Autism ADHD and so much more.

My hope is that difference can be seen as equal; my dream is that neuro differences will be understood for what they really are, and for what they really are not.

Understanding difference might just be good for us all.

They say that you should never judge a book by its cover. I’m not really sure that that is true actually. Why shouldn’t you? The cover has been designed for exactly that reason. The colours, the image, the type of font, the choice to highlight either the author, or the title, or both. And surely you certainly should judge it by the blurb that is helpfully included somewhere on the cover. The short summary is an enticement to you, it is attempting to pique your interest and persuade you that this book is perfect for you. You then decide or ‘judge’ that you will make the purchase and read it.

So, with books I would say that it is fine to make a quick judgement based on a very short assessment. And anyway, even if you are wrong and miss the greatest story of all time, you will never know, and so both you and the book don’t need to worry about it.

But with people it is different. When it comes to people, I think that the quick appraisal method is really not appropriate. Obviously if a crazed terrorist wielding weapons stands before you, then it might be wise to judge based purely on what you see. But, even then, it would depend on whose side you were on. If it was your terrorist, then it wouldn’t be a terrorist at all. It would be your freedom fighter, whose appearance would terrify the enemy but would bring comfort and security to you.

If I looked different to you, you might hesitate before presuming, or judging, or deciding. You might ask questions because you were genuinely interested, or because you were just afraid of being accused of some sort of ism. If I were adorned in my country’s national dress, you might want to find out more. You would feel comfortable admitting that you knew nothing about my people and their customs. You wouldn’t feel bad about this because how could you. If I were the first person from my tribe that you had ever met, you would expect me to be different from you and this wouldn’t offend you, it might even intrigue you. You would enquire about my rituals and beliefs and would share yours with me. You might even want to try and accommodate some of mine so that I would feel more comfortable.

We are all different, aren’t we? Surely, we can start by agreeing on that? We know that diversity and difference are what make us great so why then don’t we all agree that we probably don’t know enough about autism. And that includes those of us that are living with it. So, again we can all agree to agree. How amazing is that? In the world of polarised opinions that we find ourselves, wouldn’t it be great if we could agree to agree, or even agree to disagree, but at least we agreed about it. If you see what I mean.

So, you might be thinking, well what difference would knowing more about autism, ADHD and the many other neuro differences, do for me? What’s the point? Why do I need to know about that? Another thing that I am supposed to care about. And you are kind of right. It won’t make any difference to your life. Well, it might, how do I know. But it probably won’t.

But do you and I want to live a life where nothing makes a difference? Really? Small acts of kindness make us feel good about ourselves. We get a warm fuzzy sense of pride when we reflect and say – look, I did that, I didn’t stand by, or look away, or procrastinate. So, if you don’t mind, please may I learn more about all of you and, if possible, could you try to understand a little more about me. How about you explain your wonderful brains to me and then let me explain mine. I am absolutely sure that on your street, on your bus, in your workplace or even in your family, there is someone with a brain like mine.

First clue is when someone is described by others as a weirdo. Interesting. Firstly, what does that mean. Does that mean just not like you? Oh, and please, please know and remember that my brain asks questions because it genuinely wants to know. No double meaning, no sarcasm, no rhetorical questions. Just a desire to learn. Maybe that is where we should start.

When I ask a question, it is simply that. I ask a question because I don’t understand something, and because I would like some help, support, and advice. I don’t ask questions because I am looking for sympathy, or because I am attention seeking. (I’d love to have some positive attention, but it is not what I am seeking with this question.) I don’t ask a question because I already know the answer and am trying to be sarcastic – that seems to be the speciality and the presumption of the non-autistic world – not mine. And, I can’t say this enough, it is not ever never, rhetorical. What would be the point of that? Seen that there. It was a question but even Windows Word tells me that the question mark shouldn’t be there. Even my laptop thinks that it must have been rhetorical!

My uncontrollable honesty would tell you if I already knew the answer, and it certainly wouldn’t ask you a question as a game or trick. The other advantage of this honesty is my naive desire to learn and to be better. If I have asked you a question, it is because I want to know, and learn, and be the best I can be for you and for me. This means that I expect honesty in return and will never be offended by it unless it is intentionally cruel or untrue. It is also a compliment.  I have entrusted you with my thoughts and feelings and cares and concerns. I presume that you will look after them, like them, and respond with some thoughts and feelings and cares and concerns of your own. I thought that it was this simple. In over 50 years of wondering what went wrong, I never figured out that neurotypical brains (NT’s) don’t necessarily say what they mean or mean what they say. Wrong guidebook. That’s why a translation guide would be most welcome.

If I meet you at the bus stop or on a train, I will probably comment on something funny, or interesting, or even weird that is happening around us. I have thoughts and questions whizzing and whirling, and I will be hoping that you enjoy hearing them and will want to join in with your own thoughts and questions. Until diagnosis it never occurred to me that you wouldn’t want to. I am never selfish. I will ask you lots of questions about you. And I genuinely want to hear and understand your answers. I love learning about people, their lives, their opinions, and their problems. I will listen without prejudice or judgement. I will empathise and sympathise and offer what I presume will be welcome suggestions and problem-solving advice.

Until diagnosis and my subsequent reading and learning, it never occurred to me that you wouldn’t want this, and that apparently it is often totally unwelcome, unexpected, and is one of the reasons that I will be rejected. Even worse than this, is the fact that my research into my autism diagnosis has suggested that the ‘normal’ NTs will run away, but that the more abusive variety may smell a perfect victim and stick around. What a crazy, contorted, totally ridiculous way to live. Someone is genuinely nice and kind and caring and interested in you, and they are the weirdo? How did this happen? Why is this even a thing?

I realise now that I have encountered many users, abusers, and narcissists. With disappointment and regret I can now understand so many of the friends that turned out not to be, and the family members that were there for the taking but left like everyone else when I wanted a little bit of giving to come back to me. There is definitely a link between autism, abuse and Complex Post Traumatic Stress.  I think that we need to talk about that.

I know that this will sound arrogant, but I can’t really understand what is actually wrong or bad about me. For over 50 years I thought that I was confident and capable and that my friendly, interested, exuberance would be welcomed and wanted. I blamed myself every time it wasn’t and tried to be a better person who might finally be worthy of a friend who would see me for who I am, and would like me, and stand by me, no matter who I am, or what I do, or say.

Now that I have read about all of the rules and games that are apparently innate for the majority neurotype, I am trying so hard to predict what they will hear and see and feel. If I am me, then it doesn’t work, and if I try really hard to not be me, to follow their rules and play their games, then I am left even more exhausted, lonely, and confused. I have written lots about the need for translation across the communities and I really think, and believe, and hope that if I could do this, it might just help. Maybe it is too late for me. I can’t go back 50 years and start again. But if writing and talking about this helps just one little girl to live her next fifty years without the pain and rejection, and without the confusion and chaos, then this will be worth it.

During a recent training day which focussed on the presentation of autism in girls and women, Tony Attwood discussed what he calls ‘the Italian traffic lights.’ Just as Italian drivers often seem to fail to recognise the red light, so autistic girls and women often don’t see the signals to stop. I have been thinking about this and can’t really decide which way to see it. Should autistic girls and women be pressurised to stop just because it is expected, or more acceptable to do so? Or should neurotypicals learn to expect, encourage, and embrace more? I think that part of the problem is translation. And when I say problem, I simply mean the reason that so often there seems to be a misunderstanding or miscommunication. The result of which leaves the autistic girls confused, bewildered, and often hurt and rejected. I know that I can only speak for me and so I will. But in my reading and research I have found that there are many similar traits of behaviour and thought patterns along with mental and physical symptoms which to some extent we do all seem to share.

I presumed that everyone was the same, more, or less. I presumed that I was just a little bit more confident and capable and that my drama classes were helping me with my amazing ability to talk to anyone, everywhere about everything. To find out, at age fifty, that there are rules about this is unbelievable. Why did no-one tell me this?

I think that neurotypicals are trying to make things better. I really think that the words are well meant. Not helpful, but well intended. It seems that they feel comfortable ,and in fact comforted, if they think that lots of people have similar issues and that in knowing this, it sort of makes everything less painful and easier to bear. They are in the majority and most people they have met will have been the same, so the presumption is understandable. The insult and issue is that we want them to understand that it isn’t the same for us, and in many cases we are desperate to be accepted and understood for who we really are, and what we really feel and see and hear and need and want.

I would prefer you to validate my difference, rather than trying to be kind and inclusive, because it feels unkind, invalidating and excluding.

In order to start making society more friendly to neuro differences I have created The Sensory Experiences Project. If you’d like to contribute a piece to our collection of stories then please join our group or just contact me. The project aims to include voices that are often hidden and unheard across communities living in environments that feel hostile to their needs. I want a collection of our voices; our way. Not just the successful authors and advocates. So if you know anyone that might join or help then please do take a look at my three recent blogs which have links to me and the project. Thank you. Tracy