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