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.

MEAnd 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.

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!

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 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.

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.

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!