July 5, 2024 • 38 mins
The whirr of an air conditioner; the feeling of socks on your feet; the sound of other people breathing: Sensory challenges are arbitrary, but they can cause acute distress. In this episode, host Sonia Gray talks to three guests who experience the world in BOLD
And Sensory Integration Specialist, Elen Nathan, unpacks what’s happening in the eight sensory systems, and how we can best support those who have sensory sensitivities. She also explains why chicken nuggets are the one food most kids can eat.
GUESTS:
- Elen Nathan, Occupational Therapist, The Playful Place
- Amber-Rose
- Nikolas
- Bec
- Annabelle
See omnystudio.com/listener for privacy information.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:04):
The fire alarm system has operated stand by for further instruction. Hi,
do you need to make me off?
Speaker 2 (00:13):
Yeah? Just wait.
Speaker 3 (00:17):
A fire alarm is disruptive for anyone, but twenty two
year old amber Rose finds the experience overwhelming.
Speaker 4 (00:24):
It was too loud and to bright, and it was
hor ndous.
Speaker 3 (00:28):
Yes, amber Rose has multiple sensory challenges. Touch, smells, noise,
light are all really hard. So a fire alarm in
my hotel just before our interview was pretty much the
worst thing that could happen. I'm so sorry. Come on
and we'll get you inside. Gelder, I'm Sonia Gray, and
(00:55):
this is no such thing as normal. We're exploring the
complex world of neurodiversity, adhd, autism, dyslexia, dyspraxia, what do
they even mean? In this series you'll hear from experts
and from many wonderful people who experienced the world in
a unique way. We're looking at neurodiversity from the inside.
(01:25):
In this episode, we're exploring sensory sensitivities. Why do some
people find taste, texture, sound, and light so difficult to
cope with? And are these challenges even real? Can you
tell me what that experience is like for you what
(01:47):
it actually feels like having that noise and the lights
in the chaos.
Speaker 4 (01:54):
It would be hard for me to explain, but I
think the best way could articulate it is like smothering.
Everything happens all at once, and for most people they
can just filter out what it is and isn't important.
But for me, I can't really filter it out. So
I hear everything, I see everything. It's quite difficult for
(02:18):
me to handle that because that's a lot of information
for you to process, which is why you're not really
meant to. That's why most people's brains filter it out.
Speaker 1 (02:29):
So I'm based.
Speaker 3 (02:30):
It's not easy to watch someone in such distress, but
amber Rose is determined to carry on with the interview.
I ask about how unique and beautifully complex neurological profile.
Speaker 4 (02:49):
So I have been diagnosed with autism, spectrum disorder, dyslexia, dyspoxia,
and seated disorder.
Speaker 1 (03:00):
To write like epilepsia.
Speaker 3 (03:01):
Yes, amber Rose is way more than just these diagnoses.
She studied psychology and sociology at ic UNI and now
she's part of the gov Tech Talent Graduate Program. She
is incredibly smart, but the flip side is she feels
the world with an intensity that most of us can't imagine.
(03:22):
That fire alarm. It was brutal.
Speaker 4 (03:27):
That was not a good start to this, for sure,
But at the same time, I guess it is symptomatic
of my everyday life. It's I guess it's not that
distinct from what happens to me every day. I mean,
it was definitely more intense than it tomally is, but
it's exactly the same century processing problems I have on
(03:51):
a daily basis, all day, every day.
Speaker 3 (03:59):
Part of what makes the average day had for Amburrows
is public transport, the noise, the flashing lights, the proximity
to people.
Speaker 4 (04:08):
I mean, my train during these only twelve minutes, but
it feels like an eternity sometimes, and I think the
difficulty there is no one's seeing that the building I
work in has a really loud air conditioner and I
got them to turn the lights off over my desk,
(04:30):
but all the other lights are still on. Then sort
of have a day of blocking out air conditioning but
also trying to still pay attention to everything else, which
is a juggling act I'm not very good at.
Speaker 3 (04:46):
Yeah, it's you know, what I'm thinking now is how
do you get through a day.
Speaker 1 (04:57):
How do I do.
Speaker 4 (05:03):
It's just one step at a time. I suppose just
one step at a time, trying to take a dig, breath,
do something. No, it's going to be hard. Now you're
going to be upset that, you're going to get incredibly distressed,
but you also just have to do it. Obviously, people
(05:23):
aren't seeing that, not really comprehending the actual issue, the
difficulty behind that, and being fundamentally incapable of articulating to
people what the issue is. Which is why I'm stressed
about talking to you, is I know that I don't
have the words to explain, because I don't think anyone
(05:46):
would have the words to explain such a complicated matter
if they hadn't experienced it.
Speaker 3 (05:53):
Not many of us do experience sensitivity to this degree,
but we can all relate. If you think about things
like fingernails down a chalkboard or the sound of a
power drill. That is sensory overload for most people, but
we can avoid these for the most part. For people
that gain a rows, the triggers are everywhere, and her
challenges extend to food.
Speaker 4 (06:15):
I would describe my poet as that of a very
fusty seven year old I don't like foods touching geechebat,
I don't like strong flavors. I don't like very contrasting flavors.
So what I mostly eat is pasta and chicken nuggets
and sweet corn, but sometimes chips, sometimes other things, but
mostly very homogeneous foods. And I think that's one of
(06:39):
the keys to understanding what I like is the uniform
nature of it. So if you eat a chicken nugget,
it pretty much tastes the exact same every single time,
whereas some things you eat and it's quite unpredictable. So,
for instance, strawberries, you might buys to strawbery might be
(07:00):
quite firm, it might be quite squishy, it might be watery,
you don't really know. If you eat a chicken nugget,
it just always tastes like chicken nugget. So even though
I can say objectively that chicken nuggets are the nicest
tasting food in the world, they are always the exact same.
Speaker 1 (07:18):
Yes, that makes so much sense.
Speaker 3 (07:21):
I like strawberries too, Yes, And I've never really thought
about the fact that a lot of the time, probably
more than half the time, when I eat a strawberry,
it's disappointing. Yes, but then if I take that experience
and go but for amburrows, it's multiplied. Yes, it does
make sense. Yes, let's talk about chicken nuggets. Even when
(07:50):
there's very little ells they can eat. Most could seem
to tolerate the nugget. Sure, you know what you're gonna
get with the chicken nugget. But there are lots of
predictable foods. And Nathan is an occupational therapist who specializes
in the sensory system, and I ask her, what's the
deal with chicken nuggets?
Speaker 1 (08:09):
So when we think about a chicken nugget, it's already
been pre chewed by the machine that makes it. So
this whole piece of meat has been kind of minced
down a little bit, buy a machine, and then put
back together in some way. So for some people, having
that pre chewed piece done makes it actually easier for
(08:30):
them to then chew and swallow. When we're eating say,
different chicken, we might have roast chicken, we might have
chicken breast, we might have chicken thigh, we might have
chicken tenders. All of those chickens come with different types
of texture and different sizes and different shapes, and so
that's all different information. That our mouth needs to be
(08:53):
figuring out when is the point to swallow, and so
for some people that's just really hard.
Speaker 3 (09:00):
Most of us chew and swallow without thinking. But Allen says,
the active eating is actually really complex. There's a whole
lot going on, and certain foods are particularly problematic, like
the ones we're desperate to get into our kids. Fruit
and vegetables, they are so incredibly unpredictable. Vegetables are a
little bit better actually than fruit.
Speaker 1 (09:22):
But you know, you might get a punnet of blueberries,
and every blueberry is slightly different, you know, the different shapes,
the different sizes. Whereas you buy a packet of biscuits
and every single one looks very similar. You know, you've
got that row of chocolate fingers, like every mouthful is
the same. So if you take that back to a
single mouthful of say a blueberry, and it pops in
(09:44):
and you're a super taster, and you get a million
different data points around that blueberry because it's new and
it's different, And then you have the second blueberry it's
a little bit more squishy. So now you've got all
this other information that you're processing versus your chop finger
that every time you bite it, it's the same.
Speaker 3 (10:04):
I know what it sounds like, clever kids just holding
out for sugar and junk food. In reality, it's about
which foods feel safe and which foods really don't. So
there will be people listening ellen that are thinking to themselves,
any kid will eat anything, they're hungry. Just don't feed
(10:28):
them anything else and they'll eat. What would you say
to that, the person that says, picky eaters just need
to be left to get hungry.
Speaker 1 (10:36):
Yeah, I think pegging my words carefully. I think that
one of the things I often reflect on when I'm
working with these kids is yeah, I can offer them
caramelo chocolate, I can offer them McDonald's and they'll still
say no. They're avoiding the vegetables because they are so
incredibly unpredictable.
Speaker 3 (10:58):
Amber Ross food seendivities have followed her into adulthood, and
the anxiety around fruit and veggies is too much. But
she does eat sweetcorn. It's one of her three staple foods. Yes,
it's a vegetable, but it's also predictable.
Speaker 4 (11:16):
It's like if you buy a ten of the exact
same brand of sweet corn, it probably tastes exactly the
same every time. But if you go out and buy
the same brand of apple, then it's not necessarily going
to be the same every time. In fact, even you
got an apple from the exact same tree at the
same time, it wouldn't taste the same. So I think
(11:39):
the fruits and vegetables is definitely an issue there. Sometimes
there's the sexua, sometimes it's just kind of an unusual flavor,
and sometimes there's the impresictibility. Normally it's all three combined.
Speaker 3 (11:54):
Yeah, it's like, we want to go what is it?
Is it the smell? Is it the texture? And that
must be so frustrating for you because people will serve
something up that they think you'll leat because they'll be like, oh,
we got something like chicken nuggets, yes, and it's like, no,
it's not just the texture yeah, or the flavor.
Speaker 1 (12:14):
Yes.
Speaker 3 (12:16):
My Daughterynes also had an issue with fruit and veggies.
When she was seven, she lived on a diet of
ham and cheese, pizza, and chocolate fingers. I know some
of you will be rolling your eyes thinking, we just
ate what was put in front of us in my day,
and I get it. It's very hard to understand if
you haven't lived it. I felt like an absolute failure
(12:37):
as a parent. But it was really obvious this wasn't
a choice for ynes.
Speaker 1 (12:43):
Yeah, and it wasn't a choice for either of you.
It's not a choice for you as a parent necessarily
to feed your child pizza every day. It's what your
child needs right now, just like it's not a choice
for her to eat pizza every day. It's what her
body needs right now, and it's what her sensory system
is telling her is safe, and so in order for
her to get some sense of safety in her day,
(13:04):
that's the way that that's happening for her.
Speaker 3 (13:08):
But of course we were so worried. The number one
advice we're given as parents is give good food, and
my daughter was surviving on a diet of crap. Where
is that cut off point? Like, if a child is
eating say three foods, and all the blood tests are fine,
(13:29):
their energy levels seem fine, you know, there'll be parents
that are listening that are like still petrified because they're
not maybe getting all the different food groups that we're
told to get. What point do you go, right, I've
got to get some help.
Speaker 1 (13:46):
Yeah, I think that's a really good question. So I
think if your child is eating less than ten foods.
You definitely want to go and see a health professional
and just have a checkup.
Speaker 3 (13:57):
When your child won't eat it is terrifying, and society
looks directly at the parents. But what if this extra
sensitivity is there for a reason.
Speaker 1 (14:08):
Twenty five of the scent of our population are considered
super tasters, and it's a really big stamp until you go, well,
hang on, think about all the people who are chefs,
and all the people that create wine, and all the
people that are doing gin distilleries. And you've got to
know flavor incredibly well, like, well beyond what I understand
flavor to be able to pull that off. So there's
(14:30):
spaces where these sensitivities are celebrated.
Speaker 3 (14:34):
So that's kind of slipping it on its head, isn't it.
It's going sure, I can look and other parents can
look at food as being problematic for our children, or
we can go actually, they can taste details we're oblivious to.
Speaker 1 (14:50):
Yeah.
Speaker 3 (14:51):
Absolutely, of course, sensory challenges go way beyond food. Like
so many kids in is really struggled with texture and
the feeling of clothes. I wish I'd known then that
this all of this is about what feels safe with
my daughter. Multiple challenges, multiple wonderful skills, but the one
(15:15):
that had the biggest limitation on her life was clothes.
Restriction in the clothes she could wear, and restriction in
the food she could eat. And here's a kid who's
so skinny wearing one dress every day through winter and summer.
It's so stressful. Of course it's stressful for them as well.
(15:38):
And now, looking back, I think, you know, I didn't
really understand that my stress around the situation was potentially
feeding into it. Excuse the pat I don't even know
what the question is here.
Speaker 1 (15:52):
I think what you just kind of showed us how
complex it is. You know, you had this child and
you wanted to clothe and feed her the kind of
basic needs, and you were failing as a parent because
you couldn't do those things. Well, I would reframe that
a little bit and say you were succeeding as a
parent because you were giving her the space to wear
one dress for a year. So to me, that is
successful parenting of neurodivergent person who's saying I don't want
(16:16):
to wear different clothes every day, and you've obviously said okay, cool,
if it's one dress this year. It's one dress this year,
so you weren't failing. You may have.
Speaker 3 (16:25):
Didn't roll out quite like that, Ellan, but we accepted
it obviously. No, it wasn't like we forced her into it,
but it was. Yeah, we understood that it wasn't a choice.
It was so confusing. It was such a confusing time.
Confusing is actually an understatement. At the time, I didn't
(16:46):
know any other kids who struggled with the world in
the same way Nazzy did. But then my friend Beck's
little son Nicholas, started having exactly the same sort of challenges.
Speaker 2 (16:59):
Do we have to the laces?
Speaker 1 (17:00):
No, I won't loaf.
Speaker 3 (17:02):
Yes, Nicholas is pretty much always barefoot. He hates shoes
and socks. But I've asked him to put a pair
of shoes on so that you, the audience can hear
just how cute the experience is for him. Does it
make you feel anxious when you know you've got a
shoe about to go on?
Speaker 2 (17:22):
Yep?
Speaker 1 (17:23):
Have I done it wrong?
Speaker 5 (17:25):
No?
Speaker 2 (17:25):
I just don't like socks or shoes.
Speaker 3 (17:30):
What a meaning I am? A yeah?
Speaker 1 (17:33):
Okay, you really?
Speaker 3 (17:36):
Eh, just quickly tell me how it feels.
Speaker 2 (17:43):
It feels horrible. They feel like my foot's stuck in
an itchy snail garden.
Speaker 3 (17:52):
I love it, and that she snaill garden. Well, I
don't love it. That sounds terrible. You just tell mammy
if you want to take it off. Suddenly realize this
is like child abuse.
Speaker 2 (18:02):
Okay, take it off. Can you take it off? She's right,
it is child abuse.
Speaker 3 (18:09):
I can take it off.
Speaker 1 (18:10):
Yeah, oh my god, don't report me.
Speaker 3 (18:12):
We can laugh. But this is the worst thing for Nicholas.
His tactile system is super sensitive, and Allan Nathan says
skin sensitivity is extremely tough to live with.
Speaker 1 (18:24):
You can't feel safe in your own body when your
skin feels like it's on fire, when it feels like
it's crawling all the time, or you can feel every
last piece of cloth on your body that is so hard.
You can't turn your tactile system off. If something is
too loud, you can cover your ears, if something is
too bright, you can put on sunglasses. But if your
(18:46):
skin is sensitive, you can't turn it off, and you
can't dampen it down. It goes with you everywhere.
Speaker 3 (18:53):
Nicholas is first school didn't understand how severe the experience
is for him. What was hard about the uniform.
Speaker 2 (19:01):
It was kind of itchy and scratchy. That's kind of annoying.
Perse my toes have to stay like this the entire
time kind of.
Speaker 3 (19:13):
And does it get to the point sometimes where you're
like all you can think about is that your toes
are like that?
Speaker 2 (19:19):
Yeah?
Speaker 3 (19:21):
And was the school uniform part of the reason that
you left that school? Yeah, beg Nicholas's mum jumps in
to explain.
Speaker 5 (19:31):
So the school was quite rigid with their school uniform,
and Nicholas couldn't wear the summer sandals. In the winter
they had to wear black leather shoes. Well, he just couldn't.
It was just too much when we tried, but it
just didn't work. So we got black shoes, but they
had white celes and they wouldn't allow that. So I
(19:53):
tried coloring them in, but it just wasn't okay. And
when I spoke to the school about it, I said,
he actually can't, and they said, well, we can't let
him do it because otherwise everyone else will be allowed
to do it. And the thing that upset me most
was they would give him a hard time about it.
(20:13):
And he was only five, and we bought so many
shoes didn't wear. How many shoes do we buy? Like
fifty yeah, like forfty pairs of shoes and we finally
found a pair, but they had white soles.
Speaker 3 (20:28):
It's not just about feet, our skin and touch receptors
are all over our body.
Speaker 1 (20:34):
It's hard. The tactile sense is one of the senses
that when it is hyper sensitive, we need to be
really gentle and understanding with people that this is incredibly
hard because you can't turn it off and you can't
get away from it.
Speaker 3 (20:49):
And Alan has a message for school policy makers.
Speaker 1 (20:53):
If you have a role in your school that says
that you must wear shoes and socks all day, why
sensory concerns are often invisible. You know what's happening inside
the nervous system, we can't see that, But what we
can see is how this person is behaving or coping. So,
if you're holding space for your genius inventors of the future,
(21:17):
if you're holding space for all kids, and if you're
running an inclusion policy, saying that there's a role that
you must wear this pair of shoes and this type
of sock is not inclusion.
Speaker 3 (21:31):
Misunderstanding of what's really going on can cause so much suffering.
But if we look at sensory differences as a whole,
I still don't really understand where they fit in the
neurodiversity paradigm. It really depends who you talk to. It's unique,
it's complicated, and the guidelines are constantly changing. One thing
(21:52):
we do know is these challenges seem to pretty much
always show up as part of an autism diagnosis.
Speaker 1 (21:58):
And I have never met in tested person that doesn't
have sensory differences compared to neurotypical.
Speaker 3 (22:04):
I guess the question is, can there sensory challenges exist
outside and autos and diagnosis.
Speaker 1 (22:09):
One, Yes, so you can have just a sensory processing difference,
and then sensory comes into lots of other conditions as well,
So there's often a sensory component to ADHD. For example,
there's often sensory differences when there's being trauma. There's often
(22:30):
sensory differences during period metopause, like, there's lots of times
when we might have sensory differences.
Speaker 3 (22:36):
Could you have sensory differences just because you have sensory differences?
Speaker 1 (22:40):
Yes, absolutely, you can just be born with a hypersensitive
tactile system and nothing else.
Speaker 3 (22:45):
Allen says we shouldn't get too hung up on diagnoses,
they are imprecise at best. Her focus is on gently
reducing anxiety and helping her young clients get to a
point where there are least restrictions on their lives. Is
to help them do whatever is important to them and
to their far no but it's not always easy, especially
(23:06):
when your challenges are the innocent noises of other people.
Speaker 6 (23:11):
In silent areas. I think that's when it becomes much worse,
because it's like it feels like they're yelling.
Speaker 3 (23:21):
Annabelle is a nineteen year old Wellington UNI student. She
has many sensory sensitivities. Food and smells are intense for her,
but the things she finds hardest are noises, and often
it's the innocent noises of other people. She tells me
what had really thrown her the day before this interview
(23:42):
a guy eating a pie.
Speaker 6 (23:47):
And he wasn't eating it obnoxiously, he wasn't doing anything
that was like deliberately stupid. But all I could hear
was this little smack like this, and the smacking of
the lips or that. I don't really know how to articulate,
but it almost hurt, like it hurt, like it's grating,
and it makes me want to go up and like
yell at the person. But I know that they're not
(24:08):
doing it spitefully and that would be stupid. But in
my head, like I cannot focus on anything else. And
like in lectures, for example, whispering, any sort of whispering,
I just it's just normal people things. For most people,
they wouldn't focus on it, But for me, my brain
just zooms in on a particular sound and that's all
(24:29):
I can hear. Internally, it's like I'm yelling and little
things like there was a person sitting behind me in
a lecture the other day. I could hear breathing.
Speaker 3 (24:41):
And while I don't consider myself a problematic breather or
whisperer or lipsmacker, it turns out to Annabelle, I am.
Speaker 6 (24:50):
There was a person behind me who keeps smacking their
lips the entire like that what you just did? I
just heard that?
Speaker 1 (25:00):
Do something?
Speaker 2 (25:00):
Well?
Speaker 6 (25:00):
See, no, but like I can hear it, like there's
just a little like.
Speaker 3 (25:04):
Can you hear me doing that?
Speaker 1 (25:09):
Yes? Right, I was just testing you to see.
Speaker 6 (25:12):
But that's so that's normal, you know, it's normal human actip.
That's what makes it. It's not I should not be
able to tell people that they can't, I don't know,
breathe because it always.
Speaker 1 (25:20):
You know, yeah, stop breathing. As really irritated because.
Speaker 6 (25:22):
It's just normal human activity and stuff. But because I
have a lovely little brain, it's just a lot harder
to navigate.
Speaker 3 (25:31):
Okay, so we'll there be situations where that same person
could be breathing, but because your day has kind of
been really cruisy and nothing else said and you wouldn't
even notice it.
Speaker 6 (25:41):
I think, so, yeah, it gets way worse when I've
had it. If something's already kind of racked me up,
then suddenly everything becomes ten times worse. Often, if I've had,
you know, like I've had a really cruizy day and
something someone's doing the same breathing thing, I might I
would hear it, but I think I would. Often i'd
(26:02):
been more.
Speaker 3 (26:03):
You'd be able to do what most of us can do,
which is just go, oh that's annoying, but I'll go
back to what I'm doing.
Speaker 6 (26:08):
Yeah, Well, to an extent, I don't feel as angry.
Speaker 3 (26:13):
How do you get through life? Because there are so
many instances like that that you can't avoid it.
Speaker 6 (26:21):
I just have to deal with it because I can't
make people stop breathing or I can't make you know
it sounds go away. So often by the end of
the day, I'm just I just need to like lie down.
Speaker 3 (26:34):
It's a lot to deal with. And sure, Annabelle and
Amburrows do have extreme sensitivities, but Allen Nathan says she
has many clients like this. It's not uncommon.
Speaker 1 (26:46):
Some of them can hear electricity in the wall. I
work with a girl who can hear the tiy three
gardens away from my house. So you imagine that your
average hearing, Like you're sitting having a conversation with somebody
in a cafe at the beach, over zoom, wherever it is.
You're not just listening in this little bubble that of
what you can see, you're listening three or four gardens away.
(27:10):
You can hear three or four gardens away. That's a
lot more sensory information you're taking in than the person
next to you, if they are neurotypical or don't have
that sensitivity. And then you times that by eight. Let's
say that you're sensitive in hearing and in touch and
in vision, and what my body is telling me. You know,
all these things. It's just so much information that if
(27:32):
you can control something like food, then you're going to
control food because actually you've just got to make life
simpler somewhere. And if you don't get to make the
choice about the clothesy where you have to go to
school in this uniform, well then sure I'll go to
school in this uniform, but I'm not able to eat
lunch as well. It's one or the other.
Speaker 3 (28:01):
Annabelle can't control the Pietas and lip smackers of the world,
and she really doesn't want to. But there are things
she can control, things that give her a sense of safety.
When those are disrupted, the response can be extreme. She
gives me an example a trip home from UNI recently
(28:23):
that led to a standoff with her younger sister.
Speaker 6 (28:27):
My sister was sitting in my chair at the dinner
table and I said, Samantha, that's my chair, Please can
you hop out of it? And she was laughing about it,
and I said, Samantha, I please get out of my chair.
And I couldn't. I can't explain what it actually was
that was so like triggering about that, but I just
completely lost the plot. She's just like, what, I don't
(28:49):
understand why it's.
Speaker 1 (28:51):
Why should you always give your way? And also what say?
Speaker 2 (28:53):
Yeah?
Speaker 6 (28:53):
And it's also like it's a seat, it's not a
big deal. And I'm like, I'm trying to articulate before
I have a meltdown, like I'm doing it to stop
the meltdown, and so right right, L and that didn't
you know anyway, So that's your time.
Speaker 3 (29:06):
I'm like basically almost trying to protect them, because you
can't be in control of what your body does when
there's change like that.
Speaker 1 (29:14):
Yeah, in that instance.
Speaker 3 (29:15):
So it's not that you're going I want to have
my way and I'm your sister. You're just going, honestly,
like this change is so messive for me.
Speaker 6 (29:23):
Yeah, it doesn't seem that way to you. And it's
just it's a cheer, like there's four other chairs, please,
like I wouldn't be this. But it's really hard for
people who don't think like that to actually even empathize
with that because they're just so irrational. And I can
see how it seems so irrational.
Speaker 3 (29:42):
And can you explain what it is about the seat
because it's not about the seat, I know, but about
the change. There will be other changes. The dinner itself
will be different. What is it about sitting in the
same place.
Speaker 6 (30:01):
It's the seat doesn't change. And in my head, that
is one regularity or one thing that like a constant. Yeah,
are constant, and I need that constant to regulate myself,
because yes, dinner's change and mood changes and everything like that.
But that seat and where I sit and how I
you know that space. I'm used to that. I'm comfortable
(30:24):
in that space.
Speaker 3 (30:26):
But from her, as a sixteen year old, she's going,
can you didn't even?
Speaker 1 (30:31):
You don't even?
Speaker 3 (30:32):
Yeah, so it's hard.
Speaker 1 (30:33):
It's hard.
Speaker 6 (30:34):
Yeah, and I know that it's hard for you know
people they just go, you're you're perhaving like a child,
and yeah, from the outside it kind of does look
like that.
Speaker 3 (30:43):
No, but you know what you've said, I'm not trying
to be difficult. I'm trying to create a situation where
I don't have a meltdown because I don't have that control.
And that's so interesting and it helps me and I
think help with a lot of parents people in general
just go, Okay, this is not You're not making this
about you. You're trying to almost protect Yeah, our happy dinner.
Speaker 6 (31:06):
That's the hard thing is you know, with my brain,
I will be saying a lot of eye statements and
how I feel like this and this and this. And
it's not because I am trying to only talk about
myself and everything's about me, But it's because I'm trying
to put in preventive measures so that everything stays happy.
Speaker 3 (31:27):
It must be so exhausting. Those like Annabelle are not
only managing a sensory onslaught, They're also dealing with a
society that is pretty unsympathetic. We have a super low
tolerance for people who need things to be a certain way.
My daughter's sensory challenges have eased so much in the
last few years. Other parents report the same. Is part
(31:50):
of that just getting older, we.
Speaker 1 (31:53):
Mature, things change, we can get used to certain things.
That's always going to be multi factors, right, There's just
going to be so much going on. So part of
it is the older we get, the more autonomy we have,
the more choice we get, the more autonomy we have
over our body. I don't like the smell, I'm going
to walk away, whereas a two year old or three
(32:15):
year old to four year old, they can't necessarily walk away,
or they can't put all that together yet I don't
like the smell, therefore I'm going to walk away. That's
actually quite an organized response to something that's stressful. And
as we get older and we practice that more and
more and we get better at it, it might just
be that where we have more control over ourselves and
(32:35):
our environment, there's not so many stresses anymore, or we
can act in a little bit more of a response
way rather than a reactionary way. We do know that
it does come through in the research and the evidence
that as people get older that their sensitivities do seem
to reduce. That the hyper sensitivities that we see a
(32:57):
lot in childhood in those teen age years are disappearing,
not completely. It's still there, but it's not as severe
or as difficult. It doesn't have such an effect on
life as it might do when you're younger.
Speaker 3 (33:13):
So things might ease up with age, but when you're
in the thick of it, it is hard as a
parent to stop from completely freaking out. It's very easy
as a parent to go, oh my god, my child
is the only one in the world going through this.
Speaker 1 (33:28):
So these difficulties are not uncommon. That's not uncommon at all.
What you need to know is your child doesn't feel
safe right now, and your role is to support them
to feel safe, and so the quickest, simplest way is
acceptance and empathy.
Speaker 3 (33:44):
Acceptance and empathy and knowing you're not alone, those can
be game changes. Twenty two year old Amberrows would love
the world to be more empathetic, but it takes an
understanding of how big this really is.
Speaker 4 (33:57):
Sometimes people will see, say, processing issues as just sort
of this arbitrary thing that just affects you when you
want to go to a concert or want to go
to a busy pub, but it has profound impacts. Every
aspect of your life is influenced by the way that
(34:19):
the world is fundamentally not designed for you. To succeed,
and to actually succeed takes an awful lot of effort
and an awful lot of perseverance.
Speaker 3 (34:33):
Perseverance and something both Amberrose and nineteen year old Annabelle
need to call on every single day. You'll hear more
from them in future episodes. I was blown away by
their courage and their incredible insight. Ellen Nathan says it's
proof that these so called challenges can end up being
great strengths.
Speaker 1 (34:54):
I think that a key factor for that working is
also have they had an experience in those younger years
where somebody has empathized with them and understood that, gosh,
this is big for you, this is uncomfortable for you.
How can I help? That's what we're trying to support them,
that this is big, and we acknowledge that there's no
(35:15):
get over it. It's not that bad. I can't smell it.
You know. Those sorts of responses aren't helpful. The responses
we need are acknowledgment and acceptance of how this child
is showing up in this moment, empathy for what they
might be experiencing, even if we don't fully understand it,
and then holding space to create safety around that experience,
(35:36):
like this is scary for you, but you're safe with me.
And then an element of Okay, what can we do
about it? Let's walk away from that smell, or let's
not bring that food into our house again, or I'm sorry,
I'm wearing that perfume. I won't do that again, So
that we create a little sense of control around what
just happened, and then over time we learn that these
things can be controlled in some way. It can be
(35:58):
controlled in a way that's not so scary. Inn Whereas
if we've had a really long period of time where
we've got these sensitivities and no one's really acknowledging them
and no one's really helping us, then those sensitivities may
not disappear because we're still actually in flight flight fright
when we're responding to those sensitivities.
Speaker 3 (36:19):
Amber Rose is passionate about helping the vulnerable. It's what
gives her the drive to push through the many obstacles
she faces daily. She was president of the Disabled Students
Association at vic UNI, and this role honed her diplomatic skills.
So I ask you, what's the neck to advocacy and diplomacy?
Speaker 4 (36:41):
So you have to be calm and patient and try
and be articulate with what you're saying when people are
diminishing your humanity, which is quite difficult. It's us meeting
in the middle. It's I'm coming to you, you're coming
to me, meeting in the middle.
Speaker 1 (37:01):
How old are you ever?
Speaker 4 (37:02):
A Rose ain't twenty two.
Speaker 3 (37:04):
There are very few twenty two year olds who have
reached that level of emotional understanding that those sort of
skills are things that people get to eighty two and
don't have. So I think you have so much to
offer the world. I think you have a message for
the world. Thank you, Thank you so much. Next week
(37:27):
on No Such Thing as Normal Anigamore on ADHD.
Speaker 1 (37:32):
As you go through all this turmoil, what Ami, Why
am I this way? Why am I failing in life?
Speaker 4 (37:39):
Where in fact you're not failing in life.
Speaker 1 (37:41):
You're amazing and you do amazing things, but you be
something missing and that's your a diagnosis.
Speaker 3 (37:47):
If you like this podcast, please rate and review it.
It helps people find it. No Such Thing as Normal
as produced and presented by me Sonia Gray. Nathan King
is the editor. Owen O'Connor and Mitchell Hawks are executive producers.
Production assistant is Beck's War. The series is brought to
you by the New Zealand Herald and Team Uniform and
(38:08):
it's made with the support of New Zealand on Air.
New episodes of No Such Thing As Normal are available
every Saturday wherever you get your podcasts.
The fire alarm system has operated stand by for further instruction. Hi,
do you need to make me off?
Speaker 2 (00:13):
Yeah? Just wait.
Speaker 3 (00:17):
A fire alarm is disruptive for anyone, but twenty two
year old amber Rose finds the experience overwhelming.
Speaker 4 (00:24):
It was too loud and to bright, and it was
hor ndous.
Speaker 3 (00:28):
Yes, amber Rose has multiple sensory challenges. Touch, smells, noise,
light are all really hard. So a fire alarm in
my hotel just before our interview was pretty much the
worst thing that could happen. I'm so sorry. Come on
and we'll get you inside. Gelder, I'm Sonia Gray, and
(00:55):
this is no such thing as normal. We're exploring the
complex world of neurodiversity, adhd, autism, dyslexia, dyspraxia, what do
they even mean? In this series you'll hear from experts
and from many wonderful people who experienced the world in
a unique way. We're looking at neurodiversity from the inside.
(01:25):
In this episode, we're exploring sensory sensitivities. Why do some
people find taste, texture, sound, and light so difficult to
cope with? And are these challenges even real? Can you
tell me what that experience is like for you what
(01:47):
it actually feels like having that noise and the lights
in the chaos.
Speaker 4 (01:54):
It would be hard for me to explain, but I
think the best way could articulate it is like smothering.
Everything happens all at once, and for most people they
can just filter out what it is and isn't important.
But for me, I can't really filter it out. So
I hear everything, I see everything. It's quite difficult for
(02:18):
me to handle that because that's a lot of information
for you to process, which is why you're not really
meant to. That's why most people's brains filter it out.
Speaker 1 (02:29):
So I'm based.
Speaker 3 (02:30):
It's not easy to watch someone in such distress, but
amber Rose is determined to carry on with the interview.
I ask about how unique and beautifully complex neurological profile.
Speaker 4 (02:49):
So I have been diagnosed with autism, spectrum disorder, dyslexia, dyspoxia,
and seated disorder.
Speaker 1 (03:00):
To write like epilepsia.
Speaker 3 (03:01):
Yes, amber Rose is way more than just these diagnoses.
She studied psychology and sociology at ic UNI and now
she's part of the gov Tech Talent Graduate Program. She
is incredibly smart, but the flip side is she feels
the world with an intensity that most of us can't imagine.
(03:22):
That fire alarm. It was brutal.
Speaker 4 (03:27):
That was not a good start to this, for sure,
But at the same time, I guess it is symptomatic
of my everyday life. It's I guess it's not that
distinct from what happens to me every day. I mean,
it was definitely more intense than it tomally is, but
it's exactly the same century processing problems I have on
(03:51):
a daily basis, all day, every day.
Speaker 3 (03:59):
Part of what makes the average day had for Amburrows
is public transport, the noise, the flashing lights, the proximity
to people.
Speaker 4 (04:08):
I mean, my train during these only twelve minutes, but
it feels like an eternity sometimes, and I think the
difficulty there is no one's seeing that the building I
work in has a really loud air conditioner and I
got them to turn the lights off over my desk,
(04:30):
but all the other lights are still on. Then sort
of have a day of blocking out air conditioning but
also trying to still pay attention to everything else, which
is a juggling act I'm not very good at.
Speaker 3 (04:46):
Yeah, it's you know, what I'm thinking now is how
do you get through a day.
Speaker 1 (04:57):
How do I do.
Speaker 4 (05:03):
It's just one step at a time. I suppose just
one step at a time, trying to take a dig, breath,
do something. No, it's going to be hard. Now you're
going to be upset that, you're going to get incredibly distressed,
but you also just have to do it. Obviously, people
(05:23):
aren't seeing that, not really comprehending the actual issue, the
difficulty behind that, and being fundamentally incapable of articulating to
people what the issue is. Which is why I'm stressed
about talking to you, is I know that I don't
have the words to explain, because I don't think anyone
(05:46):
would have the words to explain such a complicated matter
if they hadn't experienced it.
Speaker 3 (05:53):
Not many of us do experience sensitivity to this degree,
but we can all relate. If you think about things
like fingernails down a chalkboard or the sound of a
power drill. That is sensory overload for most people, but
we can avoid these for the most part. For people
that gain a rows, the triggers are everywhere, and her
challenges extend to food.
Speaker 4 (06:15):
I would describe my poet as that of a very
fusty seven year old I don't like foods touching geechebat,
I don't like strong flavors. I don't like very contrasting flavors.
So what I mostly eat is pasta and chicken nuggets
and sweet corn, but sometimes chips, sometimes other things, but
mostly very homogeneous foods. And I think that's one of
(06:39):
the keys to understanding what I like is the uniform
nature of it. So if you eat a chicken nugget,
it pretty much tastes the exact same every single time,
whereas some things you eat and it's quite unpredictable. So,
for instance, strawberries, you might buys to strawbery might be
(07:00):
quite firm, it might be quite squishy, it might be watery,
you don't really know. If you eat a chicken nugget,
it just always tastes like chicken nugget. So even though
I can say objectively that chicken nuggets are the nicest
tasting food in the world, they are always the exact same.
Speaker 1 (07:18):
Yes, that makes so much sense.
Speaker 3 (07:21):
I like strawberries too, Yes, And I've never really thought
about the fact that a lot of the time, probably
more than half the time, when I eat a strawberry,
it's disappointing. Yes, but then if I take that experience
and go but for amburrows, it's multiplied. Yes, it does
make sense. Yes, let's talk about chicken nuggets. Even when
(07:50):
there's very little ells they can eat. Most could seem
to tolerate the nugget. Sure, you know what you're gonna
get with the chicken nugget. But there are lots of
predictable foods. And Nathan is an occupational therapist who specializes
in the sensory system, and I ask her, what's the
deal with chicken nuggets?
Speaker 1 (08:09):
So when we think about a chicken nugget, it's already
been pre chewed by the machine that makes it. So
this whole piece of meat has been kind of minced
down a little bit, buy a machine, and then put
back together in some way. So for some people, having
that pre chewed piece done makes it actually easier for
(08:30):
them to then chew and swallow. When we're eating say,
different chicken, we might have roast chicken, we might have
chicken breast, we might have chicken thigh, we might have
chicken tenders. All of those chickens come with different types
of texture and different sizes and different shapes, and so
that's all different information. That our mouth needs to be
(08:53):
figuring out when is the point to swallow, and so
for some people that's just really hard.
Speaker 3 (09:00):
Most of us chew and swallow without thinking. But Allen says,
the active eating is actually really complex. There's a whole
lot going on, and certain foods are particularly problematic, like
the ones we're desperate to get into our kids. Fruit
and vegetables, they are so incredibly unpredictable. Vegetables are a
little bit better actually than fruit.
Speaker 1 (09:22):
But you know, you might get a punnet of blueberries,
and every blueberry is slightly different, you know, the different shapes,
the different sizes. Whereas you buy a packet of biscuits
and every single one looks very similar. You know, you've
got that row of chocolate fingers, like every mouthful is
the same. So if you take that back to a
single mouthful of say a blueberry, and it pops in
(09:44):
and you're a super taster, and you get a million
different data points around that blueberry because it's new and
it's different, And then you have the second blueberry it's
a little bit more squishy. So now you've got all
this other information that you're processing versus your chop finger
that every time you bite it, it's the same.
Speaker 3 (10:04):
I know what it sounds like, clever kids just holding
out for sugar and junk food. In reality, it's about
which foods feel safe and which foods really don't. So
there will be people listening ellen that are thinking to themselves,
any kid will eat anything, they're hungry. Just don't feed
(10:28):
them anything else and they'll eat. What would you say
to that, the person that says, picky eaters just need
to be left to get hungry.
Speaker 1 (10:36):
Yeah, I think pegging my words carefully. I think that
one of the things I often reflect on when I'm
working with these kids is yeah, I can offer them
caramelo chocolate, I can offer them McDonald's and they'll still
say no. They're avoiding the vegetables because they are so
incredibly unpredictable.
Speaker 3 (10:58):
Amber Ross food seendivities have followed her into adulthood, and
the anxiety around fruit and veggies is too much. But
she does eat sweetcorn. It's one of her three staple foods. Yes,
it's a vegetable, but it's also predictable.
Speaker 4 (11:16):
It's like if you buy a ten of the exact
same brand of sweet corn, it probably tastes exactly the
same every time. But if you go out and buy
the same brand of apple, then it's not necessarily going
to be the same every time. In fact, even you
got an apple from the exact same tree at the
same time, it wouldn't taste the same. So I think
(11:39):
the fruits and vegetables is definitely an issue there. Sometimes
there's the sexua, sometimes it's just kind of an unusual flavor,
and sometimes there's the impresictibility. Normally it's all three combined.
Speaker 3 (11:54):
Yeah, it's like, we want to go what is it?
Is it the smell? Is it the texture? And that
must be so frustrating for you because people will serve
something up that they think you'll leat because they'll be like, oh,
we got something like chicken nuggets, yes, and it's like, no,
it's not just the texture yeah, or the flavor.
Speaker 1 (12:14):
Yes.
Speaker 3 (12:16):
My Daughterynes also had an issue with fruit and veggies.
When she was seven, she lived on a diet of
ham and cheese, pizza, and chocolate fingers. I know some
of you will be rolling your eyes thinking, we just
ate what was put in front of us in my day,
and I get it. It's very hard to understand if
you haven't lived it. I felt like an absolute failure
(12:37):
as a parent. But it was really obvious this wasn't
a choice for ynes.
Speaker 1 (12:43):
Yeah, and it wasn't a choice for either of you.
It's not a choice for you as a parent necessarily
to feed your child pizza every day. It's what your
child needs right now, just like it's not a choice
for her to eat pizza every day. It's what her
body needs right now, and it's what her sensory system
is telling her is safe, and so in order for
her to get some sense of safety in her day,
(13:04):
that's the way that that's happening for her.
Speaker 3 (13:08):
But of course we were so worried. The number one
advice we're given as parents is give good food, and
my daughter was surviving on a diet of crap. Where
is that cut off point? Like, if a child is
eating say three foods, and all the blood tests are fine,
(13:29):
their energy levels seem fine, you know, there'll be parents
that are listening that are like still petrified because they're
not maybe getting all the different food groups that we're
told to get. What point do you go, right, I've
got to get some help.
Speaker 1 (13:46):
Yeah, I think that's a really good question. So I
think if your child is eating less than ten foods.
You definitely want to go and see a health professional
and just have a checkup.
Speaker 3 (13:57):
When your child won't eat it is terrifying, and society
looks directly at the parents. But what if this extra
sensitivity is there for a reason.
Speaker 1 (14:08):
Twenty five of the scent of our population are considered
super tasters, and it's a really big stamp until you go, well,
hang on, think about all the people who are chefs,
and all the people that create wine, and all the
people that are doing gin distilleries. And you've got to
know flavor incredibly well, like, well beyond what I understand
flavor to be able to pull that off. So there's
(14:30):
spaces where these sensitivities are celebrated.
Speaker 3 (14:34):
So that's kind of slipping it on its head, isn't it.
It's going sure, I can look and other parents can
look at food as being problematic for our children, or
we can go actually, they can taste details we're oblivious to.
Speaker 1 (14:50):
Yeah.
Speaker 3 (14:51):
Absolutely, of course, sensory challenges go way beyond food. Like
so many kids in is really struggled with texture and
the feeling of clothes. I wish I'd known then that
this all of this is about what feels safe with
my daughter. Multiple challenges, multiple wonderful skills, but the one
(15:15):
that had the biggest limitation on her life was clothes.
Restriction in the clothes she could wear, and restriction in
the food she could eat. And here's a kid who's
so skinny wearing one dress every day through winter and summer.
It's so stressful. Of course it's stressful for them as well.
(15:38):
And now, looking back, I think, you know, I didn't
really understand that my stress around the situation was potentially
feeding into it. Excuse the pat I don't even know
what the question is here.
Speaker 1 (15:52):
I think what you just kind of showed us how
complex it is. You know, you had this child and
you wanted to clothe and feed her the kind of
basic needs, and you were failing as a parent because
you couldn't do those things. Well, I would reframe that
a little bit and say you were succeeding as a
parent because you were giving her the space to wear
one dress for a year. So to me, that is
successful parenting of neurodivergent person who's saying I don't want
(16:16):
to wear different clothes every day, and you've obviously said okay, cool,
if it's one dress this year. It's one dress this year,
so you weren't failing. You may have.
Speaker 3 (16:25):
Didn't roll out quite like that, Ellan, but we accepted
it obviously. No, it wasn't like we forced her into it,
but it was. Yeah, we understood that it wasn't a choice.
It was so confusing. It was such a confusing time.
Confusing is actually an understatement. At the time, I didn't
(16:46):
know any other kids who struggled with the world in
the same way Nazzy did. But then my friend Beck's
little son Nicholas, started having exactly the same sort of challenges.
Speaker 2 (16:59):
Do we have to the laces?
Speaker 1 (17:00):
No, I won't loaf.
Speaker 3 (17:02):
Yes, Nicholas is pretty much always barefoot. He hates shoes
and socks. But I've asked him to put a pair
of shoes on so that you, the audience can hear
just how cute the experience is for him. Does it
make you feel anxious when you know you've got a
shoe about to go on?
Speaker 2 (17:22):
Yep?
Speaker 1 (17:23):
Have I done it wrong?
Speaker 5 (17:25):
No?
Speaker 2 (17:25):
I just don't like socks or shoes.
Speaker 3 (17:30):
What a meaning I am? A yeah?
Speaker 1 (17:33):
Okay, you really?
Speaker 3 (17:36):
Eh, just quickly tell me how it feels.
Speaker 2 (17:43):
It feels horrible. They feel like my foot's stuck in
an itchy snail garden.
Speaker 3 (17:52):
I love it, and that she snaill garden. Well, I
don't love it. That sounds terrible. You just tell mammy
if you want to take it off. Suddenly realize this
is like child abuse.
Speaker 2 (18:02):
Okay, take it off. Can you take it off? She's right,
it is child abuse.
Speaker 3 (18:09):
I can take it off.
Speaker 1 (18:10):
Yeah, oh my god, don't report me.
Speaker 3 (18:12):
We can laugh. But this is the worst thing for Nicholas.
His tactile system is super sensitive, and Allan Nathan says
skin sensitivity is extremely tough to live with.
Speaker 1 (18:24):
You can't feel safe in your own body when your
skin feels like it's on fire, when it feels like
it's crawling all the time, or you can feel every
last piece of cloth on your body that is so hard.
You can't turn your tactile system off. If something is
too loud, you can cover your ears, if something is
too bright, you can put on sunglasses. But if your
(18:46):
skin is sensitive, you can't turn it off, and you
can't dampen it down. It goes with you everywhere.
Speaker 3 (18:53):
Nicholas is first school didn't understand how severe the experience
is for him. What was hard about the uniform.
Speaker 2 (19:01):
It was kind of itchy and scratchy. That's kind of annoying.
Perse my toes have to stay like this the entire
time kind of.
Speaker 3 (19:13):
And does it get to the point sometimes where you're
like all you can think about is that your toes
are like that?
Speaker 2 (19:19):
Yeah?
Speaker 3 (19:21):
And was the school uniform part of the reason that
you left that school? Yeah, beg Nicholas's mum jumps in
to explain.
Speaker 5 (19:31):
So the school was quite rigid with their school uniform,
and Nicholas couldn't wear the summer sandals. In the winter
they had to wear black leather shoes. Well, he just couldn't.
It was just too much when we tried, but it
just didn't work. So we got black shoes, but they
had white celes and they wouldn't allow that. So I
(19:53):
tried coloring them in, but it just wasn't okay. And
when I spoke to the school about it, I said,
he actually can't, and they said, well, we can't let
him do it because otherwise everyone else will be allowed
to do it. And the thing that upset me most
was they would give him a hard time about it.
(20:13):
And he was only five, and we bought so many
shoes didn't wear. How many shoes do we buy? Like
fifty yeah, like forfty pairs of shoes and we finally
found a pair, but they had white soles.
Speaker 3 (20:28):
It's not just about feet, our skin and touch receptors
are all over our body.
Speaker 1 (20:34):
It's hard. The tactile sense is one of the senses
that when it is hyper sensitive, we need to be
really gentle and understanding with people that this is incredibly
hard because you can't turn it off and you can't
get away from it.
Speaker 3 (20:49):
And Alan has a message for school policy makers.
Speaker 1 (20:53):
If you have a role in your school that says
that you must wear shoes and socks all day, why
sensory concerns are often invisible. You know what's happening inside
the nervous system, we can't see that, But what we
can see is how this person is behaving or coping. So,
if you're holding space for your genius inventors of the future,
(21:17):
if you're holding space for all kids, and if you're
running an inclusion policy, saying that there's a role that
you must wear this pair of shoes and this type
of sock is not inclusion.
Speaker 3 (21:31):
Misunderstanding of what's really going on can cause so much suffering.
But if we look at sensory differences as a whole,
I still don't really understand where they fit in the
neurodiversity paradigm. It really depends who you talk to. It's unique,
it's complicated, and the guidelines are constantly changing. One thing
(21:52):
we do know is these challenges seem to pretty much
always show up as part of an autism diagnosis.
Speaker 1 (21:58):
And I have never met in tested person that doesn't
have sensory differences compared to neurotypical.
Speaker 3 (22:04):
I guess the question is, can there sensory challenges exist
outside and autos and diagnosis.
Speaker 1 (22:09):
One, Yes, so you can have just a sensory processing difference,
and then sensory comes into lots of other conditions as well,
So there's often a sensory component to ADHD. For example,
there's often sensory differences when there's being trauma. There's often
(22:30):
sensory differences during period metopause, like, there's lots of times
when we might have sensory differences.
Speaker 3 (22:36):
Could you have sensory differences just because you have sensory differences?
Speaker 1 (22:40):
Yes, absolutely, you can just be born with a hypersensitive
tactile system and nothing else.
Speaker 3 (22:45):
Allen says we shouldn't get too hung up on diagnoses,
they are imprecise at best. Her focus is on gently
reducing anxiety and helping her young clients get to a
point where there are least restrictions on their lives. Is
to help them do whatever is important to them and
to their far no but it's not always easy, especially
(23:06):
when your challenges are the innocent noises of other people.
Speaker 6 (23:11):
In silent areas. I think that's when it becomes much worse,
because it's like it feels like they're yelling.
Speaker 3 (23:21):
Annabelle is a nineteen year old Wellington UNI student. She
has many sensory sensitivities. Food and smells are intense for her,
but the things she finds hardest are noises, and often
it's the innocent noises of other people. She tells me
what had really thrown her the day before this interview
(23:42):
a guy eating a pie.
Speaker 6 (23:47):
And he wasn't eating it obnoxiously, he wasn't doing anything
that was like deliberately stupid. But all I could hear
was this little smack like this, and the smacking of
the lips or that. I don't really know how to articulate,
but it almost hurt, like it hurt, like it's grating,
and it makes me want to go up and like
yell at the person. But I know that they're not
(24:08):
doing it spitefully and that would be stupid. But in
my head, like I cannot focus on anything else. And
like in lectures, for example, whispering, any sort of whispering,
I just it's just normal people things. For most people,
they wouldn't focus on it, But for me, my brain
just zooms in on a particular sound and that's all
(24:29):
I can hear. Internally, it's like I'm yelling and little
things like there was a person sitting behind me in
a lecture the other day. I could hear breathing.
Speaker 3 (24:41):
And while I don't consider myself a problematic breather or
whisperer or lipsmacker, it turns out to Annabelle, I am.
Speaker 6 (24:50):
There was a person behind me who keeps smacking their
lips the entire like that what you just did? I
just heard that?
Speaker 1 (25:00):
Do something?
Speaker 2 (25:00):
Well?
Speaker 6 (25:00):
See, no, but like I can hear it, like there's
just a little like.
Speaker 3 (25:04):
Can you hear me doing that?
Speaker 1 (25:09):
Yes? Right, I was just testing you to see.
Speaker 6 (25:12):
But that's so that's normal, you know, it's normal human actip.
That's what makes it. It's not I should not be
able to tell people that they can't, I don't know,
breathe because it always.
Speaker 1 (25:20):
You know, yeah, stop breathing. As really irritated because.
Speaker 6 (25:22):
It's just normal human activity and stuff. But because I
have a lovely little brain, it's just a lot harder
to navigate.
Speaker 3 (25:31):
Okay, so we'll there be situations where that same person
could be breathing, but because your day has kind of
been really cruisy and nothing else said and you wouldn't
even notice it.
Speaker 6 (25:41):
I think, so, yeah, it gets way worse when I've
had it. If something's already kind of racked me up,
then suddenly everything becomes ten times worse. Often, if I've had,
you know, like I've had a really cruizy day and
something someone's doing the same breathing thing, I might I
would hear it, but I think I would. Often i'd
(26:02):
been more.
Speaker 3 (26:03):
You'd be able to do what most of us can do,
which is just go, oh that's annoying, but I'll go
back to what I'm doing.
Speaker 6 (26:08):
Yeah, Well, to an extent, I don't feel as angry.
Speaker 3 (26:13):
How do you get through life? Because there are so
many instances like that that you can't avoid it.
Speaker 6 (26:21):
I just have to deal with it because I can't
make people stop breathing or I can't make you know
it sounds go away. So often by the end of
the day, I'm just I just need to like lie down.
Speaker 3 (26:34):
It's a lot to deal with. And sure, Annabelle and
Amburrows do have extreme sensitivities, but Allen Nathan says she
has many clients like this. It's not uncommon.
Speaker 1 (26:46):
Some of them can hear electricity in the wall. I
work with a girl who can hear the tiy three
gardens away from my house. So you imagine that your
average hearing, Like you're sitting having a conversation with somebody
in a cafe at the beach, over zoom, wherever it is.
You're not just listening in this little bubble that of
what you can see, you're listening three or four gardens away.
(27:10):
You can hear three or four gardens away. That's a
lot more sensory information you're taking in than the person
next to you, if they are neurotypical or don't have
that sensitivity. And then you times that by eight. Let's
say that you're sensitive in hearing and in touch and
in vision, and what my body is telling me. You know,
all these things. It's just so much information that if
(27:32):
you can control something like food, then you're going to
control food because actually you've just got to make life
simpler somewhere. And if you don't get to make the
choice about the clothesy where you have to go to
school in this uniform, well then sure I'll go to
school in this uniform, but I'm not able to eat
lunch as well. It's one or the other.
Speaker 3 (28:01):
Annabelle can't control the Pietas and lip smackers of the world,
and she really doesn't want to. But there are things
she can control, things that give her a sense of safety.
When those are disrupted, the response can be extreme. She
gives me an example a trip home from UNI recently
(28:23):
that led to a standoff with her younger sister.
Speaker 6 (28:27):
My sister was sitting in my chair at the dinner
table and I said, Samantha, that's my chair, Please can
you hop out of it? And she was laughing about it,
and I said, Samantha, I please get out of my chair.
And I couldn't. I can't explain what it actually was
that was so like triggering about that, but I just
completely lost the plot. She's just like, what, I don't
(28:49):
understand why it's.
Speaker 1 (28:51):
Why should you always give your way? And also what say?
Speaker 2 (28:53):
Yeah?
Speaker 6 (28:53):
And it's also like it's a seat, it's not a
big deal. And I'm like, I'm trying to articulate before
I have a meltdown, like I'm doing it to stop
the meltdown, and so right right, L and that didn't
you know anyway, So that's your time.
Speaker 3 (29:06):
I'm like basically almost trying to protect them, because you
can't be in control of what your body does when
there's change like that.
Speaker 1 (29:14):
Yeah, in that instance.
Speaker 3 (29:15):
So it's not that you're going I want to have
my way and I'm your sister. You're just going, honestly,
like this change is so messive for me.
Speaker 6 (29:23):
Yeah, it doesn't seem that way to you. And it's
just it's a cheer, like there's four other chairs, please,
like I wouldn't be this. But it's really hard for
people who don't think like that to actually even empathize
with that because they're just so irrational. And I can
see how it seems so irrational.
Speaker 3 (29:42):
And can you explain what it is about the seat
because it's not about the seat, I know, but about
the change. There will be other changes. The dinner itself
will be different. What is it about sitting in the
same place.
Speaker 6 (30:01):
It's the seat doesn't change. And in my head, that
is one regularity or one thing that like a constant. Yeah,
are constant, and I need that constant to regulate myself,
because yes, dinner's change and mood changes and everything like that.
But that seat and where I sit and how I
you know that space. I'm used to that. I'm comfortable
(30:24):
in that space.
Speaker 3 (30:26):
But from her, as a sixteen year old, she's going,
can you didn't even?
Speaker 1 (30:31):
You don't even?
Speaker 3 (30:32):
Yeah, so it's hard.
Speaker 1 (30:33):
It's hard.
Speaker 6 (30:34):
Yeah, and I know that it's hard for you know
people they just go, you're you're perhaving like a child,
and yeah, from the outside it kind of does look
like that.
Speaker 3 (30:43):
No, but you know what you've said, I'm not trying
to be difficult. I'm trying to create a situation where
I don't have a meltdown because I don't have that control.
And that's so interesting and it helps me and I
think help with a lot of parents people in general
just go, Okay, this is not You're not making this
about you. You're trying to almost protect Yeah, our happy dinner.
Speaker 6 (31:06):
That's the hard thing is you know, with my brain,
I will be saying a lot of eye statements and
how I feel like this and this and this. And
it's not because I am trying to only talk about
myself and everything's about me, But it's because I'm trying
to put in preventive measures so that everything stays happy.
Speaker 3 (31:27):
It must be so exhausting. Those like Annabelle are not
only managing a sensory onslaught, They're also dealing with a
society that is pretty unsympathetic. We have a super low
tolerance for people who need things to be a certain way.
My daughter's sensory challenges have eased so much in the
last few years. Other parents report the same. Is part
(31:50):
of that just getting older, we.
Speaker 1 (31:53):
Mature, things change, we can get used to certain things.
That's always going to be multi factors, right, There's just
going to be so much going on. So part of
it is the older we get, the more autonomy we have,
the more choice we get, the more autonomy we have
over our body. I don't like the smell, I'm going
to walk away, whereas a two year old or three
(32:15):
year old to four year old, they can't necessarily walk away,
or they can't put all that together yet I don't
like the smell, therefore I'm going to walk away. That's
actually quite an organized response to something that's stressful. And
as we get older and we practice that more and
more and we get better at it, it might just
be that where we have more control over ourselves and
(32:35):
our environment, there's not so many stresses anymore, or we
can act in a little bit more of a response
way rather than a reactionary way. We do know that
it does come through in the research and the evidence
that as people get older that their sensitivities do seem
to reduce. That the hyper sensitivities that we see a
(32:57):
lot in childhood in those teen age years are disappearing,
not completely. It's still there, but it's not as severe
or as difficult. It doesn't have such an effect on
life as it might do when you're younger.
Speaker 3 (33:13):
So things might ease up with age, but when you're
in the thick of it, it is hard as a
parent to stop from completely freaking out. It's very easy
as a parent to go, oh my god, my child
is the only one in the world going through this.
Speaker 1 (33:28):
So these difficulties are not uncommon. That's not uncommon at all.
What you need to know is your child doesn't feel
safe right now, and your role is to support them
to feel safe, and so the quickest, simplest way is
acceptance and empathy.
Speaker 3 (33:44):
Acceptance and empathy and knowing you're not alone, those can
be game changes. Twenty two year old Amberrows would love
the world to be more empathetic, but it takes an
understanding of how big this really is.
Speaker 4 (33:57):
Sometimes people will see, say, processing issues as just sort
of this arbitrary thing that just affects you when you
want to go to a concert or want to go
to a busy pub, but it has profound impacts. Every
aspect of your life is influenced by the way that
(34:19):
the world is fundamentally not designed for you. To succeed,
and to actually succeed takes an awful lot of effort
and an awful lot of perseverance.
Speaker 3 (34:33):
Perseverance and something both Amberrose and nineteen year old Annabelle
need to call on every single day. You'll hear more
from them in future episodes. I was blown away by
their courage and their incredible insight. Ellen Nathan says it's
proof that these so called challenges can end up being
great strengths.
Speaker 1 (34:54):
I think that a key factor for that working is
also have they had an experience in those younger years
where somebody has empathized with them and understood that, gosh,
this is big for you, this is uncomfortable for you.
How can I help? That's what we're trying to support them,
that this is big, and we acknowledge that there's no
(35:15):
get over it. It's not that bad. I can't smell it.
You know. Those sorts of responses aren't helpful. The responses
we need are acknowledgment and acceptance of how this child
is showing up in this moment, empathy for what they
might be experiencing, even if we don't fully understand it,
and then holding space to create safety around that experience,
(35:36):
like this is scary for you, but you're safe with me.
And then an element of Okay, what can we do
about it? Let's walk away from that smell, or let's
not bring that food into our house again, or I'm sorry,
I'm wearing that perfume. I won't do that again, So
that we create a little sense of control around what
just happened, and then over time we learn that these
things can be controlled in some way. It can be
(35:58):
controlled in a way that's not so scary. Inn Whereas
if we've had a really long period of time where
we've got these sensitivities and no one's really acknowledging them
and no one's really helping us, then those sensitivities may
not disappear because we're still actually in flight flight fright
when we're responding to those sensitivities.
Speaker 3 (36:19):
Amber Rose is passionate about helping the vulnerable. It's what
gives her the drive to push through the many obstacles
she faces daily. She was president of the Disabled Students
Association at vic UNI, and this role honed her diplomatic skills.
So I ask you, what's the neck to advocacy and diplomacy?
Speaker 4 (36:41):
So you have to be calm and patient and try
and be articulate with what you're saying when people are
diminishing your humanity, which is quite difficult. It's us meeting
in the middle. It's I'm coming to you, you're coming
to me, meeting in the middle.
Speaker 1 (37:01):
How old are you ever?
Speaker 4 (37:02):
A Rose ain't twenty two.
Speaker 3 (37:04):
There are very few twenty two year olds who have
reached that level of emotional understanding that those sort of
skills are things that people get to eighty two and
don't have. So I think you have so much to
offer the world. I think you have a message for
the world. Thank you, Thank you so much. Next week
(37:27):
on No Such Thing as Normal Anigamore on ADHD.
Speaker 1 (37:32):
As you go through all this turmoil, what Ami, Why
am I this way? Why am I failing in life?
Speaker 4 (37:39):
Where in fact you're not failing in life.
Speaker 1 (37:41):
You're amazing and you do amazing things, but you be
something missing and that's your a diagnosis.
Speaker 3 (37:47):
If you like this podcast, please rate and review it.
It helps people find it. No Such Thing as Normal
as produced and presented by me Sonia Gray. Nathan King
is the editor. Owen O'Connor and Mitchell Hawks are executive producers.
Production assistant is Beck's War. The series is brought to
you by the New Zealand Herald and Team Uniform and
(38:08):
it's made with the support of New Zealand on Air.
New episodes of No Such Thing As Normal are available
every Saturday wherever you get your podcasts.
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