What does sensory overload feel like?

For many autistic people, sensory overload is a daily occurrence. Over the course of the day there is a build up of stimulation of the senses. There comes a time in the day (usually mid to late afternoon) where your body gently (or not so gently) warns you that it’s time to stop.

Sensory overload is defined as “when one or more of the body’s senses experiences over-stimulation from the environment.” Autistic people are especially prone to experiencing sensory overload. Sudden noise, lurid colours and bright lights are just a few examples of-

Sorry, I’m having difficulty concentrating because some seagulls on our roof have decided this precise moment would be perfect to squawk and screech at each other.

Where was I? Oh yes, sensory overload. It doesn’t just have to be loud, annoying seagulls. The stress of having to cope with all the senses battling for attention builds up until you experience “overload”.

This can occur anywhere, anytime – all it takes is one trigger, which could be a tone of voice or sudden movement. As a result, autistic people have to be hyper-aware of their surroundings in order to avoid a public meltdown.

My sensory overload manifests itself in a constant headache (3 years straight and counting…) and heavy, dry eyes. I know when I’ve pushed myself too far when I start to feel dizzy and see spots on the ground. Sensory overload can usually be remedied with a gentle evening and a full night’s sleep – I sometimes think of it as like a reset.

I have managed to find some coping mechanisms to deal with the daily sensory overload that comes from my college day and my journey home on the bus and train. I try to re-focus my 5 senses: first, I find a quiet, safe place to calm down. I sit down with my back straight against the back of the chair, or sit on the floor with my back against the wall. I close my eyes and listen to music. I go through phases where certain songs calm me down better than others. It used to be Blur (specifically ‘Charmless Man’) but at the moment it’s ‘Almost There’ from Princess and the Frog.

If you think that someone else is experiencing sensory overload the best way to deal with it is to be direct with them. Personally, it’s too late to ask me questions as I lose my ability to communicate effectively when I’m in distress. I need someone to tell me, rather than ask me, to leave the room or to sit down or to go home.

Compassion and directions are best: for example, my English teacher might tell me to leave the classroom for 5 minutes if she sees me struggling in a difficult sensory activity (like watching The Tempest Opera on full volume…). Recognising the signs and identifying the triggers are the best way to deal with sensory overload.

From,

Your Autistic Friend.

Why is the classroom a difficult space?

For some people, the classroom can be a place of fear and anxiety. Although I am a very academic person, and love learning, I wake up every weekday with dread in my stomach.

The sensory environment affects my ability to cope with the social aspect of the classroom. For example, the lights in British classrooms are horrible: big white strip lights that give me headaches and make my vision blurry. Even the chair I sit on can cause discomfort, especially if someone else is sitting in MY seat!

The classroom is a social space, so it adds another layer for an autistic person to navigate. Teachers and students love metaphors, humour and irony and use them for connection. But for someone like me, it can be incredibly confusing. I’m trying to keep up with the content of the lesson while also having to consciously separate a serious comment from a throwaway joke.

This doesn’t mean I don’t have a sense of humour. Don’t get me wrong, I love political dark humour, especially TV shows like The Last Leg. But in the classroom, out of context? I can’t tell if they’re being sarcastic. We had a lecture on Gandhi a couple weeks ago. There were some very awkward conversations…

The general unpredictability that comes from a college environment is distracting and overwhelming. Tests without warning, busy lunchtimes, loud and rowdy teenagers; even walking down the corridor can be difficult when you struggle with sensory overload. Because it’s so exhausting, I find it very difficult to keep track of all the tasks I’m expected to complete if we’re only told verbally at the start of the lesson – I need written instructions because then I have something firm to work with.

In order to cope with all of the above, I use up so much energy I come home incredibly drained. That’s why lockdown was so freeing, because I didn’t have to deal with the stress of the classroom environment. For the first time, I was actively involved in class, asking and answering questions on the Microsoft Teams chat in my live lectures.

While the classroom is not always instantly autism-friendly, there are a few things schools can implement. For example, encouraging communication between the teacher and pupil. I don’t want to feel like a nuisance or a burden to the teacher if I want to talk something through – I don’t want to feel weird for asking them to use clearer language and clarify what they said about Gandhi.

With just a few small changes made to accommodate the neurodiversity in school classrooms, the quality of learning would improve so much. That way people like me, who genuinely enjoy learning about things like McLaughin’s 4 categories of state crime, I wouldn’t wake up feeling sick and anxious, I would just be excited…

From,

Your Autistic Friend.

Why is social interaction so exhausting?

It takes so much energy to live in our fast-paced neurotypical society. We all need a break sometimes, but for someone like me, who gets exhausted just walking to a shop, I have very little energy at the end of the day and can just about manage settling in front of the TV.

The best way I found that can explain autism fatigue is Christine Miserandino’s Spoon Theory. This is a metaphor that can explain the struggle of day-to-day living with a number of illnesses and disabilities, and was orginally created to explain what having lupus feels like.

So, after a full night’s sleep, you wake up with 10 spoons of energy. Every task and menial activity you perform uses up a bit of energy, or ‘spoon’.

For a neurotypical person, your day might end up looking something like this:

Wake up, eat breakfast, get dressed and shower (1 spoon).

Pop to the shops to pick up some milk and bread (1 spoon )

Drive to work (2 spoons – there’s traffic)

Normal 9-5 working day (3 spoons)

Drive home (2 spoons)

Eat dinner, watch TV and get ready for bed (1 spoon)

If you do something strenuous in your day occasionally that requires more than 10 spoons, you can ‘borrow’ some from the next day. This means that you’d wake up with only 8 spoons (this is a good explanation for why we’re so tired after a long day out).

For an autistic person, though, it’s a little different, because daily tasks require so much more energy, effort and concentration. 10 spoons is not enough. Social interaction, keeping up with the conversation, holding it together when you have sensory overload – that uses up so many more spoons. So a daily spoonload for me might look like this:

Wake up, eat breakfast, get dressed and shower (1 spoon).

College commute (2-4 spoons – depending on delays which cause me anxiety)

Normal college day (2-4 spoons)

Lift home from mum or dad (2 spoons – I’m too tired to get the train)

Work (waitressing once a week) or homework (2 spoons)

Eat dinner, watch TV and get ready for bed (1 spoon)

And so this is why after even an average school day I can’t really do much except ‘decompose’ (I mean de-stress, but I prefer decomposing). That looks something like just sitting in my room on the floor with my headphones on. Because of all the spoon-borrowing I have to do during the week, I often have nothing left for the weekend.

Is there a way to combat this daily social and physical exhaustion? Yes. Manage my time and my space on my terms. I didn’t have autism fatigue in lockdown! On the plus side, I built up a few spoons.

From,

Your Autistic Friend.

Are autistic people empathetic?

Empathy is the internal experience of another person’s suffering – it is feeling emotion.

On the other side of the coin, we have sympathy: external understanding and acknowledgement of emotion.

I think both are incredibly difficult for an autistic person, but particularly empathy (the abstract concept of putting yourself in someone else’s shoes.) How do you relate and apply your personal experiences to other situations? And, most of all, how do you show this?

It may be difficult, but that’s not to say autistic people are not empathetic at all. Understanding empathy and understanding the appropriate way to express it is different from feeling empathy at all. Autistic people feel empathy – but it’s another matter knowing what to do with it.

Let’s take watching a film, for example. I don’t really like watching extreme emotion on screen. I used to say “slap the bacon!” during a scene where I felt particularly awkward (among my family, of course – not just randomly in public). I would struggle to separate the emotion on screen with the story and my own feelings, feeling confused or even angry when characters would be upset or cry. I was projecting my circumstances onto them, desperately trying to rationalise in order to make sense of the emotion I was watching, and the emotion I was feeling.

Needless to say, this makes watching TV with me *sometimes* difficult.

Although I still find it hard to accept emotion (the logical side of my brain tries to compartmentalise everything), I have found a solution: listening. It may sound stupid, but I have realised how much people, myself included, don’t really listen to other people’s problems. We hear them, and maybe try to give advice to solve them, but the crucial part of social interaction is empathy. That’s how friendships stay strong.

There is ‘dismissive listening’ – the sympathy, like “it could be worse”, or “try this!”. Then there is ’empathetic listening’. And this is so much harder for even neurotypicals, because empathy can’t be articulated simply through words, it requires conviction and feeling.

So yes, autistic people can feel empathy, especially if they have experienced something similar. The difficulty arises with articulating and expressing that empathy, although to be honest, it is something ALL of us, even neurotypicals, should work on.

From,

Your Autistic Friend.

Can you keep it down?

Alright, alright. I know I have bat hearing, I’ve been told many times. When my bedroom window’s open, I can hear the conversation of every person that walks by (congratulations, lady in the blue shorts, I’m so glad Archie is finally dressing himself in the morning).

I know that I’m much more sensitive than others when it comes to noise, but this doesn’t make me more tolerant. My mum stopped inviting people over in the evenings a few years ago. Laughter, music, people having fun! When I’m trying to sleep! Absolutely not!! Once the noise starts I can’t let go, and it takes a good hour or two after it’s over for me to relax again.

I am not much better now, although I am less likely to erupt with anger and more likely to break down in tears, fixating obsessively on the noise in question, no matter how loud it is, and opening the curtain every few seconds to see if the drunken people below my window are still there (SPOILER: they’re not. They’re still not. Stop looking!)

Our neighbours have younger children, under the age of 6, next door and opposite to us. Under lockdown, the house opposite had noisy playdate after playdate: screeching, shouting children, crying and fighting, laughing and playing, while I tried to do my work while simultaneously trying to rationalise with my anger.

As I write, some kind of drill or lawnmower has started up. I’ve got a headache.

The house opposite, before the young family moved in, used to be home to young people who had a tiki bar and a jacuzzi in their garden and used to have crazy parties with loud booming music and drunken party-goers spilling onto the streets well after midnight. I suppose children are better.

I’d like to think that when I go to university and move to a city my apprehension surrounding noise will fade overtime as I get used to it. I don’t want to be an 18-year-old killjoy who stops your lockdown rave, but please, could you keep it down?

The lawnmower-drill was listening to me. It just stopped.

Can we skip the small talk?

I would consider myself adept at small talk when it comes to people I know well. This is a situation where my detail-driven memory serves me best, as I remember to talk about a football game they mentioned in passing, or a new haircut. If they’re not a talkative person already, bringing up a topic you know they have mentioned in the past is a safe bet for any autistic or socially anxious person. It makes you a good listener, and a thoughtful friend.

So it’s first introductions that I dread. I am only 17 so the flurry of small talk that follows (usually when my mum introduces me to someone she knows) is school-related. This is good because I can talk a lot about school (although that creates a whole other problem: how evenly should the speaking time be divided between us?)

Small talk with people my own age it’s hard. I usually try to find something to compliment and talk about, like their dress (OMG, so cute, where did you get it? No way!).

This also gives me something to look at. Often with someone new, or someone I haven’t seen in a while, I’ll find myself staring at their shoes or something and then when they notice I have to make up a reason why I’m staring.

When I get nervous I ramble. My dad taught me that you should just get the other person started on a subject, but it can be hard to find a subject that’s not exhaustive, especially if they’re not much of a talker.

I would much rather skip the small talk altogether. There’s got to be a less painful transition from stranger to friendly acquaintance or friend. I just find the awkward silences and mutual discomfort difficult to contend with, especially when the fake smiles come in.

Am I being too pessimistic here? Does anyone actually enjoy small talk? It’s so much better when you have a mutual friend to lead the way, or, in my case, my mum.

For most neurotypicals, navigating conversations is largely automatic. Your brain naturally picks up on social cues, you know when to speak, when to listen, when to smile, when to say goodbye. Many autistic people, like me, have to do all this manually. And it’s exhausting.

For example, my goodbyes are too abrupt. I am well aware of this – I can tell by the look of surprise on the person’s face to be rid of me so easily – but I still don’t know how to ease the conversation to a close.

And that is why meeting new people, and navigating small talk, is so tiring and frustrating for me most of the time. I am concentrating so hard on what I’m saying, what they’re saying, the energy I’m projecting, their body language… and that’s with the sensory discomfort of the environment around us, like bright lights and loud noise at a party.

I am getting better at recognising when I will and won’t be able to sustain a conversation with a friend or stranger. When I see someone I know in the street, for example, but I have just spent 20 minutes crying in Specsavers, I know that perhaps now isn’t the best time to stretch those social muscles…

From,

Your Autistic Friend.

Aren’t we all a bit autistic?

Maybe you’ve said it to make me feel better. So I feel less different. If someone has disclosed their autism diagnosis to you, they are likely comfortable with that label and they may even use it to protect themselves from discrimination, or don’t just want to be classified as the ‘weird kid’. But whatever the motivation, saying ‘aren’t we all a bit autistic’ can come across as dismissing or even erasing someone’s identity.

But is there merit to the question? Harvard research published in 2016 said we all fit somewhere on the autism spectrum, but an array of random quirks are different than what makes up Autism Spectrum Condition.

Perhaps not everyone is autistic but some people might have autistic traits. For example, you might get sensory overload at the beach because you don’t like the texture of sand. But that doesn’t necessarily make you autistic.

The spectrum is so broad that the question of us all being a bit autistic makes me uncomfortable, because we are all so different. It also begs the question, can you call yourself autistic before an official diagnosis?

There are many, many ‘am I autistic’ quizzes out there that affirm the most stereotypical autistic traits, some that could just as easily be classified as simply ‘introverted’ or ‘shy’.

As autism is a developmental disorder that affects the way your brain works, and thus is not visible, it is not easy to diagnose. Many autistic people go through life without a diagnosis, with judgemental labels like ‘weird’ or ‘annoying’.

The question of whether we are all a little bit autistic depends on what you define as autism. According to the World Health Organisation, 1 in 160 children have an autism spectrum disorder, but traits vary from person to person and between boys and girls.

The fact of the matter is, we should all value each other’s needs, appreciating neurodiversity, whether someone is autistic or not.

From,

Your Autistic Friend.

Does wearing a mask have more benefits than you think?

This week has been my first few days back at college. I’ve been extremely nervous as most 16- 17- and 18-year-olds don’t seem to be taking Covid-19 very seriously. They’re not wearing masks, they’re not respecting one-way systems around campus and they’re certainly not social distancing.

Personally, I like wearing my mask. Although it’s quite uncomfortable, hot and stuffy (!), it alleviates a lot of my social anxiety. I don’t have to worry about having the appropriate facial expression and I feel less self-conscious.

For example, if someone is talking to me, I don’t have to think about having what they think is a ‘blank expression’. Face masks are a physical manifestation of the metaphor many autistic people use of ‘masking’, meaning they copy their neurotypical peers to try to fit in.

In the 1960s, Doctor Mehrabian carried out a study investigating non-verbal communication. He concluded that 93% (!) of communication is non-verbal: 38% vocal and 55% visual.

Without the reassurance of facial expressions and friendly smiles to put another person at ease, I can understand why teenagers may be reluctant to put on their mask. Not only is it physically uncomfortable, but how are you supposed to make friends when everyone’s faces are covered?

It seems like neurotypicals are experiencing what many autistic people have experienced every day of their life. It’s so much harder to read a person’s facial expressions and body language when the lower half of their face is covered – but communication is not impossible.

It’s so much more important to use our words carefully and be more literal in our choice of language, when facial cues are practically non-existent. For example, it is harder to discern sarcasm and self-deprecating jokes when a mask is worn.

Wearing a mask should become more socially acceptable among young people as people settle into college and universities and find their friendship groups. Put on your mask and relax: you will never have to laugh at your teacher’s terrible jokes again, and you are saving lives in the process!

From,

Your Autistic Friend.

At what point do I tell you about my diagnosis?

As I am still at school, most of the people I interact with during the day – friends, family, teachers – already know I have ASD, or, at the very least, know that I have anxiety. Occasionally there are awkward moments where I wonder if they’ve forgotten…

With school, the question of when I tell teachers about my diagnosis is answered for me – with every new school I go to, my letter of diagnosis follows and I am (usually) hooked up with the autism or SEN coordinator. They send out an email to my teachers about my needs (like blue paper, a seat by the door, written instructions etc) and all I need to do when I meet them for the first time is tell them my name. 

With people my own age it’s different.  

My close circle of 5 friends are generally understanding and don’t blink an eyelid when I explain that, of course I won’t be going on that school trip, a 2 hour coach ride, can you imagine? I’ve been friends with the same group for 6 years, one girl has known me since I was 4. Since we’ve basically grown up together, it’s a lot easier for autism diagnosis to become just part of your personality. This I like – it’s rare that I feel ‘othered’ when I’m with them. 

I’ve never been to a party but how would I explain myself to someone I am friendly with but not close enough? You have to trust someone first, and trust they’re not going around telling people you don’t want to know. 

But for the people who really need to know – like friends’ mums who make you feel like you’re weird, people you meet at college who want to hang out an hour away – when is the right time to tell them? And how do you lightly bring it up? 

Sometimes I have a problem even getting the word ‘autistic’ out. One time, I had the perfect opportunity to tell a girl I have special needs (she asked where I had been all week – I was away getting diagnosed) but I couldn’t. So I lied. As far as I’m aware, she still doesn’t know. 

It’s actually easier telling a stranger or someone you just met. Maybe that’s the answer to my question. It could be that, because they don’t know me, I’m less self-conscious and defensive, like I’m worried someone I’ve known for a long time will challenge me because I have been able to do everything perfectly normally since I’ve known them (as far as they’re concerned). 

You might question why I need to tell you I have autism in the first place. Actually, it’s often not even for you. It’s for me, so I can be myself around you without feeling like I’m sitting on some weird secret. 

From, 

Your Autistic Friend. 

Am I autistic enough?

I was diagnosed with Autism Spectrum Disorder (ASD) in June 2018, aged 15. I left school for a few days to be tested six hours away from home in Kent, in a place that specialised in autism in girls.

It was my mum who pushed for me to get tested – the waiting list to get tested on the NHS where I lived was 3 years, but we managed to get me tested out of county. I had struggled severely with anxiety in the summer of 2017, had a few counselling sessions here and there and some CBT (dead end) and before I knew it the word ‘autism’ was being thrown around. 

I wish I remember what I thought about autism before I was diagnosed, but I don’t. I probably didn’t know very much, and even now I sometimes feel like an imposter – like I’m somehow less autistic – when I find myself having a good day.

This might have something to do with the fact that I have not yet met a person with ASD who is the same as me and high-functioning, AKA holds it together in public but crumbles apart at home.

Because of this, I have never felt like I fit in either bracket, with the neurotypicals or with the people with diagnosed ASD. I want people to know I have ASD, and call it autism because that’s easier to understand, so that I can explain to them with a fully articulated reason why I act ‘weird’ sometimes. 

On the other hand, I don’t know what first springs to people’s minds when I say autism. Do they know it’s an incredibly diverse spectrum spanning all ages, genders and ethnicities? Or have they never encountered autism before, and only know offensive stereotypes from books and TV? 

I sometimes feel like I’m not autistic enough because I focus all my energy into keeping up with my neurotypical classmates. I am constantly aware of my surroundings, if I’m being too chatty, or people are looking at me. I put on my mask and try so hard to fit in, I wonder if even my closest friends will ever understand exactly what I mean when I say ‘I need a meltdown’ or ‘I had a panic attack.’ 

It’s like the boy who cried wolf. If I don’t take off my mask, will people ever take me seriously when I say I need extra help? 

I can’t always articulate myself like this. I describe my autism as like an onion: I can quickly shed my layers and expose my hysterical, non-verbal core if I’m triggered. 

So the next time you want to tell someone they don’t ‘look autistic’, just think about the amount of energy and effort going into keeping that onion skin on for you.  

From, 

Your Autistic Friend.