Updated: Jul 12
Well after lots of kind words of encouragement I have decided to talk some more about my autistic brain and the way I see things. If me talking about this helps more girls and women to not have to wait over 50 years to recognise themselves, then it’s worth the risk of embarrassing myself.
I find myself talking lots about the difficulties and challenges that my brain has had to face and whilst the struggles are ever present, there are loads of positives about my non-stop brain. Because I don’t understand this planet,I am always trying to study it and to learn. I never want to miss a thing and then I probably want to tell you about it.
I look around and think wow 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 know 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.
The D in ASD, as far as I am concerned, is for different and daring and driven and dynamic. It is not for disorder or disability. I mean, my brain can become disordered and can present as a disability but only because of the external expectations that come with misunderstanding. If we start to change the perceptions, create understanding so we can be accommodated, and start embracing our differences then my positive D’s will shine through.
Of course, if you are comforted by the words disorder and disability, then you should use them. We will all cope differently with diagnosis and with the realisation of - so that’s why I do that – and this – and why that happened etc. If disability helps with support and understanding, then fab. If taken willingly then why not, but if forced upon us in a non- consenting way, then I have to ponder what to do about this. Who has decided the standard brain? And why? Everyone is different. Hurrah for that. And if we are a different kind of different, well then surely even more hurrah. We just extended different and made it even more – well different. If this was a sweet shop, we would be overjoyed that the choices extend well beyond the barley sugars surely? Who wants a menu with the same 2 dishes that they have ordered time and time again? How ridiculous. I want a menu that gives me an overwhelming amount of choice. I want cuisines from around the world with myriads of flavours and colours. The world would be a very boring place is we all only ate jacket potatoes.
I love jacket potatoes, but only when I make them into my own special fluffy jackets. I take the mash out, mix it with cheese, butter, sweetcorn and maybe pancetta, and then dollop it all back in. Years ago, I was invited to submit a recipe for the village book. Seriously? All of the other women submitted French classics and Viennese Whirls – or something similar. I totally missed the point, of course, and gave them a scruffy bit of paper entitled Fluffy Jackets. I then explained in detail how to make a jacket potato. My family laughed but not so much hilarity from the coven of women running the Village Hall. Anyone my age who watched The Fast Show will recognise this. I am always that character saying – I’ll get my coat.
But who I really am is actually -
Griff the Archanan.
It's like being Griffin the Archanan. Even the hat – especially the hat! He’s an alien in the film 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 you nearly look the same but then, just like Griff, I take off my hat and you see inside my brain.
There seems to be another myth type misconception and misunderstanding about routines and regimented behaviour. And here comes the disclaimer – some people with love their routines and some are probably fixated by them or even stuck in them or liberated by them – how do I know. I know about my autistic brain and the way that I see it. That’s all. How could it ever be any more or less than that? I’m not going to apologise for the way I see it because that’s just how it is for me. And in talking about this I am hoping that some might resonate, and some might enlighten and educate. If nothing else, I get the feeling that my friends are now saying – oh so that’s why she is like that. We all knew she was an alien but Griff you say. Tell me more.
I’m not fixated by a routine or a schedule or a possible problem; I am obsessed with all of them. There is a marvellous book by Dr Camilla Pang in which she tries to explain being human. I am not using the word ‘tries’ to suggest her writing isn’t good – it’s amazing – but by that I mean that she attempts to unravel the unfathomable. She 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.
Anyone who has spent time with me knows that everything will be planned to precision. They say that they have a better time because the train was booked and breakfast was at the right time to allow us to leisurely get to the station, the theatre was planned with seats accessible to the toilet and interval drinks ordered.The restaurant is booked based on the culinary preferences of the guests and a request has been sent to ask that the table not be next to the toilets or the door. This is not because I am fixated on any of these particular things, but I need there to be a thing. I can’t just venture out into the unknown. Every minute of every day is a maelstrom of unknown for me and so if some things can be in place to keep me just slightly grounded then that’s why they are there.This idea of a hidden intuition that apparently neurotypicals have is fascinating to me and so let’s think about that next time.
The bowl and the spoon.
The possibilities of each new day are endless and unknown, so if just one thing is fixed or certain then at least that’s something. I am not obsessed with this thing or fixated on routines.I am actually overwhelmed and confused by the myriad of experiences that will throw themselves at me each day, knowing that my logical brain will stress and strain to navigate all of this. If one thing is known, it is because everything else is unknown.To me, it seems that neurotypical brains cope with far less because their intuition allows them to already know what is coming and so they don’t plan and prepare for what isn’t – if you see what I mean.
Now this, I really like. It really helped me to understand being me and I think that explaining it here might help to pass on my aha moment. The lovely professor of autism studies at Sheffield Hallam Uni, writes with such warmth, kindness and understanding towards people on the spectrum, that I would love to meet him and give him a hug. Too much, too soon? He talks about the wonderful honesty and loyalty of the people he has met, but he also discusses the challenges that are faced. One of the stereotypes of autism is the repetitive or fixated behaviours that are viewed as inflexible. Whilst it is true that these exist and are indeed often not up for negotiation, what is not discussed is why. Luke Beardon gives the following example about a bowl and a spoon. It is only his theory, and I know there are loads of other ways and reasons which could be discussed, but his explanation felt like it fitted me, and could help explain why I am like I am.
He explains that for a neurotypical individual, about 95% of their day is known. It is something they feel comfortable with and know what to expect. If something unexpected should happen, they have their intuition and their rule book which will help them glide on through. So, the 5% of uncertainly will hardly even make their boat wobble.They may not even notice. He suggests that for a person with autism the opposite is true and this I can believe. Because most of their day – 95% - will be filled with uncertainty, they need to use the remaining 5% for things that they can rely on and depend on to be certain and true.The boat for the autist is always rocking back and forth and sudden waves hit and wash over it, so if the routine of a 9am coffee is the only thing they can be sure of, then it needs to happen. If they always eat out of a certain bowl with a certain spoon, then they need this to provide something known before venturing off again into the great unknown. What I am saying, is that it may not necessarily be that they are obsessed with the spoon – as stereotype would suggest – but more likely that a calm routine of something familiar provides a brief respite before the storm. Some people may indeed love just the spoon, and that’s great too, but I think that from outside looking in, they think that we are not flexible. The truth might be, that in fact, for some of us, we are incredibly flexible. Being tossed and turned across an ocean of unknown currents and dangerous shores makes us expect the unexpected. It is nice, therefore, to sometimes have a trusted oar to cling to.