12 things I wish people understood about having sensory processing difficulties
This blog post could well be seen as an open letter to the world about what it is like to have sensory processing difficulties (SPD).
Life with sensory processing difficulties is one of constant tweaks and adjustments. These adjustments mean that the red lines I verbalise can look like they shift to an outsider, but the reality is that they’re always there. Sometimes they’re triggered immediately and other times it’s more of a slow burn. It’s taken me a few years to truly understand when I am in a grump simply because I’m tired or naturally irritated by life stressors, and what is me feeling overwhelmed from too much sensory stimulation, whereby, I need to step back before I either meltdown or shutdown.
As a parent of a young family, my home was louder than I wanted, with more colour clashing toys than I could look at, and furniture climbed all over in ways that I’d never thought possible. The lingering smell of toilet training, spilt milk and trodden in snacks was always a concern.
My home was draining me from the sensory feedback of smell, colour and noise by simply being in it.
Fast forward a couple of years and we have outgrown the colour clash and the noisy toys, the colours have become more muted and easier on the eye, and whilst we have our clumsy moments, the milk is less likely to have a showdown with the carpet.
Nevertheless, being told to “wait it out” till the kids are older isn’t an effective piece of advice for those of us with SPD yet who crave the beautiful home asethetic. This is why I founded Wax & Wane Interiors. My aim is to find furniture, soft furnishings and colour schemes that meet the needs of everyone in the home. To create homes that ground, regulate and restore all those who dwell within – even in the tiny human stage.
So, having said that, here are 12 things I wish more people understood about sensory processing difficulties, how I learned to recognise and cope with mine, and what you can do in your home to help with yours.
The overwhelm from sensory feedback is physical.
When you live with SPD that last straw of sudden noise, unexpected touch, or having to force eye contact can for some, cause an external reaction that comes across as rude, sullen and, at times, aggressive. Years spent being misunderstood as an angry person simply because there was just too much sensory feedback built up inside and it caused me to snap. Understanding my window of tolerance and sharing this has helped. When I worked in busy and loud open plan offices, my home was my sanctuary. A quiet retreat to reset from the noisy environment I’d spent the day in.
Creating corners of your home that are not only welcoming, but are a refuge is imperative when you live with SPD. If you live with others, creating these little nooks in areas that you can be alone in are game changing. You may need to get creative about where exactly you have them - I knew one mum who used to hide in a cupboard - but in saying that, in our new house I’ve found that one of my children has also made a cosy nest in the double wardrobe, which even I think looks inviting. So, take a tour of your home and decide where you feel most emotionally relaxed and start nest building.
2. SPD does not equate to autism, but it is highly genetic.
If there was only one thing I could shout about SPD it is that having sensory processing difficulties does automatically not mean you are autistic. It is highly correlated with autism (90-95%) and ADHD, yet the reverse does not hold true. It is more common for people to have SPD and not be formally classified as neurodivergent. Psychology Today wrote an interesting piece on this which is linked in this blog.
3. Sensory Processing Disorder is not classified by the DSM-5 as a stand-alone diagnosis. But it should be.
I will fly my flag for this. Sensory Processing Disorder has undergone so much research since it first was coined in 2006 by Dr Lucy Jane Miller. Miller spearheaded the STAR Institute in America, the world’s first research centre for SPD. There has been so much growth in this area of research, but I know that there will be so much more to come as more research is undertaken and investigated seriously. Whilst it is currently seen professionally as a sub-trait of neurodiversity and not a stand-alone diagnosis, I believe it is and should be classified as such.
4. Having SPD is different to feeling the universal human experience of sensory overloaded at the end of a busy, loud or draining day.
What takes a person without sensory difficulties a whole day to feel “too much” takes someone with sensory difficulties minutes, sometimes even seconds to blow up. If you find yourself at the end of the day – or even by the end of the week – thinking “yep, that’s enough thank you” to sensory input, then that is a normal and human experience. For those of us with SPD, we can get there in an instant. It is draining and it is exhausting.
5. Brain injuries (including blast injuries) can leave people with SPD
If SPD not equating to autism and ADHD is the first thing I want to make known, then having SPD because of a traumatic brain injury (TBI) is my second.
It is because of the effects of a TBI on a change in sensory processing abilities that we should see even more evidence for the argument that SPD is a diagnosis in and of itself and not simply seen as an automatic characteristic of neurodiversity.
BrainLine - an American National Multimedia Project who offer support for those with TBI’s and PTSD - have dedicated huge works into this area of understanding how sensory processing changes following a TBI’s and PTSD and their research is definitely worth a look into.
6. The highs from sensory seeking are very high and we can’t explain it.
I am for the most part, sensory defensive. Yet there are specific smells that I could ingest hard and deep: wood smoke, cognac, bergamot, sea salt and amber to name a few. I am drawn to warm and aromatic scents. The sensory high that these fragrances give me is one of exhilaration. Similarly, I am sensory seeking when it comes to the softness of faux fur, the roughness of jute and the proprioceptive sense of feeling my joints and deep pressure. The muscle burn in the gym and the grounding heaviness of a weighted blanket cocooned on a large bean bag ground and centre me. Including these in my home has been a wonderful addition for my senses. Think about your favourite smells and scents that are drawn from activities that you love and include these in your choice of room sprays, laundry products and cleaners. Ensure that these scents are right for all those you live with though, or you’ll be inadvertently making another family member struggle with their sense of smell whilst boosting yours.
7. It makes us inconsistent – sometimes I can touch that, an hour later, I can’t.
One of the biggest things I find makes me seem so inconsistent is the lack of a concrete yes and no to specific touch and sounds etc. One moment I can put my hands in a sink full of warm, soapy water, later that day I’m refusing to even put my finger in it – prune hands are one of my biggest sensory horrors. When playing with the kids, they know that I hate touching slime, yet can handle putty. Even specific TV shows I can have on in the morning but I am not having them on at dinner time. Cocomelon, that would be you. The sensory feedback will always grate, but being aware of my window of tolerance and where I’m currently sitting within it means that I can vary on just how much I can tolerate - or not tolerate.
8. I’m not being rude – I’m shutting down.
The pattern of sensory processing from tolerance to shutdown goes like this:
I can handle this right now – I can handle this a little bit, but not too much – I’m now feeling overwhelmed and starting to dysregulate – Now I am shutting down and withdrawing.
When we get to the shutdown stage, we have pushed past the dysregulation stage and into a state of unresponsiveness. I don’t mean to be rude, but I simply cannot respond to you, look at you or hear fully what you’re asking of me. I might hide my face in the hood of a dressing gown, become a recluse in my bedroom and not come back out for a while, or simply seem like I’ve checked out mentally.
We do all we can to avoid getting even as far as moving into the overwhelmed stage, but with daily life still needing to go on at full pace, it can be hard to avoid it.
This is why it is so important for our homes to meet our sensory needs. By understanding where you are sensory seeking and leaning into these with your soft furnishings and choices of products it allows our homes to be places that ground and regulate us, which gives us the time to balance our equilibrium, enabling us to cope better with the outside world.
9. I will avoid places and specific people depending on my window of tolerance.
There are a lot of things I enjoy doing, but not always at any given time. Depending on where I am sitting within my window of tolerance, I may feel quite willing and able to go bowling with you at 10am. If I’m rested and had a quiet night (hopefully!), I can absorb the lights, music, the noise of crashing pins and balls and the echoes of the bowling alley. Ask me again at 7.30pm after a day of childcare, kid’s crying and cleaning spilt food across the floor and it’ll be a hard no from me. However, if I do choose to go bowling on a different day, please know that I will be going straight home afterwards to sit on my bed, cradling a scolding cup of tea with an eye mask on in silence to bring myself back to a level of sensory tolerance that means I can then continue with the rest of the day.
Because of this, furnishing your own home with quiet spaces that are an escape from the outside world to recharge creates a haven. Whether you need the grounding deep pressure of a weighted blanket or a heavy, thick duvet, a hidden reading nook behind the curtains or to experience the host of tactile feedback from cool, gritty, flagstone tiles to regulate in your own home, each one can be a refuge from a world of sensory overwhelm.
Having a sensory window of tolerance is a bit like having a bank balance – you can spend it on what you like, but once it has been spent, it needs to be rebuilt before it can be used on anything else.
So please, give us sensory defensives a little patience, a quiet room and a cup of tea and we’ll re-join you in bit.
10. I’m not ungrateful – I’m just tactile defensive.
Gifts have always felt a bit of a minefield due to my sensory processing differences. There are some fabrics that I simply cannot touch and some smells I cannot smell without a gag reflex, some colour combinations that I struggle to look at, and sounds of toys (and we can circle back to the actual sound of specific fabrics stretching here too) without wanting to let out a small scream. So, when I say please do not knit using acrylic (plastic) wool, but you can use merino wool, I’m not just simply being snobby about good and cheap taste. They may look the same as a finished result to the untrained eye, but the sound and feel of the two fabrics believe me are so wildly different.
11. It’s not just the 5 senses - there are 8.
We’re all aware of the 5 senses: Taste, Smell, Touch, Sight and Sound. Sensory processing disorder shows up with all 5 of these senses, and, sometimes and quite often, it is quite easy to read and understand. Parents fully understand the concept of feeling “touched out” by their small humans and one more grab, shove or light touch is going to cause them to shout. But did you know that there are three other senses that work in the background of your sensory processing equilibrium? Two of these three are the known as the Vestibular and Proprioceptive Senses. In layman’s terms, these are responsible for your sense of balance, movement and coordination as well as muscle pressure. The final sense that is included in the 8 senses is the Interoceptive Sense. This is the recognition and understanding of your internal sensations and emotion – when you can say “I’m hungry, I’m tired, or, I’m feeling a bit anxious”.
These three senses show up in our homes in various ways, such as using the wrong amount of strength for a task such as opening or closing a door, jumping and climbing all over the sofa, and chair rocking. The Interoceptive sense shows up in subtle ways that have a strong impact on how you feel within your home, such as feeling unsettled, uncomfortable and ill at ease. Finding out more about these three senses gives you a much greater picture and perspective of what is going on within not only yourself, but those you live with who also have SPD. If you’d like to read more about these three, then why not order the “Additional Three Senses” digital download from the shop section of the Wax & Wane Interiors Website.
12. And finally… I hate the wind.
I cannot stand it pushing, pulling and blowing against me. Flicking my hair across my face and blowing my bags around me like a carousel. I’m a tactile overwhelmed mess within seconds of being outside in the wind and I am a disaster of a friend if we meet up on a windy day outdoors. I can tolerate the rain, the snow and it being too hot, just not anything over a 15mph breeze. So, like a parachuting instructor, when I say: “Sorry, we can’t today, the wind is too strong” I really mean it.
In our home, 3 out of the 5 of us have SPD.
What has surprised me over the years is that it shows up very differently despite being family, as well as it having many similarities.
When we know what the behaviours in our loved ones and ourselves are telling us, we can make the changes necessary to meet these needs and find our equilibrium staying in the centre ground. By changing and adapting my own homes interior, from quick swaps and tweaks to more substantial changes that meet my own sensory seeking and sensory avoiding needs, as well as for my family, I have been able to create a home that grounds, regulates and restores. It is this experience I want to share with you.
As this blog closes, why not sign up to the Wax & Wane Interiors’ newsletter where you can get a monthly dose of my ramblings on SPD, personal experience, updates and a few tips and tricks that I only share with my inner circle and clients.
If you feel ready to dive in, book a breakthrough call with me. As part of my services, a breakthrough call is where we empathetically discuss the behaviours in your home, find the sensory roots of these behaviours and work out products, floor plans and design styles that give the right level of sensory feedback to minimize the unwanted ones and maximize the positive ones.
Follow me on social media – Facebook Page: Waxandwaneinteriors or Instagram: @waxandwaneinteriors.
Wherever you are on your SPD journey, I’d love to have you along for the ride.
Love, Charly.