In this episode, Professor Hugill and Julia delve into how invisible disabilities impact hearing experiences, discussing terms like neurodivergence and aural divergence. The conversation explores tinnitus, its effects on musicians, auditory processing disorder (APD), misophonia, diplacusis, and palinacousis.
They emphasize the importance of patient-centered care and raising awareness about aural diversity.
Check out the Aural Diversity webpage for more information: https://auraldiversity.org/
EPISODE SUMMARY
the second and final episode of 'Sounding It Out’, Series 4, Julia Van Huyssteen, Head of Audiology at Signia UK and Ireland, hosts Professor Andrew Hugill from the University of Leicester to explore beyond the audiogram into various individual experiences of hearing. They delve into conditions like neurodivergence and aural divergence, explaining terms such as tinnitus, auditory processing disorder (APD), misophonia, diplacusis, and palinacousis. Professor Hugill shares personal insights and discusses the complexity each condition brings, especially in musicians.
He likens neurodivergence to the difference between operating systems like Windows and Mac. They talk about how often individuals with normal audiograms still struggle to process sound and the potential overlap with other conditions, emphasizing the need for personalized patient care. The importance of raising awareness about these conditions, making reasonable adjustments, and providing appropriate support is underscored.
The episode stresses the importance of patient-centered care, acknowledging the unique needs and circumstances of each individual. Listeners are encouraged to visit the Aural Diversity Network website for further information and to revisit previous episodes of the podcast to expand their understanding of hearing health.
Finally, the show calls for more dialogue on less-known conditions and invites listeners to suggest future topics to continue raising awareness about aural diversity.
See omnystudio.com/listener for privacy information.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Julia van Huyssteen (00:09):
Hello and welcome back to Sounding It Out. As we
always say, a podcast dedicated to audiology and hearing health,
brought to you by Signia UK and Ireland. I'm Julia
van Huyssteen, your host, and I'm so happy to be
back with a second of two new episodes in series
four. I'm the head of audiology at Signia UK and
(00:30):
Ireland and hearing health is really a very great passion
of mine. I'm really happy to say that these podcasts
are Signia- neutral, so that everybody with an interest in
hearing health or audiology can benefit and enjoy them. For
this series, we are going beyond the audiogram and we
are exploring individual experiences of hearing. My guest speaker is
(00:52):
Professor Andrew Hugill, who is the deputy director at the
Institute for Digital Culture at the University of Leicester, where
he has also founded the Creative Computing program. His background
is in music, in which he is a professor and
he's an active composer and musicologist. Throughout his career, he
worked across artistic and scientific disciplines. As I said on
(01:14):
our previous episode, Professor Hugill has three invisible disabilities and
he uses these as a platform to work actively in
these three areas to improve lives for others with the
same or similar conditions. He's autistic, which includes social and
sensory issues, but absolutely no learning difficulties. He has severe
(01:34):
hearing loss, including tinnitus and diplacusis and he also has Ménière's
disease, a balance disorder, which caused the hearing loss in
the first instance. And these all contribute to his passion
for aural diversity and hearing differences that we introduced in
our first episode. So to summarize, in our first episode,
we introduced things like the auditory system, animal hearing and
(01:57):
also technology. Today, we will explore how invisible hearing disabilities
or difficulties may affect people's hearing experiences and how we
can influence the perception and appreciation of these difficulties and
therefore, ultimately, providing appropriate support. Professor Hugill, welcome back and
(02:19):
thank you once again for joining me for this podcast.
Professor Andrew Hugill (02:21):
Thank you. It's a pleasure.
Julia van Huyssteen (02:23):
Professor Hugill, here is my first question to you. Let's
start by asking you to once again explain the terms
neurodivergent, which you've already done during the first episode, but also aural
divergent, because I think this will tee us up quite
nicely for the rest of the episode. We introduced aural
diversity in our previous episode, but I feel we are
(02:45):
ready to do a bit more of a deep dive
into those terms.
Professor Andrew Hugill (02:49):
So aural divergence and neurodivergence both refer to deviations from
a predominant type. So in the case of neurodivergence, it would be
a deviation from the predominant neurotype. So the majority of
people are neurotypical. That's to say their brains are different,
(03:11):
but they follow a broadly similar pattern. And then you
have groups who have a marked difference, a neurodivergence, which
is basically something you're born with. It's something that characterizes
you and makes you who you are. In my case,
you've mentioned autism. Autism is a difference in brain type.
(03:35):
It's a different way of wiring the brain, if I can
put it like that. The analogy I often use, it's
like the difference between a Windows operating system and a
Mac operating system. They both do the job of computing,
but they do it in very different ways and things
that work on a Windows computer will not necessarily work
(03:56):
on a Mac computer and vice versa. So it's a
bit like that. You see the world, you experience the
world differently. And the same goes for are aural divergence.
You hear the world differently. And this underpins a lot
of the terms that you've used. The differences that are
the result of some kind of brain or neurological processing.
Julia van Huyssteen (04:21):
I love that analogy and that's definitely something that I
will use moving forward when I'm talking to colleagues and
patients. That's brilliant. It's fantastic, because it just makes sense.
It really does make sense if you put it that
way. We're probably ready at this point to delve a
little bit more into this neurodivergent and aural divergent factors
or conditions or hearing differences and I think it's probably
(04:44):
best for us to start with something that most people
will have heard about before and that is, of course,
tinnitus, which of course, you've shared you also have. We
briefly touched on it and obviously, that coexists with your Ménière's
disease as well. And I think for our listeners, for
those that are not in the hearing industry and that
are just enjoying hearing about hearing and aural diversity, the
(05:07):
shortest possible definition I have really is that tinnitus is
a sound or a perception of sound internally that isn't
delivered externally. So the sound that you hear isn't present
from the outside or externally. And it often involves sounds
(05:27):
like clicking or buzzing, roaring, whooshing, or whistling. Of course,
we have to acknowledge people's frustration with tinnitus. We've got
to acknowledge how hopeless people can feel, the anxiety that
goes with it, sleeping problems and we've got to support
(05:47):
people through those two in terms of their experience with
tinnitus. In addition to that, we can also have a
bit of a different perspective when we talk about tinnitus
in terms of where hearing and sound is important to
the career and the hobbies and things like music. So
I think from both yourself and the people that you
(06:08):
talk to through Aural Diversity and through your music experiences,
I'm wondering how tinnitus impacts musicians where pitch and tone
and timbre and volume, all of that is so important.
And then yet, you've also got this sound inside your
head that is going on at the same time while
(06:28):
you're trying to deal with the external sounds so specifically.
What's your thoughts on that?
Professor Andrew Hugill (06:34):
Well, I think for musicians, it can be extremely debilitating
and there are quite a lot of prominent examples in
all fields of music actually, of musicians who've had to
basically give up their careers because of tinnitus. And those
who've managed to find ways of carrying on often do
(06:55):
so in ways that make adjustments for the tinnitus that
themselves affect the musical production. I think it's incredibly common
in the music industry. Interestingly, as much in the classical
music industry as in the rock and pop, people tend
to assume that if you're exposed to loud noises for
long periods, that will give you tinnitus, which it certainly
(07:17):
will, but they tend to think that, "Oh, the rockers are going
to have the worst tinnitus, because they make the loudest
music." But actually, if you think about an instrument like
a violin or a piccolo, where the sound is being
produced very close to your ear and is often connected to
your body with a physical connection, so you have the
(07:37):
vibration, the bone conduction, as well as the sound. And
the sounds are intense, so it's not just the volume
of the sound. It's the intensity of the sound. These people
often experience great problems with tinnitus. This is my crude
understanding of tinnitus. I'm very aware that there's a lot
(07:57):
of research and it's still very active. This is, I
think, what's happening and this is why it's triggered not
just by physical input. Loud noises and so on will
trigger tinnitus, but it's also very much affected by your
psychological condition at the time. So if you are tired,
(08:20):
if you've consumed a lot of alcohol, if it's the
middle of the night and you've woken up, these are
the times when tinnitus really intrudes in a major way.
So perceptually, it seems louder, it seems more insistent, more
prominent. One other interesting thing about tinnitus that many people
(08:40):
in the network have talked about is that if you
use the word tinnitus, it makes your tinnitus worse. In
fact, we published a book called Aural Diversity a few
years ago, which contained essays by people from the network.
And Patrick Farmer wrote an essay about tinnitus, which he
experiences, but rather than use the word tinnitus, he used
(09:02):
a wavy line. So it's like a symbol, like a
tilde. I thought that was a really clever idea, to avoid
the actual word.
Julia van Huyssteen (09:14):
So that's really interesting. I think from my point of
view, I'm probably going to say something that isn't achievable,
but we want to promote healthy hearing behaviors as much
as possible within our industry for musicians, for everybody. Musicians
in particular. And I don't know how realistic it is
to talk about ear protection, but I do know that
(09:34):
nowadays, we've got some really advanced, different types of protection
that will attenuate sounds very specifically in terms of both
the frequency response that it attenuates and also the amount
of gain that is reduced by.
Professor Andrew Hugill (09:50):
Yes. Well, it's very important for musicians to use hearing
protection. In rehearsals, in concerts, every musician should have flat
frequency response earplugs that they use as a standard. And
not just with amplified music. With acoustic music too. I've
written about this. I wrote a book called The Digital
(10:11):
Musician, which was first published in 2008. It's now in
its third edition and it's a standard textbook in most music
courses. In that book, I have a whole section on
hearing protection. I think it's that important. And particularly in
an era of in- ear buds, where people are listening
to music with these inserts into the ear, I think
(10:35):
it's generally accepted that it's roughly 40 minutes before the
acoustic reflex gives up basically and you start to actually
damage your hearing. So if you're playing for two hours,
you are actually damaging your hearing at that point, or
(10:57):
if you are listening to music for two hours, you
are damaging your hearing. And initially, you won't notice that
when you're young, but gradually, it will become more and
more evident and it's cumulative and there's no going back.
Once it's damaged, it's damaged. So that hearing protection is
tremendously important for musicians. As for audiology and improving hearing
(11:20):
health, I am aware that for audiologists, their worst patients
are musicians, because musicians come in with a whole lot
of assumptions and things, which the audiologist basically doesn't deal
with or cannot deal with. It's not part of what
they're there to do. But if I can just politely
(11:44):
to my audiology colleagues say that from a musician's point
of view, the experience of dealing with an audiologist is
quite frustrating, because we know, for example, that the audiometric
tests that you do do not cover even anything below
middle C on the piano. Basically, you're already focusing on
(12:07):
an area of hearing that doesn't include most of what
I deal with as a musician. I know why you're
doing that. It's because your focus is speech. The whole
audiology and hearing aid industry is focused on speech, but actually,
if you're a musician, that's not your primary focus. And
we would probably argue that there are more richness in
(12:31):
things that are not speech in life than in things
that are just speech. Musical sounds are quite rich. I
have actually suggested at an audiology conference once before that
all audiology degrees should include a module on music and
this was greeted with a fair degree of hostility. Someone said, "
(12:51):
Does that mean opticians should all look at paintings?" And
I said, " Well, yeah. I think it does." Just because
I think people need to be aware of the full
spectrum of hearing and music is one of those things
that really, particularly classical music, deals with the complete range
of audible frequencies, amplitudes and so on. It's not that you're
(13:14):
necessarily going to change your audiometry radically for this, but
in terms of supporting the patient and enhancing quality of
life, having that awareness would be a great advantage, I think.
Julia van Huyssteen (13:28):
Mm- hmm. Fully, fully, fully agree with you. I acknowledge
these frustrations and I also understand that as an industry,
we need to address those two.
Professor Andrew Hugill (13:40):
There is a technical problem, of course, with lower frequencies,
which is that hearing aids can't actually reproduce them, because apart
from the fact there's a vent in a hearing aid,
which means that no base frequencies are going to be
contained, the wavelengths are just too long. So there's a
technical reason why you wouldn't consider that, but my argument
(14:00):
is not just about fitting hearing aids. My argument is
about the whole patient and this is aural diversity in
action. Yeah, hearing aids are hearing aids, but there are
other forms of hearing, other forms of hearing device, other
forms of hearing the world and I think an audiologist
needs to take an interest in those as well as
(14:21):
in the more traditional, " Let's fit a hearing aid, so that
this person can hear speech better."
Julia van Huyssteen (14:27):
No. Agreed. Agreed 100%. We're definitely aligned on that. So
my next question is on a topic that I'm also
extremely passionate about and that is auditory processing disorder, or
short, APD, which is where individuals can't understand what they
hear. And in the simplest way, it's because the ears
and the brain don't fully coordinate. So you may have
(14:51):
completely normal hearing, but the way that your brain is
processing what's going in doesn't agree with each other, so
to speak. And a lot of the time, people think
it's just children that suffers from APD, but actually, there's
a lot of adults that also suffer from APD. And
a lot of the time, we could have people that
(15:12):
come through the clinic that's got completely normal hearing and
we do this audiogram, we've talked about this lots of
times, and you say to them, even though they come
to you and they say, " I really can't understand what
people are saying to me, can't understand that background noise. It's just
not clear. I have to really listen with effort and
(15:34):
it's tiring. And even then, I get things wrong." And
you do this hearing test and you say to them, "
Actually, your hearing's fine." And don't think beyond that audiogram,
because for APD, an audiogram will definitely not diagnose that. And I
think my question to you is how often in the
conversations that you've had within your network do you think
(15:56):
that actually happens, where somebody says, a hearing care professional,
whether it's an audiologist or a hearing dispenser, " Your hearing's fine,"
and then they don't get the help that they need?
Professor Andrew Hugill (16:07):
Well, I think that's far more common than people realize
and I think the people who are on the receiving end, as it were, the
people with APD tend to just then go quiet, confronted
with the factual evidence that their hearing is normal. There's
a tyranny of otological normalcy, if I can put it
(16:28):
like that, which drives people away. You can observe similar
tendencies in some of the other areas I know we're
coming on to like neurodivergence as well, where there's just
this awareness that there's no support anyway. If you say, "
Well, my hearing's normal, but I can't make sense of
what I hear," what are you going to do about that? What are the
(16:50):
therapies? This kind of APD can be caused by all
sorts of things. Often childhood trauma of some kind, birth
trauma, so physical problems that then have consequences for hearing.
And I know quite a few people who are in
that category with what you would call classical APD as
(17:13):
opposed to the kind of processing difference that you would
find with autism, let's say. But there's some overlap between
them, I think. There are some situations where you've got
people with normal hearing who can't make sense of what
they hear, where there isn't a physical cause either and
it's probably more widespread than we realize. It would still
be classified as rare, I think, but by the medical
(17:36):
profession. But as soon as someone says, " Oh, something's rare,"
I think back to when I was a child, almost
nobody was diagnosed autistic and now, how many autistic people
are there in the UK? Over a million, I would
(17:56):
say and the number of diagnoses is growing all the
time. So this is about, I think, awareness of the
problem and an ability to understand what's happening and I
think audiology can really help there if people can listen.
I'm not sure what an audiologist can offer somebody other
than perhaps a reference to someone who might be able
(18:19):
to help. I think in terms of classical audiology, there's
probably not much that can be done, but it's important to
be aware of this kind of issue and to acknowledge it
when it appears.
Julia van Huyssteen (18:30):
Yeah. I think although there isn't a cure for APD,
obviously, we need to go beyond thinking about our normal clinic routine and
obviously, have the initiative to understand when somebody presents with
a normal audiogram to do some further screening, because there
is some tests where you can actually screen for APD.
(18:51):
And then there are some activities where you can help
improve their listening and concentration, so it's called auditory training.
So there is research, although new, that backs up that
auditory training can help improve. Not for everybody. A bell
curve is in there for people that it works for, people
that it doesn't and people that does really well. But you are right,
(19:15):
so your standard audiology practice may not do these extra
steps and this auditory training, because they focus on the
usual patient pathway. And of course, one thing I can
say from personal experience with APD clinics, in pediatrics, granted,
is that reducing background noise is a big thing for
(19:37):
people with APD. And if you can do that in
any way, whether that is with an assistive listening device
of some sort helps, you've got to go the extra
steps to identify that this is a thing and then be
able to implement the rehabilitation thereof. Now, I want to
go to some more slightly unfamiliar topics like misophonia and
(20:01):
diplacusis. You mentioned that some of these are really, really
new, so in the last 20 years, only we became
aware of it. I think we already talked a little bit
about misophonia before, which is, of course, a neurological difference
and you defined it quite nicely previously, but for the
sake of those people that may not have listened to
the first episode, do you want to just explain it
(20:22):
again for us?
Professor Andrew Hugill (20:23):
Yeah. So misophonia is basically a negative reaction to a sound.
It's one of those things that most people will recognise
to some extent. Classically, fingers being dragged down a blackboard
causes a lot of people to have it. There you
go. You've just reacted.
Julia van Huyssteen (20:40):
Cringing.
Professor Andrew Hugill (20:42):
Cringing. So that's a kind of misophonia in the sense
that you hate that sound. That's what the word means.
Literally, a hating of certain sounds. But people with misophonia,
identified as such medically, are people for whom sounds are
not just unpleasant. They are really physically painful and completely
(21:04):
intolerable. A lot of the sounds tend to be sounds
produced by other people. Sound of eating and crunching and
I heard a BBC documentary about this the other day
and they actually played some of the sounds as part
of the documentary and you think, "No. That is not the
way to go if you want misophonics to listen to
your broadcast. Don't play them the sounds that they have a problem with."
Julia van Huyssteen (21:27):
Oh, dear.
Professor Andrew Hugill (21:27):
But misophonia, I think, is one of those things that has
become a very hot topic right now, because I think,
again, people are realizing that it's far more extensive than
has previously been acknowledged. The misophonic community overlaps somewhat with
(21:47):
the autistic community and with the hyperacusis community, but they are
distinct from one another. Misophonia and hyperacusis are not the same thing.
So I think with misophonia, it's much more about a
psychological state, a reactive state to the meaning of the
sound to you than about necessarily the loudness of the
(22:08):
sound or some other inherent audio property. It's an emotional
and psychological reaction, misophonia.
Julia van Huyssteen (22:18):
This is interesting, because you've really described how distressing this
can be. Well, actually misophonia was first recognized in 2001,
actually, officially, but you know what? It's still not in a DSM-
5 or any other similar manual. Now, that, to me,
(22:38):
is bonkers. So they call it the neglected disorder. As
we just said, it can cause problems in school, work,
your social life, your family. I, for example, had an ex-
work colleague that had misophonia and back then, we didn't
label it as misophonia and I'm talking my early 2000 careers.
(23:01):
And she really struggled with people repetitively clicking their pens,
click, click, click, click, click, click, so we had to replace all of
the pens in the department with just your standard big
pens, but we had to make it a rule throughout
the office that we didn't have that, because you could
see that it hurt her ear when somebody was clicking
the pens. Now, that is an example of how it
(23:23):
can affect somebody and everybody else around them as well,
because all of us in the office had to adjust
to help her with this particular response that she had.
That is how impactful it can be.
Professor Andrew Hugill (23:37):
Well, I think in terms of the Equality Act of
2010, what that will be called is a reasonable adjustment,
replacing all the pens. It's a reasonable adjustment. It's not
expensive, it's easily achieved and it doesn't impact on people in
any significant way. You're still able to use a pen.
But it obviously impacts on your colleague very profoundly, because it is
(23:59):
the difference between being able to work and not being
able to work. We're going to see more and more
of this as people become aware that misophonia is a
recognized condition and start to be more open about their
own misophonia. Because I think it takes quite a bit
of courage to say that you have a misophonia. Rather
(24:25):
like your colleague, I imagine that there's a mixture of, "
Yeah. Well, I have to say about this, because it's
a real thing," but at the same time, aware of
the likely reaction, which is, " Oh, come on. Clicking a
pen? Why are you bothered about that?" That's what you're frightened
of is that response and so it does take courage to
(24:47):
admit to these things.
Julia van Huyssteen (24:49):
There are also not so embedded, I guess, treatment methods
that people try, but I think the first thing is,
like you say, to recognize that that is a thing. And
then I think working on from that is to either make
this reasonable adjustment or to help people, if possible, with
(25:10):
some coping strategies. I know that there's a majority of
smaller studies done on the subject that are focused on
the use of maybe something like tinnitus retraining therapy or
cognitive, CBT, behavioral therapy. Some even tried exposure therapy. There's
no real substance in terms of what definitely works and
(25:31):
what we should do moving forward and that's because it's
so new. But it is worth mentioning that people are
starting to realize this is a thing and we need to
try and not just make some adjustments ourselves, but also
think about how we approach helping people with it.
Professor Andrew Hugill (25:48):
I think all the therapeutic support and interventions potentially are
valuable, but of course, only to the extent that they
work for that person. Talking personally, I've many times have
been advised to try mindfulness and have found it a
absolute nightmare from an autistic perspective, because what it asks
(26:12):
you to do is to become aware of your situation,
intensely aware of the moment, living in the moment. And
of course, for an autistic person who already has sensory
overload to become even more aware of what's happening to
your body and the senses and the environment around you
(26:32):
is basically a instant shutdown. But that's not to say
that I think mindfulness is bad. It's just it doesn't
work for me and I think that is the key, is
to find the therapies that work for the people concerned.
I think, yes, tinnitus therapies, some of them help, some
of them don't. If it helps, use it. Why not?
(26:55):
But I would be wary of something that masked a
problem that then stored up a bigger problem later on,
if that makes sense.
Julia van Huyssteen (27:04):
Agreed. And many individuals can't isolate exactly one hearing difference.
It's often more than one thing that is neurodivergent. You
mentioned it before that somebody with autism might also struggle
with misophonia and how do you separate that? It's almost
very tricky to actually do that, so I think we
(27:25):
need to understand these mechanisms a bit better, but we're
having the right conversations at the moment, but you know
what it's like. These things unfortunately take time and tinnitus
is a good example in terms of research. There's so
much around tinnitus available and potential causes and potential therapies,
(27:46):
yet the NICE guidelines, they only endorse a hearing aid
if there's a hearing loss. And CBT, yet you've just talked
about the fact that there's other sound therapies available, for
example, but it's not supported by the National Institute of
Excellence guidelines, because there's not enough evidence to actually all
come together and say, " This works." And that's the issue,
(28:09):
so we've got people-
Professor Andrew Hugill (28:09):
Well, yeah, I agree, but also the problem they have is it's not
generalizable. This is back to aural diversity again. This idea
that there's a one- size- fits- all solution in the
hearing domain seems to be very problematic and hearing is
such a unique thing to each person. And so whatever
(28:31):
we're talking about, there's always going to be an element
of individual adjustment that goes on. And this applies even in the
most common differences. There's always this component of individual adjustment.
And in some senses, audiology does recognize that, because you
can adjust your hearing aids now in a way that
15, 20 years ago, you couldn't. You could maybe turn up
(28:53):
the volume or adjust the treble. That was about it.
But now, you can actually do a lot of personalizing.
So there's obviously a recognition of this, but I think
when it comes to conditions like misophonia, yeah, I think
it's very hard for NICE to issue a set of
standards for something that's so variable and so personal.
Julia van Huyssteen (29:17):
Thought provoking, hey?
Professor Andrew Hugill (29:19):
Yeah.
Julia van Huyssteen (29:20):
So the next question is actually on something that's probably
even more rare or unknown of and probably will be something that
a lot of our listeners will never have heard of
and it's something that you have yourself and that's diplacusis,
which of course, is a hearing disorder whereby a single
auditory stimulus is perceived as different pitches between two ears,
(29:41):
important For musicians, and it's typically experienced usually as a
symptom of sensorineural hearing loss or tinnitus, but not necessarily. I
just want to confirm, I guess, for our listeners that
this is different to a cochlear dead region. So with
a cochlear dead region, which is the area in the cochlea
where there's no function whatsoever, sometimes going back to the
(30:02):
audiogram, you can get a response in different frequencies, but
actually, you can't discriminate between the pitch of those frequencies,
because you have a cochlear dead region. This is different,
because talking about interaural differences.
Professor Andrew Hugill (30:19):
So again, this is another one of these ones that
is classified as rare, but I think it's far more
common than people realize. And I think part of the reason
why people don't realize how common it is is because
most people are not trained musicians, so not used to
listening in that way. If you've got diplacusis and you're
(30:39):
hearing two different pitches from a single pitch source, you
tend to just ignore that and try and work past
it, but if you're a musician, that becomes very debilitating.
So for me, the differences between the two ears vary
in terms of pitch and so the intervallic difference, as
we say in music, anything up to a minor third of
(31:02):
detuning between the two ears, but note by note, it
varies. And I actually built an instrument that reproduces what
I hear when a normal piano is played and I
did this in quite a crude way, which will abuse
audiologists. I blocked up one ear and then played notes
and sang them into a pitch meter and with my
(31:25):
good ear, which is my left ear, my pitch was
pretty well exact. And then when I blocked up my
good ear and did the same exercise with my bad
ear and there was all this detuning in the way that I sang and I
was able then to take those measurements and transfer them
into a digital instrument, which I call the diplacusis piano
(31:46):
and I wrote a set of studies for diplacusis piano
so that people could hear what I would hear if
a normal piano is played. So I think this is a phenomenon
that does apparently affect musicians more than the rest of
the population, but actually, I suspect affects the rest of
the population just as much. And I think certainly with
(32:06):
Ménière's, there are four standard symptoms that you have to
have to be diagnosed with Ménière's. Balance issue, tinnitus, hearing
loss and aural fullness, so it's the sensation of pressure of
fullness in the ear, but actually, diplacusis should be the
fifth one, because I think everybody who has Ménière's also has
(32:27):
diplacusis to some extent. And I did confirm this with
my wonderful consultant, Professor Peter Ray, who very casually said, "
Oh, yeah. Diplacusis is something else that people get with Ménière's."
It's like, " That's the most important thing. Why isn't that part of the diagnostic
criteria?" It's another one of those conditions that I think
(32:48):
needs more research and again, I think we're becoming more
aware of it now, partly thanks to the efforts of
the Aural Diversity network.
Julia van Huyssteen (32:57):
So let's campaign for it being the fifth symptom for
diagnosis for Ménière's. Let's do that.
Professor Andrew Hugill (33:06):
One other thing I should say is people have said
to me, " If that's the problem, why didn't you just
block up one ear and listen with one ear rather
than listening with two ears?" And the weird thing is
that if I do that, I still have the diplacusis.
So you think that this is about the signal hitting
the two ears and one ear being more damaged than the other and so
(33:30):
that is what causes this perceptual difference and that probably is
it, but I think what's going on, and this is
very much amateur theory time, is that my brain has now
understood the differences between the two and so even when
I listen to music without the bad ear, I still
hear the diplacusis.
Julia van Huyssteen (33:51):
Yeah. That's interesting. That's really, really interesting. Oh, wow. So I think the
last complicated one to end on, and a disclaimer here,
I know you've said at the start you're not a
hearing scientist, although, oh my goodness, you know so much
about the topic, credit to you, so the last thing that
I would like to talk about is palinacousis. I think I'm saying
(34:13):
it right. I've only ever read it and that's where
sounds repeat after inaudibility and that's in the simplest form. So I've
got two parts to this question. Is this different to
auditory hallucinations? That's part one. And part two is when I
prepared for this podcast, I stumbled across quite a lot
(34:34):
of different causes of palinacousis, so the majority being physiological,
which I think we can probably tick that box off,
but there was definitely some studies that also mentioned schizophrenia,
so maybe linking in with the first question about auditory
hallucinations. I know that you obviously know a bit on
(34:54):
the topic, but what is your insights and your thoughts
on the links of these and what it is.
Professor Andrew Hugill (34:59):
Yeah. Strictly speaking, it is a form of auditory hallucination
in the sense that you're hearing sounds that aren't there. You're
hallucinating sounds that aren't there. But the difference, as I understand it,
is that in palinacousis, there was a sound and that
it continues after the sound has actually stopped. Whereas in
(35:23):
an auditory hallucination, there is no sound. You just believe
there's a sound. There was nothing that preceded it. So
a typical auditory or musical hallucination would be you think
you hear a record playing and you believe you're hearing
that and there is no record playing. Whereas with palinacousis,
(35:44):
you might have listened to a record and the record's
stopped, but you think it's continued. And I think that's
the major difference, that the brain believes that it's hearing
something continuing in palinacousis. Like you say, this, again, would
be classified as rare. It's something that traditionally, is a result
(36:08):
of lesions in the brain. Also, epilepsy, you get this
phenomenon. As with all the other things, I'm going to
suggest that it's a bit more common than people realize.
I still wouldn't say it's common. I think it is
very unusual, but I think in various kinds of psychological
conditions, it does manifest as part of perhaps a suite
(36:31):
of manifestations of that condition and probably gets overlooked, partly
because it's muddled in with a load of other stuff, but I think it is a little more common than perhaps people realize.
Julia van Huyssteen (36:38):
Yeah. I think, again, this refers back to the standard
protocol that most GPs or ENTs or audiologists would follow.
It's just not something that you would ask about specifically.
It's just not part of the case history and like you say,
actually, if we do, we might start to understand just
(37:02):
how often this happens. And as you say, part of a complex
amount of symptoms that manifest together. But yeah, I've not
come across this personally in my career, but that's because
I've never asked.
Professor Andrew Hugill (37:14):
Yeah. I think for an audiologist, it's something you might
have in the back of your mind and you may
never ever encounter it, but on the day that you
do encounter it, you need to be aware of it and
you need to know what that is. And as you
say, ask people, because often, if you ask people what
their experiences is, you'll be surprised by the answers, because
(37:38):
people will have these very unique experiences. If you look
back, people like Oliver Sacks writing about amusia and these
conditions that at one time were regarded as really unusual psychological
phenomena. And then gradually, over time, as awareness grows, they
(37:59):
start to become a little more prevalent than they were
previously. They're still unusual. A genuine amusia is unusual, but
it's probably more prominent than we previously thought.
Julia van Huyssteen (38:14):
Mm- hmm. That's tone- deaf, right?
Professor Andrew Hugill (38:15):
Yeah. Well, the colloquial thing is tone- deaf. Yeah. The
inability to distinguish, for example, between high and low sounds.
Again, that's a neurological, brain processing thing.
Julia van Huyssteen (38:29):
I wanted to probe a little bit about whether there's
any treatment for palinacousis. And this is my word now,
palinacousis. I've got to try and learn to say it properly, because
obviously, if we identify it, if we ask about it,
we identify that that's something that we need to think
about within our clinics, then where do we go from
(38:49):
there? What is-
Professor Andrew Hugill (38:50):
Well, I'm not aware of any specific treatment for palinacousis, but
I'm hardly an expert on this, but I would imagine
that it would form part of some general treatment for
schizophrenia or for other psychological conditions. It's possible that it
(39:10):
would be incorporated into other forms of treatment that are
not aimed specifically at that condition, because those other aspects
of the condition are not aural necessarily. They don't make
their way into aural diversity, so palinacousis here is sort
of sitting out of context. It should really be seen
(39:31):
in terms of certain forms of mental issues and probably
would make its way into the DSM under that banner,
rather than under any particular aural banner. But for aural
diversity, given what we're trying to show, it's important to
include it, because I'm trying to show the range of
hearing difference.
Julia van Huyssteen (39:52):
Exactly. Exactly. Exactly. And I think that's a really strong
point for us to bring it all together. I am
so thankful, again for you, Professor Hugill, for talking about
aural diversity as passionately as you have been. It was
perfect and it really got the message across. Today, we
(40:19):
delved a little deeper into some of the complex hearing
disorders that can influence our hearing experiences like tinnitus, auditory
processing disorder, misophonia, diplacusis, et cetera and one of the main
takeaways for me is that any industry associated with hearing
in any way have a responsibility to raise awareness on
(40:40):
neurodiversions and aural diversions for how they approach individuals with
communication, music and environmental sounds. It is certainly clear that
our hearing system is complex and that we need to have a patient-
centered care approach that considers any of these hearing differences
in order to give the most appropriate support. If you
(41:01):
are interested in any further information on Aural Diversity, you
can connect with the Aural Diversity family on their website, auraldiversity.
org. If you found any of what you've heard today
helpful, please tell your friends, family and colleagues, so as
many people as possible can share the knowledge. And if
there's a topic you think we should be covering, drop
us an email to the address on the show page.
(41:23):
If you are just discovering this series, we've already talked
to legendary audiologist, Dr. Gus Mueller about hearing aid fitting
standards. And for series two, we had four UK industry
experts that talked about audiology- led wax removal here in
the UK. We also had Dr. Barbara Weinstein talking about
the audiologist's role in dementia. You can go back and
(41:44):
download those previous episodes for free wherever you get your
podcasts from and remember to follow, so you don't miss
any future episodes. This is a Fresh Air Production by
Oli Seymour for Signia UK and Ireland. Until next time, goodbye
and thank you.
Hello and welcome back to Sounding It Out. As we
always say, a podcast dedicated to audiology and hearing health,
brought to you by Signia UK and Ireland. I'm Julia
van Huyssteen, your host, and I'm so happy to be
back with a second of two new episodes in series
four. I'm the head of audiology at Signia UK and
(00:30):
Ireland and hearing health is really a very great passion
of mine. I'm really happy to say that these podcasts
are Signia- neutral, so that everybody with an interest in
hearing health or audiology can benefit and enjoy them. For
this series, we are going beyond the audiogram and we
are exploring individual experiences of hearing. My guest speaker is
(00:52):
Professor Andrew Hugill, who is the deputy director at the
Institute for Digital Culture at the University of Leicester, where
he has also founded the Creative Computing program. His background
is in music, in which he is a professor and
he's an active composer and musicologist. Throughout his career, he
worked across artistic and scientific disciplines. As I said on
(01:14):
our previous episode, Professor Hugill has three invisible disabilities and
he uses these as a platform to work actively in
these three areas to improve lives for others with the
same or similar conditions. He's autistic, which includes social and
sensory issues, but absolutely no learning difficulties. He has severe
(01:34):
hearing loss, including tinnitus and diplacusis and he also has Ménière's
disease, a balance disorder, which caused the hearing loss in
the first instance. And these all contribute to his passion
for aural diversity and hearing differences that we introduced in
our first episode. So to summarize, in our first episode,
we introduced things like the auditory system, animal hearing and
(01:57):
also technology. Today, we will explore how invisible hearing disabilities
or difficulties may affect people's hearing experiences and how we
can influence the perception and appreciation of these difficulties and
therefore, ultimately, providing appropriate support. Professor Hugill, welcome back and
(02:19):
thank you once again for joining me for this podcast.
Professor Andrew Hugill (02:21):
Thank you. It's a pleasure.
Julia van Huyssteen (02:23):
Professor Hugill, here is my first question to you. Let's
start by asking you to once again explain the terms
neurodivergent, which you've already done during the first episode, but also aural
divergent, because I think this will tee us up quite
nicely for the rest of the episode. We introduced aural
diversity in our previous episode, but I feel we are
(02:45):
ready to do a bit more of a deep dive
into those terms.
Professor Andrew Hugill (02:49):
So aural divergence and neurodivergence both refer to deviations from
a predominant type. So in the case of neurodivergence, it would be
a deviation from the predominant neurotype. So the majority of
people are neurotypical. That's to say their brains are different,
(03:11):
but they follow a broadly similar pattern. And then you
have groups who have a marked difference, a neurodivergence, which
is basically something you're born with. It's something that characterizes
you and makes you who you are. In my case,
you've mentioned autism. Autism is a difference in brain type.
(03:35):
It's a different way of wiring the brain, if I can
put it like that. The analogy I often use, it's
like the difference between a Windows operating system and a
Mac operating system. They both do the job of computing,
but they do it in very different ways and things
that work on a Windows computer will not necessarily work
(03:56):
on a Mac computer and vice versa. So it's a
bit like that. You see the world, you experience the
world differently. And the same goes for are aural divergence.
You hear the world differently. And this underpins a lot
of the terms that you've used. The differences that are
the result of some kind of brain or neurological processing.
Julia van Huyssteen (04:21):
I love that analogy and that's definitely something that I
will use moving forward when I'm talking to colleagues and
patients. That's brilliant. It's fantastic, because it just makes sense.
It really does make sense if you put it that
way. We're probably ready at this point to delve a
little bit more into this neurodivergent and aural divergent factors
or conditions or hearing differences and I think it's probably
(04:44):
best for us to start with something that most people
will have heard about before and that is, of course,
tinnitus, which of course, you've shared you also have. We
briefly touched on it and obviously, that coexists with your Ménière's
disease as well. And I think for our listeners, for
those that are not in the hearing industry and that
are just enjoying hearing about hearing and aural diversity, the
(05:07):
shortest possible definition I have really is that tinnitus is
a sound or a perception of sound internally that isn't
delivered externally. So the sound that you hear isn't present
from the outside or externally. And it often involves sounds
(05:27):
like clicking or buzzing, roaring, whooshing, or whistling. Of course,
we have to acknowledge people's frustration with tinnitus. We've got
to acknowledge how hopeless people can feel, the anxiety that
goes with it, sleeping problems and we've got to support
(05:47):
people through those two in terms of their experience with
tinnitus. In addition to that, we can also have a
bit of a different perspective when we talk about tinnitus
in terms of where hearing and sound is important to
the career and the hobbies and things like music. So
I think from both yourself and the people that you
(06:08):
talk to through Aural Diversity and through your music experiences,
I'm wondering how tinnitus impacts musicians where pitch and tone
and timbre and volume, all of that is so important.
And then yet, you've also got this sound inside your
head that is going on at the same time while
(06:28):
you're trying to deal with the external sounds so specifically.
What's your thoughts on that?
Professor Andrew Hugill (06:34):
Well, I think for musicians, it can be extremely debilitating
and there are quite a lot of prominent examples in
all fields of music actually, of musicians who've had to
basically give up their careers because of tinnitus. And those
who've managed to find ways of carrying on often do
(06:55):
so in ways that make adjustments for the tinnitus that
themselves affect the musical production. I think it's incredibly common
in the music industry. Interestingly, as much in the classical
music industry as in the rock and pop, people tend
to assume that if you're exposed to loud noises for
long periods, that will give you tinnitus, which it certainly
(07:17):
will, but they tend to think that, "Oh, the rockers are going
to have the worst tinnitus, because they make the loudest
music." But actually, if you think about an instrument like
a violin or a piccolo, where the sound is being
produced very close to your ear and is often connected to
your body with a physical connection, so you have the
(07:37):
vibration, the bone conduction, as well as the sound. And
the sounds are intense, so it's not just the volume
of the sound. It's the intensity of the sound. These people
often experience great problems with tinnitus. This is my crude
understanding of tinnitus. I'm very aware that there's a lot
(07:57):
of research and it's still very active. This is, I
think, what's happening and this is why it's triggered not
just by physical input. Loud noises and so on will
trigger tinnitus, but it's also very much affected by your
psychological condition at the time. So if you are tired,
(08:20):
if you've consumed a lot of alcohol, if it's the
middle of the night and you've woken up, these are
the times when tinnitus really intrudes in a major way.
So perceptually, it seems louder, it seems more insistent, more
prominent. One other interesting thing about tinnitus that many people
(08:40):
in the network have talked about is that if you
use the word tinnitus, it makes your tinnitus worse. In
fact, we published a book called Aural Diversity a few
years ago, which contained essays by people from the network.
And Patrick Farmer wrote an essay about tinnitus, which he
experiences, but rather than use the word tinnitus, he used
(09:02):
a wavy line. So it's like a symbol, like a
tilde. I thought that was a really clever idea, to avoid
the actual word.
Julia van Huyssteen (09:14):
So that's really interesting. I think from my point of
view, I'm probably going to say something that isn't achievable,
but we want to promote healthy hearing behaviors as much
as possible within our industry for musicians, for everybody. Musicians
in particular. And I don't know how realistic it is
to talk about ear protection, but I do know that
(09:34):
nowadays, we've got some really advanced, different types of protection
that will attenuate sounds very specifically in terms of both
the frequency response that it attenuates and also the amount
of gain that is reduced by.
Professor Andrew Hugill (09:50):
Yes. Well, it's very important for musicians to use hearing
protection. In rehearsals, in concerts, every musician should have flat
frequency response earplugs that they use as a standard. And
not just with amplified music. With acoustic music too. I've
written about this. I wrote a book called The Digital
(10:11):
Musician, which was first published in 2008. It's now in
its third edition and it's a standard textbook in most music
courses. In that book, I have a whole section on
hearing protection. I think it's that important. And particularly in
an era of in- ear buds, where people are listening
to music with these inserts into the ear, I think
(10:35):
it's generally accepted that it's roughly 40 minutes before the
acoustic reflex gives up basically and you start to actually
damage your hearing. So if you're playing for two hours,
you are actually damaging your hearing at that point, or
(10:57):
if you are listening to music for two hours, you
are damaging your hearing. And initially, you won't notice that
when you're young, but gradually, it will become more and
more evident and it's cumulative and there's no going back.
Once it's damaged, it's damaged. So that hearing protection is
tremendously important for musicians. As for audiology and improving hearing
(11:20):
health, I am aware that for audiologists, their worst patients
are musicians, because musicians come in with a whole lot
of assumptions and things, which the audiologist basically doesn't deal
with or cannot deal with. It's not part of what
they're there to do. But if I can just politely
(11:44):
to my audiology colleagues say that from a musician's point
of view, the experience of dealing with an audiologist is
quite frustrating, because we know, for example, that the audiometric
tests that you do do not cover even anything below
middle C on the piano. Basically, you're already focusing on
(12:07):
an area of hearing that doesn't include most of what
I deal with as a musician. I know why you're
doing that. It's because your focus is speech. The whole
audiology and hearing aid industry is focused on speech, but actually,
if you're a musician, that's not your primary focus. And
we would probably argue that there are more richness in
(12:31):
things that are not speech in life than in things
that are just speech. Musical sounds are quite rich. I
have actually suggested at an audiology conference once before that
all audiology degrees should include a module on music and
this was greeted with a fair degree of hostility. Someone said, "
(12:51):
Does that mean opticians should all look at paintings?" And
I said, " Well, yeah. I think it does." Just because
I think people need to be aware of the full
spectrum of hearing and music is one of those things
that really, particularly classical music, deals with the complete range
of audible frequencies, amplitudes and so on. It's not that you're
(13:14):
necessarily going to change your audiometry radically for this, but
in terms of supporting the patient and enhancing quality of
life, having that awareness would be a great advantage, I think.
Julia van Huyssteen (13:28):
Mm- hmm. Fully, fully, fully agree with you. I acknowledge
these frustrations and I also understand that as an industry,
we need to address those two.
Professor Andrew Hugill (13:40):
There is a technical problem, of course, with lower frequencies,
which is that hearing aids can't actually reproduce them, because apart
from the fact there's a vent in a hearing aid,
which means that no base frequencies are going to be
contained, the wavelengths are just too long. So there's a
technical reason why you wouldn't consider that, but my argument
(14:00):
is not just about fitting hearing aids. My argument is
about the whole patient and this is aural diversity in
action. Yeah, hearing aids are hearing aids, but there are
other forms of hearing, other forms of hearing device, other
forms of hearing the world and I think an audiologist
needs to take an interest in those as well as
(14:21):
in the more traditional, " Let's fit a hearing aid, so that
this person can hear speech better."
Julia van Huyssteen (14:27):
No. Agreed. Agreed 100%. We're definitely aligned on that. So
my next question is on a topic that I'm also
extremely passionate about and that is auditory processing disorder, or
short, APD, which is where individuals can't understand what they
hear. And in the simplest way, it's because the ears
and the brain don't fully coordinate. So you may have
(14:51):
completely normal hearing, but the way that your brain is
processing what's going in doesn't agree with each other, so
to speak. And a lot of the time, people think
it's just children that suffers from APD, but actually, there's
a lot of adults that also suffer from APD. And
a lot of the time, we could have people that
(15:12):
come through the clinic that's got completely normal hearing and
we do this audiogram, we've talked about this lots of
times, and you say to them, even though they come
to you and they say, " I really can't understand what
people are saying to me, can't understand that background noise. It's just
not clear. I have to really listen with effort and
(15:34):
it's tiring. And even then, I get things wrong." And
you do this hearing test and you say to them, "
Actually, your hearing's fine." And don't think beyond that audiogram,
because for APD, an audiogram will definitely not diagnose that. And I
think my question to you is how often in the
conversations that you've had within your network do you think
(15:56):
that actually happens, where somebody says, a hearing care professional,
whether it's an audiologist or a hearing dispenser, " Your hearing's fine,"
and then they don't get the help that they need?
Professor Andrew Hugill (16:07):
Well, I think that's far more common than people realize
and I think the people who are on the receiving end, as it were, the
people with APD tend to just then go quiet, confronted
with the factual evidence that their hearing is normal. There's
a tyranny of otological normalcy, if I can put it
(16:28):
like that, which drives people away. You can observe similar
tendencies in some of the other areas I know we're
coming on to like neurodivergence as well, where there's just
this awareness that there's no support anyway. If you say, "
Well, my hearing's normal, but I can't make sense of
what I hear," what are you going to do about that? What are the
(16:50):
therapies? This kind of APD can be caused by all
sorts of things. Often childhood trauma of some kind, birth
trauma, so physical problems that then have consequences for hearing.
And I know quite a few people who are in
that category with what you would call classical APD as
(17:13):
opposed to the kind of processing difference that you would
find with autism, let's say. But there's some overlap between
them, I think. There are some situations where you've got
people with normal hearing who can't make sense of what
they hear, where there isn't a physical cause either and
it's probably more widespread than we realize. It would still
be classified as rare, I think, but by the medical
(17:36):
profession. But as soon as someone says, " Oh, something's rare,"
I think back to when I was a child, almost
nobody was diagnosed autistic and now, how many autistic people
are there in the UK? Over a million, I would
(17:56):
say and the number of diagnoses is growing all the
time. So this is about, I think, awareness of the
problem and an ability to understand what's happening and I
think audiology can really help there if people can listen.
I'm not sure what an audiologist can offer somebody other
than perhaps a reference to someone who might be able
(18:19):
to help. I think in terms of classical audiology, there's
probably not much that can be done, but it's important to
be aware of this kind of issue and to acknowledge it
when it appears.
Julia van Huyssteen (18:30):
Yeah. I think although there isn't a cure for APD,
obviously, we need to go beyond thinking about our normal clinic routine and
obviously, have the initiative to understand when somebody presents with
a normal audiogram to do some further screening, because there
is some tests where you can actually screen for APD.
(18:51):
And then there are some activities where you can help
improve their listening and concentration, so it's called auditory training.
So there is research, although new, that backs up that
auditory training can help improve. Not for everybody. A bell
curve is in there for people that it works for, people
that it doesn't and people that does really well. But you are right,
(19:15):
so your standard audiology practice may not do these extra
steps and this auditory training, because they focus on the
usual patient pathway. And of course, one thing I can
say from personal experience with APD clinics, in pediatrics, granted,
is that reducing background noise is a big thing for
(19:37):
people with APD. And if you can do that in
any way, whether that is with an assistive listening device
of some sort helps, you've got to go the extra
steps to identify that this is a thing and then be
able to implement the rehabilitation thereof. Now, I want to
go to some more slightly unfamiliar topics like misophonia and
(20:01):
diplacusis. You mentioned that some of these are really, really
new, so in the last 20 years, only we became
aware of it. I think we already talked a little bit
about misophonia before, which is, of course, a neurological difference
and you defined it quite nicely previously, but for the
sake of those people that may not have listened to
the first episode, do you want to just explain it
(20:22):
again for us?
Professor Andrew Hugill (20:23):
Yeah. So misophonia is basically a negative reaction to a sound.
It's one of those things that most people will recognise
to some extent. Classically, fingers being dragged down a blackboard
causes a lot of people to have it. There you
go. You've just reacted.
Julia van Huyssteen (20:40):
Cringing.
Professor Andrew Hugill (20:42):
Cringing. So that's a kind of misophonia in the sense
that you hate that sound. That's what the word means.
Literally, a hating of certain sounds. But people with misophonia,
identified as such medically, are people for whom sounds are
not just unpleasant. They are really physically painful and completely
(21:04):
intolerable. A lot of the sounds tend to be sounds
produced by other people. Sound of eating and crunching and
I heard a BBC documentary about this the other day
and they actually played some of the sounds as part
of the documentary and you think, "No. That is not the
way to go if you want misophonics to listen to
your broadcast. Don't play them the sounds that they have a problem with."
Julia van Huyssteen (21:27):
Oh, dear.
Professor Andrew Hugill (21:27):
But misophonia, I think, is one of those things that has
become a very hot topic right now, because I think,
again, people are realizing that it's far more extensive than
has previously been acknowledged. The misophonic community overlaps somewhat with
(21:47):
the autistic community and with the hyperacusis community, but they are
distinct from one another. Misophonia and hyperacusis are not the same thing.
So I think with misophonia, it's much more about a
psychological state, a reactive state to the meaning of the
sound to you than about necessarily the loudness of the
(22:08):
sound or some other inherent audio property. It's an emotional
and psychological reaction, misophonia.
Julia van Huyssteen (22:18):
This is interesting, because you've really described how distressing this
can be. Well, actually misophonia was first recognized in 2001,
actually, officially, but you know what? It's still not in a DSM-
5 or any other similar manual. Now, that, to me,
(22:38):
is bonkers. So they call it the neglected disorder. As
we just said, it can cause problems in school, work,
your social life, your family. I, for example, had an ex-
work colleague that had misophonia and back then, we didn't
label it as misophonia and I'm talking my early 2000 careers.
(23:01):
And she really struggled with people repetitively clicking their pens,
click, click, click, click, click, click, so we had to replace all of
the pens in the department with just your standard big
pens, but we had to make it a rule throughout
the office that we didn't have that, because you could
see that it hurt her ear when somebody was clicking
the pens. Now, that is an example of how it
(23:23):
can affect somebody and everybody else around them as well,
because all of us in the office had to adjust
to help her with this particular response that she had.
That is how impactful it can be.
Professor Andrew Hugill (23:37):
Well, I think in terms of the Equality Act of
2010, what that will be called is a reasonable adjustment,
replacing all the pens. It's a reasonable adjustment. It's not
expensive, it's easily achieved and it doesn't impact on people in
any significant way. You're still able to use a pen.
But it obviously impacts on your colleague very profoundly, because it is
(23:59):
the difference between being able to work and not being
able to work. We're going to see more and more
of this as people become aware that misophonia is a
recognized condition and start to be more open about their
own misophonia. Because I think it takes quite a bit
of courage to say that you have a misophonia. Rather
(24:25):
like your colleague, I imagine that there's a mixture of, "
Yeah. Well, I have to say about this, because it's
a real thing," but at the same time, aware of
the likely reaction, which is, " Oh, come on. Clicking a
pen? Why are you bothered about that?" That's what you're frightened
of is that response and so it does take courage to
(24:47):
admit to these things.
Julia van Huyssteen (24:49):
There are also not so embedded, I guess, treatment methods
that people try, but I think the first thing is,
like you say, to recognize that that is a thing. And
then I think working on from that is to either make
this reasonable adjustment or to help people, if possible, with
(25:10):
some coping strategies. I know that there's a majority of
smaller studies done on the subject that are focused on
the use of maybe something like tinnitus retraining therapy or
cognitive, CBT, behavioral therapy. Some even tried exposure therapy. There's
no real substance in terms of what definitely works and
(25:31):
what we should do moving forward and that's because it's
so new. But it is worth mentioning that people are
starting to realize this is a thing and we need to
try and not just make some adjustments ourselves, but also
think about how we approach helping people with it.
Professor Andrew Hugill (25:48):
I think all the therapeutic support and interventions potentially are
valuable, but of course, only to the extent that they
work for that person. Talking personally, I've many times have
been advised to try mindfulness and have found it a
absolute nightmare from an autistic perspective, because what it asks
(26:12):
you to do is to become aware of your situation,
intensely aware of the moment, living in the moment. And
of course, for an autistic person who already has sensory
overload to become even more aware of what's happening to
your body and the senses and the environment around you
(26:32):
is basically a instant shutdown. But that's not to say
that I think mindfulness is bad. It's just it doesn't
work for me and I think that is the key, is
to find the therapies that work for the people concerned.
I think, yes, tinnitus therapies, some of them help, some
of them don't. If it helps, use it. Why not?
(26:55):
But I would be wary of something that masked a
problem that then stored up a bigger problem later on,
if that makes sense.
Julia van Huyssteen (27:04):
Agreed. And many individuals can't isolate exactly one hearing difference.
It's often more than one thing that is neurodivergent. You
mentioned it before that somebody with autism might also struggle
with misophonia and how do you separate that? It's almost
very tricky to actually do that, so I think we
(27:25):
need to understand these mechanisms a bit better, but we're
having the right conversations at the moment, but you know
what it's like. These things unfortunately take time and tinnitus
is a good example in terms of research. There's so
much around tinnitus available and potential causes and potential therapies,
(27:46):
yet the NICE guidelines, they only endorse a hearing aid
if there's a hearing loss. And CBT, yet you've just talked
about the fact that there's other sound therapies available, for
example, but it's not supported by the National Institute of
Excellence guidelines, because there's not enough evidence to actually all
come together and say, " This works." And that's the issue,
(28:09):
so we've got people-
Professor Andrew Hugill (28:09):
Well, yeah, I agree, but also the problem they have is it's not
generalizable. This is back to aural diversity again. This idea
that there's a one- size- fits- all solution in the
hearing domain seems to be very problematic and hearing is
such a unique thing to each person. And so whatever
(28:31):
we're talking about, there's always going to be an element
of individual adjustment that goes on. And this applies even in the
most common differences. There's always this component of individual adjustment.
And in some senses, audiology does recognize that, because you
can adjust your hearing aids now in a way that
15, 20 years ago, you couldn't. You could maybe turn up
(28:53):
the volume or adjust the treble. That was about it.
But now, you can actually do a lot of personalizing.
So there's obviously a recognition of this, but I think
when it comes to conditions like misophonia, yeah, I think
it's very hard for NICE to issue a set of
standards for something that's so variable and so personal.
Julia van Huyssteen (29:17):
Thought provoking, hey?
Professor Andrew Hugill (29:19):
Yeah.
Julia van Huyssteen (29:20):
So the next question is actually on something that's probably
even more rare or unknown of and probably will be something that
a lot of our listeners will never have heard of
and it's something that you have yourself and that's diplacusis,
which of course, is a hearing disorder whereby a single
auditory stimulus is perceived as different pitches between two ears,
(29:41):
important For musicians, and it's typically experienced usually as a
symptom of sensorineural hearing loss or tinnitus, but not necessarily. I
just want to confirm, I guess, for our listeners that
this is different to a cochlear dead region. So with
a cochlear dead region, which is the area in the cochlea
where there's no function whatsoever, sometimes going back to the
(30:02):
audiogram, you can get a response in different frequencies, but
actually, you can't discriminate between the pitch of those frequencies,
because you have a cochlear dead region. This is different,
because talking about interaural differences.
Professor Andrew Hugill (30:19):
So again, this is another one of these ones that
is classified as rare, but I think it's far more
common than people realize. And I think part of the reason
why people don't realize how common it is is because
most people are not trained musicians, so not used to
listening in that way. If you've got diplacusis and you're
(30:39):
hearing two different pitches from a single pitch source, you
tend to just ignore that and try and work past
it, but if you're a musician, that becomes very debilitating.
So for me, the differences between the two ears vary
in terms of pitch and so the intervallic difference, as
we say in music, anything up to a minor third of
(31:02):
detuning between the two ears, but note by note, it
varies. And I actually built an instrument that reproduces what
I hear when a normal piano is played and I
did this in quite a crude way, which will abuse
audiologists. I blocked up one ear and then played notes
and sang them into a pitch meter and with my
(31:25):
good ear, which is my left ear, my pitch was
pretty well exact. And then when I blocked up my
good ear and did the same exercise with my bad
ear and there was all this detuning in the way that I sang and I
was able then to take those measurements and transfer them
into a digital instrument, which I call the diplacusis piano
(31:46):
and I wrote a set of studies for diplacusis piano
so that people could hear what I would hear if
a normal piano is played. So I think this is a phenomenon
that does apparently affect musicians more than the rest of
the population, but actually, I suspect affects the rest of
the population just as much. And I think certainly with
(32:06):
Ménière's, there are four standard symptoms that you have to
have to be diagnosed with Ménière's. Balance issue, tinnitus, hearing
loss and aural fullness, so it's the sensation of pressure of
fullness in the ear, but actually, diplacusis should be the
fifth one, because I think everybody who has Ménière's also has
(32:27):
diplacusis to some extent. And I did confirm this with
my wonderful consultant, Professor Peter Ray, who very casually said, "
Oh, yeah. Diplacusis is something else that people get with Ménière's."
It's like, " That's the most important thing. Why isn't that part of the diagnostic
criteria?" It's another one of those conditions that I think
(32:48):
needs more research and again, I think we're becoming more
aware of it now, partly thanks to the efforts of
the Aural Diversity network.
Julia van Huyssteen (32:57):
So let's campaign for it being the fifth symptom for
diagnosis for Ménière's. Let's do that.
Professor Andrew Hugill (33:06):
One other thing I should say is people have said
to me, " If that's the problem, why didn't you just
block up one ear and listen with one ear rather
than listening with two ears?" And the weird thing is
that if I do that, I still have the diplacusis.
So you think that this is about the signal hitting
the two ears and one ear being more damaged than the other and so
(33:30):
that is what causes this perceptual difference and that probably is
it, but I think what's going on, and this is
very much amateur theory time, is that my brain has now
understood the differences between the two and so even when
I listen to music without the bad ear, I still
hear the diplacusis.
Julia van Huyssteen (33:51):
Yeah. That's interesting. That's really, really interesting. Oh, wow. So I think the
last complicated one to end on, and a disclaimer here,
I know you've said at the start you're not a
hearing scientist, although, oh my goodness, you know so much
about the topic, credit to you, so the last thing that
I would like to talk about is palinacousis. I think I'm saying
(34:13):
it right. I've only ever read it and that's where
sounds repeat after inaudibility and that's in the simplest form. So I've
got two parts to this question. Is this different to
auditory hallucinations? That's part one. And part two is when I
prepared for this podcast, I stumbled across quite a lot
(34:34):
of different causes of palinacousis, so the majority being physiological,
which I think we can probably tick that box off,
but there was definitely some studies that also mentioned schizophrenia,
so maybe linking in with the first question about auditory
hallucinations. I know that you obviously know a bit on
(34:54):
the topic, but what is your insights and your thoughts
on the links of these and what it is.
Professor Andrew Hugill (34:59):
Yeah. Strictly speaking, it is a form of auditory hallucination
in the sense that you're hearing sounds that aren't there. You're
hallucinating sounds that aren't there. But the difference, as I understand it,
is that in palinacousis, there was a sound and that
it continues after the sound has actually stopped. Whereas in
(35:23):
an auditory hallucination, there is no sound. You just believe
there's a sound. There was nothing that preceded it. So
a typical auditory or musical hallucination would be you think
you hear a record playing and you believe you're hearing
that and there is no record playing. Whereas with palinacousis,
(35:44):
you might have listened to a record and the record's
stopped, but you think it's continued. And I think that's
the major difference, that the brain believes that it's hearing
something continuing in palinacousis. Like you say, this, again, would
be classified as rare. It's something that traditionally, is a result
(36:08):
of lesions in the brain. Also, epilepsy, you get this
phenomenon. As with all the other things, I'm going to
suggest that it's a bit more common than people realize.
I still wouldn't say it's common. I think it is
very unusual, but I think in various kinds of psychological
conditions, it does manifest as part of perhaps a suite
(36:31):
of manifestations of that condition and probably gets overlooked, partly
because it's muddled in with a load of other stuff, but I think it is a little more common than perhaps people realize.
Julia van Huyssteen (36:38):
Yeah. I think, again, this refers back to the standard
protocol that most GPs or ENTs or audiologists would follow.
It's just not something that you would ask about specifically.
It's just not part of the case history and like you say,
actually, if we do, we might start to understand just
(37:02):
how often this happens. And as you say, part of a complex
amount of symptoms that manifest together. But yeah, I've not
come across this personally in my career, but that's because
I've never asked.
Professor Andrew Hugill (37:14):
Yeah. I think for an audiologist, it's something you might
have in the back of your mind and you may
never ever encounter it, but on the day that you
do encounter it, you need to be aware of it and
you need to know what that is. And as you
say, ask people, because often, if you ask people what
their experiences is, you'll be surprised by the answers, because
(37:38):
people will have these very unique experiences. If you look
back, people like Oliver Sacks writing about amusia and these
conditions that at one time were regarded as really unusual psychological
phenomena. And then gradually, over time, as awareness grows, they
(37:59):
start to become a little more prevalent than they were
previously. They're still unusual. A genuine amusia is unusual, but
it's probably more prominent than we previously thought.
Julia van Huyssteen (38:14):
Mm- hmm. That's tone- deaf, right?
Professor Andrew Hugill (38:15):
Yeah. Well, the colloquial thing is tone- deaf. Yeah. The
inability to distinguish, for example, between high and low sounds.
Again, that's a neurological, brain processing thing.
Julia van Huyssteen (38:29):
I wanted to probe a little bit about whether there's
any treatment for palinacousis. And this is my word now,
palinacousis. I've got to try and learn to say it properly, because
obviously, if we identify it, if we ask about it,
we identify that that's something that we need to think
about within our clinics, then where do we go from
(38:49):
there? What is-
Professor Andrew Hugill (38:50):
Well, I'm not aware of any specific treatment for palinacousis, but
I'm hardly an expert on this, but I would imagine
that it would form part of some general treatment for
schizophrenia or for other psychological conditions. It's possible that it
(39:10):
would be incorporated into other forms of treatment that are
not aimed specifically at that condition, because those other aspects
of the condition are not aural necessarily. They don't make
their way into aural diversity, so palinacousis here is sort
of sitting out of context. It should really be seen
(39:31):
in terms of certain forms of mental issues and probably
would make its way into the DSM under that banner,
rather than under any particular aural banner. But for aural
diversity, given what we're trying to show, it's important to
include it, because I'm trying to show the range of
hearing difference.
Julia van Huyssteen (39:52):
Exactly. Exactly. Exactly. And I think that's a really strong
point for us to bring it all together. I am
so thankful, again for you, Professor Hugill, for talking about
aural diversity as passionately as you have been. It was
perfect and it really got the message across. Today, we
(40:19):
delved a little deeper into some of the complex hearing
disorders that can influence our hearing experiences like tinnitus, auditory
processing disorder, misophonia, diplacusis, et cetera and one of the main
takeaways for me is that any industry associated with hearing
in any way have a responsibility to raise awareness on
(40:40):
neurodiversions and aural diversions for how they approach individuals with
communication, music and environmental sounds. It is certainly clear that
our hearing system is complex and that we need to have a patient-
centered care approach that considers any of these hearing differences
in order to give the most appropriate support. If you
(41:01):
are interested in any further information on Aural Diversity, you
can connect with the Aural Diversity family on their website, auraldiversity.
org. If you found any of what you've heard today
helpful, please tell your friends, family and colleagues, so as
many people as possible can share the knowledge. And if
there's a topic you think we should be covering, drop
us an email to the address on the show page.
(41:23):
If you are just discovering this series, we've already talked
to legendary audiologist, Dr. Gus Mueller about hearing aid fitting
standards. And for series two, we had four UK industry
experts that talked about audiology- led wax removal here in
the UK. We also had Dr. Barbara Weinstein talking about
the audiologist's role in dementia. You can go back and
(41:44):
download those previous episodes for free wherever you get your
podcasts from and remember to follow, so you don't miss
any future episodes. This is a Fresh Air Production by
Oli Seymour for Signia UK and Ireland. Until next time, goodbye
and thank you.
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