Misophonia…another “oh, that’s just my autism” moment

I’ve suffered (I mean SUFFERED) with misophonia all my life and not realised it. Or should I say, I realised I had it alright, I just couldn’t give a name to it and had no idea it had anything to do with being autistic (which, in any case, I didn’t realise I was..until I was 51). That’s a lot of years spent living in the dark with such a primary effect upon quality of life!

Misophonia isn’t just related to autism but there seems to be a fair amount of overlap; and I’ve heard it listed as a trait by just so many women on the neurodivergent podcasts I listen to lately. In my case, left unattended and unexplained, it became another reason I secretly believed myself to be weird, over-fussy, bad-tempered and overly-opinionated, far too sensitive, intolerant and generally not very nice so not only was I directly affected by my misophonia itself but I became quite judgmental of the very fact I was experiencing it. Until I knew what it was, I always felt like I ought to be able to get over it…only, I never could and this bitterly disappointed me, in myself. In one particularly painful example, it became such a wedge between myself and another family member (more on this below) that I was left feeling desperately sad and riddled with regrets when they died, after our relationship had suffered because of it for years, and that haunted me for most of my adult life. In short, it became yet another cause of alienation, both because I judged the trait in myself and because misophonia itself made it so hard to be around any of my trigger causes themselves.

So, what am I talking about…what is misophonia? Translated literally, it means “hatred of sound” (a name coined in 2003 by researchers Margaret and Pawel Jastreboff of Emory University) which is ironic since I dearly love so many sounds (babbling stream, birdsong, an incredibly broad selection of music); but those things I don’t love can trigger me beyond adequate description and can even be debilitating if exposed to them for long.

In brief, it’s the propensity to feel physically and emotionally triggered (in other words, to have a strong negative reaction) when hearing certain sounds. Specifically, this response might include feelings of annoyance, irritation or disgust or even anger, rage or aggression. It might cause uneasiness, nervousness or even panic. It can result in feelings of tightness, pressure, extreme heat, prickling sensations, discomfort or pain, increased heart rate or blood pressure and, I would say, even exhaustion or a freeze response if the trigger won’t abate. If some of these effects sound familiar to PoTS to anyone who suffers with it then, yes, I feel there is an association between misophonia and dysautonomia (sudden disruption of the autonomic nervous system), at least in my case.

Of course, we all have certain triggers, think nails down a chalkboard (being the classic example), but the response in the case of misophonia is much more extreme and more easily triggered; and is on a whole other level than just a simple aversion or strong dislike. This thing can feel all consuming when it occurs and can blank out the ability to process normally or to override the effect out of politeness; or, if you do learn to mask it and struggle through (as I know I did for a lot of years) I suspect the internalised intensity of it can force itself “out” into other effects such as migraines, crashing fatigue, chronic pain and other symptoms typical of when emotions get denied their proper expression or recognition. Looking back at the job I was in right before I had my health crash, I can identify numerous misophonia triggers that I was subjected to every day in my open plan office and which I tried to deny were affecting me…until it all became too much and my entire nervous system collapsed into a cacophony of different health symptoms.

Typically, the effects of misophonia first appear during the pre-teen or teen years around age 9 to 12, often around puberty, which is consistent with my own experience, plus women seem to be more prone to it than men, all of which seems to suggest a role played by hormones. I wonder if women with PMS are also more prone as I know I certainly was. Often, the initial trigger comes from a particular family member or some aspect as home life, which is again consistent with my experience, and then new triggers can develop over time.

In my case, it was around the ages of 13 to 18 that I first began to react to certain noises my dad made, especially when he was eating (he was very prone to open-mouthed eating because of his prominent teeth) plus there were other things that he did, probably health related, such as heavy breathing, again with his mouth open. For the record, being exaggerated bothered by eating sounds or breathing sounds are two of the most often reported triggers of misophonia. In my dad’s case, I was often left alone with him for a couple of hours after school and would feel a sort of rage building up in me as these trigger sounds persisted and, all the time this was happening, I had no idea why I was taking my annoyance to such an extreme level or why it was so adversely affecting my relationship with him but it really did, to the point I began to treat him with open contempt and write words of bitter vitriol about him in my diary over that period. For years, I attributed this strange flip in our relationship (since, before this phase, we had been fairly close) to some sort of teenage rebellion thing I must have been going through though, in dad’s case there was nothing much to rebel against since he was so mild-mannered and it was distinctly out of character for me as I didn’t push boundaries in any other ways. However, this “thing” I had against him became so all-consuming that I couldn’t be in the same room with him for long and I know he became quite troubled as to why I now apparently “hated” him.

Really, I was just a kid who was utterly bewildered by these extremely powerful, physical, responses in my body to certain things that he did that had no name or explanation. I couldn’t just override them as they had my blood boiling on the inside and I just had to get away or would glare at him with such rage or disgust that it must have confused him utterly. Then my dad died when I was just 20 and I felt just so saddened and ashamed that I had overshadowed our relationship with this strange, visceral response to being around him for the last few years. This troubled me for the longest time and, of course, I held it against myself the whole time because I didn’t realise about misophonia. Paradoxically, I now look back at some of the ways he struggled in his health and wonder if he also suffered from it as he would become uncharacteristically enraged at certain noise-triggers such as when people were talking when he was trying to watch the television and was completely avoidant of busy places or going anywhere we were likely to be close to other people. Again, deep misunderstanding between us prevailed and I now wonder if so much of it was founded on biological factors that neither of us could help. Like me, he was acutely sensitive, had tinnitus and was probably ADHD and autistic.

It was another couple of decades before the effects of this really flagged up again, although I continued to struggle around people who eat noisily or talk with their mouths full…not just a little bit but my mood could flip to internal rage or just having to get away in a split second when exposed to this. It could make or break my ability to be around certain people or in certain environments and one person in particular, that I stayed in contact with for years, would routinely trigger and enrage me so much (which I mostly kept bottled…or would vent at some trusted person after the event) that I would come away bewildered as to why I felt so adversely towards her, out of proportion to anything she really did or said, but looking back she displayed so many of my trigger behaviours. It’s only now that I look back and see how I learned to navigate my life according to the effects of misophonia or that, when I wasn’t able to get past certain triggers, they would gnaw away at me and inevitably erode my health.

It was after my health crash happened that I became much more aware of how certain sounds have this extremely strong effect on me. Worse on some days than others, it seemed like certain noises became torture to me in a matter of no time at all…there was no gradual build up; from 0 to 60 in a split second, I simply couldn’t bear to be around them, would have to leave or bury my head in pillows, use earplugs, play loud music of my own choice, just anything to get away from the effect.

One of my most persistent triggers is the sound of traffic which, as I have mentioned in other posts, isn’t “just” a bothersome noise to me but, rather, feels as though it gets trapped inside of me, as though it takes over my whole body like a guttural inner vibration that strips the very skin off me inch by inch, eroding down my nerves until they are red-raw and can’t take any more. The more the volume and frequency of traffic noise has built up where I live, over the years, due to the exponential growth of housing developments in our locale and especially since the wonderful respite of the first lockdown when all the roads went blissfully quiet, the more sensitive I seem to become to traffic noise, making me near desperate to relocate…not just because I would like to move house but because I NEED to, as a matter of absolute priority.

Another classic anecdote I have heard from more than one autistic source, in the various podcasts I listen to, is that of when an autistic person decides to become a teacher (usually long before realising they are autistic) only to find all the inherent noisiness of school life…scraping chairs, shouting kids, slamming doors, echoing corridors…drives them to absolute distraction, to pain, to meltdown, until they simply have to give this up and find another career. This interests me because I so very nearly chose the teaching profession, since just so many people assumed that was the best route for me, but one of the main reasons I realised, very early on, that this wouldn’t work out for me was that I already suspected I couldn’t cope with all the noise-triggers. To this day, if I happen to hear the sounds of school children screaming in a nearby school yard at breaktime (for instance, one of my dog-walks used to take me past a local primary school and I would sometimes time it wrong and have to turn around) I literally have to get away from it as it triggers such internal chaos in me that I can’t be anywhere near all that screaming cacophony, it makes me feel murderous inside. I know this profoundly bothered me when I was at school myself…noisy playgrounds and sports grounds, echoing gyms with screeching shoes on polished floors and shout-talking, the clatter and screech as an entire class pushed back their chairs as one and dashed for the door when the bell rang…all these sounds were torture to me at school, so who knows how much they affected my nervous system or added to my fatigue and overwhelm by the end of the day. In fact, reading my 14-year-old diary right now, its interesting how I spent all my breaks in the music room with a small group of friends; never in the playground (which is how I learned to cope).

Its a well-known fact that having misophonia can mean avoiding certain social situations with friends and family, missing out on aspects of school or work, even of family life. I know mine affected me profoundly as the mother of a young baby. I found crying so distressful that I would do almost anything to keep my daughter contented which lead to me carrying her with me everywhere I went for the first couple of years and, no doubt, giving in more than I would have wanted to for long after that. I couldn’t bear the sound of most of the electronic toys that children that age play with and so many of the TV programs geared at that age-group would force me to be out of earshot as they would drive me to distraction with their singsong voices and the particular type of music and sounds they play (to this day, such programs rouse such intense dislike in me I can’t be anywhere near). I also really struggled to be around the noise of other people’s babies or small children, crying or not though I loved to play with my own daughter (its always different with your own) which meant I tended not to join in very much; nor could I cope with my daughter having a load of friends round so that whole side of things never happened in our house…my once a year effort, for her birthday, would take everything I could give and then a long time to recover. Let’s just say, I evolved my own style of parenting and it all seemed to work out as she’s a healthy, balanced kid but she learned early on that “mum” wasn’t like all the other mums.

My life at home these days (traffic noises aside) has been made as misophonia friendly as possible, even before I knew what it was. My husband is one of the least annoying people I could possibly live with and, even then, there is just one routine I cannot bear to be around for and that’s when he is getting washed and dressed in the morning, which is the reason I tend to be up so early so that I can be well out of earshot before it happens (every sound he makes in the bathroom and opening or shutting cupboards in the bedroom has me gridlocked in unbearable tension and pain as I try to fight back the vitriolic attack that wants to launch from me, though I am never like that normally…I strongly suspect misophonia is even more acute, and less easily controlled, first thing after waking up when my nerves are at their most sensitive). I love my husband dearly but the wrong noise can make me want to strangle even him, or any other person from whom such a sound omits. The difference, in his case, is that he works extremely hard not to aggravate me, for which I am profoundly grateful. Not so my neighbour who has a vintage camper van that he likes to rev for hours on end while he’s working in it; murderous thoughts so often flood my head when my afternoon peace is blown to pieces by this and it can be enough to destroy every semblance of calm or creativity in me, or even trigger pain and despair, since it is way too loud to block with earplugs or music thus quite inescapable. In such cases, I fixate and I tense and become the abject prisoner of the noise…whereas my husband can agree its bothersome yet somehow carry on and not give it a second thought.

My only antidote, if I really cant get away from it and if I’ve tried every other tactic to bring down my physical response to the particular noise, is to hyperfixate on some other thing capable of distracting me more; often, its my writing…so if I tend to write a lot of words in this blog, you probably have my misophonia to blame for it. I also listen to a lot of music!

So, now I know about it, I contemplate my quiet and highly insular life and wonder how much of it would look this way if it wasn’t for the effects of this trait. I certainly acknowledge that my exposure to misphonic effects has increased since the pandemic as I used to spend 8 or 9 hours a day alone but am now seldom alone since my husband works from home; however, I do have to make sure to be alone, or to block all but my chosen sounds, for several hours a day and that is an absolute given or I would, frankly, go nuts (and weekends can be vastly more triggering). Misophonia has clearly contributed to my introversion so very much that the two things are impossible to pull apart.

The reality is, I rarely go out these days and, when I do, it has to be because I really want to be doing something specific or travelling somewhere I really want to get to (which helps to keep my focus on those things and away from so many triggers). Even then, it can be fraught with risks. Public transport, shared spaces and restaurants can be a challenge for most people but, in the case of misophonia, certain “ordinary” sounds and triggers can make them unbearable or curtail something looked forward to because you find yourself unable to concentrate on what anyone is saying, or even to stay for very long, because of some painfully distractionary noise. If you also suffer from other sensory processing challenges as I do (I am hypersensitive to EMFs, to smells, to certain lights and am an empath around other people, picking up on their random feelings and emotions) then you really have your work cut out to cope in social spaces. I also suspect I have more than a touch of misokinesia (hatred of certain movements) as born out by the occasional irrational urge to bawl out my husband for fiddling with his ring, stroking his own arm or gyrating his foot across the other side of the room (and if you have it, try sitting next to a person with such a quirk at the cinema or theatre, when it can put your entire nervous system onto red alert – this article tackles the very topic). Has this all become a lot more triggering since I had a complete respite from public spaces for several months during lockdown? Most probably!

There is also a known cross-over with tinnitus, which I have quite badly, meaning the two effects together can create so much internal distraction you come across to other people as though you have a hearing disability though, in actuality, its much more likely that your hearing is far too acute…so acute you pick up on everything, so much so that you can’t filter out what is irrelevant and get to what is most important to pay attention to. When I book a table to meet a friend, I always have to ask to be put in a quiet corner away from music speakers and, if possible, some distance from other tables, ideally in a nook or separate room) so that I can even begin to follow what they are saying to me…and not be so triggered, internally, by arbitrary sounds that I come across as short-tempered, distracted or overwhelmed, even before they begin to say anything. Given all the other social deficits I have to deal with as part of my autism, this is an unwelcome adjunct that throws complete unpredictability into every social situation…since I never know when or how much my misophonia is going to be affected.

If this all sounds extremely exaggerated then I am not alone in the intensity of what I describe (and please bear in mind that this is the first time I have tried to put these experiences into words, in 54 years, as I have harboured such shame and fear of even mentioning them). One writer on the topic, Dr. Barron Lerner (an author and NYU professor) has misophonia himself and describes triggers as being “Awful…like your blood is starting to boil”. He talks about his heart racing and experiencing stomach ache, which is another effect I know I can get completely out of the blue (not terribly convenient when you have just sat down for a meal). In an article on the topic in the New York Times, he shares “As a primary care physician, I find that misophonia can present some special challenges: At times, my patients can be the source of annoying sounds. At other times, the condition can be a source of special bonding if I realise that a patient is a fellow sufferer”.

Another researcher Dr. Marsha Johnson, who is an audiologist with the Oregon Tinnitus and Hyperacusis Treatment Clinic who has studied misophonia for over 20 years, explains that people with misophonia react even before they are cognitively aware that they are hearing the trigger sound. In other words, this reaction is completely reflexive, beyond the cognitive mind and cannot be preempted or controlled. Her description is that “It’s like a tsunami of negative responses…It’s instant. It’s huge. It takes over most of their cognitive functioning.” By the way, it has only been considered a disorder since 2000 (and is considered a primary, chronic, disorder in its own right inspite of cross overs with other conditions), though I can personally vouch that its been around for far longer than that!

Another study suggests that misophonia may develop as a result of a hypersensitive connection between the auditory cortex (part of the brain that processes sound) and the salience network (the part that determines what sounds, and other stimuli, you pay attention to). The result is an increase in activity in these parts of the brain, prompting a state of overwhelm and overreaction including an emotional response.

As ever, the impression I get is that this all potentially comes down to lack of synaptic pruning in the case of neurodivergence; an effect of “two many connections working at once” that may become even more chaotic once the additional effect of hormones enters into the picture at puberty and (I would also say) during the highly disruptive time of perimenopause and menopause, since which my misophonia seems to have become much worse again. A study has demonstrated that increasing levels of oestrogen play a key role in auditory sensitivity and the encoding of more subtle and complex features of the sound stimulus (oestrogen dominance, often resulting from manmade sources in the environment, diet and water supply, is a prevalent issue in modern times and can become worse up to and around puberty and menopause). However, oestrogen also provides an essential neuroprotective role against the effect of too much glutamate and is essential to the proper modulation of GABA, glutamate and serotonin. There is a desperate need for more studies to be carried out in this regard as not all oestrogens are created equal and there needs to be a clear distinction between natural or bioidentical sources and manmade toxins (xenooestrogens found in various plastics, sealants, consumer goods, preservatives, and pesticides) or synthetic replacements.

I have also noted that the effects of misophonia can get much worse if serotonin levels are particularly low so I do what I can to boost these (and avoid things that deplete them such as drinking alcohol). The changing seasons have an effect on my misophonia: I notice I am a lot more sensory challenged when there is a lot of cloud cover (so winter months can be hard), almost as though sensory effects become super-concentrated compared to when the sky is high and bright in spring and summer and I wonder if other people find that too. Taking GABA supplements can help me mitigate the worst effects if I am prompt about reaching for them (or equally, having a cup of GABA oolong tea), also l-thianine can be a help and a good night’s sleep can work wonders to keep it in check (other animo acids can help with that, as I have shared before). There is a likely link with too many glutamates (see my earlier post on this) and in fact a new drug trial for misophonia focuses on this very theory (“Too much activation with glutamate makes people with autism very sensitive to loud noises and other, sudden changes in the environment, increasing anxiety and fear”) though I prefer to stick to natural remedies as I am also hypersensitive to pharmaceutical approaches.

There is a potential link or cross-over with hyperacusus which is when noises seem louder than they should. As well as alluding to a potential link with oestrogen and mentioning the importance of GABA to mitigate high glutamate levels, as above, this article on the topic recommends that you avoid caffeine, alcohol, cigarettes, salt, stress, gluten, MSG and food dyes, (obviously) loud sounds and environmental allergens. All of these, excepting salt which I sometimes need to help mitigate POTs symptoms, are triggers I have learned to avoid myself over the years since they all make my sensitivity much more severe.

One study linked misophonia to having a larger amygdala (the part of the brain that impacts how you process emotions, especially as regards potential threats) along with irregular brain connectivity, for instance between the auditory and limbic parts of the brain. Differences in amygdala size and behaviour have already been associated with autism by various studies.

Important to remember, research into misophonia is still in its infancy. As this blog post, which aims to focus on some of the positives of it (yes, positives) points out “misophonia research is still, compared to many other neurological disorders, in its very early stages. At the time of writing if you type “autism” into Google Scholar it brings up 1.34 million results. Type in “dyslexia” and it brings up 272,000 results. A search for “misophonia” gets just 823.” It goes on to draw on some research conducted by Darya L. Zabelina from Northwestern University who, with her team, found that people with misophonia may have a higher propensity for creative genius, in particular an ability to: “… integrate ideas that are outside of focus of attention, leading to creativity in the real world”. In Science Daily, Zabelina is quote as saying “If funnelled in the right direction, these sensitivities can make life more rich and meaningful, giving experiences more subtlety” (a lot like all the other sensitivities of neurodivergence; they all have their plus side). I’ve linked to an article about it below.

Whatever the cause, misophonia can be an extremely real and life-affecting trait to live with, so discovering it has a name and that it is a trait shared by so many other late diagnosed autistic and ADHD women (and probably many other neurodivergent individuals too, but these happen to be my focus since I am one) has been…in its way…a relief. When an effect is this isolating and also riddled with guilt because of some of the reactions you experience towards other people, it can come as such a relief to realise you are not suffering all alone and that its out of your hands, not your fault. As I gather more and more anecdotal information from other people similar to myself, the ability to attribute some of my most troubling foibles to “oh, that’s just my autism again” is, in its way, enabling me to feel less broken and more connected.

So yes, misophonia remains an unpleasant and life-quality detracting effect but I have lived with it for just so many years that I have now learned various ways of mitigating, if not all then at least some of, the effects; largely through avoidance and distraction, also giving myself a choice to take it seriously and walk away from triggers, however “odd” that might seem to other people. With practice, I’m learning to speak up for myself and self-advocate for the need to avoid the harm that misophonia can cause, the same as anyone else might need to step away from whatever hurts or bothers them (just because my trigger seems silly, exaggerated or invisible doesn’t make it less valid than theirs). Being able to accept it, at last, as something that is simply part of my hard-wiring is the best possible outcome I can hope for and allows for a certain degree of reconciliation to take place.

I only hope that more research is conducted and that even more neurodivergent people are made aware of it (and those around them can be helped to understand it, and take it more seriously, too) so that they can start to come to terms with it as best they can. We seriously need to lose the stigma of mental illness, which is affecting a lot of families with kids who resist being labeled with this in case it is assumed that they are psychological loose cannons on deck (much like the fears I have had of being judged for it, all my life). This article on the topic suggests that “misophonia should be completely re-branded and hereafter named Wendy’s Disease (which is Latin for “too much awareness”)” rather than depicted as yet another deficit as so many neurodivergent traits are (quote from Wendy Aron, who has suffered with misophonia since she was 10, writing for Psychology Today, link below).

Even if you prefer being alone, as I mostly do, then its possible to be alone…together, and to get something profoundly positive out out that (I have discovered lately). Together, we can share our experiences, offer coping strategies, even a sense of community or some much needed understanding and compassion to other sufferers so that, as resources begin to grow (for instance, the website misophonia.com offers a Facebook support group and information resources for family and friends and the tags #misophoniagang and #misophoniaawareness apparently lead to thousands of videos on TikTok, though I don’t use it) we get to put the loneliness and stigma behind us and, frankly, get on with life a little better than before.

References

Misophonia: physiological investigations and case descriptions – Edelstein, Brang, Rouw, Ramachandran.

Structural and functional brain abnormalities in misophonia– Eijsker, Schröder, Smit, van Wingen, Denys.

The Brain Basis for Misophonia – Kumar, Tansley-Hancock, Sedley, Gander, Bamiou, Griffiths

What is misophonia – Medical News Today

Please stop making that noise – article in the NY Times, Dr Barron H Lerner.

Tilting the looking glass: misophonia and the beauty and brilliance of differently wired brains – Allergic to Sound.

Study Reveals Misophonia Sufferers May Be More Prone to Creative Genius – Allergic to Sound.

Why misophonia needs a new ad agency – Psychology Today

Estrogen Controls How The Brain Processes Sound – University of Rochester

Image by stockking on Freepik

2 thoughts on “Misophonia…another “oh, that’s just my autism” moment

    1. I’m sure there is and I feel I also have the movement and visual versions of this, also sensitivity to “frequency/vibration” for which I have yet to find a name. Will be writing more on this soon as its a can of worms right at the centre of my long term health issues.

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