The ESSENCE of Autism and Other Neurodevelopmental Conditions.  Rethinking Co-Morbidities, Assessment, and Intervention by Christopher Gillberg (2021)
Published by Jessica Kingsley.
 
Physically, this is a small book, a mere 141 pages which can be read quickly.  Yet, despite its size, the information contained within is of HUGE importance.  Its huge because the ESSENCE approach challenges how health systems are currently organised for children, and how professionals understand, identify and support children who present with varying conditions and/or challenges. 


So, what is ESSENCE?  Professor Gillberg outlines that ESSENCE stands for Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations.  ESSENCE refers to a group of neurodevelopmental disorders, which includes the commonly known Autism and ADHD and other lesser-known conditions such as Avoidant Restrictive Food Intake Disorder (ARFID) and Speech & Language Disorders, amongst others.  In short, ESSENCE focuses on children who are showing symptoms and concerns with some aspect of their development, such as social interaction, communication, attention, behaviour, mood, sleep and feeding etc.  ESSENCE reminds us that diagnosis is complicated and can be misleading.  Children can show different symptoms and concerns at different times, and these can have different implications at different times.  For example, symptoms of one diagnosis or the other could easily be identified at the beginning of a child’s life but then a different diagnosis could become more salient later on, when the child is older.  For example, a 4-year-old could be deemed to primarily have autism, only to then grow older and better fit the criteria for ADHD.  A key point from the book is that children may fit different diagnostic boxes at different times in their development.  Children keep growing and changing, which means that assessment/diagnosis needs to be dynamic rather than fixed at any particular point in time.  As Gillberg writes, ‘Making a single definitive diagnosis in early childhood is always wrong’.

Gillberg sets out the lifetime prognosis of ESSENCE, examining the common co-occurrence between conditions and the symptoms they present.  He presents these conditions in a coherent context, using a holistic approach, rather than the usual isolated approach where conditions are assessed for in isolation.  It is common to see health services organised so that there is a pathway or clinic that assesses for ‘autism’, or ‘ADHD’ or ‘attachment difficulties’.   Gillberg shows that these separate single-issue approaches do not fit the evidence which tells us that it is more common for conditions to co-occur.  For example, if a child is autistic, they are more likely to also have ADHD.  

Gillberg sets out what is known about the two diagnosable attachment disorders: Reactive Attachment Disorder (RAD) and Disinhibited Social Engagement Disorder (DSED).  Of note, to those of us working with care experienced, fostered and adopted children, is Gillberg’s point that ‘virtually all children with RAD/DSED have symptoms of other ESSENCE problems, sometimes even to the point of meeting diagnostic criteria for conditions such as speech and language disorder, autism, and/or ADHD’.  Gillberg recommends that a child who presents with RAD/DSED symptoms always needs comprehensive neuropsychiatric examination and evaluation.  This fits with my clinical experience that we need to take a broad lens when assessing and understanding children with complex backgrounds and presentations.  Child development is key.  A narrow focus on only trauma and/or attachment runs the risk of missing important neurodevelopmental issues. 

Gillberg suggests that a diagnostic process should not just say whether a child fits a specific diagnosis but instead impart a comprehensive description of the child’s difficulties and strengths.  This then forms the basis for support, interventions and treatment.  Also, good assessment and diagnostic processes need a joined-up and long-term approach which utilises the expertise of different professionals. 
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I believe that the ESSENCE approach is much-needed when understanding and supporting adopted, fostered, and other children who are living in complicated circumstances.  ESSENCE is crucial for everyone who has a stake in truly understanding what children need to grow and thrive and identify support that will make a difference.  ESSENCE knowledge is necessary for social workers, health professionals, teachers, therapists and so on.  This book is a crucial read (and a quick one!) for people who commission and organise health services for children, and, it could be argued, adults too.  As Gillberg succinctly writes, ‘ESSENCE must be considered a public health problem given that it affects at least 1 in 10 families.’
 
Review by:
Dr Helen Rodwell, Consultant Clinical Psychologist
Co-author of: Parenting with Theraplay; An Introduction to Autism for Adoptive and Foster Families; CoramBaaf Good Practice Guide on Supporting the Mental Health of Looked After and Adopted Children. 

Beyond Behaviors: Using Brain Science and Compassion to Understand and Solve Children's Behavioral Challenges by Mona Delahooke PhD

If you are a parent, teacher, mental health professional or find yourself working with any children who struggle with behaviour at home, in school or in the wider community then go buy this book NOW…. It makes so much sense?

Looking after a child with trauma and anxiety, who is neurodiverse or autistic, or who has received any diagnosis which include symptoms of challenging behaviors (RAD, ODD, PDA, DMDD, PTSD, DTD, IED, ADHD, etc.) is highly complex and often demanding. It is impossible however, to have the positive influence we would all wish for without a good understanding of the causes.

Child Psychologist, Dr. Mona Delahooke has put into words so clearly and brilliantly what needs to be known about the most challenging kids in our communities and classrooms. In a compelling, compassionate, and easy-to-read format, she has addressed many of the false assumptions that underpin out-dated behaviour management systems. More importantly she proposes a refreshingly compassionate and brain-based approach. Instead of following the traditional path of rewards and consequences to try to motivate children to behave, she focuses on the importance of building an environment of safety, respecting individual diversity, and understanding children’s sensory and nervous systems. Her emphasis on the importance of relationship in a world where discipline has been interpreted as punishment rather than "to teach" is a key message for all of us.

With plenty of scholarly research, along with helpful examples and informative diagrams, her book clearly and beautifully demonstrates the importance of figuring out the root causes of the behaviour as the prerequisite to finding compassionate solutions that work!

This book Is also important because it addresses both sides of the relationship equation (adult/parent and child) and offers effective tools, worksheets and strategies to help meet and understand the complex, and at times overwhelming, emotional needs/behaviours of children.

For so many of children, reward/punishment/consequences/privilege systems for managing behaviour challenges simply DON’T WORK. So often, kids with trauma, chronic stress, and neurological differences who behave in non-compliant ways are presumed to be manipulative, defiant, and in need of more discipline. What’s missing in these children’s lives is NOT “accountability” or “consequences”— most of these kids have been punished more harshly and consistently than most of us can imagine.  What they need most is human connection! Warm, attuned, positive relationships with adults who accept them the way they are. Dr Delahooke has compelling neuroscientific evidence to back this up. Behaviourally challenged kids generally have an overactive stress response system which keeps their brains from developing in line with their peers. They aren’t unmotivated or unwilling to behave better; they simply can’t.

What will help?
According to Dr Delahooke, providing an environment that supports the child in coping with stress and attaining a state of calm security. No one can learn or acquire new skills when they are in a constant state of fear, anxiety, tiredness and/or stress.

Dr. Delahooke has done an amazing job of explaining complex material in a very readable way. This book raises vital issues for the way we treat children in our nurseries, pre schools, child care settings, after school clubs and programs, and in many homes throughout our communities. When we focus only on observable behaviours and labels, we miss the most important thing - that all children have rich inner lives that need to be valued and understood.

This book needs to be in the hands of every parent, teacher, therapist, pediatrician, and other professionals who attribute negative behaviour to matters of poor character and manipulation rather than as a way to communicate needs. The worksheets are clear and applicable for both therapeutic and caregiver interactions. This book has the potential to transform many readers' perspectives which would be the best possible news for all children.
 
Kevin Denvir
Freelance parent mentor and behaviour coach at Kevin Denvir Consultancy and Training.
www.calmerfamily.com