Tuesday, September 02, 2008

My interview on StutterTalk

You can listen an interview with me on StutterTalk.

Here is a summary: (from what I remember, which is probably very biased!)

We started out having a speech goal. Mine was to speak slowly with pauses, and I was able to maintain this for about 3 seconds. 

Crackpot Award:
I explain that I want to break the code of silence and consensus by naming and shaming the most extreme offenders in ignoring scientific evidence and promising cures. I read out loud an email, where I show how crackpots are unable to engage in a constructive debate on stuttering. Greg agrees with me that no matter how nice you are or how hard you worked if your idea is wrong it is wrong and you need to be told loudly and clearly and why it is wrong. 

Measurement of sucess:
Peter complains about the excessiveness of measuring treatment sucess. I agree with him. It is like telling someone that your new car costs 17'4563 dollar and 34 cents. For all practical purposes, the car costs 17'500 dollars. There is no need for great accuracy. The false accuracy fallacy is a warning sign for pseudo-science at work. For therapy work, rough qualitative assessment by the therapist and patient is fine for me. What would you do with all this information anyway? Of course, if you want to evaluate a treatment method, you need to do it thoroughly. So my stance is: Either do it very big and very well, or don't do it at all. Greg came in with the needs for standards, and I said that the health services like to see such standard as they now need to set targets.

Lidcombe & early intervention:
I say that I am not against the treatment method per se but the way it is marketed promising a lot and based on weak and flawed research. In fact, I have no issue send my kids there. However, they have not showed long-term efficacy as they claimed. And most importantly, they have not shown that Lidcombe is better than any other treatments, because it has not been tested against others. Greg made a blatantly obvious observation that totally escaped my mind so far: They (different approaches) all talk about theory, but when you actually look at what they do, it is very similar! They all talk to parents, the kids know that it is about their speech, do speech exercises, and so on. I mention that Marie-Christen Franken from the Netherlands is currently running a trial where she compares Lidcombe with demands and capacity theory. 

Medication:
I say that medication is the only hope for improvement of ALL people who stutter on a large scale, because behavioural therapy might work for some but not for all. In the same way as diets work for few, because most are not able to stick to the new behaviours. Peter is unhappy, and explains that for two years he consistently worked on changing his behaviour. I reply with: Good on you, but many including myself were, are or will not be able to do what you have done. We are not Peters! Peter felt embarassed and somehow emotionally cannot handle the fact that he is special in this respect. I also emphasised that I am not saying that there is such medication now, or that there even will be such a medication, and that it will be a cure. My prognosis is rather than there will be better (and possibly individualised) medication within 10 years in combination with behavioural therapy that makes stuttering more or less manageable for all. It is a guess, no more. I am not fond of medication pe se also due to side-effects, but I do not see another efficient way forward unless we get some very efficient behavioural therapy.

Future:
I said that I am waiting for old professor with old ideas to retire. In physics, we say that progress is not made by old professors changing their old ideas but by them dying out! 

11 comments:

Ted said...

Suggestion for you Tom...

Get a transcription of your interview for stuttertalk.com from one of these sites: http://castingwords.com/
http://www.transcriptionstar.com/
http://www.e24tech.com/

It would be a very gentle courtesy for your international readers who do not understand spoken English.

Jane said...

Tom -

StutterTalk is a web cast site my son, who stutters, and I listen to. As we listened to the program, my son found it disturbing to listen to your difficulty with talking and stuttering. He is afraid of developing a level of stuttering that is that severe. I admire your "stick to it" attitude, but do you find the severity of your stuttering to limit others understanding what you are saying? It is amazing the different degrees of severity PWS exhibit.

Tom Weidig said...

Ted:

I will summarise the interview on my blog.

Jane:

Re the cast, the sound quality is not very good, so that certainly doesn't help, on top of my stuttering. In general, I don't think I don't think people don't understand what I am saying.

My fluency does vary. In daily life, I am more fluent, and sometimes completely fluent. I am at my worst when I think hard to get the right formulation in a social situation. But was is my alternative? To shut up?

He should record his speech and listen to it as a feedback. And you don't catch stuttering from someone else.

Tom Weidig said...

And, I forgot to mention that I also didn't listen to my whole interview. I HATE TO LISTEN TO STUTTERERS! :-) And I also had trouble understanding at times but that is mostly the sound quality

Malcom said...

After listening to the podcast, I am wondering what type of speech therapy have you received VS the host's of the show? Are the therapies in Western Europe different than the ones offered in America? Do you ever feel therapy has failed you?

Thanks!

Olivier said...

Hello Tom, you said medication is maybe the only hope. But in a very long term (within about 2060), what do you think about the promises of the nanomedicine ?
I'm thinking particularly about "vectorized", intelligent and targetted drug delivery systems...
I'm working hard to write a post on this for my blog, even if most of us are thinking it's still sci-fi.

Olivier

PS : I translated this summary of your talk at StutterTalk in french, on my blog.

Greg said...

Hey Tom,

Love to have you back on... And sorry for the sound quality. We just figured out some new techniques that will improve the sound quality DRASTICALLY. :)

And as for Jane--Don't really know quite how to respond to you. We are who we are. And time marches on, regardless of who we are. So the fundamental basis of the self-help movement is to like who we are, accept who we are, and make the most of who we are. Time is a constant, and it continues on with or without our consent. Stuttering is what we make of it, and really nothing more. We can allow it to rob life opportunity from us, or we can continue to take on life regardless of stuttering or other people's comfort levels relative to our stuttering.

Desensitization--it's a good thing.

Tom--love to get you on again, and w/ better sound!

Anonymous said...

Hi Tom,

I find it amazing that people are being critical of your speech - doing an interview must be one of the hardest speaking situations imaginable.

All of us have good/bad days and good/bad situations...I know I do.

Tom put himself out there and should be applauded for doing this.

Despite a stammer, you have been more successful than most fluent people in getting a PhD, working for top investment banks and setting up your own business (not to mention a rated chess player)

The stutteringbrain blogsite is an amazing source of information and must take a lot of work and effort to maintain - keep up this great blog.

Credit where credit is due Tom.

Just my 2 cents

Steve in Canada

Daniele Rossi said...

What a nice surprise to hear you interviewed on Stutter Talk! I haven't had a chance to listen to the entire interview but I'm looking forward to hearing the rest.

Jane: Everyone stutters differently and at different levels of severity. Like Tom said, his stutter (and mine) vary depending on scenario. I consider my stutter usually moderate but when I was recently interviewed on the radio, it was severe. Let your son know that he has nothing to worry about. He can accomplish anything he wants to regardless of how much he does or doesn't stutter.

Anonymous said...

Steve in Canada -

Tom's blog is excellent. As a PWS, I really have grown to read it on a consistent basis.

Reading of this Stuttering Brain blog will reveal that Tom often writes comments that could be construed as critisism or critical of not only researchers, research, methods and views (ie The "Crackpot Awards", lidcombe, the aussies, current reseach of some "experts", etc!!), but also taken personally. For all PWS - myself included - I've found many people are ctitical of stuttered speech, and if your gonna put it out there, you're gonna bring the boo birds. And it sounds like you and others don't like people being critical about Tom's speech. If your gonna talk, you're gonna risk it coming. Better pull your boots up or get the gloves on. Grow up and get used to it.

If you're gonna bark like a big dog, your gonna risk getting bitten.

If you attempt to be a leader, someone is always gonna try and take you down.

Tom should know this, and accept it as part of it all... I don't feel sorry for him in the least bit - It is all part of the stuttering experience. Most of us who stutter and choose to speak - and speak out - know this.

Just my nickel's worth.

Adrian said...

Tom,

I am a bit late, but just listened to your interview. Great job! I was pleasantly surprised that you actually do stutter. I am tired of the gurus who don't actually stutter.

Keep up the good work.

Adrian