Welcome to tourettesyndrome.co.uk

“Isn’t Tourette Syndrome the one where they shout and swear?” is the question that I’m often asked. Gilles de la Tourette Syndrome is a widely misunderstood and under-diagnosed neurobiological condition, and sufferers can experience prejudice and ridicule.

What can start as blinking and sniffing, can develop into a condition that affects every area of our lives. Tourette Syndrome is a spectrum disorder - it varies with each individual, and may be anywhere on the spectrum between very mild and severe. For most, it may never develop beyond blinking and sniffing (and the like), which are often written off as “nervous habits” or allergy symptoms. Recent research shows that 3% of the general school population may have tourette syndrome. 15 pupils in a school of 500 - the vast majority of which may be entirely unaware of why they have these “habits”.

Every child or adult is different, and each child or adult is affected differently by TS. TS does not affect intelligence – on the links page you will find articles about a successful pilot and surgeon, NBA basket ball player and Samuel Johnson, all who have or had Tourette Syndrome.

The presence of tics though, does not mean the individual has Tourette Syndrome. See below for descriptions of the various tic disorders, including TS.

About US

I’m “Tosy”, a single mum to 2 wonderful children.

S has had “habits” as he calls them, since the age of 3 or 4. They started with blinking, mouth opening and humming. Over the years we’ve seen a lot more, which change every few weeks (normally has 5 or 6 at any one time), but his TS is mild. His tics over the years have included - head shaking and nodding, neck stretching (forward and backward, and each side), nose scrunching, lip licking, smelling fingers and objects, whistling, sniffing, nail biting (until bleeding), picking, throat clearing, eyes rolling upwards, humming, winking & blinking, mouth opening wide, eyebrow raising, a loud & long wheeze, clicking, and other mostly quiet, noises which I couldn’t begin to describe. I was very slow to catch on, and there are times (to my shame) when I did occasionally mimic him and ask him to stop. He replied, “I can’t stop mum – I have to do it”. He described it as feeling “weird”, “funny” or “not right” until he did his “habit”. He is mostly unaware of his tics, other times, he is very conscious of them. He appears able to suppress them far more in the company of strangers, or of anybody other than me and his sister. For that reason, others are sometimes not aware of any problem. Once home, then he relaxes and consequently tics more. Some things he will only do in the safety of home. Most of the time he has relatively mild facial tics, and when we’re out - he’ll hide his face somehow - turn away, put his head down, or whatever - while he tics. He sometimes tries to disguise his tics in clowning around, particularly the noises. He may go a relatively long time without apparently ticcing (a ‘long time’ is flexible in this context, but probably anything between 5 - 60 minutes), then they’ll come in a flurry. He can go several weeks when they’re hardly noticeable (but he is NEVER tic free), but there have been times when he’s had 11-12 different tics, that are more obvious, and performed very often. They increase with stress, or conversely, whilst relaxing (eg. in front of TV). Written down, that all reads as if things are worse than they are in reality. His tics seemed to be worst (in frequency and severity) at the age of 10, and they have been lessening, particularly over the past months. I describe his TS as mild now, but his tics were very frequent, and very distressing at 10-11 years.

All those years, I mostly just accepted all those “habits”. I went along with the general “nervous habits” consensus. There are many times though, when I asked him to stop doing them - to my shame. Of course, he never did. Over the years, his tics slowly, insiduously, increased. One day, while we were out - we saw a man who was contorting his face, and hunching his shoulder. S just watched him, then as we walked away, he said “Mum, that man has habits just like mine”. That was the first indication that S was aware of his “habits”. Around this time, his tics became far more noticeable (Spring 99), and more distressing for him - head nodding, shaking, jerking, noises became louder etc. They really bothered me, and for the first time, S told me he wanted the “habits to stop - but I can’t stop them”. Even then, I did nothing. I was worried though. I’d got used to his “habits” over the years, but for the first time, I believed something other than “nerves” were responsible. I didn’t know who to turn to, or what to do. I went online, typed in “nervous habits” in the search engines, and found Tourette Syndrome. I was shocked, what I read described my son. I learned so much and found support on-line at the newsgroup alt.support.tourette (linked from links page)

In finding out about my son, I’ve learned a lot of things about myself. I’ve always had a lot of “habits” – but mine were different to my son’s. Finger tapping, circling, drumming, ‘finger writing’ (I “write” my thoughts - very finely - with my fingers!), muscle tensing, feet/toe circling (figure of 8), teeth grinding – and all orchestrated to my counting, or to the rhythm/melody in my head; counting everything (mostly in 3s or 5s), but especially my movements. Then my habits that are more easily identified as tics – the eyebrow lifting, the mouth twitch, squinting, bunny nose, the hum, the tut. I have a few hand to face type tics. My movements are not merely restlessness, I will move my feet in a circular or figure of 8 pattern, but rarely just aimless kicking. I have these movements from the moment I wake up, to when I go to sleep. I stop them only when I’m absorbed in some task (but even then, they often continue). I like to even things up too - I will do a series of movements with one hand, then do the same with the other, or both together. Short phrases repeat in my head, and occasionally I say them out loud (usually meaningless) or I may simply say my thoughts out loud. I have hidden my “habits” very well over the years, and most people put them down to my excess energy. I do tend to sit on my hands in company – they can’t move so much then, although the movements can be very slight and imperceptible to observers. I am unaware of a lot of my “habits”, other times I am very aware. I’ve been reliably advised that these movements are complex tics. These “habits” are just what I do, and I have never thought of them as significant at all. (More about My Tics)

My daughter? D’s “habits” are very much like mine, mostly finger tapping and the like. In addition, she has had various habits such as licking her fingers – each finger in turn, both hands, repeatedly. she loves symmetry and has the “evening-up” habit/tic/compulsion, whereby if she touches something with one hand, she will do the same with the other hand. She’s a great picker – and once picked her scalp until she had quite a large circular bald patch on top of her head. She often does feet tapping and kicking. She has occasionally had more obvious simple tics, but for her they only last a few days. I hesitate to list them because written down, they sound so much worse than what they were. Like me, she seems unable to be still, feet or hands are constantly moving. She also has movements that are barely perceptible, and I only notice when she’s sitting right next to me - symmetrical fine shoulder movements for instance. Like her brother, she’s very bright and musically talented. Both children want to be actors or musicians.

TS is not generally a big issue for us. My son’s attitude seems to be that it’s just something he does. He is doing a great job of coping with his tics - although his TS is mild (although it wasn’t always so). I briefly mentioned previously that he has found several tactics that seem to work for him in disguising his tics. Most of his motor tics are facial - when out, he will look down, turn away or put his hand over his face briefly, while he tics. For noisy tics, with friends or at home, he would act out some comedy routine and make the noises a part of the act - those watching are not usually aware that the noises were tics. Watching TV in the evening, he will sit or lie on the floor facing the TV - so that we, sitting behind him, can’t see his tics. He has so far chosen not to tell people about his TS. I suppose if ever it became a bigger problem, we would have to, but I’m optimistic that we may have seen the worst of his tics. It is his choice that we are not identified on this site - and I would ask those who do know who we are, to honour his request for confidentiality.

I believe that the Gts gene may be responsible for a lot of positive aspects to our personalities. I see a lot of the characteristics listed on the “Positives” page, in my children. I’d like to think I have a few too!

There is a downside too of course. Occasionally S has been teased at school, although it’s never been a big issue, and the teasing tends to wax and wane with particular tics. His poor fine motor skills also affect schoolwork somewhat - handwriting etc. Concentration (for us all) can be a problem, but that’s down to an attention deficit rather than TS, although working on suppressing has helped, a tic can have a similar effect. Compulsions and over-sensitivities affect us all too, but nothing too major. S has always been shy, sensitive, anxious - but he is slowly gaining self-confidence.

My children are gentle and compassionate, creative and hard working, talented and intelligent, sensitive and playful. They are genuinely the most beautiful people I know. My life would be meaningless without them, and I am incredibly proud that they are my children.

Summer 2002

S is 14 now, and his tics are very infrequent, and cause him no problems. They continue to wax and wane, but the waning periods seem to get longer, so that his periods of increased ticcing are becoming more infrequent and further apart. An outsider would not know he has TS (he himself believes he no longer has Tourette’s). He is doing better than ever - socially, emotionally and academically. He is no longer anxious, is much more confident, more independent and loves to go out with his friends. Puberty has kicked in, and so far it has had no effect on his TS or associated problems. Contrary to popular belief, his TS, his obsessive/compulsive behaviours etc are all improving. I am confident that they will continue to do so. An incredible difference. I would never have believed it was possible.

D too is doing equally well, but she was never affected to the same degree as S.

There is hope. Recent research gives us every reason to be optimistic for our children’s future - and my children are proof of that.