This week Peta chats with Emily from 21 and Sensory. Emily has a Sensory Processing Disorder. Emily is anonymous online but despite that, she is both educating and illustrating what it is like to live with her hidden disability.
Peta had never spoken to someone with a Sensory Processing Disorder and learnt a lot.
Hope you enjoy this episode.
If you want to know about Emily (21 and Sensory) here are her socials:
Contact Peta
Instagram @petahooke
The website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
Episode Transcript:
Peta [00:00:03] Hello and welcome to the I Can't Stand podcast, the podcast, answering your questions on what life is like when you have a disability. My name is Peta. I have cerebral palsy and like every week, I'm your host. If you have a question for a future episode of the podcast, there are three ways you can get in contact with me. One by my Instagram my handle is at @petahooke, which is spelt petahooke. You can send me an email at icantstandpodcast@gmail.com or you can go through my website, which is icantstandpodcast.com. OK. Without any further ado, I can't wait for you to meet my next guest. So I guess, could you please introduce yourself?
Emily [00:01:03] Hi, everyone. My name is Emily. I'm 27 years old and I live in the UK. I have sensory processing disorder, which I was diagnosed at age eight and I was diagnosed as dyslexic, aged 19. And also just to add another thing in there, I'm also autistic, and I was diagnosed in November 2019, aged 25. I have a first class graphic design degree, and I'm a graphic designer full time and on the side, I am an illustrator and podcaster.
Peta [00:01:42] Do you consider yourself to have a disability, Emily?
Emily [00:01:47] You sent over this question, I thought about it a lot because it's quite difficult for me because I was like so late diagnosed. So I think like for me, it's a yes and no, because I don't know. I think I didn't view myself as disabled for so long that I'm getting used to the fact that I'm that I might be and that I can use that term. That makes sense. You know, people who are autistic are disabled. And that is the term that they use. But for me, I haven't, I don't know, almost haven't had long enough to quite, you know, kind of get used to that term. So I think I definitely obviously view myself as someone who's autistic and dyslexic, but I don't know if I like in conversation, say I was disabled, I'd say I was autistic and dyslexic. And I think also because it's it's such an invisible disability, which is a term that's kind of coming into use more and more, I would probably align more with that than just the term disability.
Peta [00:02:49] In light of the fact that you're possibly not as comfortable to consider yourself as disabled or having a disability, do you view yourself as an advocate?
Emily [00:03:01] Again, it's tricky because I think people would say that I am in terms of like the stuff that I do like online and stuff, but for me, it's just kind of it sort of grew from the fact that I couldn't really see myself online in any sort of like text or anything like that or any sort of like blog posts about sensory processing stuff. So that's I almost became an advocate because I wanted to see more like content to do with like sensory processing out there. So I think I stumbled into advocacy. That makes sense.
Peta [00:03:33] Well, I mean, if you've just stumbled into it, you're doing a very good job. So what do I think you? For those of us who don't understand, can you explain what sensory processing disorder is?
Emily [00:03:48] Yeah, sure. So sensory processing disorder kind of exists when the sensory signals are either like not detected or don't get organised into appropriate responses within your brain. So I've heard it kind of described as like a neurological traffic jam that like prevents certain parts of the brain from receiving the information that it needs to interpret, like sensory information correctly. So a person with ESP can find it very difficult to process and act upon, like all the information that they receive for their senses. And this can kind of mean that, you know, kind of everyday life is quite tricky because you struggle with all these kind of sensory issues and trying to filter your senses. It's it's definitely kind of an overload of senses. It's very hard to describe to someone who's not, you know, who doesn't have these sort of issues. But sensory issues do often sort of go hand-in-hand with autism. So there is that kind of overlap, but not every autistic person struggles with sensory issues. An occupational therapist diagnosed me with sensory processing disorder when I was in primary school, so when I was eight, I think I was just really struggling in school and my parents took me to see an educational psychologist and then I was sent to an occupational therapist. And she really helped me to sort of like work like desensitising myself and also just kind of put coping mechanisms in place because school is really difficult for dealing with sensory issues because modern schools are just a sensory nightmare.
Peta [00:05:23] I was listening to another podcast that you're on a few months ago. I don't know whether this is the right analogy for the listeners who don't have a disability to try and attribute to what you're explaining to us, Emily. Like she was saying, it was like almost being overwhelmed with your senses or not being able to process them. Like when you go to a shopping centre and you pass the shop lush.
Emily [00:05:50] There's such a good way of putting it, because like I just feel like my senses are like ridiculously heightened all times. So even just like little things like walking past a shop that you know where it's like really smelly or like if you're walking past, like, I don't know, say, like a perfume counter in a shopping centre or something like that. I just like different scents and different noises are just hugely overwhelming. And I find that also, I think people don't realise that it can really like change your mood as well, because if you can't filter the information coming in, and it also means you can't regulate your own emotions. And I really struggle to, like, label my own feelings. So if someone asks me how I'm doing when I'm out and about like I couldn't put it into words. So it's it's really tricky because you can't kind of describe it well enough. And that was something that my autism assessor said that I kind of struggle with something called alexithymia, which is like, you can't like, put your feelings into words or describe how you feel. And I didn't even know that was a thing. So I think like having this diagnosis as well. You just so many things like slide into place from childhood to like, Oh, that's why I did that, or that's why I was like this. And.
Peta [00:07:05] How have you found being diagnosed at different ages like obviously got quite an early diagnosis at eight? How has the difference been, you know, for you in processing you gaining more and more diagnoses from eight to into your 20s?
Emily [00:07:22] Yeah, I think for me, it's really tricky because the two diagnosis they would have liked early on came at the age of 19 and 25. And by that point, at the age of 19, I was at university and obviously at the age of 25, I was out of education completely. So it was massively frustrating because I think I would have had so much more access to like support during education if I'd known I was autistic, just to have known a bit sooner, I think I would have been a much like less harsh on myself because I just couldn't cope and I felt like so different and really old growing up. And if I'd known that I was autistic, I could have, like at least cut myself some slack like way earlier in life. I feel like since my diagnosis, I've done that a bit more. I've just been a bit more understanding of myself as well as, you know, other people's understanding. It's like processing it for yourself as well as quite a big thing.
Peta [00:08:17] It sounds like it was quite a, you know, a positive experience for you to gain your diagnosis. Mm-Hmm. I know that's not always the case for some people. Everybody is different. Do you have any advice for somebody that's going through the diagnosis process?
Emily [00:08:35] For me, it was a positive straightaway away because my autism assessor said, Congratulations, Emily, you're you have autism, and the fact that it started that way kind of led it on to being a positive thing. So I think the first thing I would say to someone who is newly diagnosed is congratulations, like, you know this about yourself. And I think the next step, if you feel up for it is a kind of I always recommend to people that it's really important to try and immerse yourself within, like the autistic community, if you can. There's a lot of good like in-person and online support groups also as well. Obviously, the online community is really good, so I always recommend people just just have a look on Instagram, have a look on Twitter. You know, it's really it's really helpful to see other people and how they are coping. And also just to make like friends online is really good. And I think as well, I would say, like, try not to be hard on yourself and give yourself time to process it. Like, don't feel like you have to tell people right away. Obviously, it can be helpful to tell people as soon as you know, in terms of support. But I feel like the first few weeks after diagnosis, like a lot of stuff slid into place for me, like about my past. And it's nice to sort of have that time to really kind of digest it, if that makes sense. But yeah, it's really tough when you first get diagnosed because like, I remember walking out of my assessment thinking like the entire world will have changed because like, I know this about myself, the spoiler, it didn't change.
Peta [00:10:04] And how amazing was that medical professional to use the positive language, that's lovely.
Emily [00:10:11] It was so great and it it just kind of set it up for being a positive thing, and it really meant a lot that she knew how much it meant to me as well. So, yeah, I was really grateful.
Peta [00:10:23] You yourself have a podcast, your podcast host, your podcast is called 21 and Sensory, can you tell me a little bit about your podcast?
Emily [00:10:33] Sure. So it started in 2017, and initially for the first few episodes, it was like just me talking to myself about my experiences and like my own diagnosis and stuff. And then I started having like neurodivergent guests, so people who were autistic or have ADHD or Tourette's or OCD and like whole kind of range of people from different professions and walks of life.
Peta [00:11:01] Having a physical disability and not being able to pass as non-disabled, sitting in a wheelchair every day, people understand. My disability sort of inherently they get that there's something wrong with my legs. I probably can't walk and I can't get up steps at that sort of basic inaccessibility. What makes a space inaccessible to you, Emily?
Emily [00:11:28] For me, it's it is totally sensory based. So somewhere that is kind of crowded, like full of colour. So places like supermarkets, I find really difficult to find what I need because they are just packed with colour. Like the shelves, things like ambient sounds like music, background music I find really tricky and like baking checkouts and things like that. It's like all these layers of like sensory stuff to filter, I think is what I find it like. Really, like, inaccessible. I find the sound and smell are probably one of the big ones and also touch as well. If someone like brushes up against me, like all these things really change my mood and change who I am, which I really, really hate. And also like for me, I think I've mentioned it before, like if I'm in a restaurant and it's really noisy, I can't tell if I'm full because it like knocks that sense out. So it's really weird, but it's really unhelpful to me to have all these different things to process because I'll lose another sense if that makes sense.
Peta [00:12:35] It must be very frustrating.
Emily [00:12:38] Yeah, just it's it's really weird to explain that like I can't tell if I'm full because I'm in a noisy situation. It sounds ridiculous, but I know it's just all my sense is being totally muddled.
Peta [00:12:52] Marketers and advertisers have such a big challenge to make the world more accessible, at least from this century perspective. What sort of techniques other than going to a bathroom, what sort of techniques you used, you make sure that you always visit a restaurant that you've been to before that, you know, it's really quiet. Or what sort of techniques do you use to make sure that you are in the most comfortable environment possible?
Emily [00:13:21] I definitely go back to places I know, and I like to know where I'm sitting, so like I'll always book, I don't just like turn up to places. I'd hate that. And I always like to kind of face the whole room. I don't have my back to the room so I can see everything that's going on. I can see, you know, the main exit and the toilet exit. So I like to kind of set myself up if that makes sense. And I just I stick to the same foods. I'll go to the same restaurant and not try anything else on the menu. I'll just stick to the exact same sort of like meals. And I think a lot of autistic people do that. They have like the kind of safe foods, the ones that they know that they kind of gravitate towards. And it just it makes things more simple. It means you don't have to read the menu that makes sense. You already know what you want and it just simplifies everything. I'm all about making stuff as simple and as anxiety free as I like physically can. So it's all about kind of preparing stuff and having that like structure and routine in place of a massive routine person.
Peta [00:14:28] So how can the disability community and the non disabled people listening to this podcast be better allies to people like you?
Emily [00:14:38] It's important to give people with like centre issues an autism like a lot of time and space, and patients appreciate that that can be quite difficult, but it's really helpful. And I think in order to be like allies and stuff like another piece of advice I would give would be, you know, if you are out of that with someone who's autistic or has sensory issues, it's really helpful to like rephrase your questions if you can. So, for example, I think like rather than asking someone, Are you OK if they look a bit overwhelmed or zoned out, like, I'd always reply like, I'm fine, even if I'm not because I'm very good at deflecting questions. So I think it's really like worth reframing your question, such as like asking someone, Do you want to step outside for five minutes or would you like to go somewhere quieter? I think if you can reframe your questions, it's it's so helpful because it just, I don't know. It just feels like that person's more in tune with you and might gets it. You know, if we say something and we're struggling with it, you know, we're being honest. And it's really difficult, especially online with like kind of hate comments and stuff like that. Like, it's really tricky to be like an advocate online. And that's one of the reasons why I'm anonymous online is because I'm I'm not strong enough to take those comments. So just following people who are, you know, autistic or who have invisible disabilities and learning more about, you know, what life is like for them and what the world is like for them is really important.
Peta [00:16:08] So what do you love about having autism and sensory processing disorder, Emily?
Emily [00:16:15] I think with my speedy and autism have given me the ability to really get hyper focus in on creative tasks that I have to do at work, but also in my side projects too. So I find that I can quite easily lose track of time if I'm really invested in something and passionate about what I'm doing. So I think this also makes me like a really dedicated worker, and I'm also a real perfectionist, which isn't always good, as I can get a bit obsessive. But I think both of my disabilities, like, helped me creatively. I think that's important in my line of work as a graphic designer.
Peta [00:16:50] And is there anything you don't like about having a disability
Emily [00:16:54] is the stigma that comes with it or is wrongly associated with it is probably the biggest thing. There's a lot of stereotypes of autism, and things like films and TV series don't always help that, especially with autism. I've had it before where someone said that I don't look autistic. So I found that really tricky to navigate because I was just kind of shocked because I was just, I don't know, this is from a medical professional as well. It was a consultant, the hospital guy. I know also. I really expected better from you. I don't look autistic. What does autism look like then? You know, it's. I feel the need to mark my autism a lot, and I'm I'm quite like, I dunno. Careful with who I share the information with if I make sense in life just because people don't really understand. You know, it's so different with each person as well. People just don't understand that each person has different needs and different requirements. So I think that's what I don't like about having disability is the amount of explaining that comes with it.
Peta [00:18:08] So lastly, Emily, what do you hope it would be like to have a disability in the UK in the future?
Emily [00:18:15] I hope that it will be more like widely understood and acknowledged like within society, like especially like workplaces and employers, I think is a really big one to me. There needs to be this understanding and training. I think of people within companies about the accommodations that disabled people require, and I've not told anyone at my workplace that I'm autistic because I have found it really difficult because I found out three years into working there. And I feel like if my company was more open and I knew other people with disabilities at my company, I'd be more keen and upfront to like, ask for accommodations and stuff like that. So I think there's a long way to go. Also, realising that disabled people can really add a lot to like businesses and things like that, like we bring a totally fresh perspective. You know, so many people are struggling with, you know, just everyday living at the moment in the UK, and I think this is a long, long way to go. Social media, that's always been my kind of hope is that people might just take away like one thing from having it to my Instagram or something like that or listen to my podcast. So yeah, hopefully we can. We can make a little difference.
Peta [00:19:33] I'm going to link all your links in the description, but where can people find you, Emily?
Emily [00:19:38] So I'm at 21 and sensory on Instagram and Twitter. I also have a blog which has 21 and sensory WordPress dot com. And obviously my podcast as well, which you kindly mentioned, is the 21 intense rebroadcast, which is on Apple podcasts, Spotify or the open all places. I also have tech talk, but that's at 21 cents or as well if you're on TikTok.
Peta [00:20:04] Well, it's been a pleasure talking to you today, Emily. Thank you so much for being here.
Emily [00:20:08] No worries. Thank you so much for having me on.
Peta [00:20:14] Thank you for listening to my chat with Emily. All her social media in the description. And I learnt a lot. I hope you do, too. If you have a suggestion for a future guest of the podcast, please let me know. And if I could be so bold, could you please write and review the podcast on Apple Podcasts? It really helps other people find the podcast and allows me to keep doing what I'm doing until next week. Have a good one, guys by.