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Growing up with Neurodivergent siblings - podcast from AUTISM CENTRAL episode 6

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Growing up with Neurodivergent siblings - podcast from AUTISM CENTRAL episode 6

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His sleep is frequently disrupted because his brother Arlo needs help at night.

NEW RESOURCES - Sibs Talk Lite

Sibs Talk Lite is a new set of FREE resources for primary and secondary schools to support siblings who are growing up with a brother or sister who is disabled, has special educational needs (SEND) or a serious long-term health condition.

Sibs Christmas cards now on sale!

Buy a pack of our beautifully designed Christmas cards and help support our work with siblings of disabled people.

NEW - Sibling group leader training, 2nd February 2024

Do you want to run group support for young siblings? This online session will give you all the information you need to plan, set up, run and evaluate your own local group

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Sibs is the UK charity for people who grow up with a disabled brother or sister.

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Autism is a non-linear spectrum (image by Autism_sketches)

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Handout for Parents_ Explaining Autism to Kids

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Understanding myself - young people's views

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Understanding myself - young people's views

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NAS_Know Yourself Series_A Guide to Understanding Yourself

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Why Autism is a Difference, not a Deficit

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Good for upper primary up to adult - lots of the young people we have worked with like reading this website and the visuals it offers. They also say it's helpful to share with peers and family, to help them be understood more.

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Good for upper primary up to adult - lots of the young people we have worked with like reading this website and the visuals it offers. They also say it's helpful to share with peers and family, to help them be understood more.

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Focuses on autistic voice and strengths. Very visual and often uses dyslexia friendly font. Has a companion guide to help parents/carers or staff supporting feel confident in the delivery of the workbook.

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Focuses on autistic voice and strengths. Very visual and often uses dyslexia friendly font. Has a companion guide to help parents/carers or staff supporting feel confident in the delivery of the workbook.

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Autism, Identity and Me: A Practical Workbook and Professional Guide to Empower Autistic Children and Young People Aged 10+

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This empowering workbook and guide will help children and young people to develop a positive understanding of their autistic identity, whilst providing key adults with the tools needed to support their journey and initiate important conversations. The workbook is highly structured and visual, broken down into key sections such as Interests and Focus, Masking, Emotions and My Autistic Identity Statement to create a personal passport and to develop a deeper understanding of what autism means to t

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More explanation and review of the Duffus workbook

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More explanation and review of the Duffus workbook

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Dr Glòria Durà-Vilà

MD, RCPsych, MSc, PhD

duravila@doctors.org.uk

I am a senior consultant child and adolescent psychiatrist and the medical lead for Autism Spectrum Disorder in the Surrey and Borders NHS Trust. I have a main clinical interest in Autism Spectrum Disorders, including PDA, and I am the author of 'My Autism Book: A Child's Guide to their Autism Spectrum Diagnosis'.

I am an Honorary Lecturer at University College London, Department of Mental Health Sciences and was previously clinical lecturer at Imperial College London. My research interests in the field of cultural psychiatry and medical anthropology include culture, religion and mental health, the medicalisation of sadness and idioms of distress. My new book 'Sadness, Depression and the Dark Night of the Soul. Transcending the Medicalisation of Sadness' has recently been published.

I was born in Spain but London has been my home since 2003.

My Books

My two published books, 'My Autism Book. A Child's Guide to their Autistic Spectrum Diagnosis' and 'Sadness, Depression and the Dark Night of the Soul. Transcending the Medicalisation of Sadness', are very different. They are a reflection of my clinical and academic passions. It feels that it kind of defines me professionally.

Let me tell you about the two facets of my professional live: my clinical one, being a consultant child psychiatrist with a special interest in autism, and my academic one, doing research in cultural psychiatry. I am very passionate about both: I couldn't possible give up any of them, I see them as complementary: the researcher makes me a better doctor, and the doctor asks the questions for the researcher to answer.

'My Autism Book. A Child's Guide to their Autistic Spectrum Diagnosis'

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 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 children 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 way such as by 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 the children with autism! I asked Jessica Kingsley Publishers to help me to find such book (Jessica Kingsley Publishers is a multi-award-winning Independent Publishers which publishes books in the field of mental health with a special attention to autism). To cut the 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. Over 6,000 copies sold worldwide, 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).

If you want to read more about the importance of talking to your child about their diagnosis see my interview at NHS CHOICES:

Interview with Dr Gloria Dura-Vila:

http://www.nhs.uk/Livewell/Autism/Pages/talking-to-your-child-about-their-autism.aspx

'Sadness, Depression and the Dark Night of the Soul. Transcending the Medicalisation of Sadness. Foreword by Professor Roland Littlewood'

After writing the book, now come the fun bits, where I can enjoy talking about it, meeting people and promoting what, for me, is a very personal and important project. The official launch recently took place on the 12th June at the Institute of Advanced Studies, University College London. Professor Gerard Leavey, Professor Roland Littlewood, Professor Kate Loewenthal and Mr Ben Bano talked about the book. It was a fantastic evening attended by a very varied audience: people with a keen interest in culture, spirituality and mental health, medical and mental health professionals, and academics from a very broad range of disciplines such as medical anthropology, cultural psychiatry, sociology and theology.

I gave a lot of me to the book so I hope you find the book useful, from a personal or professional perspective, or indeed both, and that you enjoy reading it as I thoroughly enjoyed doing the research contained in the book!

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 - at times terribly uncomfortable and uneasy - questions with regard to the way depression was diagnosed and treated in mainstream psychiatry. Questions inevitably lead to a process of searching, and searching often involves journeys. This book is the result of one of those journeys in search of answers. I would like you to 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 decontextualised 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, along the lines of 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 taking into account 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 decontextualised diagnostic classification for depressive disorder to people who are not mental health experts.

Dr Glòria Durà-Vilà (duravila@doctors.org.uk)

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The Amazing Autistic Brain Cards: 150 Cards with Strengths and Challenges for Positive Autism Discussions

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Buy The Amazing Autistic Brain Cards: 150 Cards with Strengths and Challenges for Positive Autism Discussions by Durà-Vilà, Glòria, Tatternorth, Rebecca (ISBN: 9781787754300) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.

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Louise Gooding (Author), Ruth Burrows (Illustrator)

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Wonderfully Wired Brains: An Introduction to the World of Neurodiversity

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Buy Wonderfully Wired Brains: An Introduction to the World of Neurodiversity by Gooding, Louise, Burrows, Ruth (ISBN: 9780241568163) from Amazon’s Book Store. Everyday low prices and free delivery on eligible orders.

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Being Autistic (And What That Actually Means)

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Buy Being Autistic (And What That Actually Means) Illustrated by Garvey, Niamh (ISBN: 9781805011712) from Amazon’s Book Store. Everyday low prices and free delivery on eligible orders.

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Watch this if you think autism is bad ('Good To Be Me' music video)

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Joe Wells on getting an autism diagnosis

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Search YouTube with 'Julia - Sesame Street' ... 

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Search YouTube with 'Julia - Sesame Street' ... 

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Julia and her Sesame Street friends show kids that we’re all a little different but share the same joy of play and friendship. #SeeAmazing

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Neurodiversity class readers and autistic protagonists

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Neurodiversity class readers and autistic protagonists

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Great workbook for students to personalise and keep for life

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Great workbook for students to personalise and keep for life

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Autism...What Does It Mean To Me?: A Workbook Explaining Self Awareness and Life Lessons to the Child or Youth With High Functioning Autism or Asperger's

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Buy Autism...What Does It Mean To Me?: A Workbook Explaining Self Awareness and Life Lessons to the Child or Youth With High Functioning Autism or Asperger's 2 by Catherine Faherty (ISBN: 9781935274919) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.

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Why Words Matter: the new AET Terminology Guide

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Why Words Matter: the new AET Terminology Guide

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Introduction | The Neurodivergent Teens Podcast

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NAS_Know Yourself Series_A Guide to Energy Accounting

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Exploring identity (contains references to cute guinea pigs)

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Exploring identity (contains references to cute guinea pigs)

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NAS_Know Yourself Series_A Guide to Exploring your identity_20240918

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NAS_Know Yourself Series_A Guide to Setting yourself up for success_20240917

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Know Yourself - Series 5: Understanding Other People

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NAS Know Yourself Series 5 - Understanding Others

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NAS Know Yourself Series 6a - One-page profile

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Know Yourself - Series 6: Moving Forward

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NAS Know Yourself Series 6 - Moving Forward

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Great for explaining the functions of the brain, taking away shame from the young person and creating distance between themselves and dysregulated behaviours

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Great for explaining the functions of the brain, taking away shame from the young person and creating distance between themselves and dysregulated behaviours

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Buy My Hidden Chimp by Peters, Prof Steve (ISBN: 9781785120435) from Amazon’s Book Store. Everyday low prices and free delivery on eligible orders.

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Luke Beardon established the golden equation... AUTISM + ENVIRONMENT = OUTCOME

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Luke Beardon established the golden equation... AUTISM + ENVIRONMENT = OUTCOME

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What Works for Autistic Children : Beardon, Luke: Amazon.co.uk: Books

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Leanne Maskell (Author), Dr Becky Quicke (Author)

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Living with autism and ADHD is like being a misunderstood unicorn - creative, innovative, yet often struggling to fit in. Embrace your differences and thrive.

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I'm an inventor/entrepreneur, and in 2022, I was diagnosed Autistic/ADHD . My story is typical of an undiagnosed, unsupported neurodivergent person; bullying, unemployment, suicide, addiction, homelessness & trauma. It has taken 41 years to finally be myself.

We are different & in fact these differences have changed the world. [Just ask Newton, Einstein, Edison, Turing, Darwin, Jobs, Grandin, Christie, Curie, Mozart, Monroe, Ali, Elvis ]

Enough with the stigma, the shame, the myths, the exclusion & stereotypes! We need the truth, to hear the facts & spotlight the strengths & skills to break the cycle.

In January 2024, we launched The Hidden 20%, a media-led charity dedicated to raising awareness & support for the 1.6 Billion neurodivergents .

The response has been overwhelming, powerful, and galvanising . We've seen firsthand the impact of our work and the profound need for continued advocacy and support. My story & so many others' can be avoided.

Join us to help rewrite the future for people who think differently .

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I'm an inventor/entrepreneur, and in 2022, I was diagnosed Autistic/ADHD . My story is typical of an undiagnosed, unsupported neurodivergent person; bullying, unemployment, suicide, addiction, homelessness & trauma. It has taken 41 years to finally be myself. We are different & in fact these differences have changed the world.

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How to be You: Say Goodbye to Should, Would and Could So That You Can

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Buy How to be You: Say Goodbye to Should, Would and Could So That You Can by Middleton, Ellie (ISBN: 9780241710371) from Amazon’s Book Store. Everyday low prices and free delivery on eligible orders.

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Amazing Kids - Autistic Spectrum Condition (Better audio levels)

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Why everything you know about autism is wrong | Jac den Houting | TEDxMacquarieUniversity

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Different, Not Less: A Neurodivergent’s Guide to Embracing Your True Self and Finding Your Happily Ever After

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Buy Different, Not Less: A Neurodivergent’s Guide to Embracing Your True Self and Finding Your Happily Ever After by Chloe Hayden (ISBN: 9781761500169) from Amazon’s Book Store. Everyday low prices and free delivery on eligible orders.

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I absolutely adore this book! Any young person (who is or thinks they are PDA) reading it will learn so much about PDA, about themselves and about life, in such a way that they will want to keep picking it up. I couldn't put it down I enjoyed it that much. It's informative, supportive, practical and so encouraging. But it's also fun too and it doesn't make any demands of its reader either. It's an invaluable book in this era where there are so many pressures and demands on teenagers like never before; Laura gives sound and sensible advice in a very careful and thoughtful manner that totally respects the reader's autonomy and authenticity.
Eliza's illustrations are just perfect, evocative and they really help to sensitively communicate the issues tackled, some of which are tricky issues for young people. Together Laura and Eliza have created something so very special and I highly recommend every parent of a PDA teenager buy this book.

-- Viv Dawes, autistic advocate

This guide has truly been a guiding light, providing invaluable support in my role as an emotional mentor. Navigating the intricate world of Pathological Demand Avoidance is no easy task, but this guide offers practical insights and strategies that make a world of difference. From deciphering triggers to fostering effective communication, A Teenager's Guide to Pathological Demand Avoidance" is a must-have for anyone seeking to better understand and empower teenagers with PDA -- Reece Archibald, mentor at MindJam

How fantastic to have a neurodiversity-affirming resource to send PDAer teens to!
Written in a voice which very obviously understands PDA and treads that difficult line of being accessible and teen-friendly without being patronising or unintentionally demanding.
In other words, the best of both worlds. There will surely be some "That's me!" moments when reading this book.

-- Cathy Wassell, CEO Autistic Girls Network charity and author of Nurturing Your Autistic Young Person

From the first moment I picked up this book, I couldn't put it down!
I am 16 years old, and autistic (with a need for autonomy and self directed learning), and everything in this book made so much sense. The book was super relatable and I especially loved the fact that Laura and Eliza used quotes of other teenagers, slotting them in in a continuous and flowing manner. The book is written in a very friendly and conversational way, which demonstrates how great an understanding they have of autistic children (especially with PDA), and our needs. I also appreciate the illustrations, which evoke an emotion, and tell a story as well!
I highly recommend this book, both for teenagers either newly diagnosed with PDA and looking to learn more, or teenagers who would just like affirmation and reassurance that they are not alone. I also feel that this book would greatly benefit parents as well, since it would give them a stronger understanding of what their child is going through.

-- Sam, from Avid Beats

This book creates opportunities for young people to learn more about themselves and feel like they are not alone in how they think. I myself can relate to many of the stories told by the individuals who were reviewed within this book. -- Chloe, from Chloejustme

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Buy The Teen's Guide to PDA Illustrated by Kerbey, Laura, Fricker, Eliza (ISBN: 9781805011835) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.

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Association for Child and Adolescent Mental Health

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Special Educational Needs to Label or Not to Label? That is the question.

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Just brilliant to share with parents and carers especially 

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Just brilliant to share with parents and carers especially 

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The Middletown Centre for Autism Podcast

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Education Podcast · Twice monthly · The Middletown Podcast features interviews with leading thinkers and practitioners across the autistic and autism community. Conversations are autism-affirming and neurodiversity-informed with a focus...

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Questions + Plan for neurodivergent identity exploration

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A fantastically validating book for young neurodivergent children highlighting a little about sensory overwhelm and tools and approaches to help. Celebrates difference rather than focussing on deficit.

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Tania Wieclaw (Author), Rahul Chakraborty (Illustrator)

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When My Brain Is Messy: 1 (Nurturing Neurodivergence Series)

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When My Brain Is Messy: 1 (Nurturing Neurodivergence Series) : Wieclaw, Tania, Chakraborty, Rahul: Amazon.co.uk: Books

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Amazing Me, Amazing You - from autism ambassador, Christine McGuinness

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Amazing Me, Amazing You - from autism ambassador, Christine McGuinness

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Christine McGuinness (Author), Hannah Jayne Lewin (Illustrator)

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Amazing Me, Amazing You - from autism ambassador, Christine McGuinness

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Amazing Me, Amazing You - from autism ambassador, Christine McGuinness : McGuinness, Christine, Lewin, Hannah Jayne: Amazon.co.uk: Books

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The Secret Life of Rose covers a range of topics that are central to the autistic experience. While Rose writes peer-to-peer, her mum Jodie adds the perspective of an adult who is also a professional in the field. The end result is a book that opens up the autistic experience in a way that is both fresh and accessible.

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Jodie Clarke (Author), Rose Smitten (Author), Luke Beardon (Foreword) & 0 more

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brains and phone operating systems by More Than One Neurotype

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Siblings of autistic children and teenagers: experiences, relationships and support

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Strengthen relationships between autistic children and siblings by making special time for siblings, finding ways for siblings to have fun, and being fair.