Let’s dispel some of the myths, misconceptions and misunderstanding!
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 neuro different 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 shouldn’t be there and when it is, as far as I am concerned, it 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.
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.
I try to write in a way that translates because at the moment there doesn’t seem to be enough that does. The academics produce research papers with jolly big words and the autistic community write lots for each other. But until we explain difference to the neuro majority groups we stand little chance of the understanding and acceptance we need.
One of the biggest areas of confusion seems to be sensory experiences. They are either overlooked or not believed. I have created The Sensory Experiences Project aiming to explore a wide variety of voices from diverse groups and across the globe. If you can help or contribute then please check out my recent blogs which contain the introduction video and links. The bigger the choir – the more noise we can make. Or just contact me on feelingtheworlddifferently@gmail.com
or find me on my website feelingtheworlddifferently.co.uk
Autism ADHD and so much more. 
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