism and abuse. It is too scary and serious to be part of this.

I know that this will sound arrogant but I can’t really understand what is actually wrong or bad about me. For over 50 years I thought that I was confident and capable and that my friendly, interested, exhuberance would be welcomed and wanted. I blamed myself every time it wasn’t and tried to be a better person who might finally be worthy of a friend who would see me for who I am and would like me and stand by me no matter who I am or what I do or say.

Now that I have read about all of the rules and games that muggles seem to play and live by I am trying so hard to predict what they will hear and see and feel. If I am me then it doesn’t work, and if I try really hard to not be me, to follow their rules and play their games, then I am left even more exhausted, lonely and confused. I have written lots about the need for translation across the communities and I really think and believe and hope that if I could do this, it might just help. Maybe it is too late for me. I can’t go back 50 years and start again. But if writing and talking about this helps just one little girl to live her next 50 years without the pain and rejection, and without the confusion and chaos, then this will be worth it. The problem seems to be that lots of us in the autistic community want to care and learn and help but the muggles don’t understand or appreciate this way of being.

I sense that my writing is disjointed but I am hopeful that the pattern of my brain is something you might understand and so I’m going to resist the temptation to correct and contain it. This is probably a metaphor for me. If I corrected and contained more, maybe being me would be ok.

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.

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?

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.