CONFERENCE. The first international conference on ESSENCE–a relatively new umbrella term for the whole group of neurodevelopmental and neuropsychiatric disorders that manifest themselves during early childhood–convened in Gothenburg on April 10–11. Almost 1,500 participants from around the world attended the conference, which was described as a great success by the organizers. Researcher Nanna Gillberg provides us with a summary of the two days.
The ESSENCE 2018 conference was held during two intense days, with about 30 prominent Swedish and international researchers presenting their latest findings for 1,500 delegates from more than 20 countries. The conference was organized by the Gillberg Neuropsychiatry Center at the University of Gothenburg.
In his introduction, Professor Christopher Gillberg spoke about the ESSENCE acronym on the theme “the Essence of the Essence.” ESSENCE (Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations) is an umbrella term coined by Gillberg in 2010 and refers to the entire group of neurodevelopmental and neuropsychiatric disorders that appear with debilitating symptoms during early childhood, including attention-deficit/hyperactivity disorder (ADHD) with or without oppositional defiant disorder (ODD), autism spectrum disorder (ASD), developmental coordination disorder (DCD), intellectual developmental disorder (IDD), speech and language impairment (SLI), Tourette’s syndrome, early-onset bipolar disorder, behavioral phenotype syndrome, and a range of neurological and epileptic disorders.
reflects the symptom profile
A central tenet of the ESSENCE principle is that it better reflects the clinical picture and symptom profile within what is referred to as neuropsychiatry than the divisions in strictly delimited diagnoses that today’s organization of health services and support structures are based on. This is because ESSENCE encapsulates the fact that overlapping diagnoses and comorbidity are the rule rather than the exception in individuals with a neuropsychiatric diagnosis. A problem very rarely occurs alone. If you have difficulties with social interaction and emotional control, the chances are that you also have motor difficulties, language difficulties and performance difficulties of various kinds.
a tendency to diagnose autism based on fewer and fewer symptoms
An introduction to the ESSENCE acronym and its principles was followed by a three-part session on different diagnoses within or related to the umbrella concept of ESSENCE. In addition to autism and ADHD, subjects discussed included the tic-OCD spectrum, epilepsy, eating disorders, reading and writing disabilities, fragile x syndrome, 22q11 deletion syndrome and maltreatment-associated psychiatric problems (MAPP). This session considered the significant increase in autism diagnoses in recent years, which several speakers attributed to an increase diagnosis rather than a greater incidence of autism. This reflects a tendency to make an autism diagnosis based on fewer and fewer symptoms.
Day 2 started with a two-part session on genetics. This session included presentations on the anatomy of the brain, the study of genes identified as associated with autism, and brain imaging studies measuring which areas of the brain are activated by different stimuli (for example, exposure to faces that express different emotional states like joy, anger, fear or sadness), enabling conclusions to be drawn about how impressions are processed in the brain and what consequences they have for a person’s perception and behavior.
the importance of taking parents’ concerns seriously
The pre-lunch session presented screening and diagnosis. Reasons for early detection and intervention were discussed. This session emphasized the importance of taking parents’ concerns seriously, initiating discussions early with parents if concerned about deviations in development, following up on children instead of a “wait-and-see” approach, and coordinating support for children and parents. It was pointed out that intellectual disabilities are something often noted but still continues to be undiagnosed. Stigma associated with discussing aptitude level can subject children to requirements that are unreasonable based on their cognitive abilities, dooming them to fail and depriving them of the support they need.
The afternoon of the second day was devoted to prognoses and intervention. Issues addressed included: What is the prognosis over time for individuals with ASD and/or ADHD, and how solid is an ASD and ADHD diagnosis? What is the evidence for the effectiveness of interventions with ASD? And what are the prospects in the long term for girls and women with ESSENCE?
The afternoon continued with presentations on various types of interventions, with presentations on research results regarding medication, supplements and diet (Omega 3, vitamin D), therapeutic initiatives, problem-solving strategies and parenting programs.
The importance of a holistic view of the child, both as an individual and as part of a context
As the two intense ESSENCE days winded up, Christopher Gillberg emphasized the importance of a holistic view of the child, both as an individual (all symptoms need to be taken into account and managed) and as part of a context (for example, in the family and at school) during investigations, diagnosis, follow-up and interventions. To achieve this, he advocated multidisciplinary ESSENCE teams and ESSENCE clinics in which different professional groups (doctors, psychologists, speech therapists, special educators, nurses) work together in a common physical setting.
TEXT: NANNA GILLBERG
