People with TS need to take possession of the 'disorder' in terms of raising awareness and respresenting their rights. It is time to demand a certain standard of provision in terms of medical care, education and human-rights and to require adequate explanations for why they are often treated less favourably than those with other more 'mainstream' conditions such as dyslexia, ASD or cerebral palsy. The medical profession in particular must be 'educated' in a more consistent way and misconceptions addressed. Experts (without TS) who have a true understanding are woefully uncommon. If you have TS you know what it 'feels like' and what information is intuitively 'logical' or illogical regarding TS.
The UK's paediatric 'bible', for example, a substantial textbook which is the standard reference for paediatric practice, contains only a few paragraphs on TS, in fact less than most factsheets, which is both disappointing and of little value for such a complex and prevalent disorder. I have dealt personally and trained with doctors who are professors in paediatrics, neurology and also psychiatry (and also neuropsychologists) and have been astonished at the extraordinary lack of understanding they have about Tourette Syndrome and it's clinical presentation, diagnosis and management. The only solution is for the 'TS community' to take charge of things to a greater extent and to push forward the improvements that are sorely needed.
