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.

Ableism and Autism

I’ve been writing a lot of posts recently but within each post I get to a point where I stop and pause. There’s one topic that reoccurs within discussions about autism and I’ve not felt ready to go into it fully. I think it’s finally time I do, however, so here it is: my post on ableism.

Ableism is simply discrimination in favour of abled people. Strangely enough, though, we don’t see it discussed and portrayed in the same way things like racism, sexism and homophobia are. This isn’t to say that ableism needs more attention because it’s worse, just that it’s so erased that many people don’t even know that it has a name. “Racism for disabled people” is one of the one’s I’ve heard a lot.  As I said in a previous post, autism is described as a neurodevelopmental disability, thus prejudice and discrimination against autistic people falls into the category of ableism. Obviously, ableism is something that many different disabled people face but as I am an autistic person with no other disabilities, I can only talk about it from my own viewpoints and the viewpoints of those within the autistic community.

Ableism doesn’t just come in the form of bullying, although that is something a lot of autistic people face. Part of ableism is the names we’re called by other people for not processing something quickly or stimming in public, but it spreads a lot further than that. Ableism isn’t just the “you can’t play with us because you flap your hands” comments we see on the playground. It spreads a lot deeper than that, even into the language some people use on a daily basis on issues surrounding autism and autistic people because they think it is acceptable.

Functioning Labels

A key example of this normalised ableism that everyone has heard of is functioning labels. This is when autistic people are divided into high functioning and low functioning. Functioning labels are inherently flawed for many reasons, but largely due to the fact they’re unrealistic and somewhat ridiculous. These flaws can be summed up in one simple tweet that I’ve found:

Image result for functioning labels tweet
Credit: Ellen Murray’s Twitter

I’ve heard and seen so many conversations, online and in real life, that use these labels, so much so that I can confirm this tweet is correct. I remember seeing a post, not too long after a diagnosis was suggested to me, from a girl who was very annoyed at autistic people on the internet accepting themselves because her brother had what she called ‘real autism’ – he was what she considered ‘low-functioning’, and these ‘high functioning’ people on the internet didn’t understand the struggles her brother faced. This girl was not a professional, but we see this in professional communities as well. I’ve been told, from a simple glance, that I couldn’t be autistic because I didn’t seem autistic. I’ve heard ‘you’re a pretty and intelligent young girl’ as reasoning more than enough times – “used to deny support”.

Just because I didn’t fit the media-influenced idea of autistic people – a young boy with headphones who doesn’t make eye contact and cannot verbally communicate- I was one of two things: 1) not autistic or 2) high functioning. The amount of people you can find online who’ve plucked up the courage to tell people that they’re autistic – putting themselves at the risk of verbal, ableist abuse – who get the response “oh so you must be high functioning” is ridiculous. What’s more ridiculous is how this is seen as a compliment. How is it a compliment that you’re detaching that person from people just like them because they don’t quite fit your stereotype?

On the other end of this, we see people who are ‘low functioning’. One of the – many – problems with functioning labels is that there so subjective. Who fits into what category? A seemingly common opinion is that those who can’t communicate verbally nor take care of themselves to a neurotypical standard are ‘low functioning’ and it’s ridiculous. I’ve seen the ableism here as well. Non-speaking doesn’t mean unworthy of a voice, not at all, and someone who has a far better perspective of this than I do is Amy Sequenzia, a multiple disabled, non-speaking advocate who can be found here.

The easiest way to put it is that we’re all autistic and fortunately some people in the medical community are listening. A common diagnostic criteria, the DSM-5, removed things like “Pervasive Development Disorders”, “Asperger’s Syndrome” or “Autism Disorder” using “Autistic Spectrum Disorder” instead. It has been argued – and I must say I agree – that “Classic” autism and “Asperger’s” aren’t far from functioning labels at all. They’re used to distance autistic people from each other, and put us into boxes that aren’t there.

I’m about to ruin this idea of a linear spectrum that we can find all over the internet and in real life. I would like to clarify that this:

spectrum

is not the autistic spectrum. This is ableism. 

Functioning labels are a construct used to divide autistic communities, not a scientific fact. There is no such thing as ‘severe’ and ‘mild’ in the same way that ‘high’ and ‘low functioning’ don’t exist.

The autistic spectrum is a circle. Sometimes I have executive dysfunction – where I physically cannot plan out the steps for

Image result for autism spectrum
Credit: Rebecca Burgess’ comic, found here

a task and complete it (something I do plan to talk about at some point) and sometime my executive functioning is wonderful! Sometime you will not be able to make me shut up, and others I’m completely non-verbal.  Sometime I remember to eat, and other I don’t. It’s a spectrum that varies from person-to-person, day-to-day.

Functioning labels are just a day-to-day, seemingly accepted form of ableism. They’re not labels autistic people came up with, they’re things that oversimplify a complex neurological variation and have no real definition.

Autistic people are promoting positivity as a response. Yes, I have meltdowns, struggle with things neurotypical people can do and experience sensory overload but that doesn’t mean autism is a negative thing. Somethings are are struggle but that doesn’t mean I should be denied the self love I’ve spent years working on.

Cure Culture and Awareness

Unfortunately, there are so many more forms of ableism I see in regards to autistic people. One is cure culture. I touched on this in my language preference post, where I discussed how an accepting society is what creates issues for disabled people. Basically, because we – disabled people – struggle, we should be cured. Because we need accommodations, we deserve a cure. I don’t want to be cured because if you take away everything that makes me autistic, I’m not me. If you help me thrive as an autistic person, I’m me, without the struggles. As I said in my Language: Identity vs Person post, “If I were to take away her [my sister’s] sensory experiences and subsequent responses, her likes and dislikes, her routines (or lack thereof), the way she moves, the way she thinks, how she communicates and how she acts socially, she wouldn’t be my sister. She wouldn’t be herself, with the defining things that make her her. This works with anyone, take away all the above things, take away those fundamental parts of who someone is and they’re not themselves.”

Sadly, one of the world’s leading autism ‘charities’ promotes this agenda. Thankfully they do not have much hold here in England but I see how their words influence people over here. I present to you the cure culture promoting, autistic people ignoring hate group that disguises itself as a charity: Autism Speaks. You may not have heard of them but they promote a lot of ideas I’m against. I’ll bring you a short summery here but Sabrina from strangerdarkerbetter.com posted a great collection of resources that can be found here.

Simply, they promote fear. Autism, to them, is a tragedy that should be cured because of the burden it places on autistic people’s families. Not the struggles autistic people face, but their families. To them, we are not proper human beings. 13% of their money goes into a cure that autistic people don’t want, though of course they don’t know this because despite being called Autism Speaks, they do not listen to us. Functioning labels, to them, are a convenient silencing tactic – “you’re too high functioning to have these struggles” or “you’re too low functioning to understand”.

44% of their money goes towards advertising. They use the puzzle piece logo, something that is rejected by the neurodiversity movement. It symbolises the ‘mystery’ autistic people are, which is not true. I’m not a mystery if you listen to me, but Autism Speaks don’t listen. They also use the colour blue, something said to represent autism because autism is a ‘boys’ thing, apparently. They also promote awareness throughout the year, but mainly in April, their “Autism Awareness Month”.

As a community, we’ve rejected this month and have reclaimed it under the name “Autism Acceptance Month”. Something I’ve typed out before another post is the comparison to illness. Autism is a neurological variation, not a disease like cancer. In this context, we raise awareness for cancer so people understand what harm it can do. Cancer patients aren’t rejected by people for having cancer because it’s not fundamentally who they are. Autistic people are rejected for being autistic because it’s fundamentally who we are. We don’t need awareness, people are aware of us, they just don’t want to listen to us. We need acceptance.

2014-autism-speaks-pie
Credit: Love Explosions

As this graph shows, less than four percent goes to helping autistic people. Four percent. This is why many autistic people – including myself – label it a hate group. Nearly 44% to their fearmongering campaigns, less than 4% to helping the people they’re claiming to speak for.

(Amythest Schaber also has a video in her – incredible and informative – Ask An Autistic series dedicated to the discussion of Autism Speaks)

 

Infantilisation

Another form of ableism is the infantilisation of autistic people. Quite often, saying “I’m autistic!” means that we’re seen as less of a person, and treated like children. I’m a sixteen year old autistic person, you don’t need to coo at me like I’m a baby, I can assure you. I’m autistic and I struggle with somethings you might find easy, but that doesn’t mean I’m a child.

Mental ages play into this as well. They are often seen to be just as ableist as functioning labels. I can’t say I’ve ever personally experienced them used in regards to myself – thankfully – but a blogger, Cyndi from butterflyinthewell.tumblr.com has. She says “I was a victim of the ‘mental ages’ thing that autistic people get slapped onto them. The psychologist who diagnosed me told my mom ‘mentally and emotionally she is always going to be an 8 year old.'” and goes on to say “I’m nearly 37 years old. I was 8 in 1988 and I stopped being 8 from 1989 onward.”

(I felt this topic, especially Cyndi’s words on it, were personal and not my place to share without prior consent so I did seek permission first! Thank you for letting me use them!)

These mental ages aren’t helpful, they just contribute to the idea that autistic people aren’t human beings in the way neurotypical people are. We’re not children in the bodies of adults. We’re people. Age for us is the same as it is for neurotypical people – the amount of years since we were born.

More Ableism

Ableism, in regards to autistic people, also extents further than this. We have anti vaxxers, who pay attention to a person who is no longer a doctor and his debunked research, and would rather have extremely ill children instead of an autistic child. We have violence towards autistic people, for no reason other than the fact they’re autistic. We have so many forms of ableism.

I know this post is extremely negative but it’s an important one that a lot of people won’t see the discussion on. There are a lot of sources on this post to other websites so you can find out more about what I’ve been talking about.

 

Rollercoaster: My Experience with Alexithymia

The past week has been an absolute rollercoaster of emotions for me. This due to circumstances both expected and unexpected but this doesn’t necessarily make it easier for me to deal with them. I have alexithymia and I don’t understand my emotions very well.

The word ‘alexithymia’ stems from three Greek root words. The first root is the prefix ‘a’, which means ‘no’, ‘not’ or ‘without’. This is followed by ‘léxis’, a word meaning ‘speech’ or ‘language’. Finally, it ends with “thymia” –  a word used in the formation of names, specifically when talking about mental health disorders, concerning emotions. Etymologically, it means something close to “no words for mood”, which is close to the actual definition – “difficulty in experiencing, expressing, and describing emotional responses.”

Alexithymia is different for every person who has it: some people cannot understand any emotions at all, while others can’t express or understand them well enough when compared to a typical standard. The exact statistics vary from study to study, but there is a confirmed link between autism and alexithymia. People can have alexithymia without being autistic and can be autistic without experiencing alexithymia, but a lot of autistic people do. This seems to be where the cold and inexpressive stereotype of autistic people comes from. However, it’s inaccurate in a variety of ways, mainly because autistic people do feel things but the difficulty in experiencing, expressing and describing these feelings leads to inaccurate perception of something internal from neurotypical people. Simply, the feeling are there, but the response is different to what neurotypical people might expect.

Alexithymia, for me, means that I can easily identify strong emotions, like anger and excitement, but others are harder. I understand the divide between being happy and sad, but the grey area inbetween is really confusing for me. Growing up, I learnt words like ‘stressed’ and ‘worried’ but I never fully understood them in a way that could make them applicable to me, personally. I used them when it seemed applicable, namely in situations where I’d heard other people use them. This doesn’t mean I identified such emotions, it was more of a stab in the dark and hoping for the best. Dictating emotions is something that general society seems to believe is a simple task but for me, it’s like speaking a language I don’t understand. I’ve heard someone else use it, so I will, but I doesn’t mean I believe nor fully grasp the words I’m speaking.

Knowing about alexithymia means I’m far more likely to be honest about what I’m feeling these days. Having a name for not having the words to discuss emotions means I can discuss them in a way I’ve never been able to. It seems like an oxymoron, but stick with me. If my mum asks me “How are you feeling?”, I realise it’s an option to respond with “I don’t know.” Instead of using specific words, we’ll look at the scenario together and assess it carefully. This means I’m not using words that don’t work with how I’m experiencing things and my mum can help me understand things. It’s not me suddenly understanding what specific emotive words mean, but understanding my mind and using that to my advantage, an advantage other people have in identifying their emotions.

Like I said at the beginning of this post, there’s been a lot happening recently, which means I’ve spent a lot of time in the grey area of emotional confusion. Significantly, I’ve left school, which meant I said goodbye to people who’ve supported me for over a year and helped me grow as a person, and just a day later, my sister got ill and she’s not been herself. I can’t talk for every autistic person, by any means, but I feel at least part of my issue surrounding change is the emotions it provokes. I don’t know how change ends up making me feel thus I begin to struggle with understand my own mind more than usual. Differing from what seems normal – to me – confuses the ‘balance’ of my mind. I can’t realistically control my thoughts in the way I want to because emotions that I fail to fully understand get in the way.

Another problem I have with emotions is that they heavily depend on the situation. What is classed as a ‘sad’ response, can appear in different ways and be a response to different situations. It’s difficult for me to recognise and coherently comprehend that two events could have occurred, one made me cry and the other I didn’t, but they can both be classified as things that have made me ‘sad’.

In reality, putting names to feelings can be useful but I don’t think they should be heavily depended upon in general. I started a course of Cognitive Behavioural Therapy, or CBT, last year to help alleviate anxiety. It seems to be the most common form of therapy for anxiety and depression so I was hopeful that it would work out. Unfortunately, it just didn’t work for me because of the core principles. It is based upon the idea of the link between thoughts, emotions and behaviours – without a full understanding of emotions, I couldn’t work with the therapy, so it couldn’t work for me.

This is a shorter post that normal, but I hope it’s given an insight to what alexithymia is and how it impacts me.

Language: Identity vs Person

Language is a key method of communication, and whether it’s spoken, typed, written down or conveyed by other means, the same message is still getting across. When it comes to disability, and more specifically autism, language gets a bit complicated. There are two main types of language used in relation to autistic people: person-first and identity-first, and not many people are sure which one they should use.

Person-first language is basically putting the person before the other language, and in this case is to say a ‘person-with-autism’. A lot of people believe this is what autistic people prefer, with the theory behind this, even if applied subconsciously, being that the person is ‘more than their autism’. This language is usually applied to be polite, or at least attempt it, because you’re showing that a person is more than the label. However, there are a few reasons why it might not be the best choice.

To begin to explain this, I’m going to use a simple linguistic comparison. When we’re talking about illnesses, we use person- first language. We say ‘a person with a migraine’ or ‘a person who has a migraine’, instead of that person is the migraine, because they’re not. They’re more than the migraine. However, this doesn’t work for autism. As I covered in my last post, it’s a neurological variation not an illness that should be cured. (I am hoping to cover the idea of cure culture in association with autism soon so this is all I’m going to say about this for now).

The second key argument is we, the general population of autistic people, don’t prefer it. It was one of the first things I noticed when becoming part of online autistic communities and quickly agreed with. The use of the opposite of person-first language, which is called identity-first language, seems to be the generally preference of autistic people. I can’t speak on behalf of every other autistic person, which brings us to around 1% of the total population worldwide, so I’m going to turn to a few sources to show this.

There have been two recent surveys run by autistic people that I have taken part in. The first was completed this year in January and was run by Cas, (who can be found here,). This survey had questions on language preference, self identification and diagnosis, among other things, and was answered by around 1000 people. There were two particularly interesting results from this in relation to language preference. The first was about describing in relation to the autistic spectrum

More than one option was allowed here, which is why the figures don’t quite fit for the 1000 people who answered, but you can see that “I’m autistic” features at number one, “I’m on the spectrum” at number two and “I’m Autistic” (as some people prefer to capitalise) at number three. As more than one option was allowed, those who don’t mind capitalising or not capitalising, like myself, probably chose both (and this was confirmed by Cas in the post releasing the survey results). Looking at the exact figures, that around 66.3% who preferred “I’m autistic”, or at least feel comfortable using it and do so regularly.

The second data from this survey, was a question directly link to this post – what language do you prefer? As you can see on the graph below, the top answer was identity-first, with two results before person-first appears. This survey does seem to show a general preference towards identity first language.image

One source, however, isn’t enough to get an idea of the general community. Another autistic blogger, Sabrina (who can be found at here), also recently conducted a image008survey which looked into physical disability, neurodivergence and autism but included a question about language preference. I was one of the around 1000 participants and was interested to see the results, which showed 71%  of those who took it preferred identity-first language, 19% had no preference and just 6% preferred person-first language (with the other percentage of those taking the survey, presumable based off of the other questions in the survey, being family members of autistic people etc.)

(I would like to thank both of the above bloggers who both responded to my requests quickly and kindly allowed me to use their surveys and graphs in this post. I have provided links to their blogs, and the exact posts about the surveys, above).

The National Autistic Society also published findings that autistic adults like identity-first language and have since shifted the terms used in their campaigns accordingly. So that’s two surveys run by autistic individuals and one by a major UK autism organisation.

Another thing I would like to cover quickly is language in relation to the current diagnosis. The DSM-V, a common diagnostic criteria (and one that other criteria have been based off of), uses the term ‘Autistic Spectrum Disorder’ or ASD for what would previously have been different ‘types’ of autism (again, something I plan to cover in the future!). What this means for language is that some people, as you can see in the first survey, use the terms “I have ASD” or “I am on the (autistic) spectrum”. I’d personally use the latter, if I were to use this language, because it’s the case of ‘have’ vs ‘am’. I just feel it’s necessary to remember that these are terms that some people use, but they still have ties to identity-first and person-first language.

Obviously some people disagree and prefer ‘with autism’ or ‘has autism’. I’m never going to force my language preferences on them and I respect their views completely. If they were to correct me on language regarding themselves, I would use the terms they prefer when referring to them.

Despite this, I feel it’s best to use the generally preferred term of ‘autistic’, until you get the opportunity to verify it with the autistic person. Trust me when I say this: we – the identity-first language users- will be impressed if you use ‘autistic’ straight away. The simple reason for this is that this preference – which has been proved by autistic individuals and organisations alike – is often ignored within the generally neurotypical community and even groups supposedly there to support autistic people.

I’d like to think I’ve successfully identified that the majority of the autistic community prefer identity-first language, but I think it’s important to look at why identity-first is used by the majority of the autistic community to help understand its use.

It’s really about implication, which to me is highly amusing and ironic as some autistic people, including myself, struggle with understanding implications. In a way it’s linked to the ideas from earlier as to why the general community is against person-first language, but reversed. It comes to the idea that autism is not a disease or illness, one that a person has and can easily go ‘My autism ends here, and I start here’. Back to the migraine analogy, someone can say “My migraine causes pain but it doesn’t influence what my likes and dislikes are”, which is sometime you can’t do with autism.

Chances are you’re part of the 99% of the population that isn’t autistic, that just probability. You’re allistic, meaning non-autistic, or neurotypical (as opposed to neurodivergent, which encompasses autism, along with other things like ADHD, Tourette Syndrome and OCD). And my sister is just like you, so let’s use her as an example here.

If I were to take away her sensory experiences and subsequent responses, her likes and dislikes, her routines (or lack thereof), the way she moves, the way she thinks, how she communicates and how she acts socially, she wouldn’t be my sister. She wouldn’t be herself, with the defining things that make her her. This works with anyone, take away all the above things, take away those fundamental parts of who someone is and they’re not themselves.

The ‘detaching’ from autism, for me, seems ridiculous. You can’t detach my neurotypical sister from her neurotypical brain because the fact that she’s neurotypical influences how she experiences the world around her, in the same way that you can’t detach me from my autistic brain.

I do understand that the wide use of person-first language seems to come from a place of kindness and just not realising that there’s a preference to identity-first. I simply feel that understanding that a preference exists, and shifting your language according, is an important step to autism acceptance.

A Guide To: Autism

The first thing that needs to be covered is the fact that autism, and its associated word forms, are a taboo. No one really wants to talk about it, it’s just not something that’s covered, which is simply ridiculous to me. Taboos attempt to keep some form of order in society but they just prevent healthy discussions on important topics that could make a huge difference to our lives. A lack of taboo around autism? I think it would lead to wider acceptance – and that’s hugely important.

The best place to start, in an attempt to break down the taboo, is to define and begin to understand what autism is. This can be difficult, however, as it’s a spectrum where everyone has a different experience, but I wouldn’t say this is the main issue. A problem we have is that a lot of the definitions we see come from people observing autistic people, in a traditional medical environment, instead of the autistic people themselves. Autistic people are the best resources for anything to do with autism.

I have two favourite definitions, both coming from groups that work well to support autistic people. One of them comes from ASAN, the Autistic Self Advocacy Network, which calls it a ‘neurological variation’. The other comes from the National Autistic Society, or NAS, who say it’s a ‘developmental disability’. I tend to use the term ‘neurodevelopmental disability’, which encompasses both and describes what autism is for me.

I think breaking apart these words will help get a better idea of what they mean, even if that can be obvious. When we say neurological, we’re talking about the brain, while variation is perhaps a newer term in terms of autism. It has been suggested that autism is more of a healthy variation of the brain than a disorder, which is something I completely I agree with. I wouldn’t really say my life is disordered, it just varies from 99% of the population. On to the NAS definition, developmental means it begins during development and persists throughout life. However, the word disability, for some, is a bit more complex.

It’s a word that’s pretty much as taboo as autism. To some people, it’s surprising that the term disability is used, but it is. Some people, perhaps in an attempt to feel less awkward using a seemingly taboo word, try to say things like “You’re just differently abled, or challenged!”. Those kinds of statements seem to apply to people with all sorts of disabilities, so some go for “You’re autistic, not disabled!”. The problem with this is that disability is talking about impairments and difficulties, which to me are relative to the world around us. The things that make me autistic only become disabling in a world built for abled people.

As a quick example, I struggle with different sensory experiences. The world is generally too loud and too bright for me. Walking alongside a road can be difficult because cars make a lot of noise! It’s not necessarily the concern of car manufactures to make quiet cars, when they can be making fast and expensive ones that’ll sell well. What I’m getting at is that if the world was built for me, I’d definitely struggle less, in a similar way that wheelchair users would struggle less is every shop was completely accessible in a wheelchair. Not everything in this world is accessible, so we’re disabled and unless something drastic changes. However, I’m not too sure where the dimmer switch for the sun is, so I’ll keep using the term disability for a while.

This discomfort born from the taboo means most people don’t actually understand what autism is. To be fair, I didn’t really know before researching to see if my therapist could be right. Sure, I knew of a few autistic people, but I wasn’t too sure what it actually meant for them. Autism is described as a spectrum, so it’s naturally different for everyone, but it generally means issues and difficulties regarding a few things:

  • Atypical movements, often relating to self-stimulatory behaviour
  • Communication
  • Hyperfixation, including special interests
  • Routine and issues subsequent changes
  • Social interaction
  • Atypical sensory experiences

(The list above is inspired by the one from ASAN, which can be found here)

Atypical movements, often relating to self-stimulatory behaviour and atypical sensory experiences

I’ll start with the first bullet point and last bullet point as it’s hard to detach them. I’d be willing to bet most people reading this are confused by the term self-stimulatory behaviour, but as it’s such a key part of like for most autistic people, it’s important to understand it. The autistic community use the word ‘stimming’ to describe this. Quite simply, it’s repetitive movements, completed with the aim of calming and/or stimulating the senses. You’ve probably seen this kind of harmless behaviour, often portrayed in a negative light. It ranges from hand flapping and rocking to repeating words or feeling a piece of cloth with a wonderful texture.

Autistic people tend to be hypersensitive or hyposensitive, with the former meaning ‘over’ and the latter meaning ‘under’. We often have a condition, that comes along with being autistic, called Sensory Processing Disorder, or SPD. It means exactly what is looks like – trouble processing sensory information. This relates to stimming in two main ways – hypersensitive people will usually stim to calm and regulate themselves while hyposensitive people will try to receive more sensory input.

Early on at school, we learn about the five senses, but we actually have seven. The five you know about – touch, taste, smell, noise and sight – are joined by two others. These are called vestibular and proprioceptive. Proprioception is basically where you and your body parts are within the space you occupy and this in relation to things around you while vestibular is to do with your movement and balance.

The best way to demonstrate what the senses mean for autistic people is to look at specific stims and related them to the senses. I’ve picked more positive stims for these examples, and all the stims are ones that I regularly do.

Sense Stim Example
Touch/Tactile Feeling silky fabrics
Taste Eating a favourite food (for me, chocolate!)
Smell Smelling a nice perfume
Noise/Auditory Clicking fingers to hear the sound
Sight/Visual Blinking quickly
Vestibular Rocking back and forth
Proprioception Pressure, using something weighted

Autistic people can be working to keep their body balanced – for example, I might need ear plugs to block out additional, and somewhat painful, auditory input while also be rocking to gain vestibular input.

Another way autistic people stim is to use stim toys. These are often seen as ‘fidgets’ or ‘things to fiddle with’ in a way to achieve sensory input. Pretty much anything can be a stim toy for us. Some can be brought for the specific purpose of stimming, like plastic tangles or the fidget cube that become popular recently, while others could be things we had lying around, an offcut of fabric or a hairclip. All of these things are stim toys as they help an autistic person stim.

Communication and social interaction

The second bullet point was communication – autistic people often struggle with communication in all manner of different ways and for several reasons. I’m going to attempt to explore are the main ways communication can be a struggle for autistic people.

The first one is verbal communication. Some autistic people struggle with verbal communication, with some people getting to grips with it at a later stage than most  while others permanently using AACs (Augmentative and Alternative Communication), with commonly known forms of this being sign language and the use of computers through typing and displaying words.

I’d say I’m semi or partially verbal. I’d say about 80% of the time I can successfully communicate verbally but when I’m stressed, tired or post-meltdown, verbal communication is just not going to happen for me. My speech is not coherent, if I can get words out at all. Luckily, my family are adaptable at these times, and will only ask me questions that I can nod or shake my head to, slowly easing me back into speech.

It’s not just verbal communication though: social cues, facial expressions and knowing exactly when to speak are also difficult. Facial expressions are baffling to me! I mean, I understand that you’re feeling negative or positive but anything else? I’d likely chose a random one that fits into those two categories and presume you’re feeling that. I feel the same with body language, which made my Year 8 drama lessons … interesting. “Show, with only your body language that you’re feeling sad” was something I’m sure I responded to with a highly-confused look. It means my body language, and that of other autistic people, might not be what you expect.

Another social cue is the tone of voice, that one got me into a bit of trouble when I was younger. Nothing bad, really, but my mum would tell me not to be so rude, or something similar, and I just didn’t get it! My words weren’t rude, but apparently my tone was. (I would like to note here that my mum is wonderful, and especially post-diagnosis we know why these things are the way they are!).

Knowing when to speak seems to be a constant nightmare for me, especially when it’s coupled with my social anxiety. The latter means I get embarrassed so easily in social situations. Pausing for breath is something I find baffling. I get it’s necessary, of cause but when someone’s still got more to say but they pause for a second, I don’t walway het it! Particularly when I’ve got a lot to say, I misinterpret this entirely which leads to a mess of two conversations on top of each other and an embarrassed Emma.

Autistic people will often ‘script’ which is sort of what it says it is. I think it’s an adaption from not understanding situations. For example, if someone says “Hello, how are you?”, an autistic person might have a completely planned answer, but if you were to ask another question or change topic, they might not be able to communicate because it’s not been planned beforehand.

Finally, echolalia is another way some autistic people communicate. It’s a fancy term for the repetition of a word or phrase. Anyone who’s seen Sesame Street’s new character Julia will realise that when someone asks her to play, she responds with “Play! Play! Play!”. It’s her way of agreeing. This is a more communicative form of echolalia but it can also be seen as a stim – liking the way it sounds and feels as you say. Julia says “boing!” when she’s jumping and I’ve got to admit, it’s a great vocal stim!

Hyperfixation, including special interests

The third point is hyperfixations, mainly talking about special interests. So, what is a special interest? It’s a term reserved exclusively for neurodivergent people in relation to a passionate level of focus on a specific topic, item or thing. They’re usually so intense and mean a lot to autistic people. They can range from TV shows, books and films to plants, history or transport. There is a difference between liking something and having a special interest, but this is so easily misunderstood. I find it disastrously tricky to explain this, especially since my longest standing, main special interest is popular. You see, Harry Potter has been the biggest special interest in my life. I’ve read all the books and watched all the films at least eight times each since I was 11 years old. I study passages and even have a notebook dedicated to the thoughts that spiral after even thinking about it. However, so many people like Harry Potter and I’ve had conversations that have gone like this:

“Because part of being autistic is having intense interests, I’ve read the books eight times and….”

“That’s not an autistic thing – I love Harry Potter too!”

It’s just kind of missing the point. My interest is not the “autistic thing” but the intensity of happiness it brings me and the way I focus on it is. I can be occupied for hours just reading the same books over and over, noticing new details and living in a world completely different to my own. I can’t begin to explain, in a coherent and understandable way, what the special interests make me feel but I can give an example.

After a meltdown, I was tired and not really communicating with my mum, through choice, I just wasn’t sure what to say. Next to my bed was a copy of Harry Potter and the Philosopher’s Stone, and my mum, trying to distract me from the uncomfortable state I was in, said “So you’re reading them again?”. I’m fairly certain I nodded, and my mum noted how far I gotten…and that I was it. Out of my mouth flew a large infodump (the term used for explaining details about a special interest, often in an excited manner) on where I was and what was going on. My mum, not one to read, probably thought ‘What a lot of nonsense!’, but the smile on her face cheered me right up.

Routine and issues subsequent changes

Strict routine is often something associated with autistic people, and for good reason. I love routines and find things horrible if the routine isn’t followed. For example, I have to leave the house before 8:17 in the morning and if I don’t, I might not leave the house for the rest of the day. I don’t mind changes to my routine if I’m very prepared in advance or if the change is on my terms. As part of this, order is a huge part of my life. I like organising things in a way that makes sense for me. Changing routine or order can lead to a meltdown, because it’s really distressing when things are different. I found holidays really distressing when I was younger, enjoying them for the most part but hating the change from what was normal and always demanding to hear what we’d be doing the next day.

So that was just a run down of what autism is and especially what it means to me. I hope it’s helped to make sense of it from a first person perspective. It’s really easy to understand autistic people by just communicating with us, even if we do find that difficult sometimes!