Sound Sensitivities and Autism: Helen's Story
Since launching Calmer® we've heard how much they've been helping autistic people with managing noise sensitivities. Helen is one of the people who got in touch with us to let us know how helpful she'd found them.
Helen agreed to take part in this case study where she shares her experience of life as an autistic person and some of the different sensitivities she has.
We think Helen's Story is a brilliant and informative read and believe that it will be incredibly helpful for many people.
Thank you Helen.
Find out more about Calmer here
I'm a stay at home parent with two kids - I live a fairly ordinary life. I play Pokemon Go, read a lot and hang out with my kids, watch TV, etc. I don't really have much time for hobbies, but always have areas of interest that I'm reading up about or obsessively watching videos about. I help run a few evidence based peer support groups on Facebook - focused on things like parenting, neurodiversity, LGBTQIA+ issues, pet care, mental health, self-care, cosmetics, etc. I've made a lot of good friends online through those groups and tend to do all of my socialising/peopling online.
I'm still awaiting formal diagnosis, as I didn't realise that I might be neurodivergent until I was in my mid-forties. I could see that one of my kids had some fairly classic traits, so I was looking into that and realised that my "normal" was different to other people's.
My husband went through assessment through his work (he works in mental health) and was diagnosed a couple of years ago, I went to see my GP around the same time, and they referred me to a psychiatrist who gave me an initial assessment - the result of which was that he felt I have ADHD and am autistic. In my health trust area, formal diagnosis is done by an adult autism/ADHD assessment service which covers a very large area - and as such, waiting lists are long. Then COVID happened on top of that, and two years later, I'm still waiting.
This is unfortunately an all too familiar story for Autistics who flew under the radar when they were younger by learning to mask at an early age.
It's my normal. It's who I am. From being a little kid, I found a lot of other people kind of baffling and didn't understand things that other people seemed to just know. So I watched and copied what other people did. I've carried on watching people my whole life and even focused my career, when I had one, towards that by working as a Recruitment Consultant. But I always felt quite ashamed about the fact that I didn't understand other people always, even though I learned to read other people quite well. I also carried a lot of embarrassment and shame about the fact that I'm extremely sensitive to all kinds of environmental things and was always accused of "over-reacting" as a child. People used to describe me as someone who wore my heart on my sleeve, because my emotions were never far from the surface, and always seemed to be huge compared to other people's. So, I hid everything, pretended to be this super capable person and ended up an anxious and depressed mess.
Realising, when finding out more about Autism, that I had many traits and that there were literally hundreds of thousands of other people out there in the world who have been through life with similar experiences and experiencing the world the same way that I do, was a huge revelation for me. Just massive relief that I wasn't broken, I wasn't too sensitive, I wasn't too emotional, I was just Autistic, and, that that's an entirely normal and good thing to be.
Day to day, I still find a lot of people baffling, but I've found a community online of people who think like me, who I do understand and who understand me, and that has been very validating personally. I've always struggled with all kinds of relationships, and not understood the social niceties, and always seem to end up offending people or doing or saying the wrong thing in some way - but that's never the case with other Autistics. They get me the same way I get them.
I have a lot of sensitivities still, but now I know why, I've been able to find ways to help myself with them. Things like rediscovering stims (self-stimulatory behaviours) that helped me as a kid, not worrying about the fact that I prefer to be in low light conditions instead of worrying that I was some kind of odd vampire person, finding clothes that aren't scratchy and removing all the tags and labels from things.
Which is how I came across Calmer.
I'm very sensitive to certain noises - they trigger anxiety, irritability, rage even, depending on the noise. I found out a few years ago that having that kind of response is called misophonia, and then discovered that that's a common autism spectrum trait. I thought the only way to combat it was to totally block the noise or avoid it at all costs - which, when you're a stay at parent isn't practical or safe because I need to be able to hear what my kids are up to and if they need me. Sometimes, they're the ones making the noises. So, it was a big issue for me.
Then I saw a Facebook ad for Calmer.
Noise is a complex thing for me. I'm both sensory seeking and sensory avoidant with it, depending on the noise in question and my mood. I have always been hugely into music, because I can feel it flowing through my body and it's such an amazing feeling to have music that I love turned up really loud and to let it wash all over and through me. I've always used my mind as an escape from life, and music can take that up an extra level. I played various instruments as a child and have always sang - never in front of other people, I'm incredibly shy about anything like that - but singing has always been a stim for me - a good way to get emotion or energy out when it's getting overwhelming.
However, some loud or unexpected noises have always given me massive jump scares, terror, and used to bring me to tears as a child - I can remember being paralysed with fear and unable to speak during thunderstorms and by aeroplanes flying over growing up. Lower repetitive noises are an extreme irritant to me - I can't bear the noise of a clock ticking, for example. Certain types of music trigger the same kind of reaction, the noise some people make when they're eating can drive me away from a table, even though they're barely making a noise. Another person's breathing can be unbearable for me to hear - and it's just normal breathing. It's easy to avoid loud noises if not unexpected ones, and so that's less of an issue (I do have ear defenders, several pairs of Bluetooth headphones and ear plugs to block out loud noises, however), but lower level noises are unavoidable.
There can be layers of them in any environment. It becomes impossible to tune anything out and it begins to feel like my brain has been scrambled, which makes me feel panicked and overwhelmed. I generally have to remove myself quickly or do something to distract my brain (singing out loud is a good one for this, not always practical when you're in the middle of Tesco, however).
Otherwise, I meltdown. Which for me can look like me unreasonably losing my temper over seemingly nothing, or getting very emotional and bursting into tears, or feeling like I'm about to, or actually fainting. Again, not great in the middle of Tesco (and very embarrassing).
When I first saw the ad for Calmer, it seemed too good to be true. How could a tiny bit of plastic in my ear help with misophonia? As I mentioned above, I admin in various evidence based Facebook groups, so am used to finding sources of information, reading studies, etc to get to the bottom of claims being made, and after spending a couple of days looking into things, realised that there is evidence to back everything up. So that satisfied my inner sceptic. I was a bit concerned about the cost, but then saw that there was a 100% money back guarantee and decided to try a pair.
I really wasn't expecting a great deal, if I'm perfectly honest. There are a lot of things out there which claim to help with all kinds of issues, and very little actually does anything. I had kind of low expectations.
A couple of days later, they arrived. I popped them in my ears - wrongly initially (it pays to properly read the instructions) but as soon as I got them in right, within seconds, even just being at home in my usual safe environment, I felt hugely relaxed. I could still hear everything.
But, a layer of stress that was normally always there, disappeared. My shoulders, upper back and neck, which are always tense with hard muscles - I have to concentrate hard on relaxing them to get any kind of respite normally, suddenly went soft. It was almost like I'd taken a tranquiliser. I kept them in for a few hours initially, and nothing bothered me. My kids were whining about something, which would normally drive me up the wall, but, it didn't ruffle me. I was able to do things around the house that I'd been putting off for ages because I'd been feeling so burned out. I took them out and didn't sleep in them the first night and found that midway through the next day, I was back to feeling very tense again, and feeling like I needed to hide under my weighted blanket for a couple of hours. So I popped them in my ears, and, again, within seconds, I was relaxed, calm, felt like a could cope with getting on with my day. Which I did. I left them in from there on. The day after that, I ordered a pair of night ones to sleep in (as well as some ear plugs, because I needed some new ones) because I was so impressed and knew that I didn't ever want to go back to not having them in.
The biggest revelation to me was just how much noise was an issue for me previously without me realising. I knew I had noise sensitivities. I knew I had misophonia. I knew I sometimes deal with tinnitus. I know I dealt with anxiety, panic, etc. So I knew there was an issue, but I'd never connected the dots as to how much of an impact that was having on my day to day. The last year has obviously been hugely stressful for everyone, I've spent the bulk of it shielding at home due to being immune compromised, with my kids 24/7, home schooling as much as we could, etc. I was feeling pretty badly burned out, and wasn't functioning particularly well. Calmer has turned that around for me. Taking away the stress that noise adds to my life has enabled me to get my poop in a group, get more organised, etc.
I've always had a physical sensitivity with anything in my ears - which worried me initially, because I thought I was going to be having to keep taking them out. I use in-ear ear buds, but can't bear them for longer than about an hour as they begin to hurt. However, Calmer feel very different, I'm aware of them being there but my ears don't hurt or feel full or blocked in any way - I'm a week and a half in to wearing them 24/7, and increasingly I forget that they're there. They're easy to put in and take out, and I've taken to popping them out whenever I wash my hands to give them a quick wash at the same time before popping them back in my ear - which satisfies my hygiene worries.
I've also discovered that I now have a new stim - it is ever so satisfying to twang the wee stalk on them when they're in your ear. They make the best sound. Very good for distraction.
I just want to say thank you - for making Calmer in the first place, for advertising it on Facebook where the people with noise sensitivities live so I could learn about it, and for wanting to help the neurodiverse community. Not many people know that we live among them and are generally struggling with all kinds of things that don't even occur to neurotypical people. It feels nice to be seen, listened to, respected and most of all, have a solution to an issue which may seem small to those who don't deal with it, but has a massive impact on our lives. I'm so happy to have found my Calmers.
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