When it comes to dealing with illnesses, there are now two approaches. Either one tries to prevent the physical or mental disorder or to cure it. On the other hand, a different approach is on the rise: the disease is defined as a part of human identity that is worth protecting and which doctors should, please, keep hands off of, as an example from Great Britain currently shows.
The so-called Spectrum 10K study is currently in a falter. It is one of the largest studies ever on autism spectrum disorders. An international team led by Simon Baron-Cohen from the University of Cambridge started it a few months ago. Over a period of ten years, the researchers wanted to use questionnaires, digital health data and genetic analyzes to clarify important questions, especially why many people with autism suffer from epilepsy or depression, while others do not. One should think a worthwhile goal. But now the study is on hold for the time being.
A problem doesn’t go away just because you close your eyes
The scientists gave in to pressure from those affected by associations who feared misuse of the genetic data and, overall, felt that they were not being heard enough. Activists want to prevent autism from being viewed as a disorder. Neurodiversity is the name of the new term according to which autism, ADHD, dyscalculia, dyslexia or dyspraxia are to be regarded as variations of normality.
On the one hand, it is understandable when people defend themselves against being labeled as sick by definitions, although they do not feel that way at all. It may be that some advocates of the neurodiversity idea live happily. Only: many others don’t. 5,000 people in the UK have signed a petition against the Spectrum 10K study and 700,000 people with autism spectrum disorders live in the country. Research is the prerequisite for looking for therapies that reduce suffering. The in some parts radical protest against it now means that all those people who urgently need help do not get it.