Category: social communication

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5 minute read Autism camouflaging masking social communication wellbeing

Snapshot: a typical day in the professional life of one Autistic woman…

The Covid-19 pandemic has led to a change in how we carry out our work for all of us – and for many of us that has meant working from home and reduced social contact.

My typical working week has gone from face-to-face meetings, visits, and home or office based work, to almost exclusively working from home with those face-to-face meetings replaced with video calls and most visits postponed. I wrote about zoom fatigue and the analogies it has with Autistic communication, last year.

Yesterday was different. Yesterday I stepped out into the “real” world and was required to drive to the nearest city and check out a potential location that may be suitable for delivering a service…..

And oh my goodness – did I really used to do this every day??!!!!!

Photo by David Marcu on Unsplash

The journey was great, I have always loved my time alone in the car listening to the radio or energising myself with a loud and uplifting tune. It gives me uninterrupted space to prepare my thoughts before appointments, and process them afterwards. In fact, this “thinking time” is something I miss in my working life.

Prior to leaving home I added the name and phone number of the person I was meeting to the notes app on the home screen of my phone. When I have lots to process, I can find it difficult to navigate my phone because I can’t find the right app or read numbers and letters easily. I was familiar with the area of the city I was visiting but used an online map to view the front of the building – this helps me hold an image in my mind of what I am looking for. Needing to look for something when I don’t know what it looks like is a non-starter for me. Potential business clients can help me (and lots of other people) by sending a photo of their building as part of any joining instructions – and if they send one of the person I’m meeting too, then I will be seriously impressed!

It was a frosty morning and I de-iced the car in plenty of time and dug out my warm wool coat from the back of my wardrobe. It has been some time since I wore it and it’s heavy weight and smart appearance was just what I needed to make me feel embodied, confident and business-like. Plus it has a pine cone in one pocket and a squidgy toy in the other, that I can hold and squish and feel without anyone noticing!

I was in the zone, so I got in the car and headed off.

I pulled up to the ticket machine at the multi-storey carpark entrance and wound down my window. I was offered a choice of pressing a button to talk to someone or pressing a big, flashing button with no instructions. I decided that the flashing button would be for the ticket, having reasoned that one doesn’t usually need to hold a conversation with another person in order to use a carpark. Correct! Pressing the button resulted in a ticket shooting out towards me and the barrier lifting up. I smiled to myself and noticed that already my racing mind was consciously thinking through everything – working out what was going on and why; and how I should respond. Those intuitive, “everybody knows how to do that…” activities that many people take for granted, often require considerable processing by myself and other Autistic people, and can result in me appearing slow, confused, stressed, overwhelmed or anxious.

Once parked up I needed to cross the road to the building I was visiting. The 4 lanes of traffic, including a bus lane, were in stark contrast to the country lane I live on, and I had not experienced such a volume, speed and noise of traffic in a long while. I stood at the kerbside, looking right then left, then right again but dared not cross. My brain could not process the speed of the vehicles; and the overwhelming noise meant my eyes couldn’t see properly and I could get no sense of how near or how fast the cars were by using my sense of vision or hearing. I gave my brain and body a few moments to settle and I instructed my feet how to move. Imagine a party game where you are instructing a blindfolded person around an obstacle course; “lift your left leg up a bit, no not that much, move it forward 30 cm, careful now” etc etc – that’s the level of instruction I need to give my body when coordinating movement in certain situations. I cautiously crossed the road once I was ready.

The building I had seen on google maps was right in front of me and I was pleased that I had looked up a photograph before leaving home. I even noticed the restaurant to one side and the shop to the other were exactly as pictured and I felt reassured by this tiny piece of familiarity and predictability. The doorway to the building had 3 panels of buttons for calling the various companies inside. Some had labels and some didn’t. There was a sign saying “Press doorbell for reception” and I looked all over the door from top to bottom but saw no bell and no switch that could be the bell. My eyes went back to the panels on the wall, and I tried to find one that had the name I was looking for amongst the moving mass of letters, numbers and sticky patches where labels had fallen off. I wondered if the sign requesting “Press doorbell…” was referring to one of these buttons on the wall? Perhaps what I think of as a doorbell – a single button on, or right next to a front door – means something different in an office environment? Maybe I could use the internet to search for “what is meant by office doorbell” or “how to find a doorbell amongst a load of buttons” – perhaps if I searched it up online and clicked “images”, I would get to see some examples of what this type of doorbell could look like that I could match to what was in front of me? But I decided against it. I needed to get my brain back on track so that I could attend my meeting.

I pulled out my phone and went to the note taking app on the front screen and called the phone number I had recorded there. No answer. I searched for the main company phone number, thinking that if the receptionist was going to meet me at 10.30am as planned, they would probably be at their reception desk and answer the phone….they didn’t.

I looked back at the panels of buttons and tried to work out the correct protocol for choosing which one to press. After much logical thought and a fair amount of trying to work out the potential impact of me pressing the “wrong” button, I decided to go for the panel that had numbers and one slightly larger button with a picture of a bell on it. I pressed it and waited. A voice came from the tiny speaker and I introduced myself, apologised for probably pressing the wrong button and enquired whether I could be directed to the company I was due to meet with.

All I could hear from the tiny speaker was a mumble of human noises against the backdrop of equally intense roaring traffic, seagulls, slamming doors, people shouting and talking, wind, car horns, bus engines revving, tyre noise against the road, brakes squealing, my breath, my heartbeat in my ears, the creak of windows being opened, the jangle of the door being opened on the shop next door, the delivery men unloading their van, the radio from the same van…..I picked out a few words from the mumble of human noise coming out of the speaker: “other door”, “Chinese”, “right”. I said thank you and walked away. I felt sad.

I considered going home and recalled how on one occasion I drove 150 miles to a meeting and had a similar experience, I left without even entering the building. I reflected on how difficult it is for me navigating a world that my brain processes as overwhelming. I ensured I regulated my senses because I recognised the overwhelm was spilling over from my senses and into my thoughts that were spiralling downwards into “why is it you are so rubbish”. I find it more effective to regulate my senses than challenge my thoughts at times like these. The issue is primarily one of sensory overload rather than anxiety. The anxiety stems from the sensory overload. I was grateful for my loss of smell and taste – the legacy of Covid-19 infection, as the diesel fumes, cigarette smoke and litter smells could have easily tipped me over into meltdown.

I put my hands in pockets and used my sensory items. I stepped back from the doorway and instructed my brain to pull away from tunnelling down into the finer detail and I got myself to look at the bigger picture. I searched for anything that could give me a clue. I walked down the side road, reminding myself that movement is regulating and good at times like this. I swung my arms a bit and made sure my fists weren’t clenched. I did not find the door. I went back to the main street and walked the other way and lo and behold there was a doorway with a sign on it for the company I was visiting.

At this point I stopped. I reminded myself that the people I was meeting did not need to be told about the online map showing the “wrong” door under the business entry for their company. They did not need to be told that I had tried phoning the receptionist just like the joining instructions detailed, but no-one answered. They certainly didn’t need to know about the traffic or the ticket machine buttons or any of the other ****ing buttons! They’d have no interest in my experience of crossing the road. If they asked me how my journey was – they would not be requesting any of this information – they wouldn’t actually be interested in my journey!

Now was the time to regulate myself and rehearse my “eye contact protocol”. Face coverings make this trickier as I tended to look at people’s mouths prior to masks becoming the norm. On video calls I make awesome eye contact because when you look at your laptop camera light it appears you are making eye contact with the person. You don’t even have to look at their face at all or even have it on your screen if you don’t want to!

So I gained entry into the lobby and BAM! the intensity of the lighting gave my brain too much information to process once again. Thankfully my already (fairly) regulated sensory processing system was able to cope and I prepared myself for meeting my host by repeating my mantra of “look directly at the person and say hello, then scan the environment whilst commenting on how nice it is, then make brief eye contact each time the person pauses”. I walked up the stairs, took a big breath through my nose not my mouth – mouth breathing in a mask feels extremely unpleasant, and in I went.

I am sharing this because it is my reality, and I recognised yesterday how far I have come in terms of understanding myself and managing all this. The world has got no easier, but I have become more able to meet my own needs. I no longer wonder why I am so rubbish at life – I’m brilliant at life – it’s just most people don’t have to go through the level of stuff I have to go through to get to a meeting, let alone to cope with the social, communication, sensory and other demands once inside.

This is a snapshot of me on a good day. To get a true picture of a good day I should add in the social anxiety about how I’ll come across in interactions and the anticipatory anxiety about what is going to happen. Plus the additional sensory input from perfume, aftershave and cleaning product smells; food that I need to eat or decline without causing offence; stairs and chairs to navigate without falling over; handshakes or physical contact; and remembering that I probably won’t recognise the signals in my body that tell me I need to drink or use the toilet until the last moment. I will be consciously repeating the protocols for dealing with small talk and making eye contact.

And if this is a good day – consider a bad day! Illness or stress make all the above far more challenging. No safety to regulate myself or seek clarity makes things worse. Masking autism for sustained periods is harmful, but is sadly necessary for me, in order to take part in the world as a professional person.

What will help?

There are some practical examples in this blog. Photos and clear information and joining instructions. Physical environments that are designed to be more accessible from a sensory processing perspective. Improved understanding of what it is like to be autistic –contact me via our website if you’d like to find out about bespoke training for your organisation or for yourself.

What helps me most is having a proactive approach to sensory regulation. I also use mindfulness – not as an exercise or technique that I plan into my day, but as a way of dealing with situations. I have learned to pause and notice and accept how I experience the world before reacting.

This short film is one of Aesop’s fables and I frequently reflect on what it means to me and how I treat myself in my thoughts and behaviour – perhaps you may take some positive meaning from it too? I recognised the need to follow the moral of the tale on my way home from the meeting yesterday – I was proud of myself for handling the run up to the meeting I described in this blog, plus everything that went on once inside – and I considered I could ‘quickly pop into the shops’ on my way home. Of course the additional demands this placed on my sensory processing system overloaded me instantly and I walked away considering I had done done enough brilliant stuff for one day and should give myself a break to recover and recuperate, and not push myself harder.

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5 minute read Autism identity social communication

Authentically Autistic

Photo by Tina Nord on Pexels.com

This brief piece was prompted by a number of discussions I’ve had with people about autistic masking, being authentic and true to your autistic self.

You may like to check out my writing about autistic masking via the menu.

What makes me different?

I’m autistic, so experience the world differently to non-autistic people. My senses work differently – my personal range of sensory experiences is broader than most non-autistic peoples’. I experience some things more intensely (e.g. sound and smell) and others less intensely (e.g. body sensations and balance)

I have less need to form hierarchies than many of my peers – I still love to organise things and compartmentalise them, but we use different systems.

I think about things differently. I tend to consciously think through things that many others find intuitive – and intuitively know things that others have to think about!

So what is the problem?

I am in a minority. A seriously misunderstood minority. This means I often have to hide things like the extent of my sensory overload or my need for clarification.

My logical and literal mindedness puzzles people. My drive for clarity and need for honesty perplexes them.

And often it is NOT a problem. I have integrity, I cannot tolerate inequality. I stand up for what is right regardless of the personal consequences.

So, when is it a problem?

It becomes a problem when I remain dysregulated because I cannot do what I need to do to be in a state where I can learn and thrive. None of us can. But for me, the sensory aspects of the environment – and inside my body (noise, smells, lighting, my emotions) tend to effect me more because my sensory processing works differently.

Being dysregulated always makes thinking, communicating, and looking after myself and others needs, more difficult. That’s the same for all of us.

Humans are social animals. I don’t particularly enjoy socialising and I certainly find humans difficult to understand, but I recognise my social responsibilities. I may not want to hang out with other people for fun – but I choose to have unconditional positive regard for them….. and in fact, some of them are actually quite nice!

When I was younger I would be blunt, straight to the point and say exactly what I thought. I knew I was right. I certainly didn’t aim to be rude. In fact, I thought I was doing people a favour by leaving the bullshit out and getting straight to the point! I saw no need for small talk. I empathised by finding common ground that demonstrated my understanding of the other person’s situation and shared this with them. I used my incredible capacity for problem solving to offer advice, find solutions and share them with others. I wanted to be helpful. My heart was very definitely in the right place.

How was this perceived?

I sometimes came across as rude, self-centred and insensitive.

I am not.

Reflecting on this, it is important to consider that other people don’t necessarily operate in the same way as me. Those sensory and cognitive experiences I listed earlier may be different.

When I appreciate this, I realise how invalidating my responses to others may be. Lets take empathy as an example – a subject I have written about in my personal blogs and for Neuroclastic.

My natural, authentically autistic response to someone telling me something distressing about their own experience is to trawl through my memory for something comparable.

I don’t feel a lot when people share their experiences with me. Other autistic people may be somewhere else in this broad range of sensory experiences and physically feel other peoples pain to such an extent it hurts them too. If I responded with a “yeah well, whatever” to someone’s loss, and my autistic friend with the intense emotional sensations responded with a “omg, that is so awful – look I’m crying too” – neither of us would be much use to the person who was choosing to share their experience with us.

So I developed a technique that uses my very natural abilities of logic and reasoning. I would find something comparable from my own life and tell them about it so they realise that I truly understand.

Except they don’t!

Of course, these genuinely autistic responses can be seen as invalidating for others. And it’s not just issues around empathy where this happens.

If I was to tell someone that they looked dreadful in their new dress when they asked me for my honest opinion, they’d likely be hurt.

I hate lying and I find the games people play where I am meant to know the hidden meanings behind questions, frustrating and disappointing. I am lucky to live in a family where we can be open and honest and not dress things up in untruths.

How can I stay true to myself without hurting others?

As I have matured, I have found ways of remaining authentically me, whilst recognising that other people may be running on a different operating system to the one I’m running on. Expecting other people to appreciate my straight talking just because I’d like them to do that for me, is a non-starter.

I could simply say “I am autistic, I have every right to be autistic and this is how I do things” and expect them to accept this. But they won’t! People don’t. Maybe one day when people understand autism better they will accept our way of being a bit more. In the meantime, I do have people that I can be more blunt with, or skip the small talk. It’s great and is a very small step on a long journey to equality.

Or I could mask my differences and pretend that I am like them too. That I enjoy small talk, that I like to beat around the bush rather than get to the point. That I am happy to lie! But that sucks, and messes with my mental health. I sometimes need to mask my distress and dysregulation in order to feel safer and to blend in – and we all need to behave differently in different situations in order to act appropriately. But long term masking erodes your wellbeing and identity.

How do I find a balance?

The most important consideration goes back to my thoughts on how I treat others – and myself. Unconditional positive regard. Not being an asshole to others or to myself! Recognising our differences and accepting them. Using my desire to find common ground, but not in a way that invalidates other people’s experiences or takes from them and puts the focus on me instead. Not needing to change people, instead accepting them as they are.

I recognise that I am in a neurological minority. The majority of people tend to assume I am like them, because my differences are not usually visible upon first impressions. They should accept me for being me and for being autistic, but they usually don’t.

I want them to treat me in the way that I treat them.

When I am talking with someone that has a different way of being in the world to me, I try and understand how it is for them. Many autistic people do this – it is what makes us so great at masking and camouflaging our autism.

I still use my particular way of empathising to consider that the other person may get an unbearable sensation if I tell them honestly that their dress looks awful on them. Just like I sometimes get an unbearable sensation when I have to make small talk. I consider that they may find our surroundings drab and insignificant and easy to filter out – whereas I am annoyed by the background noise and distracted by their perfume. I hold on to the fact that we are operating on different systems. But I don’t necessarily say all this out loud.

I cannot get them to understand my way of being by forcing it upon them, just like they cannot get me to become less autistic by forcing me to enjoy soap operas and small talk! Nor can I bully them into changing their attitude by blaming or shaming them for simply being born different to me. Nor should they try and bully or “normalise” me or my autistic peers by making us keep still instead of stimming; or keep quiet instead of asking for the clarity we need.

Photo by Pixabay on Pexels.com

We need to do this together…

I would love non-autistic people to put the same amount of effort into understanding autistic people that autistic people often put into understanding them.

If I am going to accept that I need to be diplomatic when telling you about your dress, so that we maintain our positive relationship and you don’t feel hurt; then I’d like you to reduce the amount of effort you unknowingly make me use when trying to understand your true intentions and desires when we are chatting.

We both need to recognise each others intentions – and we may need to get to know each other and see beyond the stereotypes in order to do that.

Autistic people often communicate really well with other autistic people – we clearly don’t have deficits.

When you know me, you will value my honesty. Don’t write people off because they say or do things that seem odd to your way of thinking. If I accidentally upset you, remember that my intentions may not have been the same as your intentions in the same circumstances – and I’ll try and do that for you too.

I will not compromise my values, but I’m happy to adapt my communication style to accommodate you – in fact I do this most of the time already! Please do the same for autistic people.

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5 minute read social communication

How I would like to be treated as an autistic person.

How do I like to be treated? Same as everyone else! With respect, equality, compassion, interest, and kindness. But I am autistic. I am disadvantaged just by existing in a neurotypically biased world. This blog isn’t about how and why I should be treated better – I’m a human being for goodness sake, I should not need to ask for human rights! Instead, I would like to invite you to consider the following analogy:

Imagine that I am not autistic (I am). Imagine that I am not British (I am). Imagine I am French…

I am still human and have the exact same human needs as every other person. I share many customs with other people – lots of similarities with fellow Europeans, noticeable differences with some parts of Asia for instance.

I look similar to lots of people – quite often my French-ness isn’t obvious until I speak. When I am chatting with other French people everything looks ‘normal’. When I am chatting to British people I can sort of fit in – English is a common language after all. When I am trying to chat to Russian people, I struggle, and I am obviously out of place. (My French-ness hasn’t suddenly ‘got worse’ or ‘more severe’ by the way!)

So, assuming I am French, and you are British, how do we communicate? We learn a bit of each other’s languages. We find out about each other’s customs so that instead of finding it weird that I kiss people on the cheek, whereas you shake hands to say hello, we understand and accept this – perhaps we even find it interesting and have a go ourselves!

We understand that we have different body language with different meanings, we accept that one of us is perhaps more reserved – or more demonstrative than the other. We take our time when having conversations to ensure we can process and translate the conversation in our heads, and we doublecheck our understanding. We certainly don’t assume I am stupid or slow just because I have to translate your words into my language to think about it, and then prepare my response back into your language too. And you don’t shout so that I understand better – no one is more able to converse in a foreign language just by slowing down their native tongue, doing some actions, and speaking louder – no matter how often it resorts this!

How do we view each other? Do you think I would be happier if I just acted more British and hid that I was French? Perhaps I could learn English off by heart and speak it fluently – but I’ll never lose my accent or stop thinking in French. It’s ok though, you won’t catch it from me! But will you keep encouraging me to try harder to be more British? Lose the accent so no one knows – it’s a bit embarrassing to have a foreign friend. Perhaps you’ll encourage me to hang out with other French people as they’ll understand me better, and I’ll be happier. Maybe we can argue about whether being French or being British is best, or how I ended up being born in France.

No…No one does any of that unless they are a total racist. So, what is so different about autism? How should we treat autistic people?

In the same ways we respectfully treat our French neighbours…

We learn each other’s languages and find out about each other’s customs. We don’t follow stereotypes about what all French people do – we recognise the diversity within each nationality. We invite each other along and don’t make a big deal out of our differences, but we make gentle accommodations like pointing out in advance things that could be tricky. We are genuinely interested in each other and we share and learn. We certainly never write a French phrase book or scientific article about what it is like being French without consulting someone who actually is French. We use bilingual signage where appropriate. We don’t blame the French person for being rubbish at English or tell them that just because they know how to order a drink or ask directions, they should be able to discuss the finer points of Shakespeare.

If I was treated as a human, a three-dimensional, complicated, complex, valid human being that is different in the same way a French person is different to a British person, my life would be much better.

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5 minute read social communication

Autism and the road to communication

Learning to drive…

Remember your first driving lesson.

“OK, put your hand on the gear stick, press the clutch down with your foot, engage first gear, slowly lift the clutch and release the handbrake and press the accelerator with your other foot all at the same time” – you’re off.

Easy, isn’t it?!

I find that the analogy of learning to drive is useful for describing how social communication frequently feels for me. Most of us who have been driving for years can do it automatically and even hold conversations with passengers and listen to music whilst taking in the road conditions and anticipating any risks or changing road conditions up ahead.

I’m one of those people. I can get in my car or on my motorcycle, intuitively find the controls and I’m off!

In fact, driving – and riding motorbikes and bicycles – are things I find extremely enjoyable. They are in the very small group of physical activities I can do without needing to consciously think about what to do with my body.

Social communication on the other hand is something that has never become automatic, and I assume that after 47 years of trying, it possibly never will. In a conversation I often feel like that learner driver I once was – awkward, painfully self-aware, and a bit clunky on the controls. I might get the order right, and use the controls appropriately, and get from A to B, but my knuckles are white from gripping the mental steering wheel inside my head so hard!

From a communication perspective I can ‘drive’ well enough to pass my test. Like many learners, I possibly have fewer bad habits than some experienced drivers. I probably know the rules of conversation better than many people – I try to be conscientious, thoughtful and considerate. But just like understanding the highway code off by heart – it’s not necessarily the way people “actually” drive. All those rules you’re meant to break – all those things that we know aren’t “real driving”… These things pass me by, and in communication situations, I often feel like a very competent learner who has passed their driving test with no major faults – but is actually not representative of most road users!

Being a mechanic doesn’t help much with driving either. My understanding of people is good, as is my knowledge of vehicles. I know more than the average person about how engines work, the sounds they make when something isn’t quite right, and the way other people drive. I can competently fix someone else’s puncture or service my own bike adequately – much as I have a good understanding of people and can help other people with their communication skills. This doesn’t help me be a better driver though; either in a vehicle or out there socialising.

When I am on familiar social roads I can begin to take in the scenery and enjoy the journey, but if you were to send me across the channel to where they drive on the other side of the road I’d be floundering. Put me in a social situation I’m unsure of and I struggle. I can do what I do, well. A bit like when I moved from Bristol to West Wales – my pulling away from junctions and roundabouts was far faster than needed and fortunately didn’t result in me rear-ending any of the local, laid back drivers that are used to having plenty of time for manoeuvres.

 I can navigate the roads of social communication, but the effort is huge because I’m usually having to consciously work out what to do unless the road is one I have travelled down many times before.  I prefer to keep my social journeys close to home and not venture out at busy times or in bad weather. We all find it helpful when other road users use their indicators properly – who hasn’t felt frustrated by someone indicating left that then turns right?! Why can’t people communicate accurately too and say what they mean and mean what they say?

I’ve been able to talk for over 4 decades and don’t fancy highlighting my social struggles with the equivalent of L Plates. I’d rather other people were courteous and gave me space and time to work out how to navigate through social situations safely and at my own pace, on my own route and under my own control. I wish that interacting with people was as straightforward as driving and I wonder why I have never got from that learner driver feeling of everything being conscious and clunky, to where I can just jump in and enjoy the ride?