The Enquirer
Thursday, January 11, 2007

Truth about Tourette's not what you think
BY BRUCE HOLTGREN

"A friend once told me that one of the most profoundly wonderful things one human can do for another is to understand. In a world so desperately lacking understanding in so many other areas, I'm adding this small voice toward better public understanding of what Tourette's syndrome is - or, at the very least, what it is not."

more at

http://www.autismnz.org.nz/articlesDetail.php?id=16
from Autism New Zealand Inc.
________________________
[NOTE: The original link was out of date. I've asked a Moderator to do this for me as the edit feature is no longer working]

so good to see an article like this one in the media

thanks for posting it Lara

Cool article, thanks for posting the link... I just had one problem with it. Near the end he says "And it's mainly kids who have Tourette's who are most in need of a break. For almost all the rest of us, it's a harmless nothingburger of a condition"...

This bothered me as an adult with ts. I understand how hard it was to have ts as a child, as i went through it all. The problem is, at least when you are a kid its easy to find others with ts symptoms, and to find support groups in your area.

And with all the new laws in schools coming out about kids with ts and other health impairments its getting easier for them to get accomodations.

Its not as easy when you are in college. Firstly because for the majority the tics diminish during adolescents college professors dont see ts as often as school teachers do. And they certainly have far less training in how to work with a student who has it.

Also in the workplace, its expected for adults to maintain self control. Management, co workers and others dont seem to want to take the time to understand that while tics may be easily controlled and supressed one day, the next day they could be off the wall. And finding a neurologist who is familiar with treating an adult with ts can sometimes be nearly impossible. When i was a kid there were loads of neurologists but ive found it quite hard to find ones who are comfortable working with an adult with ts.

When i look back, having ts as a kid was a breeze compared to having visible and auditory tics as an adult, where one is expected to have all the self control a child doesnt.

I totally understand what you're saying, sen.

There's also very little in the way of support anywhere for the adults who need it. There have been a few changes, and things are changing though, albeit slowly.

Even 10 years ago there was almost nothing available for anyone with TS where I live. 15 years and 20 years before that, it was just dreadful!

We all just have to keep plugging away and fighting the fight.

The more good information that is out there the better. It can only rub off across the board.



edited to add: I think that the TSA has a lot to do with all this. They've definitely focused away from adults for years and years, although they have in the past year or two added adult information to their website as well.

Most definitely lara, i think the tsa is a great resource, but i went to a national conference in 2002 i think.. and it was very awkward for me, as i wasn't there as a parent or a professional, or a child with ts, so there was very little there, and the few panels they had for adults with ts, seemed to focus mainly on adults with other developmental disabilities as well.. such as independent living skills etc.... And whenever i have contacted a local tsa group they all tell me they really offer nothing in the way of support for adults with ts...

sen, the conference in DC in 1998 was just super. There were many, many adults there and everyone had so much fun. I don't remember sleeping much and I remember drinking way too much coffee for my own good. I've heard about the conferences since then and have heard the same thing you've written. I don't think anything could beat that one in 1998. It was at a time when people were finding the net and finding each other. I guess it was like a revelation of sorts.

There used to be a couple of good sites online run by young adults. Wendy Faulkner and "inetd" come to mind. They had a website called TS is Fun lol. I don't think it's online anymore, but it had a lot of helpful information and direction on it. I'm not sure about the guy from Canada. Trying to think of his name... Life's a Twitch is the site... I'll go look up his name, it's embarrassing I can't remember it. I think there's good adult stuff there too. Same with the TS Foundation of Canada. I know they have a reasonably busy adult forum, but it's been a long time since I checked it out. TSFC always seemed to have a lot going for adults, even in their conferences.

TSA Washington State always had a very good number of adults involved in different ways. Not sure if it's still like that today, but certainly was for some years between 1997 and maybe 2000. For some reason I always thought you were in the North East, but your location states Northwest, so if you're in Wash state, maybe contact someone on the board there. Bernadette might be able to help you out. She's a gem.
http://www.tourette.net/wa/

You've probably seen all this before but you might find something of use...

OK. I remember now. Duncan McKinlay http://www.lifesatwitch.com/home.html

TSFC http://www.tourette.ca/

edited again: just scanned TSA WA site, and they don't seem to mention any adult meetings anymore. I know they used to though.

One thought I have about support group meetings, is that it's great if there's a mix of adults with TS and adults without TS who have children with TS and also adults with TS who also have children with TS.

gosh I think I confused myself a few times writing that!!!

It seems to me to be a great way of interacting and learning from each other. The TSA Wash. meetings that I attended were great like that because there were a number of young adult volunteers who spent time with the children just mucking about and having fun which their parents might be off watching a video or listening to informational address. The kids loved it and so did the adults who were spending time with them.

Senny,

I agree with you on the pannels like independent living skills. I went to the TSA concerences in 2004 & 2006. I kind of felt like the adult program was more geared to those with severe TS who have trouble working, attending college, coping, etc. I think the largest part of it for adults is more about the social aspect of it, rather than attending the sessions. Many of us would skip out on sessions to talk & hang out with others that had TS. I did this. At the 2006 conference I got bored and was tired of attending sessions so I skipped out on a few of them.

For me, I don't have trouble working because of my TS. I don't have any issues with college either as long as I have a few accommodations such as extra time on tests which I rarely use anymore. By the age of 21, I've pretty much learned how to cope with my TS so that's not very important to me either. I think the sessions are also probably wonderful for the newer ones that are just learning they have TS after not knowing, etc. They did have a lot of sessions when I was there.

Carolyn

Hey thanks lara for those sites.. i do post on a myspace bulletin board which has loads of people who are older with ts, so thats cool... I used to live in the north east, till last august, when i relocated to atlanta georgia, then in december relocated to washington state, so i will definitely check out things in my area...

Senny, do you have the link to myspace bulletin? I haven't been able to find it.

http://groups.myspace.com/tourettes

thats the link to the bulletin board i post on.. it seems to be one of the larger boards and has a lot of younger (as in 20's and teens) members on the site... lots of categories are there that aren't on these brainchat/neurotalk websites...