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Dr Mike Wilson is a person who stutters, husband, father of four, dentist, and entrepreneur. He’s a passionate stuttering advocate, host of the “Stutter with Confidence” podcast on YouTube, and the facilitator of a Zoom support group of people who he coaches to go out and face their fear of speaking. |
About the Author: Here’s a video by Mike on the importance of giving people who stutter the ability to make evidence-based decisions on which therapy, coaching, or peer mentorship program might suit them best.
Hello all,
Welcome to ISAD 2021!
First off I want to thank everybody at ISAD. It is SO refreshing to see a stuttering support organization that is controlled and run by people who stutter, and one which genuinely gives those who stutter a platform to share their story and their perspectives.
In terms of the subject of my video, I firmly believe that it is high time for people who stutter to finally have the information to make evidence-based decisions on who can actually help them improve their quality of life, rather than throwing arrows in the dark (not to mention a lot of time and money) hoping that maybe they will stumble upon something that is helpful, and all too often being disappointed in the results.
Of course feel free to leave any comments or thoughts below!
Let the fun begin.
Mike
Hi Mike!
I really enjoyed your video. I think this is really evolving the idea of “client-centered” therapy. I would love to see progress made on this front because speech therapy for people who stutter can make or break them.
On a side note, I’m a person who stutters who really enjoys listening to the “Stutter with Confidence” podcast! I just recently watched your episode with Dr. Barry Guitar and loved it! I can’t thank you enough for your passion and the work you are doing for the stuttering community.
Take care and stutter strong,
Jack Rodriguez
My pleasure, Jack. Thanks for your kind words.
I think that the passion that people have to help those who stutter will be the fuel to help push stuttering to a better place in the future.
Hello Mike,
Thank you for sharing your ideas about a database or website for individuals who stutter and their families to help them make informed decisions when seeking supports. I could not agree more that this is a necessary resource to aid individuals when seeking evidence-based programs and therapy.
Do you have any thoughts about how such a database or website could be advertised or how individuals who stutter and their families would learn about the resource?
Best,
Laura
It’s a good question Laura.
My thought is that anybody who cares about those who stutter (stuttering organizations, social media groups, ASHA and it’s international equivalents, speech therapists, professors of future SLPs, etc) would want to make people aware of this resource.
Hi Mike thanks for raising this topic, I think we discussed this on our podcast. It’s about getting the best possible service the person who stutters
Stephen Greene 100%.
It shouldn’t be a novel concept in 2021, but unfortunately there a ton of people and programs out there, professional and nonprofessional alike, that are raking in the money off of people who stutter and yet have little to no legitimate evidence that they are doing any real good. I really hope that finally changes as we get deeper into the 21st-century, and that PWS can finally have the information they need to make informed decisions.
Hi Mike,
Great video thank you and on one of my favourite topics.
What is success? How is success measured? Many of the “scientific” papers presented by the speech pathology professions claiming “success” are based on measurements in a controlled environment eg the clinic or at the end of an intensive course. They then use those results to gain the next round of Government grants, etc. I understand the need to measure results but measuring for example stuttered syllables per minute in the clinic or talking to the clinician on the phone is in my opinion of little value! There are successful treatment available that are difficult to measure. Because they can’t be measured doesn’t mean they don’t work! How do you measure quality of life improvements, the reduction of fear and anxiety (perhaps the SPIN survey measuring social anxiety), reduction of negative self-talk, etc. If only we could walk in the shoes of the person who stutters to gauge the success of their treatment in the real world? Maybe a tool that simulates real-world situations and monitored by researchers? eg https://asterius.federation.edu.au/scenariaid/
I love your suggestion of evaluation of available treatments by an independent organisation with no vested interest and no reputation to protect. The barrier of course is funding. How would such a venture be financed?
Regards,
Geoff
Hi Geoff,
Responding in the order that you commented:
1). I agree completely that measuring stuttered syllables in the clinic environment is pointless (especially as a gauge of improvement). Most people I know who stutter report having had a good bit of improvement in their speech when they are within the friendly confines of the therapy room with the super nice therapist, and then that everything falls apart as soon as they step back into the real world. Perhaps measuring people’s speech (before and after) when out speaking to strangers in the shops would be the closest approximation to “real life” that we could come for measuring the above-the-surface actual stuttering. Maybe a self assessed severity survey would also be useful since only the person who stutters really knows how their speech is going in ALL situations in their life.
2). Some well-established survey tools that (to my understanding) are very useful to measure the impact of stuttering on one’s quality of life are the OASES and the 4S. The SPIN survey that you mentioned sounds like it may be useful as well.
3.) With regards to funding, unless I’m missing something, I think the expenses would be very minimal. “Before and after” (and again after 6 months or a year to gauge the “stickiness” of the improvements) surveys like OASES, 4S, etc could be filled out by participants at no cost by them simply logging in a few of times and spending 30-40 minutes. With the technology of Qualtrics to gather the data, and Excel to crunch the numbers and do the calculations, the researchers could have the needed percentage change in the data in front of them with minimal effort. Someone would then need to write it up in the appropriate form. (I am not exactly sure what other hoops have to be jumped through to get it peer reviewed and published, but research happens all the time, so where there’s a will there’s definitely a way.)
Perhaps there is a particular university’s Stuttering Lab who would volunteer to offer this to programs and therapists who are confident enough in the results of their work to subject it to scientific scrutiny.
I hope that answered your questions.
be well,
Mike
Hi Mike – Thank you for pointing out the need for better information leading to more informed decision-making. I remember hearing a quote on NPR about how it takes a long time for scientific research to catch up with anecdotal evidence. As you know, my next project is sharing stories, first-hand experiences, about the impact of different types of therapies, especially on those who continue to stutter. I want to take parents into the experience rather than expecting them to wade through and make sense of evidence-based research publications (something I’ve done a lot of over the past 20 years – only to become more uncertain, confused, and disillusioned. Although I’m not a professional researcher, in addition to collecting and analyzing stories, patterns, repeated themes, I have documented data from my surveys into an excel spreadsheet and have a person experienced with scientific research reviewing and interpreting the findings. I see it as a happy medium to pure anecdote and scientific research. My intent is also to have something that is fully accessible not only to parents, but to SLP grad students and SLPs (and pediatricians and family practice doctors and voices in the world of parenting). Thanks again Mike – and thanks for sharing your story and being part of this project! The beat goes on.
Thanks Dori. Keep up your energetic and determined work to help parents make wise decisions when it comes to raising confident kids who are comfortable in their own skin.
Hi Mike,
Great video! Thanks for addressing the need to enable those who stutter with the power of an informed decision.
I agree that there needs to be a research focus on providing people who stutter with evidence based practice. Speech therapy can be expensive and not necessarily covered by some insurance plans so people deserve to be informed to make the best decisions for themselves! I am currently a first year graduate student and am taking a course on fluency disorders. I have noticed in this class, a focus on client centered therapy practices which I appreciate. I think that a research design to consider how different therapy approaches really affect a PWS while outside of the therapy session would be a good first step.
And what makes a therapy approach successful? I think the only way to answer that is by asking PWS. Because stuttering has so many internal factors and can be emotional, simply increasing fluency is not necessarily a measure of success.
Best,
Amanda
I completely agree Amanda.
As Joseph Sheehan pointed out, the most important aspect of stuttering is that below-the-surface portion of the iceberg. The only way I know to scientifically measure that aspect is to have PWS complete surveys (like OASES and 4S), before and after the help from the therapist or coach (and long after to see if the positive effects are long term). Of course by definition, these surveys are from the perspective of the PWS. In terms of the actual physical stuttering (what lies above the surface), I think that self assessed severity surveys (and also measuring out in the real world) would be most effective since the severity of stuttering in the clinical setting means absolutely nothing since (for the vast majority of us who stutter) the speech therapy techniques seem to fall apart as soon as we leave the friendly confines of the speech clinic.
Thanks to everyone who listened to and/or commented on my video (or any of the other ISAD 2021 writings/videos). It was another great ISAD year, and your engagement and support make it a continued powerful force for good in the stuttering world.
Hi Mike,
I’ll admit, I was interested in seeing what you had to say because of the phrase you used, “evidence based” decisions. You don’t often hear that phrase from anyone but SLPs, so I wondered what that meant.
I am glad you are advocating for having all the tools necessary to make good choices for people who stutter who may want therapy. There are a lot of promises out there, quick fix schemes, and 3 day courses that guarantee stuttering will stop. So many who stutter are desperate to find a “cure” and will often pay anything for it, despite no evidence, research or anecdotal, that it will or ever has worked.
Thanks,
Pam
Absolutely Pam. Whether it’s SLPs or non-SLPs, there are many people out there cashing PWS’s checks with no evidence whatsoever that they’re legitimately helping affect any positive changes (whether it be the below-the-surface or above-the-surface portion of the iceberg). As Dori Holte and Dr Courtney Byrd have pointed out, many are actually doing more harm than good.
Let’s change that.