Sharing my very own instruction manual at work
Figuring out how to approach my autism diagnosis at work has been one of the most difficult things for me.
Who do I tell? How much do I tell them? How weird is too weird? How open is too open? What if I seem quite different? Will people still like me?
I wanted to share one thing I did, in the hope that it can be useful for other people “coming out” as autistic at work.
I wrote a document called “A guide to Lauren”. In it, I have explained what autism means for my day-to-day and at work. It also explains how people can help, based on everything I’ve trialled-and-errored my way through so far. I shared it with people I work closely with.
What I shared
Below is exactly what I shared: a user’s guide to Lauren! It covers what autism means for me day-to-day, plus all of the things that I now know are helpful for me at work.
A guide to Lauren
I am autistic. This means I have difficulties with:
Routine and structure — I need a lot of this
Social stuff — this is all very manual for me and therefore draining
Sensory processing — a mix of hyper- and hypo- sensitivities
Below I’ve explained how these things impact me, and what that means at work. I am sharing this with you because that includes things that I may ask for or do, that I would like you to understand. If you have questions, please ask away :)
Routine and structure
What this looks like day-to-day: My life is extremely structured…
If my routine is disrupted, or plans are ambiguous or change a lot, I will end up in a meltdown before long. I need to know exactly what to expect, e.g. 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… 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.
What this means at work:
Last-minute changes of plan can really throw me. The more notice you can give me for meetings, new pieces of work, or any other change, the better.
If something does need to be last minute, you can help me by providing as much info as possible on why the change is happening, and by telling me very specifically what you need.
I sometimes need more time to process information. If you need my input on something that I don’t already know a lot about, send me something to review in advance. You’ll get a much more insightful response!
Knowing what’s coming is important for me. If you need to meet with me, send me an agenda, a question, a document, anything that will help me understand what is going to happen. This is especially useful if it’s a group meeting or workshop: there’s a good chance I’ll drop out of a workshop without this because it’ll be too overwhelming.
I stick quite rigidly to my hours. In part, because work-life balance is important… but also because starting or finishing at an unusual time can completely throw me into limbo for the rest of the day. So I’m quite unlikely to agree to meetings outside of my normal working times!
Transitioning between weekday and weekend routines is quite disorientating. I am therefore a bit protective of my Monday and Friday (and Saturday and Sunday!) schedules, and need to stick to very concrete tasks on those days.
All of this also has positive impacts, e.g. I’m good at making plans, thinking about processes, reviewing papers, and finding details that aren’t right. It also means I quite enjoy things that others find tedious… e.g. checking legal documents, reviewing or editing technical stuff, budgeting (woop).
Social stuff
A key difference in autism for women is the prevalence of masking. Masking means covering up autistic traits, constantly rehearsing conversations, and manually performing learned/mimicked social actions such as facial expressions, body language, tone of voice, dialects, eye contact. It also means manually interpreting these things in others.
For me, like many autistic women, that 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 that much at all, so I do that consciously too… And you can bet your left arm that I won’t look you in the eye unless I’ve consciously decided that now is the appropriate moment to do so (usually just because enough time has passed that it might seem weird not to).
All those things happen automatically in a “neurotypical” brain, but they do not for me. This is why social situations are extremely draining, and why I need to moderate how much effort I put into them, to avoid burning out.
What this means at work:
I really value people who communicate and give feedback in an open and honest way. I naturally tend to take people at their word (not always a great strategy). So if I can be confident that you are saying what you mean, then I don’t have to try so hard to decipher what’s really going on.
Sometimes I will have my camera off during meetings, or do them as a phone call instead, to save having to make my face work. I try to save my energy for calls where it matters more that I can be seen.
I sometimes need time away from Slack or emails to decompress, so I do not always see things straight away.
Meetings are extremely draining for me. If there is a way for us to solve a problem “offline” (everything is online atm, that phrase makes no sense…) then that will help. If you need something straightforward from me, we could agree on a deadline for getting to the same outcome via a Google Doc or via Slack. Thanks to my undying love of routine and structure, you can be very sure you’ll get an answer by then!
Sometimes I forget to do small talk. It doesn’t mean I’m not interested or don’t want to talk to you, I just forget. Often in meeting prep notes I will have some variation of “do small talk”… If you’re someone who doesn’t like that anyway, please tell me and I will stop bothering :)
I will interpret things very literally, so I may get confused or need to clarify things with you later if the language used in a meeting is ambiguous.
I will sometimes drop out of social things last minute, or disappear partway through, because I’ve reached my limit. It is almost never personal ;)
The unhelpful thing about masking is that it makes it very hard for you to know that something is wrong, or how difficult something is, just by looking. A lot of the things that I find really hard, I know from feedback that I appear to find really easy. All I can ask here is that you listen, rather than look. If I’m telling you that something is difficult or that I am struggling, please listen to my words, and not to the smiley confident face you just saw in the meeting.
Sensory processing
What this looks like day-to-day: I have hyper-sensitivities (things that I’m overly sensitive to), and hypo-sensitivities (things that I’m under-ly sensitive to), so I have to deliberately balance things out.
Hyper-sensitivities: Most people’s brains flag most bits of sensory input as “not important”, and these then get filtered out. That doesn’t really happen for me. This is mostly bad, e.g. not being able to filter out background sounds, or the feeling of a label in your clothes. It can also be good, e.g. certain smells are super calming.
Hypo-sensitivities: For me, like a lot of autistic people, my brain does not get enough proprioceptive input (where your body parts are in relation to each other), vestibular input (interpreting movement), or interoceptive input (internal senses e.g. hunger, temperature, tired, etc.). That leads to a lot of background anxiety, because your body doesn’t quite understand where it is, and it may not be meeting all of its physical needs. A partner recently told me that “I feel sick but I don’t know why” should be my catchphrase… usually it’s that I’m too hot, or hungry, or thirsty, but I’ve not noticed, and have to do some trial and error to figure out the answer.
What this means at work:
I need somewhere quiet (noise, sights, smells) to be able to function.
If I ask you to stop making a particular sound (e.g. squeaking a pen) please try and accommodate if you can. If I’ve got to the point of saying something out loud, then it is probably almost physically painful for me to be around. Something like that will fill up my brain completely, and I will be fighting my instincts to just run away.
Sometimes I will fiddle with things or move around during meetings to help balance out sensory issues.
I need to stick to my normal eating times, because having structure around this means it doesn’t matter so much if I don’t notice getting hungry.
If we’re in a meeting room that is very hot or cold, and I look like I am wearing the wrong clothes for that, please do ask me if I am too hot or too cold…! I often won’t notice until I’ve gone quite far in the wrong direction (e.g. shivering or feeling sick), so that can be helpful.
What happened?
Sharing my very own instruction manual has been overwhelmingly positive.
It feels much easier to ask for the things that I need, which is a relief. I don’t feel the need to justify myself so much in certain situations — e.g. having my camera off, or asking for specific info ahead of meetings.
My relationships at work have also benefited. It’s prompted some really open conversations that might never have happened otherwise. Which is great.
A few words of advice, in case you want to do the same
Some advice, based on my experiences so far:
Explaining what autism looks like for you is important. If you are going to speak to people about your diagnosis, try to remember that they may not have a clue about what autism means in practice, or may have an overly stereotyped view of what it means. Especially if you are a woman and/or someone who masks their autistic traits a lot.
Tell people why you’re sharing the information, so they know what you’re expecting. If you are just trying to raise awareness, say that. If you specifically want someone to start approaching meetings differently, tell them that too.
What I did is just one approach. I am fortunate to have very supportive and open-minded colleagues. That is not true for everyone. If you’re not sure what to do, or how people will react: speak to a manager, a trusted colleague, or a friend, and see what they think. My colleagues were a great sounding board for e.g. what amount of detail was useful.
Finally, this is all trial and error. If you’ve got other things that have helped you at work, I’d love to hear.
Lauren x