Recent genetic research suggests that that TS is not a discrete, unitary condition, but rather covers a spectrum of subtypes across a broad range of compulsive disorders (1). Tourette tics are complex and changeable, changing in type, frequency, and severity over weeks or days. They range from almost imperceptible tics that may disappear quickly, to chronic tics that can cause serious physical injury. The result is an elusive, highly nuanced contrition that is challenging to diagnose.

“Often co-occurring conditions will get diagnosed, but the tic itself will get written off as secondary or something that will go away” says Talty, “if it’s a sniffling tic a pediatrician might send the child to an ENT (Ear Nose or Throat) specialist. If it’s a blinking tic it might be attributed to an allergy and the child sent to an allergist. Almost every family we speak to identifies getting a diagnosis as the number one challenge, and most have had the experience of being bounced between doctors before landing on a neurologist – and it usually is a neurologist – who finally diagnoses them. We hear that a hyper-focus on one thing, be it ADHD or OCD, is a big challenge that often leads to other important symptoms being ignored. Current medication too can sometimes exacerbate one condition over the other – whilst those of us working with TS understand that it’s a soup. You can tease out certain ingredients but ultimately there will always be a whole range of issues involved in Tourette.”