They just do not understand us! Perhaps we also do not understand? (Grant Meredith)

About the Author: Grant Meredith lectures in Information Technology for the School of Engineering & Information Technology at Federation University Australia and is the Associate Dean of Student Retention and Success for the Faculty of Science and Technology. Grant leads the Technologies for Empowering People for Participation in Society (TEPPS) programme which aims to enable the lives of people the world over through the radical design of software and hardware solutions. Grant is an active researcher and presenter within the fields of educational equity, assertive technologies and emerging technologies. Grant is actively engaged within the stuttering world and also sits as a community representative on Speech Pathology Australia’s Ethics Board. In the stuttering world he is seen as a “triple threat” as he blocks, repeats and also prolongs.

A world that understands stuttering? Quite an interesting question to begin a conference and an article with. For this initial question implies that the world does not in general understand stuttering and needs educating. But educating to what degree and how? Does the world know more about stuttering than what we think? Is it us, the people who stutter, who also need educating? I think it is a case that the entire world, not just people who do not stutter, need some further education about understanding stuttering and in education in different forms.

If you are a person who stutters who is reading this article, think deeply about what you truly know about stuttering. Honestly think about what you know about stuttering beyond playing host to the condition yourself. For most of us who stutter I would say that yes we are experts at the lived experience of having a stutter and at least can talk about its personal effect from purely an individual level. But even between individuals there can be marked lived differences and also commonly experienced norms. The lived experience is shaped alongside other factors, such as family upbringing, social interactions, cultural factors and many other influencers. These differences of life experiences lead to such rich, interesting and often heated debates within stuttering circles around many topics, such as the value of therapy, early intervention and even levels of severity. But apart from living with a stutter, very few of us who stutter really know a lot about stuttering from a scientific view.

This lack of expertise around what it scientifically known about stuttering, current states of therapy/treatment and what research is finding, often makes us as a community of people who stutter fairly ignorant at times. We often believe that when it comes to stuttering, that we know it all. To present a different case would be to say that a person who is a paraplegic has in turn complete expert knowledge physiologically and medically about the condition, purely because they may have had an accident and has spent the last 20 years of their lives using a wheelchair for mobility. This is not the case in general, but yes they do have the expert lived experience.

Now there are some amongst our ranks who are speech pathologists who focus on stuttering and/or researchers in various areas of stuttering, who of course have more knowledge beyond the lived experience. Keep in mind that not all speech therapists have expert knowledge about stuttering themselves. But few of us take the time to try to learn more about what science actually knows about stuttering, where new validated knowledge is emerging and in fact, how academic research works. Once before a radio interview discussing a project that I was working on, I made it explicitly clear to the interviewer not to ask me any questions about stuttering, including origin and treatment. Why, you may ask? Because I honestly have little knowledge in these areas and did not want my stuttering to be any form of focus within the interview. Also I did not want to mislead the public by presenting them with uneducated and possibly unsubstantiated views about such topics.

I also have a responsibility as an academic, to discuss the evidence trail and in the area of stuttering, I am not up with all the current research. In fact I am an academic and researcher in information technology. So perhaps it is time for us all to start to learn more holistically about stuttering while looking beyond the likes of Huffington Post articles, personal blogs and YouTube “how to stop stuttering” videos. When researching stuttering, look at a wide variety of views and sources, but most importantly, look for information which is credible. At least use Google Scholar to view the abstracts of published studies and try to understand the reasons for attributed limitations of published studies. Also view the websites of credible stuttering organisations who should have up to date general information about stuttering and links to credible resources. When reviewing speech therapy or some type of speech management program, look for people who have been involved with the program/course. But not only the people who it seemingly helped. Talk to the people who the course did not seemingly work for, those who it did work for and those who may have been deterred from continuing the therapy/program. Talking to the “successful” clients and graduates of speech therapy and programs only presents you with a very biased view. Some of whom have vested financial interested in you engaging with the program and others simply wanting to spread the word of their own successes, and expecting the same results for all as a result. Talk to all these individuals about how their life and speech has changed long term, for that is where success truly lays.

It is quite easy to make a person sound fairly fluent during an environmentally controlled short intensive speech course with lots of confident building, regardless of what program/technique was used. But to maintain the fluency long term is a challenge. Of course long term success may not hinge at all on fluency or eloquent speaking. Success may be measured in part concerning gaining social confidence, part taking opportunities previously avoided, and perhaps simply asking for a coffee unaided. In fact I will openly offer a weekend to anyone who wants to visit me in Australia. You are welcome to stay in my house free and over the weekend I will coach your speech. You will become very fluent and confident. But what happens beyond Sunday night is on your shoulders.

But then we come to the general public understanding stuttering. In my opinion the public are not as uneducated as we tend to think. In fact, the general advice that they may give us, when they verbally encounter us or talk broadly about stuttering, reflects a somewhat informed societal knowledge of stuttering as a condition. This advice given to people who stutter by people who do not stutter is often somewhat aligned to methods used by established evidence-based therapies and also popular non-evidence based programs. For example:

  • Take a deep breath before talking: Some techniques to help shape and manage stuttering teach exactly this. To stop and take in a breath. Programs based around costal breathing techniques are a prime example;
  • Think about what you want to say before talking: Some techniques teach a person to mentally formulate their words before speaking;
  • Stress causes stuttering: Research shows that anxiety can aggravate the stuttering condition in some people who stutter and in turn, influencing the chances of making their speech appear more severely impacted;
  • People who stutter are shy and self-conscious: Research shows that people who stutter are more likely to be diagnosed with some form of social phobia;
  • Slowing your speech will help: Well again some techniques, at least to begin with, preach this as part of their technique to slow down the rate of speech and focus on the fluency shaping to come.

These common societal facts and assistance advices about stuttering are in fact at times quite accurate and have been built over a long span of time of interacting with people who stutter. Not out of pure ignorance. So be a little patient and understanding when offered such advice. Of course there are also many commonly placed myths about stuttering grounded with ignorance. Myths often promoted by some people who stutter. For example:

  • Children who stutter are imitating a stuttering parent or relative: But, having said “ignorance” earlier, it is known that stuttering is genetically evident in some families. If stuttering was contagious though, then we would be the speaking majority;
  • Stuttering is just a habit to break: Wow, I guess a habit a lot harder to stop than giving up smoking;
  • Telling a child that they will grow out their stuttering. Well, a lot of children do naturally recover from stuttering;
  • You stutter because you were tickled when you were a child: If so, the world would be vastly more populated with people who stutter. I would then also refrain from exposing children to clowns. But having said that, clowns are a phobia for many people.

It is so easy for us to sit back and claim to be a victim of a world that does not understand and wait for that world to change for us. What we as a community need is to be proactive and do something ourselves about it. But we need to be educated ourselves. In turn we need personal and organisational champions to lead the way. We need to work together with researchers and therapists, in order to inform their knowledge about stuttering from a lived view. When being offered advice from a member of the public, do not automatically assume that their advice is stupid and rude. In fact they are generally simply trying to assist us when they see our struggles. With a little understanding and knowledge we can all help to create, shape and educate a world which understands more and more.

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Comments

They just do not understand us! Perhaps we also do not understand? (Grant Meredith) — 31 Comments

  1. Great article! As a speech-language pathology graduate student, I had several questions. First, what factors can be attributed to the difficulty of maintaining fluency after popular intervention programs? Can these programs, that claim to be successful in reducing stuttering, be shaped to be genuinely effective in the long-term? Finally, how can the SLP community work with PWS and fluency researchers to provide fluency education and understanding? Thank you!

    • Thanks Chanazig, very interesting questions that I will answer via a long history of pure observation. I know there have been studies on these though.I think difficulties with maintaining fluency after program like speech therapy and the McGuire Program for examples hinge a lot on ongoing motivation. After course there is a realisation of the amount of focus that is lifelong required to maintain the gained levels which where gained themselves in a controlled and supportive environment. Some people I have met stopped working on their speech post-course due to an awakening that perhaps their stuttering was not that huge an impact on their lives after all and that they needed to take more pro-active steps in their life progressions. Some people are after a quick fix and realise that these programs are not. Others simply lack the dedication needed to focus on techniques and control. For some perhaps new found eloquency and fluency are confronting and perhaps some retreat back into their comfort zones? To be honest there would be many reasons but I think most harp back in some fashion to motivation of some form. I think programs can be shaped to help with the post-course attrition rate. But need to think a lot more about this. Multi-disciplinary teams are required to deal with not just the mechanics of speech alone. I think SLPs can help educate clients around the rigour involved with evidence-based practises, why new techniques cannot just be rolled out without trials, discuss where the research evidence trails are leading and help discuss the ethics of what you do as a professional. SLPs also need to engage closely with PWS and organisations in terms of advocacy, listening to personal narratives and advising. PWS need to keep in mind that SLPs have more conditions that just stuttering to deal with also.

  2. Hi Grant

    I agree completely when you said…..”we need to be educated ourselves. In turn we need personal and organisational champions to lead the way. We need to work together with researchers and therapists, in order to inform their knowledge about stuttering from a lived view.”
    As someone who has tried to be a personal and organisational champion may I ask what does the Australian Speak Easy Association (ASEA) need to do to encourage you to support us? What stops you from taking advantage of the information and conferences provided by the ASEA?

    I would like to suggest that after David (above) has spent time with you he might like to spend time with me and the ASEA 🙂

    Mark Irwin (ASEA National President)

    • Hello Mark, Must catch up as I have not seen you for ages. I am always open to support the ASEA in any form and have only missed the last couple of conferences due to time conflicts. From a support view the ASEA cannot really offer me a lot because my speech is of zero problem to me. It does not affect any part of my life in a negative fashion. But I love to help PWS of course and try to give back as much as possible. In some ways Mark because of this it is hard for me to fit into some Australian stuttering groups well. At almost every ASEA conference I have been to I have been pulled up at some point from an old guard who has tried to correct my speech. Even upon registration one day this happened and I took it in my stride. But I am happy to mentor, advise and create tools for PWS. I often get McGuire grads who I have never met contacting me to discuss stuttering and in some cases just needing a confidence boost. Also being in country Victoria as far as I know there is not a group close to me to join.

      David will need to get his visa first to visit lol.

  3. Brilliant article, Grant. I think we need to avoid making the stuttering experience a me-vs-them and more into exactly what you describe, a let’s-work-together experience/community.

    • Thanks brother Rossi and we need to take charge of educating people and be a little more understanding ourselves of how the world approaches us in order to influence any form of change

  4. Enjoyed reading your paper–As you may remember work as a mental health professional. Majority of the patients I have therapy sessions with have anxiety and depression. I use Mayo Clinic as a resource.
    I checked mayo clinic website for stuttering–Check it out its really good.
    Hope to see you again
    Michael

    • Must share a coffee again soon Michael and thanks. Yes the baggage built around the problems with speech mechanic defects often also needs treating, in some cases much more than the speech itself

  5. As a speech pathology graduate student reading this article was very eye opening. Getting a different perspective on a lot of the topics you talked about in your article made me think differently about stuttering as a whole. As a future SLP I aspire to help spread awareness about stuttering and make everyone more aware of what stuttering is. The fact that some people think that tickling your child can cause stuttering is mind blowing to me. Everyone tickles their child how could this be the root of the issue? Some people just need more information and perspective about what stuttering is and how people cope with it. Overall great article. Thank you for giving me another perspective on stuttering.

    • Thanks Mary, the problem with the WWW is freedom of speech and it being unregulated. A double edged sword and you have to be skilled to be able to sift the rubbish from the facts. But rubbish often quickly propagates and becomes more established non-professionally. Even academically this is happening due to predatory journals publishing anything for money and more often than not without peer review. Not all “peer” reviewed journals are equal

  6. Hi Grant!

    I’m a graduate student studying speech-language pathology! I really enjoyed your paper and I think you bring a unique perspective to the issue of “understanding” stuttering. I put quotation marks around understanding because even as a graduate student with a full class dedicated to fluency disorders, I still find myself having a hard time being able to explain or define stuttering. I am not a person who stutters so of course I can’t attest to any “lived experience” as you pointed out, but I was wondering if you had any advice for an SLP on educating future clients about the more scientific/etiological standpoint of stuttering? Or more specifically, if you were meeting an SLP for the first time, what information about stuttering would you want to know?

    Thanks!
    Grace

    • Great to hear from you Grace, tough question! I am Australian so I love blatant facts. I would think an solid, ground level understanding of what stuttering is and is research-wise accepted to be caused by. Then the way to address it in therapy and the likely outcomes from that for both speech and lifestyle. Then the amount of dedication required to achieve such results and the fact that there is no known cure (yet). Information about peer support options and tie in with other professional support services such as psychologists for issues that therapy alone cannot address well. Some information about finding and assessing information about stuttering on the WWW including the dangers of unethical opportunistic people/programs/websites.

  7. Hello Grant,

    I liked your perspective of unifying PWS, with people who don’t stutter (PWDS), as well as with those highly educated about stuttering. There are certain aspects from each point of view that are unique. For example, a person who does not stutter does not have lived experience. I agree that a collaboration of a PWS with a PWDS along with an SLP would be very useful for educational purposes. Spreading awareness of what stuttering is as well as the feelings and emotions one may have as a PWS is something I aspire to do as I pursue my degree in Speech-Language Pathology. I agree that there needs to be an understanding on both sides, especially for awareness to spread and for people to become educated about stuttering. Thank you for sharing your thoughts!

    Haley

    • Thanks for the feedback Haley. Essentially their needs to be a natural holy trinity of PWS, SLPs and related academics all with a solid understanding of each other’s experiences and aims. Looking forward to hearing about you becoming a great SLP.

  8. Hi Grant,

    Thank you for taking the time to write this piece and share your thoughts. I am an SLP graduate student and am currently taking Idaho State University’s course on fluency disorders. I wonder if offering research articles to my future clients who stutter, articles that I would use to help guide their treatment, would be helpful to them. I’m sure it is all on an individual basis and I would just have to ask but I know I have more access to research articles because of my membership to associations of our field than a person without these affiliations.

    I have a chronic illness and I try to read research articles and go to my neurologist with educated questions. At first, it caused more confusion than anything, and I felt like it created a sort of power struggle that didn’t seem to be productive. With practice and learning more about a field that I am not an expert in (neurology), I can understand the articles better and communicate with my doctor more clearly and with less of a sense of struggle. So that’s what I’m thinking would be good for people to hear if they are just diving into an area of research they have only personal experience in – just keep reading and asking questions, it gets easier with time and practice.

    Thanks again and I hope you get some visitors! I wish I could visit ha ha!

    -Brittany

    • Thanks for the reply and backstory Brittany. I think perhaps a nice little research summary of the current state of play would be interesting to give to clients to give them a sense of what is being found. Or actually at least some interesting abstracts as long as from professionally supported and recognised journals and conferences. At least the abstracts can be freely used. Some clients would not be able to read and comprehend well some full articles due to the language and science. It is also important for professionals to work on how they communicate conditions and findings. Often we use strategies for example of when you are describing your own research. For example articulate your study into a form of a 30 second elevator pitch that anyone will understand quickly and first time. Then develop a 3 minute pitch with a little more detail. Finally a 10-15 minute (or longer) conference pitch.

      Welcome to visit any time Brittany

  9. Hey Grant,

    Thanks so much for this paper. While there is much to respond to and to engage in dialog about, I would like to first simply say Yes: we who stutter also need to understand stuttering, both the lived experiences of other PWS and also the research and the facts. Integral to A World that Understands Stuttering are PWS who understand stuttering. We spoke about this when we called for papers, but you have explained and clarified this point superbly. Thank you.

    Responding to Brittany’s question about offering research articles to PWS, I would answer a resounding Yes, and your guidance on how to distill the information is valuable. Part of my lived experience is that educating myself has made all the difference in how I manage my life and my stuttering, and enables me to occasionally pay it forward and help others.

    Lastly, to your point about a need for a “natural holy trinity of PWS, SLPs and related academics all with a solid understanding of each other’s experiences and aims”, that is what we are aiming for at the ICA/IFA/ISA joint conference in Hiroshima in July 2018. Your presence, and a presentation from you, will be critical in furthering that goal.

    Thanks a lot for sharing your wisdom and experience.

    Hanan

  10. hi,
    I really like your idea that SLP’s should need to learn about the “living” experience from the PWS, and not just learn from an academic point of view how to cure stuttering.
    As an SLP graduate student, I think it will be very enlightening to the SLP’s, and very empowering to the PWS. the relationship between therapist and client will be improved. it will not only be one-way, that the SLP is educating the client. the PWS will have contributed to the SLP’s knowledge as well.
    I am not sure I fully understand the reason to educate the PWS with the scientific background such as from a physiologic, neurogenic, environmental etiologies of the stutter. Knowledge is power. Do you feel the knowledge will give the PWS more confidence?

    Kindly respond
    Mr. Lederfeind

    • Nice to hear from you Chaim, I think synthesising the current state of research for PWS is helpful in them understanding the state of current play and the fact that the world is seriously focusing on condition. It also helps to show that the profession and its understanding of stuttering is moving ahead, despite PWS on social media loudly stating that knowlegde of stuttering has not increased within the last 50 years plus. But for the general PWS it needs to be synthesised. PWS also need to udnerstand how the profession is bound to work within ethical frameworks and the fact that ethical research with merit takes time to be conducted

  11. Hi Grant,

    Thank you for providing a meaningful perspective and eye-opening comments on the “understanding” stuttering through the wisdom you have gained through life experiences. I am in my final year of graduate school at the University of Minnesota Duluth studying speech-language pathology in which I am currently in an advanced fluency course. As a future speech-language pathologist, I felt many points from your article are worthwhile to me to hold and provide to my future clients who stutter.

    I especially found your topics on educating clients who stutter a both a scientific view of stuttering along with the social and emotional aspects quite interesting. As I learn more about fluency disorders, I crave the knowledge from both a clinical, or “scientific”, standpoint and from a feelings/emotions standpoint. Do you feel that in your initial therapy experiences, if you would have learned more of the black/white areas of stuttering (“origin” and “treatment”), that would have helped you as you went through therapy? Do you think this knowledge ultimately would help reach goals, such as using fluency shaping techniques? I am not a PWS, nor can I ever speak for a PWS or understand exactly, however I feel as though learning about stuttering through a clinical mindset along with the personal effects of it would be meaningful for me as I would enter therapy. How do you think learning more detailed scientific facts on fluency would affect a PWS feeling/emotions when relating that information to themselves?

    These questions came to mind as you described how you did not want to mislead the public by presenting them with uneducated and possibly unsubstantiated views, and how you didn’t want to answer questions regarding the origin and treatment because of the lack of knowledge. I would not want my future clients to feel this like you have. I also want to provide them with the most meaningful and positive information possible as they participate in fluency therapy to help improve their quality of life on many levels.

    Thank you again. Great great article.
    Haley

  12. Hey Haley, great feedback thank you. I love how you crave more knowledge. Often a problem when conducting a literature review and you just keep finding more and reading more. I often try to find time every week to kick back in the chair and spend a few hours just trawling through Google Scholar. I actually knew very little about stuttering at all when I first looked at therapy options. My knowledge was restricted to what I saw on TV. I think having a little more general knowledge would have helped and especially about probable outcomes. I think the facts are important is presented correctly and are informed. Even some simple guides about how to trawl the WWW for fact apart from opinion.

  13. Hi Grant,

    This was a very insightful article. As a speech-language pathology graduate student, I enjoyed reading about another perspective on what it means to “understand” stuttering. I particularly liked the phrase, “expert lived experience.” It will be important as a speech-language pathologist to listen to clients who stutter to learn how their speech affects them, but it will also be vital for them to listen to the knowledge I may have or can gather on the scientific view. Thank you for your advice on searching for credible information and ways to avoid bias.

    -Amber

  14. Hi Grant,

    Thank you for sharing your experience and perspective with us. I think you make a great point about education through scholarly exposures, and social and emotional experiences. As an SLP graduate student, I feel as your article is of value not only to PWS and clinicians, but to the community as well.
    Reading your article, I had a few questions come to mind. One of the clinician’s primary roles is to provide education on stuttering. How would you view your clinician in terms of counseling? Should the SLP play an active role in counseling? Also, how can SLPs modify therapy to help clients transfer their skills from a clinical setting to a more naturalistic setting, and maintain them in that natural environment?
    Thank you so much for sharing your expertise on your lived experiences!
    Looking forward to hearing from you,
    Nouhad

    • Thank you Nouhad for your reply & questions. I think SLPs can counsel to a point of general education, guidance, the role research plays and the likely outcomes of when a PWS dedicated themselves to therapy. But in terms of pastoral support that is where support groups and trained professionals come to play. I see a bright future where different professionals are part of a support network of which SLPs are part of. SLPs are cannot and are not the only part of the solution. Translating long term the successes gained from therapy and intensive courses plague evidence-based therapy and other programs alike. I think a good SLP will encourage the PWS to challenge themselves outside of the clinic, make small achievable goals, understand that perfection is impossible and then how to carry on strongly. That is where support groups come into play and other professionals. The PWS has to truly want to embrace therapy and commit…that is also key.

  15. I truly enjoyed reading this article! As a graduate student in speech language pathology, it is our responsibility to bring awareness and education to the community on various communication disorders. What role or what type of information would you suggest professionals in this field focus on when educating the community?

    • Great question Mmwagner. I suggest professionals focus on the facts in a understandable way and make the world realise how problematic stuttering can be to the individual hosting it beyond the pure mechanics of speech. Quality of life and lost opportunities should be key messages focused on PWS, their families, their communities and the world as a whole.

  16. This is my favorite article from this conference and I really am taking your message to heart. I am not a person who stutters, but I liked the idea that even people who stutter need to learn more about stuttering. It’s so easy to assume we know everything about something after we personally experience it. But out experience is just that- an experience. And there is so much more perspective to gain than just our own. And as a speech-language pathologist grad student, I learned that one of my main goals in therapy should be to help clients learn more about the specific language or speech impairment they present with.
    This article also inspired me to develop empathy. It’s so easy for me, as a person who doesn’t stutter, to be quick to offer solutions, techniques, and the things I’ve learned in graduate school, to people who come in the clinic. But every situation is different and every person who walks in our office is unique. Instead of listing off what they should do to “fix” themselves and “be cured”, we should take time to learn their needs and find out what they’re looking for.
    Thank you for writing such an informative and inspiring article. I learned so much.

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