Autism ADHD and so much more.

It is the trip of a lifetime.

(I am never sure if I am travelling, if I am hiding, surviving, or just running away. Is there actually a difference I wonder?)

People say that they will only publish if you are able to change perceptions about people and places.

If you try to publish, they tell you that you have to be different. Which, ironically, is the exact thing that I have spent over 50 years trying not to be. Who knew?

Well, come and join me on my adventurous neurodiverse life, and I can promise you that your brief will be met. Buckle up!

The word journey seems to be used to describe life. It seems to be used to emphasise stress and struggle and the striving that it takes to overcome. Or at least that it how talent show contestants use it in order to tell their ‘story’ so we understand them better and emphasise with the reason why it is so important that they are chosen. The two seem to be linked. If the ‘journey’ has been difficult and painful, then the story needs to be heard, it seems.

Well, if this is true, if this is the new way that we live, then perhaps my stories might be worth of being told. If life is now described as my journey, well then it has been and still is very difficult, painful, and full of uncertainty. The perfect travelogue you might say.

If journeying is what I have been doing, then surely another word to describe this trip of a lifetime is travel. Not travel in the traditional sense which involves a short trip somewhere in the world planned and packed for in advance, but travel meaning the navigation of a life: a life lived.

When you feel and see and feel and hear the world differently it follows that every experience is more intense. This can be debilitating and painful, but it can be an amazing opportunity to view a world with awe and wonder. When every moment is uncertain and unclear and filled with the fears that the unknown brings, then simply living becomes a epic travel journey; simply trying to be and to exist becomes the journey of a lifetime.

Travel for some of us might be the planning and energy that it takes to get out of bed and get dressed. Travel on another day might be a trip to Timbuktu. But when the world and its people and its rules and its expectations are unknown and often inaccessible, then whether a supermarket or the Serengeti, we have a journey to undertake.

I am autistic, which came as quite a shock to me. But it doesn’t end there. Once you start to recognise yourself you realise that lots of other companions are along for the ride. I was diagnosed as Autistic at aged 50 and that alone is a completely different story. Since then, I have been able to welcome on board ADHD, Dyspraxia, Complex Post Traumatic Stress Disorder, Rejection Sensitivity Disorder and Fibromyalgia. There are others, but they sometime stay at home whereas this gang always come along for the ride. And I am wondering if you might like to join us?

Lots of autistic people that I meet and speak to say that they don’t like to travel. It seems fraught with the dangers of the unknown and unpredictable. And of course, affordability affects this decision. Autistic people are more likely to be unemployed than any other minority group and more than any other group who are classified as ‘disabled’, whether this description is wanted or not. Add into this the fact that autism still seems to be shrouded in misunderstanding, myths, and misconceptions, it is hardly surprising that autistic people often find it easier and more comfortable to stay at home.

But because of these misunderstandings, myths, and misconceptions there are lots of people who have to travel, or choose to travel, but don’t recognise that some of the challenges are actually because they are autistic. If autism and the many other neurological differences we affect the ways that people feel the world differently were recognised for what they really are, then I believe that many more people would identify themselves and recognise their own difference. Others would no longer be afraid to disclose who they are and why.

I have always loved to travel and have always dreaded it. That is the dichotomy of my autistic brain. But after fifty years of chaos and confusion, I finally know who I am and why, and this is gradually enabling me to navigate my way better. For over half a century I was wandering aimlessly with the wrong guidebook and the wrong map, never understanding why I always ended up back where I started. I was trying to fit into a culture that I didn’t understand and that didn’t understand me. What I should have been doing was being proud to fit out. So now I am writing my own guidebook, with my own map, and trying to find the place where I do fit in, and where I am recognised for who I really am instead of being rejected and criticised for who I am not. I can only ever talk about me because I don’t know how it feels to be someone else, but I am hopeful that with more open and honest discussions we can all become more aware, more accepting, and more understanding of the differences of us all Different but equal; equal but different.

The Very Lonely Cloud.

Most humans want to feel valued and validated. Most humans seek out other humans with whom they form a bond based on common interests or values or motivations. I travel the world hoping to find acceptance and running away from the threat of rejection. If I can’t speak the language and they don’t get to know me, they might just think that I am quirky, and if I keep moving on without looking back, then I won’t say something wrong or bad. Wrong and bad have been my constant companions for over fifty years. Being misunderstood by myself and others has left me with my negative inner dialogue, always wondering what I did and why they didn’t like me.

Those who belong to the majority neurotype share a way of thinking. They have the same or similar neurological structures and pathways. Those of us who were born with more unusual neurology have often spent many years wandering the world trying to find out who we are and why. As a child I read stories of misfits seeking acceptance. I read about space and travel and imagined that one day I would find a place that wanted and needed me. My book The Very Lonely Cloud was my constant companion as it detailed a lonely and dejected rain cloud travelling across the world hoping to be welcomed but finding only angry faces telling him to go away and that he wasn’t wanted there. Finally, he arrived over a parched desert oasis, and they cheered his arrival and begged him to stay with them. Even now, fifty years later, this makes me cry. I have yet to find my oasis; I am still seeking a place to belong that likes me for who I really am. And so, I keep on travelling. Or running away. Or hiding. They all seem to be the same thing.

 Navigating a world without the right guidebook. (Tree thinking and Griff the Archanan).

Or, in fact without any guidebook at all. Dr Camilla Pang, author of Explaining Humans, describes what she calls tree thinking and Dr Chris Packham alludes to the same thing when describing the way he sees the world. Dr Pang opens her book by saying that “it was five years into my life on Earth that I started to think I’d landed in the wrong place. I must have missed the stop.” She goes on to say that she asked “mum, is there an instruction manual for humans?” I have been looking for that for over fifty years. It’s why I travel to study and to learn about these people. I have become an anthropologist and behavioural psychologist. I approach people like a research project. No judgement, no preconceptions, just a desire to learn more.

I think that it is like being the alien in the Men in Black films. Like being Griff the Archanan. Even the hat – especially the hat! He’s an alien in Men in Black. He is super anxious and is able to see multiple possibilities for every scenario and then to worry about them – ooh sounds familiar. Existing on a planet where I nearly look the same until I take off the hat and you see inside my brain.

Stereotypes and even the diagnosis criteria suggest that we have regimented routines. My journey each day is unknown and uncertain. I might like something fixed just to be the one small thing I know for sure but I’m not fixated by a routine or a schedule or a possible problem; I am obsessed with all of them. Dr Pang describes her autistic brain as being more like a tree. The myth seems to be that we have one idea in one box and we take it everywhere with us. In my experience it is the neurotypicals who do the same thing over and over and stick to the same beliefs without question. Camilla suggests that her thoughts run along different branches and then into twigs and leaves and all intwine back and forth reaching further out with each new possibility. When you live like I do, on an alien planet without a map or a guidebook, you have to plan much more thoroughly and carefully, you have to envisage everything that could go wrong, everything that could go right and then have an escape plan for when it doesn’t.

So, I have packed my bag at least two weeks in advance but then change the type of bag as I imagine the perils of each situation. Steps will need a rucksack. And navigating a city is too difficult for a case but a rucksack might be too small to take enough clothes to prepare for all weather eventualities. I take a woolly hat everywhere. And I do mean everywhere. Because, well, you really do never know. I might be cold on the plane. There may be air con in the airport. And an extra jumper. And lots of bags in bags – the little folded up ones. I absolutely love a bag in a bag. Everyone laughs but then I find them asking tentatively if I have a bag in my bag. Of course I do.

Pretending to be normal.

I was leaving the house heading for the airport and my husband leant over to check what was in my bag. Do you have clothes and shoes he asked? Any toiletries?  Nope, I said. Just some pretty hairclips, my notepad for thoughts and lots of books. He glanced in the bag and saw that the book on the top was called Pretending to be Normal.  Really?? He said.  Irony! I got it.

Imagine a theme park rapids ride that never ends.

I was trying to think of a way to explain the way my brain works and to illustrate that the idea of fixed routines is ridiculous because I have no idea what to expect. Social interactions don’t come with the inner secret guidebook that others seem to be born with. If having my 3 cups of coffee in the morning, wherever I am in the world is the only routine of the day that I can rely on and cling to, then I have to. It’s the other way round. I have about 2% of my day with certainly. For those with the guidebook so much is known and understood. It is they who do the same things over and over. They know what works and what to expect. I know what didn’t work last time but after that well anything could happen. And it usually does.

I wanted an image that could explain what it is like for me.  Every day and every night all of the time.  Seriously, ALL of the time! And the image that appeared was of a theme park ride in Gardaland Italy, called Jungle Rapids. I never go on any rides other than the tame water ones. Far too much could go wrong. I don’t like theme parks at all usually, but Gardaland has views over the lake and across to the mountains that drop steeply over the side and then climb up as they join the Dolomites. Can you tell that I love mountains. I love the power of nature which watches over us and tries to encourage humility given our brief time here. I find calm and solace in the silence of the mountains. Gardaland did not offer this, but I had little people who really couldn’t be expected to hike every day.

So back in the Jungle Rapids, the people are placed in rubber tyres and the tyres are pulled along the course of the water way through a series of rapids. There are sudden and surprising waterfalls which might soak the participants. There are hidden jungle creatures who will aim a jet of water at the boat and even worse, there are children on the shore whose parents have paid for them to use the water cannons which can be directed mercilessly at anyone they choose to drench.  At the same time as the rubber tyre boat is being catapulted along its course, it hits the waves and dips and dives, it collides with other boats and all the time it spins round and round. 

That, ladies and gentlemen, boys, and girls, is how I experience my brain.  Whatever the thought or the issue or the problem or the solution, I am on a one- way course that cannot be altered.  The speed is too fast, and I really don’t have time to think about anything other than being pulled along on an inevitable course that is already determined.  If I tried to jump, then the tyre might flip over, or I might be sucked under by the current.  And as I am pulled through the water, my mind spins, and jolts in different directions.  So many thoughts and fears that they are impossible to catch, and my anxiety washes over me as relentlessly as the waves of water that engulf the boat and its occupants without warning.

This is a metaphor for my life really. 

Difference, disorder, or disability?

Because autism is often discussed and diagnosed by deficits, and with lists of things that we apparently can’t do, the focus of articles is often on this alone, which inevitably just reinforces the belief that this is overwhelmingly a disability. It would be totally disingenuous of me to pretend or deny that the last fifty years have certainly felt disordered, and now that I understand more, I realise that my way of seeing and hearing and feeling and processing the world can certainly feel like a disability. But if society understood the true nature of autism and was just a little more autism friendly, then maybe my strengths would shine through, and we could discuss some of the positives of being me instead. There don’t seem to be enough examples of autistic travel or of successful people doing successful things because of, or even despite their autism. When I speak in schools, I am always told that parents and their children feel more hopeful about autism because they didn’t realise that it ‘could look and sound like me’. They believed the stereotype and for years so did I. Autism looks and sounds differently in us all, just like love and life and trauma and pain looks and sounds different for us all. Lots of people with neurodifferences say that small changes in environments and attitudes could make a massive difference. Travel is a way that I can hide behind more obvious stressful situations rather than having a meltdown in the supermarket which is much less understood and more negatively judged. When the plane is delayed and the delightful airline run away rather than give information and support, everyone is emotional and so I can blend in. But travel is also completely terrifying because there are far too many unknowns and uncertainty.

I start planning the journey to the train station or airport or whatever means of transport is needed, as soon as I book the tickets, or maybe even before. This could be a year in advance but already there is something unknown and I always work backwards so that I can fill in as many possibilities as possible. What if the Tube isn’t running? What if I forget my credit card or leave my passport and have to go back. There may be traffic jams and large queues at security. And so on and so on. Inevitably I arrive many hours early much to the annoyance of any family members who have acquiesced to my schedule demands. Any interaction with other humans causes me to shake and to sweat. I am totally prepared because I always have a bag in a bag. I should be able to whisk out the items for security. But overwhelmed by the noise and the lights lose the ability to function and fumble with my bag which is now tangled in my scarf and entwined in the small over the shoulder bag that I always bring so that I can see my things in front of me. The scarf comes so that I can clean my glasses and dry my hands in bathrooms that don’t have facilities, or those that are so disgusting I need to make a speedy exit. Travel and toilets is a whole new topic!

An anthropologist on Earth.

I always wanted to travel and to see new places. I made travel and people the special interest of my life. I thought that it might help me understand this strange planet. I hoped that I would find my tribe. Wherever I go, I study the language and the people and the social expectations. I ask questions and learn to say thank you in each language that a staff member speaks. I write it down and they seem to appreciate it. They even seem to like me. They think that I am just an eccentric English woman in a woolly hat. Difference is ok when difference is expected. If only that were true at home.

I grew up in an abusive family and the idea of travel was my dream to escape. I studied my Atlas and imagined myself in the pictures in my book. Like my lonely cloud there would be a place out there for me. I liked to observe. I do so in order to learn and to try and make sense of a planet that has always felt confusing and uncomfortable for me. Finally knowing who I am and why is both liberating and debilitating because whilst I now understand that I wasn’t as wrong and bad as I thought I must be, I also now have to recognise that in the past, present and future I probably will continue to struggle to understand and may still have to sit on the fringes looking in. Well, until I change attitudes and understanding of neurodivergence that is!

But I watch and study and comment and question in order to learn. In the workplace or in the pub this is often not well received, and I have never understood why. I didn’t know that the majority of people, born with the more frequently occurring brain types, have a sort of code, a rule book of secret intuition that they are born with. Not only did I not get this book, or even the memo to seek out one, but now I realise the damage done by forcing young people to follow rules that don’t apply to them and make them apologise, hide, and deny who they really are. We don’t do this to different cultures or religions or even choices of sexual orientation. But trying to ‘normalise’ those of us who feel the world differently is still happening.

But when it comes to travel these weird and wonderful skills are perfect. How else can we embrace a new country and culture without watching and analysing and asking. How else can we try not to break their rules and to show respect for their culture without studying it and researching it. So, when I am travelling, I am allowed to comment on everything. Curiosity and inquisition are ok now. People seem pleased and often proud to divulge information about their lives and their beliefs and the country that they live in.

I am always thinking, and I love the wonder of the world, of me and of you.

It is all amazing isn’t it?  My brain is wired wonderfully so that it is perpetually looking and learning. What’s next?  What’s new today?  Why is that like that?  Why did that happen? Tell me about yourself.  Tell me about the mountains and the stars.  Tell me about Love Island – no not that one! To me and my neurodiverse brain, everything I see, and hear, and feel is new and special and worthy of awe and wonder. I never pass by a building without noticing the design and architecture. I see the people whose lives reside within, and I wonder about them and their stories. I watch the river and the ripples and see history in the ebb and flow. I bow down with the respect that I believe nature craves. The mountains are all seeing and powerful; we are insignificant in their eyes, and I love this. They were here before, and they will stay firm long after I am gone. I don’t want to waste a moment. The world is still turning and so my thoughts are still flowing. How could it be any other way? 

My neurodiverse brain might show you something new, it might make you see something differently, it might make you stop and see the old lady struggling with her shopping, the homeless man who doesn’t see the sense in being here, or the children playing with the blank pages of a book that is not yet written. I really don’t mind that you don’t think as much as me, so please try not to mind that I do. 

An Autiphany in Thailand – my word.

I am always on the lookout for a new autiphany – my word to describe those moments of autistic realisations. When every day is a surprise but is the culmination of planning for it and dreading it, there are always new autiphanies to be had.

Eager for a new adventure I set off to meet my daughter in Thailand. The truth is that in the middle of her 9-month trip she wanted a nice bed and our shower. And I was excited to help. Our new hotel was simply idyllic. Probably the most stunning place that I have ever been, and I have spent over half of a century stunning seeking. Only with beauty and nature does my mind have a chance to focus away from itself and become for a moment entwined with the wonder of the land and its ability to change its mood without fear of rejection or punishment. I am obsessed with the fear of rejection and punishment, and I realise that my husband is too. Before this trip I thought that he chose to give those to me as a sign of contempt for who I am and as a way to keep me at a distance. I have often asked him if leaving me would not offer him the freedom he seems to crave. What I should have been doing was offering him the freedom to be himself without fear that his choices would be personalised and internalised by me as evidence that he doesn’t care about me. I need to think because I am starting to be afraid that I may have been seeing things the wrong way round.

Of course, as is the way of being me, I digress. The thoughts are never ending and continually spiral out of control darting back and forth with the endless possibilities of everything. I think that is why I am easily abused and unable to say no. I spend so much time considering what and why and when and what the consequence of every possible outcome might be that it becomes too late to stop it.

My daughter and I ventured out of the hotel to find a more real, local and of course, cheaper massage. I paid for pain but also for the epiphany. The women dug knees and elbows deeply as she pushed my face into a dirty mattress. Instead of massaging the scalp she pushed her thumb repeatedly into the sides of my head. My daughter thought that my tears and my shaking were totally unwarranted but asked why on earth I didn’t tell her to stop. And why didn’t I tell her to stop? I thought that the next moment would be better. I thought that the painful bit would end, and something better would be next. I didn’t want to offend her. I didn’t want her to be upset. I didn’t want her to get into trouble. I didn’t want to look silly or embarrass my daughter. I lay there desperately wanting it to be over but paralysed by the endless possibilities that render affirmative action impossible. And I realised that that is what I always do. If I don’t know what the end will be how can I decide in the present. If someone is unkind then I presume there is a story. If someone is abusive then I presume that I have done something wrong or bad. If I should walk away, I don’t. I never walk away because I don’t want to be blamed for rejected someone. I don’t want anyone to feel like I do and so my life has been a continual parade of takers and users and abusers whom I was too scared to walk away from in case it was my fault. I should have sat up and asked her to stop. I should have taken control of what I wanted and needed and not been consumed by what was the right thing for her but instead looked inward at what was the right thing for me. I should have said no.

Well, how was I supposed to get there without a map?

Trying to navigate on Earth has been half a century of wrong turns, dead ends, complicated roundabouts and lots of bumps, scratches and crashes along the way.  I simply don’t have the right map.  Writing this won’t necessarily improve that but learning more about me and about them is certainly helping me to understand why it happens, even if I can’t always stop it.  It is also giving me the opportunity to explain.  At least now I can explain that the reason I am down the wrong road badly manoeuvring, is because I am Autistic, and I never ever see the danger coming. If better understood and embraced – a sense of humour would be needed – it would be fun to be in the car with me and live my way.  It’s a go getting, positive, hopeful way to be.  Who knows where we will end up today but to quote, badly, from The Polar Express – when a train pulls in, you should step aboard no matter where it is going. I have been getting back aboard that train for years. 

Now that I know there are hidden rules and secret timetables that are never made available to me, should I stop?  Can I stop?  Well, yes, and no.  I am certainly more aware and afraid that the journey will not go well, and I will end up lost, alone and confused – again.  But what is the choice?  I read about and talk to so many women with AS who have given up and are hiding at home alone wondering what they did to offend this planet and why they couldn’t find a place on it.  I will do anything and everything to change this. We are lost because no one realises that we don’t know the way, and they then chastise and criticise us for not arriving or arriving too late.  They witness a clumsy attempt at a 3-point turn in the road and think that we are stupid or careless.  They don’t realise that we simply can’t judge the size of the car or the road. (That was a metaphor, not an insinuation that we can’t drive.!)

 It is a can’t thing.  Never a won’t thing.  With me, what you see is always what you get; what I say is what I mean. No hidden layers or meanings or judgements.  If you need the route, you can be sure that I will help, and that the advice will be thorough.  Why not?  I know that I just said that what you see is what you get.  I did say that.  I was totally sure of that until it was pointed out to me that I ‘appear’ to be something completely different to what I think that I am feeling.  I am upset and scared and as always, I presume that the words are enough.  I presume you will hear them, and see them like I do, and no matter what you see, you will understand and will help me.  Just another thing to be so horribly wrong about.  Apparently, I might appear fine, or angry, or aloof, or something else that is perceived as negative.  Even if I predict this and tell you the true feelings, it is too late.  What they see if all they accept.  Again, this is something I really want to help change.  I had no idea that I was doing this until I started researching Autism, started watching and asking.  I don’t know how you want me to look at you in a split second.  I can’t imagine that, and I can’t pretend that.  Please accept that I am always afraid, confused and lonely and take it from there.  Does that help?

Every day is like camping at Base Camp on Everest – or so it feels to me.

I am not an expert on neurotypicals but in over fifty years I have seen lots and read lots. More recently I have read and researched the neurodivergent brain. So, I know that they are different. An average NT gets up on a planet they understand and feel secure in most of their knowledge about it. They know what to expect from their colleagues and what their colleagues expect from them. A meeting with the boss might be worrying but with their special skills menu they will know what to say and more importantly – what not to. And so, for them it is a camping trip on a mildly windy day. They have the instructions for the tent and are confident about the assembly. Some bits might be missing but they can borrow a tent peg or find a rock nearby. There might be some undulating ground to avoid and if the wind gusts with menace they may have to work quicker and harder. They may need another jumper. But they know that they have stayed happily in that tent before and have survived to rise in the morning with the sun. They know that if a storm arrives, they can hastily retreat to the car and go home. They know where the car is parked, and they know the way home. They may be damp and disappointed, but they will put the kettle on and plan the next camping trip.

I am human just the same as you and I have arrived with my trusty tent ready to embark on my camping adventure. But I am at Everest Base Camp. All around me are people with different languages and customs. I need to try and communicate with them so I can find out where to pitch my tent and how to buy some food and if anyone knows the weather conditions for the next day. A storm of snow or wind or both could make erecting the tent impossible. If this happens then I have to find shelter in this desolate and inhospitable place. I have no idea how I will attempt the ascent to the summit tomorrow. I have no idea what I will awake to find or even if I will be able to sleep through any of the night.

Just like the neurotypical trip, we are both camping, but the harsh unknown, unpredictable nature of my surroundings and the lack of anything known or secure, means that my energy levels will drop rapidly, it will be difficult to relax and when I spill my only flask of hot coffee it will be enough to reduce me to a heap of sobs.

If this is me in the office, you will think that I am overreacting to something as simple as spilled coffee. You might tell me to stop being pathetic and that I am embarrassing myself. The coffee is irrelevant. I know that it makes it easier for people to look away and walk away if they believe the myths and misconceptions. Stay away from her, don’t invite her, she always overreacts. She gets upset at the smallest things. But if you’d watched a documentary of me ascending to Everest Base Camp alone, watched me pitch my flimsy tent in wind and driving rain, watched me struggle to find food, and watched me trying to decipher the map for tomorrow’s climb – then you might just understand why spilling my hot coffee mattered.

Aren’t we all on our own journey; aren’t we all travelling to an inevitable end.

If so, does it really matter how we feel and see the world differently. Is there a possibility that we buy each other’s guidebook and take a look? We would do it for Thailand or India. Can we do it for each other?

 I’d like to end this first part of my never-ending journey by quoting Theodore Rubin, an American psychiatrist.

“We are all of us exceedingly complex creatures and do ourselves a service in regarding ourselves as complex. Otherwise, we live in a dream world of non-existent, simplistic black and white notions which simply do not apply to life.”