Positive Reflections on Hard Times

My sister is three years younger than me and she’s just begun the school year that I was in when things really went downhill for my mental health. It’s one of the many things at the moment that is making me really reflect on the times I went through when I was her age.

It’s been weird the way I think about it. Having left school a year ago and so many things happening inbetween has given me a huge deal of distance between myself now and my breakdown. For the first time in a year, I’ve spent the summer not having at least a while every single day where I think about my breakdown – those days I didn’t get up, the anxiety that physically hurt me and the mind set that it was all fine. But when I do think about it now, it doesn’t hurt so much.

For a short time, I was internally angry with myself for having a mental breakdown, which is ridiculous. But it still happened. I was angry that I didn’t do as well as I could have done at school, I was angry that those years felt wasted and I was angry about the impact I’d had on my family. It is ridiculous for so many reasons, I can’t do anything to change it now. The most prominent reason, though, is that I wouldn’t be here – as happy as I am about everything in my life – today.

My mum always says “everything happens for a reason” and I think everyone is guilty of just saying “yes, mum” to things like that and moving on. After nearly 18 years, I’m not sure why I don’t listen to her all the time because she really is always right.

If I hadn’t had my breakdown and burnout, I would probably still be so unsure of myself, having meltdowns and hating myself for them instead of understanding, letting them happen and moving on. I’d still be autistic – like I was for nearly 16 years – without that diagnosis, I just wouldn’t know. I don’t think I’d like myself or have confidence in myself, nearly as much as I do now. I wouldn’t be able to have or appreciate the happiness I have today without having those terrible lows of the past. I probably wouldn’t have a job that I enjoy and love, I wouldn’t be making plans that typical teenagers make to go out like I am now, I wouldn’t have my wonderful friend who supports me and likes me for who I am, I wouldn’t be less scared to give things a go and have new experiences – I wouldn’t be the me that I am today.

Those years, while horrible at the time, created the person that I am today and honestly, I’d rather have a few horrible years as a teenager with the rest of my life in front of me than anything else. I know who I am, I like who I am and while I’m not happy I had those difficult years, I appreciate that they made me who I am.

My Complicated Relationship With Food

Like many autistic people, my relationship with food has been strained at best. It starts with the small amount of generally plain food that I eat, ensuring they do not touch on the plate and extends to the time where I was only eating maybe two meals a day, if I was lucky. Food, of course, goes on to influence body image and I’ve been thinking about it a lot recently. They’re so intrinsically linked with both each other, but also mental health.

So let’s start at the beginning – I’ve always been a ‘fussy’ eater. I think it’s easier when you’re a kid and you go out to eat because every menu had chicken nuggets and chips. As a kid without a diagnosis, you’re a fussy eater and it’s not worth trying new things. I’m not saying anyone is to blame for this, just that it’s not worth the meltdown-that-wasn’t-known-as-a-meltdown for anyone involved.

It wasn’t until I went on brownie holidays and school residential trips that I began to hate food. At home, it was fine. Not a problem, my mum would cook food I liked. But I distinctly remember a trip when I was about 8. It was a brownie camp where I’d been okay with food, finding something to eat from the limited choice that I could just about feel comfortable eating at every meal. Except this one lunch time. It smelt too bad in the canteen area where all of the options were just not in my small realm of foods I liked – the smells were overpowering and was simply not going to find something new. I diverted out of the queue and went to the salad bar, sitting down when my brownie leaders and the people from the camp came over. Obviously, they were concerned I was not eating enough but I insisted I did not want the full meal. They got me another salad that was bigger and multiple slices of bread. I understand, now, why they did it, but at the time – as an autistic person with no diagnosis and not even a vague idea of my identity – I despised it. I was trying not to cry, because I didn’t even like the bread or salad much, I just wanted to get through to dinner time. Every mouthful felt like a huge lump in my throat that made me feel gradually sicker. I’m sure I threw out the ‘I don’t feel well’ excuse about not wanting a full meal. It wouldn’t be the first time. I was desperate to finish up but when I’m not a huge fan of a food, I can only stomach the smallest amount at a time. I was so slow, that I missed the whole lunch break to talk to my friends and almost missed the afternoon activities.

From then on, I had a huge fear of food on school trips and other times I was away from my parents. I’d enjoy the day until meal time, where I would freeze and sincerely hope I’d either like the food or be able to sneak away with only eating the smallest amount. It wasn’t like I had the diagnosis to be able to say ‘Emma’s relationship with food is different, don’t worry if she doesn’t eat’. It was awkward. On a later trip, I distinctly remember saying what, at the time, I thought was a lie to a nosy classmate who asked why I didn’t eat much, I said “I’m just sensitive to tastes and smells.” It’s true, though. Every trip in secondary school consisted of a suitcase of foods I could eat after sneaking away from the dining area, but at primary school this wasn’t really an option. I hated feeling like I was breaking the rules when I ran away without eating anything but it was the only option I had.

To bookend one of my first trips away with the last, we had the final school trip I went on. This was when I wasn’t eating much on a daily basis anyway, more on those mental health issues later, so my mum and I organised a meeting with the teacher leading the trip. I got my mum to emphasise “Emma doesn’t eat much – don’t force her to!” I was less concerned with food then, and enjoyed the trip more as a result. No one was watching me eating, frowning thinking I should eat more. To be honest, three small meals a day was a vast improvement. Although, I did have to stop eating bread rolls for a while, as dry rolls were the only food I really liked there.

Even on regular days, lunchtime was a battle. If you’re at school, you eat sandwiches, right? I didn’t. The combination of textures was a huge no from me, and even these days I don’t really eat sandwiches. I used to dream of being allowed home at lunchtime to have beans on toast or crumpets – any food that I liked. Another problem is that when you eat such a small range of foods, you can get bored before too long. After three weeks solid of dry pita breads, you want something else. So I’d have crackers, but then I’d get bored. The extremes that I think make up autism, to be honest. One way or other. Only eating or entirely bored of eating it.

Like I said, at home I was fine with food. Eating out became trickier because for some unknown reason, in adult meals, they decide to put things on top of each other and add a lot of unnecessary extras. Maybe that’s just me, though. Eating out was an experience in itself. It had to be a restaurant I knew, ordering myself was impossible and if the item I wanted was in a different place on the menu? No chance of a successful evening out. I don’t think people realise how prevalent food is in your life unless you have issues with it.

In the middle of my burnout and significant mental health issues, I wouldn’t eat. It’s not necessarily that I didn’t want to, but I’d forget to or not have the energy to get it. Put it this way: if you can’t get yourself out of bed, food isn’t on your mind. So I spent many days in bed until 4 or 5 pm, having not eaten since the previous evening but not being able to process anything but the fear I had of the world correctly, so the feeling of hunger just wasn’t decipherable. Eating a child-size meal was probably a push sometimes, and it – like the rest of my mental health – had been a downwards spiral for years in the making. My relationship with food was just the most disordered it has ever been. Put the generally autistic I-don’t-eat-many-foods issue on top of a lack of energy to do anything but be anxious and you get a scenario of food being hell. I didn’t even know if I wanted to eat, let alone what.

Naturally, I lost quite a bit of weight and was painfully skinny in areas. My hip bones jutted out of my body so much they looked sharp and my rib cage was pretty much on view. When I got dressed, I drowned myself in big, baggy t-shirts and plain, dark colours that would not draw attention to myself. I’m pale as it is, but not leaving the house left me looking like a ghost, something helped by my permanently anxious expression.  There was never a moment where I looked in the mirror and realised how skinny I was, I didn’t have the energy for that. My body had become an unknowing metaphor of my mental state so much so that I didn’t even look in the mirror to find out. My body was not well cared for, inside or out.

I disappeared from pictures for quite a while. Those that do contain me show just my head and most have a smile that barely reaches the eyes, if one at all. I don’t look happy or comfortable in who I am at all and honestly I didn’t feel it. It’s not until recently that I’m at a comfortable weight and wearing clothes that don’t attempt to hide everything about me. I’ve never been super self-conscious about my body but clearly I had been enough so that I tried to hide.

My relationship with food can still be tricky. I remember to eat these days but I still despise the smells of some foods. If they’re cooked in the house, I get a warning and disappear into my bedroom, smelling the strawberry hand cream that covers my hands. I despise sauces – liquids and solids generally are a terrible mix – and my realm of food is still pretty small. Nevertheless, I feel that I have control over my relationship with food. I don’t like it? I won’t eat it. I feel up to trying something new? Go for it, but don’t push your limits. Food is so

much less complex as I’m becoming am adult. Yes, restaurants are still awkward, but I can usually find something – even if it’s just a side order. And the people important to me know my limits. They’re not going to make me eat food I don’t want to. My autistic relationship with food is very much there, but my mental health relationship with food is a lot better.

And this is me yesterday. Happy and healthy yesterday and the place associated with my longest standing special interest, having been out for food earlier that day and about to try something new.

Happiness

Yesterday, I was in the car with my mum, dad and sister. We were discussing all sorts of things and my sister brought up a lot of questions to my Mum and Dad about the who was the best behaved child and other random memories. We were discussing something that I can’t even remember, a memory that we were trying to place in the history of our lives. I threw out an age, “Was I about 14?”, and her response was profound and honest – “No, it was when you were happy.”

It got my mind back onto something I’ve been thinking about for a long time – the idea that I’m the happiest I’ve ever been. I can’t recall so many days where I wake up feeling okay and when I don’t, it doesn’t knock me back for weeks. I don’t recall so genuinely content with my life and having legitimate aspirations I can try to achieve. My life isn’t completely ruled by my anxiety but I also know my limits , I know when to push that anxiety and when to leave it. Sitting here writing this I just feel happy. I’ve got the highest grade ever achieved on my college work, I’ve got a job – a fulfilling job that makes me excited to leave the house, and I’ve looked around a University and cannot wait to think about my future there.

I’m genuinely so content that happiness is a realistic possibility everyday. I actually want to leave the house and find myself going crazy if I haven’t left the house before work at 3 o’clock. Now I’ve finished college for the year, I’ve started teaching myself further science because my love of learning is back. I’m comfortable with who I am and I don’t want to hide it, whether that’s emotionally, physically or autistically.

And being so happy just reminds me how grateful I am. Grateful to my family, grateful to my friends, grateful to the medication I take. Grateful that I can live life again when making informed decisions based off my neurotype and my mental health. It’s weird to think that I was so gradually unhappy, but I only noticed it when I experienced the biggest amount of happiness. And that’s why I’m grateful. You can never put things into perspective until you experience something else, and I’m just so glad I can experience this happiness because it means that I will never go back to where it was. It’s too much to lose.

 

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.

The Best Advice I’ve Ever Recieved

Social anxiety has been a part of my life for a really long time. Those constant flashbacks to times I said stupid things that make me want to hide forever. The way I’ve sounded like Siri going wrong when I haven’t known what to say. And that the perpetual fear of social situations, that grew to meaning I didn’t want to go anywhere with people. Those were just facts of life.
These days, I take an antidepressant that helps me feel incredibly neutral. From there, I can have emotions that seem more relative to the individual situation. I don’t lie awake at night thinking about the stupid things I said that day, although that’s probably helped by the sleeping medication. I don’t fear people in general because I know that they will talk at some point in our interaction. Overall, being on that medication has changed my life.
Something else, however, has also made a massive difference to my life. Interestingly enough, it wasn’t therapy or a meeting with a psychiatrist. It was one of the many conversations I had with my former school support worker.
She, in all honesty, it’s probably the reason I’m here today as the person that I am. She listened to everything I had to say and took it on board, finding solutions to every problem I had and helping me at the lowest point in my life. She did so much for me that I still think of the way she did things, the way she help me and the things that she said that have made such a difference to my life.
In one of the long conversations that we had discussing everything about my life, diagnosis and problems I encountered she said something that seems to have changed my life. I was telling her how I found people so confusing and how my social anxiety just made me feel so awkward to the point where I hated every word that came out with mouth. Despite the negativity, I believe I mentioned something about my mind racing and forgetting everything I planned to say, every time I tried to talk. Her response changed everything.
She said “It doesn’t matter if you take a moment to breathe and think about what you’re going to say. No one’s going to make fun of you, in fact you’re just proving that you’re thinking through what you’re saying in an intelligent way. It’s a positive thing.”
I’m not exaggerating when I say that this changed everything. The first day of college I was trying to make friends and I was scared about what to say – everything in my mind went blank, so I paused. After a breath, a whole possibility of things to say swirled around in my mind. I chose one and the conversation moved on. In my job interview I was asked a question that made my mind go completely blank, so I paused. The words came back to me and I took a breath. I found something to say that didn’t make me feel like I was being ridiculous, it made me feel confident in the words that I would say. I could probably even go as far as saying that it helped me get the job.
I will never diminish the impact that the medication I take has had on the way I can communicate with the world around me without feeling like I hate myself. But I know it’s not just the medication. Sometimes, words of simple reassurance and basic advice can change the way someone thinks, and in turn, their life.

My Sensory Box

I have a box that resides in a drawer. It’s my last stop before leaving the house on a rough sensory day. It’s my first stop when I find my hands itching to fiddle or messing with something that could be more dangerous. It contains things to occupy my hands, pretty colours to colours look at and earplugs for the louder days. Perhaps it is is best described as a coping mechanism. For those days when everything is too much or not enough, and every kind of sensory input is wrong. Or just for the days when I need the passively stim. It sometimes comes in the form of a black make-up bag when I’m on the go – but mainly, it is my sensory box.

Stimming is such a natural part of life as an autistic person and stim toys are tools that help me slim differently. Sometimes they actually things designed to help me, and sometimes their objects are required over the past few years that have helped me anyway.

Tangles are one of my favourite in toys that exists. In the picture at the top of this post there are three, technically four. They are the chains of plastic that make a great tools to fiddle with. The pink, blue, yellow and clear coloured one is textured on the outside, which helps me out on days when I’m more prone to scratching. They provide a tougher form of sensory input that’s not dangerous at all. The blue, yellow, green and clear one is also texted that I’ve got more of a squishy outer coating that provides a drastically different but also great kind of input. The metallic pink one is closer to the standard kind of tango, as it is smooth all over. Lastly, the deep blue chain in the picture is made up of tangle parts, I find it good to loop around my finger and stim with. As stim toys go, tangles about very discreet and pretty commonplace. There’s a reason I’ve got so many!

Chewellery – or chewable jewellery – is also a major important thing for me. It stops me grinding my teeth and biting things like the caps of pens and sometimes my hands. They’re made of food grade silicone, which means they’re safe to chew. The picture shows two of them- I have two identical dulcimer pendants from the amazing stim toy shop stimtastic. The pendants are designed for lighter chewers, and as my chewing has become a little more aggressive, I use two at once. They’re a little bit more of a discreet way to chew than other chewable items, and so far no one’s really questioned me on it.

Those are probably my most used sensory tools, but the picture shows a lot more. I have the somewhat universally recognised fidget cube (which is now looking a little bit dirty from its use), a smiley popper toy that’s good for some resistance, a toy that I have no idea what it’s called but it’s basically a bit of purple mesh with marble inside, a couple of different spiky things that can be pulled instead of my hair, ear plugs for when things get too loud and a couple of other bits too.

And there we have my sensory toys and tools that I use to cope with tough sensory days and they need to passively stim. Hopefully by the time you’re reading this, it’s April and marks the beginning of my (hopefully) two monthly posts. I’m going to try and post a little more regularly about a variety of things, let’s hope I can stick to it this time!

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.

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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

Moving On: The Light at the End of the Tunnel

In September, I made the most significant choice of my life so far – I began college. For my international readers, this is an alternative choice for the two years at school, where different courses are offered to the exam-based ones found at school. I’d found a course that I was so excited to begin, a BTEC Level 3 Extended Diploma in Applied Science (Forensics), with the Level 2 version as a back up if my GCSEs didn’t go to well. Fortunately, they did! I finished school with all As and Bs, which, considering I wasn’t in school much but put a lot of work in, isn’t too bad.

So, I was ready to begin. I’d had a support worker already in place – something that my diagnosis allowed me easy access to – and had toured around the college a few times, to get a feel of it. I remember on one of these tours, a tutor – who teaches me now – asked if I was looking forward to the course. I answered that I definitely was. She then asked if I was looking forward to making new friends. I paused for a moment, unsure, and simply replied “I’m not too sure that’ll happen”. She assured me it would, and I have to say she was right!

On the first day, I was scared but excited. I was away from school, and it was all I could have wanted, but I also didn’t want to be alone. By the break, however, I’d managed to make three friends, something that shocked me quite a bit. I’d felt alone throughout school, feeling like I was an outsider and, towards the end, the person who only seemed to receive comments of “Oh my god, you’re actually alive?” when I felt okay enough to attend lessons. But at college, everyone was new. Standing there in my Harry Potter top, being open about who I am – including having anxiety and being autistic – I made friends who were fine with it. It was the first time I’d gone into friendships knowing who I was and saying it from the start. It’s another one of the times that makes me so glad for my diagnosis.

I have friends who like the same things as me, at times are as ridiculous as me. Friends who are happy to go and get piercings with me. Friends who are comfortable with who I am, making me more comfortable with who I am.

Over two months after starting college, the change in me is quite incredible. I’m looking into university as a serious possibility at the end of my two year course, while also knowing my boundaries in that respect, and not looking at universities too far away from home. I’m considering learning to drive and looking at places I might be able to work in the future. I’m able to rationalise anxiety that’s normal and anxiety that’s not. I’m able to get myself out of bed and get myself ready for the day, without needing everything talked through. I’m the most independent I’ve ever been – I’m fine with leaving the house alone these days, while also taking my family up on the offer to go out with them when it’s there.

This isn’t to say I’m fine the whole time – there has been shutdowns, stress and difficulty with understanding the world around me. Those things aren’t ever going to change – I’m autistic, it’s who I am. I’m more able to deal with it, though, because the environment is different. As my mum – a teacher – always says ‘School is a place where square pegs are expected to fit in round holes’ and what we’ve noticed is that college is not that. There’s so much less fitting in, less ‘you must sit here now, still and quiet, but move in exactly one hour’ (even if that’s when you’ve just about got settled), less pressure to be who you’ve been for the last five years. It’s a fresh start and one that’s changed my life.

This, however, isn’t just an update about me. It’s my offer of guidance, in a way. I know quite a few people have read this blog and got in touch with my mum, realising the situation applies to their family members. I want to stress that there are options, ways to make things easier while school is still compulsory and there are people who’ve been through it all before (like myself!). For this reason, I want to remind people that you can comment on my posts or email me directly ( at proudlyautisticblogger@outlook.com) if any of this resonates with you. My experience with school and the difficulties it brought along were awful in some ways, but if I can take anything positive from it, and use it to help others, I’d be happy to.

I’m also looking to make some more ‘A Guide To:’ posts, but they require a lot of fact-checking and time, so they’re entirely dependant on my college workload. I’m hoping to write some shorter posts, like these and memory posts, while those are in the works. Thank you to everyone who’s been reading, commenting on and sharing this blog – it means a lot!

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.

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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.