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

IMG_2891I 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.

Blog Update

Welcome to my updated blog!

I’ve decided it was time for a change. When I started this blog, I chose the first name that resonated with me – ProudlyAutistic – and while it still does, I wanted to expand a little. Organised Chaos describes my life in general, and means I can broaden my post range. I’ll still be posting my autism posts, but I also want to venture out more into mental health posts, along with other ideas I’ve been having!

It’s the same blog, just with a different name, and perhaps a slightly different direction at times. Thanks for all your support so far,

Emma

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

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!