I was interviewed!

Hello. This is just a little blog post to say: I was interviewed on a podcast!

The lovely people from Chewigem interviewed me and the episode titled: ‘SPD and adulthood with 21andsensory’ came out today! If you have a spare moment why not check it out here:

https://chewigem.podbean.com/e/spd-and-adulthood-with-21-and-sensory-sensory-matters-31/

Also you can check out the podcast here on Apple Podcasts

I’d love to hear your feedback and any comments you have ☺️

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My fidget and stim sensory box!

Hi everyone! I thought I’d upload a video on my fidget and stim sensory box. It’s travel friendly and super useful when on the go! Feel free to subscribe to my YouTube channel: 21andsensory. All the links are below…

Thanks for watching!

Sensory Processing Disorder Research Study and Survey

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Hi everyone – this is just a little blog post to let you know about a research study that I’m (and hopeful you will be) involved in.

I’ve been speaking via email to a super lovely student from the University of KOC (Turkey) who is studying Media and Visual Arts and has participated in design research for people with ASD. Now they’ve gone further with research and to specialise in design relating to Sensory Processing Disorder. A survey link was sent through to me this week and I am trying to share it with as many people as possible in order to help with the research!

Below is a link to the survey and it would be fab if you have a spare 5 mins and can fill it  out:

http://koc.ca1.qualtrics.com/jfe/form/SV_032S5XEHYXqKXad

Thanks! Any questions, feel free to ask in the comments below or @21andsensory on Instagram and Twitter.

New Sensory Q&A ✨

If you follow me on Instagram you will have seen over the recent weeks I’ve been trying out a new feature on the platform. I’ve been giving my followers the opportunity to ask me any questions they may have and then posting my answers via my Instagram stories. I bought it would also be worthwhile posting the questions and my answers below (all anonymous). You can still access all my question and answers on my @21andsensory Instagram profile page under the ‘highlights’ section. So here are the questions I have been asked…

What sensory strategy have you found most helpful?

I reckon the best strategies I’ve found are a combination of: sensory diet (e.g body brushing, weighted blankets, fidget toys) alongside occupational therapy which I’ve found to be the most helpful form of therapy. Basically what I’m getting at is that there’s no one sensory strategy…it’s lots of different things in combination that help me to function. And I can’t always function ‘normally’ which I’m starting to understand more.

Tips for travelling with sensory issues?

Ooh okay. Good question but a bit of a difficult one as I don’t tend to travel that much! I do go on trains and drive places, etc but I haven’t been abroad in years. I would say that distraction is the key 🔑. Using things like weighted blankets and jackets, fidgets, chewing gum, listening to calming sounds or music, etc.

Also I like to travel with my own washing detergent and same sorts of smells like deodorants and perfumes so that everything feels a bit more normal and routine. It’s all about making things more easier and comfortable for yourself.

Do you have any tips for how to help someone who struggles with taste and texture of fruit and veg?

I totally understand how much of a struggle this can be, especially introducing new foods (and weird textures are the worst!) I think just trying new foods little (portion) and often (as much as you can) and just trying to get used to the food in your mouth or even just holding it in your hand is a really good step in the right direction. Equally there’s lots of food/textures I just can’t deal with so I just steer clear of them altogether – this is totally okay and acceptable too.

What would one of your top tips be for supporting someone with SPD?

That’s a very good question 🤔 I think each person with SPD is completely different so it’s key to have a quick chat or conversation with the person to check if they are sensory defensive or sensory seeking or a bit of both! Just understanding what a person can and can’t tolerate means you are taking time to make their environment and experience that much more easier to cope in and this will help them to feel more confident. Also being understanding of the fact that we may use fidgets, body bushes, sunglasses, ear defenders, etc to allow us to cope in everyday environments means you are being super supportive ☺️

I think it’s important to have an understanding of sensory meltdowns and providing a quiet safe space or zone (even if it’s a loo break) can really helps people with SPD calm themselves down to avoid a meltdown.

What advice would you give your younger self in terms of understanding your own needs?

Definitely an interesting question. I think I am struggling to understand my own needs even now 😂 but I think I would say to my younger self to hang in there and that you’ll pick up little coping mechanisms and techniques that survive everyday living. I think I’d also say that sensory processing disorder and autism will become more and more well documented and understood as the years go by – so have faith!

And what advice would you give parents? Ps thanks for everything you post, it’s so helpful and insightful!

Another super question…I know it must be so difficult being a parent because you just want to support and help your child as best you can. I know this is super hard because you are unable to sort of see and hear what goes on in our heads and to understand what it’s like to be sensory seeking or sensory defensive.

I would suggest a great thing to start is creating a sensory bin/box with sensory toys and fidgets and allow your child to stim and explore different things. For example my mum always helped me by giving me opportunities such as having a swing in the garden, allowing me to trampoline and have weighted jackets and ankle weights. Feeding that need for self regulation by building up a sensory diet with your child ☺️

I think it’s so important to remember that your child is different and not less. All of my relatives know of my ‘special quirks’ and that’s okay because that’s what makes ‘me’ me.

Ps: Thank you so so much for this comment – it really does mean the absolute world to me! My aim after starting my blog and Instagram account was: if I can help or support at least one person then I will have done my little bit in this crazy old world!

What recommendations do you have for living with dyslexia and dyscalculia? Especially with schoolwork?

Again another great question! I think concerning school work and dyslexia / dyscalculia I tried to make everything as visual as possible. Lots of drawings lots of A3 posters (which I stuck in my bedroom and around my house!) in different colour pens with drawings so the information would stick in my brain. At uni I used to record every lecture via a dictaphone or on my voice memos on my phone so that I could always go back and re-listen to what they had said. This was especially helpful when it came to essay writing!

Do you ever notice if you’re being overstimulated until later on?

I am quite sensitive to literally the world so I usually become overwhelmed sensory-wise immediately after something like a loud noise or bright colourful environment 🙄 I will either escape to a toilet or outside to just get some quiet and calm or I will bottle up how I feel and have a good cry when I get home!

How do I catch my social mistakes? Or should I ask my peers to correct me?

This is always a difficult one. I think it’s okay to ask your family / relatives to maybe comment and suggest where you might be going a little wrong. I find peers and friends can be too critical and not always understand what difficulties I actually have. Much better to ask people who really know you well. I also think ‘neurotypical’ people make social mistakes too – so dint be too hard in yourself because it’s great that you are being social and meeting up with people ☺️

So there you have it – I tried to answer as best I could and I was really surprised and impressed at the amazing range of questions I was asked! If you ever have a question for me feel free to message me on Instagram, here in my blog comments or via my email: 21andsensory@gmail.com and I’ll always try my best to get back to you!

Book Review: ‘Odd Girl Out’

 

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‘Odd Girl Out’ is a book by the lovely Laura James. Laura is an author and a journalist (and the owner of a communications agency). She is a mum of four children and lives in North Norfolk, UK. Laura tracks the year of her life in this book after receiving a diagnosis of being autistic from her doctor.

Here is a little synopsis:

What do you do when you wake up in your mid-forties and realise you’ve been living a lie your whole life? Do you tell? Or do you keep it to yourself?

Laura James found out that she was autistic as an adult. Odd Girl Out tracks the year of Laura’s life after she receives a definitive diagnosis from her doctor, as she learns that ‘different’ doesn’t need to mean ‘less’ and how there is a place for all of us, and it’s never too late to find it.

Laura draws on her professional and personal experiences and reflects on her life in the light of her diagnosis, which for her explains some of her differences; why, as a child, she felt happier spinning in circles than standing still and why she has always found it difficult to work in places with a lot of ambient noise.

Although this is a personal story, the book has a wider focus too, exploring reasons for the lower rate of diagnosed autism in women and a wide range of topics including eating disorders and autism, marriage and motherhood.

This memoir gives a timely account from a woman negotiating the autistic spectrum, from a poignant and personal perspective.

Quote from amazon.co.uk

My review:

This book is phenomenal and these are the main reasons why:

  1. Whilst reading it I’ve never felt SO understood.
  2. Laura is very open and forthcoming about her struggles. This is so refreshing.

The book covers Laura’s autism assessment and diagnosis, childhood, teen years and adulthood so far. It’s fascinating to read how Laura was assessed/diagnosed aged 45 and how she has built up so many different coping mechanisms in order to function in a neurotypical world.

Laura’s book also goes into detail about things like relationship struggles and her special interests. This was particularly interesting to read about and it really emphasised how important special interests are to autistic people, and reinforces the point that they should never be denied or taken away from someone.

‘All my life I had tried so hard to be neurotypical, but in that one moment it became utterly clear that I was never going to fit that mould.’ Laura James, The Guardian.

Laura writes about all the daily and mundane things that for some can be such a struggle. Like working in an open plan office. Neurotypical people can deal with this environment okay and sometimes even enjoy being able to talk to people freely around them. For Laura (and me!) it’s nothing short of a bloody nightmare. The sound levels change so frequently that it can be quiet one moment and so loud the next that you can’t think or function properly. Bright strobe office lights can be distracting and too much to bear (and if you haven’t already why not read about my fluorescent jacket troubles in my own office here!). Not to mention the varying smells, people touching you from behind to grab your attention, etc. New experiences really are so overwhelming. This book really will open your eyes to the world around you and make you think twice when you are in these sorts of environments.

The depictions of autism that are mainstream tend to be from things such as: RainmanThe Curious Incident and the Netflix series Atypical. This is all well and good but these films and shows sum up autism to generally be a very male condition when really it’s not at all. Female autism is less documented and understood and I feel that Laura touches on this: a lot of female autistics mimic others around them in things like social situations and are able to get by copying and learning from others behaviours. I think this is why a lot of girls are going undiagnosed for so long. Because we are able to just about manage and put on an act/mimic others to get by okay in life.

A lot of girls are told they ‘don’t seem autistic’. I think this is because we are able to cope on the surface of things and learn behaviours such as keeping good eye contact in order to fit in. It’s all about being able ‘pass’ socially in order to stay under the radar and seem ‘normal’. That’s pretty awful don’t you think? I constantly have to push myself into new situations that I don’t want to do and can’t cope with just to seem like I am normal. Then I can have meltdowns before and after these because it requires so much of my energy and is so hard sensory-wise.

It’s obviously slightly tricky to write a book review as I don’t want to giveaway large sections of what happens because people might want to read it!

I do just want to mention a couple of things. This book was a bit hard to read. I don’t mean this in a bad way at all – it was always going to be difficult to read a book on someone else’s life especially if they struggle with the same things as me (or you). I found that a lot of the autism and sensory parts of the book made me upset / triggered bad thoughts and feelings. This did not put me off and should not put you off either. I think I just resonated with a few of Laura’s struggles so much that I couldn’t help but feel upset but also relieved all at the same time. And yes, I cried through parts of this book. I’ve only admitted that to be honest, because so many things Laura mentioned echoed my own struggles.

The one other thing to mention is that the book can be slightly hard to follow at certain points as Laura jumps back and forth from her childhood memories/life to the present day but this might just be a dyslexic thing I struggle to keep track of!

I’m going to admit to something that you’ve probably already guessed by reading my blog. I have always been the Odd Girl Out. Throughout my life I have constantly struggled with the seemingly normal and mundane things through childhood to my current early adulthood. I hate all the things that neurotypical and young adults seem to love doing like: going to loud places, loud music, meeting up with friends, going to new places, parties in general, restaurants, going on holiday, buying new clothes, drinking alcohol, going to super bright or colourful environments, trying new food, travelling…look the list is actually never-ending. The point I’m getting at is…this book made me feel less alone. I know that sentence is a little bit sad, but it’s true. Because having these struggles all the time is very (very) tiring and nobody else truly seems to understand me (apart from my mum!) or what really goes on in my head. This book gives me just a bit of hope for the future.

I have passed this book onto my mum who is currently reading it. I really think the book gives such an insight into what goes in Laura’s mind and highlights what other autistic people struggle with everyday.

So how would I sum this book up?

Laura learns that ‘different’ doesn’t need to mean ‘less’ and how there is a place for all of us, and it’s never too late to find it.

Conclusion: If you can, you have to read this book (no matter who you are!)

Read an extract of the book here

Read an article Laura wrote for The Guardian (UK) here

Buy the book here: UK / US / Rest of the world

A little (but important) Q&A

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Since my last post I have had a couple of questions in my blog comments which I thought I would answer in a blog post:

Are you autistic, I thought you had SPD?

Okay so here’s the thing. I was diagnosed with Sensory Processing Disorder (SPD) aged 8.

Over the years I think I have slowly come to the realisation that I might be autistic as I have a lot of little traits and sort of signs that point towards it. Many autistic people struggle with sensory issues but I’d never really thought about it the other way round – what if people (like me) with sensory issues actually sit somewhere on the autistic spectrum…?

Here are some traits that I or others have noticed in myself:

  • I have a very literal understanding of language and find jokes and sarcasm hard to understand.
  • The world can seem a very unpredictable and confusing place and I prefer to have a daily routine so I know what to expect each day. I hate change / new things and always react badly to them. I can cope better if I can prepare for changes in advance. For example: I would happily eat the same things everyday if I could and I always found it difficult to move from one school to another and onto university.
  • I find holidays or anytime off work very difficult and upsetting. I have to make routines and to-do lists to form a sort of schedule to live from.
  • I experience over sensitivity to sounds, touch, tastes, smells, light, colours, temperatures and pain. This is referred to as sensory sensitivity.
  • I am often unable to understand and express my own needs and become upset and overwhelmed very easily.
  • Autistic people often have repetitive and restricted interests. I find I am specifically drawn to (and love) police/crime/medical documentaries and TV shows (I even did my uni dissertation on UK policing!).
  • I seek out time alone when overloaded by other people. I find social situations an absolute nightmare. I try desperately to fit in and have a ‘fight or flight’ reaction to them.

(This list goes on and I have left off some more private/personal problems I struggle with that I am not comfortable listing on the internet!)

I have recently seen a psychologist who believes I am autistic and that I do have autistic traits. She feels I would sit somewhere on the autistic spectrum and encouraged me to go forward for a formal diagnosis. I have recently been contemplating whether it would be beneficial or not for me to be assessed but as the NHS waiting list is months long I would have to pay privately for this.

There are a lot of self-diagnosed autistic people out there. And I think for the time being I might be one of them. Autism really sums up my difficulties well into one easy to say ‘label’. I realise this may sound bad, but I don’t want it to come across that way.  Saying ‘I am autistic’ really helps me to explain my difficulties to other people quickly without explaining all my sensory and daily living problems.

Hi. Do you think you could do a post on occupational therapy? 🙂

Of course! Sorry if it seems like I’m rambling:

I’ve tried lots of different therapies such as Cognitive Behavioural Therapy (CBT) and therapy sessions with CAMHS (child and adolescent mental health service, NHS, UK) however I found these unhelpful and these made me feel worse. I have found Occupational Therapy (OT) to be the most helpful form of therapy.

The main problem I find is that UK doctors are not very clued up when it comes to sensory problems. This is a real shame – although some doctors are fab. I was referred to an Occupational Therapist as a child which was when I was diagnosed as having SPD. OT referrals are only offered to babies and young children in the UK and the service seems to stop as soon as you get any older. Once you are a teen/young adult/adult you only seem to be offered talking therapies like CBT.

I have seen an OT privately before (although this can be expensive it was definitely beneficial). The main thing my Occupational Therapist taught me when I was a child were fine motor skills like being able to cut with scissors, grip a pen/pencil, etc.

However the main thing OT’s focus on is this: de-sensitisation. It’s all about slowly learning to de-sensitise yourself to sensations you find hard – like touch. I was taught about body brushing. I totally recommend looking up something called the Wilbarger Protocol (a form of Brushing Therapy) you can read about it here. It’s a brushing therapy that helps people desensitise their body (that you can do at home) – also the brush can be bought online through Amazon and isn’t expensive! You should ideally do this under the supervision of an OT to make sure you are using the right technique but these instructions are helpful if you want to try it out for yourself.

I used to find it incredibly difficult to brush my hair and teeth. Although I still absolutely hate brushing my teeth I am able to withstand the vibrating motion of an electric toothbrush in my hand which is great as I now my brush my teeth much better even if the sensation is still quite tricky. I am also able to brush my hair – I apply a firm/heavy amount of pressure which really helps me.

Also I totally recommend reading the book ‘Too Loud Too Bright Too Fast Too Tight’ by Sharon Heller

I recommend also looking up Sensory diets (and weighted blankets!) and reading my posts here about how these have helped me:

Do feel free to continue to ask questions in the comments of my blog and I will always try to answer them as best as I can. 

‘Some autistic feels’

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So I received this super awesome ‘lil zine in the post from the super lovely Megan Rhiannon’s Etsy shop this week! It’s intricate illustrations are beautiful and give a little insight into ‘Some autistic feels’. Have a little click through the slideshow of images above which give a little sneak peek of some of the pages!

Follow Megan here: Twitter | Instagram | YouTube | Etsy UK Shop

Some of my own autistic feels:

  • Living in big comfy baggy jumpers and skinny jeans all day everyday. I would dress in grey and black 24/7 if I could!
  • Hot drinks: specifically tea which is my go to hot drink…(with plain digestive biscuits!)
  • My weighted blanket: I use it every night without fail and during the day if I feel stressed out or anxious (it’s from Sensory Direct)
  • My phone: I listen to lots of podcasts and audiobooks to keep me distracted and to learn on the go about new things. (I might do a little blog post listing all the podcasts I love) I also love taking photos and videos of quirky things.
  • My wave projector: I use this most nights, it replicates sea waves moving and it’s super calming to watch 😍
  • My Sensory DIY Box: my go-to when I need to fidget or calm down sensory-wise. Currently loving my little fidget cube and tangle!

So there are some of my own autistic feels – let me know what little things you use everyday to self-soothe or distract yourself in the comments below…