Monday, February 15, 2010

Early intervention effectively preventing stuttering???

Jane Fraser writes:
“We have long known that stuttering runs in families,” says Fraser. “We want to emphasize that a genetic predisposition for stuttering does not mean a person will have a lifelong problem. Early treatment in young children can effectively prevent stuttering.”
The statement "Early treatment in young children can effectively prevent stuttering." is clearly misleading. Neither the outcome data supports this nor common sense (let alone theoretical considerations). Again and again and again and again, I point to the only long-term outcome study of the Lidcombe treatment which shows despite methodological weaknesses that the recovery rate is not much better than the natural one. But no-one ever quotes this study. Why not?

And with the discovery of the mutant genes for a subtype of stutterer as I wrote in my reflections, it is
impossible to effectively prevent stuttering except if you are able to replace the mutant gene or provide the body with the corresponding proteins.

Here is what Ann Packman, the driving force between the Lidcombe early intervention program together with Mark Onslow, writes on Lidcombe:
Interestingly, however, long-term follow up indicates that some children may start to stutter again many years after treatment with the Lidcombe Program has ended (Jones et al.,2008). This suggests that recovery is not necessarily complete or self-regulated after treatment with the Lidcombe Program.
From a behavioural perspective, it seems that stuttering is brought under environmental control during the treatment and remains so for some years. However, the treatment does not—cannot—remove the initial condition (the underlying neural deficit). Rather, the treatment promotes compensatory neural re-organization which we now know may not be permanent.

But even her reference to brain plasticity is probably illusionary. Lidcombe changes most learned behaviours and cognitive beliefs, which might well not resist the dragging forces of the black hole of the neurobiological deficit.

12 comments:

Norbert @ BSA said...

BSA says exactly the same as the SFA; we are convinced that this is right. So do the great majority of therapists and researchers of whatever camp.

When it comes to comparing recovery figures between children who do and children who do not receive therapy, your critique appears based on the assumption that every therapist will treat every child that comes through their door, and that children who will recover naturally are just as likely to seek help as children who will not - in effect assuming that those children whom therapists eventually take on as clients are just as likely to have the same high natural recovery rate. That is of course nonsense.

Susan Block is talking about 'some children' – but even if 'some children' after Lidcombe revert to stammering some years after therapy, it is self-evident to me that it is better for them to be able to develop their language skills and their self-image as competent communicators during those early years without stammering.

You say that "… with the discovery of the mutant genes for a subtype of stutterer as I wrote in my reflections, it is impossible to effectively prevent stuttering except if you are able to replace the mutant gene or provide the body with the corresponding proteins."

Well, that's a death-knell for any therapy. What should we then do with these children – do a genetic test and then send them home? "No hope for you, mate, until gene therapy kicks in?"

I haven't yet seen an explanation of how precisely this gene causes the child to stammer. If it were true that it is "impossible to effectively prevent stuttering" the question is: where is the evidence that having this gene is *guaranteed* to make one stammer? Wasn't there at least one non-stammering person in the control group who has these genetic markers and who doesn't stammer? What happened to him, I wonder?

Anonymous said...

Hi Tom

Your view on this seems rather radical. I'm not an expert and the following is just an anecdotal impression of my son's previous stuttering. My son started stuttering (with sudden onset, quickly turning into severe blocks and awareness) at age 3, I taught him the fluency techniques I myself use, and today he enjoys arguing and debating in class (he is now 17). He seems to have a dormant stutter, and says that he is unable to tell jokes, but is fluent otherwise. This fluency probably helped him in developing a great deal of confidence. I am convinced that he would have become a severe stutterer had I not intervened. Admittedly it may still return when he's older, but I doubt whether it will ever become severe thanks to his confidence. Regards, Peter Louw

Mark B. said...

Peter

It's good to hear about your son's relative success with his speech. The problem is, as you say, the anecdote thing. And if you son is unable to tell jokes, they I wouldn't call his stutter "dormant." Generally under control, yes, but if he has to avoid speaking to avoid stuttering, then it's not dormant. Obviously much better than a severe stutter ;-) - just not dormant.

If the kind of thing you did for your son works as a general rule, then it should be easily shown in studies. It is possible that it does work - for a minority of children. If so, it would be hard to prove with studies that don't sort out those particular children ahead of time and focus on them.

Mark B. said...

"BSA says exactly the same as the SFA; we are convinced that this is right. So do the great majority of therapists and researchers of whatever camp."

And so the lemming go, marching over the edge of the cliff. The fields of stuttering research and therapy have not exactly covered themselves in glory over the past century.

"That is of course nonsense."

Assertion - where's the data?

"it is self-evident to me..."

That's just what this field needs.

"Wasn't there at least one non-stammering person in the control group who has these genetic markers and who doesn't stammer? What happened to him, I wonder?"

It's called penetrance. You learn about it in an introductory genetics class.

Norbert @ BSA said...

Sorry, previous comment wasn't quite done...

Naturally, it is an assertion. You see, I'm not a scientist, I don't work in academia. But I have given my reasons for making this assertions in another comment. Where's Tom's data that supports his assumption that there is no bias?

"And so the lemming go, marching over the edge of the cliff. The fields of stuttering research and therapy have not exactly covered themselves in glory over the past century."

I wouldn't know. I'm neither researcher nor therapist, just someone who stammers. Where's your evidence for that? Sounds like just an assertion to me.

""it is self-evident to me..."

That's just what this field needs"

Now, really, that's rather a bit of dishonest quoting, don't you think? Would you think it NOT self-evident that it is better for children "to be able to develop their language skills and their self-image as competent communicators" without stammering?

"It's called penetrance. You learn about it in an introductory genetics class." Thanks, though it was a rhetorical question. Never mind. My point was, and I made this clear in another comment, that Tom sounds very definite that having this gene means you WILL stammer when you actually make it clearer on the blog how little we actually still know about what this does.

Ora said...

Tom - You wrote "it is impossible to effectively prevent stuttering except if you are able to replace the mutant gene or provide the body with the corresponding proteins.

How can you support this statement? What's your evidence? You yourself say that good studies have not yet been done.

Your claim that "it's impossible" is even more extreme than the claim that "early intervention works".

It's very hard to prove an impossibility in science. (In mathematics yes, in science no.) Even if we were to accept that there's no good evidence (yet) that early intervention works, we can't say that it's impossible. Maybe it does work and the right studies haven't been done. Or maybe some yet-to-be-developed early intervention therapy will work. Your claim that "it's impossible" is insupportable.

Anonymous said...

Speech Therapists and Organizations like the SFA and professional boards of the self help groups always preach "early intervention can prevent stuttering".

When the Genetic's news broke recently, Jane Fraser indicated in an ABC News article that she always believed it was genetic, and because her father stuttered, he had she and her siblings go through "preventative therapy", and because of that, she was spared stuttering. As well, the article seemed to imply that Ms. Fraser's felt her children and grand children had also been affected by "preventative therapy" to the effect that none of her siblings, her children, or her grand children stuttered as a result of "preventative therapy".

Therapist's or organization's that claim to provide therapy that "prevents stuttering" have a "I can do miracles" complex.

Nature's natural course takes care of 80% of the "cures" occuring.

Will the Therapist's and organizations that claim "Preventative therapy" works by saving kids from stuttering take ANY credit for the FAILURE of the therapy or therapist when more severe stuttering develops and persists?

Or is it still the childs and parents fault?

Anonymous said...

Anon - if you get a therapist telling you it's the child's or parent's fault that EI isn't working you've found a bad therapist. Simples.

Can you give me a source where someone from the SFA has said that failure in EI means that the child or the parents are at fault? I'd be most interested.

Anonymous said...

"Anon - if you get a therapist telling you it's the child's or parent's fault that EI isn't working you've found a bad therapist. Simples."
Agreed! :)

(Now does this mess with your world view of speech therapists as evil entities that are in it for the money and glamour *please note sarcastic use of glamour*?)

Anonymous said...

I read a newspaper story in the Philadelphia Inquirer that Mrs. Fraser had a 3 year old grandson who stuttered and she spent time reading a book of rhymes with him a lot and his stuttering stopped. By doing this she changed the way her grandson's brain was.

I wonder what book she was reading?

Is this a new kind of preventative therapy?

Thanks!

Anonymous said...

Reading a book with a lot of rhymes in it has features of syllable-timed speech - relates to smoothing out the stress patterns in speech (there's a theory out there that proposes that stuttering occurs when syllables of different stresses are initiated in speech).

Anonymous said...

Has the theory been around a long time? Has there been a long term study done regarding the efficacy of her theory? Is this the type of therapy her father used with her to prevent her from stuttering like him and that she used with her children to keep them from the struggle of stuttering like her dad? Why don't more therapists like Mrs. Fraser use this therapy?

Reading a book of rhymes a number of times to CWS is a simple enough thing to do to stop and prevent stuttering in children. If this is a cure, all CWS would be helped.

Does the Stuttering Association have the book for sale? Lots of parents could use it to help their young ones stop stuttering.