On Friday I shut down at work. When my boss saw me, he asked how bad it was, and if I needed to go home. I did need to go home. So – somehow! – I said yes.

It was a very strange moment. I’ve spent the past year or two trying to set up safety mechanisms to cater for happenings just like this. Talking about accommodations. Making creative use of flexitime. Skirting around the issue of “bad days”, delicately, never quite committing myself to describing what it looks like when I am incapable, completely, of existing in company. They’ve seen the irritability, the frustration when I can’t find words, but they’ve never seen the end point. How I can stare at a plate of food and not make the connection to actually eat. When I just switch off and fade out, staring into space. How my system shuts off everything, refusing to process what I see or hear without conscious effort. How everything is an instinctive response. Decision-making is impossible. Something I can no longer force.

Until recently, I would have said no. I would have felt guilty, berated myself for what I am and the decisions that led to this point. I would have sat at my desk all afternoon, struggling through the simplest of tasks. That was the instinct: to hide. A deeply held belief that my identity is shameful, that I do not deserve supports, even those I invested and risked so much to build. But this time, I said yes.

I’ve changed.

Coming out of those places, of shutdowns and meltdowns and overloads, I can’t help but overthink. It’s what drives me to write. Although I am rarely asked, I want to find the words, to paint a picture for people who don’t share these experiences. I want them to know what it’s like for me, why I disappear from the world. I wanted to explore, for myself, why I no longer felt guilty for the sorts of mistakes that led to this shutdown.

The thing is, this week was challenging. A lot of non-routine things were going to happen. The plan was complex in places; the schedule was busy. No red flags jumped out at me, but several – if I had been looking – were distinctly orange. And I was tired going in. Perhaps I should have seen it.

Let’s take a look at those flags. A long evening straight from work: 2 events in a row, buffered by dinner in an unfamiliar pub. Cycling out in unexpected, driving rain. A 9 o’clock meeting the next day. Two. Doable, I thought. Then a nagging headache all morning, artificial meeting room lights too bright to countenance; the sweet, soft relief of Anadin at lunch time, and the feel of my body relaxing, losing tension in quantities I hadn’t recognised I’d carried. Every warning light suddenly flashing. Looking at my schedule for the next morning. Another 9am. And a 10, and an 11. And somewhere to be at 12. Maybe I should reschedule the 10 o’clock. But I had the evening free. I’d be OK.

And that’s where I failed. Because after several weeks of things going right, I’d forgotten my limits. I’d forgotten how too many things, even simple things, can make me fall over so completely. I’d forgotten that one evening to myself, given where I was, wouldn’t be enough to set me up for the next day.

Those orange flags weren’t red. For most people, they probably wouldn’t even be orange. Three meetings in a morning probably wouldn’t even raise a flag in most people’s eyes. But for me, that’s a challenge. And in combination with too many other challenges, that’s a red flag. The guilt isn’t that I fell down. The guilt is that I didn’t act to avert things when I had the chance. The guilt is that I got over-confident. It was going to be OK. I’d been doing fine. But I’m still autistic.

For most people, there is slack in the schedule. A bad day is recoverable. But for me, a week at work can be like running a race.

Picture a distance: the furthest you can run. (Or walk. Or, if you can’t walk, I expect you won’t need this analogy to understand.) Picture yourself at the start of the distance, taking a breath. You’re prepared. You know your pace. You know what you can take. You’ll stride out long, slow, easy. If there’s a hill, you’ll slow down. But you’ll keep going.

It takes some mental effort, pacing that race. You want to finish in a good time. But at the same time, you know exactly how hard you can push. You know if you go too hard, you’ll run out too early. You’ve done it in training, when you were still exploring your limits. You’ve felt that burning in your legs, the weakness, the whole-body exhaustion, wanting nothing more than to drop and curl up on the pavement. You’ve walked home in your running kit, shivering as the sweat cools off your back. Avoiding eye contact with anyone you pass. Wondering what they’re thinking of you. But today is the day you’ve been waiting for. And you’re going to get it right.

Imagine each week starting like that race. You know you can do the distance. You feel confident: in control. But you have to be prepared. You have to carb-load. You have to get enough sleep the night before. And if the route changes at the last minute – a diversion, a longer or steeper road – there’s always the risk that you’ll flake out before the end.

Anyone can screw up a race. You feel bad. It’s one stand-out event, you’ve prepared forever, and you let yourself down. It’s your own fault.

But there’s no need for guilt. Because you pushed yourself. You tried. You misjudged. There was shame; but there was also understanding. It taught you something. You’ll try again next time.

Every time I fall, I feel guilt. But every time I fail, I remind myself that everybody fails. Everybody makes mistakes. I’ll try again next week. And I’ll make it right.

Negotiating power

Very soon I will have to have a difficult conversation. I have to negotiate with someone whose current position is so diametrically opposed to mine that the two of us seem to be overreaching ourselves just trying to meet in the middle. I need that person on my side.

In the past, I’ve rarely bothered to negotiate for my needs. In my experience, just battling through a difficult problem or situation is usually easier than trying to get help from someone else. In terms of emotional input, it’s certainly less costly, although it can have unfortunate consequences for my wellbeing in the short term.

There are a few reasons I tend to deal with my problems independently. The main issue is the difficulty I have in approaching people and starting conversations. Often a problem seems self-contained – perhaps time-limited to just a week or two. I might feel that, within those constraints, I have a good chance of keeping things under control. Then especially if the best person to speak to is someone I’ve never met, or someone I know I find difficult to connect with, just the stress of approaching them is a huge investment that might not be worth the benefits. Perverse as it sounds, there’s also the added uncertainty. Sometimes it’s easier to commit upfront to a bad situation than it is to hope for better, and risk being crushed.

There are other, rarer occasions, when I do look for allies. When my time-limited problem has unexpectedly extended itself, or the immediate effects are just too dire. At that point, the problem is translation. Sometimes the person understands what I’m trying to tell them; and honestly, when everything suddenly and magically gets better (and it’s amazing how often that is the case), I wonder why I don’t do this more often. But if they’re not immediately supportive, I’m still more likely to back away into my shell than to try to bring them around to my point of view.

Over the past year I’ve been building a clearer, more strategic picture of my personal needs and vulnerabilities, so that I can anticipate where and how certain things are likely to go wrong. The idea was that if I knew when a situation was heading south, I could talk to the people involved, try to manage expectations, and maybe even get some help. It only half worked. I’ve learned a lot about situations that might go wrong for me, and am developing increasingly effective tools and workarounds to maintain my own personal wellbeing. But I can’t manage expectations, and I don’t have available in conversation the flexible emotional vocabulary required to persuade others to help me. So despite my efforts, and to my increasing frustration, those little everyday disasters that could so easily have been avoided just keep on happening.

Enter “difficult conversation”, looming ominously on the approaching horizon.

I’m very aware of the skills I lack which are crucial in real time negotiation. I struggle with self-confidence and assertiveness in articulating my needs. I don’t have the ability to think quickly and flexibly in real time. Under pressure, losing verbal fluency and desperate not to antagonise others, I will agree to almost anything rather than incurring judgement on my increasingly autistic communication style. Only later will I realise I can’t deliver on what I’ve promised.

The main things I’m thinking about to prepare myself for this conversation are as follows:

  1. Preparation. Preparation is key. I’ve spent a lot of time thinking about the parameters of this conversation and what I’ll need in order to communicate effectively. That’s before even thinking about the position I’m trying to negotiate for the longer term.
  2. Time. I almost certainly won’t be able to process all the necessary information in real time, in a way that allows us to move constructively towards a compromise. The fear of not getting what I need, reinforced by repeated experience of signing up to things I can’t achieve, will make me dig in my heels – and that kind of stubbornness could go badly for me. I’ve already requested to have more than one meeting, to follow up the issues and give me time to absorb the information before we commit to any kind of agreement.
  3. Expressing my needs. Communication is hard; emotional communication is harder. I’m thinking about how to use scripts or alternative forms of communication to indicate when I need a break or processing time. A friend suggested I could write some scripts on little coloured cards, like the ones you can get for exam revision or as presentation prompts. I’ll need to make sure the messages are agreed and understood in advance, as I won’t have words to explain them at the time.
  4. Self care. This meeting is utterly, unavoidably essential, but it’s going to exhaust me. I’ve arranged to take some leave and work flexibly around the negotiations themselves, so that I can focus all of my attention where it’s needed without worrying about working productively, operating sustainably or avoiding overload. There’s easy food for if (ok: “when”) I get home struggling to untie my own shoelaces. I’ll try not to get run over on the way!

Negotiation is complex; but as a helpful professional reminded me recently, I won’t get anywhere if I don’t ask. I don’t know whether any of this is going to work. I’ll let you know.