If better, you can watch this on my YouTube channel.
I don’t think what I hear is what you think that you are saying. If that makes sense.
Autism and ADHD affect the ways in which we process information. But far more importantly they affect the ways in which we feel and see and hear the world differently.
I often write and talk about the perils of presuming to understand another person simply based on our own experience of things. Even on a global level this is never a good idea. Many of us who live with autistic and ADHD ways of feeling and hearing and seeing things, can’t really know how it is to not be like this. And often, for so many years before we recognise ourselves, we have no idea why we seem to experience so much so differently.
Dr Damien Milton, the autism academic who is famous for writing about ‘The Double Empathy Problem’, brought attention to the fact that it is not just us doing the not understanding. Whilst it is true that we know only our way of being, it is also true for everyone else.
His academic paper explains away the myth that we don’t have any empathy. Of course we do. In my experience often far too much. It is just that it arrives in different ways and in a different time frame. I will explainI love what Dr Milton has said and done for autism, but blimey this stuff is full of academic language and often difficult to understand. I try to make things just a little more accessible.
Dr Milton’s book A Mismatch of Salience is an in-depth exploration of Autism. He is an incredible person and academic. His words have changed understanding of neurodiversity over the years. But. They are a little bit complicated.
“Throughout its history, autism has been primarily defined in terms of a pathologized deviancy from normative cognitive functionality, despite protestations to contrary from autistic writers.”
In my books and blogs and videos I try to explain autism and ADHD from the inside out. In a way that it far less clever, but maybe a little more approachable.
I do worry that not enough gets through to where it is needed. There are people who don’t understand autism and ADHD at all and there are people who don’t recognise their own autism and ADHD. There are others who may say that they understand autism and ADHD but most of what they believe is still based on myths and stereotypes. Which are not helped by the media. For my Post Graduate Diploma in Autism Studies, I researched this and published my findings in my short book called Can Society Ever Be Autism friendly. Because I am not a very good academic, I think that it is easy to read.
As you may know if you’ve met me before, my brain doesn’t run along linear tracks. It doesn’t even stay in one time zone. It’s a kind of Tardis. It jumps around in time and space and often starts at the end and ends up at the start. If you’ve met me this description will make perfect sense. Ah yes, you will say, or probably just think. Neurotypicals do more of the think it but don’t say it I find. Whereas I do more of the oh dear I have already said it.
(Small explanation needed. Neurotypicals (NT) are people who do not have a neurological difference. They are neither autistic nor ADHD. Some academics and advocates do not like the word typical and ask that we say things like prominent neuro type (PNT). This is bewildering to me. We ask to be recognised for our difference. We ask for accommodations for our difference. And then, we demand that no one mentions words like different or typical. But that discussion is for another day.)
I talk a lot, and I do mean a lot, about how we can’t ever know what we don’t know. I didn’t know that I was autistic and ADHD, and I didn’t know that everything about me was being shaped and affected by both of these and more. The fact that there are so many myths, misconceptions and misunderstanding means that for far too many of us we live the wrong lives, not understanding why we feel different, and why we feel like we don’t really fit in. My greatest hope is that by talking about what it is really like to be autistic and ADHD, I might be able to dispel some of the stereotypes that create the stigma, which leaves so many people living isolated lives afraid to disclose their difference, or even totally unaware of what it is and why.
(I know that lots of people prefer to use auDHD and that is fab, but I like to say autism and ADHD).
I was inspired to write this after a conversation with some lovely friends. But I know that I have done the exact thing that they were commenting on. I have now gone on for far too long. Too long for a neurotypical it seems. When someone writes an essay as a comment I immediately know.
We need to make sure that nothing is left to chance. Everything needs to be said because there is so much to say. What you hear and see is only a fraction of what we have spiralling around. This is me trying to keep it brief. And although I do understand that you really don’t want to read or listen to ‘all’ of this. Please for just a moment, stop and try to imagine having ten times this amount in your mind all of the time. Some of it has to come out. Where else is it going to go?
Not being able to imagine what it is like for someone else is, we are told, a deficit of autism. Say what now? It is called Theory of Mind and apparently, we lack it. But when I ask you to imagine being me, can you? Can you really plunge into an autistic and ADHD of feeling and seeing and hearing the world differently? You probably don’t even believe half of the things that I am describing. If it isn’t happening to me, then it probably isn’t happening – a very neurotypical response.
So, this not being able to understand how another person is living and feeling and thinking. We are equal in that. Exactly what Dr Milton was describing in his Double Empathy Theory. We don’t understand you and you don’t understand us.
Except that even that isn’t true. Because we live in environments that feel hostile and because we encounter people with attitudes that we are confused by and probably scared of, we have had to study you in order to survive. Lots of us have made trying to fit in our special subject. We haven’t succeeded of course because we had no idea what we were up against. But we have watched you like the star in the film Stardust. Watched you live your lives in your weird and wonderful ways and tried to learn how to be you so that maybe one day you might say hello and let us join in. Or maybe that was just me in the playground?
So now finally you may be relieved to know that I have arrived at what was meant to be the main point. We are broadcasting on different frequencies. We need to do some fine tuning.
My friends described being confused by a child who they say goes on and on. The child says the same thing over and over they claimed. They had answered perfectly apparently so why was this child doing this they wondered. How could they help this child to stop doing this?
Stop? Stop being themselves? Was that what I heard? People have always told me that I should stop going on and on. And people have told me to stop saying the same thing over and over. I never realised until now that they weren’t hearing what I was saying. And if they haven’t been hearing what I have been saying, then how could I expect them to answer. But I did expect an answer, and I have felt overwhelming rejection without one.
What I hear and what I say and what I need does not seem to be what you are hearing and needing and saying. A translation guide is needed.
Well, you are in luck because I am here.
I asked my friends what their answer was. They said that they simply say yes, I have heard you. Yes, I know that you think or feel that. I was as shocked by this as I was the first time a kindly friend suggested that I might be autistic. Me? With my eye contact and humour and marvellous ability to socialise? I too believed the stereotypes!
So, if I say that I am worried that it will rain later, the response will simply be that my words have been heard. How is this useful to me, let alone kind? Obviously, you have heard them. I said them outload for that express reason. But if there is no answer, I will presume that you haven’t heard them and so naturally I will say them again. But it can’t be again for you because you clearly didn’t hear them. Because if you had heard them, then you would have responded. Surely? Because you care about me and because that would be the kind and caring thing to do. Clearly this miscommunication has affected me for over 50 years, and it never occurred to me to wonder why. Until now.
What did I expect you to say? Well, something. Not nothing. Saying that you have heard me and then proceeding to not say anything about the thing that you just admitted hearing is confusing and feels cruel. It feels that my words – which to me are me – are ignored and rejected. Which means that I must be doing something wrong or bad. Which I always presume because after 50 years of being misunderstood and rejected, I am going to presume.
I presume that you have heard me because you said that you had. And then, if no response comes, I have to find an answer for that. If I don’t know you very well then, I will presume that you don’t like me or that I must have said something to upset or anger you. I will then presume rejection and will run away. If I do know you very well, I will still presume that you are rejecting me because I have said something wrong, but I may well try to say it again just to check. And again, and again. Then I will rephrase it to help you out in case my question wasn’t clear.
And all of this creates fight or flight. Fight or flight are trauma responses and really ought to be avoided in relationships. If I then tell you this, you will be offended and feel criticised and probably ask why I am doing this. I never know what the ‘this’ is. In my life, I have come to presume that it means being me. And that being me must be wrong and bad.
I can fight with more questions trying to probe the reasons that you discarded me and my words. Or I can slink away in fright and cry alone somewhere once again asking myself what I did that was so wrong.
All of this. Yes, all of this because you didn’t talk to me about the rain. I was worrying about the rain and so I needed you to acknowledge hearing me by at least repeating the words. And then to validate my fears by telling me that it is understandable to be concerned about the rain. And then to look after my fears with some suggestions for ways to deal with the situation. And then to tell me your thoughts and fears about the rain so that I don’t feel so alone. I always thought that was perfectly clear.
(The line in my head now is one used by Santa Claus in A Miracle On 34th Street when he presumes that everyone understood that his buildings can only be seen in the dream world.) Maybe Santa has an autistic and ADHD brain. He does have lots of ideas and a wacky dress sense. I am just saying. We are everywhere when you know what to look for. But we also need you to hear us. Not hear sounds but to hear the meaning. To hear the pain and terror that silence brings. You will say that your response was not silence. But for me, there is no difference between there being the silence of no one who cares and the silence of your thoughts.
In silence there is only fear and dread and memories. Abandonment, rejection, trauma, abuse, neglect or just being totally misunderstood and misjudged. This is where I must go in the silence. It is all I have known, and my questions were an appeal to you to pull me out of the abyss where these live. The place that my mind sinks into as it spirals out of control with too many thoughts and fears to be contained within it.
And so even if some people do have a better Theory of Mind than others, could they imagine this? I hope not. I don’t wish others to feel and see and hear the world like me. But I would like someone to know that I do. And with that in mind, you might just talk to me about the rain sometime.
Please leave your thoughts or questions here or find me on my website.
http://feelingtheworlddifferently.co.uk
My short guide to autism and ADHD is published on Amazon at cost price.
Autism, ADHD and other friends. 
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