Book of the Month July 2021 - The ESSENCE of Autism and Other Neurodevelopmental Conditions

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. 

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