Autism ADHD and so much more.

“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.” Theodore Rubin, American psychologist.

I am not a psychologist or a psychiatrist; I am not a philosopher or an anthropologist. But I have studied humans for over half a century and feel that I might know some stuff. I have watched and wondered in both awe and astonishment. Dr Camilla Pang, the author of Explaining Humans, says that she asked if there was a manual for humans. I would certainly have liked one of those. I knew that I seemed to be different, and I knew that I never seemed to fit in no mater how hard I tried. And boy, did I try hard. The people pleasing, accompanied by its best friends no boundaries, and an absence of understanding that I can use the word no, are an entirely different discussion for another day.

When I don’t understand something or someone, I just try harder. In Science at school, I asked them to show me that there was oxygen in the air and to demonstrate how the electricity – whatever that is – was coming out of the plug. They declined. They threw a circuit board at me and asked me, not very politely, to leave the lesson. I did leave and never went back. Despite it being a mandatory subject, I never attended any Science classes because I was deemed too much of a problem. Asking questions has continued to be a problem for everyone around me from that day on. Or so it seems.

The Science lessons, followed swiftly by the Maths lessons and then the English lessons, all quickly rejected me. In Maths they wouldn’t tell me why there is a table of numbers other than to say that it is useful for life, and we need to know it. Certainly, some people need to know this, but my question was why do I? I have only learnt very recently that most people operate on a system based on themselves. If they need to know, then that is the answer. Which to me is not an answer at all. English, I loved but also hated. I have been an English teacher for the last 30 years for exactly that reason. If I can figure out this nonsense, then so can you. And many successful and more confident students later, this is one of only a few things that I am proud of and think that I did properly.

And if the paragraphs above are just a short introduction to the way that I think, then you are most welcome. Buckle up because that is the tip of the proverbial iceberg. I am the person who points out to you that the highest mountain of Earth may be Everest, but the tallest, as in the biggest, is in fact Mauna Kia which is a volcano in the Hawaiian archipelago of which we only see the top part. I am even conscious, in the modern world, that using a five-syllable geographical term may deem me worthy of rejection.

All of this sets the scene for the story that I am about to share. I don’t think quite like you might expect. And this means that I feel, and see, and hear the world differently. I feel and see and hear things with an intensity that can be delightful, or it can be debilitating. Am I disabled? Well, it depends on how you look at it. It depends upon where I am, and when I am, and what I am. But most of all it depends on you.

Dr Luke Beardon is the senior lecturer in Autism Studies at the University of Sheffield. He has published many books and is an advocate for a new understanding of autism and of neurodivergent ways of being in the world. His ‘equation’ states that it is the environment in which a person is placed, that affects, or determines, the amount of discomfort, disorder, or disability that they experience. Change the environment and not the person he says. As do many others. But although many people say this and write about this, very little actually does seem to be changing. We are saying lots about changing but not much actually is changing.

How do I know? Well, I belong to an international group of adults who discuss neuro differences and help and support each other. We have been careful not to indulge in any judging or criticism and to welcome any views and any voices if they need help and are kindly meant. If the words are not those that are deemed acceptable then we listen and understand the story that is beneath, rather than rejecting or cancelling the person whose story it is.

So, my scene is set. You already know that this is something to do with autism and disability. I am told that the topic needs to be clear early on so that the reader will engage. I am an English teacher and understand how writers use a hook to create suspense and tension. But the problem with autism and disability is that they often create a switch off and a shut down. The audience decides that this is not relevant to them, and they leave the building. If trapped and unable to physically leave, they may express interest, or at least try to listen. But if asked later. Like a teacher checking that the concepts are understood, the sad truth is that they are not. No matter what I say, and I say lots, people have already decided. They have decided that autism is something else and is not me, and then they talk about autism even though I am still there and can hear them. And even though they know nothing about it. Even more baffling is that most of what is said is delivered as statements. Not even questions. So, the old favourite of ‘but you don’t look autistic’ is never a question. It is used to close down and move on. If autism isn’t me, then it is something else. And if it is something else, then it is not relevant here. They apparently know more about what it isn’t – i.e. me – than what it is but seem rather reluctant to ask and learn more. Interesting.

I didn’t know just how different I am until six years ago. I had wandered around in chaos and confusion for over half a century trying to fit in and trying to find places to belong and be accepted. I only knew the stereotypes which range from Forest Gump to Rain Man and never in my wildest dreams or nightmares did I consider that I might be autistic. Especially a sociable, articulate, spontaneous, fun loving, public speaking, female who is autistic. Autism was boys and especially boys and trains surely. Important caveat here. Sometimes I do wonder if it might be better to have a bit of humility and humour about one’s own stereotype. I jolly well love trains and timetables. There we go. I said it. I have a copy of Bradshaw’s European manual from the 1800s which Micheal Portillo lugs around. I have the European rail network complete timetable and I booked for my family to take the new gauge changing line across the Swiss Alps in its first month of opening. At university they called me Tracy train and wittily said ‘she knows her timetable’. If only someone had added on what now ought to be obvious!

The story that fills in the gaps is yet to come other than to say that my life unravelled completely, and I found some new companions for my journey. For now, I will try to keep on track, see what I did there, and tell you the story about the Sunflower Lanyard and why I think that I don’t want to hide my disabilities. If that is what they are. And when I say journey, I am aware that this is a very X Factor sob story way to describe life in order to garner sympathy and more votes. When I say journey, it really does mean travel. And when I say travel, it really means life. But again, that is to be explored on another day when I do hope that you will join me, and we can take a jaunty trip together. And you thought that autistic people couldn’t use sarcasm, humour, and metaphors?  My pedantic brain wants now to tell you that of course I have been using a semantic field with words that link to travel and trains. But since my diagnosis and my subsequent exploration of how wrong I have been about most things, I learned that people don’t like corrections. This is yet another minefield that I only wish I had known about in the first half century of my life. To help someone learn and know more is to me the greatest compliment. This would be because they care about me, and want to share knowledge, and to protect me from incorrect assumptions or what I think are facts. On this, as with much else, I was totally wrong and still really don’t understand humans.

And so, only 1500 words in and we come to the story. Well nearly, but another thought popped in. You can probably guess that the ADHD force runs strong with me. I always tell stories chronologically and had never realised this until by daughter came to a doctor’s appointment with me. They allow five minutes and just one ailment. I start at the beginning. The 1960s and go on from there. It never occurred to me that there was a reason why I never really get past my O Levels in 1984. Luckily my daughter was on hand to point out that I really should start at the end and work backwards if I hoped for my symptoms to be heard. Who knew. Although ironically, this is exactly what I do in most other areas of life. I always go to the end first so that I can fill my notepad with the myriad of things to worry about and plan for. Some call this catastrophising. I do not. I call it executive planning. I have a blog, a book, a podcast, and a YouTube video explaining this. I have created all of these and then because I struggle massively with Rejection Sensitivity Disorder, I post them and run away. I may even have sold books, but I am too scared to look.

And so finally this brings us to the do you have anything else moment. And the reason that I would like to review the way that the Sunflower Lanyard is described and promoted. My fear is that once again we meet the dichotomy that is the difference between what people say and what they think. If I say autism, what do you say? But when I say autism, what do you really think? Daniel Kahneman explores the heuristic of confirmation bias. Saying what you think is needed. I think that this may be happening more than we realise. I would like to hear what is really thought and what is really understood – or probably not. As a teacher I told students that the most important thing was for me to know what they don’t know. Without that I couldn’t help them. I can’t fill in the holes if I don’t know where they are. And to use a line from Shirley Valentine – sorry anyone under 50 – but how can you know anything if no one has ever told you.

Blimey I digressed again. You think it is tiring reading this or listening to this? Imagine what it is like to be me. This doesn’t stop when the sun goes down people!

When you live your life in a maelstrom of past, present and future all at the same time, this time travel doesn’t matter, but I know that it can be exhausting, frustrating and confusing for anyone who gets into that Tardis with me.

So, I had arrived at Heathrow Airport during the Covid pandemic. I was fortunate enough to have an EU card due to my husband’s job and could therefore travel much more freely. To be honest, plane loads of people were travelling very freely but the British media had managed to convince the public that this wasn’t happening. Again, yet another story for another day. I arrived when only one terminal was open and the queues for passport control to enter the UK were around 5-6 hours. It was utter chaos. No one had the correct documents available. I, of course, had a folder which contained plastic wallets which easily showed my vaccine certificates, my covid tests, my residency documents and so on and so on. Executive planning! Some people had come from countries on the red list, and they were being rounded up in the queue. By which point this was a pretty pointless use of quarantine I thought. Lots on my plane had come from red list places but just changed airlines in a European airport. A man wandered around with a red piece of cardboard asking if anyone wanted to come forward. Oh yes me please. Please may I go and be imprisoned in the travel lodge for 2 weeks.

The disorganisation was so overwhelming that after about four hours I just couldn’t cope. I wanted to go to the front and start organising. One queue for those with paperwork in print. One for those who have it on their phones. One for those who have phones but can’t find it and another for those who didn’t know they needed it but somehow still managed to board the plane. Although the noise and the lights were attacking my sensory systems that go very quickly into overload, and although standing for so long was painful and although my clothes were starting to hurt and my fight or flight was triggered by the sense of being trapped, the main thing that was making me genuinely unable to regulate my emotions was the chaos. The lack of anyone helping or taking control or letting people know what was happening. This level of uncertainty and worry sends my system into a spiral of fear. Like silence, the lack of certainty fills me with dread, and I start to shake and need to rock and to talk to myself out loud about everything that I can see and hear and feel. Sometimes I become mute but others the emotional regulation comes from attempting to narrate it all away.

I have never done it before or since, but I walked over to a member of staff who was standing underneath the picture of the sunflower which was emblazoned on my lanyard. I asked for help and asked of there was any way I could get out of this purgatory. The lady called over more members of staff to inspect me, I think. One of them said, well what do you have. What do I have? Now I know that the lanyard represents hidden disabilities, but I would prefer people knew so that they might learn more, be able to recognise better, and because I think that they are always silently thinking to themselves, well what do you have anyway?

Me – oh well I am autistic, and I am really struggling in this environment.

Them – autistic? You don’t look autistic? What’s the matter with you?

Me – well I just get overwhelmed with everything very quickly and I feel unable to cope.

Them – it’s a long queue and everyone has to stand in it. Do you have anything else?

Me – anything else? Oh well yes, I am ADHD and have real issues with Rejection Sensitivity Disorder.

Them – I thought that was badly behaved boys isn’t it. Do you have anything else?

Me – hmmm, well, I am diagnosed with Complex Post Traumatic Stress Disorder.

Them – would you like a chair to take with you in the queue? Or do you have anything else?

Me – I am diagnosed with Fibromyalgia and Dyspraxia if they might help.

I don’t think that they knew, recognised, or understand a single thing about any of these conditions. I think that some humans need to make it about themselves. To feel empathy only if they could imagine having the same thing.

So, I got out my phone and showed them a photo of the scan detailing my brain tumour. It is in my pituitary gland and at present does nothing, affects nothing, and may well be an incidental find that I will live alongside forever. All of the others control my life and affect the ways that I feel and see and hear the world differently and more intensely and often painfully. But this was what they had been looking for. The words brain tumour conjured up their worst fears. This could be cancer. This could be me or my family. This could be terminal.

And so, I was offered a wheelchair, which I declined, and I was escorted to the front of the queue with faces looking like they felt sorry for me, or maybe for themselves on the off chance that this might happen to them.

The Sunflower Lanyard is the most marvellous idea and brings comfort and care to many people. If this is enough for someone to be helped in a difficult environment, then brilliant. But I would like to delve deeper and launch an identification and recognition course that helps people understand difference simply because it is different.

In his book Factfullness, Hans Rosling asks people to be prepared to be wrong and to question the world and learn new things with awe and wonder. I don’t want the sympathetic nods and sighs of people who see the lanyard and have no idea about who I am and what I experience. I would like my hidden disabilities to be seen and heard and understood and accepted. I don’t want sympathy for the unknown. I want accommodation for what is known. Change the environment and not the person.