There were two demonstrations in my town this weekend. One was by the Scottish Defence League protesting about the building of a mosque and the other was a counter demonstration by a collection of organisation deemed “anti-fascists” by the Press. My partner went on the demonstration under a  “pro diversity” stance but she was nervous about going because she is mixed race and therefore a possible target of racism. The demonstrations went without a major incident (there were rumours of fighting and later it was confirmed that an AntiFasc had been arrested after avoiding the police cordon) and my wife came home content that she had shown her support.

I was out riding this morning and was asked why I hadn’t supported my wife by going on the march and I replied without any thought I suppose, “I’m autistic, I don’t like crowds and confrontation”. Another friend mentioned that her husband had gone, inferring that he is autistic too. The conversation moved on to why the friend hadn’t gone.

Shortly after I found myself cycling alone pondering the words. I guess I was annoyed. I knew I had supported my wife by listening to her and her worries but also in a practical sense because, at short notice, I came up with a design for a banner that proved robust in the rain. I make it too. I also didn’t like the implication that because another possibly autistic person went, then I should be able to go as well. But mainly I think I was upset because my viewpoint wasn’t accepted and supported by my friends. I had felt that I had been honest but somehow that viewpoint was still wrong. I thought my friends would understand but it would appear they didn’t.

Now I am sure that some of that annoyance was based on my own sense of letting my wife down too. She had directly asked me to come to the rally with her and I had refused. In the past I would have pushed my anxieties into the background and gone anyway, but since my diagnosis I have felt it better to be honest if I can and mention my autism. I know this looks like I am being selfish and it can be tough to stomach for somebody that has known me for a long time but in a sense I am rebelling. I have spent at least four and a half decades pretending to be somebody else and now I have decided it is time to find the real me. But it isn’t just about finding myself, it is about putting myself first for once because I have to look after myself if I am to be any good, any use to anyone else.

I guess I am a lot more aware of the decisions I take and the cost they can have. I found the time constraints in making the banners very stressful and need to recover once my wife had left. Whilst out walking the dog, I saw a couple with four miniature dachshunds and decided that I would go over and say hello because I grew up with such dogs. I didn’t have a clue what I would say pass “hello” and “I grew up with these”, and to be honest the conversation was a bit stilted and quiet in places but you know, it was okay. I will go up to a stranger in the street who is starring at a map looking puzzled, and ask if I can help them. All these situations have a cost to me, but I choose to pay that price in order to have a better life.

Later in the cycle ride it occurred to me that simply stating, “I’m autistic” isn’t enough for most people because they don’t really understand what that means. I thought getting a diagnosis would improve my life because now I have a label that people could get their heads around but it seems the reality of the people I have spoken to, don’t get it. I thought they would because they are working professionals with thinking minds but I seem to be wrong. Am I so different? Do I think so differently? I wonder if it is the same as white people understanding why black people are so pissed off because blacks still face racism and prejudice every day?

Using autism as a label then doesn’t work. I need to use language that other people can understand. I need to translate what is going on in my body into words that so called neuro-typical people get. But you know what? That is going to cost me in terms of energy. I need to twist my mind into seeing things from a NT viewpoint and explain it in terms of sensory overload of noise and touch, putting myself in an unknown situation when I find comfort in the routine, and expending energy that at the moment I don’t feel I have to give. Sometimes I am not going to be in the mood, or have the energy, or find the right words. How about NTs looking up what autism means then getting to know my own special needs by asking me about it? How about meeting me in the middle? Perhaps then I might feel more able to say how I am rather than pretending to be somebody that doesn’t feel like me.

I don’t suppose you will ever see a group of people demonstrating for rights for autistic people, because the ones that really understand why probably wouldn’t want to do it if I am anything to go by.