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The concepts of symptoms, diagnosis and treatment are the corner stones of the medical model. The patient has some pains or functional impairments, the symptoms are examined, and a diagnosis is put forward. Very often an effective treatment is available. For neurodevelopmental disorders, ESSENCE, the picture is different. There is no healthy or “normal” prior condition, there is no absolute line dividing a diagnosis from normality, and the concept of treatment is not straightforward.
A few years ago, the American radio personality, Thom Hartmann launched the book Adult ADHD: How to Succeed as a Hunter in a Farmer’s World. The bottom line of his theory is that before mankind settled down as farmers the traits constituting ADHD had some obvious advantages. Being easily bored, restless and impatient led to searching for new areas of hunting. To hyper-focus when a prey was approaching helped survive. About 5000 years ago we settled down as farmers, and the restless hunter lost his advantages, ending up as a diagnostic category in our modern society. Professor Russel Barkley, one of the most prominent ADHD researchers in the world, was highly critical to these views. Being inattentive and struggling with the control of impulses has never been an advantage, and telling the society that people diagnosed with ADHD are hunters in a farmer’s world will not help them getting the support they need. This controversy raises an important question however: Is treatment about “normalising” the patient and reducing their symptoms, or should the primary focus be on making changes in the environment to be better suited for ADHD?
Many years ago, we stopped saying autists or autistic people, replacing these terms by saying people with autism to underscore that they are individuals, not diagnoses. “The Times They Are a-changin” as Bob Dylan once wrote; these days some people diagnosed with autism prefer the words autist or autistic people. The traits or symptoms constituting their diagnoses are integrated and valuable parts of their personalities, not something that need to be treated. Strength based approaches to treatment, and the social model of disabilities constitute a basis for “the neurodiversity movement”, an autistic movement telling the world that they are “neurodivergents” with important contributions to society (often stemming from their “restricted interests”), not “neurotypicals” as the rest of us. To cite the editor of “Autism” (1-3, 2018): “Within the neurodiversity movement, autism is conceptualised using the social model of disability. Under this model, disability is seen as resulting from a poor fit between the (physical, cognitive or emotional) characteristics of a given individual and the characteristics of their social context. A person is disabled not by their impairment, but by the failure of their environment to accommodate their needs.” The neurodiversity movement argue that quality of life, not symptom reduction, should be the goals of treatment, although admitting that treatment of symptoms sometimes is justified.
An example of unique contributions from people diagnosed with autism is 17 years old Greta Thunberg from Sweden, diagnosed with Asperger syndrome. Last autumn she started a rapidly growing international movement among young people demanding that the adult generation take immediate responsibility to save the environment. Thousands of young people around the world are striking, leaving their schools, and entering the streets with banners and posters. Greta Thunberg tells us that she is thankful for her diagnosis making her see the world differently from others. Her focus is on climate change, not on social codes and how to receive as many likes from others as possible.
As professionals we need to be aware of these perspectives, but not without a critical view. We can make some adjustments within modern societies to make them better suited for people with ESSENCE diagnoses but being able to focus on tasks that are not immediately satisfying, controlling impulses, and understanding basic social codes, are important skills in all societies, and contribute to quality of life.
Blog post by Geir Øgrim
Credit: Tommy Ødegaard