Preface and Acknowledgements
This book is intended mostly for undergraduate and post-graduate students studying psychology, or related subjects. Our primary goal has been to provide a comprehensive and critical overview of the available psychological theories of autism, and to enable students to understand something about this fascinating way of being. The text acts as an introduction to a range of concepts, which can be explored further, and we signpost recommended reading, flagging work by autistic writers wherever possible. The book is enhanced by the inclusion of beautiful sketch-note summaries by Marisa Montaldi at the start of every chapter, which illustrate and highlight the key content presented.
A note on language
The language used to describe autism is currently the subject of intense and passionate debate. Our primary goals in this work have been to:
· Use language that is respectful to people on the autism spectrum and to those who support them.
· Recognise the very real challenges experienced by autistic people and their families, without portraying autism as a problem to be fixed.
· Ensure that the language we use recognises autism as a lifespan condition experienced by people of all genders and ages, from all walks of life and all around the globe.
For this reason we have not used any functioning labels in the text, and minimised any use of medical and deficit-focused terminology. However, we have included some person-first language (e.g. person with autism), although we know this will not be the preference of many autistic people. Our reasons for doing so include the fact that, historically, person-first language was part of the early disability rights agenda — this was not a language construction imposed by the neurotypical/non-disabled community. Gernsbacher1recently pointed out that language can be stigmatising when different constructions are used to describe people with and without a disability — as in the phrase “typically developing children and children with autism” — and we have tried to avoid this throughout by using matched constructions as far as possible.
1Gernsbacher, M. A. (2017). Editorial Perspective: The use of person-first language in scholarly writing may accentuate stigma. Journal of Child Psychology and Psychiatry, 58(7), 859—861.
An oft-cited online survey2 shows that about 60% of autistic respondents approved the use of the identity-first construction “autistic” to communicate about autism, and just under 40% endorsed “autistic person” specifically. Thus identity-first language receives strong support in the community, and many have written eloquently about the importance of this kind of language for their well-being and identity.3 We have no desire to over-ride this wide-spread and well-articulated preference, and the majority of language here is identity first. However, in the same survey, more than 30% of the autistic group surveyed approved the use of the person-first phrase “has autism” to communicate about autism. Moreover, about 25% of respondents on the autism spectrum selected either “has autism/Asperger’s syndrome” or “person with autism/Asperger’s syndrome” when asked to pick only one preferred language option. It is very clear from the data that, even within an autistic group, there is diversity in opinion, and we have chosen to reflect that diversity in our choice of language in this book. To readers of the future, we can only apologise if this choice seems to have been retrograde.
2Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442—462.
We would like to thank ten members of the autistic community for providing insightful and fascinating reflections to each chapter, and for giving feedback on the content and tone of the book. They are as follows:
Community contribution: Marisa Montaldi — user experience designer, illustrator and autist
It has been an indescribable privilege to illustrate the concepts and messages in this book, and I hope this work has done them some measure of justice. I’d like to note that I am neither an academic nor, despite being autistic, am I in touch with the latest research — so had it not been for this work, my understanding of my own condition would have easily continued to be decades out of date.
I received my diagnosis at age 13, in 2002, and like for many autists, my school life mostly comprised an environment and teachers lacking faith in my ability or prospects, and I had little reason to think otherwise. It wasn’t until, with open-minded family, I was given the option to leave school and pursue my own education in whatever form it took that I began to see more. I eventually chose to continue studying, on my own, and self-taught my GCSEs.
Fast-forwarding to after post-graduate study, I now work in software, designing user experiences: a discipline requiring empathy, imagination, a marriage of holistic and detailed perspective and an unbiased approach to human behaviour and data — traits that deeply resonate with me but contradicted the consensus on autism. My journey here forced my understanding of my own condition to evolve, as well as how “broken” I should consider myself to be. Now witnessing a similar evolution reflected in the research is both astounding and painfully validating.
Most striking to me are the psychological theories around information processing in Chapter 8. There’s this one account of a boy ’mistaking’ a pillow in a model bed for a piece of ravioli. I can see how that might appear charmingly peculiar from some perspectives, yet there’s little evidence suggesting he is confused at all. He might simply be thinking in a different order, and I suspect we may be surprised by how large an effect that simple difference can have.
This world we share is beautifully complex (the social universe especially), and we humans often leverage assumptions and bias in order to navigate, infer and interpret it effectively. What if this boy is simply assuming less and noticing more? Observed by someone who assumes more and notices less, he may well appear confused or even deficient. But to perceive something so impartially might just mean growing up in a world that makes that little bit less sense and learning to revel in it with open arms. It may only be a slightly different way of being, but in situations more significant than ravioli bedding, it is easy to imagine how that can create large ripples in everyday lives.
For me, being diagnosed was an unstated, seismic reassurance that I was indeed different, but that it is OK and that I’m not alone. And I wouldn’t change it for a second.
Living diagnosed, however, is different. Being labelled with a ’deficiency in understanding’ that is both poorly understood and, by definition, disqualifies you from understanding your deficiency, can gradually undermine your confidence in your own perception and reality (and therefore an entire population’s). Yet it may not be until reading a book like this that the realisation confronts you. Witnessing research grow more towards what I’ve sensed to be true, but felt too “diagnosed” to argue for, is both retroactively heartbreaking and dramatically empowering.
I can’t certify whether I’m the way I am because I can and therefore choose to be, or because I can’t be any other way. But I do enjoy this way. And likewise, does the neurotypical mind choose to be its way, or can it not be anything else?
My first thank you has to go to Franky for not just allowing me to help her update her masterful 1994 text, but for giving me the benefit of her experience, knowledge, hard work and support during the process. The original book is a beautiful piece of writing that shaped my thinking about autism as a student, and it was a delight to be able to draw on that framework and style for this new text. It’s been a huge honour to have this opportunity to work with Franky, who has had a tremendous impact on the field and richly deserves her exceptional reputation. She’s also very good at correcting “which” to “that” whenever I get it wrong (frequently).
I must also thank some key people for getting me to the place where I feel like writing a book is something I can do — Sue Leekam and Helen McConachie shaped my identity as a psychologist and continue to provide me with sage advice and regular ego boosts. My colleagues at University of Edinburgh and beyond have been patient while I spent days ignoring their emails in an effort to write: thank you Catherine, Rachael, Lorna, Maggi, Bérengére, Shereen, Sinéad, Bethan, Mihaela and Ruth; thank you to all the endless Andrews; thank you to my DivComp collaborators (so FET) and the Shaping Autism Research team. Thank you also to Greta Todorova, Andrew McKechanie, Andy Stanfield and Jon Spiers, as well as three anonymous reviewers, for reading and giving helpful comments on a first draft.
I’d never have kept my head above water over the past year without the love and support of my friends: KCO, Robin, Fi, Duncan, Rebecca and the Wyatt girls — special mention to Ed for providing writing soundtracks. Thank you a million times over to my family — Mum and Dad, you gave me every advantage in life; Minny and Hedda, you inspire me; Ben, your intelligence, patience and generosity know no bounds.
Finally, thank you to the hundreds of autistic people — friends and tweeters, colleagues and advisers — who have challenged and inspired me. Kabie, this book, and all my work, would be vastly inferior without you. Damian, you’re a true pioneer and an inspiration. Working in this field is endlessly fascinating and a great privilege.
When Sue approached me about the idea of writing a new version of my very old book, I was delighted. Over the years, I have refused a few suggestions from publishers that I should write an updated edition, but the idea of writing a new version with Sue at the helm was instantly appealing. I knew she was a researcher of enormous energy, insight and warmth, but the process of writing together has shown me what an amazing person and scientist she is! So my first thanks go to her, for her hard work, endless positivity, patience and humour!
As I write, it is coming up to 30 years since I started my PhD, and I can’t help but reflect on how tremendously lucky I was, so many years ago, to be accepted as a student by Uta Frith at the Medical Research Council’s Cognitive Development Unit. Uta has been the best mentor, colleague and friend anyone could have, and I am enormously grateful for her wisdom, support and kindness over almost 30 years. I also owe a great debt to Neil O’Connor and Ati Hermelin, Uta’s own PhD supervisors, who gave me my first experience of autism as a volunteer research assistant one university vacation. I am very proud to consider myself amongst their academic grandchildren! I have also benefitted from the generosity and wisdom of many other great autism researchers including the much-missed Lorna Wing and Sula Wolff, both of whom kindly gave me time and advice when I was setting out as a PhD student, and Marian Sigman who was so encouraging to me when a post-doc. More recently, I am lucky to have as my office neighbour the indomitable Michael Rutter, still working very hard at 85. My many wonderful colleagues at the Social, Genetic and Developmental Psychiatry Centre and the Institute of Psychiatry, Psychology and Neuroscience make my job an absolute pleasure.
Over the last 30 years, I have been very fortunate to collaborate with and supervise many brilliant scientists at the early stages of their now- illustrious careers, including Rhonda Booth, Essi Viding, Rebecca Charlton, Greg Wallace, Liz O’Nions, Eva Loth, Coralie Chevallier, Catherine Molesworth, Pam Heaton, Geli Ronald, Dave Williams, Naomi Fisher, Fran Davies, Eamon McCrory, Janice Rigby, Kim Murray, Tori Hallett, Yulia Kovas, Alice Jones, Pedro Vital, Fiona McEwen, Claire Harworth, Steph Lietz, Antonia San José Cáceres, Anna Cattrell, Beata Tick, Vicky Brunsdon, Nic Shakeshaft, Esra Yarar, Bosiljka Milosavljevic, Vinnie Carter Leno, Sophie Sowden, Lucy Livingston, Hannah Pickard, Debbie Spain and many more. Emma Colvert, who has led our autism twin study for more than a decade, and the many research assistants (notably Vicky Milner), placement students (notably Simone Capp) and project students on that team, deserve special mention. I have learnt more than I can say from all these lovely people, and I am grateful for their inspiration and friendship.
Autistic friends, scientists and self-advocates have, of course, taught me a huge amount, and I would like to thank in particular Ros Blackburn, Richard Exley, Dinah Murray, Wenn Lawson and James Cusack. Autism family members, especially the late Robin Murphy, and Saskia and Michael Baron, have also been fundamental to my discovering how little I really know about autism.
Friends (autistic and not) and family have supported me, put up with my ’narrow special interest’ in autism, encouraged me and made possible the difficult juggling act of work and family life. The fathomless kindness of my parents, which I appreciate even more as a parent myself, and their huge help with our three children, has been fundamental to my ability to pursue a career I love. Finally, and most importantly, I must thank Daniel for more than 25 years of love and friendship (and counting), and our children Poppy, Joe and Sam, who are such delightful, surprising, enchanting and impressive people. Pushka, our cat, does not get thanked, as she mainly walked over the keyboard as I attempted to write. AMDG.