Monday, February 15, 2010

Responding to Norbert's /BSA's stance on early intervention

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.
I do not care if the great majority of therapists and researchers think that. Science is not done by majority voting. Let me point out that no-one understood that the statistics of the Lidcombe study was flawed except myself: that's not a sign of scientific greatness of the field. Except Prof Ingham and a colleague who has re-run and confirmed my results with a computer simulation. Convince me by counter-argument not by authority.
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.
How do you know that? Some stutter for months or years and suddenly recover. There is no good empirical evidence on this issue. So taking the assumption that there is no bias is the most reasonable here because it is the most conservative one. I have also shown that if the natural recovery is lower, the statistical error is actually greater.
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 and Ann Packmann are strengthening my point. Early intervention does not prevent stuttering, precisely because those kids relapse. And on top, they were not able to contact many other kids who might also have relapsed. I say: Read the article.
What is self-evident to you, is also self-evident to me. I have never said that early intervention cannot potential help children who stutter. Yes, being with less (and I don't believe the without) stuttering may well help tremendously, and that's what you should write. Writing it can "prevent stuttering" means "stuttering is gone and never comes back again".
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?"
Norbert, with which fictitious person are you debating? ;-) I have never said this. I said that the discovery shows the very clear limits that any intervention will have, because they cannot change the gene or add the needed protein, or cannot undo the damage done in a crucial period of development. The treatments can only be behaviourally and cognitively to minimize the effect.
If you are honest, you have to say to the carriers of those genes: Look you will have this for the rest of your life, your best option is therapy to minimize the effects. Saying it prevents stuttering is misleading and raising false hopes.
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?
No-one knows exactly how it works, but it does work. I cannot understand how you can think what you think. But it seems that some brains think that way! ;-) Just because I do not know how you can think the way you think, does not mean that your way of thinking does not exist. I do not know what happens to the one or more who are carriers and do not stutter. He might well have genes that protect him from the protein abnormality. More research is needed, and most likely already known. But cannot be made public because they want to publish. But once such a carrier stutters, it's highly likely that it's from the gene.

Again, these brains are marked for life (unless one intervenes on the gene/protein level). They have a neurobiological deficit, i.e. a stuttering brain. The best scenario possible is a behavioural and cognitive training to minimize the effect.


Norbert @ BSA said...

Let's just go back to where this argument started.

In a previous thread you criticised Jane Fraser for saying that Early Intervention (EI) can prevent stuttering. You then quoted the Packman research about how *some* children relapse after Lidcombe therapy as proof that what she said was incorrect. This is either a strawman or you seem not to have grasped that all we are saying is that EI *can* prevent stuttering. It's not a guarantee, and no-one has ever said it was a guarantee.

I also picked you up on your assumption that there is no bias in terms of recovery for children who are accessing therapy. I still think you are unreasonable to assume that and so, naturally, you have not convinced me. I, however, have no need to convince you. You ask me how I "know that". I know that because I know from talking to many SLTs how therapy in this country works. I know that because we have collected referral data for many hundreds of children where the majority are put on 'advice and review' i.e. wait and see what happens without therapy. I know that when children are being referred, therapists are making a risk assessment about whether to spend scarce resources on intervention or whether to see if the stammer will resolve of its own accord. I know there simply aren't the resources to ensure that every child gets therapy and that a large number of children are on waiting lists and that for all those reasons those who would recover anyway will have a good chance to do so before they even get near the therapy experience.

So I disagree that it's reasonable to assume there is no bias. The actual practice does not bear that out.

You then went on to make assertions such as "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."
And I naturally picked you up on that, because in a previous post, Mark Bulger states that

"the genes found probably contribute to a small fraction of stuttering worldwide. *The manner by which the proteins produced by these genes affect speech is unknown*, but a search for *a possible* biological mechanism for the origin of stuttering in some cases can now be begun. *Not all people who get these gene variants become stutterers*, and only a small number of stutterers in this study have these gene variants. This condition is very common in such conditions, and is to be expected: stuttering is not a single, simple genetic trait. This study says nothing about possible non-genetic causes of stuttering, and *does not rule out significant non-genetic influences on cases in which a genetic predisposition is present*"(in all cases my own emphasis), all of which introduces a note of uncertainty that is refreshing and certainly not evident in what you were saying.

It's all very mysterious and we know so very little, but it's good to know that you feel free to speculate. Let me therefore speculate a little as well:

EI is not something medical or magical that's 'done' to the child. EI is something through which therapists can aid the child in their natural recovery. Natural recovery can mean either a normal recovery which may or may not have happened in any case; or it can mean helping the child to develop ways in which they can circumvent the restrictions imposed by nature. I believe (I haven't got access to an academic library and I'd quite like to go home soon, but I am sure someone can help me out here) there has recently been some research indicating that children who have recovered from dysfluency can still show dysfluent brain activation patterns. Somehow, with these abnormal brain activation patters, they can produce fluent speech.

But guess what – I don't *know* these things; I *know* this is speculation, in the same way that you apparently *know* what Jane Fraser or the BSA mean when we say that EI can prevent stammering.

Stan said...

The therapies offered at SFA sponsored workshops are primarily based in Fluency Training/Shaping Techniques, Stuttering Modification Techniques and most recently,Cognitive Approach to Parent/Child Interaction. The Lidcombe is not really even mentioned as a SFA endorsed therapy in the materials out there.

Tom Weidig said...

OK. I just talked about Lidcombe treatment because it is the only one where long-term data, even though a bit doggy, exists.