Autism ADHD and so much more.

Autism stories from around the world.

My research for my Post Grad Diploma in Autism Studies with the National Autistic Society sadly highlighted that we are not really seen and heard. And when we are, it is often not in the way that we want, and need, it to be.

The fact that we are expected to have a social media profile in order to be credible means that so many voices are unheard and too many stories are not being told. My hope is that we can change that; my dream is that we challenge the stereotypes and dismantle the myths, the misconceptions and all of the misunderstanding.

I am not a philosopher or academic or psychologist. I am just me.  

There are lots of books about humans. Some are written by philosophers, some by anthropologists and many by psychologists and academic researchers. These books all look at humans from the outside in. Like a doctor with a stethoscope who hears something unusual and then tries to figure out what it might be based only on the knowledge they already have.   

I don’t want to do that. The authors of these books have already done it and are far better trained to examine humanity from an evolutionary perspective than I am. In fact, the total opposite is true of me. I don’t understand humanity at all, and this book is intended to be my ponderings and wonderings about why that is. I know that I am different and have always felt that I didn’t fit in, but never understood why. I presumed that I just wasn’t trying hard enough and so I set about trying harder and harder to be what I thought was needed and wanted in every situation.   

If you have ever felt like you don’t fit in or if you have ever felt that you were experiencing life in a different way to those around you, then this short guide might help you to recognise yourself. At the very least it might let you know that you are not alone in your quest to find out who you are and why.   

Possibly it is not for yourself that you are seeking answers and explanations. Possibly someone you know or care about is difficult to understand and you are trying to recognise why. The one thing that all of the philosophers and anthropologists and psychologists seem to agree on is that humans like to find answers and explanations. Sometimes they place this above reason or facts. In a desperate attempt to fit in lots of humans adapt their behaviour and thoughts and values so that they fit in with the group in which they belong. Doing this apparently comes naturally to them. They form a sort of tribe and feel happy knowing that they belong. Because this tribe has shared values and rules of engagement they will not take kindly to deviation. Difference is seen as dissent and the perpetrator must be exiled.   

At least that is how life feels for me. Exploring why this happens I will leave to the specialists. Explaining how this affects people like me is something that I would like to do here. Because it is not just me. There are lots of people who feel and see and hear the world differently and they get up every day hoping to find a place to belong and to be part of a society that understands and accepts them. Is that too much to ask?  

Clouds around the world.   

In recent months I have tried to speak to others whose life experiences have been shaped by neurological differences. I have heard stories about autism, ADHD, complex post-traumatic stress disorder, dyspraxia, alexithymia and many more. We are not defined by just one condition or difference, but often by many overlapping ones, and for most of us this has made recognising the cause of our differences incredibly difficult. We have been floating the world looking and learning and wondering why we never seem to fit in.

We look and sound the same, at first glance at least, but something is different. Some clouds withdraw and float away and some try harder and harder not to let the rain drops fall in the hope that they will be accepted. Most of us just want to be understood and seen and heard for who we really are even though we most certainly are different. Most of us have been masking to try and fit in, and for many it takes years or decades before we realise and recognise that we are autistic.

And then? When we know? Well, we want to tell someone. We want to share this life changing revelation. A celebrity would be interviewed, and everyone would nod supportively. The audience might whisper that they always thought this person to be a bit different. Comedians and actors who are ADHD may well be famous for exactly the skills that their neurological differences bring. But for those of us who are ordinary people living ordinary lives we look around us and take a breath. If autism is not understood and I tell people that I am autistic, well, what then? Probably they won’t understand. Possibly they won’t want to know. Or worse than anything else, they will say that they do understand when in fact they really don’t at all.   

Nothing about us without us.   

When the idea of neurodiversity was first created, groups were formed to advocate for better understanding and better rights for autistic people. The slogan was nothing about us without us. Like many minority groups or disadvantaged groups or disabled groups, the battle cry was created so that people could make their own decisions based on their own needs. My experience in business, in education and in life makes me think that this still isn’t happening. Training courses, awareness seminars and educational statements are all created from the outside in and far too often based on the ways that nonautistic people experience the world. Even well-meaning teachers, parents, healthcare professionals and HR departments create systems and strategies that they imagine will help but in fact invalidate the autistic experience and may even inadvertently discriminate.   

I believe that we need more that nothing about us without us. I believe that we need them to understand us in order for anything to change. Not the surface nod to diversity that we have now, but real understanding that will only come when the courses, the seminars and the voices are ours. From the inside out.   

And if it is just me that speaks well then it would be easy to think that I am just one person and I can’t represent others, so there is no need to listen or care. But if there are hundreds of voices from across the world does that make a difference? Could that make the difference that we are all seeking and hoping might be out there? And not just the voices and stories of actors, academics, authors, and authoritative figures. They have their place, but their experience will understandably be different to the ordinary voices with extraordinary stories.   

A choir that can’t sing. The fear of being seen and heard.   

I have collected stories and heard voices of people trying to live and survive as autistic while surrounded by myths, misconceptions and misunderstanding about autism and other neurological differences. These amazing people have taught me to value myself and to be more honest about difficulties and even to admit to disabilities. They are the most honest, kind, caring and supportive people I have even met. If you met them, you would never again be able to cling to a stereotype about autism and lack of empathy, or lack of communication, or inability to interact with humour and humility. They speak openly and honestly about the myriad of ways that they feel, and see, and hear the world differently. But the saddest, most heart-breaking thing is, that many are scared to tell others because they are scared that they, like my lonely rain cloud, will be rejected and sent away.