Can people ever care about things that don’t affect them?

If I wander out into the street now and ask a random selection of people what they think the term neurodiversity means, they will firstly panic because they are afraid of saying the wrong thing and then, they will try to say the right thing. But who decided this wrong and right? Would it be better if we took away this atmosphere of fear of unknown rules and expectations that if broken, could literally wreck lives? Might we then be able to discuss and learn with open attitudes and enquiring minds?  

I love the Scout Mindset theory as proposed by Julia Galef. A person should look around at the situation and establish the facts based on the reality. And they do this instead of immediately jumping into some sort of attack or defence position, which she calls the Soldier Mindset. The world in which I live does seem to have become strewn with soldiers who are fighting battles in places that there aren’t any. The essay by Janis on Groupthink started to explore what might happen if groups of people started to believe only their group’s ideas and attitudes to be right, and anyone else to be the enemy and as such, worthy of attack. Given that this is now a constant threat for all of us it is hardly any wonder that people are either afraid to speak at all, or will only say what they think they should instead of what they really think.  

And if we push people into hiding, are we not doing the exact thing that ignorance about autism has done to us? Aren’t we making them mask and pretend in a desperate attempt to fit in and not be seen for who they really are and what they really feel and think? Exactly what we are asking them to understand about us.  

If I ask what neurodiversity might mean, then most people will say that it refers to people who are different. Brave individuals might say that it is people who are not ‘normal’ and then they will hear their own word and start to fumble and backtrack and get tied in knots from which they cannot free themselves.

The neurodiversity movement, which is now fighting amongst itself, wanted the term to refer to everyone. Great idea. So it should. We all have individual neurology, and we are all different. But they failed to recognise, as so many people I have met still fail to recognise, that this was their ideal, and their desire and nobody had asked the neurotypicals what they thought about it. Neurotypicals or NTs are people who are not neurodifferent and are not autistic. Even this term evokes controversy and strong feeling which again fails to ask them. Lots of autistic people don’t like the reference to something that is typical because they say it makes us sound not typical. Which I would argue, is definitely the case, and is something I am proud to admit and show. But they don’t like being singled out as different from the norm. And then they campaign for different rights and extra accommodations on the basis that their needs are different from the norm. Am I risking cancellation in saying this? Well probably, but how is anything going to improve for us if we stop dialogue that could help us before it starts.  

The Oxford English dictionary states that neurodiversity is anyone who experiences life differently to the majority or norm. Leading autism activists have told me that the dictionary is wrong. Wrong it may well be, but just erasing things that don’t agree with our predetermined ending is not going to get us anywhere. They think that we are weirdos who don’t fit in, and they are looking for reasons to confirm that.

Added to this, neurotypicals don’t like being told off or told what to do. We are much more about the facts and exchange of information, but we are never going to get that understood until we start explaining to them in language that they understand and are willing to listen to. And what that is I have absolutely no idea. I thought that I did. I wrote translation guides and books and blogs and thought that I would change the way that autism was understood. But they don’t read them. They don’t know that they exist in the same way that they don’t really know that we exist. People care about things that affect them because lots of things affect them. It is exactly why we are desperate to be seen and heard for who we really are without the myths and misunderstanding and misconceptions. But we are always preaching to the converted. A person in the street who really understands autism will inevitably already be involved in some way.  

So, what does autism mean? I dare you to ask yourself and anyone around you right now. Go over to someone and ask them if they could explain what autism is. Tell them that you are not the thought police, and they can say anything without fear of a jail term. I promise that unless already invested for personal and professional reasons, what you hear will demonstrate that autism is really not understood at all. And, even when already involved, many professionals perpetrate some of the worst myths and misunderstanding and then act offended when we try to correct them. A whole different piece I feel.  

A group of us spread out across the globe have been collecting our stories. We have been listening to each other and learning about the amazing ways we all feel and see and hear the world differently. Lots of overlap and similarities, and even more that we all resonate with. Of course, we are all different but many of our experiences are the same despite being geographically disparate. It has been comforting to find a place to belong with people who understand, even if what we are sharing are stories of lives lived in pain and difficulty faced with misunderstanding and fear.  

And so here I return to where I started. If you knew anything about autism, you would have already known that the thoughts don’t run in straight lines and quite often I can see the end before the start. I might warn you of unforeseen consequences and potential problems. This never goes down well, and I have to sit back and wait until a point in the future when everyone realises that I saw the end before we started. And probably, even if I was right, they will be annoyed by that because it somehow offends them when someone knows something. Something else that I would like to discuss with neurotypical folk please.  

I would like us to start a translation guide. We would love to explain autism so that it might be understood for what it really is, and most definitely for what it really isn’t. It would be amazing if we could ask non autistic people about their experiences and then be allowed to share ours. How else will anything ever really change?

There are plenty of specialists and academics who do this already but many of them have no lived experience, and those that do tend to use such long words in complicated sentences that only other academics and researchers ever read it. Added to which most research stays behind a pay wall so is totally inaccessible anyway.

In an interview for The Daily Express I explained all of this and more. The journalist wrote that autism was like being irritated. She later apologised and recognised that I did not use that word. But I realised that despite all of my words, she had to translate into something that she, and the majority of her readers would understand. Well meant, but unfortunately and inadvertently, just another way in which autism is pushed aside by the needs of the neurotypical majority. If our stories could be heard, in our voices, across the world, then maybe there is a chance that society could one day become more friendly to autism.