Episode 11: Sensory Challenges - when you feel too much

The fire alarm system has operated stand by for further instruction. Hi, do you need to make me off?

Yeah? Just wait.

A fire alarm is disruptive for anyone, but twenty two year old amber Rose finds the experience overwhelming.

It was too loud and to bright, and it was hor ndous.

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 this is no such thing as normal. We're exploring the complex world of neurodiversity, adhd, autism, dyslexia, dyspraxia, what do

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 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.

So I'm based.

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.

So I have been diagnosed with autism, spectrum disorder, dyslexia, dyspoxia, and seated disorder.

To write like epilepsia.

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. That fire alarm. It was brutal.

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 a daily basis, all day, every day.

Part of what makes the average day had for Amburrows is public transport, the noise, the flashing lights, the proximity to people.

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, 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.

Yeah, it's you know, what I'm thinking now is how do you get through a day.

How do I do.

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 aren't seeing that, not really comprehending the actual issue, the difficulty behind that, and being fundamentally incapable of articulating to

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.

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 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,

Yes, that makes so much sense.

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 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

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 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

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.

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

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 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.

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.

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.

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 the fruits and vegetables is definitely an issue there. Sometimes there's the sexua, sometimes it's just kind of an unusual flavor,

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.

Yes.

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 as a parent. But it was really obvious this wasn't a choice for ynes.

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, that's the way that that's happening for her.

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, 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

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.

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.

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 spaces where these sensitivities are celebrated.

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.

Yeah.

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 that had the biggest limitation on her life was clothes. Restriction in the clothes she could wear, and restriction in

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

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 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.

Do we have to the laces?

No, I won't loaf.

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?

Yep?

Have I done it wrong?

No?

I just don't like socks or shoes.

What a meaning I am? A yeah?

Okay, you really?

Eh, just quickly tell me how it feels.

It feels horrible. They feel like my foot's stuck in an itchy snail garden.

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.

Okay, take it off. Can you take it off? She's right, it is child abuse.

I can take it off.

Yeah, oh my god, don't report me.

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.

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 skin is sensitive, you can't turn it off, and you can't dampen it down. It goes with you everywhere.

Nicholas is first school didn't understand how severe the experience is for him. What was hard about the uniform.

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.

And does it get to the point sometimes where you're like all you can think about is that your toes are like that?

Yeah?

And was the school uniform part of the reason that you left that school? Yeah, beg Nicholas's mum jumps in to explain.

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

It's not just about feet, our skin and touch receptors are all over our body.

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.

And Alan has a message for school policy makers.

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

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 we do know is these challenges seem to pretty much always show up as part of an autism diagnosis.

And I have never met in tested person that doesn't have sensory differences compared to neurotypical.

I guess the question is, can there sensory challenges exist outside and autos and diagnosis.

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 sensory differences during period metopause, like, there's lots of times when we might have sensory differences.

Could you have sensory differences just because you have sensory differences?

Yes, absolutely, you can just be born with a hypersensitive tactile system and nothing else.

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 when your challenges are the innocent noises of other people.

In silent areas. I think that's when it becomes much worse, because it's like it feels like they're yelling.

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 a guy eating a pie.

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 doing it spitefully and that would be stupid. But in

And while I don't consider myself a problematic breather or whisperer or lipsmacker, it turns out to Annabelle, I am.

There was a person behind me who keeps smacking their lips the entire like that what you just did? I just heard that?

Do something?

Well?

See, no, but like I can hear it, like there's just a little like.

Can you hear me doing that?

Yes? Right, I was just testing you to see.

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.

You know, yeah, stop breathing. As really irritated because.

It's just normal human activity and stuff. But because I have a lovely little brain, it's just a lot harder to navigate.

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.

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 been more.

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.

Yeah, Well, to an extent, I don't feel as angry.

How do you get through life? Because there are so many instances like that that you can't avoid it.

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.

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.

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.

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 that led to a standoff with her younger sister.

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 understand why it's.

Why should you always give your way? And also what say?

Yeah?

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.

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.

Yeah, in that instance.

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.

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.

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.

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 in that space.

But from her, as a sixteen year old, she's going, can you didn't even?

You don't even?

Yeah, so it's hard.

It's hard.

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.

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.

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.

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 of that just getting older, we.

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 year old to four year old, they can't necessarily walk away, or they can't put all that together yet I don't

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.

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.

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.

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 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.

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.

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 get over it. It's not that bad. I can't smell it.

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?

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.

How old are you ever?

A Rose ain't twenty two.

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 on No Such Thing as Normal Anigamore on ADHD.

As you go through all this turmoil, what Ami, Why am I this way? Why am I failing in life?

Where in fact you're not failing in life.

You're amazing and you do amazing things, but you be something missing and that's your a diagnosis.

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 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.