Preface

Ever since I decided to embark upon this literary venture, it has both amused and astonished me to discover how I have continually fallen prisoner to the very subject matter I endeavour to convey. Pathological Demand Avoidance Syndrome (PDA) is a behaviour profile within the autism spectrum first proposed in the 1980s by Elizabeth Newson, a UK child psychologist, after analysing a group of children who exhibited traits that were similar but at the same time different from typical autism. By definition, it is the compulsive resistance of the demands of everyday life, and up until about half a paragraph ago, this quirky condition that I supposedly embody felt as though it was going to be a fixed and insurmountable monolith that would block my path, tower over me and ultimately deter me from even starting, let alone finishing, this book.

It’s interesting because I seldom need to bring up my diagnosis anymore. I virtually never think about it unless I either make a YouTube video, if someone asks or if the topic of autism is dropped into conversation (which, come to think of it, has been happening more and more since starting my YouTube channel). This is due to the fact my life is now more or less together, and, as I’ll go on to explain in chapters to come, whether PDA or autism are gifts or disabilities is, to some extent, contingent on the environment in which those with the conditions are situated. Because over the years I have gradually drifted towards the right life for me, or, as I’d rather put it, gravitated towards my natural habitat, I have found that the drawbacks of all my diagnoses – many of which I’ve utilised – have beset me less and less; but here I am, thrust right back into the heart of the world of PDA ready to do my bit for all of those parents and children currently undergoing the same throes as I did once long ago.

I find it ironic that I am writing about a condition, or – to make brisk and reluctant use of that word’s cringe-worthy and lacerating linguistic subordinate – ‘label’, that does admittedly capture many aspects of my personality with impeccable precision, yet is still something I have writhed away from since the very day I was diagnosed with it. But it is a part of my nature, and I’m sure the nature of many others with whom I share this diagnosis, to stave off labels as they can be divisive and demeaning. One person with PDA may relate to the label as it can provide a sense of identity, whereas others will perceive it as society attempting to pigeonhole them and impose a restriction on their individual liberty. I, for one, fall into alignment with the latter; however, as someone with three diagnoses, I do remember how relieving it was for me, my parents and my teachers when our tireless efforts to find out what the heck was ‘wrong’ with me suddenly yielded a clear explanation. I am happy to concede that labels are sometimes useful and necessary.

Yet another difficulty that lies ahead of me is how I am expected to be somewhat compliant and cooperative, and because of this my instinct is to now (and please don’t take this the wrong way) befuddle and toy with you, dear reader. It’s not that I don’t like talking about this topic – I do, quite a lot as you will find out. And neither is it that I am averse to a solemn discussion; on the contrary! It’s not even out of rudeness. It is, like I said before, the fact that this project, however noble it may seem, has now itself become a bit of a demand! And as with any situation where I am asked to do something, I am inclined to politely say, for example, ‘F*** off and write yourself, book!’ Yes, indeed, expectations can be demands too; even those that are unspoken as they linger in the air like germs.

If I were to look for just one word to sum up PDA, the words ‘irrational’ and ‘paradoxical’ simultaneously spring to mind and jostle to the front to be picked. Well that’s not entirely true as there is another ‘word’ of sorts. I’d personally employ the nonsensical, glossolalic gibberish that goes through my mind whenever I am asked by others to explain PDA in a nutshell, which is quite a task I must say, but this is not something that can be transcribed easily as it really is just an incoherent splurge of sounds. I suppose if I had to give it a go it would sound something like: ‘BLOGUMSPLERGH’. I assure you there’s nothing to decipher here, and there’s no profound revelation. It really is just a testament to how frustratingly impossible it is to sum up in a few sentences how a brain like mine really works. Luckily for you, my darling reader, I have decided to write a nice juicy book about it.

Sometimes I feel it would be more convenient if, instead of taking time to sit down and write a book, I were to install a camera in my flat. Especially a few moments before I started writing, as it would’ve really captured PDA in action as I feverishly paced around the room, picked things up, got lost in thought, and did pretty much anything to avoid writing. This may come across as though I don’t want to write? But that couldn’t be further from the truth, as I wanted nothing more than to start typing away, and this is what can be hard for ‘neurotypical’ people to grasp. I have written, binned, rewritten, and binned this book again more times than I can possibly remember for various reasons, but here I go again for hopefully the final time!

I sometimes wonder if ‘Pathological Procrastinating’ may be a more befitting name, or perhaps ‘Pathologically Free-Spirited’, or even ‘Pathological Curiosity’. After all, it is of utmost importance to know ‘why’. ‘Don’t play with fire!’ may seem like a reasonable injunction. If someone were to give me such an order as a child, I’d ask ‘Why?’ And if they gave me a valid and informative answer then that might’ve worked as a deterrent. But if they were to say, ‘Because I said so,’ then it would reinforce my curiosity and there’d be a chance I’d be rushed to A&E a few minutes afterwards.

If I were to encapsulate what it feels like to be autistic, then the short answer would be, surprisingly, ‘normal’. This is just the way I am. I am not broken; I do not require any improvements. A longer answer would be: when I am around human beings, I feel like an alien, or a different species. They do things that I cannot get my head around, and vice versa. When I feel forced to live in the real world and do as the humans do, I resent who I am. When I am around my kind and doing things that make sense to me then I understand how being this way is a gift, and I wouldn’t give it up for the world.

I appear to be in the flow now so I will spare you the pontificating, as there is plenty more to come! But just to round this intro off, PDA can be deeply mysterious, and sometimes the explanations to some of its more obscure and puzzling aspects can be hidden from even its host. It can lead us to do terrible things, it can make us impulsive; but at the same time it can – more often than people realise – be a good thing. Acts of charm, selflessness and courage can also be attributed to its fickle and unpredictable nature, and numerous other endearing and philanthropic qualities can also be derived from its very essence. Also, autism has nothing to do with a person’s upbringing. Some autistic people I know are among the politest and most pleasant people I’ve met. Our autism has a neurological basis and should be treated as such, and some of our more quirky or forthright behaviours shouldn’t be perceived as ‘bad manners’ for which our parents are to blame.

Now, I am not a medical professional, and I can only really talk for myself, but since I have firsthand experience of autism, I feel I am qualified to some degree to talk about it; especially from a first-person perspective. It is not my aim to glorify or justify my own misbehaviour, and I ought to point out that if I do come across as self-pitying – or, worse, a spoilt brat – at any point then I assure you it’s not intentional. I simply intend to demystify PDA and autism and dispel a few myths. So, without further ado, I will try my best, with panache, grace and clarity to provide you with a subjective report of what it’s like to be a highly sensitive, high-functioning autistic millennial in a confusing modern world.