People with autism can be sensitive to lights, sounds, smells and sights. This can lead to an overload – and a meltdown. 

Rose

Bill

Meg

Clare

Rose

Sensory overload feels like you are drowning, blind, banging your head against a brick wall and in a sauna − all at the same time. I am SO sensitive and it’s horrible.

Rose

Noise: Ah - OK- my worst one! I often describe it with mixed analogies, all of which insinuate a form of torture or discomfort! It's like trying to push liquid into an already overfull container. If I already have things going on, building up, or even just when I am trying to concentrate and there is noise, I quickly crumble. I feel my body heat up - a fire up my neck, across my face and then all over. My face goes red and my heart rate flies up. If I am in a café and my friends are talking I struggle because I am forcing myself to be attentive but I feel so overwhelmed. I can hear and feel and see everything. The cafes where they heat their milk crazy loud make me lose control. A lot of the time this is internalised though. I suffer but continue or mask it because I actively try so hard to function like everyone else does. I envy my friends for being so calm in a café. I would need silence just to read the entire menu (and I mean the whole thing!) before I could decide.

Construction actually makes me physically ill. At university, I realised how badly this affected me because I was scratching patches into my skin and pulling my hair out and hiding under my desk because there was CONSTANT noise of construction right outside my window as they built a new block. In class, if someone taps, and in exams if someone taps, I would lose it. I would fail my exam because of that noise.

I recently took an exam and I went blank because there was a fire alarm going off nearby on repeat and the sound of someone breathing loudly. It completely drowns me. I can’t even begin to explain HOW much it affects me.

In my previous job, we had to make a lot of phone calls a day, amongst the noise of the other works, builders etc. I couldn’t handle it. Each day I came home and I felt defeated.

When I was first going through my diagnosis, my Mum had already been diagnosed. Without questioning it, or worrying about the cost, Mum identified the best headphones to suit my needs. I am obsessed with matching my clothes and everything so we bought Mum a big pink noise cancelling pair, and me a bright blue. Mum understood me.

I need the headphones to be big and bright so people don't try to talk to me. And I need them to be loud and cordless.

If I can wear my headphones and blast music through my ears in the gym, down the street, on the bus. I can cope. But I can’t do that whilst I concentrate because I cannot read or type with music in my ears. It’s horrible!

The university said I could move to another block on a different campus. But this posed MORE issues. I would have to move in with strangers and be away from the environment I was accustomed to. It also meant change and change can take me weeks to recover from. Either way I felt trapped and ill with it all.

I am affected by light too. Too much blinds me and I get overwhelmed. Too little and I am a mess. If someone tries to show me a picture on their phone and their brightness it turned down it makes me frown. I need a lot of light to focus and no light to sleep.

Some of my friends have asked how they can better understand me and most importantly, they don't pressure me when I feel too anxious or cancel plans. They've understood why I don't like to meet up in cafes.

This has been important to me because as I have only recently been diagnosed, I feared all my friends may not understand or believe me.

I struggled significantly growing up, I had an ADHD diagnosis when I was 12. I battled with heavy depression and I got into the ‘wrong crowd’ reaaaaally young. However, I joke that I have lived two lives in one because the way I am now is so different to who I was. I still have significant demons and two years ago, was in hospital, but now I see myself as the strongest I have ever been. Simply having the label of autism has completely changed how I handle things and how I forgive myself.” 

To help stop the overload, I won't pressure friends to come out if they don't want to. What will you do for autistic people?

Make your pledge

Bill 

Hilarie Williams talks about travelling with her 26-year-old son, Bill, who is on the autism spectrum.

Being an hour early is part of being prepared, and being prepared for (almost) every possibility is what travelling with Bill is all about. Oh, and having the skin of a rhinoceros.

I alight from the train on a foggy Friday morning. Other passengers head out for work or for shopping but I head to the ticket machine and buy two sets of tickets to go straight back. Then I sit in the station café for an hour until Bill arrives.

As I sip my coffee, I catch the sound of my son's approach: hard to describe but unmistakable; something between shrieking and yodelling but with a booming quality as well. I gulp down the rest of the coffee because I have to get out of the cafe fast. If Bill sees me there he will make a beeline for the café. If he sits down, it will be almost impossible to get him to budge before he has had a cake or muffin.

26-year-old autistic man Bill and his Dad on the beach

So here he is, 6' 2", over 15 stone, flanked by Pat (burly and tattooed) and Bo (slight but determined). Bill has his headphones on and clutches his iPod because he craves a continuous diet of music. The music helps to shut out other sounds that upset him. It can be really difficult to predict what those sounds will be but lots of people talking is a major problem.

As we go through the routine check – epilepsy medication, disabled rail-card, expected return time – Bill starts to jump up and down on the spot and shriek demands. Calls for "chips tonight" reach a crescendo and we dodge staring fellow travelers, retiring to a bench and refocusing by looking at his TEACCH schedule.

Between three of us, we negotiate Bill through the ticket barrier. Luckily the station staff know Bill well by now (maybe they have had autism awareness training) and they let the support workers come through with us without question.

This makes a real difference as having to stop for detailed explanations is the sort of thing that can derail the most meticulous planning. Maybe its just so immediately obvious nowadays that Bill is seriously disabled – how many large 26-year-olds slap their own faces and pogo up and down? 

The accusations of bad parenting by smugly virtuous bystanders have long gone, even if a few stares remain.

The next scheduled stop is the lavatory and I have our RADAR key at the ready. In his endless search for sensory stimulation, Bill goes through the ritual of pulling out as much toilet paper as he can, flushing repeatedly, and trying to empty the liquid soap dispenser while spraying tap-water everywhere. Firm words are said to redirect him.

Then my phone rings... Bill tries desperately to stop me answering. "Phone in pocket" he demands as he grabs my hand. He hates phones. They are something people use to talk to each other.

We use this station for several reasons. Although quite a major station, it is fairly quiet outside rush hour and the mellow brick walls of the ticket hall absorb sound rather than reflecting it.

Once through the barrier we are out in the open air. The alternative (faster) service goes from the main city station where the echoing noise from shoppers, travellers and trains can be overwhelming. Another vital point is that the service we use turns round here. 

Our train comes in half an hour before it goes out again so there is plenty of scope to make sure it has arrived, and to get on before anyone else, so we get airline style seats that are near the disabled loo (be prepared!).

Bill goes next to the window with me sitting in the aisle seat hemming him in and we say goodbye to Pat and Bo. Bill stretches his legs out under the seat in front. We can't have a table seat because having somebody opposite would create a legroom problem (Bill has no inhibitions about occupying all the space).

It would also risk an unwanted conversation – so difficult to rebuff other passengers who want to be kind, but potentially worse to have to calm Bill down when he objects to the talking by acting out. Best to avoid altogether.

So here we are, corralled in our own little world. Bill fingers the fringes of my scarf and I hand him a gel pack that is like frog spawn in a bag to divert his need for tactile sensation. But his priority now is "snack".

So I get out the alcohol hand gel and Bill’s lunch: cold chicken, carrots, hula hoops, Satsuma, water. All are wolfed down at speed and we start on the list of activity choices. Today, Bill wants to play cards. There is only one game, our own simplified variant of WHOT which involves matching cards with numbers and shapes. 

We've played nine games and are well into the journey by the time I manage to persuade him to change to something else, because I can no longer stand hearing him repeat "three triangles, three triangles, three triangles; ten circles, ten circles, ten circles" and so on, and on, in gruff staccato tones.

26-year-old autistic man, Bill, at the snow dome

My own stress over this is increased by another passenger, a child of about three who has just boarded with her mother. The little girl is fascinated by Bill. She stands on the seat in front of us and looks over the back at him. He giggles and raises a hand to touch her face. But, I'm on it – I grab his arm and pull it down "hand down" I hiss.

I offer him another satsuma as a diversion tactic and direct his attention to the list of activity choices. The little girl slides down and spends the next ten minutes looking at us between the two seat backs, turning her head this way and that, sometimes sticking her tongue out.

I remain like a coiled spring ready to stop Bill putting his hand out again: the very last thing we want is a scene with the little girl's mum. But she seems oblivious, as glued to the screen of her mobile phone as I am to  Bill's every move. I pray that they will be getting out soon. Mercifully, they leave at the next station.

WHOT is followed by a jigsaw on the iPad. Thank heavens for Steve Jobs. But as soon as the puzzle is completed, Bill defaults to "doodle", an iPad game that requires the player to find objects and touch them. "Underpants, underpants" Bill yells as the objects in question come up. Bill's articulation isn't good so this is possibly just preferable to his more usual repertoire of throat clearing, and banshee cries. 

Then my phone rings – Bill's Dad is checking on progress as he will have left work and be waiting at the station when we arrive. Bill tries desperately to stop me answering. "Phone in pocket" he demands as he grabs my hand. He hates phones. They are something people use to talk to each other. 

I have fouled up as I forgot the earbuds that would have enabled me to answer without taking the phone out of my pocket. This time I wasn't prepared. Now that this has stimulated Bill’' anxiety, he needs a tactile fix and reaches out to run his fingers through my hair – again and again. And again.

We've arrived. Bill doesn't want to get off the train or surrender the iPad. I resort to bribery (promise of hot bath as soon as we get home) and we make our way to the barrier. We narrowly avoid diverting to the lavatory (all that lovely loo paper, water and liquid soap) and, at last, there's Dad, ready to drive us home.

Phew.

What can you do? Make some space. Lots of little things can add up to an overload of sensory information. Which means little things from you can cut this down – try to avoid talking over each other, turn down your music, or even just offer to dim glaring lights.

Make your pledge

Meg 

Telling people about sensory sensitivity is always a tricky thing, and the idea of these difficulties extending to include clothing is a concept that most find difficult to grasp.

Megan

For me, wearing actual denim (jeans) is not dissimilar to scraping my skin with coarse sandpaper.

I was going to say a cheese-grater, but it’s somewhat worse than that. Maybe it’s a mixture of both. Imagine trying to walk around and move about wearing jeans that are made of some kind of coarse iron-filing sandpaper, or trying to get on with your to-do list while nearly always being in distracting, niggling pain.

Some types of wool feel sticky. Heavy and sticky, like a tacky weighted cobweb sweater disaster, similar to falling into quicksand. Wearing it makes me feel uncomfortably heavy, sluggish, stuck. Like I can barely move. Seams, tags and labels leave the ghost feeling of painful, itchy, infected scabs on my skin.

Some of us are lucky to have what I call ‘safe clothes’. Materials and textures that bring relief, rather than distress.

Slipping on a soft, long sleeved cotton t-shirt is like a cool, minty soothing balm, helping us regain a modicum of control for a little while. My ‘safe clothes’ have made me a die-hard outfit repeater, and proud of it too.

There is, of course, the option of not telling people, of trying to nonchalantly say “It’s a little bright in here, I’m going to put my sunglasses on. Please don’t be unkind,” or "I can't wear this sweater, it doesn't feel nice." Although more often than that's followed by: “What? No it’s not", "Stop being silly. You’ll look weird”, “What do you mean? It just feels like wool.” 

And I’ll have to stop myself from bluntly saying, "I can’t wear this because it feels like nine-thousand tiny razor blades have all been sewn together with barbed-wire to create a sweater.”

I find answering the same sensory (and autism) questions over and over exhausting, but at the same time, I feel a strange sense of duty.

I spent my entire life trying to explain things to doctors, to therapists, to family, to friends. It took 19 years before I finally got an accurate diagnosis. I made the mistake of assuming that once I got the diagnosis, a lot of these questions would stop.

It takes a lot of energy to try and break things down and explain them to people, when even remembering how to put your shoes on, or what comes next after brushing your teeth is exhausting.

But, can we make a deal? If I can stretch myself to take the time to try to explain, then maybe others could try to listen to what I say, try to understand what that would feel like, or at least be aware of sensory sensitivities. And then my life could get a little easier, and not only mine, but other autistic peoples’ lives, too.

Maybe, one day, when encountering their own unique gift-sweater hell, an autistic child won’t have to hear, 'It’s just a sweater. Put it on.'

It’s never just a sweater. It’s never 'just' anything when you’re autistic.

What can you do? Make some space. Lots of little things can add up to an overload of sensory information. Which means little things from you can cut this down – try to avoid talking over each other, turn down your music, or even just offer to dim glaring lights.

Make your pledge

Clare

“Hi Clare! Come on in!” He shook my hand and guided me through the doors onto the walkway beside the swimming pool.

I’d come to meet two managers from my sports centre about a request I’d made to have the volume of music in fitness classes turned down.

 I struggle to make out what instructors say and after four months thought I should either speak up or quit. 

And I loved the classes! Doing them had made me fitter, more confident and happier.

Photo of Clare Smith

People with autism struggle to decode speech if there’s background noise, so it wasn’t surprising I was floundering. But you need the music to get everyone going and to have a beat to jump around to.

I’d asked one trainer and she agreed to turn down her music. But a few minutes into the class she stopped. “I’m sorry, that music’s too quiet,” she said. She walked over to the player and turned it back up.

 I was gobsmacked. I struggled on for a few minutes, but then left, feeling humiliated. 

So now I was meeting the high-ups. My hopes that they’d sort it out disappeared as they showed me where they intended to hold the meeting.

The poolside. In that area where parents can sit while their children swim. The area where the shouts of the youngsters echo off the ceiling. Where the bellowing of the aquarobics teacher  punched through the general cacophony.  Where even neurotypical people have to lean in to hear each other.

But because of the nature of the event, I was already only just coping: meeting strangers, discussing something they might see as criticism. I was just about navigating my way through that, so I didn’t notice the ‘surround-sound’ battering my ears.

Within a few minutes though I realised that my anxiety had shot up. I couldn’t hear them properly and the stress of trying to figure out what they said was matched only by my growing anger that this was where they chose to meet me – here! To discuss my difficulty making out speech over background noise!

As soon as I asked to move to somewhere different, they fell over themselves apologising. They hadn’t thought! They didn’t mean it like that!

 They were trying to understand, but their grasp of what it means to be autistic was so minimal, they’d blundered straight into harming rather than helping. 

We talked on for a while but the damage had been done and in the end we gave up.

I thought that would be it. But a friend who runs an Asperger’s charity suggested something different. “Why not get them to run autism-friendly classes?” she said. 

Yeah, right. As if. Why would they? But then I thought again: what could be in it for them?

We went back to see them and asked if they’d pilot a trial run.  “It might be the first in the country!” I said, “You’d get great publicity!” 

“You could try for The National Autistic Society’s Autism Friendly Award,” added my friend.

“And…”  I’d come up with a clincher, “… there’s a whole sector of your customer base you’re missing that this’ll target.”

 Even so, I was surprised they agreed.  But I’m working with them now, designing a class that will deal with all the sensory issues Aspies can have. 

So for starters it’ll be less crowded. If it works – if people sign up for it – it’ll become a fixture.

We stopped fighting each other and looked at how we could make things better for everyone. In the process, they’re learning about Asperger’s just by working with me. I feel better doing something positive. And other people with Asperger’s will have somewhere to keep fit. It’s a win-win-win situation! 

What can you do? Make some space. Lots of little things can add up to an overload of sensory information. Which means little things from you can cut this down – try to avoid talking over each other, turn down your music, or even just offer to dim glaring lights.

Make your pledge