[senco-forum] Tourettes or not?

I know Tourettes is not all about swearing , but ...we have a female

Hi Linda,

> I know Tourettes is not all about swearing , but ...we have a female
> student who swears .This has recently extended to sexually based
> comments and actions directed towards staff.

Yes you are right. Only about 25% of people diagnosed with Tourette
Syndrome have the specific symptom of swearing and cursing or
'coprolalia' to give it its correct medical name -- Latin I think for
'Dung Breath'. There are also many more people with undiagnosed (often
mild) Tourettes who of course won't have this specific symptom either.

> She can be very aggressive, usually pulling hair and recently
> throwing objects. > This has been extremely distressing for her
> family and staff. She has diagnosed speech and language (especially
> communication) difficulties and does have learning difficulties.

Tourettes is a complex disorder and more often than not it is comorbid
(occurs together with) one or more additional disorders.

> I had assumed she did not have Tourettes because she has not done
> this all the time. There have been periods of weeks when she has
> done this starting from year 7, but then months have gone by when
> everything has "gone quiet"

This is very common with Tourettes. The condition as a whole or
individual tics tend to wax and wane greatly over time, often to be
replaced by another completely unrelated tic centred on another part
of the body ...with the original tic only to reappear some months
or even years later.

> Now she is in year 9 and we have been in
> the most challenging period yet, where health and safety concerns
> are now paramount among the staff who deal with her. ( I speculate
> that adolescence and hormone changes may have exacerbated what has
> been happening).

Yes adolescence is a time when symptoms are usually at their most
pronounced, with the onset of puberty often heralding the start of
Tourettes or a significant increase in ticing.

> She has to have someone full time with her and she
> is taken out of many lessons.

A wise precaution. However has this person(s) had any training
regarding supporting children with Tourettes? If not I strongly
recommend you contact the UK Tourettes association and get hold of one
of their new Information Packs.

> We are still pursuing medical investigations after two years! The
> family have had a period of therapy from CFCS.

This might help other family members cope better with the situation
but it will likely do nothing to stop her tic related behaviour. This
is because Tourettes has a predominantly neurological basis rather
than being psychologically based. In fact therapy and counselling can
be very counter productive or even harmful if there is an expectation
that a person with Tourettes should be able to suppress their tics.
More specifically this can be very damaging to their self-esteem.

> I have recently found out from our school doctor (seen yearly or at
> an even longer interval !) that she is now being referred to a
> special clinic and will have a brain scan etc.

School doctors vary in their degree of expertise regarding
neurological disorders but in my experience most are pretty useless if
they haven't come across a child with severe Tourettes before. She
needs to be referred to a specialist who has extensive experience
dealing with Tourettes. Furthermore a brain scan is unlikely to reveal
any abnormality if this child does have Tourettes.

> She has brief periods of "absences" when she loses focus and fixes
> her gaze elsewhere.

It's possible she might also have absence seizures (epilepsy) in which
case an EEG (electro encephalogram) might serve to confirm this.
However this apparent absence might actually be a staring tic where a
person with Tourettes fixates on an object or a person for a short
period of time. This might also be OCB (Obsessive Compulsive
Behaviour) where a person feels compelled to keep completely still,
often while they count up to a certain number or until some other
event happens. It might also be a symptom of ADD (attention deficit
disorder) of the 'distractible' sub-type, during which she's
daydreaming.

> I know that autism and various chromosomally based syndromes are
> being considered. Does anyone think Tourettes could be involved as
> well?

Yes, Tourettes could be one of many factors that are the root cause of
this behaviour. However from what little you've told us so far I
suspect there is more than one disorder in operation here. Medication
might help in the longer term, but most important now is to work on
appropriate supporting strategies.

> I am trying out various approaches with her (particularly involving
> social skills training ) but would be glad to hear from anyone who
> has experience in this field who could also give some advice.

I'd be willing to help in any way I can. You are welcome to email me
direct;  bowles.d at gmail.com.  In which part of the country are you
based?

> I have in the first instance to deal with the "dangerous"
> behaviour-i.e. the "attacks" on other students and staff.

Yes of course this must be your first priority. Does this student have
any awareness during or after these attacks? One issue might be that
if she has been severely chastised for this behaviour in the past and
as a consequence she might be very reluctant to own up to and talk
openly about this. The best approach is to accept this behaviour is
going to happen again and that she can't help it or can only control
this to a limited degree.

It's possible she might be experiencing what's known in the Tourettes
community as 'storms' -- uncontrolled rage attacks. Starting from a
basis of acceptance you can work with her on creating an 'escape' or
'safety' strategy whereby what little remaining control she still
retains is directed towards finding a safe space where she can express
her behaviour without harming herself or others. This might involve
moving towards the door or a 'safety corner'. Also it might help if
staff have handy a large pillow or bean bag she can rail against. Any
small improvement in her ability to get herself into a safer position
will need lots of encouragement and heaps of praise whenever this is
achieved. Also don't worry if the progress you make is followed by
regression. Two steps forward followed by two steps back still
represents progress over the longer term.

> This behaviour as well as the swearing does seem to have an element
> of not being in her conscious control and can come "out of the blue"

Yes, tics can be triggered by anything or nothing at all.

> ...although it may be a delayed reaction to something that has
> happened earlier, such as classmates teasing her.

People who have Tourettes can sometimes 'hold it back' far a while,
but this usually serves only to build up the pressure and eventually
there is an explosion of tics or rage. This delayed reaction to
teasing is a classic response.

> It may also be related to an over stimulating environment.

Possibly if she also has ADD (Attention Deficit Disorder) or OCD
(Obsessive Compulsive Disorder) that might be triggered by objects in
her immediate environment. Remember also that having and coping with
Tourettes and other neurobehavioral disorders is usually extremely
tiring.

Now of course this might not be Tourettes, or Tourettes could be just
a minor facet of her overall basket of disorders. But with any
neurological disorder the best approach is to start from a position of
acceptance and then work on effective coping or redirecting (but NOT
suppression) strategies.

I've just returned from several days in the USA working with a whole
bunch of kids all of whom have Tourettes, and the message that came
across from them loud and clear is if you think it's hard coping with
a kid who has Tourettes remember it's a lot lot harder being that kid
who has Tourettes.

David Bowles
...and BTW I have Tourettes myself!