...Tourette Syndrome...

[SourceShield]

Hi.

I wrote a post awhile back extending my hand in help for any folks that may have Autism inc/ HFA and Aspergers.

I would like to do the same to day with anyone out here that may have or know someone that lives with Tourette Syndrome - TS.

Quite often those of us on the spectrum will also have to live with other conditions as well i.e. OCD, ADHD and/or TS.

Having an HFA brain, I too have had to live with TS - oddly enough it is the TS that I find most difficult to explain to people because most people have seen the stuff on comedy shows or movies, of people swearing their nut off...some of us are like that, but its just not like that for all, of course.

I do have 'sweary' moments!

Its like the brain just overloads and you cant control what comes out - I grew up in a home where every second word I heard was a choice 'french' one!

My first word was a swear word!

At my first day at school I got so confused I just let rip and went completely beserker at the teacher.

She thought that I was possessed!

But, TS is more so acknowledged by two main factors -

1) Motor tics --- which are repetitive non-rhythmic movements

2) Phonic tics --- what are known as utterances

Oddly enough though some of us can develop atypical responses as well -

I dont have the tics instead I have what I call... The Claw!

The muscles in my had will become tense and my fingers will curl...to look like a claw!

But, if you look closer - you would see that I am kinda 'ticking' within that movement as well.

And, not all TS sufferers swear which is technically called 'Coprolalia' - but some will just repeat the same word, over and over and over again - which is referred to as 'Palilalia'.

For some of us it'll come on when we 'feel' uncomfortable or misunderstood and judged.

TBH - there is actually NO same identical case of TS - this is because once the 'nurture' process kicks in, which is just about how things are at home, the TS sufferer will simply display behaviour that befits their environment.

i.e. I grew up in a home where swearing happened all the time, every day...so I normalised the swearing.

But, in the same respect - some TS sufferers have been known to suffer with Coprolalia - even when there was no swearing at home!

Which supports the theory that there is no one size fits all with this syndrome.

I feel that I dont need to get too sciency with all this really, but more-so, offer my support to others out here.

I am here for you.

There is no shame!

[SourceShield]

**The muscles in my HAND...***

D'oh!

[SubduedBlues]

SS

I have had Tourette Syndrome as long as I can remember. I really like your thread, bu I have to disagree with one aspect of your introduction to Tourette's "the TS sufferer will simply display behaviour that befits their environment." As if? The TS sufferer has pretty much nil control on when or how the tics will manifest themselves. The only we know for certain is that they WILL happen, we just don't know how or when. And when is usually at the least convenient time. Sure we can suppress them for a short while, like suppressing a hiccup or sneeze, but it's coming out and there's nothing you can do to stop it.

I have palilalia, but when I was a child I also had echolalia (repeating sounds that I heard). I also get motor shudders through the spine, rapping knuckles and fingers, clicks hoots and whistles. The tics are a lot more prevalent and obvious when I have had a few, so apparently I am fun to go party with.

I find it interesting that most people always associate the manifestations as depicted in the Bill Murray smash hit move 'What about Bob?' In reality, vocal manifestations of vulgarity (coprolalia) affect less than five percent of TS sufferers. Tourette's motor tics are involuntary and complex muscular and/or muscle group movements, not a simplex tremor in a single muscle or muscle group -- rather a complex serial movement of multiple linear muscles. For example from upper arm, fore arm, wrist, hand, fingers. Vocal tics are involuntary vocalizations of words and/or sounds; or the absence of words/sounds. The absence piece is a lot more complex in that the sufferer will skip one or more words in a sentence, or syllables in words, but the brain believes that they were spake.

A palilalia stammer, or studder, is more complex that those with speech impediment. Those with an impediment may say B-B-Blue B-B-Book, where the TS sufferer would say Blue Book Blue Book Blue Book. This is not to say that TS won't mimic that of the impediment, rather that it can manifest as the simplex and as the complex.

A lot of people have motor tics or vocal tics, but not both. The key determining factor of someone having TS over a general Tic disorder, is that to have TS you must have both motor AND phonic tics AND they present themselves regularly for more than a year.

More kids get Tourettes and/or Tic disorder
• than Cerebral Palsy
• than Diabetes
• than Leukaemia
• than Impetigo
• than Scarlet Fever
Make a £ü€&ín' donation!

tourette.org.au

SB

[SourceShield]

SB,

Thank you for that response.

You're absolutely correct.

My mistake!

Im also glad that another person with TS has responded!

Because, I dont know everything about everything.

Also with limited characters, I was unable to go into too much depth.

I am glad that you cleared that up.

But, I did also mention that no TS cases are the same either.

Ive also lived with TS all my life, with the HFA, and perhaps it was a way for my DR to appease my Mum, when I was young...because thats what we were told, oddly thats what I have believed for all these years.

But, we are talking about NZ in the 70s!.

The TS is something that I am only now, really, genuinely 'looking' into, so I am glad that I have you to turn to for some advice on this, myself!

---

Thanks SB.

SS

[SubduedBlues]

SS

TS in the 70s, mine started in the 60's, but I doubt they knew much of anything 10 years on anyhow. It's only been since the turn of the century that there has been any real headway in societal acceptance, let alone advances in the education system.

I'd say the UK is probably the best organized, followed by a close second with Canada. The US is too scatterbrained across the individual states to say that the country is good/bad. Australia has been coming along in the past few years, but still has a long way to go before any level of tolerance is found in society, let alone acceptance.

Anytime you want to speak about TS, reach out. Happy to help.

SB

[SourceShield]

Thank you TS!

I do have a couple basic questions - how is it for you now?

I ask because, some days I really dont cope well with it - not whole days, obviously, but 'moments' that still take me awhile to fully 'recover' from.

What 'coping strategies' do you have in place?

Just curious.

MuchLove

Kaitoa

[SubduedBlues]

Often I just ignore the tics, just let them happen. Well, the motor tics anyhow. The vocal tics, I tend to damper those down by keeping a lolly in my mouth.

I draw (artistically, yet poorly) as a means to dampening the motor tics. Sometimes I sculpt or paint.

The tics that really annoy me, and luckily they don't happen that often, are the ones that alters my accent on different words. So I could end up speaking a single sentence across three or four completely different accents. It really confuses people.

When I am having the more obvious motor tics, sometimes people ask me "Are you alright?" to which I usually reply, "what makes you think that I am not?"

I cannot stop it, so over the years I have learnt to accept it. Sort of like my hair turning grey, nothing I can do to stop it. Coloring it is only a symptomatic bandaid, it doesn't fix it, the grey is still there. Likewise, I can try to mask or hold-in the tics, but they're still there. Accept it and move on to what you can change.

SB

ps: I googled Kaitoa, and got a definition of: "It serves you right" from Maor; I guess it's one of those phrases that is lost in translation. We say it to mean one thing, but the translation is something less.

[SourceShield]

SB

Thanks for that, actually makes me feel better, much better about the TS.

---

Like many indigenous languages, Te Reo Maori has many meanings for one word .

i.e.

Cantonese has five 'tones'.

'Kaitoa' does mean - "serves you right"

Also, as a noun - Kaitoa means "Brave or Warrior" - if you Google the whole thing like - "Kaitoa, Te Reo Maori, Warrior" - It'll take you to the Te Reo Dictionary, all you have to do is scroll down, to find Kaitoa.

Ive always been fascinated by languages.

My masters was in Cross-Cultural Communication.

It must be alarming for others to hear you speak at times then, if it sounds like youve got many accents going on!

Thanks SB

SS