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Also by Dr Luke Beardon

Autism in Adults

Autism in Childhood: For Parents and Carers of the Newly Diagnosed

Avoiding Anxiety in Autistic Children: A Guide for Autistic Wellbeing

Avoiding Anxiety in Autistic Adults: A Guide for Autistic Wellbeing

What Works for Autistic Children

Dr Luke Beardon

To Iain; you provided superb support as my Doctoral supervisor, and have subsequently supported me in ways too many to list here. Thank you for (at least trying) to keep me on track.

Acknowledgements

To my amazing students, who teach me so much.

To my amazing colleagues, who put up with me so much.

To my amazing family, who I love so much.

1

Introduction

‘Now, then – for those of you who don’t know me, my name is Luke …’ What??? ‘Now then …’ – is it now, or is it then – surely there can’t be a happy medium? One or the other, surely? And what do you mean, your name is Luke for those people who don’t know you – what is your name for the folk who do know you? Why is it different? And now that I’ve got to know you, which moniker do I use?

The above is a slightly provocative (and fictitious) example, but one which demonstrates how important the detail (in this case of language) can be in terms of the potential impact it might have on a person. If one is autistic and has a well-developed sense of detail, a logical and unambiguous way of understanding language, with a high degree of linguistic competency, one might be forgiven (or, importantly, should be forgiven) for responding in such a manner to the opening sentence. Indeed, perhaps it is the person who has uttered the nonsensical sentence who should be seeking forgiveness. And yet, time after time, it is the autistic person who is deemed at fault in such circumstances, told they are in the wrong – and, in this example, declared as being ‘impaired in communication’. When one strips back the example and views it through the autism lens – in other words understands it from the autistic perspective as opposed to the rather narrow view of only seeing things through a non-autistic perspective – it becomes clear that if such examples of miscommunication are rife, then it is no wonder that autistic people are so terribly and unfairly disadvantaged in life. And, of course, communication is but one of the plethora of areas that may cause such misunderstandings between the autistic population and the predominant neurotype (PNT). Added together, it becomes scary just how disadvantaged autistic people are, often daily, often long term, often to devastating effect.

My intention in writing this book is to highlight some of the areas of childhood that may add to that disadvantage, and propose alternatives to how society in its various differing factions might act, in order to redress the imbalance that currently exists. And make no mistake, there is a very real and hugely (negative) impactful imbalance for many, most, possibly all autistic children (adults too – but that’s the next book). The level of discrimination against autistic children is difficult to discern – but I suspect it would horrify most people to learn just how insidiously society treats autistic children. Part of that horror stems from the fact that this is not even usually intentional; let’s face it, most people are pretty much ok and don’t wake up each morning wilfully trying to make autistic lives worse. But if autistic children’s lives are being made worse by how society treats them and misunderstands them, then there is a duty of care to do something about it.

Terms

By the way, my name is Luke (now, then, and in the future, and to anyone whether they know me or not) – and when I write ‘I’, I am referring to myself. This seems rather obvious – but whereas I refer to myself, the ideas that stem from that place come from a much broader base than my own very simple brain. I am fortuitous in the extreme in that my life has long since been lived in an abundance of rich colour afforded to me by the hundreds (or thousands) of autistic people who have shared their lives with me in some way. Some of that has been directly, some indirectly. I read autistic accounts, be they formally published as books, or created as blogs; I watch vlogs; I have many autistic students as well as quite a variety of autistic connections outside of my ‘professional’ capacity. Not a day goes by that I don’t have some direct connection to autism; my job is to think about autism and share those thoughts to the best of my ability. Sincerely, any useful ideas that appear in this book are highly likely to have stemmed from the autistic voices that I have in my life, as opposed to any particular wisdom of mine; conversely, if there are terrible ideas then you can absolutely plant the blame at my figurative door.

This raises an important point – where does autism knowledge come from? Obviously, I can only speak for myself, but my experience tells me that one simply cannot beat direct contact with autistic people to learn from – and the more the merrier. Of course, I am also writing a book which aims to impart autism knowledge, which perhaps appears to be contradictory – however, if I am able to use my position of delightful privilege of having had so many autistic people in and out of my life over the years, then that is what I aim to do. I will refer to this later in the book, but engaging with the autistic population – while sounding like a no-brainer – really is of fundamental importance for the best way forward; and yet, time and time again I see practice that, deliberately or otherwise, ignores the ‘autistic voice’ or simply doesn’t appear to even seek it in the first instance. I’m not suggesting that it’s always simple – there are, after all, many conflicting and sometimes divisive autistic opinions on a range of subjects – but to wilfully ignore any input is a dangerous path to take.

I have mentioned society already – which in a sense is a rather loose term; I use it to mean the collective population that impacts autistic children in a general sense. I am not targeting any person or group of people specifically. When I use ‘we’ I am referring to society in general.

Similarly, if I refer to a specific population – for example teachers – I am absolutely not referring to any one person. If you are a teacher, for example, and I have made a general reference to teachers, do not feel that I am necessarily referring to you! This book will highlight what I believe to be poor practice, but just because there is poor practice in evidence does not mean that you personally are culpable of engaging with it. I will also be highlighting what I believe to be good practice – and if you find yourself agreeing and thinking that you already do that, then brilliant. There absolutely is some excellent practice within society; I am not denying that for one moment. However, I also feel that poor practice vastly outweighs good practice in most sectors (if not all) and this is something that needs an urgent redress.

So much of the autism narrative ‘others’ autistic children – they are the ones who are identified as different from the PNT; by definition, though, the PNT must be just as different from the autistic population. From this point on I will deliberately refer to PNT children when required; references to children will mean that those children are autistic.

I have mentioned the PNT – the predominant neurotype. This is a term I have used since 2008 when it was explained to me by an individual who wanted me to adopt it; I was impressed with his reasoning and did, indeed, adopt the term. Essentially, it refers to the numerical majority neurotype within a given population; it avoids the term ‘typical’ which for me is too close to ‘normal’ with its subsequent connotations of ‘abnormal’. Within the context of the book PNT will be used to refer to the neurotype that the majority of the population would align with, whilst acknowledging that by my own definition there are situations within which the PNT is actually autistic! Just to be clear – PNT within this book always relates to the neurotype that is most commonly found as a majority within society as a whole. Otherwise, within, for example, an autism-specific school the PNT would be autistic. Essentially, the PNT will refer to individuals who would not be considered neurodivergent.

However, neurodiversity is clearly a reality, and there are neurodivergent populations who would not be considered PNT but would also not invariably be autistic either. All autistic individuals are, by definition, neurodivergent, but not all neurodivergent children will be autistic. There may be all sorts of overlaps between neurodiverse populations in terms of experiences, and perhaps some of the suggestions later in the book might be useful to other neurodiverse individuals. Indeed, there are many convincing arguments to suggest that plenty of practice that suits children will also benefit the PNT children; it is unendingly frustrating to hear staff within education proclaim that what is being suggested as good autism practice would suit everyone – the fairly obvious response then being, ‘well – why aren’t you doing it then?’

There are times when I provide ‘the autistic voice’ in the form of narrative; each of these examples has a pseudonym. Some of these are real examples given by permission, others are fictitious.

What the book is for

Trigger warning: this book is based on the premise that currently we are getting it (in the main) wrong. I make no excuses in identifying just how wrong we are getting it because hopefully this can subsequently identify just how necessary change actually is. However, this may also be distressing to read. Ironically enough, it might also be distressing to read sections that aim to change practice; the identification of what I believe to be good practice may be triggering, as it highlights what is not currently standard practice.

When I suggest that we are currently getting it wrong I really do mean it. I feel that almost everything autism-related, from language use through to education and beyond, needs some level of investigation and potential shake-up if our aim is to improve autistic quality of life. Make no mistake – autistic children can be perfectly content and lead happy, healthy childhoods giving them a great chance of extending that position into adulthood. And yet my experience tells me that this is the exception rather than the norm. This has to change. Which is the purpose of this book. My hope is that by identifying some of the areas of practice that could be changed for the better, we can start to make progress and subsequently have a positive impact on autistic children. Conversely, if we don’t make changes, then we are in very real danger of continuing the risk of harm to autistic children that has severe consequences.

Take my opening quotation as an example; imagine that your brain has a very specific and precise way of understanding language, and on your first day of school your teacher comes out with that statement. The potential for harm is as follows from the autistic child’s lived experience:

Can I believe him?

Trust

Anxiety

Loss of focus

Teacher’s perspective

Exclusion.

First of all, my teacher has made what I can only describe as a bizarre statement about his name. He starts off with an oxymoron and continues with the indirect assertion that his name differs between populations of kids who know him and those who do not. This is confusing and not at all what I believe to be the case. I don’t for one moment believe that he is called anything but Luke, irrespective of whether one knows him or not. If I am right, and I usually am, then this guy is telling us something that is untrue; how do I now decide, from this point on, whether to believe what he says?

If I can’t believe everything he says, then how am I supposed to have any trust in him? Trust is important to me – being in an environment in which I don’t feel safe is extremely worrying to me, and elevates my anxiety to a degree that will become untenable unless someone does something about it. As my anxiety increases, it has a direct correlative impact on my ability to focus on what the teacher is saying and what is going on around me; I am losing the ability to follow instructions and getting more and more agitated as I ruminate on his words and try desperately to work out if I can trust this person of so-called responsibility. The more anxious I get, the more overwhelmed I become, and the greater my need is to go into fight or flight mode.

At this point the teacher is making all sorts of judgements based on my behaviour. It is clear to him that I am no longer following instructions and he is repeating his directive of ‘sit down’ over and over again – little does he understand that my brain is now at the point of no return and try as I might there is no way I can either understand his instruction or follow it.

Lastly, my attempts at survival mode which entail me trying my very best to escape from the classroom lead to my parents being called to come and collect me from school and my reputation as a trouble-maker begins. This reputation will follow me throughout my school years. As an adult I remain scarred by the trauma of that incident which subsequently dictated how I was treated thereafter in my formative school years.

One might argue that the above is spurious hyperbole – but the reality is that while it is an imaginary scenario, many adults will have similar stories to tell. And to reiterate – this is the outcome based on a single sentence uttered by someone who had no intention whatsoever to do any harm. What can be done about this, then? Well – this is what this book is all about. Having the knowledge of the impact we have on the children we care for is a pretty good starting point. In this particular instance, imagine how different life would be if the appropriate pre-education knowledge development had taken place, so that the teacher in question had a good understanding of the communication profile of the child. He might have been able to put any number of options in place to avoid distress; for example, he might simply have invoked a rule: ‘If I say anything that you find puzzling, ask me straight away to explain myself to you.’ If he then admitted that to some people his words could be confusing, accepted that words are indeed an area of great interest and linguistic interpretation was important, then a healthy and trusting relationship could blossom. Again – no hyperbole – such simple changes can dramatically influence entire childhoods, and beyond.

Repetition and apology

I am well aware that within the previous four books I have authored I have written about all sorts of autism-related material; if any of what I write in this book seems either repetitive or similar in nature to what I’ve previously authored, I apologize. Or do I? In a sense, the reason why themes crop up again are because they are so important, in which case perhaps no apology is required. On the other hand, if you feel that in reading this you’ve not gleaned anything that you couldn’t have gleaned from previous reads, then feel free to be annoyed, but please do accept my apology.

How the book will be written

I am positive that as soon as I complete the writing of the book there will be numerous components that I regret leaving out. Just as my students occasionally grumble that they have a word limit imposed on their assignment submissions, so I feel aggrieved that there is a word limit to this book. There is no way I can include everything that requires attention in the autism world in relation to children. What I have done, though, is identify some of what I regard to be key aspects that relate most obviously to autistic wellbeing – something that is desperately close to my heart. Far too infrequently do we refer to autistic wellbeing when, in fact, it should be at the forefront of every single aspect of life that influences the child. Literally everything that we do to support the child should have their wellbeing proactively taken into account; it should be the raison d’être of everything we do.

Throughout the book I will choose an element of practice (practice being used in a fairly loose way – meaning something that has the potential to influence, directly or indirectly, the wellbeing of the child) that I feel could do with improving. In the main I will go through a three-stage process for each component:

Identification of what is current practice

My view on why such practice might be problematic

What we could do to change that practice to work towards the concept of autopia.

Concept of autopia

Autopia is a neologism created to stand for ‘autistic utopia’, in other words an environment that is best suited to the autistic population. While More’s original island of Utopia is imaginary, autopia is something that I sincerely hope will become a reality at some stage in the future. This ‘What Works’ book is all about working towards an autopian future in which children can thrive and live happy, healthy lives alongside their PNT counterparts.

The (autistic) child

By ‘autistic child’ I mean just that – nothing less, nothing more. We know that there are all sorts of things within any child that could influence the outcome for him, her, or them. Being born blind, for example, will generate a different set of issues compared to being born with sight; being of an ethnic minority, having a learning disability, having diabetes – all of these are examples of how the child might need to be supported in ways that differ from other children. It would be impossible to go through an autopia for each of the various permutations that are possible, but the one consistent factor for the suggestions I make is autism.