First off, I am so thrilled to have shared in the King’s journey and all the Oscars that went along with it. When David Seidler won, Eli yelled out "that means I won too!" He didn’t stop grinning for hours…so congratulations to all of you out there who stutter and special thanks to David Seidler and the amazing actors, director, producers, etc… who so beautifully raised the awareness level and understanding around this mysterious condition. We are forever grateful! (I know that someone who is reading this is connected with Mr. Seidler – and I would love it if you could forward that message on to him! Thank you.)
Now for today’s message…My mission is to help both parents and speech therapists understand the risks that we take when we imbue children with the expectation of using speech tools meant to make talking easier and to help them make fewer speech errors. The understanding is that this practice stems from evidence-based research. The professional entities supporting speech therapists and the speech therapists themselves say that they are "ethically obliged" to abide by what is considered "best practice" stemming from evidence-based research.
At first blush, the logic behind this approach seemed solid and we enthusiastically embraced it as the primary focus of Eli’s therapy. As his struggle progressed from mild to moderate to severe, I began to want a better understanding as to where this approach came from and why it wasn't working for Eli. As I started my research, the solid logic I saw at first blush began to liquefy. By the time I finished researching and moved on to writing the book (due out this spring), that solid logic not only liquefied, but completely evaporated. So how did this come to be considered "best practice?" Here is what happens (keep in mind, I have been writing grants for the past 20 years):
- Researchers depend on grants for funding.
- Entities that give out these grants demand stated goals with measurable results.
- If the long-term goal is for a person to stutter less or not at all, the obvious behavior to track and measure is percent of syllables stuttered (%SS).
- %SS is a relatively easy thing to measure and relatively easy to achieve – in the short run.
- Continued funding is dependent on short-term reports of achieved measurable results.
Our quest for fewer %SS has inadvertently put us on a path strewn with risks that far outweigh anything that can be possibly gained from this focus. My research also uncovered the fact that the vast majority of evidence is labeled "preliminary, emerging, promising, etc…" because:
- The research has been done on adults, not on children.
- The sample size of those being studied is deemed statistically insignificant.
- The research is most often limited to pre-treatment and immediate post-treatment measures, which tells us nothing about the subjects’ ability to maintain their effort in the long-run. In fact,
- Research that has reached beyond immediate post-treatment measures has conveyed that most subjects who showed gains reverted back to their previous level of disfluencies, or became even more disfluent.
There are other therapy components not focused on %SS, but the focus on using speech tools far outweighs other components because it is seductively and misleadingly successful and easy to measure. Eli was able to perform well in the clinic setting (I was continually told that he was doing great) and so we assumed that he just needed to practice more. But what else was going on as we all feverishly focused on %SS?
- He increasingly choose silence over speaking up
- He acknowledges that he felt shame and embarrassment because he was not able to do what was expected of him.
- His life was permeated with a sense of failure when he was unable to sustain the effort he has put forth in the clinic setting.
- He was unable to genuinely engage in the world around him because he was so fearful, worried, and trying so hard not to stutter.
- His fear and shame became so encompassing that he grew increasingly depressed and withdrawn and even experienced debilitating sleep issues.
- When he did speak, he had started to twist his chin to his shoulder and growl in order to get a word out.
- In the short-run (the clinic setting) he was able to lower his %SS, but in the long run, his stuttering behavior went from mild to moderate to severe.
When he was nine, we stopped focusing on getting him to change the moment of stutter and started focusing energy on keeping him talking and keeping talking fun (see previous posts for more detail). It was a covert operation - he thought the speech therapist was some old guy with a bunch of horses and a bum knee, and yet his struggle started to melt away. Within three months, the chin to shoulder twist was gone. Over the period of a couple of years, the layers of anxiety he had amassed started to melt away. He began talking more, engaging more, and slowly became more self-confident.
Edward Conture, professor and director of graduate studies, Department of Hearing and Speech Sciences, Vanderbilt University, asks a profound question: "Does the life of an individual who stutters become easier, more enjoyable, and so forth as a result of our treatments?"* This is a very good question -- in fact I think it is the most important question that can be asked. The stated goal for reserach and practice should be to make the person who stutters life easier and more enjoyable -- because what's the point if it doesn't? (Please remember that I am speaking for children, not for adults, who stutter.)
Today, at age 14, Eli still stutters, but as we keep our eye on the big picture instead of the hatch marks of %SS, his struggle continues to fade. His life is more enjoyable and he is happier. We don’t know where it will end up, but we are grateful we got him back. Thanks for your interest. Keep them talking and keep talking fun!
*Stuttering Research and Practice: Bridging the Gap