Autism ADHD and so much more.

I have no idea how you see and hear and feel the world around you. I have no idea about how it really is because I am not you.

From words shared and experiences divulged I might figure out that the pain I feel if I stub my toe, is the same, or at least sounds similar to the pain you feel. But how do we measure pain. How do I feel your pain in order to compare? I am wary of presumptions. I worry about presuming a similarity without any reference point or indeed, any facts to back it up. There seems to be a need within the neurotypical world, to find comfort in sharing the same and being the same. I understand that because finding an autistic female friend, who just understood without explanation, has been amazing. So I get the desire for similarity and for seeing and hearing someone who sounds like me. But, nevertheless, we still don’t know the depth of the thing we are calling pain.

Somehow I want us all to be able to find ways to respect, recognise and embrace the different ways we see and feel and hear the world. The neurotypical world seems to like easy reference points and prefers to ‘normalise’ experiences. I’d love it if we could do the opposite; I’d love it if everyone wanted to know the differences and probe their depths.

Sensory experiences are often overlooked and not fully discussed because, I think, we don’t really know that they are there. I don’t know that your pain from a paper cut is different to mine. Even if your shrieks are louder than mine, I won’t be able to interpret that onto a pain scale that I can feel.

But, and the more I have learned about myself and others, the more I have realised that the reaction of others is the indication that they don’t understand and that neither did I.

Me – I find cutting my nails incredibly painful, virtually unbearable. Don’t you?

My son – Don’t be ridiculous. You can’t feel pain in nails, you are making that up, you are imagining it, that simply isn’t true.

Me – Oh I see, well thank you for knowing how my body feels the world – thank goodness you are here. (Or something like that.) 

What was I supposed to say? Why should I have to fight and argue about my own way of feeling the world and why would it be doubted or disputed or even ridiculed?

People believe in so many things without any proof and often without reason or judgement, but when I describe senses outside of their experience I find myself dismissed. I want to find a way to change this; I want to find a way to challenge this system and replace it with another. A better, more honest, more inclusiveone for everyone. That’s not a bad idea is it?

And before I try to talk about the way the world feels to me, I want to mention the pain thing. I want doctors and teachers and parents and specialists and family and friends to understand this.

There is a thing called catastrophising. I don’t like this word. I think that it is in fact, executive planning. I have blogs and videos and podcasts about this. I have a blog and a video about Griff the Archanan, a character who can see and feel and hear multiple possibilities and plans for them all. Planning for the worst scenario alongside the best seems perfectly sensible and reasonable to me.

Why wouldn’t everyone want to do this? So, my scale of reference goes from where I am to where anything is possible. Bear with me, this I relevant because when a doctor asks how much pain I am in, I will imagine a World War 1 chemical attack – the worst – and I will conclude that my pain is relatively low.

I know that I can only speak about myself but in reading the words of others it does seem that other autistic people are often misjudged because their field of reference is not understood. Often, we don’t know this ourselves because well, how could we know that everyone else is not doing this and feeling this if we don’t talk about it, and if we then don’t believe someone who does try to explain.

So I will try and explain and I hope that I might be believed. Not so much for me, but for the idea itself. I think that I see and hear and feel the world differently than you might but then again I might not, because I don’t know how it feels for you until we talk about it. 

The next problem is putting this in language that can be understood. I spoke with a journalist who wanted to know more about autism. I explained exactly what I am trying to say here and at the end of it she said – oh I see, it’s like being continually irritated.

As you may imagine I have written a blog and create a video and podcast about this because I was upset and shocked. She wrote in her article that autism for me was like being irritated. I contacted her to say that I would never have used that phrase. Eventually she checked and apologised, recognising that I said 200 words and she summarised them with that. But I realised that possibly we broadcast on different frequencies and for her to reach her audience she had to change my words into their ‘language’. If change and understanding are to happen, we have to start tuning in our dials to the frequencies of others. We have to try and translate.

Sensory wonders and the way I see and feel and hear the world.

Ikea – the bright lights make me feel sick and dizzy and I start to sweat and and have an overwhelming need to run away or curl up on the floor and cry. For years and years I thought that I must be angry about something. In fact, I believed that for no good reason, I was unduly irritated. I bought into the language being provided for me.

In restaurants with bright lights I might presume that I felt unwell or that the people didn’t like me. I might even have cause some sort of argument so that I could leave and run away. If I’d known that I was seeing and feeling and hearing where I was, I might have been able to explain. But maybe I wouldn’t have been believed. And that is understandable because it is really hard, virtually impossible to feel and hear and see something that you don’t. If you get what I mean.

I have to look at calm, tidy, well organised and hopefully beautiful things with attention to detail. This is misinterpreted as fussy or awkward or ungrateful. When I say that I have to, I don’t mean that I demand it, I mean that without it I feel sick and then anxious and that desire to run away or to scrape my skin off is overwhelming. Imagine that the car in front starts to skid and flip and head towards you. I don’t fully know but can guess that you might want to avert its impact, might scream and panic and be paralysed with fear or helplessness. Well that’s me if the seat in the restaurant faces the bin, or dirty tables, or the cleaning station, or the toilet. If there is noise from music or loud penetrating voices – don’t go to America – then I can’t hear the thoughts in my head, I can’t form my own words and I can’t hear those of the people that I am with. I want to run or curl and cannot eat the food and can’t taste any of it even if I try. I really can’t explain any of this but it is true and it is the way that I see and hear and feel the world differently. I am not being awkward or fussy or ungrateful and I am really sorry to tell you that when you tell me to just get on with it, I want to cry, I probably will cry which someone will say is pathetic or an overreaction. For years this has been the pattern for me.

Now I know it is not because of any of those accusations. It is because I am autisticand I see and feel and hear the world differently. More intensely maybe. I value beauty and I appreciate and often worship the wonders of nature, or of people, or of an idea. I often seem to have seen more and felt more and heard more than others have noticed. Different but equal; equal but different.

And just another point on the theme of just get on with it. For me, and I believe for many other autistic people, it is not that we are not trying hard enough, it is not that we just haven’t practised enough or are not being stoic enough. It is simply that can’t means can’t in the same way that it would if someone insisted I leave the table and fly home using my wings. I might aspire to do that, I might have lived for 50 years wishing that I could do what you seem to do, but I can’t because I can’t, not because I won’t. 

Wires have to be hidden. I can’t sit in a room, can’t stay in a hotel and can’t be in a restaurant where I am looking at trailing visible wires. They wrap themselves into my sensesdemanding attention. The view is obscured and blighted. Imagine that whilst dining, a stray dog defecates next to your table. I am reaching for comparison here not to be facetious, but to try and explain the way my body and brain senses things, no matter how bizarre that might seem.

It might seem unbelievable to you but for me it is very believable and I would like that to be believed – if you see what I mean. Just because it doesn’t happen to someone else it doesn’t mean that it doesn’t happen.