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The essence of ESSENCE -- definition, prevalence, outcome and intervention

This edition of the Researcher’s Corner is dedicated to the concept of ESSENCE. We discuss the background to the concept as well as its implications with Professor Christopher Gillberg, who has coined the term.

For those of us not familiar with the ESSENCE concept, could you tell us about it and what it entails?

ESSENCE stands for Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations and it refers to early manifested symptoms leading to concern and “specialist” consultation before age 3-5. ESSENCE is an umbrella term that refers to the whole group of neurodevelopmental/neuropsychiatric disorders that present with impairing symptoms in early childhood and includes ADHD, ASD, DCD, IDD, SLI, Tourette syndrome, early onset bipolar disorder, behaviour phenotype syndromes, and a variety of neurological and seizure disorders presenting with major behavioural/cognitive problems at an early age. Among the symptoms or markers of developmental disorder/ESSENCE are problems with general development, motor coordination/perception-sensory, communication/language, activity/impulsivity, attention, social interaction/reciprocity, behaviour including insistence on sameness, tics, and OCD, mood swings/emotional dysregulation and problems related to sleep and/or feeding.

The ESSENCE concept highlights the overlap of problems encountered in the field of child neuropsychiatry between syndromes that are usually conceptualised as discrete disorders. In reality these disorders share genes, environmental risk factors and clinical symptoms. ESSENCE is not a diagnosis in itself. Instead it represents a response to the current trend towards compartmentalising syndromes in child and adolescent psychiatry and developmental medicine to the extent that ASD and ADHD for instance are considered ‘‘boxes’’ that are exclusive and separable from each other. Co-existence of disorders and sharing of symptoms across disorders (so called comorbidity) is the rule rather than the exception in child psychiatry and the ESSENCE approach represents an attempt to acknowledge this in practice.

How did the ESSENCE concept come about? Can you give us some background?

“When I started out almost 40 years ago doing clinical work and research I was working in a Child Health Centre (following children from zero to seven years of age) and a neonatal ward as well as in a Child and Adolescent Psychiatry clinic. Thereby I had the opportunity to study different stages in the development of children and adolescents. In the Child and Adolescent Psychiatry clinic I saw a lot of teenagers with problems that at that time had not yet been given a name. The only patients with a named diagnosis were those with autism. I got interested in this area. I also had a number of boys referred to me with Anorexia and I thought they reminded me of the boys with autism that I saw at the clinic. Around this time we initiated a large population study with 5000 children, parents and preschool teachers. It was the first study to look at the prevalence of ADHD with a broader approach. From the very beginning we had a broad outlook when looking at ‘what is normal?’ We found that children with attention deficit and hyperactivity were very likely to also have difficulties regarding motor skills, perceptual difficulties (DCD), oppositional defiant disorder (OD), language impairment and autistic traits. This is the very foundation of what I have come to call ESSENCE. When looking back at previous studies and clinical experience, overlapping and co-existence of many problems is clearly the rule. There is almost never one problem only.”

How many people are affected by ESSENCE?

“At least 10% of children under the age of 18 are or have been affected by ‘neuropsychiatric/neurodevelopmental disorders’ including ADHD, ASD, TS, CD, DCD and IDD. Thus it is clearly a public health problem.”

Why is an ESSENCE approach important and how does it differ from the existing approach/practice?

“Adopting an ESSENCE approach would contribute to early detection and early, individually tailored interventions. So many of these children will be referred to and seen by health visitors, nurses, social workers, education specialists, paediatricians, GPs, speech and language therapists, child neurologists, child psychiatrists, psychologists, neurophysiologists, dentists, clinical geneticists, occupational therapists and physiotherapists. In the vast majority of cases however they will be seen only by one of these specialists, when they would have needed the input of several types of experts. This means that they are seen and assessed only from one angle. And then what you are looking for is the only thing that you will see. If you are an expert on Tourette syndrome you will see the tics and so on. Many of the comorbid problems might then be missed. Everyone seeing small children with difficulties therefore needs to be aware of the ESSENCE approach.”

According to Christopher, the tendency to focus on one diagnosis at a time is not new: “When ADHD emerged it nearly eliminated all thoughts of comorbidity. ADHD was brought to the fore and the fact that patients with an ADHD diagnosis also had other problems was almost forgotten. While ADHD treatment had been developed and tried it was generally thought that there was no treatment for DCD or language impairments. Therefore these diagnoses were found less interesting to study and focus on. Today, there is a similar overfocus on autism, to the extent that if you don’t have that diagnosis you might not receive any help.”

The current focus on autism only in early screening and intervention programs Christopher believes to be a big mistake. Instead he stresses the need to recognise all problems, not just “the autism”, “the ADHD”, “the DCD” or “the Tourette syndrome” and for all interventions to be individually tailored. Christopher talks about autism in plural, referring to “autisms” as a “group of multifactorially determined conditions” that always coexist with other developmental/neurological problems in cases with impairment. “There are almost as many causes as there are cases. ‘Cases’ with no comorbidity at all are not recognised or impairing early in life. ADHD as well almost always co-exists with other problems (ODD, DCD, IDD, tics, “OCD”, ASD, anxiety, epilepsy) in cases with clinical impairment.”

What are the implications of an ESSENCE approach in terms of predicting outcome?

In virtually all studies of the outcome of autism, it is the concurrent language disorder, low IQ, medical disorder including epilepsy, ADHD and NVLD that predict the poor outcome. However, in most studies, the autism “load” in itself does not predict outcome. Autism in itself has a different outcome, not necessarily poor.

“Autism without comorbidity is not such a big problem. It is impossible discussing autism as an isolated phenomenon. To be able to assess the severity or predict the outcome all other comorbid problems must be taken into account. The autism part of the diagnosis does not predict outcome to the same degree that components such as ADHD, level of intelligence, language impairment and epilepsy do.”

What about the implications of ESSENCE for screening, diagnosing and interventions?

All children presenting with ESSENCE symptoms need to be considered from the point of view of multiproblem and multidisciplinary assessment. They need to get a holistic approach – on first presenting to services, to diagnosis and intervention. The approach to diagnosis is likely to be unhelpful if it is exclusively aimed at the diagnosis of ASD, ADHD or LD etc.

Christopher stresses the need for neurodevelopmental ESSENCE centres that assemble all necessary expertise in one place. “Families should be able to enter through one door and know that the organisation behind that door is a unit and can refer them to the next step (rather than patients and their families having to visit Community Paediatrics, GP Centres, CAMHS; SLT-Services, Special Education units and Centres specialising exclusively in ASD, ADHD, Tourette syndrome etc.).”

One important feature in ESSENCE is that different problems may be more or less pronounced at different ages and the ones dominating the overall picture might vary over time. “For example tics can be present at one age and not at another and what appears to be serious autism might later prove to be Asperger syndrome and have a better outcome. These things must be known by everyone dealing with children brought in for assessment to avoid forever clinging to a certain diagnosis.”

While there in most cases is no cure for neuropsychiatric conditions/ESSENCE, Christopher says that there is help to be had in almost all cases and that much can be achieved with early and individually adapted interventions. “Motor difficulties are common to many individuals within ESSENCE and a lot can be done about that. Executive functions can be improved by improving motor skills with the help for example of martial arts. Working memory training improves the symptoms of ADHD and omega-3 fatty acids improve almost all ESSENCE problems, albeit not dramatically. Autism “in itself” is the one thing that is usually quite unaffected by interventions.”



Abbreviations:

ADHD Attention-Deficit/Hyperactivity Disorder
ASD Autism Spectrum Disorders
CD Conduct Disorder
DCD Development Coordination Disorder
IDD Intellectual Development Disorders
LD Language Delay
NVLD Non-Verbal Learning Disorder
OCD Obsessive-Compulsive Disorder
ODD Oppositional Defiant Disorder
SLI Specific Language Impairments
TS Tourette Syndrome
TDs Tic Disorders
RAD Reactive Attachment Disorder
LDs Language Disorders

 By Nanna Gillberg




 

Page Manager: Anna Spyrou|Last update: 5/29/2013
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