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.