A Somewhat Incoherent Ramble About Struggling

We all struggle sometimes – and that’s completely okay. To admit it, is in fact, even better. But that doesn’t make it easy to do so.

Things have been rough. My physical health is not great and, as always, it’s taken a toll on my mental health. Being hypersensitive to pain doesn’t help, either. It’s weird because this time of year is usually when my mental health gets better, but it’s got worse. I know it’s just stress. I’ve got a lot of assignments to do and everything’s become a bit too much. I walked out of college the other week as a way to try and cope, I’ve been getting home from college and laying in a dark room for a while, crying and melting down more often and I’ve ordered a weighted blanket to help me sleep better, if that’s any indication of how things have been going.

My biggest struggle at the moment is feeling that I’ll burnout again. It’s maybe my biggest fear. I can’t go back to feeling scared to leave the house and leaving my bed a couple of times a week. I’m not there. And I won’t let myself be there again. But it doesn’t change the fact I’m scared.

I think there’s something scary about admitting to struggling when you’re autistic. We’re often told that our lives are struggles and protesting against this becomes normal. It’s ridiculous but I fear that people will change their ideas about me if I say I’m struggling. Something about protesting that I don’t need curing and that I’m never going to be ‘normal’ makes me feel like I shouldn’t say that I’m struggling.

And that’s exactly why I should.

Being honest about this is important for me, but not just internally. Admitting to myself that I’m not doing well is difficult, but telling anyone else is harder and I wish it wasn’t. The stigma around mental health and autism is huge, and helps no one, and combining them together feels hard and scary to break. It’s not though. That’s why this post is shorter and less coherent than usual, but hopefully, I’ll be back on it soon.

I’m not completely okay, and that is completely okay.

Labels: Why They’re Great

Up until the age of 15, I didn’t like myself very much. I thought of myself as ‘awkward’ and ‘weird’ in a way I couldn’t explain. Physical appearance hadn’t overly bothered me throughout my life but who I was inside had. I’d always felt different to my brother and sister, but growing older meant I felt different to everyone. I desperately wanted not to care but from the age of thirteen onward I was researching everything I could. Like physical and mental health conditions, hoping something would apply to me and someone could tell me what on earth was going on. The answer hadn’t really crossed my mind. By when, in the diagnostic appointment, they said “we think you’re autistic”, I was beyond relieved.

I’m autistic, not ‘weird’. A simple word summing up my entire life was all I needed. I’m not limited by a word that has given me the chance to live a proper life again. I can make friends and go “I’m Emma and I’m autistic, ask me questions if you want, I’m just telling you who I am”. I can get a job, telling my future boss “I’m autistic, and I want to help people learn, especially people who’ve struggled with understanding the world like me” (true story!).  I can tell the world “I’m autistic and I couldn’t care less if you look down on me for that. If you want to look down on me, get out of my life.” Most of all, I can leave the house being me, flapping my arms and not caring, if I want to. I’m not hiding who I am, because the effort it took caused a burnout-breakdown I never want to see repeated.

Not only that, but saying “I’m autistic!” or “I have anxiety disorders!” are, to me, useful descriptors that tells you who I am in a concise way. It’s way easier to say “I’m autistic” than “I flap my hands sometimes, can have vicious meltdowns, can’t communicate brilliantly, don’t understand social norms and codes, am hypersensitive to pretty much everything and have only seemed to talk about Harry Potter for the past six years”.

There’s this idea that labels limit you. I’ve had conversations before where I’ve even been talking about how much I love labels, only to be told “but, you don’t want to limit yourself, you’re not just autistic.” Not only does my life revolve around being autistic (more on this in my Language: Identity vs Person post) but I love the fact I’m am who I am. Being autistic isn’t limiting, a lack of support is.

I didn’t have support for the first 15 years of my life, and I hated myself.  Having a label, and the access to support that it brings, helped me learn to love who I am. How – in anyway at all – is that limiting? I’m the happiest I’ve ever been in my life. And yes, to some people, labels seem ridiculous. They seem limiting and harsh and unnecessary. But I wear my labels like they’re my favourite clothes, and I’ve never felt more comfortable in my own skin.

A Guide To: Stimming

The flapping of hands, tapping of objects and biting things. The noises from the mouth, repetitive sounds and jumping up and down. These things tend to seem weird to neurotypicals, but for autistic people like me, they’re a fact of life. They – those behaviours that get glares and stares in public – are self-stimulatory behaviours, commonly know as stimming.

What is stimming?

The first – and probably most important – thing to cover in this post is what stimming actually is. If we’re going to be clinical, stimming is “Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).” That’s a quote from the common autism diagnostic criteria found within the DSM-5. Stimming is way more complicated than that though. To understand stimming, you can’t just hear one sentence, filled with medical terminology. You need to understand the seven senses, along with why we stim.

The Seven Senses

At perhaps the first opportunity in school, we’re taught the five sense:

  • Touch/Tactile
  • Taste/Gustation
  • Sight/Visual
  • Hearing/Auditory
  • Smell/Olfaction

All of these are important in understanding sensory experiences. I receive tactile stimulation from tapping, running fingers along silky fabrics and touching things. Eating smooth chocolate that slides down my throat and drinking tea at the perfect strength give me gustation input. Watching Christmas lights, snow falling and paint mixing provide me with the visual stimulation I need. I receive auditory input by listening to music at the perfect (fairly low) volume and repeating sounds and words just so I can hear them. I smell body sprays, and flowers and food to get olfaction input.

However, there are two more senses that are just as important. We don’t talk about them much, but we really need to. They are called the proprioceptive sense and the vestibular sense.

Proprioception is the sense of where your body is in the space it occupies, the way the body moves, the effort this takes and the force required to do so. My proprioceptive sense is some of what make makes me clumsy; I walk in to everything, misjudging doorways that have been in the house I’ve lived in my whole life, because I’m uncertain – on some level – about the space I occupy.

A lot of autistic people receive proprioceptive input in a similar way – weighted therapy. This is using heavy things – usually specially designed weighted blankets, lap pads or shoulder pads – to help calm down. They help the sympathetic nervous system – the system that determines your fight or flight response (the thing that causes meltdowns in autistic people). If your body is calm, so your heart rate isn’t racing and your blood isn’t pumping way too fast, it’s easier to calm yourself down mentally, to think things through carefully and work things out.

The last sense that needs mentioning is the vestibular sense. This also plays into my clumsiness; it’s to do with balance and movement. The vestibular system is responsible for me fall over at the slightest movement and plays into my somewhat poor motor skills. Vestibular input will come from activities such as rocking and flapping – anything to do with movement, really. This is why the majority of my stims at vestibular – clapping, flapping, rocking and jumping.

Stims aren’t limited to one sense, though. I could be clapping for the tactile input while also enjoying the auditory input.

Why Autistic People Stim

There are many reasons autistic people stim, but here, I’d say, are the top three:

  • To calm or sooth
  • To deal with emotions
  • To cope with sensory input

At the top of the list is calming and soothing. If you’re neurotypical, think of something you do when you’re stressed. You might come home and have a bath, read a book to relax or have a lie down. These things can clear your mind and help you deal with the future, whether that’s later on that day or the day after. Activities like these are forms of self-care and ways of coping with stressful situations. Stimming as self-regulation – soothing if you like – is just this, except it’s a solution in the moment. It’s a behaviour that can have this impact. It feels like a natural response.

Dealing with emotions is a very similar idea to calming – if you’re overloaded with emotion, you’ll want to calm down and thus use strategies. Stimming doesn’t always equal an emotion, it can be a passive activity, but I’d say it is quite often an emotional response. It’s similar to how you’d cry if you’re sad. The thing with autistic people – as I mentioned in this post – is that we have complex relationships with emotions. Whether this is alexithymia or just difficulty in reacting in a ‘typical’ way to a scenario, it’s clear we won’t react the same to neurotypicals if we don’t interpret emotions the same way.

Coping with sensory input comes down to the two common types (within neurodivergent people) of sensory experiences, that aren’t typical to neurotypicals. They’re called hypersensitivity and hyposensitivity. They look and sound similar, but they’re polar opposites. Hypersensitivity is being oversensitive to sensory stimuli while hyposensitivity is being under-sensitive to stimuli. Which category a person falls into can vary from sense to sense from day to day, and they may not even have a atypical sensory experience with a specific sense. I tend reside around hypersensitive for most part.

It’s not usually clean cut, someone is hypersensitive and someone is hyposensitive, but for the sake of simplicity, say it is. Person A is hypersensitive and person B is hyposensitive. Person A reacts to loud noises by trying to cover their ears and biting their hand in distress. They are trying to receive input in another way to calm them down. Noises are louder for them than most people around them, and even though their neurotypical friend says ‘it’s not that loud!’, it is to them. Meanwhile, Person B is in the same room. It doesn’t seem that loud to them, so they put on some headphones and listen to music loudly. They’re now receiving the input they need, so they flapping contentedly along to the music.

Like always, no autistic person is the same in this respect, but I hope this example illustrates how sensory input is linked to other senses and how reactions to it vary.

Self Injurious Behaviours in Stimming

For the most part, stimming is completely harmless and should not be stopped at all. If people are staring, it’s their problem. It’s not an embarrassing thing, it’s just a natural part of autistic life. However, if the stims are self injurious then they need to be replaced.

Self Injurious Behaviours – or SIBs – in stimming usually occur during meltdowns and what I said in my post, A Guide To: Meltdowns, still stands here. I talk there about redirection, changing the stim so it’s not harmful.

‘Headbanging on a hard floor or wall can be redirected to a pillow, which will obviously cause a lot less damage. For biting, chewable silicone can be a great substitute. It can be brought in a variety of toughness levels and is often found as jewellery as an on-the-go solution.  Long lasting lip balm, or moisturiser for skin, might helping with picking and having hair tied back are other solutions.’  – A Guide To: Meltdowns

Other than SIBs within stimming, no one and nothing should stop you. Stimming is a helpful coping mechanism that comes naturally to autistic people.


Thank you for reading this A Guide To post, I’ve been working on it for a few months now. I’d also like to thank everyone who’s been commenting on and sharing my posts – it means a lot and is helpful in reaching a wider audience!

A lot of this post came from knowledge I’ve acquired, but below are a few sources from which I’ve found some additional information that proved helpful to this post:

https://biologydictionary.net/sympathetic-nervous-system

https://www.ncbi.nlm.nih.gov/pubmed/23073629

http://vestibular.org/understanding-vestibular-disorder/human-balance-system

A Guide To: Meltdowns

Meltdowns are a huge part of life as an autistic person. They are often misunderstood, misinterpreted and cited as reasons that autistic people need curing or are childish. In reality, with the right understanding, meltdowns can be understood, remedied and even prevented. All you need is a comprehensive idea of what’s happening, and I think it’s safe to say I’ve got that. To achieve this knowledge, you need to look at a few things: what a meltdown actually is, the causes and triggers to aid future prevention, what can happen during a meltdown and finally, how to cope in the moment.

What a meltdown actually is (and what it isn’t)

I want to say meltdown is a response that autistic people have to a particularly distressing or overwhelming situations, but it feels like a huge oversimplification. During research for this post, I came across a definition that made so much sense to me. It’s not condensed in the way I thought it had to be, but I don’t think you can do that in this case. I found the definition on the autism wiki, and here it is:

Neurotypical and autistic people have the same fundamental response to stressors. When people recognize something as harmful, they become alarmed. Their brains and bodies secrete combinations of chemicals that people typically recognize as emotions. Those emotions, in turn, spur people to take action intended to face the threat. If these emotions are ignored, then they will build until they prompt the person experiencing them to fight or flee the threat.”  (Link)

The particular post then goes on to briefly mention that autistic people can face difficulties in identifying these emotions. This difficulty to identify and understand these emotions is called alexithymia, my post on which can be found here. Without this kind of internal understanding of emotions but feeling alerted to something harmful, I don’t think it’s surprising that we have meltdowns.

Another way to look at this is from the opposite perspective: what is a meltdown not? The easiest way to do this is to look at what it’s usually mistaken for – a tantrum. Tantrums have a goal, are done to illicit a reaction, are accomplished in a way to avoid physical injury and simply, the person is in control of themselves fully. A meltdown is pretty much the polar opposite, a sign of pure distress. I spent a long time not knowing that I’m autistic and even I mistook meltdowns for tantrums. I wondered what was wrong with me, why I couldn’t control myself. Now I understand more, I realise that it’s a natural fight-or-flight response, similar to that of a panic attack, really.

Additionally, there is another ‘type’ of meltdown called a shutdown. A shutdown is the same as a meltdown in the sense that it is a reaction to distress and they can be dealt with in a similar way. However, it’s a more inward reaction. Common things that happen during shutdowns are not being able to make sense of what’s going on, wanting to communicate but not being able to, staring straight ahead, not moving or responding and finding a place to be alone and lie down or curl up.

Causes and triggers

Learning personal causes and triggers can make life a lot easier, as it increases your likelihood of being able to prevent a meltdown. Causes and triggers vary from person to person so it’s best after a meltdown, whenever you feel ready, to look at the situation that caused it. For me, it tends to be a combination of factors that build up and up to the point where something that seems much less severe pushes me into having a meltdown. Here is a list of some common triggers and why they might be overwhelming:

  • Sensory issues –   over or under sensitivity can be very distressing for an autistic person. Being oversensitive means that seemingly quiet noises and lights that aren’t too bright to a neurotypical person could be overwhelming to the point of triggering the fight-or-flight response. I can’t speak from personal experience about being strongly hyposensitive, but I think it’s a similar experience but in reverse.
  • Changing routines, or at least what is expected –  These changes can vary in size, from changing an entire day’s plans for whatever reason to changing the order an autistic person gets ready in the morning, but they can be equally distressing.
  • Communication difficulties – if an autistic person cannot communicate their feelings aloud or are being misunderstood when they communicate in the way that feels comfortable (verbally or not) can cause frustration that ends up triggering a meltdown.
  • Anxiety – these can cover both anxiety disorders, something fairly common with autistic people, and the feeling of anxiety. Again, it’s a case of not being able to deal with what’s going on.
  • Passing as neurotypical – also called suppressing autistic traits, this is where so much energy goes into not behaving in a way that feels natural, often to avoid uncomfortable responses or bullying. It’s exhausting, and being exhausted is so likely to lead to meltdown, because the resources to deal with it are naturally depleted.
  • Illness – being ill is horrible for both the mind and body. Dealing with pain – in relation to sensitivity to it – or the feeling of everything being different to normal are just a couple of reasons why being ill can lead to more meltdowns.

Knowing that these are causes means that it’s possible to deal with these specific issues in the future before they escalate to the point of meltdown. This could mean bringing ear defenders everywhere to ensure if it gets too loud, there is a way to cope or allowing time away from people to act as autistic as possible or preparing in advance for potential changes.

And it’s all trial and error. You might find that one communication method makes things worse or a certain type of sensory equipment isn’t right for you. It’s all about working things out as you go along, but having a starting point, for example a personalised list of things you want to try, is important. When you find things that work – keep them, and use them again and again.

What can happen during a meltdown

The behaviours that occur during a meltdown can be difficult to actually explain. I’ve seen them described as a range of things including “extreme”, “dangerous” and “repetitive”.

By “extreme”, I think people mean that the behaviour can look that way to an outsider. Again, meltdowns are often confused with tantrums thus we do see similar behaviours involved. Meltdowns are a personal experience but some common behaviours seen during them are:

  • Kicking
  • Screaming
  • Shouting
  • Biting
  • Crying

The repetitive part presumable refers to stimming, the self regulatory behaviours autistic people use to cope with the world around them. Most of this stimming is harmless but some of it falls under the category of an SIB – self-injurous behaviour. I struggle with head-banging, hand biting, hair pulling, skin picking (involving my lips mainly), aggressive jaw grinding and arm scratching. During a meltdown my brain is overwhelmed and cannot make sense of my surroundings. This means my awareness of safety is reduced greatly and I do harmful things without thinking about the impact.

Self-injurious behaviour during meltdown is not the case for everyone, but it’s not uncommon, either. A way to overcome this is to find tools for redirection and try to put them in a place they’ll be useful. Headbanging on a hard floor or wall can be redirected to a pillow, which will obviously cause a lot less damage. For biting, chewable silicone can be a great substitute. It can be brought in a variety of toughness levels and is often found as jewellery as an on-the-go solution.  Long lasting lip balm, or moisturiser for skin, might helping with picking and having hair tied back are other solutions. Overall, redirection is time-consuming and difficult, so reducing meltdowns through the identification of triggers is probably more effective in the long run. However, redirection will reduce the damage done by individual meltdowns.

There is a raw and personal account of a meltdown from blogger Cynthia Kim, which brilliantly shows the confusion and difficulties experienced during meltdowns. It can be found here.

How to cope in the moment

Coping in the moment is actually incredibly difficult. I think the first step is knowing that it’s okay, and that nothing’s wrong with you. Having this knowledge, for me, was important in terms of personal acceptance. It made me realise that if a meltdown has started, don’t try and stop it, just ride it out as safely as possible. How to cope can be split into two categories: coping as an autistic person and helping an autistic person cope. Here are some strategies for both:

Coping as an autistic person:

  •  Try calming stims – flapping, rocking – whatever works for you.
  • Find a place with the right sensory environment for you – it might be a dark, quiet room you can lie down in.
  • Listen to some music, it doesn’t have to be traditionally calming – once again, whatever works for you.
  • Do something related to a special interest – reading, writing, drawing, talking.
  • Try to breath regularly, especially if you’re crying.
  • Use deep pressure, a weighted blanket if you have one.
  • Afterwards, have a shower/bath, a drink, a snack and sleep for a while if you need to.

Helping an autistic person cope:

  • Their verbal communication might be reduced, if you need to communicate, ask simple yes or no questions to which a nod or shake of the head can be the answer – “Can I touch you?”, “Would you like to go to a different room?”, “Would you like me to leave you alone?”, “Would you like me to get you anything?”
  • Don’t physically restrain them. The fight-or-flight response is triggered and they may fight without intending to.
  • Offer solutions to harmful stims, for example, give them a pillow to bang their head on.
  • Try to find somewhere else to go if it happens in public – a quiet room is best.
  • Remain calm. They might be shouting and screaming but they don’t mean to. It’s a natural response and being surrounded by someone who is calm might help them feel calm quicker.
  • Try to help with things like calm breathing, but if this makes the autistic person more distressed, stop and try something else.
  • Afterwards, discuss what happened and how to avoid it in the future, but don’t push the conversation until they are ready. The actual meltdown can be traumatic or embarrassing and might take a while to be discussed without distress.

So that’s my guide to meltdowns! It’s one of my longer posts, but an important one, I think. Thank you for reading it, and I hope it’s helpful. You can follow this blog via a wordpress account or email to be informed when I’ve published a new post. I’m hoping to be doing this weekly with Sundays being the day where I publish them. Thank you for reading and supporting this blog.

Meltdown Memory

It’s a simple image, grandparents surround by their grandchildren. It’s a family celebration of their golden wedding anniversary, and part of that is taking photos outside of their house; everyone is dressed up nicely in new clothes, most likely brought for the special occasion. The oldest, and thus tallest, grandchildren stand at the back, while the two youngest stand one either side of the sitting-down grandparents. Everyone is smiling, including the girl to the right. However, she has blotchy cheeks as she does so. Her smile is not quite as genuine as the others, even though she’s delighted to be there. She’s been crying but hopes it doesn’t show. The girl to the right is me.
It’s lovely to stay with – or near by – my grandparents, their house has always seemed to be a happy place for me. I’ll never forget, nor fully lose, the excitement associated with the early morning get-up to visit them. Admittedly, it’s the only time I willingly get up before 7am. There’s memories of dressing up with the special dressing up clothes, kept in pink cardboard chest in my grandparents bedroom, or playing shops with the set of small cardboard boxes and plastic tins, using the plastic shopping basket they were kept in. As I’ve got older, the memories are more of interesting conversations with Grandpa and height jokes with Nan. Memories extend further than this, though, as most surfaces and walls hold pictures frames, displaying other memories. These range from school photos of us grandchildren and graduation pictures of both children and grandchildren to holidays in a variety of locations and or important birthdays. And, of course, among them is the golden wedding anniversary picture.

I remember it surprisingly well, but then again, I often do with days like this. I’m fairly certain that we – my mum, dad, brother, sister and I – were staying with my auntie, although there’s a chance we were at a hotel. This time is not quite as clear as later on that day would become. We’d gotten dressed up into our nice clothes and headed to our grandparent’s house. There, we chatted a little, before preparing for pictures. It was just before we would begin taking them that I realised something: I’d forgotten my jewellery.

I was only eight, and the jewellery was not impressive nor important. I believe it was a necklace with my name on that a friend had brought me from her holidays, and possibility a bracelet too. It wasn’t important but it distressed me in a way that’s difficult to explain to neurotypicals. I was supposed to wear it. I’d packed it for the reason of wearing it. It then felt wrong without it. It then began: the meltdown.

I didn’t have a word for it at the time, and to everyone – including myself – it seemed like a childish tantrum. It’s important to distinguish that it wasn’t. I’ll go more into this is the next post I have planned, set to work on the informative side of this but for now, here are the simple differences: it didn’t have a purpose, I wasn’t looking for a reaction, I wasn’t trying to communicate something I wanted. I was distress by the situation not being as I expected.

Looking back, it seems small. I have meltdowns quite a lot, I always have, but they’re normally over larger things than forgetting something, unless things have been getting to me. Maybe the noise of everyone greeting each other, the social event, the eye contact I was making or the difference in routine contributed in some way? Maybe it’d been things from weeks ago that I’d pushed down that resurfaced? Maybe I wasn’t fully physically well, making me more vulnerable to such a meltdown? Maybe I was still adjusting to the first-time-ever-worn clothes? Or maybe it was simply the necklace and the necklace alone.

Whatever caused it, I vividly remember having a meltdown in my grandparents back bedroom. I remember a lot of tears, difficulty breathing and general confusion. Again, something I plan to go into next time, but I can only describe it briefly as being in the sea, trying to swim but the waves are too harsh so you give up. It’s hard to focus on what is actually around you, the creatures you might see or the brilliant day it is, because you’re dealing other things.

I can almost hear my mum reassuring me that it’d be okay, to no avail. At the worst point in a meltdown, I can’t be calmed. You’ve got to ride the waves with me for a while, before we begin to swim again. My cousin came in, a couple of minutes later, kindly offering me her necklace, but I declined. It didn’t change the fact I’d forgotten my own. Again, float before you swim.

When the height of it all passed and things began to get better, a level of panic set in. Cue the next stage of the meltdown: desperately trying not to cry because you’re worried of how the blotchy face will show in the pictures, but crying seeming like the only way to deal with the anguish caused by the situation.

I think, more easily consoled this time around, my mum dusted a little powder onto my face to reduce the redness, while she reassured me that I didn’t need a necklace, it probably wouldn’t be noticed in the pictures anyway. The same with my red face. To be fair, it isn’t that noticeable, but photos, for me, have always vividly triggered memories. Combined with the fact meltdowns have always remained in my mind, more vivid than photos maybe, mean I remember it clearly.

The rest of the day, once again, falls into the realm of a blur. Nothing is quite as prominent as the meltdown, but I’m sure I loved the time spent there, as it was time spent with my grandparents and family.
This post is something that’s been playing on my mind recently, and as I mentioned, I hope to create more informative follow-up. It’s a reflection for me, part of collection of them I’m beginning to post, on autism things that I didn’t know had a name at the time.

Finally, I’d like to thank my wonderful Nan and Grandpa for supporting me through everything and accepting me for who I am. If you end up reading this, I hope you remember how wonderful you are (and how short you are, Nan, not that I’d ever let you forget!)