Why as an autistic person I may be genuinely struggling, not just in a “bad mood” or being “anti-social”.

Not feeling the “correct” emotion in a particular moment. It can make the situation, people, atmosphere around me feel excruciatingly uncomfortable. Even if I’m aware at the time or not, it’s still extremely confusing. It can also trigger unrelated responses and create a traumatic experience, especially when the same response is revisited repeatedly. The longer I am exposed to these negative feelings the harder it can be to shift out of the mood.  

Many autistic people find it difficult to say what is wrong when overwhelmed, it’s hard to separate, eliminate and pinpoint which emotion, for example, is perhaps causing the most distress, it truly feels as though everything is not ok.  

Being overwhelmed by too many people. The physical disappearance of space around me can be incredibly unsettling, leading quickly to feeling uncertain about where I am, anxiety is the most common response. I just want to get out of the situation and go home ASAP! You would think I would just take off in that case. I have fled on the odd occasion, but even though this is all my mind and body want to do, I freeze.  

Trying to concentrate on more than 2 people at any given time simply becomes a distraction, my brain ceases to have the time it needs to process properly, as a result in groups I struggle to keep up with the conversation. I know as soon as this happens, I automatically freeze, my mind will pretty much go blank and I find it increasingly challenging to speak and move. If I do manage to think of something to say, it often seems a bit random because I’m behind what has been said. Ideally, I prefer to talk to just one other person at a time, it’s still not without a lot of effort and of course depends who it is and where I am. 

Routines may have changed. When plans alter, especially without much warning, the uncertainty can cause me a lot of worry. I’m not quite sure looking in from the outside will ever be enough to fully understand or accept the effort it takes me to reconfigure changes like this. It can be hard to truly know, when you haven’t felt it, haven’t experienced it and especially if you’re not autistic.  

Many autistic people find having a little extra time to adjust to new schedules helpful, and once this happens, (it can become a routine in itself) the relief can be very comforting and relieve so much distress. Familiar ways of doing things can be vital for everyday functioning, alleviating debilitating anxiety which has a huge impact physically and mentally. I definitely prefer to have a clear plan, unexpected or sudden change can be a massive disruption, causing a lot of stress, anxiety and frustration, temporarily or for most of a day.  

Feeling misunderstood. Being spoken over when we don’t answer as quickly for some people would like can obviously become very frustrating. Many autistic people benefit from a little extra time to process, allowing us space, depending on the individual to focus properly on what has been said, asked of us makes a huge difference to the decisions we ultimately make. If this is overlooked it can be very problematic for our autistic minds and unsurprisingly leads to the inability to express ourselves, explain what we want to say properly, or even at all. It can also be deeply traumatic and often brings up past experiences which have impacted us negatively, this alone can be a major trigger leading to feeling incredibly low.  

For me, realising I sometimes need extra processing time has been crucial to understanding my brain better and the way I interpret the world. Allowing myself to pause, taking the initial pressure off, recognising it’s not a bad thing and knowing I’m not a failure for needing this, helps enormously. Overall, I can do more, but also amazingly my anxiety and OCD has significantly reduced. I’m learning to give myself a break and take actual breaks! I think my Mum starting to understand this also, has been the biggest help to both of us too, this extra bit of brain time is very supportive.  

Without that immediate pressure, the stress doesn’t build up as much, without the expectation to answer and just say “something” allows my brain to process at its natural rhythm. The positive impact just a little more time and space has created is clearly visible, less confusion, I’m making more decisions for myself and deep depression has lifted. I’m speaking more and I have found myself trusting my own words again! Before this, I would be stuck for 10 minutes disappointingly observing the fact that I hadn’t said what I meant to, or really even understood what I had said yes or no to! I would often appear silly, fake, fickle, annoying because I had changed my mind again, or couldn’t express my thoughts, as though I just didn’t know what I wanted to say or really had no opinion. Not too long after I would know exactly what I wished I had said but often it was too late. To be honest, this devastated me, over and over. After a while I stopped talking, even thinking what to say in response to people because there seemed to be no point.  

There may be a repetitive, intrusive noise or unpleasant smell around. When they bother me so much and no one else seems to even notice, it can often feel like I’m overreacting. Being affected by sensory, environmental stimuli can truly be so distressing, it can ruin such pleasant moments in an instant and cause a lot of anxiety. Its unpredictability is frustrating, it really could be anything which becomes unbearable for my brain to process and I become quickly overloaded e.g., a ticking clock, a car alarm, cleaning products, perfume, something that has wafted in from outside that I can’t identify, electricity, machinery, a washing machine, a hoover, a TV, obviously even worse if a few of these things are happening at the same time! They can all cause significant amounts of discomfort. I really struggle with sensory overwhelm, being exposed to specific noises, smells and touching certain items creates daily challenges, it’s exhausting and drains me mentally and physically (energy which is already in short supply). I also experience a feeling of increasing vulnerability, this makes me very irritable and leads to a distracted, distressed mind, simply unable to focus.  

May be feeling hungry, tired or need the toilet and just not be completely aware. Some autistic people struggle regulating their bodily systems, sometimes making it tricky to differentiate between what function needs dealing with and in which order. I often feel these needs merging together, as though they are one big system, rather than smaller, individual ones. I just can’t always clearly tell when I’m hungry, tired, (need to actually sleep) thirsty, hot, cold or need to go to the toilet until these things have become pretty much desperate! This can also happen for example, when I’m very much focused on a special interest and time just disappears! It can lead to discomfort, stress and panic when realisation eventually creeps up and if I haven’t been monitoring time, my reactions to those emotions suddenly become overwhelming. At this stage, with also now trying to deal with and process too many things at once the situation can become very challenging, upsetting, ultimately leading to shutdowns and meltdowns.  

Often a transitional period is helpful between tasks, pulling an autistic person out of intense concentration can be very damaging, disruptive, we can actually be left feeling completely devastated. Gentle check ins, count downs/setting soothing timers, quiet time in between are good ways to adjust and can help reduce stress.  

May be irritated and deeply distracted by clothing. Many autistic people find clothing in general challenging, for their individual reasons. Often the texture and how it touches a specific part of our body is basically a sensory nightmare. For me, I particularly struggle with sleeves, wet clothes, labels, bare feet/certain footwear, some textures are very uncomfortable and certain restrictive fabrics around my neck, but I love wearing scarfs! For some autistic people clothing can be physically painful. Texture, tightness, layers, labels and regulating body temperature whilst wearing clothes becomes a consuming, exhausting task which being something we experience everyday can cause extreme discomfort and distress, so, it’s not surprising that this would make us feel awful, is it? 

Misinterpreting other people’s intentions. Direct language is often preferred by many autistic people, but tone within all communication can often be confusing and is very open generally to misinterpretation. Also, how direct language is presented is extremely important, for example, asking questions and giving instructions in a confrontational way, for me can actually feel extremely inconsistent. It feels uncertain, which makes me unsettled and creates unnecessary pressure in many situations. Immediately telling me rather than suggesting how something could be done or repeating the same demand builds intense panic, causing a real sense of injustice towards my thoughts and actions. Not surprisingly this does lead to misunderstandings between people, but only because we interpret things differently, none is necessarily wrong. However, autistic people deserve to be taken seriously, listened to, accepted the same as everyone else. I know for me, the balance between reassurance and “being told what to do” is a very thin line and in the past, it has overlapped often leading to issues. If speech is honest, clear and has purpose then I think many autistic people naturally feel happier about communication. I’m not suggesting autistic people don’t like humour, sarcasm or don’t understand the differences. I personally love comedy, but I also have a very strong unwritten rule book in my head which opens to access situations, (this is probably known as overthinking, but may actually just be my regular thinking process!) to check if it matches up ok and feels appropriate or not. I can see the process developing in tiny details, like a detective’s evidence board. It’s a very instinctive response to me. 

May really need to indulge in our individual interests. Being able to have time to focus on things which are extremely special to me and also the space to stim are beyond vital, they are part of me, I think I forget this too often but I struggle to function well without them. They help regulate my mood, keeping me calm, providing a deep joy. For me I definitely get a strong sense of belonging and understanding, which helps to revive my body and mind. This is obviously incredibly important for my mental health, so not being able to do these things, whenever I want or need to, especially in an environment which is already particularly stressful can be really tough.  Feeling the need to hide our perfectly natural movements, noises, whatever way we stim, is very dangerous, because we are supressing ourselves over and over again. Many autistic people find stimming comforting and would definitely benefit from doing it whenever, wherever we needed to, if only we felt more comfortable, reassured and accepted to do so. Unfortunately, there are still big gaps until society catches up.  

May be in pain but not realise the cause. Pain for autistic people can sometimes be tricky to express, or even recognised as a pain which needs assistance in the first place. Because of this it may go unnoticed or certainly unmentioned for longer than it should. An injury which causes more concern to others may not always be as much of a problem for us and vice versa. For me, I certainly don’t always see my pain as individually mine; I have been surprised a number of times when I have been told or simply realised that everyone else isn’t experiencing the same as I am. I find it quite hard to explain, but I also know I’ve noticed a problem, but it doesn’t register that it’s a cause of concern for me immediately, it happens in a sort of slow motion until one day I really can’t cope with the pain any longer. I have also reacted badly to something which others don’t see as much of an issue, but then others have been surprised when I’ve not reacted how they imagine me to in other situations with what seem like a more common responses, obviously we all experience pain differently. Pain can also be hard to explain because it sometimes comes and goes, leading to confusion, frustration and further pain if it gets worse, spreads and becomes increasingly difficult to identify and treat the original problem. 

Yes, I have always been autistic.

I had ended up spoiling another day out by becoming stroppy, miserable, quiet, walking off by myself and this meant, yet again, we would all go home early, upset, and frustrated. I remember this happening often as a child into my early teens. Having a terrible sickly feeling in my stomach because I knew I had done something wrong; but I really didn’t know what, I wasn’t trying to be naughty. Internally, everything around me just didn’t feel right, things didn’t make sense. An unsettled feeling ran through every vein of my body, making the urge to escape almost tangible. I wondered why I couldn’t just be “normal,” whatever that was, enjoy myself like everyone else. I didn’t understand why I felt like this, so how could I ever communicate my feelings to anyone else?  

The first word people always described me as was shy, but even when I didn’t talk very much, it’s not how I felt. My school reports would, without fail say I was a quiet, sensible pupil and I would receive an A for effort regardless of the grade next to it. I think, this also meant I was seen as mature, coping fine, no cause for concern and therefore could be trusted to run errand for the teachers. For me, being asked to do things I wasn’t particularly comfortable with, like photocopying, taking papers to other teachers, handing things out, doing demonstrations with the teacher in P.E became everyday add-ons to my school life and made it even more stressful. I did make the most of the quiet moments away from the classroom though when I went on those solo quests around silent corridors and empty grounds. I didn’t notice how much I needed the time to recharge, because most of the time I was struggling, problem was, I didn’t even realise. I often felt frozen, with everyone else moving around me. I didn’t always get on with my work, I wasn’t continuously quiet, because of being particularly shy and not having a lot to say, but because I was overwhelmed by my surroundings and the people. Sensory overload was a major issue, I had to divide and conquer when it came to concentrating, I mean, just trying to hear, absorb, understand, carry out, complete what the teacher was asking of me seemed too much before I even began sometimes, so there was simply no room for talking too, because my brain couldn’t organise it all, in the time given. Feeling rushed, constantly unprepared, I just didn’t have the space I needed to process properly. I would be terrified of messing up, become anxious and imagine myself running and hiding somewhere. I think internalising my feelings is a big part of why I was able to go through school undetected as Autistic. My eagerness to learn, longing to fit in and stubborn determination to please, allowed me to pass under the radar. Also, the fact that I was a girl and the fact I learned how to mask successfully.   

Masking is the autistic process of trying to hide who you are, by supressing movements, interests, behaviours which are seen as different and don’t necessarily “fit in” with what is expected. Autistic people have become particularly good at it, but obviously repeating this, often daily, comes at a heavy cost to both our physical and mental health.  

It’s a strong human trait to want to fit in, to feel accepted, early on we learn the easiest way to do this is to behave like others. We naturally copy other humans. It can also be a basic survival technique, to get through life, school, everyday challenges, to communicate with people. Both externalising and internalising emotions can make us “stand out,” for varied reasons and attract unwelcome attention when we just want to be left alone. 

An interesting revelation I’ve discovered only recently is how I chose an extremely popular, confident best friend in school. I remember peers and teachers commenting how it was surprising we were even friends, because we appeared so different. Things make more sense looking back, with the knowledge I have now, I realise she was my social shield in many situations, my voice, I allowed her to talk for me. With just a glance, she would know, I was struggling, an unspoken language we had unknowingly created between us. I found myself blending into the background, finding little bouts of energy now and again to join in, trying to convince others and myself that I could be “someone who knows how to socialise” but it was always very awkward, looking for reassurance, never truly feeling confident or real, the words I spoke felt scripted, as though I had borrowed them from someone else. It didn’t feel good, I didn’t feel genuine, but I had no idea what impact it was really having on me.  

By the time I got to college, I had convinced myself I would fit in, make friends, learn lots of new things, it sounded great, I got to choose the subjects I studied! I was wrong, it was awful. I had no real friends, I clung onto people who were mean to me. I had no sense of self; I found the increased number of people to be around overwhelming. I didn’t fit in; felt completely lost. I remember often feeling so disorientated walking around campus, it was like I was dreaming. I began losing confidence in subjects I had been so excited about learning to a higher level. I would lock myself in the girl’s toilets for hours and hours because I simply couldn’t face people or talk to anyone. I felt frozen, watching the time go by, willing the bell to ring for home time.  

Being good at and enjoying sport has always given me a positive outlet to disperse many frustrations of not understanding why things bothered me so much. Why my senses would get distracted so easily causing me distress; noises, smells, lights which others didn’t seem irritated by. Questions asked when I was already experiencing sensory overwhelm would cause me physical pain. But I just didn’t know what was happening, so panic would also set in, asking myself “Why are you becoming so distressed, why are you so different to others”? I couldn’t explain why I felt tiny details around me so intensely, that no one else seemed to even notice, yet at the same time I would miss things, eventually understanding which others had seemed so bothered by.  

Unsurprisingly, years of masking, had led me to think this way, which ultimately meant at some point it would all be too much for my brain. I didn’t know what was happening and couldn’t put in place anything to help. I felt constantly confused and very clearly because of that a failure, at life. I didn’t believe I worked properly, increasing anxiety meant I started spending more time alone at home, I found it really exhausting to be around my family for any length of time. I gradually couldn’t cope around anyone for any significant period, finding it near impossible to leave the house. I had accepted that I would never get on with anyone, never be able have a proper conversation, that I was just too sensitive, weak, a burden, stroppy, lazy, unlovable. I simply burnt out, too much pressure from where I worked was the final push. I imploded, isolating myself from family and friends, I had absolutely no interest in anything. Depression, anxiety, and OCD slowly, severely consumed my mind and body, filling me with complete hopelessness, a vicious cycle which lasted for 7 years.  

My Niece was born. After a few years, my sister began spotting similarities between our behaviour as children, she researched thoroughly and finally mentioned the word autistic to me for the first time. Specifically, how a pattern was forming for many women, who had often been labelled as shy, quiet in school, completely overlooked, went on to suffer with mental health issues, often misdiagnosed, various treatment not really working properly, then only when, unsurprisingly reaching crisis point, being diagnosed as autistic. I’ll be honest autism wasn’t really something I knew much about at this point, or initially took very seriously because I remember thinking, surely someone would have mentioned this by now. Also, I was under the misconception like many that it was very much boys who (I know we have all heard it before, but that’s very much the point!) are excellent at maths and love trains… (Just to be clear, I’m none of those things!) were autistic, but this is the stereotypical outline of autism the media portrays to us, it is incorrect.  

Being 35, a woman and quite honestly exhausted, I didn’t have the energy to even contemplate the possibility that I could be autistic, it just felt mammoth, beyond my realms of thinking…ever, because at that time, lifting my head was hard enough. I didn’t want to be here anymore. 

However, the word stuck in my brain like a gnawing little beaver, determined for me to find out more. For the first 35 years of my life autism had never been mentioned, not once. I had always felt misplaced, an inconvenience to my family and the people around me because I often needed things to be a different way to most, to just function, be ok. Trying to “get on” with things, but really struggling because they didn’t feel ok to me, they didn’t feel right to my very core, my words were completely inadequate compared to how I felt, so it became easier to be silent. Feeling uncomfortable just became natural to me. I guess my restrictive eating habits, more extreme as a child (such as eating 8 biscuits for breakfast or only pizza and salad cream for years) but still extremely limited into adulthood were me being “fussy”. Following rules, collecting items, and being organised were me being “a good girl.” My keen sense of justice, inability to see things differently, unable to back down simply me being “rude.” Not speaking, walking off and often blank expression were me being “stroppy.” My compulsion to wash my hands regularly, deciding not to eat animals from an early age and distress at anything dirty were just me being “over sensitive.” Yet, these didn’t feel wrong, or bad or unreasonable to me. When you feel things extremely deeply and differently but are told they are not valid, or they are shrugged off like they don’t matter, eventually it becomes increasingly hard to trust yourself.  

Realising that I could be autistic and having a diagnosis happen in the same year, it was obviously a lot to process. After all the years of not knowing, it’s strange to me how clear things have now become. I ask myself often “How did you not know?.” Sometimes the most obvious things are the hardest to uncover or we are taught “different” means “wrong” (wrongly) and I believed this, I simply wasn’t looking in the right place, I thought I needed fixing.  

Far too many autistic people, reach crisis point, before they are taken seriously and finally diagnosed as autistic, which is tragic. I was no different, but I will forever be thankful to my sister for finally realising, because I know I never would have and to the counsellor who I happened to start talking to around the same time. I will never forget how he validated my thoughts, it meant everything. 

Autistic people shouldn’t hit breaking point, before help is finally available, acceptance needs to start early, changes need to happen, many autistic people are being diagnosed too late, as adults, particularly women, by which point without doubt irrevocable damage is done. And why? Because we have brains which are wired slightly differently? My brain alters the way I absorb information and process the world and the people in it. I interpret noises, smells, colours, details, conversations, and emotions so vividly. My brain works at many different speeds, depending on the subject, environment, stimuli. This doesn’t make me special, it makes me, me. It doesn’t make me wrong; I don’t need to be fixed, altered, changed in any way. Autistic people need to be listened to, treated as human beings, and respected just like everyone else. We all learn uniquely.  

I’m beyond angry and sad that autistic people are made to feel like this because of societies expectations and rules, constant questioning, criticising and demands of this “perfect” human being, falsely projecting “how we should be.” Forcing us to mask, go into hiding because won’t be accepted as ourselves. It’s not surprising life becomes overwhelming on a regular basis. The clear reluctance and ignorance of people to listen and learn from autistic people when we are here, so many of us, handing out, willing to share all the information ever needed to make things better so frustrating! 

There are many but, one of the most common misconceptions about autism is that “everyone is a little bit on the spectrum.” No, they are not. Think of it as a colour wheel and only all actually autistic people fit on it somewhere, we are all individuals, unique, we share characteristics, struggles and talents, equally we differ in these areas too. Diversity, from all over the globe. 

I am trying to look forward as much as possible, not dwell on the years of not knowing. I didn’t know for 3 decades that I’m autistic, so I couldn’t have adapted ways to cope better, I simply didn’t have all the information. It’s only now, as a late-diagnosed autistic women, I’m starting to discover so much about myself and how, why I see the world the way I do. It’s not always easy, sometimes it’s extraordinary. Social interactions are exhausting, even talking on the telephone, I need a lot of time alone to recover. If I’m not carefully managing my surroundings, taking regular breaks, and prepared with my coping strategies set to intervene at crucial times then it will lead to a shut down or melt down. I certainly don’t always get it right. Routines can become very intense and when I’m hyper focused, my basic needs can get forgotten about, leading to anxiety. My noise-cancelling headphones are a lifeline and have now become an extension of my ears. My brain constantly entertains and surprises me by what it can do, joining up pieces of random information and making my own connections between them, remembering whole conversations word for word. I see faces, repeated patterns and dogs in everyday objects, nature, materials, wallpapers, clouds. I have an unwavering need for the truth and justice, I feel emotions intensely. I’m wonderfully creative and my imagination is diverse and incredibly vivid.  

Small daily adjustments I have in place, finally understanding myself, talking to my family more and learning every day from other autistic people are fundamental in helping me to live a happier life, in a world, I know will always feel too much, but without question I am valid, I am worthy, I am autistic.  

Being Autistic and experiencing Dissociation…

I would like to share the main differences I have noticed between an Autistic shutdown and dissociation, from what I experience. Both can be terrifying, exhausting and I think appear quite similar from the outside, but for me, they have varying indicators and do feel very different. I will also include some coping strategies which seem to be helping me.
 
Autistic shutdown  
1. Being Autistic is who I am. 


2. During an Autistic shutdown I know where I am, who I am and who I am with. Even though, things have gone blank, my thoughts have paused, my brain is unresponsive, even when I am unable to talk very much and in need of lots of alone time, I’m still aware of my surroundings. 


3. I am getting better at preparing and coping with shutdowns (and meltdowns) understanding myself and what really triggers, upsets and makes things increasingly difficult has helped massively. Keeping a close eye on how much I’m exposed to those things, has also reduced anxiety, OCD and ultimately shutdowns altogether.  


4. Shutdowns for me, can potentially happen frequently (and definitely have in the past, without knowing what they were) especially if I’m not managing carefully what I am doing, what else is going on around me, and putting new found coping strategies in place. They last for varying times, but if I can intervene in time, they are greatly reduced or even occasionally stopped completely. The main trigger for me would be sensory overload, my earbuds are invaluable (see bottom of the page for a link to the ones I have). Sensory overwhelm quickly leads to distress. Overthinking is also a main starting point which can lead to a shutdown, it feels as though I have multiple tabs open in my brain and it’s definitely something I have to closely manage – my earbuds, alone time, napping, breathing exercises, low lighting, listening to music and ASMR / relaxation sounds are essential, at specific times, by taking the pressure off myself and accepting that I need this time, I have begun to pick up on my unique rhythm, a pattern of when I need to rest, recover and when I’m able to do more and focus. Particularly for anxiety, assessing situations according to how dangerous it is and how it physically makes me feel on a scale in my head really helps me regulate my mood before even entering that environment.

For example; 1 = Alone in my room (safe to stay) 10 = Burning building (get out now!) If I’m able and have the time to do this in most situations, especially if it’s new, with unfamiliar people, or I’m going somewhere I’m feeling particularly anxious about, then getting down to a 1, 2 or 3 is calming and normally has a positive impact on how I feel for the whole visit too. It’s not always possible, so I have to remind myself it’s ok if I don’t manage it every time, I can’t prepare for everything.


 
Dissociation  
1. Dissociation is a state of mind, which means it doesn’t last forever. 


2. Suddenly I have no idea where I am, nothing feels real. Things move in a very surreal slow-motion way. I don’t recognise or understand the people around me. I feel I need to get out, but have no idea where to go, I’m filled with panic but I can’t move. I don’t feel like me. I usually get very hot, sometimes can have palpitations and feel sick. 


3. Dissociation is very unpredictable; it hits me like I have just run into a wall. I also experience a plummeting feeling; deep dread consumes me. No warning, no preparation time, like a switch has been flicked in my brain and I’m left desolate. Overwhelming feelings of loss, loneliness and guilt take over, it can become unbearable to the point my skin feels itchy.


4. Dissociation for me happens quite infrequently, so even though it’s terrifying, can take varying times to recover from, I feel I can apply some rational thinking to it, knowing it’s not a big part of me, it’s a state my mind goes into due to being overwhelmed or triggered by trauma.  

I think for both Autistic shutdowns and dissociation, it can take years to learn coping strategies, or some things can start to click into place reasonably quickly. Finding what works best for you is important, because everyone has individual needs, we all learn and respond differently, but know it can be done, just at your own pace. I am not trying to simplify the process, it’s tough, often traumatising, takes time and may not always be successful due to different triggers, unexpected situations arising but I think it’s worth the time and hard work to eventually make things, even just a little easier.  

These have been a lifeline and the best gift! (I may have chosen them and researched which ones I would like for about a month!!) Anyway, if you’re looking for some earbuds to add to your life or as a gift, I recommend these! They are super comfy, easy to use, sound quality is amazing, noise cancelling is brilliant, and they aren’t ridiculously pricey!

(If you’re interested click on the picture below!)