Matt George (00:00):
Today's episode of the Sensory Friendly Solutions Podcast on the Unsettled Media Podcast Network is brought to you by Sensory Friendly Solutions. Discover sensory friendly solutions for daily life. To learn more, head to sensoryfriendly.net.
Matt George (00:23):
Unsettled. Hello, listeners. Welcome to episode seven of the Sensory Friendly Solutions Podcast. Today, we're speaking with Stella Waterhouse. Stella is an autism expert and educator, and she's also the producer of autismdecoded.com, which you will hear more about in the innovation segment and some of the other things that Stella is working on. As a second-generation educator and autism awareness expert, Stella shares her personal and professional experience and understanding of the autism spectrum and the many challenges that people with autism and their families face in their daily lives. Her goal is to develop resources that will offer practical advice, solutions-oriented insights, and solutions to parents and teachers so that the child's life is enriched and supported and family life is enhanced. You'll hear more about all of this work and autismdecoded.com in this episode of the Sensory Friendly Solutions Podcast.
Matt George (01:36):
Hello, listeners. Welcome back to episode seven of the Sensory Friendly Solutions Podcast. On the other side of the microphone today is Stella Waterhouse. Stella, how are you?
Stella Waterhouse (01:49):
I'm fine, thank you.
Matt George (01:52):
Before we spoke on the podcast, before we started recording, you mentioned you were in the UK and you mentioned there are impending lockdowns. Is that right?
Stella Waterhouse (02:00):
Yes. For a month, I think, in England. So it's starting later this week and going on till about the 3rd of December.
Matt George (02:10):
Well, we're with you in spirit from the East Coast of Canada. We seem to be fairing pretty well at this point, but I know we all have to be in this together. So thank you for being here and thank you for spending your time, even though it's maybe a bit of a unique time in the sense of things, isn't it?
Stella Waterhouse (02:30):
Oh, very much so, yes.
Matt George (02:31):
Stella, can you introduce yourself for our listeners at home who may not be familiar with the work you're doing right now? And then after that, I'd love to dig into some of your background, some of you got to where you are now. So if you could introduce yourself, that'd be great.
Stella Waterhouse (02:45):
Yeah, certainly. I work mainly with people with autism and I write books on the topic. And for the last four or five years, I've been developing a sensory friendly travel website, which actually started off as a hobby. So it's at the slightly more extreme end of the sensory differences, really, the people that I've tended to work with.
Matt George (03:22):
And I really want to dig into that and I have some great links here that we're going to include in our show notes and talk about starting with autismdecoded.com. But before we do that, let's dig a little bit into your background. How did you come to this work? Let's talk a little bit about your career arc.
Stella Waterhouse (03:40):
I think everything's sort of happened by chance. In the late 1960s, I met three children, all of whom were very different and all of whom had the same diagnosis. I was working in the Camphill School at the time with actually looking after staff children. But these three particular children intrigued me and I just couldn't work out how they could all have the same condition when they were all so totally different. And it sort of led me onwards.
Stella Waterhouse (04:21):
So one thing led to another and I actually went into initially to teaching children with autism and other disabilities. But then I moved on to the care side and yeah, gradually worked my way up. I became a deputy principal of a residentials home for adults with autism in the eighties. And after that, I decided I would like to write a little booklet about anxiety because it seemed to be a very major factor and none of the textbooks at the time that I'd come across, anyway, seemed to mention it at all. So I started to write that and it grew rather large, mainly because it's all very well to say every person with autism is anxious or very anxious, but then, of course, you have to ask the question why. And that sort of led me on. And I wrote my first book in, or it was published in 1990. I then updated it in the year 2000 and actually got a publisher for that one. And in 2010, I decided it needed revamping and it grew rather large. So it's turned into a four-part series this time.
Matt George (05:59):
There's going to be a question towards the end of the podcast that, really, we'll ask you to consider the iterations of that writing. And I'm really interested to see what you see in the current time, because I know that I'm seeing a lot of anxiety and stress within my peer group. But let's pick that apart piece by piece. We've had some fascinating guests on this podcast. And one of the things that I'm learning throughout the course of the podcast is the experiences of either growing up, experiencing autism firsthand, or being an educator in this space. We interviewed the writer behind The Out-Of-Sync-Child, Carol Kranowitz, who came to her writing in a similar way to yourself. You mentioned those three kids, and you mentioned that they each had the same diagnosis, but there was a spectrum of lived experience. Can you talk about that a little bit?
Stella Waterhouse (06:53):
Oh yes. One of them was the most beautiful little girl, a sort of mini Mona Lisa. Totally silent. Seemed to be in her own world all the time. But a really lovely child. Another was a young boy who, well, he was probably going on for, heading for about 12. And he used to eat anything and everything, regardless of how hot or cold it was and whether it was actually edible or not. And the third one was another really lovely girl who used to just up and run at the drop of a hat. And she'd be found wandering a couple of miles away, not having gone anywhere specific. She'd just run. So all those things intrigued me. And for a long time, because I was working in a Camphill School, I sort of picked up on their theory that, well, those children followed the beat of a different drummer. And then I realized how totally wrong I was. The more I delved into it, the more I came to understand why they acted as they did. And yeah, that's what spurred me on when I started writing, really.
Matt George (08:27):
When you started writing, I'm curious, was it an inspiration to dig deeper into the experience that these children were living, or was it just a pure fascination with that side of their lives?
Stella Waterhouse (08:41):
It was actually, I wanted to delve deeper and I started reading the literature at the time and I was trying to read the things that they had written. And there was probably only about two books at the time. One, a book of poems, and another one by Temple Grandin. So I started talking to parents and I read any research papers that sort of actually spoke about how the person felt that they were studying. And I learned a lot about myself along the way as well, which was also fascinating. Because although I don't have autism, I did have sensory differences which impinged on my life quite a lot, although not in the same way as a person with autism would experience that. For me, it was more that the results were physical.
Stella Waterhouse (09:48):
So I had visual differences, which meant my eyes didn't focus together. So I suffered from migraines quite frequently, especially if I went anywhere with bright lights, that sort of thing. And also I had hyperacusis. So I was very sensitive to specific noises, which sounded a lot louder than they actually were and were really infuriating. And once I'd started delving into it a bit more, I found that kids and adults with autism had those problems but at a much more extreme level.
Stella Waterhouse (10:33):
And it was fascinating because I also came across a couple of therapies. One was an auditory treatment which was done and it came to attention of the public because the girl's mother wrote a book about it sort of when her daughter had reached about 21. And it was auditory integration training, which you may have come across or not. But it was done by a French ENT specialist, and it actually helped the girl tremendously. So I actually went and tried that on myself and found that it worked and I no longer had hyperacusis, which was absolutely brilliant because it meant I didn't have to sit through concerts with my finger in my ear and that sort of thing.
Matt George (11:35):
And I see on your website as well, at autismdecoded.com, you do have some videos on hyperacusis.
Stella Waterhouse (11:41):
Yeah, yeah. And the other thing was, later on, I came across Donna Williams, an Australian lady who's now suddenly died. She died a couple of years ago. But she wrote a lot of books about autism because she had autism herself. So she had very much an insider's view of it. And yeah, she taught me a tremendous amount, really. I'm still learning, of course, but I think that's the way it goes.
Matt George (12:15):
Of course. And it seems to be a really evolving field. And we love speaking with folks who have been around the sector for quite some time because you get to see the evolution of it. And also people like you and people like Carol Stock Kranowitz who have written on the subject to fill a void that they saw. So if I'm understanding correctly, you saw that there was a lack of resources, a lack of writing on these kinds of experiences, and you were learning for yourself but also to fill a void in the market.
Stella Waterhouse (12:50):
Yes. Yeah.
Matt George (12:51):
When you wrote it, did parents respond in a similar way? We heard a lot from Carol in the sense that parents were saying, "Wow, I'm finally beginning to walk the road of not only understanding my child but..." as you mentioned, "... understanding myself." I have to imagine there was a pretty serious impact on families.
Stella Waterhouse (13:11):
Yes. Yeah. There certainly is. Because I think, a lot of people, even now, I'm on several Facebook groups, and time and again, I see parents saying, "Why does my child cover their ears when such and such happens?" Which I find it really sad that the major autism organizations aren't explaining that when the child is diagnosed. Because then the parents can actually do something to help them. But all too often, they're left to find out the answers for themselves. And there's so much information out there now that that's actually quite difficult for people to know what is genuine information and what is misinformation, really.
Matt George (14:08):
Of course. And in this moment, one of the stats that we always bring up throughout the course of these podcasts, and it speaks to our current moment, as of June 2020 the word sensory overload was being searched over 40,000 times a month on Google. And that might not seem like a lot as a raw number, but the trend increase given from last year, 2019, is 50%. Have you seen this reflected when you're, I know you're in the field, you're in these Facebook groups, you mentioned your own personal experiences of sensory overload and we'll get into that, but have you seen this increase? What are we dealing with right now as a society, as it pertains to sensory overload?
Stella Waterhouse (14:56):
I think everybody at the moment is more anxious because of COVID. And I think that does have a knock-on effect on your sensitivity. As you get more anxious, people seem to become more hypersensitive to everything that's going on around them and perhaps more irritated by noise than they would normally be if they hadn't got that added stress. I think some of the reactions that you see with people going and bulk buying are probably anxiety-driven that they're going to run out of whatever it is, when that actually probably isn't true at all. But anxiety has all sorts of weird effects on humans, doesn't it?
Matt George (15:55):
Yeah. Yeah. Certainly, it's been a really interesting time to take on this project because we're speaking with folks from all over the world and their experience at the moment has been totally different in some cases. And it's really interesting to think that, you know what? We're in this together. The whole world is dealing with this right now and we're dealing with it in different ways. And one of the things that I think we're experiencing, we've heard from guests that they are, and their families are, is just a sheer information overload. There's just so much noise out there. You alluded to that a few minutes ago.
Stella Waterhouse (16:31):
Very much so. Yes. And I think, unfortunately, an awful lot of people feel that they have to listen, almost, to the news and keep up with every little thing. But I think that's actually has a really depressing effect on a lot of people. I know people who are really, really anxious and yet you wouldn't have particularly thought they would be that anxious because there doesn't seem anything specific for them to be anxious about.
Stella Waterhouse (17:11):
Where I live, I'm actually out in the country, so you can go for a walk with the dog and hardly see anybody at all. So the level of fear, you would think, should be lower. And it certainly is for some people. But for other people it's as high as it is for people in towns. And that seems quite strange. But part of it seems to be because they do feel obliged, almost, to listen to everything that's hitting the news and keep up with all the latest. I know somebody was telling me that they'd had a reasonably good day and then they listened to the news before they went to bed, and she said she had a really bad night because the news had been very depressing. But it's hardly surprising.
Matt George (18:05):
Yeah. It strikes me that that's probably not a good bedtime ritual.
Stella Waterhouse (18:10):
Oh no.
Matt George (18:11):
Stella, what was the inspiration for autismdecoded.com? I know we're not together in person right now for obvious reasons, but you have taken your work online. I'm seeing some great stuff at autismdecoded.com. What was the inspiration for the platform?
Stella Waterhouse (18:29):
It's actually the name of the series that I'm writing. So it seemed a sensible thing to do, but as the sensory differences actually affect a wide range of people, it's probably too autism-specific, if you like. I have been toying with the idea of changing it. But it is trying to get people to understand it's not just having sensory differences that matters. It's the actual effects they can have on you. If you can't see properly, or you're always anxious that a noise is going to happen that will be a bit like fingernails scraping down a blackboard, gives you that sort of feeling, then you are anxious all the time. And it's trying to get across to people the effects, but also the fact that there are things you can do to help. I noticed-
Matt George (19:37):
Certainly.
Stella Waterhouse (19:39):
Sorry.
Matt George (19:40):
No, certainly. That's a great way to put it. And I've even seen that within myself when I reflect on what you're saying. A hypersensitivity to the moment, maybe brought on by not only the pandemic but also too much information, the small things in life start to seem a little bit bigger. Your overall coping strategies are much more difficult.
Stella Waterhouse (20:02):
Yes. Yeah.
Matt George (20:06):
When we look at some of your other innovations, and we do a fun innovation segment at the end of each of these episodes, Stella, where we hope to give people the tools and the tactics and the tips and the strategies to better navigate the moment, because it's a weird moment for us all. You mentioned an interesting project. Am I saying this right? Koloko Travel?
Stella Waterhouse (20:28):
Yes. Yeah.
Matt George (20:31):
Can you talk a little bit about that?
Stella Waterhouse (20:33):
It really grew out of the fact that about four or five years ago, there didn't seem to be very many resources at all for in terms of where parents could go with their children on holiday and actually enjoy a stress-free holiday. It's always difficult, particularly for families of kids who've got autism, because the kids don't necessarily find it very easy to cope with either the traveling or going to new places. So that's a major hurdle in itself. But there were so few places out there, I initially wanted to set up a place. And then I thought, "Well, that's really silly idea because I haven't got the resources to do that, but it would be much better, in fact, to make a directory of all the places that were suitable, or halfway suitable at least if they weren't actually autism-friendly."
Stella Waterhouse (21:36):
So I sort of started doing it as a hobby and just collecting a list of places. And then a couple of years ago, I decided it needed to be a proper professional thing, really. So we've been working on that. I've got a couple of other people involved, one of whom is a sensory-friendly travel agent who has a daughter with autism. So he's very up on all the things that parents are actually looking for when they go on holidays. And the other person involved is Chris Richards, who runs the charity up in Leicester. And he's been a tremendous help in getting the whole thing off the ground and starting to make it professional. We've had quite a few hiccups because, especially at the moment, nobody really wants to fund that sort of thing or help fund it. We are a community interest project anyway. So if there are any profits, then a large proportion will go back into autism or sensory-related things.
Matt George (22:54):
I love what we've seen the trend of, for example, us talking about the trend in Google search and sensory overload. A lot of those trends that are manifesting socially are also coming to fruition in the way of Koloko Travel in the sense that whether it's a clearing house or an actual company, there's now doctors, dentists, travel agents, everyone considering the diversity of sensory experiences in our daily lives. And I think that's wonderful.
Stella Waterhouse (23:23):
Yes, definitely. And it's something, we've got sort of a threefold approach, if you like. One part will be a directory so that parents can go and browse it and look for holidays with their children and hopefully find something and book direct. The other part is run by Nick, who is the travel agent. And he will tailor-make holidays for people. And the third bit is actually for kids and teens, so that they can go and explore the world before they actually even get to the stage of traveling. So that's got a huge range of, or will have, a huge range of resources on there so that they can go travel the world, see what it's like to go on a train or an airplane. See all sorts of things, really. Also explore the different things that you can do on a holiday, perhaps.
Matt George (24:40):
I think that's a wonderful idea. Do you see that almost as preparedness, or more of an educational tool?
Stella Waterhouse (24:47):
Oh no. It's not intended to be educational. It is intended simply to get them interested in the idea of traveling.
Matt George (24:58):
That's wonderful.
Stella Waterhouse (24:59):
There are actually quite a few kids who I've come across who like learning languages, or like watching videos and things in different languages, which is quite an interesting one. Particularly kids, seems to be, who don't really converse that much, but they still like to watch things in Japanese or whatever the language might happen to be. Spanish is another very popular one. So it's including things like that as well, so that they can go on that particular website and search out a whole range of different things to try out.
Matt George (25:43):
That's fascinating, Stella. Do you want to point our listeners to where they can go and experience that?
Stella Waterhouse (25:49):
Yeah. It's actually called the oasiscafe.co.uk. And the other- Sorry. Go on.
Matt George (26:01):
No, that's really excellent. I'm looking right now. And I'm just thinking what an innovative idea. And when you think about the diversity of experience, for example, perhaps not communicating but wanting to listen to a video in Japanese or to Spanish, that's such an interesting thing to have available and to have a clearing house like this. And we're going to include a link in our show notes, is an excellent idea.
Stella Waterhouse (26:24):
Thank you very much. It's something we're still working on. We had a little bit of a disaster with the website earlier in the year in that we tried dividing it up into the three sections and we lost a lot of information. So I'm still trolling through it and putting bits back together again. Because the other thing that we've gone for, really, is also trying to do virtual reality tours of places so that you can actually go to a hotel and see what it's like, see what the bathroom's like, what the bedrooms are like, the gardens, that sort of thing, just to reassure people. And hopefully that will get them interested and enable them to start thinking that holidays can possibly be something that is exciting and nice to do, fun to do.
Matt George (27:25):
Yes. Yes, indeed. Stella, we always wrap up with this question because we are called the Sensory Friendly Solutions Podcast. You mentioned your personal experiences with sensory overload. What are your strategies to reduce the noise of the current era? What do you do day-to-day that our listeners could benefit from that have helped you better navigate the current moment we're in?
Stella Waterhouse (27:54):
I'm in a different position to a lot of people because I'm actually technically retired. So I work from home and I live in the country. So both of those things are really helpful. And that's not something that everybody has access to. But I think there are a whole range of resources out there now. There's a lot of mental health resources and that sort of thing. And maybe somebody needs to put them into a directory so that people know where to go, because an awful lot of people are falling into depression and that sort of thing. It's not just people who've already got sensory issues. It's quite a few people in the general population seem to be so badly affected by it. And they don't necessarily have the ability to get up and go out of their house for a walk.
Stella Waterhouse (28:59):
I think that was one of the problems over here with the first lockdown that some of the parks were shut. And I know in the autism community that there was almost a divide. Some children really benefited from not going to school and staying at home and doing homeschooling, and others found it tremendously difficult because they'd lost the routine. And yeah, it's something I think we're going to have to navigate our way through again. But hopefully the lockdown, certainly over here, is going to be more short-lived this time. So that should help. But it is very difficult. And once you've been in the lockdown, it's also difficult to come out of it for some people. Either because they're very afraid still, or, going back to people with really serious sensory differences, because they have to almost relearn what you do when you go out. And I don't know that there's an easy way around any of those things.
Matt George (30:19):
Yeah. Certainly. Stella, we're with you from the East Coast of Canada. We hope, as you say, that the lockdown is short-lived. You've been extremely generous with your time today. And I really thank you for being a part of the Sensory Friendly Solutions Podcast. And we're going to happily point our listeners to autismdecoded.com and they can start to interface with your work.
Stella Waterhouse (30:42):
Thank you very much, indeed, Matt. And thank you for having me.
Matt George (30:46):
Absolutely, Stella. Be well, be safe. We'll see you very soon.
Stella Waterhouse (30:51):
Right here. You take care too.
Matt George (30:53):
Bye-bye. Thank you.
Stella Waterhouse (30:54):
Bye.
Christel Seeberger (31:01):
Hello. It's Christel Seeberger, occupational therapist and founder of Sensory Friendly Solutions and person with hearing loss. My reflections today are going to be a little bit different. Matt isn't joining me. So I'll be recording my thoughts in a bit of a monologue.
Christel Seeberger (31:22):
It was fascinating to hear from Stella Waterhouse. She is our first guest from the UK. We've heard from people and thought leaders in the sensory space across Canada and the United States so far. It was nice to get a different and deep perspective. Stella took us back in time to her practice in the 1960s, where she was helping three different children who, although diverse, shared a similar diagnosis of autism. And that set Stella on a path to become the prolific writer that she is today. She first searched for books in the 1960s written by autistic individuals. She wanted to read about people sharing their personal stories. And she found only two. It seems unbelievable in today's world that there were only two first person accounts. We are so accustomed to people sharing their stories daily. Each one of our guests, in fact, have shared personal examples of a sensory experiences in their own lives. Matt, I think it was, used the words, the spectrum of lived experience.
Christel Seeberger (32:57):
I really liked that Stella said despite retirement and living a wonderful life in the English countryside, that she is still learning. I also appreciated Stella sharing her perspective that things still need to be explained. We often take for granted that other people know what we know. There is so much information out there that it's difficult to navigate. It is difficult to find what you're looking for sometimes. We've recently had podcast listeners write in to say that they like our innovation segment, for example, because it really helps them cut through the noise of information about sensory challenges and sensory friendly solutions that's out there. Stella really reminded us that sensory differences affect a wide range of people, even though her interest was sparked by working with children with autism and then understanding of her own sensory difficulties.
Christel Seeberger (34:14):
Stella, in retirement, has embarked on developing a sensory friendly solution. It's one that really gives me hope for a better future. Koloko Travel. Right now, while the world copes with COVID-19, when we turn to recovery, we need solutions that are going to help us return to living. And I really see Koloko Travel as one of those solutions, making local, regional, domestic, and one day a return to international travel, easier. So with three episodes to go for season one, our upcoming guests have incredible insights to share about sensory friendly solutions for daily living. Join us again next week.
Matt George (35:16):
Hello, listeners. Welcome back to the innovation segment. We really hope you've been learning from these segments. We want to give you practical advice, tools, tactics, tips, strategies, resources. And for episode seven, it's no different. We want to point you first to autismdecoded.com. You'll learn about the autism spectrum from Stella, sensory differences, potential problems. There are free downloads. There are products on the website. There are links to other products and groups.
Matt George (35:56):
One of the great parts of the website says, "Want to help your children thrive? Or just learn more about autism and Asperger's syndrome? You've come to the right place." And there are many videos on the homepage, like the autism basics, what the experts might not tell you, managing stress, things like migraines and headaches. We also want to point you to a new initiative from Stella called Koloko Travel. This is sustainable and ethical travel solutions. If you are a travel professional, head to Kolokotravel.com, you'll also find that in our show notes, to find out how they can help bring sustainable and ethical travel solutions. We love talking about innovation, just like this.
Matt George (36:54):
We also want to point you to the Oasis Cafe. You can find it at oasiscafe.co.uk. What can you do when you get to the Oasis Cafe? Well, as it says on the website, "While you are here, you can have a drink, relax and chill out, have fun exploring the world. Click on the destinations at the top bar of that website for more information. You can find out more about things like surfing, riding, many other sports, by clicking on the Oasis Cafe menu in red at the top of the page. Check out places like an aquarium, a zoo, museum, or art gallery. You can browse one of the gardens, or take a virtual tour of a National Park."
Matt George (37:43):
The tagline at the bottom is really interesting. "Want to explore the world or learn about surfing, climbing and many other sports or take a virtual tour and much more, click the pictures below." And you'll see on the bottom row, the explore the world tab, taste the world of food tour, learn a new language. A really interesting insight into innovation in the sensory friendly space. This also comes from Stella Waterhouse and team. Thank you for being with us for episode seven of the Sensory Friendly Solutions Podcast.
Matt George (38:29):
Thank you to our sponsor, TakingItGlobal, ensuring that youth around the world are actively engaged and connected in shaping a more inclusive, peaceful, and sustainable world. As part of their RisingYouth initiative, they're looking for young people who are inspired with ideas and ready to take action through youth-led community service grants. Head to risingyouth.ca to learn more and to become the next RisingYouth grant recipient.
Matt George (38:57):
The podcast is also supported by New Brunswick Community College as part of the Community Resource Awareness During and After COVID-19 applied research project, funded by the New Brunswick Innovation Foundation. Learn more about NBCC's efforts to transform lives and communities at nbcc.ca. The Sensory Friendly Solutions Podcast is produced by me, Matt George, is engineered by the great Zachary Pelletier. It is part of the Unsettled Media Podcast Network.