Spoiler alert: they are all me.
I have been an adult woman for approximately ten years. A manager of some description for approximately five. And an autistic person for… I suppose my whole life. I just didn’t know it.
Eight months ago, my therapist suggested that I might be autistic.
I already knew quite a lot about autism, from studying brains and working in educational psychology. It wasn’t even the first time I’d thought about it in relation to me. The problem was, although a lot of parts fit, it didn’t 100% add up. I have lots of friends, a good career, I can have decent conversations. Sure, all those things can completely break me, but… I just don’t “seem” autistic enough. Whatever that means.
Then I did some research into how autism can look different in women.
I heard women speak about how much energy they expend masking their autistic traits. About how manual that can make even basic conversations.
It was like hearing someone read aloud from my brain.
Everything suddenly made sense. All these seemingly unrelated threads actually fitted together perfectly. They explained my constant-and-previously-mysterious anxiety. The sensory issues, the desperate need for routine and predictability, the illness-inducing impact of other humans (no offence).
Four months ago, I received a formal diagnosis. It has been a relief. It has also been a totally mind-boggling thing to discover at this point in my life. There is a lot to piece together. But it feels like I am slowly going from a tangled mess of non-descript anxiety to a nicely structured, and predictably anxious, person-shaped thing. Which is good.
I have spent the last few months re-processing pretty much everything about my life, past and present, in light of my diagnosis. That includes how I do my job.
I am going to describe what I have learnt so far about being autistic at work.
1. Most people don’t know very much about autism.
Most people don’t know very much about autism, or what it means in practice. It is worth bearing this in mind if you are thinking of sharing a diagnosis with colleagues.
In the interests of starting on level ground, autism for me looks like:
Routine stuff → I need a lot of structure and routine. Without this I get stuck. My brain melts very quickly if plans start changing.
Social stuff → This is all very manual and therefore draining. Like many autistic women, I have learnt to mask my autistic traits to “fit in”.
Sensory stuff → A mix of hypo- and hyper-sensitivities. I need to deliberately balance these out, else they escalate through the day.
I’ll talk about my experiences in terms of these categories.
2. Routine stuff: I need (even) more structure than I thought.
People who know me know that I am naturally very structured and organised. My Dad has described me as an “organisational whirlwind” (I think fondly!?) on more than one occasion. I’m often asked to give training or support to people on things like time management and prioritisation.
But these aren’t deliberately honed professional skills. They’re daily survival mechanisms. If I don’t know exactly what is going to happen, why it is going to happen, at what time and in what order, or if plans keep changing, I’ll be heading for a meltdown before long.
What this looks like
I need to know exactly what to expect. Day-to-day this includes things like where to cross a road while walking (if I can’t work it out from street view, I might not go), exactly how everything in my cupboards is laid out, what I’ll eat for every meal two weeks in advance… Probably a thousand others. The period between not knowing these things and figuring them out feels horrible and chaotic, and I can’t think straight until it’s done.
At work, this means I spend a lot of time looking at my calendar, mentally rehearsing what is going to happen that day or that week, or next week. Who will be there, what it will feel like, what I need to do to prepare. It means that without a very specific plan, I feel lost. It means that workshops or meetings where I don’t know exactly what is going to happen are extremely daunting. I could spend a full week imagining a workshop I’ve been invited to, only to drop out at the last minute because it still feels too uncertain and unsettling.
It also means that I am very good at identifying gaps, planning projects, structuring things, and designing processes. You know, all the exciting stuff that everyone finds fun.
So, what to do?
Since my diagnosis, I’ve made a few changes in the “routine stuff” category. I now have a whiteboard with my routine for the day, plus some standard routines — one for getting up, one for coming home — so that I can stop going over them in my brain all the time.
I’ve started asking for more explicit information about socials or meetings at work, to mentally prepare. That has helped a lot, especially on the social side. There are events that I would previously have dropped out of that, with a bit more information, I’ve felt comfortable attending.
A lot of things that help me here would probably help others too. And they aren’t really much work for anyone else. It’s just about getting into the habit of knowing when to ask, and what for.
3. Social stuff: masking makes meetings exhausting.
Masking means covering up autistic traits, constantly rehearsing conversations, and manually performing learned or mimicked social actions. Things like facial expressions, body language, tone of voice, dialects, eye contact, etc. that others do without thinking.
For me, like many autistic women, I have spent my life learning to mask my autistic traits to fit into a neurotypical world.
What this looks like
Masking means I endlessly rehearse conversations, no matter how trivial. When a real-life conversation veers from my “script”, as of course it often does in meetings, I can go totally blank and have to really force myself back on track. Why did they not stick to the script that I made up in my head!? Who can possibly say.
It also means I am consciously referring back to books and TV shows about body language or facial expressions, to determine what the thing you just did with your body or your face means about how you are feeling. Left unsupervised, my face actually doesn’t do much at all, so I do that manually too… And you can bet your left arm I won’t look you in the eye unless I’ve consciously decided that now is the appropriate moment to do so.
All those things happen automatically in a neurotypical brain, but they do not for me. This makes meetings — well, any social interaction — extremely draining. I need to learn to moderate how much effort I put in, to avoid burning out.
So, what to do?
I have not yet worked out how or if I can drop my “mask”, to help reduce that effort. The idea of coming across differently to people scares me. I don’t know how they’ll react to that Lauren. To be honest, I’m not sure how I’ll react to that Lauren. We haven’t often met.
Awareness of my diagnosis is not going to change the fact that meetings are very difficult. But it has already helped guide me to change my environment a bit. I’ve been spreading out non-urgent meetings more, making sure there are gaps in my diary, and trying to resolve things without a meeting where I can.
I have also started turning my camera off for some meetings. That way, operating my face and my body language doesn’t take up so much brain space.
4. Sensory stuff: I might just need to work from home forever.
For most people, most external stimuli get flagged as “not important” and are then filtered out. My brain does not do that, which can be overwhelming.
It also does not get enough internal stimulus. That includes proprioceptive input on where my limbs are, vestibular input about movement, and signals to let me know that I am e.g. too hungry or too hot. All of that causes a lot of background anxiety to build up through the day. I am still trial-and-erroring my way through learning how to actively balance those things out.
Awareness of the internal stuff has had a huge impact on me, and I’m writing about that elsewhere. I’ll just focus on external stuff here.
What this looks like
I was reasonably aware of my external sensory issues before my diagnosis. I knew that I could have quite physical reactions to sounds or smells that bother me. I knew that I could be kept awake for hours at night just because I couldn’t stop thinking about the feel of my toenails against the covers, or my hair on my neck, or my own breath on my skin.
I’ve been working from home for over a year now, thanks(?) to the pandemic. Not having to deal with a noisy commute, or a very brightly lit office, full of people who could move around or speak or eat or make sudden loud sounds at any moment, has had a huge impact. And I’m certainly not alone in that.
Just thinking about being in that kind of environment again puts me very on edge. There were days when I had become so overwhelmed by my commute that I could barely think or speak by the time I arrived at work. Sometimes I had to turn around and go straight back home again. It felt super frustrating, and silly, because I could never explain to people what was wrong — myself included.
What to do?
With the context of my diagnosis, those reactions all make much more sense. That doesn’t change what the outcome would be in the future. I am still going to get overwhelmed. Probably quite a lot. But it does mean I can finally give myself a break for finding those things so hard in the first place.
It also means I should work from home a lot more/forever. And, for when I am in the office, that I will need to ask for some adjustments.
Now what…?
There has been a lot to process. And this is probably just the tip of the iceberg.
Every day I’m testing things out. Learning what works, what doesn’t. Trying to find a line between feeling like I’m still the same person, while also getting to know a version of me who I’ve not spent much time with before. Which can be quite scary and overwhelming at times.
I’m very lucky to have lots of amazing colleagues around me at Gousto, and I am so grateful for their support. It has made talking about this, and adjusting back to work, way less hard than I know it can be for others in my situation.
I’ll end with a few suggestions.
1. Sensory stuff: I am not unique in preferring a quieter, more controlled space to work. Sensory processing difficulties will likely mean that this has a more physical impact on me than it would on most people. But the things that make a space lots easier for me will make it at least a bit easier for most people. Think about how you manage sensory inputs (lighting, sounds, kitchen smells, expectations around uniform) in your space. If you know certain people are extra sensitive: ask them about it.
2. Routine stuff: As above, a lot of the things that help me here are helpful for others too. I’m sure my introverted colleagues would also welcome more prior warning on meeting content, for example. If done consistently, that means you get a wider range of people more able to contribute and feel heard, in a wider range of settings. Which is good for everyone.
3. Social stuff: Everyone needs to manage their energy, but my suggestion here is a bit more autism-specific… Don’t assume that what you’re seeing is always what you’re getting. As someone who has spent a lifetime masking to fit into a neurotypical world, I now need you to listen, not look. If I am saying that something is difficult, I need you to believe my words. Not the smiley confident face you just saw in the meeting.
Lauren x