Thursday, February 12, 2015

What Does This Even Mean?

Most discussions about the uncertainty and disagreement that exists in the field of treatment for children who stutter take place between professionals.  Fortunately, with existing technology, parents can now access these conversations.  I think it’s important to take advantage of these opened doors in order to gain the necessary context needed to make safe and educated decisions around treatment for children.    

Recently I listened to Peter Reitzes (StutterTalk podcast 494) interview Dr. Craig Coleman, a speech therapist and professor at Marshall University and also a board-certified specialist in fluency disorders.  They were challenging a colleague’s YouTube videos on response contingency therapy i.e. Lidcombe.  In her videos, Carrie Clark promotes response contingency therapy as “the best” therapy for preschoolers according to evidence-based research. 

Coleman rightfully questions this evidence.  He points out that we should not confuse “most data” with “best data” and I think that’s brilliant.  He questions what the study actually measures and its value to the well-being of the child.  Coleman defines disfluencies as a disruption in the flow of speech and stuttering as disfluencies AND physical tension, secondary behaviors, negative reaction, impact on communication, etc…I see this as one of the better descriptions of these terms.  The physical tension, secondary behaviors, negative reaction, and impact on communication, self-esteem and long-term well-being can create a far greater handicap for children who stutter, and yet the primary focus continues to be the disfluencies.  In fact, I believe that the focus on disfluencies often contributes to the manifestation of the stuttering behavior, especially with young children.

Coleman refers to a survey he conducted where 96% of speech therapists defined stuttering as disfluencies only.  He points out that “how you define the term is also going to be how you assess it and treat it.”  So it’s safe to bet that the majority of speech therapists who treat children are still focusing primarily on getting rid of the disfluencies.  The tide is beginning to turn, but not quickly enough!  Following is an example of what many parents on my Voice Unearthed Facebook are experiencing:

"Tommy" received his school-based speech progress report today and reading the remarks on it leave me with all sorts of mixed emotions. To highlight some portions of it, 'goals: Tommy will increase control and understanding of disfluent behavior. Tommy will develop controls of breathing and voice to be more fluent.' Overall comments: 'Tommy's articulation is intelligible and accurate when he slows down his speech and concentrates on controlling his fluency. He continues to require prompting to remember to utilize his strategies for fluency and secondary behaviors seem to increase with his excitement'.

I wish I could say this is the exception but it is not.  Coleman also says it’s important to match the skill set of the therapist to the individual needs of the child and their family.  What does that even mean?   Therapists do have different skill sets, but what are they and which one matches up with your child?  We can only find out through trial and error and sadly that’s where the damage can be done.  

ASHA wants us to put our faith in their system of certification and yet they themselves report, in a 2010 study, through the National Center for Evidence Based Practice for Preschoolers, that 

"The current state of evidence does not provide meaningful information for clinicians’ attempt to decide between direct (Lidcombe or speech tools) and indirect therapy."

At the same time Coleman states that if you look at all the different models – Lidcombe, Palin Centre, Demands and Capacities – that “all the results are very good.”  Based on what – measures of disfluencies?    
In conclusion…

1)      1)  There is no meaningful information for therapists to decide between direct and indirect therapy for preschoolers,
2)      2)  most speech therapists define stuttering inaccurately which lends itself to inappropriate treatments,
3)      3)  and studies that are suppose to provide evidence of efficacy are measuring the wrong data in the first place.  

And yet Reitzes and Colman enthusiastically agree when Clark says “If you are worried, go ask a speech therapist.”  I don’t think I’m in any hurry…  

(Don’t get me wrong -- I would say that speech therapists are one of the most dedicated and compassionate groups of professionals I’ve ever come across.  Many have been convinced by the powers that be that there is good evidence supporting the treatment options they are trained to provide.  As professionals, they believe they are ethically and morally obligated to abide by those options.  They put their faith in what they’ve been taught just as we put our faith in them.)

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