What causes some people to stutter? It's often believed that trauma or anxiety is the reason, but world-first research has found a genetic link to stuttering, allowing for life-changing early intervention.
What causes some people to stutter? It's often believed that trauma or anxiety is the cause, but world-first research has found a genetic link to stuttering, allowing for life-changing early intervention.
Our host David Karsten is joined by Professor Janet Beilby, an internationally renowned stuttering expert and Director of the Curtin Stuttering Treatment Clinic (CSTC). They discuss how Beilby and her colleagues have pinpointed the genes associated with stuttering, meaning intervention can happen much sooner, which is crucial for managing the condition.
David and Janet also talk about the the impact stuttering can have on a person's life, and how the CSTC helps to manage stuttering and other fluency disorders in children, adults and the elderly.
Janet is a leading speech pathology clinician, researcher, educator and director of the Curtin Stuttering Treatment Clinic (CSTC). In July this year, Janet co-published world-first research in Nature Genetics that pinpointed the genetic markers for stuttering.
As director of CSTC, Janet has translated research into life-changing outcomes for over 10,000 clients, trained hundreds of students and been awarded over half a million dollars in research funds to investigate aspects of stuttering disorders, as well as dementia and virtual education.
This podcast is brought to you by Curtin University. Curtin is a global university known for its commitment to making positive change happen through high-impact research, strong industry partnerships and practical teaching.
Email thefutureof@curtin.edu.au
Read the transcript: https://thefutureof.simplecast.com/episodes/speech/transcript
Host: David Karsten
Producer: Emilia Jolakoska
Content writer: Zoe Taylor
Executive producer: Natasha Weeks
Curtin University acknowledges Aboriginal and Torres Strait Islander people, the First Peoples of this place we call Australia, and the First Nations peoples connected with our global campuses. We are committed to working in partnership with Custodians and Owners to strengthen and embed First Nations’ voices and perspectives in our decision-making, now and into the future.
Curtin University supports academic freedom of speech. The views expressed in The Future Of podcast may not reflect those of Curtin University.
00:00:00:03 - 00:00:09:12
David Karsten
This is The Future Of, where experts share their vision of the future, and how their work is helping shape it for the better.
00:00:09:14 - 00:00:33:01
David Karsten
I'm David Karsten. Stuttering is a condition that affects more than 400 million people worldwide, and most commonly occurs in early childhood, between the ages of two to five. Stuttering can have a huge impact on a person's mental health and wellbeing. Many children who stutter are bullied at school, and adults who stutter can face challenges in their relationships, workplace, and other areas of life.
00:00:33:02 - 00:01:05:17
David Karsten
Now, a world first global study has identified a genetic link to stuttering, meaning clinicians can predict which family members can have the trait and start crucial early intervention. The study was published in Nature Genetics in July and co-authored by Professor Janet Beilby. Janet is an internationally renowned stuttering expert and founder of the Curtin University Stuttering Treatment Clinic. Janet joins us today to talk about her research and how it's not only changing the lives of people who stutter, but also the future of speech science.
00:01:05:19 - 00:01:16:22
David Karsten
Now, if you'd like to find out more about this research, you can visit the links provided in the show notes. So. So, Professor Beilby, what is stuttering? Let's start with the absolute basics. What actually is stuttering?
00:01:16:24 - 00:01:49:07
Janet Beilby
Stuttering is a neurodevelopmental speech disorder that onsets in the very early preschool years. So it is essentially a vulnerability in the coordination of fluent speech. It starts between the ages of two and a half, and it's three and a half when children are really mastering interesting adult intonation patterns. So when their little muscles are working harder to get the contours of adult speech going, some children have a vulnerability to manage these demands well.
00:01:49:09 - 00:01:53:08
Janet Beilby
And some inherit a tendency not to do so.
00:01:53:10 - 00:02:05:13
David Karsten
You've been firmly ensconced in modern stuttering research for many decades now, but when you started out, what were some of the commonly held beliefs as to the causes of stuttering?
00:02:05:15 - 00:02:23:05
Janet Beilby
Look, that's a really good question, and it's something that I often reflect back on when I trained many moons ago. We...the belief was that stuttering was caused by an anxiety problem, and the children potentially had been traumatised in some way.
00:02:23:07 - 00:02:25:05
David Karsten
So it was purely neurological.
00:02:25:07 - 00:02:50:13
Janet Beilby
Purely and emotional and psychological in nature and onset. The early research was conducted in America, interestingly enough, by researchers who they themselves stuttered. So, you know, if you live with a problem that impacts on every aspect of your waking life, you are led to believe that it is psychological and emotional in nature.
00:02:50:13 - 00:02:51:09
David Karsten
Yeah.
00:02:51:11 - 00:03:03:18
Janet Beilby
But here in Australia, we have researchers who don't stutter. So we've looked at it, I guess, more objectively with a clean set of eyes, and we've been able to establish that it's physiological in nature.
00:03:03:24 - 00:03:10:14
David Karsten
Well, I was going to ask that there must be some objectivity issues. If you do stutter and you're trying to get to the root cause of the problem.
00:03:10:16 - 00:03:36:17
Janet Beilby
Totally. And then your PhD students perpetuate that particular ethos and ideology and so forth. Whereas we've really led the way in looking at these very objectively, very cleanly. And we have great PhD students who are now moving my research forward as we speak. And Australia really has become a jewel in the crown for stuttering research, so to speak.
00:03:36:19 - 00:03:46:00
David Karsten
I just said earlier in that question, the root cause of the problem. Now, is there a problem with my way of actually seeing it? Is it a problem or is it a condition or a disorder?
00:03:46:02 - 00:04:14:21
Janet Beilby
Look, these are really good questions. What we now understand is particularly with the neurological data that we've got. And now with the genetic data we know that individuals who stutter may be perceived more as being neurodiverse. This is just a different way of speaking, if you like. Before it has been pathologised and it's been stuck in a medical model.
00:04:14:23 - 00:04:44:18
Janet Beilby
Whereas now what we realize is that individuals who stutter, very bright, well-adjusted, normal individuals who happen to have a tendency to hesitate, repeat, stumble, get a bit stuck in their speech. So we have potentially no right to say it is problematic unless the person comes to us and says, I would like some assistance, I would like some help, I would like some strategies.
00:04:44:20 - 00:05:23:08
Janet Beilby
Now, of course, with little children, they can't have that degree of ownership. So we rely on the parents to put their hand up and say, I'm worried that my child is going to have this speech issue for the rest of their lives. Is there something you can do? And we are very good at early intervention. So I guess across the whole lifespan, we are now revisiting adolescents and adults who do not want to be blackened by a disorder label, who really are contributing very well and happy in society, but see themselves as speaking differently.
00:05:23:10 - 00:05:34:10
Janet Beilby
So there's been a shift in the nature of the clinical support, particularly in the last five years. And so it's fairly new information and perspective coming through.
00:05:34:11 - 00:05:52:02
David Karsten
It certainly does feel like a very recent development. A changing of tides, if you will. Can you maybe give us a little bit of an insight into the lived experience of, of, of a child that stutters and what they would have to deal with as I, as I move into adulthood.
00:05:52:04 - 00:06:23:21
Janet Beilby
Stuttering does potentially impact on every aspect of the person's life. So talking should be like breathing. Nothing should ever get in the way of that. And, little ones often feel frustrated because they start with repetitions. And if they're repeating, say for example, I, I, I, I want that one. It's used up 6 or 8 good words that they could have said.
00:06:23:23 - 00:06:55:09
Janet Beilby
So if it doesn't frustrate them, it may as the challenges of school and life and social repartee increase. And I have an excellent PhD student at the moment, Rachel Michael, who is conducting research into school aged children who stutter because 100% of those children get bullied. 100% all of the young school aged children we work with incurs some form of bullying.
00:06:55:11 - 00:07:18:13
Janet Beilby
So our responsibility is not only to help the clients see, but to help their psychosocial needs as well. Moving into adolescence, the research indicates that often young people who stutter are delayed educationally by up to 12 months because they're not the kids who put their hand up and say, excuse me, I didn't understand that. Can you go over it again?
00:07:18:15 - 00:07:46:14
Janet Beilby
They become covert. They don't want to put themselves on display. And then moving into adult. And this is not the case for every person. But it can be. And then adults often choose jobs that don't require a lot of vocal engagement and social discourse. They often choose partners who are very chatty and can compensate for these potentially. You know, there's a whole bunch of, impact of stuttering.
00:07:46:14 - 00:08:00:18
Janet Beilby
And I've researched that. Partners of people who started the siblings of people who started, the parents of people who stutter because it's a whole family and societal consideration, potentially. And impact.
00:08:00:21 - 00:08:24:14
David Karsten
I mean, even at the most basic level, thinking about how important confidence is as you move into your teenage years, particularly, it's I think it's unimaginable, having to, to, to, to navigate really quick social discourse. It can be it can bounce around so quickly as you as you move into, into teenage years and and adulthood must be devastating.
00:08:24:16 - 00:08:29:18
David Karsten
For, for for certain, members of society that are, that are going through this.
00:08:29:20 - 00:08:35:24
Janet Beilby
Absolutely. For adolescents and adults who stutter, they can anticipate the words coming up that they're going to get stuck on.
00:08:36:01 - 00:08:37:16
David Karsten
Oh, so there's the tension.
00:08:37:22 - 00:09:07:03
Janet Beilby
And they know the punchline of the joke. They know who was the best bowler in the cricket on the weekend. They know this. They have all the answers. But sometimes, particularly on those nouns and those key nouns, they're going to get blocked and stuck. And oftentimes society is unforgiving. If you can't talk quickly and get your ideas out with good panache, then you're going to be overridden or left behind.
00:09:07:05 - 00:09:36:16
Janet Beilby
So yeah, our ability to communicate is is our fundamental right. And look, nobody's perfectly fluent. You don't want to talk like a robot. There is disfluencies and umms and ahhs and that's very natural and very healthy. And it gives the speaker and the listener time and opportunity to process. But it's when it gets in the way. And that's the question that will often ask is, how does this interfere or compromise your ability to get through the day?
00:09:36:18 - 00:10:01:01
Janet Beilby
And a lot of our new work again, I feel like I'm at the crest of so much knowledge. I've been doing this for so long, and now the data are really catching up because we are working on programs that teach and help us make sure the person isn't defined by this data, that it's one facet of them, but we want them to lead a really values based life.
00:10:01:03 - 00:10:24:16
Janet Beilby
So yes, again, I've had another excellent PhD student who worked with me on fluency and acceptance and perspective on all of this. So it's not fixing someone, it's negotiating with them what they want and what they need in terms of individual strategies. But it's helping them to lead the best life that can be possibly engaged for them.
00:10:24:18 - 00:10:53:05
David Karsten
Tell us about the research that that is, has just been unveiled over the course of the last few months in Nature Genetics.
00:10:53:07 - 00:11:04:24
David Karsten
And look, that's a that's a real clue. I want you to start there, if you wouldn't mind. Professor Beilby, it's genetic. Now, that might be news to a few of our listeners.
00:11:05:01 - 00:11:07:14
Janet Beilby
Absolutely, absolutely.
00:11:07:14 - 00:11:12:10
David Karsten
Because when when did that become apparent to you and your team?
00:11:12:12 - 00:11:43:21
Janet Beilby
I think we've always known this. Because when you work clinically with a young child, you know, the father will often come in and say, oh, you know, I don't have great fluency. Oh, and my father was quite shy and never engaged around the dinner table and so forth. And there are little red flags in these stories that people will often open up and share with you and my colleagues here at the curtain stuttering, Curtin University Centre and Clinic.
00:11:43:21 - 00:12:07:10
Janet Beilby
And I did kind of a survey early in the piece, and we figured out that there are probably about 80% of the individuals coming through the clinic who had some who reported some sort of family history. But at the same time, I was very fortunate in starting to meet some interesting international colleagues who we would meet, for example.
00:12:07:11 - 00:12:16:15
Janet Beilby
I met Professor Kraft in Brazil at an international fluency disorders conference in Rio de Janeiro. Very exotic.
00:12:16:17 - 00:12:26:04
David Karsten
Although the best, best place for golf courses, isn't it? It's a it's it's not the first time I've heard that, in this studio as a, as a destination for an international conference.
00:12:26:04 - 00:12:35:05
Janet Beilby
Well, it must be something about like carnival. You know, everyone's a bit more open and maverick and sharing ideas. And she was a young postdoc student.
00:12:35:06 - 00:12:37:02
David Karsten
Where was where was Professor Kraft from?
00:12:37:06 - 00:13:05:20
Janet Beilby
From, Wayne State University in Michigan. Right. And she lives in Detroit. And, she and I started up conversations about this, and then I invited several other international visitors. Professor Bernstein Ratner from the University of Maryland, professor Scott Yarris, who was at the University of Pittsburgh then. And they came out here. And what they couldn't believe was the richness and the amount of data that we were sitting on here.
00:13:05:22 - 00:13:08:21
David Karsten
That you'd collected over what? By that point.
00:13:09:01 - 00:13:29:21
Janet Beilby
Well, the 45 years the clinic has been going. So we had records going back a long way. Not medical records, not electronic database, but we certainly had had hardcopy files and everything. And they came and watched us and they couldn't believe that the number of referrals we were receiving because we've always had a very non exclusionary approach.
00:13:29:22 - 00:13:58:09
Janet Beilby
Anybody who feels they want their fluency improved can walk in off the street. And the Curtin clinic opens its doors and we'll help them. So we had very interesting people from all different walks of society. We had juvenile offenders. The parole board had insisted that they improve their fluency so they could advocate themselves at their parole hearings. We had, children from Department of Communities whose parents had visitation access while they were here in the clinic with us as it was supervised.
00:13:58:11 - 00:14:24:03
Janet Beilby
So we had very complex in cases. We didn't have your stereotypical, client in a normal clinic. We had very diverse people. So we started collecting the data. These people visited and said, you've got to publish, you've got to do something with this and gave me a real kick to do that. And then I started publishing and then the ripple effect happened.
00:14:24:09 - 00:14:33:14
David Karsten
So at that point, professor, did you not really have an idea of where your research sort have sat in the pantheon of world right, world-wide research?
00:14:33:16 - 00:15:07:06
Janet Beilby
Look, I, I knew that we could challenge a lot of the archaic thinking that ivory tower research centres kept perpetuating that it was emotionally based, that the parents had done something wrong, that the people were psychologically damaged. And we work with so many diverse clients here, I knew that was wrong. Wrong, wrong. So I guess I reached out and started attracting people with like-minded philosophies who were more broad thinkers.
00:15:07:08 - 00:15:19:16
Janet Beilby
And along the way, we revisited our connection with Professor Kraft and became part of the International Stuttering Project. Now this is a project that has members from all over the world.
00:15:19:18 - 00:15:22:12
David Karsten
And how long is that project been in place?
00:15:22:14 - 00:15:45:02
Janet Beilby
Was officially had the project established? Probably only for the last seven years. Right. And we decided to formalise the relationships. So all of those people I now meet, and we have network meetings, we do a lot of work online, of course, and so forth. And we're now part of a multi-site consortium.
00:15:45:04 - 00:15:53:15
David Karsten
When do you start to to go down the DNA marker route and taking samples and putting that through a testing phase?
00:15:53:17 - 00:16:26:15
Janet Beilby
It started in 2013 officially. So we've been doing it for nearly 13 years now. We started the collection. We got a small amount of money, but Curtin have supported this enterprise very generously. And successfully. So we started gathering data back in 2013 and fairly early in the piece. We met, a family called the Hunt family, and James Hunt was in his 90s.
00:16:26:17 - 00:16:56:02
Janet Beilby
And he volunteered his DNA. He lived with this stutter all his life, and he was determined that his family would help us. Quite a remarkable patriarch. So we got his saliva samples. We got his very rich DNA. He had four children. We managed to get DNA from three of his children. Then they, of course, had children who were the parents of the children we were seeing in clinic.
00:16:56:04 - 00:17:07:14
Janet Beilby
And large numbers of those started lot didn't, but some did. Then we sample what we call the terminal generation, and it's it sounds worse than it is.
00:17:07:16 - 00:17:09:24
David Karsten
The terminal a fine place looks like.
00:17:10:01 - 00:17:12:16
Janet Beilby
It's where the study currently stops. Right.
00:17:12:17 - 00:17:13:00
David Karsten
Okay.
00:17:13:03 - 00:17:28:22
Janet Beilby
So these are the children. The great, great grandchildren of James Hunt. Now, of this terminal generation, of the 27 offspring so far, I've treated 24 of them.
00:17:28:24 - 00:17:32:22
David Karsten
Wow. Well, that that is that is a research opportunity like no other.
00:17:32:22 - 00:17:56:13
Janet Beilby
And we are now drilling down and investigating this family in and of itself, because what we're finding is there's something going on with this family that is perhaps different to the general public. When you've got such a high density and such a high penetrance, there's got to be stories within their DNA. So that's at the cusp of our research at the moment.
00:17:56:15 - 00:18:06:13
Janet Beilby
And we're hoping that the Americans can continue the level of analysis that we've had thus far in the current climate.
00:18:06:15 - 00:18:14:14
David Karsten
So immediately, the question I want to ask is, is there a is there a clear path or is it an overall density?
00:18:14:16 - 00:18:45:15
Janet Beilby
It's an overall penetrance. The probe ends don't follow any particular path. They're not coming from the mother or the father. It's it's an interesting mix. And so it crosses a whole set of boundaries and information rich information. And these are lovely, healthy, cooperative people who've, kindly put their hand up and said, yes, we will help carry on his legacy from this amazing chap who, as I said, he he made it to his 99th birthday.
00:18:45:15 - 00:18:48:06
Janet Beilby
Oh, wow. And, we're indebted to him. Yeah.
00:18:48:11 - 00:19:00:14
David Karsten
Good on him. Good on Mr Hunt. There's a clear DNA path as the contributing factor. The commonality is that. Is that correct? And you. And you're still trying to identify the marker or.
00:19:00:16 - 00:19:27:10
Janet Beilby
Well, that, as I say, that family stands alone because it is quite extraordinary. We do have other high-density families. But genes aren't destiny. Just because you have it in the family, it doesn't mean that it's going to manifest itself. Genes aren't necessarily the answer. We now looking at the phenotyping what might be pulling this protein mutation to the surface.
00:19:27:12 - 00:19:42:09
Janet Beilby
You know genetics is a fascinating area of investigation. But you need large numbers and you need a lot of patience and you need longevity of data. So it's ongoing.
00:19:42:12 - 00:19:57:13
David Karsten
So for Professor Beilby, the, the, I guess the publishing in July, was that an announcement of a confirmation of hereditary markers, or was it was it the identification of those hereditary markers?
00:19:57:15 - 00:20:38:19
Janet Beilby
Well, both, I guess, this was the largest genetic study into stuttering that had ever been undertaken. And to have it recognised and published in nature is quite extraordinary, because nature often doesn't investigate the human stories. It often investigates hard science. So we had to work very hard and very cleverly to have these data acknowledged. And we were fortunate enough, the American team tapped into a huge database called 23 or Me.
00:20:38:21 - 00:21:13:24
Janet Beilby
So 23 or Me is the American equivalent of our Ancestry.com. 23 or Me is an extraordinary, database across America. And I think all up there are 40 million samples in this particular database. And what one of the scientists, Piper Below, was clever enough to do was to look at the case history information that the people donating their saliva filled in and on it, believe it or not, was a question.
00:21:14:01 - 00:21:17:09
Janet Beilby
Do you or does anyone in your family stutter?
00:21:17:13 - 00:21:18:04
David Karsten
Wow.
00:21:18:06 - 00:21:18:18
Janet Beilby
I know.
00:21:18:18 - 00:21:21:10
David Karsten
What are the chances?
00:21:21:12 - 00:21:56:24
Janet Beilby
But 23 or Me is not a research centre. It's a commercial enterprise. So then she had to work really hard with all the legal advisors to access this database. And we had to really satisfy so many criteria to access these particular samples. And also we had to then do some complex computer modelling to make sure that we weren't just getting people who tick the box that we actually were drilling down to those who had genuine stuttering in their, in their particular family pedigrees.
00:21:57:00 - 00:21:58:08
David Karsten
That sounds like a massive task.
00:21:58:09 - 00:21:59:03
Janet Beilby
It was huge.
00:21:59:07 - 00:22:00:10
David Karsten
Yeah.
00:22:00:12 - 00:22:28:15
Janet Beilby
And it was supported well by the US government through grants from the National Institute of Health. And one and our three grants was successfully obtained to help this level of analysis. So we had access to large numbers of people, but we also had access to controls within that. And we added the samples that we had obtained from various stuttering clinics around the world.
00:22:28:17 - 00:23:01:19
Janet Beilby
And the largest donation came here from Curtin University. Wow. Yep. It was still been gathering since the data was published, and I think now we're up to 1500 samples. And these people were elegant in that they were clearly diagnosed. They were healthy. We had good diagnostic criteria. These were the gold standards. And we affected them into the data, analyaed it with more complex modelling than I really understand myself.
00:23:01:24 - 00:23:04:09
Janet Beilby
And we ended up with a million samples.
00:23:04:11 - 00:23:07:10
David Karsten
Gracias. That's a decent sample size.
00:23:07:12 - 00:23:25:07
Janet Beilby
Including controls and including people who were affected by stuttering. So it was huge. And fortunately the Nature editors is felt the same. And it was done very well. Now through this we 47 new DNA markers for stuttering emerged.
00:23:25:08 - 00:23:26:07
David Karsten
47.
00:23:26:08 - 00:23:27:01
Janet Beilby
Yes.
00:23:27:03 - 00:23:28:14
David Karsten
That's a phenomenal outcome.
00:23:28:14 - 00:23:44:16
Janet Beilby
Yes. From all of the hundreds of thousands of DNA markers that you have in your body. We identified, well, statistically significant 47 samples. We were very confident. These are the ones.
00:23:44:16 - 00:23:45:23
David Karsten
With a million samples. We should be.
00:23:45:24 - 00:24:16:22
Janet Beilby
Yep. But within those samples, what we also saw. And we're now again analysing this, some very interesting other findings. So for example, we have a high proportion of people who also had the DNA markers for autism spectrum disorder. Not all of them, but a percentage. We also found individuals who had a high percentage of twitching muscle syndrome.
00:24:16:24 - 00:24:24:21
Janet Beilby
We also found individuals who had emotional regulation difficulties. We also fascinating.
00:24:24:21 - 00:24:25:12
David Karsten
Sorry. Keep going.
00:24:25:13 - 00:24:57:19
Janet Beilby
Individuals who, for example, had eczema asthma. So there are some stories within this. Yeah. Which is what genetics should do. Yes. It should open up avenues of exploration. And I'm not in any story implying that everybody who stutters has these concomitant problems. But they may also have these problems. So what it's done is it's revolutionised the new model of stuttering.
00:24:57:21 - 00:25:19:22
Janet Beilby
Yeah. We now look at stuttering, for example, the same way that you might look at asthma. If a child has asthma, you give them a puffer. You address the disorder. Of course you do. But you also look at the concomitant. You look at dust mites. You look at allergens. You look at pollens. Yeah. So now what we doing with stuttering is when a child comes to the clinic of.
00:25:19:23 - 00:25:41:24
Janet Beilby
Of course we will work with the parent on helping them treat the stutter, but we will ask them about their sleep patterns. We might ask them about their self-regulation and emotional regulation strengths and so forth. Because their parents need help with these can competence. Yes. As much as they need help with this data. You can't treated in isolation.
00:25:41:24 - 00:25:46:20
Janet Beilby
You've got to look at the whole child holistically within the family structure.
00:25:46:23 - 00:25:49:05
David Karsten
You're trying to get a fuller picture with this information, aren't you?
00:25:49:06 - 00:25:50:00
Janet Beilby
Absolutely.
00:25:50:02 - 00:26:10:15
David Karsten
You’ve you've partly answered, what I'm about to ask. And in that this, this revolutionary research and findings must be changing the way that treatment is approached. Is this now going to be adopted? Across speech pathology?
00:26:10:17 - 00:26:53:02
Janet Beilby
I really hope so. Unfortunately, there is still some research centres who perpetuate their own particular treatments. And because they you get funded when you publish. So unfortunately some of the research centres are still holding on to outdated philosophies. I believe it's changing. But we need people like Speech Pathology Australia the professional body, to come on board and support and applaud these new models of clinical support, which are the same for every other aspect of speech, not just stuttering.
00:26:53:04 - 00:27:16:21
Janet Beilby
But we are up against people who hold fast to these outdated, in my opinion, outdated philosophies. But that's never stopped me before and it's not going to stop me now. So we keep spreading the word. And then, as I said, the Nature publication has given us such validity that people are sitting up and taking notice in ways that they wouldn't have before.
00:27:16:23 - 00:27:36:10
David Karsten
Well, 40 to 45 years, in the biz would suggest you have some persistence. Professor, we, when we talk about, treatment and possibly a new sort of holistic regime, that would mean that that treatment is no longer, a one size fit. And I'm not saying it has been, but it is not a one size fits all.
00:27:36:15 - 00:27:42:20
David Karsten
Fits all. It becomes very much tailored to each individual's situation and circumstance.
00:27:43:01 - 00:27:51:21
Janet Beilby
I couldn't agree more. And traditionally it has been a one size fits all. Oh, believe it or not, they have published manuals on how to work with the child who studies.
00:27:51:22 - 00:27:52:12
David Karsten
Right.
00:27:52:14 - 00:28:14:06
Janet Beilby
Tell me, a child who comes to life with a manual and I'll believe them. People and adults do not come with manuals. You don't have to stigmatise them. You don't have to chase a holy grail of perfect fluency. You educate someone. You tell them what their treatment options will be. What you can do, and then you negotiate it and make it client centred.
00:28:14:06 - 00:28:27:10
Janet Beilby
Goals. And this is how health should proceed. It should. You shouldn't make decisions without the person really being truly informed and offering them a broad range of possibilities and help.
00:28:27:12 - 00:28:38:04
David Karsten
So Professor Beilby, another arm of of the work that you and your team are doing involves, something called resilience, acceptance and commitment therapy. Can you just expand on that for us?
00:28:38:06 - 00:29:07:09
Janet Beilby
Yes. We conducted research with preschoolers between the ages of three and six who attended the clinic. And what we found was that 48% of these little ones had sub-profile or diagnosed ADHD. And, you know, they would come in. And these were the really busy little bees, the ones who would be buzzing all over the place with toys or, you know, meltdowns with you could see jigsaws didn't work.
00:29:07:09 - 00:29:44:03
Janet Beilby
They'd get so frustrated. And so this PhD student and I devised a resilience program working with parents of children who stutter. And we used, excellent researchers from the Triple P Parenting course, which came out of the University of Queensland. And we modified it for parents of children who stutter. And it incorporated parenting practices that are things like instilling autonomy in your children by giving them chores and giving them responsibilities.
00:29:44:05 - 00:30:08:07
Janet Beilby
Pulling back on praise. You know, praise makes behaviours extraordinary instead of ordinary. They it's based on some very interesting work, from Russ Harris acceptance and commitment therapy, whereby he says you don't want a happiness trap. You don't want to keep your kids happy all the time. What you want is for them to be well-adjusted adults.
00:30:08:09 - 00:30:35:10
Janet Beilby
And that means having resilience to deal with life in all its adversities as well. So it's a different set of practices from the positive parenting, which is all about five prizes. When you you know, and these are some of the treatment programs, the old treatment programs for stuttering offered five prizes every time the child was fluent. Well, this is so contrived and so artificial.
00:30:35:10 - 00:30:36:15
Janet Beilby
It sounds so unnatural.
00:30:36:15 - 00:30:37:10
David Karsten
Sounds exhausting.
00:30:37:11 - 00:30:56:05
Janet Beilby
It was exhausting for parents. And we come along and go offer them guidance such as careful, darling. Yep. I knew you could. Off you go. And it's quicker. It's more. The child's more robust. And they move through life in it with a different set of strengths.
00:30:56:07 - 00:31:00:00
David Karsten
Well it's a, it's a, it's a more accurate reflection of, reality of life, right?
00:31:00:00 - 00:31:21:08
Janet Beilby
That's exactly right. And then, my PhD student, Alice Carter, and I worked on it, what we call a FACTS program, which is fluency and acceptance and commitment therapy for adolescents and adults who studied the Act component. And this is the opposite to CBT. I feel like everything I'm saying is the opposite to traditional perspectives.
00:31:21:10 - 00:31:25:03
David Karsten
Well there's a theme. You're a rebel.
00:31:25:05 - 00:31:46:05
Janet Beilby
Well, CBT is based on thought replacements. You have a negative thought. You replace it with something positive. Now, bearing in mind we're dealing with adolescents and adults now and actually some school age kids. And then you do positive affirmations. Well, for adults who started, they could tell themselves 30 times over that they're going to make a successful phone call.
00:31:46:07 - 00:32:07:22
Janet Beilby
Do they know. Not necessarily. So again what we did was we looked at more the psychosocial support. We looked at. These people were really hurting. There's no point making the flight if they're going to walk out the door and drive to the doctor because they can't pick up a sign and make an appointment. Because the stutter was really blocking and getting in the way.
00:32:07:24 - 00:32:36:16
Janet Beilby
Acceptance and commitment therapy was on two grants with people who had spinal cord injury. And severe pain. Now they worked with different researchers for those particular individuals. But those disorders were really catastrophic. And what we found was when you do acceptance and commitment therapy, and very briefly, it's just about you don't let the problem define you. You accept it.
00:32:36:18 - 00:33:01:23
Janet Beilby
You stay in the moment. Little bit of grounding and you move on and you let the thoughts come and you let them go, but you don't struggle. Acceptance and commitment therapy takes away the struggle and the effort. And now, behold, when you eliminate the struggle in the effort and it is what it is, and you move on, the symptoms improve.
00:33:02:00 - 00:33:02:15
David Karsten
Really?
00:33:02:20 - 00:33:32:16
Janet Beilby
Without you targeting the symptoms directly. And back in 2012, I published the first Act treatment for adults who stuttered, yes, I worked with ten women and ten men who stuttered. And we found that when you build in the act component, along with the fluency strategies, these people had better mental health outcomes, that had better quality of life, and they kept themselves relatively fluent, even with the follow up data that we gathered.
00:33:32:18 - 00:33:56:07
Janet Beilby
And since then, yes, I've gone on written book chapters, and my PhD student has done a an international study whereby she worked with individuals from all over the world who stuttered incorporating Act. And the data are very powerful. So this again is a new wave of of treatment. But it maps back to our DNA findings. It maps back to that beautifully.
00:33:56:09 - 00:34:05:03
Janet Beilby
So I feel like the pieces of the jigsaw are coming together after all of this time. It's all culminating in a good picture with perspective.
00:34:05:05 - 00:34:31:23
David Karsten
Well it really does seem like you have the, the, the what covered with with the identification of DNA markers and, and and prior to that being confirmed, you had already had in place this, this process for, for living with, with stuttering. You mentioned earlier that, that the the doors at the Curtin University Stuttering Treatment Clinic are open.
00:34:32:00 - 00:34:41:10
David Karsten
So what words of advice do you have for parents who are identifying a possible stutter in their child? What steps do they take?
00:34:41:12 - 00:35:08:15
Janet Beilby
My first words of advice would be trust your instincts. Don't listen to others. Don't do Doctor Google. You feel your child is doing something that is getting in the way of their ability to speak quickly and easily. Put up your hand and come give us a call. Send us an email and then we will do a full assessment.
00:35:08:19 - 00:35:33:17
Janet Beilby
It's a student training clinic so the students under supervision conduct all of this. And then we will share the results with the parents and then determine whether or not they'd like to proceed with some help with some therapy. And 99% of the time yes they want to proceed. Because we will educate them about what it is. We'll share the latest research.
00:35:33:19 - 00:36:04:06
Janet Beilby
And then you see little light bulbs going off in their minds in their stories. And that it resonates with them on so many levels. And then the parent is committed because it's all parent administered. The children come along and just have fun. I play with slime and you know, I have great toys and but we train the parents and how to gently interject when the child is stuttering in a very neutral way, the same way as they would if the child was going to knock something over or back into something.
00:36:04:08 - 00:36:29:03
Janet Beilby
They might use very low key, but clear parenting guidelines like careful, darling, oops. And that nips stuttering in the bud, stops the synaptic pathways from getting practiced and strengthened, brings them over where they should be in the temporal lobe. We all have fluency, sit singing in our rhythm, and off they go. And then fluency becomes more robust and secure so that they're.
00:36:29:03 - 00:36:38:20
Janet Beilby
I'm making it sound very simple and easy, but it often times it really is, as long as it's close to onset. The longer the child's been left to stutter, the more hardwired they become.
00:36:38:20 - 00:36:41:00
David Karsten
The like anything, the earlier the better, right?
00:36:41:01 - 00:36:42:00
Janet Beilby
Exactly. Thank you.
00:36:42:04 - 00:36:53:10
David Karsten
So, is everybody that walks through those doors. Do they become part of your ongoing research? Is that data collected? And and and furthers your work?
00:36:53:15 - 00:37:17:14
Janet Beilby
Well, we have to follow very strict ethics, of course, with DNA. We will invite them. They the information sheets. Nothing to do with the clinic. They are held at the front desk, so there's no element of coercion. We make it very clear that they're. If they want to participate, they're welcome to do so. But it doesn't in any way influence their ongoing relationship with the clinic.
00:37:17:16 - 00:37:46:03
Janet Beilby
And, you know, we run some very interesting groups over at the clinic. We have a down syndrome group of people who stutter, a downs group. And we'll have a school age group. We had a group of children who had autism and stuttering. We'll have an adult group, and people come not to necessarily have the stutter cured, but to feel more in control.
00:37:46:05 - 00:38:10:05
Janet Beilby
And the groups are a very powerful way of them identifying with others. They're not alone. They’ve often gone through life fearing that they're the only person on an island, and someone said like, I'm in a foreign land. But when they come along, there's acceptance. There's the kids go up to Common Ground and get hot chips and, you know, chocolate and and they, they get so excited.
00:38:10:05 - 00:38:16:20
Janet Beilby
The night before the, the clinic group that they can hardly sleep. It's very supportive, very positive, very bonding.
00:38:16:22 - 00:38:18:04
David Karsten
It's affirming in its own way.
00:38:18:05 - 00:38:42:02
Janet Beilby
Yeah. So there's a range of treatment options that they would then be offered. And essentially it's up to them. But we do ask that they commit to come along, that they uphold their end of the bargain because it's a student student training facility. Yes. So we need the continuity, for the students learning as well. But every student who's gone through the speech pathology courses, the undergraduate and master's courses, attends the clinic and goes through the clinic.
00:38:42:04 - 00:38:52:15
David Karsten
I imagine that, you have some really, I guess, well-defined subsets of data. Now, now that you have those, those individual groups and that again, must, expand.
00:38:52:21 - 00:38:53:07
Janet Beilby
Yes.
00:38:53:09 - 00:38:56:08
David Karsten
Your research frontiers immensely.
00:38:56:10 - 00:39:22:15
Janet Beilby
Definitely. And as I said, when I attended the the World Congress of Stuttering and Cluttering Conference, and it was in Oxford just a few weeks ago and reconnected with all my international mates and friends and shared they heard some very interesting research that's saying, now we've got to look at parenting practices, because if we don't analyse the sort of parenting practices that somebody uses, you're not going to get compliance.
00:39:22:17 - 00:39:41:05
Janet Beilby
So it's really respecting so many other factors. Whereas we thought we were the experts traditionally when I graduated, now we realised no no no. We're there to facilitate. But respecting and understanding the family, the parents the child factors within them is crucial.
00:39:41:06 - 00:40:03:06
David Karsten
It's a combined effort really isn't it. Yeah. This this this uncovering, of the discovery or this this confirmation of what you've always suspected. Does this does this mean that, I guess genetic screening will be part of speech assessments in future? Is that going to be a thing?
00:40:03:08 - 00:40:38:10
Janet Beilby
Look, basically, quite honestly, it gets down to funding and genetics is expensive. But it's very powerful and it can crack the codes so quickly and so easily. I would love for that to be the case. We writing grants at the moment we're submitting grants and the big funding bases come out of America. So we're just continuing to keep on keeping on and wait to see what happens with the funding bases there.
00:40:38:12 - 00:40:53:00
David Karsten
What is next for you? I mean this is such a, I guess, a milestone moment for you this year to, to have unveiled, your research, on such a global platform. What do you do from here?
00:40:53:02 - 00:41:09:23
Janet Beilby
You write. It's a hard act to follow. I think we had reached something like 17 different countries. We were featured in the London Independent Pakistan Times. I was interviewed by New Zealand Radio. It really has gone viral.
00:41:10:02 - 00:41:15:03
David Karsten
We had to get in line. We had to. We had to take a number. Professor Beilby wait. Yeah.
00:41:15:05 - 00:41:58:09
Janet Beilby
No, you're part of the family. So there was no way it was going to be easier for you guys. Look, publications looking at particular high-density families, looking at concomitant behavioural considerations. Continuing the DNA database, continuing to build, it's ongoing, but I do have some wonderful PhD students who eventually I will hand the reins over to and be very confident that the profession and looking at stuttering is in very good hands.
00:41:58:11 - 00:42:22:18
Janet Beilby
So, I will continue to work with them and do good clinical research. I my philosophy has always been, you don't do research unless it has a good clinical message. I have no right to to do anything that doesn't have benefit. And they will continue that ethos and it'll be in good hands.
00:42:22:20 - 00:42:31:12
David Karsten
The work you've been doing has been so admirable and impactful. And, and it's been such a pleasure to to have you on the podcast today to talk to us about it. Thank you.
00:42:31:14 - 00:42:35:10
Janet Beilby
Thank you for the opportunity. I really appreciate it. Thank you.
00:42:35:12 - 00:42:48:21
David Karsten
You've been listening to The Future Of, a podcast recorded on Whadjuk Boodja and powered by Curtin University. If you enjoyed this episode, please share it and if you want to hear from more experts, stay up to date by following us on your favourite podcast app. Bye for now.