Seeking Guidance?

If you want to skip to the bit that is just about sensory sensitivities that any of you (who are like me) may not be able to get past, here is the invite to skip to paragraph four (including this one). If you are happy to read about the reality for some that some sensitivities are ‘workable on’ as well as there being those that are less so, the two paragraphs (after this one) might be fine. You choose. You’re the reader, after all. 🤷🏻‍♀️

I am an advocate of (where possible) actively attempting to desensitise myself (and advising others to do similarly) to the kinds of things in life that are (to be frank – except I’m not Frank) unavoidable. As one example from a list of many I could have chosen, I am seriously sensitive to sirens. When in London (where I will continue to go because my son is often there and there are reasons I need to be there) I WILL encounter them. Some will be very nearby me as they pass, and they might even blare into life as the emergency vehicle is in close proximity to me. Yes, having earphones or earplugs in can partially help but it doesn’t remove this trigger or the internal (or external) responses to it. So, my choice becomes to either allow the exposure (or partial exposure if it’s an earphones in day) to the sirens (and afterwards deal with the fallout) in an attempt at some level of desensitisation (however small), or I choose to never go to London (or any other big town) where sirens are likely to be. For me, to choose to avoid any big towns for the rest of my life would be giving my sensitives additional power over me and of allowing them to limit my life experiences. I must not let that happen, even if on many occasions, it would be simpler to do so.

The world will never change (concerning sirens) or adjust to having times when sirens are not used because (as we are all aware) they are necessary for other reasons (and these reasons are potentially a matter of life and death). My sensitivities (whilst being, in various measures, disabling or annoying or negative for me) are not a matter of my life or death. They’re (often) a matter of stress and/or anxiety, and they have an impact on body, senses, emotions and reactions but they’re not life and death. I mention more about the desensitisation process in Desensitisation but this piece isn’t about that.

This is more those things that whatever one tries to do in terms of desensitisation, the trigger or internal responses are never decreasing and are often only seemingly increasing in their impact on me. Many autists tell of things that for them are so great that they cause fight or flight or shutdown reactions or may trigger other responses. I have so many of them and will not attempt to write about them all here but will mention a few. The purpose of writing about them is to potentially help others (who might be like me) see this is a ‘given’ for any of us with this wiring and just a part of what ‘is’ and that is okay. That must be okay. We can recognise it and find ways to manage it if we already know that desensitisation to it isn’t possible. This helps us stop attempting to fight it in some way, which is futile, disheartening and exhausting for no benefit at the end of the process.

Some of the sounds I cannot bear are those associated with Louis when he is eating. I’m not even going to go into detail about all the mulching and munching and slopping and ‘um-umming’ that are a part of it because it is likely you probably get the idea. Louis has significant and seriously high-level ‘special needs’ (including profound deafness so he cannot hear the noises he makes externally) and it may seem fully unreasonable that I find this such a nightmare to cope with. Unreasonable or not, I cannot cope with it. I have tried eating with him and having background noise on…and if I am super-calm and not in any way heightened myself, I can just about manage that. But if there is any level of stress or…well…anything slightly out of balance in me internally (and usually that is the reality), we (my husband and I) have learnt I can’t cope with it. He has learnt (over the years) to block it out. I have tried (repeatedly and still do try) but I cannot block it out. and if anything, am now more sensitive to it than ever before. It sometimes gets through to me at such a level that I do not want to be near food or eat food (which is an unsustainable position for obvious reasons). It also has the impact of making me feel paranoid about eating in company in case any noises are ever heard from me as I eat.

In our household, we often eat at different times, partly because Louis prefers to eat at exactly 5pm and partly because of my issues with the sounds made by Louis. However, a few times each week, we do make sure we eat together as a herd (which is my affectionate term for our family group living here). I sometimes have an AirPod in my right ear (which is the direction he sits from me at the table, and as I often have AirPods in, it doesn’t mean anything negative to him). I’ll have one of the books I play on repeat playing in that ear, but at a low level. I can then usually speak to Simon (my husband) but can only manage this ‘juggle’ for the time it takes to eat the meal. On the times I try to make it last longer as a process, I find I get snappy or irritable and it is simply because of the sound triggers. I then try to modify the (maybe unreasonable) tension emanating from me but when I fail at that, I find I am then shouting at myself (inside my own head) to be a nicer person. Actively trying to block the mulching noises while ignoring the book playing (and the feel of the AirPod rammed into my ear) while watching my own manners and trying to act as if I’m having a meal with my family and an every-day interaction with my husband as I shout at myself internally to ‘get a grip’ and ‘stop being so ridiculously sensitive’ is enough to send me into a mini flat spin. Ridiculous? Probably. Real? Absolutely.

My choices are that I either get cross with myself for not being able to block it out and for being such an unreasonable human because Louis can’t help the noises he makes when he eats (and that is my usually internal response to my reactions to the sounds), or I get cross with him for making the noises (I don’t do that), or I tell myself that it is what it is and I’ll manage it in the best way I can on any given day, aware that I will be more sensitive to it on some days that on others (on the best days, this happens). Occasionally, I put both Loops earplugs in to help, but this is a last resort for me.

It is likely that I am not alone in having such huge reactions (even if all are only internal) to exposure to those sensory sensitivities we simply cannot control. From the little I have seen of the world and the people in it, there then seems to be a few options concerning what happens next. For some, these things become a focus point and become a growing barrier because it’s all too much, resulting in the seeming necessity to avoid them at all costs. I understand that response, but I fear it. Does it not simply give that sensitivity even more power than it already has? For some, the sensitivities are just there and although it is not ideal when they are encountered, those people kind of ‘mop up’ after the exposure and move on without dwelling on it too much (until the next encounter). Some will actively force exposure in an attempt to desensitise themselves, and this seems to have mixed results.

It is not for any individual to tell another what to do or how to react or respond to their own triggers. It is for each of us to find our own ways to manage them. We are however punching into the air if we get into a twizz about the fact we have them (and if we have an underlying message to self that we ‘shouldn’t’ have them). It is not a fundamental failing in you that you have these sensitivities. It is simply your reality (as it is mine). You don’t need fixing although admittedly you might need help with ‘management’.

Another Dawn ‘biggie’ is to do with body smells. Oh my. No. We could go into any of many of these (don’t panic for any who have hugged me whilst hot…it’s not that so much as other smells which we will not go into here). Let’s just deal with one: breath smell. Breathing at me? Please, no. Talking whilst looking at me but while standing too close? Also, please, no. It won’t have happened from you to me – not for the past many, many, many years…because I keep my positioning away from the air of others directly coming at me. Since I started doing that (probably 15 years ago), not an issue for me. You’ll notice (if you’ve met me) that when I speak to anyone, even if it is in a professional context where I am feeling confident, I angle myself in an attempt to not allow my air to go near the person with whom I am speaking. I even hold my own jaw tight when avoiding my own breath when in a room by myself. In fact, because I’m writing about it, I’m doing it now. 🤷🏻‍♀️

Okay, I’ll go there. Some of you might be thinking it. Kissing? Easy. I don’t. I had ways of managing it in what feels like a previous life…using either alcohol (and I realise my belief that I was masking any of my natural odour might have never worked) or mouthwash/gum (also with mixed results, I’m sure) or a combination of both. But now that I don’t drink (144 days dry now) and now that I’ve made different physical barriers about what is and isn’t allowed with me…no issue. No kissing. Simples. As I mentioned somewhere else in a writing, my husband kissing my forehead three times…yes, allowed. Anything else…no.

It is my belief that those of us who have our own ridiculously sensitive sensitivities need to manage them as best as we can. I think we must decide on our own ways of doing that and try to ensure that these ways are accepted by those in our immediate circle of people or our own herd. Thankfully, I have the kindest of husbands who does not push it with the ‘lines’ I have in place in this season of my life. I realise not everyone will be in the same fortunate position as me. Does it mean I do not show affection or love? No. That is preposterous to even consider as a possibility. I do that all the time. I do that by how I am. I do it by not masking. I cook for us and do household things because I choose to (and this for me is a demonstration of showing affection). I do it by talking a lot and that includes oversharing (which is a thing that will crop up in another ‘piece’). These are just a few of my ways to demonstrate affection or love. For so many reasons of my own, I am how I am in the now and he (my husband) knew that before he wanted me to move back here after my three years away from ‘home’. Is our relationship conventional? Probably not. But then, is any relationship conventional? Probably not.

We beings of many sensitivities have choices, I believe. We can force or fight our sensitivities, or we can give them full control or (I believe this up-coming one is the best way) we can acknowledge and manage them (as best we can) but not allow them total dominance over all life areas. You will decide on limits for you in different seasons or contexts or even on different days, just as I will decide for me. We are not broken. We have some sensory sensitivities. Some we can avoid. Some we cannot. But we’ll manage them, one way or the other…even if the way of management needs to shift as the current pathway is navigated.