For some time, I had been trying to find a book I needed for my patients with Autism Spectrum Disorder (ASD) which I hadn’t been able to find. I had been looking for a book to help parents to explain to their child what their ASD diagnosis meant and to encourage an exploration of the child's strengths and difficulties, a book that was tailor-made for the child with Autism.
I had witnessed again and again in my clinical practice that when I diagnosed a child with ASD, parents often felt - understandably - overwhelmed and uncertain about how to communicate the diagnosis to their child and that sometimes these feelings meant that the diagnosis was not communicated well to the child or even not communicated at all (I have many “horror stories” of patients finding out about their diagnosis in horrible ways, such as reading “Autism” next to their names in a classroom list left unattended by a teacher).
I had found many good books explaining the diagnosis to their parents, their teachers, their siblings, their classmates, but I could not find a good book for children with Autism! I asked Jessica Kingsley Publishers to help me to find such a book (Jessica Kingsley Publishers is a multi-award-winning independent publisher which publishes books in the field of mental health with special attention to autism). To cut a long story short, they offered me a contract to write the book myself!
My Autism Book: A Child’s Guide to their Autistic Spectrum Diagnosis became a reality in December 2013. It has become a best-seller, selling worldwide, and this little book has made me feel incredibly useful as a doctor.
I have received cards, testimonies and even presents from grateful readers telling me such wonderful things, on the line of children saying that the book has helped them to understand themselves, to like themselves; also parents, grandparents, teachers, even a godmother, thanking me for the book and telling me that they were using the book as a platform to explore the very personal characteristics of their child with Autism (in the book the child can tick the characteristics that apply to you, defining what autism means for you).
This beautifully illustrated guide helps young people with Pathological Demand Avoidance (PDA) to understand their diagnosis, develop self-awareness and implement their own personalised problem-solving strategies.
Written in consultation with young people with PDA and their families, this book recognises the importance of handing control back to the young person, and that there is no one-size-fits-all PDA profile. Readers are encouraged to engage throughout with interactive writing, doodling, and checklist exercises to explore their own particular characteristics, strengths and challenges.
Me and My PDA is sensitively tailored to the needs and experiences of young people (aged 7+) with PDA. The guide is designed to grow with the reader and can be used for many years as the young person develops and changes - making it invaluable to PDA-diagnosed individuals and their families.
Foreword by Professor Roland Littlewood
Since 2006, I have been interested in the study of sadness, its conceptualisation and help-seeking behaviours. Within these vast topics, there were two areas that intrigued me the most: the role that culture and religion played, and the factors underpinning whether sadness was considered within normality or whether it was thought to be pathological.
I am a practising psychiatrist, so these areas of research fascinated me not only academically but also as a clinician whose work posed challenging questions with regard to the way depression was diagnosed and treated in mainstream psychiatry. This book is the result of my journey in search of answers to those questions.
Think of it as a sort of a diary of my travels, a witness to my experiences and to the lessons I learned along the way. Although it involved a fair amount of travelling and visits to many different places, the encounters were of a human kind; thus, the transformative nature of my journey.
This book is based on the research project I carried out for my PhD (University College London). Building on the literature in this area as well as on my previous research, I set up a study to further explore the conceptualisation of deep sadness and consequent help-seeking behaviour using several qualitative methods to gather data amongst 57 practising Catholics in different parts of Spain.
Amongst the religious resources that my participants may have used, I wanted to pay special attention to get an accurate account of the role that the clergy plays in assisting those afflicted by normal and abnormal sadness. I included four groups of people on different religious pathways: lay theological students, priests, and contemplative nuns and monks.
In order to explain more fully the variation and complexity of their understanding of severe sadness, coping mechanisms and help-seeking behaviour, I decided to investigate these topics from more than one standpoint: I employed semi-structured interviews, participant observation and ethnography to gather data. I also wanted to provide rich anthropological data on the participants and their contexts so as to portray their ways of life and contextualise the findings of the study.
In contrast with the decontextualized diagnostic criteria for depressive disorder, I decided to start from the micro-level of fieldwork and interviews, aiming to understand in depth the individual and the small-group processes involved in normal and abnormal sadness.
At the same time, however, the diversity of the sample was chosen in an attempt to reach conclusions that could be useful for the macro-level. I wanted this work to contribute to building a person-centred psychiatric practice: the book concludes by advancing a conceptual framework to distinguish pathological from normal deep sadness.
Being able to hear the participants’ stories outside the constraints of my clinic felt liberating, allowing me to be reflective and curious in new ways, and somehow in the field, my thoughts became clearer. Listening to people’s sadness in the context of my fieldwork and in my hectic psychiatric practice are such different experiences.
The many hours I spent listening and living amongst the participants - as well as the many hours that once back home I devoted to listen to the tapes and to read and to analyse the transcripts and field notes - made apparent, that the participants clearly differentiated between sadness in response to a cause, sadness that ‘made sense’, and cases where sadness was not explained by the context, sadness that ‘did not make sense’.
The former was seen as a normal reaction to adversity which should be resolved by the individuals' social, cultural and religious resources, while the latter was likely to be conceptualised as pathological, e.g. depression, warranting psychiatric consultation.
I also found that religion played a crucial role in the way sadness was understood and resolved: symptoms that otherwise might have been described as evidence of a depressive episode were often understood in those more religiously committed within the framework of the Dark Night of the Soul narrative, an active transformation of emotional distress into a process of self-reflection, attribution of religious meaning and spiritual growth. A complex portrayal of the role of the spiritual director and the parish priest in helping those undergoing sadness and depression emerged, containing positive aspects and criticisms of some priests’ lack of commitment and mental health training.
The narratives and arguments presented here emphasise the importance of considering the context of depressive symptoms, as the absence of an appropriate context is seemingly what made participants conceptualise them as abnormal. They also warn about the risks of medicalising normal episodes of sadness, raising questions about the lack of validity of the current decontextualized diagnostic classification for depressive disorder outside of mental health experts.