Autism ADHD and so much more.

I know that those are very controversial questions and use lots of nouns and verbs that are deemed unacceptable. I know that it is not a disease and that it would be preferable if it wasn’t spoken about in this way. But the truth is, that often it is, and often by people who are at the very start of their life changing discovery. Often spoken softly by people who feel isolated and confused and who don’t understand why they can’t seem to fit in or can’t quite be like they see other people being. So, they probably do feel that something is wrong or bad. I know that I did. For over half of a century, I wrote diaries asking myself what I had done wrong and why I felt so unacceptable.

This could all just be because I am me, it could be because I have an autistic brain, because I have complex post-traumatic stress disorder, because I am dyspraxic, or it could just be normal. I don’t really have a reference point other than always feeling like I didn’t fit in and didn’t understand what I was doing that seemed to be so wrong and bad.

Now I know that what I was doing wrong was trying to be neurotypical. I had the wrong guidebook which led me into dark and dangerous neighbourhoods. Now I know that I am autistic and that I see the world differently. I experience the world differently. In amazing and intense ways that I am working hard to be proud of. Proud to fit out and no longer ashamed of not fitting in.

I wrote this list prior to diagnosis when I was wondering who I really was and what makes me me. Now when I read it back to myself – out loud of course – I realise that I have made myself sound wrong and bad. I am describing negatives. Fifty years of criticism and complaint has filtered its way into my own narrative. Well not anymore. And if talking about me helps just one person to recognise themselves, then this will be worth everything to me. I want to go back and tell the blue-eyed little girl who was trying so hard to please everyone and who desperately wanted to be included, that she didn’t do anything wrong or bad. She lived in a society that didn’t understand neurodiversity and certainly didn’t know anything about women and autism. Me included. When it was first suggested to me, I was horrified. I wasn’t like that. But that’s exactly why we need to talk about autism. To challenge and change all of the myths, the misconceptions and the misunderstanding that I believed and that left me on the side-lines looking in for far too long.

So here is my list. It is only about me and not meant to determine anyone else.

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. Special things you ask? Well, you know, a large reference book of some sort of facts far too heavy and unwieldy for the bag, a guide to where I am going, preferably written by Dickens or Bradshaw type of thing. Lemsips just in case, spare socks just in case, spare hat, well who knows? Camera and charger. Yes, my daughter I know that I could just use my phone!

I love facts. To me they are indisputable. I seem to live in a time now where that is not always the case.

At 4am every day I start the lists. What happened yesterday. What did I say, what did I do, what was wrong, what was bad, what will I do today and at what time? Start at the end and work backwards.

I really like having friends and want to meet them but then I panic and shake and don’t want to leave the house so make an excuse not to see them. Even though I wanted to.

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 often 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 appear to have planned for the worst case scenario and you will say that I am being negative or pessimistic. It’s not like that. My brain is like Griff the Archanan. I haven’t planned for one event ;I have planned for every eventuality. It’s very positive actually. Stressful but positive because it means I will cope better having foreseen the problems. And I will be the only one prepared. But if I point that out everyone will tell me that I just love to be right. Even though I actually was.

I start the day on Everest Base camp. You are camping in Brighton with the car parked beside you and a cosy pub round the corner. So, I have to prepare for the worse because my worse is more perilous. My day is more unknown. If I spill my only hot drink, I will cry but not because I am obsessed with hot drinks. I wish people understood this. The small things that seem to be me making a fuss about nothing are on top of more big things than you can imagine.

I have to think and study and research and learn. I don’t have this intuition thing. I think my way is better. More responsible and reliable. But you will tell me that I think I know it all. That would be why I read the book. I read the book because I knew nothing -duh!

I appear to understand people so I can’t be autistic. I have been studying these people for over fifty years. Day and night. Of course, I know lots.

I offer advice or help or suggestions or support because there is a problem and it seemed to be needed. It wasn’t. It will be perceived as criticism that is disrespectful and inappropriate. I will be rejected and /or sacked. I never understood this.

I ask a question because I want an answer. I thought that was obvious. It is not a criticism or a trick or rhetorical. I am asking for help and information. It’s a compliment actually.

I will be on time because we agreed a time. I thought that was what time and agreements are for. I expect you to do the same. If my husband is late and doesn’t tell me, I either call emergency services or plan to remarry. What else would I do?

Leave the house without a woolly hat you say? Why would anyone do that?

Too many colours? Too many flavours? Is that a thing?

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 two 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. I can’t bear to see the prep station and would feel sick if forced to look at the bins. In the theatre I need to be the aisle and near the toilets. On a plane only the aisle, and I become overwhelmed with panic and anxiety if forced into the window with strangers. Fine if it is my family.  In a hotel or apartment, if the windows don’t open, I want to run away. If the room is dusty or dirty, then I do run away – after crying. The more I am then told to stop being ridiculous, the worse it gets. 

I narrate my life and my feelings and describe everything that I can see and hear and then ask questions about it. I need to do it more if I am anxious or uncomfortable. It helps me to calm and cope but seems to make everyone else annoyed and accuse me of spoiling things or being ungrateful.

I am like Sherlock Holmes but without the crime solving ability. I walk into a room, and I see the dust, the chipped paint, the wonky picture, the visible wires, the dirty sheets, the unsymmetrical curtains, the stained surfaces, the badly painted coving and unclean skirting boards. I would be a great hotel inspector for speedy assessment. Except please don’t make me stay there. I can’t be in the room. It makes me feel sick and I start to narrate and discuss. If the window doesn’t open, then I hyperventilate and panic and ultimately meltdown. But until now, until I knew all of this, I would find something to criticise, to cause issues that would result in me being rejected and allowing me to run away or being told to leave.

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. I will rip it off even if in a changing room.

I can’t undo bottles of water. I have to use my teeth and usually then splash it over the person next to me.

I can’t make keys work in doors and I probably have already lost them before this opportunity arises.

I love clear sight lines and sparkly grout. I absolutely adore pressure washing even if it’s cold and I get covered in mud. I tend to take the plaster off the house and the paint from the windows, but the patio is moss free people.

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. 

I cannot stand to eat something that I don’t want to eat. I would rather have nothing and still enjoy the company but they seem to presume you are not having a nice time. I am, as long as I don’t have to pretend to like something that I don’t. 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 feel my eyes drooping and a terrible tiredness when trying to chat. I wonder if my body is telling me that I am not safe. I wonder now if my brain is telling me to stop pretending.

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’ve been told that I think too much and that no-one will ever put up with me.

I want to go back to every lost relationship and explain. I want to make it better and it spins continually in my head day after day.

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. I had no idea what constituted abuse and until now didn’t know I had a right to boundaries.

First meetings – always good but I have nothing else to say after that. Although, I often forget and be the me that they are supposed to know after few months not on day 1. That is a compliment because I am only more me if I feel comfortable and think they might like me. I always misjudge this. No intuition and didn’t write my risk assessment in advance!

Most conversations I instigate are either lots of questions about them, lots of questions about stuff, or planning something. Or lovely facts. Or trains. Or mountains. Or woolly hats!

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 and so they don’t judge me or criticise me or reject me or think I am being too – something.

If there is no fresh air, 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’m ok with this. 

I don’t like it if the plan is changed. Well unless consulted in advance or unless I changed it.

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. 

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

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

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

If I feel that 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. 

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

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 have just watched the last episode of Designated Survivor on Netflix but don’t tell my husband.

I talk too much, too soon, or so I have been told. Too loud, too much, too something it seems.  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. It is easier to copy what people seem to do but impossible to know what not to do.

I talk to everyone, everywhere. I always ask them about them. I never know when to stop and often don’t want to. I think that I have to speak to them, that it would be rude not to. I love learning about people and their culture and views and language and all of it. I have been an anthropologist on earth for over 50 years.

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 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 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 like wearing hats; they feel like protection.

I am excited by nature and mountains and sky and light. I value time and space and beauty and knowledge.

I like difference and respect opinions but not lies or bias.

I can’t balance and often fall over nothing. I need my feet to be on the floor. I need crampons and walking poles on the smallest bit of ice or snow and can’t get across steppingstones without a twig or little finger to hold. Really, I can’t make my leg move. The kids wait on the other side and laugh.

I open packets and boxes by ripping everything and destroy important mail because I did not respect the dotted line.

I will try and not show you me, but sometimes I’m too tired to get on stage. Sometimes I forget to perform or just don’t have the strength to get the costume over my head.