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News: Apr 17, 2018

The GNC at the Sahlgrenska Academy recently arranged the conference “ESSENCE 2018”, which took place April 10-11. For two jam-packed days, around thirty prominent Swedish and international researchers presented their latest research findings for 1500 delegates from more than 20 countries.

Professor Christopher Gillberg opened the conference with a talk about the ESSENCE acronym, titled “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/neuropsychiatric disorders where patients present with handicapping symptoms during early childhood (such as ADHD with or without defiant behaviour/Oppositional Defiant Disorder (ODD), autism/Autism Spectrum Disorder (ASD), intellectual disability/Intellectual Development Disorder (IDD), language disorder/Speech and Language Impairment (SLI), Tourette’s syndrome, early onset bipolar disorder, behavioural phenotype syndrome, and a variety of neurological and epileptic disorders). The central advantage of the ESSENCE concept is that, compared to the strict divisions into clearly delineated diagnoses that form the basis for how we currently organise health care and supportive structures, ESSENCE is better at reflecting the reality of different kinds of symptomatology and symptom profiles. This is because ESSENCE captures the fact that overlapping diagnoses and comorbidity tends to be the rule rather than the exception among people with a neuropsychiatric diagnosis. Problems very rarely appear in isolation. If someone has difficulties with social interaction and regulating emotions, there is a considerable risk that they also have motor difficulties, language difficulties and executive difficulties of different kinds.

The introduction to the ESSENCE acronym and its principles were followed by a three-part section on different diagnoses that fall under and/or relate to the umbrella term ESSENCE. In addition to autism and ADHD, speakers also addressed Tic-OCD spectrum, epilepsy, eating disorders, reading and writing difficulties, Fragile X syndrome, 22q11-deletion syndrome and MAPP (Maltreatment-Associated Psychiatric Problems). One issue covered in this exhaustive section was the marked increase in autism diagnoses in recent years. According to many speakers, this increase is likely due to an increased tendency to diagnose autism rather than an actual increase in prevalence of autism, which in turn reflects a trend of diagnosing autism on the basis of fewer and fewer symptoms (i.e. less criteria needing to be met for diagnosis).

Day 2 started off with a two-part section on genetics. This section included presentations about the brain’s anatomy, studies of genes that have been identified as associated with autism, and brain imaging studies that have measured which parts of the brain are activated by different stimuli (e.g. being exposed to faces that express emotional states like joy, anger, fear or grief) and thereby drawn conclusions about how different impressions are processed in the brain and what the resulting consequences are for a person’s perception and behaviour.

The first half of Day 2 ended with a section about screening and diagnosis. Speakers in this section discussed the purpose of early detection and intervention. They emphasised the importance of taking parents’ concerns seriously, initiating conversations with parents at an early stage if there are concerns related to developmental abnormalities, following up children rather than adopting a “wait-and-see” approach and coordinating support for children and parents. Intellectual disability was brought up as something that is often noted yet stays undiagnosed. The stigma associated with discussing intelligence levels can lead to children being subjected to demands that are unreasonable given their cognitive ability, and essentially doom them to fail, all the while not getting the support that they need.

The afternoon of Day 2 was devoted to a three-part section about prognosis and interventions. Among the topics addressed here were: What is the long-term prognosis for people with ASD and/or ADHD and how stable are ASD and ADHD diagnoses, respectively? What evidence do we have for the effectiveness of intervention measures in ASD? And what is the long-term outcome for girls and women with ESSENCE?

The afternoon continued with presentations about different types of interventions, where research results regarding medication, supplements and diet (Omega 3, vitamin D), therapeutic efforts, problem-solving strategies and parental programmes were presented.

The conference wrapped up with a summary of the most important conclusions from the two intensive ESSENCE days. Christopher Gillberg emphasised how important it is, throughout the entire process of examination, diagnosing, follow-up and intervention measures, to have a full, comprehensive view of the child both as an individual (all symptoms must be recognised and handled) and as part of a context (in the family, at school, etc). He further argued that in order to accomplish this, we need multidisciplinary ESSENCE teams and ESSENCE clinics where professionals from different fields (doctors, psychologists, speech and language therapists, special educators, nurses) work together in a shared physical environment.

 Francesca Happé


Page Manager: Anna Spyrou|Last update: 2/20/2019

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