WEBVTT - Episode 11: Sensory Challenges - when you feel too much 0:00:04.000 --> 0:00:11.760 The fire alarm system has operated stand by for further instruction. Hi, 0:00:11.840 --> 0:00:12.760 do you need to make me off? 0:00:13.360 --> 0:00:14.640 Yeah? Just wait. 0:00:17.000 --> 0:00:20.840 A fire alarm is disruptive for anyone, but twenty two 0:00:20.920 --> 0:00:24.280 year old amber Rose finds the experience overwhelming. 0:00:24.920 --> 0:00:27.520 It was too loud and to bright, and it was 0:00:27.920 --> 0:00:28.480 hor ndous. 0:00:28.880 --> 0:00:34.680 Yes, amber Rose has multiple sensory challenges. Touch, smells, noise, 0:00:35.000 --> 0:00:39.280 light are all really hard. So a fire alarm in 0:00:39.360 --> 0:00:43.080 my hotel just before our interview was pretty much the 0:00:43.120 --> 0:00:47.040 worst thing that could happen. I'm so sorry. Come on 0:00:47.200 --> 0:00:54.960 and we'll get you inside. Gelder, I'm Sonia Gray, and 0:00:55.000 --> 0:00:58.320 this is no such thing as normal. We're exploring the 0:00:58.360 --> 0:01:04.120 complex world of neurodiversity, adhd, autism, dyslexia, dyspraxia, what do 0:01:04.200 --> 0:01:07.440 they even mean? In this series you'll hear from experts 0:01:07.720 --> 0:01:11.080 and from many wonderful people who experienced the world in 0:01:11.120 --> 0:01:24.000 a unique way. We're looking at neurodiversity from the inside. 0:01:25.640 --> 0:01:30.240 In this episode, we're exploring sensory sensitivities. Why do some 0:01:30.280 --> 0:01:34.640 people find taste, texture, sound, and light so difficult to 0:01:34.680 --> 0:01:43.600 cope with? And are these challenges even real? Can you 0:01:43.640 --> 0:01:47.760 tell me what that experience is like for you what 0:01:47.840 --> 0:01:51.400 it actually feels like having that noise and the lights 0:01:51.440 --> 0:01:52.680 in the chaos. 0:01:54.240 --> 0:01:57.360 It would be hard for me to explain, but I 0:01:57.400 --> 0:02:00.919 think the best way could articulate it is like smothering. 0:02:02.880 --> 0:02:06.000 Everything happens all at once, and for most people they 0:02:06.000 --> 0:02:08.720 can just filter out what it is and isn't important. 0:02:08.880 --> 0:02:11.520 But for me, I can't really filter it out. So 0:02:11.960 --> 0:02:18.680 I hear everything, I see everything. It's quite difficult for 0:02:18.800 --> 0:02:21.480 me to handle that because that's a lot of information 0:02:21.800 --> 0:02:24.520 for you to process, which is why you're not really 0:02:24.560 --> 0:02:27.639 meant to. That's why most people's brains filter it out. 0:02:29.880 --> 0:02:31.040 So I'm based. 0:02:30.919 --> 0:02:38.760 It's not easy to watch someone in such distress, but 0:02:38.880 --> 0:02:41.680 amber Rose is determined to carry on with the interview. 0:02:42.680 --> 0:02:47.440 I ask about how unique and beautifully complex neurological profile. 0:02:49.440 --> 0:02:57.040 So I have been diagnosed with autism, spectrum disorder, dyslexia, dyspoxia, 0:02:57.560 --> 0:02:59.720 and seated disorder. 0:03:00.120 --> 0:03:01.600 To write like epilepsia. 0:03:01.960 --> 0:03:06.960 Yes, amber Rose is way more than just these diagnoses. 0:03:07.520 --> 0:03:11.280 She studied psychology and sociology at ic UNI and now 0:03:11.320 --> 0:03:14.560 she's part of the gov Tech Talent Graduate Program. She 0:03:14.760 --> 0:03:18.720 is incredibly smart, but the flip side is she feels 0:03:18.760 --> 0:03:22.040 the world with an intensity that most of us can't imagine. 0:03:22.639 --> 0:03:24.960 That fire alarm. It was brutal. 0:03:27.280 --> 0:03:30.760 That was not a good start to this, for sure, 0:03:32.720 --> 0:03:36.480 But at the same time, I guess it is symptomatic 0:03:36.520 --> 0:03:39.400 of my everyday life. It's I guess it's not that 0:03:39.800 --> 0:03:43.440 distinct from what happens to me every day. I mean, 0:03:43.920 --> 0:03:46.560 it was definitely more intense than it tomally is, but 0:03:46.840 --> 0:03:51.120 it's exactly the same century processing problems I have on 0:03:51.120 --> 0:03:58.320 a daily basis, all day, every day. 0:03:59.200 --> 0:04:02.080 Part of what makes the average day had for Amburrows 0:04:02.320 --> 0:04:06.800 is public transport, the noise, the flashing lights, the proximity 0:04:06.840 --> 0:04:07.320 to people. 0:04:08.360 --> 0:04:11.160 I mean, my train during these only twelve minutes, but 0:04:11.320 --> 0:04:16.000 it feels like an eternity sometimes, and I think the 0:04:16.200 --> 0:04:24.479 difficulty there is no one's seeing that the building I 0:04:24.560 --> 0:04:27.240 work in has a really loud air conditioner and I 0:04:27.279 --> 0:04:29.760 got them to turn the lights off over my desk, 0:04:30.000 --> 0:04:33.720 but all the other lights are still on. Then sort 0:04:33.720 --> 0:04:38.039 of have a day of blocking out air conditioning but 0:04:38.320 --> 0:04:42.320 also trying to still pay attention to everything else, which 0:04:42.360 --> 0:04:45.200 is a juggling act I'm not very good at. 0:04:46.880 --> 0:04:51.480 Yeah, it's you know, what I'm thinking now is how 0:04:51.520 --> 0:04:56.560 do you get through a day. 0:04:57.000 --> 0:04:57.520 How do I do. 0:05:03.120 --> 0:05:07.400 It's just one step at a time. I suppose just 0:05:08.160 --> 0:05:10.760 one step at a time, trying to take a dig, breath, 0:05:11.360 --> 0:05:14.160 do something. No, it's going to be hard. Now you're 0:05:14.200 --> 0:05:18.440 going to be upset that, you're going to get incredibly distressed, 0:05:19.200 --> 0:05:23.320 but you also just have to do it. Obviously, people 0:05:23.400 --> 0:05:29.400 aren't seeing that, not really comprehending the actual issue, the 0:05:29.520 --> 0:05:36.400 difficulty behind that, and being fundamentally incapable of articulating to 0:05:36.480 --> 0:05:41.080 people what the issue is. Which is why I'm stressed 0:05:41.120 --> 0:05:43.120 about talking to you, is I know that I don't 0:05:43.200 --> 0:05:46.039 have the words to explain, because I don't think anyone 0:05:46.279 --> 0:05:49.919 would have the words to explain such a complicated matter 0:05:50.080 --> 0:05:51.560 if they hadn't experienced it. 0:05:53.400 --> 0:05:56.760 Not many of us do experience sensitivity to this degree, 0:05:57.040 --> 0:05:59.640 but we can all relate. If you think about things 0:05:59.680 --> 0:06:02.159 like fingernails down a chalkboard or the sound of a 0:06:02.200 --> 0:06:05.880 power drill. That is sensory overload for most people, but 0:06:05.880 --> 0:06:08.640 we can avoid these for the most part. For people 0:06:08.680 --> 0:06:12.120 that gain a rows, the triggers are everywhere, and her 0:06:12.200 --> 0:06:14.400 challenges extend to food. 0:06:15.520 --> 0:06:17.800 I would describe my poet as that of a very 0:06:17.839 --> 0:06:21.560 fusty seven year old I don't like foods touching geechebat, 0:06:21.640 --> 0:06:27.320 I don't like strong flavors. I don't like very contrasting flavors. 0:06:27.400 --> 0:06:30.719 So what I mostly eat is pasta and chicken nuggets 0:06:30.760 --> 0:06:35.000 and sweet corn, but sometimes chips, sometimes other things, but 0:06:35.120 --> 0:06:39.600 mostly very homogeneous foods. And I think that's one of 0:06:39.640 --> 0:06:44.719 the keys to understanding what I like is the uniform 0:06:44.839 --> 0:06:48.440 nature of it. So if you eat a chicken nugget, 0:06:48.480 --> 0:06:51.919 it pretty much tastes the exact same every single time, 0:06:52.160 --> 0:06:56.400 whereas some things you eat and it's quite unpredictable. So, 0:06:57.279 --> 0:07:00.280 for instance, strawberries, you might buys to strawbery might be 0:07:00.360 --> 0:07:03.440 quite firm, it might be quite squishy, it might be watery, 0:07:04.000 --> 0:07:06.400 you don't really know. If you eat a chicken nugget, 0:07:06.680 --> 0:07:10.600 it just always tastes like chicken nugget. So even though 0:07:11.200 --> 0:07:14.800 I can say objectively that chicken nuggets are the nicest 0:07:14.840 --> 0:07:18.080 tasting food in the world, they are always the exact same. 0:07:18.760 --> 0:07:20.520 Yes, that makes so much sense. 0:07:21.640 --> 0:07:24.840 I like strawberries too, Yes, And I've never really thought 0:07:24.880 --> 0:07:27.119 about the fact that a lot of the time, probably 0:07:27.200 --> 0:07:29.080 more than half the time, when I eat a strawberry, 0:07:29.360 --> 0:07:32.880 it's disappointing. Yes, but then if I take that experience 0:07:32.920 --> 0:07:37.760 and go but for amburrows, it's multiplied. Yes, it does 0:07:37.840 --> 0:07:50.440 make sense. Yes, let's talk about chicken nuggets. Even when 0:07:50.480 --> 0:07:53.440 there's very little ells they can eat. Most could seem 0:07:53.480 --> 0:07:56.280 to tolerate the nugget. Sure, you know what you're gonna 0:07:56.280 --> 0:07:58.280 get with the chicken nugget. But there are lots of 0:07:58.320 --> 0:08:02.960 predictable foods. And Nathan is an occupational therapist who specializes 0:08:03.000 --> 0:08:06.040 in the sensory system, and I ask her, what's the 0:08:06.120 --> 0:08:07.720 deal with chicken nuggets? 0:08:09.400 --> 0:08:12.520 So when we think about a chicken nugget, it's already 0:08:12.600 --> 0:08:16.720 been pre chewed by the machine that makes it. So 0:08:16.840 --> 0:08:20.560 this whole piece of meat has been kind of minced 0:08:20.640 --> 0:08:23.200 down a little bit, buy a machine, and then put 0:08:23.240 --> 0:08:27.119 back together in some way. So for some people, having 0:08:27.120 --> 0:08:30.280 that pre chewed piece done makes it actually easier for 0:08:30.320 --> 0:08:33.480 them to then chew and swallow. When we're eating say, 0:08:33.520 --> 0:08:35.960 different chicken, we might have roast chicken, we might have 0:08:36.040 --> 0:08:38.880 chicken breast, we might have chicken thigh, we might have 0:08:38.960 --> 0:08:43.800 chicken tenders. All of those chickens come with different types 0:08:43.920 --> 0:08:49.280 of texture and different sizes and different shapes, and so 0:08:49.360 --> 0:08:53.760 that's all different information. That our mouth needs to be 0:08:53.960 --> 0:08:57.000 figuring out when is the point to swallow, and so 0:08:57.160 --> 0:08:58.960 for some people that's just really hard. 0:09:00.720 --> 0:09:04.280 Most of us chew and swallow without thinking. But Allen says, 0:09:04.320 --> 0:09:07.600 the active eating is actually really complex. There's a whole 0:09:07.600 --> 0:09:11.960 lot going on, and certain foods are particularly problematic, like 0:09:12.000 --> 0:09:14.800 the ones we're desperate to get into our kids. Fruit 0:09:15.160 --> 0:09:20.439 and vegetables, they are so incredibly unpredictable. Vegetables are a 0:09:20.440 --> 0:09:21.760 little bit better actually than fruit. 0:09:22.120 --> 0:09:24.040 But you know, you might get a punnet of blueberries, 0:09:24.360 --> 0:09:27.600 and every blueberry is slightly different, you know, the different shapes, 0:09:27.600 --> 0:09:30.880 the different sizes. Whereas you buy a packet of biscuits 0:09:31.280 --> 0:09:34.080 and every single one looks very similar. You know, you've 0:09:34.120 --> 0:09:37.240 got that row of chocolate fingers, like every mouthful is 0:09:37.280 --> 0:09:39.920 the same. So if you take that back to a 0:09:39.960 --> 0:09:43.920 single mouthful of say a blueberry, and it pops in 0:09:44.280 --> 0:09:48.320 and you're a super taster, and you get a million 0:09:48.520 --> 0:09:52.480 different data points around that blueberry because it's new and 0:09:52.520 --> 0:09:54.559 it's different, And then you have the second blueberry it's 0:09:54.559 --> 0:09:56.360 a little bit more squishy. So now you've got all 0:09:56.400 --> 0:10:00.520 this other information that you're processing versus your chop finger 0:10:01.000 --> 0:10:02.839 that every time you bite it, it's the same. 0:10:04.600 --> 0:10:08.079 I know what it sounds like, clever kids just holding 0:10:08.080 --> 0:10:11.600 out for sugar and junk food. In reality, it's about 0:10:11.679 --> 0:10:17.680 which foods feel safe and which foods really don't. So 0:10:18.480 --> 0:10:23.599 there will be people listening ellen that are thinking to themselves, 0:10:24.000 --> 0:10:28.720 any kid will eat anything, they're hungry. Just don't feed 0:10:28.720 --> 0:10:31.080 them anything else and they'll eat. What would you say 0:10:31.120 --> 0:10:34.720 to that, the person that says, picky eaters just need 0:10:34.840 --> 0:10:36.160 to be left to get hungry. 0:10:36.480 --> 0:10:41.800 Yeah, I think pegging my words carefully. I think that 0:10:43.960 --> 0:10:45.760 one of the things I often reflect on when I'm 0:10:45.800 --> 0:10:48.439 working with these kids is yeah, I can offer them 0:10:48.559 --> 0:10:51.400 caramelo chocolate, I can offer them McDonald's and they'll still 0:10:51.440 --> 0:10:55.720 say no. They're avoiding the vegetables because they are so 0:10:55.880 --> 0:10:57.199 incredibly unpredictable. 0:10:58.640 --> 0:11:02.920 Amber Ross food seendivities have followed her into adulthood, and 0:11:02.960 --> 0:11:06.800 the anxiety around fruit and veggies is too much. But 0:11:06.880 --> 0:11:11.440 she does eat sweetcorn. It's one of her three staple foods. Yes, 0:11:11.600 --> 0:11:14.960 it's a vegetable, but it's also predictable. 0:11:16.240 --> 0:11:19.319 It's like if you buy a ten of the exact 0:11:19.320 --> 0:11:22.320 same brand of sweet corn, it probably tastes exactly the 0:11:22.320 --> 0:11:26.000 same every time. But if you go out and buy 0:11:26.040 --> 0:11:29.880 the same brand of apple, then it's not necessarily going 0:11:29.960 --> 0:11:33.080 to be the same every time. In fact, even you 0:11:33.160 --> 0:11:35.080 got an apple from the exact same tree at the 0:11:35.080 --> 0:11:39.560 same time, it wouldn't taste the same. So I think 0:11:39.559 --> 0:11:43.880 the fruits and vegetables is definitely an issue there. Sometimes 0:11:43.920 --> 0:11:49.360 there's the sexua, sometimes it's just kind of an unusual flavor, 0:11:49.679 --> 0:11:54.000 and sometimes there's the impresictibility. Normally it's all three combined. 0:11:54.840 --> 0:11:57.800 Yeah, it's like, we want to go what is it? 0:11:57.840 --> 0:12:00.800 Is it the smell? Is it the texture? And that 0:12:00.880 --> 0:12:03.600 must be so frustrating for you because people will serve 0:12:03.679 --> 0:12:06.520 something up that they think you'll leat because they'll be like, oh, 0:12:06.559 --> 0:12:11.040 we got something like chicken nuggets, yes, and it's like, no, 0:12:11.080 --> 0:12:14.440 it's not just the texture yeah, or the flavor. 0:12:14.800 --> 0:12:15.160 Yes. 0:12:16.480 --> 0:12:19.440 My Daughterynes also had an issue with fruit and veggies. 0:12:19.679 --> 0:12:21.440 When she was seven, she lived on a diet of 0:12:21.440 --> 0:12:24.959 ham and cheese, pizza, and chocolate fingers. I know some 0:12:25.000 --> 0:12:28.040 of you will be rolling your eyes thinking, we just 0:12:28.240 --> 0:12:30.080 ate what was put in front of us in my day, 0:12:30.880 --> 0:12:33.800 and I get it. It's very hard to understand if 0:12:33.800 --> 0:12:37.559 you haven't lived it. I felt like an absolute failure 0:12:37.559 --> 0:12:40.839 as a parent. But it was really obvious this wasn't 0:12:40.920 --> 0:12:42.040 a choice for ynes. 0:12:43.520 --> 0:12:45.760 Yeah, and it wasn't a choice for either of you. 0:12:46.000 --> 0:12:48.439 It's not a choice for you as a parent necessarily 0:12:48.440 --> 0:12:51.080 to feed your child pizza every day. It's what your 0:12:51.120 --> 0:12:53.880 child needs right now, just like it's not a choice 0:12:53.920 --> 0:12:56.120 for her to eat pizza every day. It's what her 0:12:56.160 --> 0:12:59.040 body needs right now, and it's what her sensory system 0:12:59.120 --> 0:13:02.000 is telling her is safe, and so in order for 0:13:02.040 --> 0:13:04.360 her to get some sense of safety in her day, 0:13:04.480 --> 0:13:07.719 that's the way that that's happening for her. 0:13:08.360 --> 0:13:12.400 But of course we were so worried. The number one 0:13:12.400 --> 0:13:16.400 advice we're given as parents is give good food, and 0:13:16.480 --> 0:13:21.040 my daughter was surviving on a diet of crap. Where 0:13:21.160 --> 0:13:23.800 is that cut off point? Like, if a child is 0:13:23.840 --> 0:13:29.080 eating say three foods, and all the blood tests are fine, 0:13:29.600 --> 0:13:33.880 their energy levels seem fine, you know, there'll be parents 0:13:33.880 --> 0:13:37.960 that are listening that are like still petrified because they're 0:13:37.960 --> 0:13:41.800 not maybe getting all the different food groups that we're 0:13:41.800 --> 0:13:44.520 told to get. What point do you go, right, I've 0:13:44.520 --> 0:13:45.840 got to get some help. 0:13:46.200 --> 0:13:48.520 Yeah, I think that's a really good question. So I 0:13:48.520 --> 0:13:51.760 think if your child is eating less than ten foods. 0:13:51.880 --> 0:13:53.920 You definitely want to go and see a health professional 0:13:54.320 --> 0:13:56.000 and just have a checkup. 0:13:57.200 --> 0:14:01.239 When your child won't eat it is terrifying, and society 0:14:01.440 --> 0:14:05.120 looks directly at the parents. But what if this extra 0:14:05.200 --> 0:14:07.680 sensitivity is there for a reason. 0:14:08.520 --> 0:14:11.280 Twenty five of the scent of our population are considered 0:14:11.320 --> 0:14:14.160 super tasters, and it's a really big stamp until you go, well, 0:14:14.160 --> 0:14:16.640 hang on, think about all the people who are chefs, 0:14:17.080 --> 0:14:19.800 and all the people that create wine, and all the 0:14:19.800 --> 0:14:23.400 people that are doing gin distilleries. And you've got to 0:14:23.480 --> 0:14:27.160 know flavor incredibly well, like, well beyond what I understand 0:14:27.200 --> 0:14:30.040 flavor to be able to pull that off. So there's 0:14:30.080 --> 0:14:33.760 spaces where these sensitivities are celebrated. 0:14:34.760 --> 0:14:37.760 So that's kind of slipping it on its head, isn't it. 0:14:37.760 --> 0:14:40.800 It's going sure, I can look and other parents can 0:14:40.880 --> 0:14:44.120 look at food as being problematic for our children, or 0:14:44.160 --> 0:14:49.960 we can go actually, they can taste details we're oblivious to. 0:14:50.440 --> 0:14:51.000 Yeah. 0:14:51.040 --> 0:14:57.320 Absolutely, of course, sensory challenges go way beyond food. Like 0:14:57.400 --> 0:15:00.800 so many kids in is really struggled with texture and 0:15:00.840 --> 0:15:05.040 the feeling of clothes. I wish I'd known then that 0:15:05.120 --> 0:15:10.560 this all of this is about what feels safe with 0:15:10.600 --> 0:15:15.640 my daughter. Multiple challenges, multiple wonderful skills, but the one 0:15:15.680 --> 0:15:21.480 that had the biggest limitation on her life was clothes. 0:15:21.720 --> 0:15:25.440 Restriction in the clothes she could wear, and restriction in 0:15:25.480 --> 0:15:28.000 the food she could eat. And here's a kid who's 0:15:28.040 --> 0:15:32.960 so skinny wearing one dress every day through winter and summer. 0:15:33.280 --> 0:15:38.200 It's so stressful. Of course it's stressful for them as well. 0:15:38.920 --> 0:15:42.000 And now, looking back, I think, you know, I didn't 0:15:42.040 --> 0:15:46.880 really understand that my stress around the situation was potentially 0:15:46.880 --> 0:15:51.040 feeding into it. Excuse the pat I don't even know 0:15:51.080 --> 0:15:51.960 what the question is here. 0:15:52.160 --> 0:15:54.680 I think what you just kind of showed us how 0:15:54.680 --> 0:15:56.720 complex it is. You know, you had this child and 0:15:56.720 --> 0:15:58.400 you wanted to clothe and feed her the kind of 0:15:58.520 --> 0:16:01.800 basic needs, and you were failing as a parent because 0:16:01.840 --> 0:16:04.520 you couldn't do those things. Well, I would reframe that 0:16:04.560 --> 0:16:06.760 a little bit and say you were succeeding as a 0:16:06.840 --> 0:16:09.000 parent because you were giving her the space to wear 0:16:09.040 --> 0:16:11.240 one dress for a year. So to me, that is 0:16:11.320 --> 0:16:16.520 successful parenting of neurodivergent person who's saying I don't want 0:16:16.520 --> 0:16:19.800 to wear different clothes every day, and you've obviously said okay, cool, 0:16:20.040 --> 0:16:22.160 if it's one dress this year. It's one dress this year, 0:16:22.720 --> 0:16:25.120 so you weren't failing. You may have. 0:16:25.800 --> 0:16:29.600 Didn't roll out quite like that, Ellan, but we accepted 0:16:29.640 --> 0:16:33.320 it obviously. No, it wasn't like we forced her into it, 0:16:33.360 --> 0:16:38.200 but it was. Yeah, we understood that it wasn't a choice. 0:16:38.880 --> 0:16:41.320 It was so confusing. It was such a confusing time. 0:16:42.840 --> 0:16:46.480 Confusing is actually an understatement. At the time, I didn't 0:16:46.480 --> 0:16:49.080 know any other kids who struggled with the world in 0:16:49.120 --> 0:16:52.120 the same way Nazzy did. But then my friend Beck's 0:16:52.160 --> 0:16:56.080 little son Nicholas, started having exactly the same sort of challenges. 0:16:59.280 --> 0:17:00.760 Do we have to the laces? 0:17:00.960 --> 0:17:02.080 No, I won't loaf. 0:17:02.360 --> 0:17:07.520 Yes, Nicholas is pretty much always barefoot. He hates shoes 0:17:07.520 --> 0:17:09.840 and socks. But I've asked him to put a pair 0:17:09.840 --> 0:17:13.000 of shoes on so that you, the audience can hear 0:17:13.320 --> 0:17:18.800 just how cute the experience is for him. Does it 0:17:18.800 --> 0:17:20.680 make you feel anxious when you know you've got a 0:17:20.720 --> 0:17:21.879 shoe about to go on? 0:17:22.320 --> 0:17:22.639 Yep? 0:17:23.960 --> 0:17:24.840 Have I done it wrong? 0:17:25.320 --> 0:17:25.520 No? 0:17:25.840 --> 0:17:28.720 I just don't like socks or shoes. 0:17:30.480 --> 0:17:32.800 What a meaning I am? A yeah? 0:17:33.640 --> 0:17:34.639 Okay, you really? 0:17:36.080 --> 0:17:42.640 Eh, just quickly tell me how it feels. 0:17:43.280 --> 0:17:50.000 It feels horrible. They feel like my foot's stuck in 0:17:50.040 --> 0:17:51.720 an itchy snail garden. 0:17:52.760 --> 0:17:55.159 I love it, and that she snaill garden. Well, I 0:17:55.200 --> 0:17:58.680 don't love it. That sounds terrible. You just tell mammy 0:17:58.680 --> 0:18:00.680 if you want to take it off. Suddenly realize this 0:18:00.760 --> 0:18:01.560 is like child abuse. 0:18:02.160 --> 0:18:05.640 Okay, take it off. Can you take it off? She's right, 0:18:05.720 --> 0:18:06.840 it is child abuse. 0:18:09.040 --> 0:18:09.920 I can take it off. 0:18:10.160 --> 0:18:11.879 Yeah, oh my god, don't report me. 0:18:12.840 --> 0:18:15.920 We can laugh. But this is the worst thing for Nicholas. 0:18:16.520 --> 0:18:20.560 His tactile system is super sensitive, and Allan Nathan says 0:18:20.720 --> 0:18:23.520 skin sensitivity is extremely tough to live with. 0:18:24.640 --> 0:18:28.560 You can't feel safe in your own body when your 0:18:28.600 --> 0:18:30.919 skin feels like it's on fire, when it feels like 0:18:30.960 --> 0:18:33.600 it's crawling all the time, or you can feel every 0:18:33.680 --> 0:18:37.840 last piece of cloth on your body that is so hard. 0:18:38.080 --> 0:18:40.840 You can't turn your tactile system off. If something is 0:18:40.880 --> 0:18:43.639 too loud, you can cover your ears, if something is 0:18:43.640 --> 0:18:46.560 too bright, you can put on sunglasses. But if your 0:18:46.600 --> 0:18:49.040 skin is sensitive, you can't turn it off, and you 0:18:49.080 --> 0:18:52.240 can't dampen it down. It goes with you everywhere. 0:18:53.320 --> 0:18:56.840 Nicholas is first school didn't understand how severe the experience 0:18:56.960 --> 0:19:01.720 is for him. What was hard about the uniform. 0:19:01.800 --> 0:19:07.400 It was kind of itchy and scratchy. That's kind of annoying. 0:19:07.480 --> 0:19:11.960 Perse my toes have to stay like this the entire 0:19:12.040 --> 0:19:12.920 time kind of. 0:19:13.840 --> 0:19:16.840 And does it get to the point sometimes where you're 0:19:16.880 --> 0:19:18.960 like all you can think about is that your toes 0:19:18.960 --> 0:19:19.399 are like that? 0:19:19.800 --> 0:19:21.000 Yeah? 0:19:21.080 --> 0:19:24.159 And was the school uniform part of the reason that 0:19:24.320 --> 0:19:29.719 you left that school? Yeah, beg Nicholas's mum jumps in 0:19:29.760 --> 0:19:30.320 to explain. 0:19:31.080 --> 0:19:34.720 So the school was quite rigid with their school uniform, 0:19:35.400 --> 0:19:39.040 and Nicholas couldn't wear the summer sandals. In the winter 0:19:39.119 --> 0:19:42.320 they had to wear black leather shoes. Well, he just couldn't. 0:19:42.560 --> 0:19:45.760 It was just too much when we tried, but it 0:19:45.840 --> 0:19:49.399 just didn't work. So we got black shoes, but they 0:19:49.440 --> 0:19:53.240 had white celes and they wouldn't allow that. So I 0:19:53.400 --> 0:19:57.760 tried coloring them in, but it just wasn't okay. And 0:19:57.800 --> 0:20:00.840 when I spoke to the school about it, I said, 0:20:01.680 --> 0:20:04.119 he actually can't, and they said, well, we can't let 0:20:04.240 --> 0:20:06.480 him do it because otherwise everyone else will be allowed 0:20:06.520 --> 0:20:09.280 to do it. And the thing that upset me most 0:20:09.600 --> 0:20:12.920 was they would give him a hard time about it. 0:20:13.440 --> 0:20:16.200 And he was only five, and we bought so many 0:20:16.240 --> 0:20:20.280 shoes didn't wear. How many shoes do we buy? Like 0:20:20.680 --> 0:20:24.280 fifty yeah, like forfty pairs of shoes and we finally 0:20:24.320 --> 0:20:26.960 found a pair, but they had white soles. 0:20:28.720 --> 0:20:32.200 It's not just about feet, our skin and touch receptors 0:20:32.240 --> 0:20:33.720 are all over our body. 0:20:34.280 --> 0:20:37.800 It's hard. The tactile sense is one of the senses 0:20:37.840 --> 0:20:40.280 that when it is hyper sensitive, we need to be 0:20:40.359 --> 0:20:44.880 really gentle and understanding with people that this is incredibly 0:20:44.960 --> 0:20:48.040 hard because you can't turn it off and you can't 0:20:48.080 --> 0:20:48.960 get away from it. 0:20:49.960 --> 0:20:52.520 And Alan has a message for school policy makers. 0:20:53.720 --> 0:20:55.879 If you have a role in your school that says 0:20:55.920 --> 0:20:59.320 that you must wear shoes and socks all day, why 0:21:00.200 --> 0:21:05.159 sensory concerns are often invisible. You know what's happening inside 0:21:05.200 --> 0:21:08.840 the nervous system, we can't see that, But what we 0:21:09.000 --> 0:21:13.359 can see is how this person is behaving or coping. So, 0:21:13.440 --> 0:21:17.160 if you're holding space for your genius inventors of the future, 0:21:17.440 --> 0:21:21.120 if you're holding space for all kids, and if you're 0:21:21.200 --> 0:21:24.960 running an inclusion policy, saying that there's a role that 0:21:25.000 --> 0:21:27.240 you must wear this pair of shoes and this type 0:21:27.240 --> 0:21:29.119 of sock is not inclusion. 0:21:31.320 --> 0:21:35.800 Misunderstanding of what's really going on can cause so much suffering. 0:21:36.720 --> 0:21:39.119 But if we look at sensory differences as a whole, 0:21:39.720 --> 0:21:42.720 I still don't really understand where they fit in the 0:21:42.760 --> 0:21:48.000 neurodiversity paradigm. It really depends who you talk to. It's unique, 0:21:48.240 --> 0:21:52.200 it's complicated, and the guidelines are constantly changing. One thing 0:21:52.240 --> 0:21:54.840 we do know is these challenges seem to pretty much 0:21:54.880 --> 0:21:57.640 always show up as part of an autism diagnosis. 0:21:58.680 --> 0:22:01.000 And I have never met in tested person that doesn't 0:22:01.000 --> 0:22:04.840 have sensory differences compared to neurotypical. 0:22:04.480 --> 0:22:07.760 I guess the question is, can there sensory challenges exist 0:22:07.960 --> 0:22:10.200 outside and autos and diagnosis. 0:22:09.960 --> 0:22:16.000 One, Yes, so you can have just a sensory processing difference, 0:22:16.520 --> 0:22:20.320 and then sensory comes into lots of other conditions as well, 0:22:20.520 --> 0:22:24.520 So there's often a sensory component to ADHD. For example, 0:22:24.720 --> 0:22:30.040 there's often sensory differences when there's being trauma. There's often 0:22:30.160 --> 0:22:34.000 sensory differences during period metopause, like, there's lots of times 0:22:34.040 --> 0:22:35.679 when we might have sensory differences. 0:22:36.160 --> 0:22:39.680 Could you have sensory differences just because you have sensory differences? 0:22:40.000 --> 0:22:42.880 Yes, absolutely, you can just be born with a hypersensitive 0:22:42.880 --> 0:22:44.400 tactile system and nothing else. 0:22:45.880 --> 0:22:48.600 Allen says we shouldn't get too hung up on diagnoses, 0:22:49.040 --> 0:22:53.359 they are imprecise at best. Her focus is on gently 0:22:53.400 --> 0:22:56.639 reducing anxiety and helping her young clients get to a 0:22:56.680 --> 0:23:00.479 point where there are least restrictions on their lives. Is 0:23:00.520 --> 0:23:02.840 to help them do whatever is important to them and 0:23:02.880 --> 0:23:06.560 to their far no but it's not always easy, especially 0:23:06.560 --> 0:23:10.360 when your challenges are the innocent noises of other people. 0:23:11.920 --> 0:23:14.879 In silent areas. I think that's when it becomes much worse, 0:23:15.119 --> 0:23:19.959 because it's like it feels like they're yelling. 0:23:21.920 --> 0:23:25.560 Annabelle is a nineteen year old Wellington UNI student. She 0:23:25.760 --> 0:23:30.560 has many sensory sensitivities. Food and smells are intense for her, 0:23:31.240 --> 0:23:34.960 but the things she finds hardest are noises, and often 0:23:35.040 --> 0:23:39.119 it's the innocent noises of other people. She tells me 0:23:39.200 --> 0:23:41.880 what had really thrown her the day before this interview 0:23:42.640 --> 0:23:45.000 a guy eating a pie. 0:23:47.520 --> 0:23:50.399 And he wasn't eating it obnoxiously, he wasn't doing anything 0:23:50.480 --> 0:23:53.360 that was like deliberately stupid. But all I could hear 0:23:53.520 --> 0:23:57.680 was this little smack like this, and the smacking of 0:23:57.720 --> 0:23:59.960 the lips or that. I don't really know how to articulate, 0:24:00.200 --> 0:24:04.320 but it almost hurt, like it hurt, like it's grating, 0:24:04.359 --> 0:24:05.679 and it makes me want to go up and like 0:24:05.840 --> 0:24:08.520 yell at the person. But I know that they're not 0:24:08.560 --> 0:24:11.640 doing it spitefully and that would be stupid. But in 0:24:11.640 --> 0:24:14.760 my head, like I cannot focus on anything else. And 0:24:14.800 --> 0:24:18.520 like in lectures, for example, whispering, any sort of whispering, 0:24:18.640 --> 0:24:22.840 I just it's just normal people things. For most people, 0:24:23.000 --> 0:24:25.240 they wouldn't focus on it, But for me, my brain 0:24:25.640 --> 0:24:29.920 just zooms in on a particular sound and that's all 0:24:29.960 --> 0:24:34.399 I can hear. Internally, it's like I'm yelling and little 0:24:34.440 --> 0:24:36.280 things like there was a person sitting behind me in 0:24:36.320 --> 0:24:39.000 a lecture the other day. I could hear breathing. 0:24:41.080 --> 0:24:44.760 And while I don't consider myself a problematic breather or 0:24:44.920 --> 0:24:49.400