Taking up space – more musings on meetings

I wanted to start this blog post with a link, but I can’t, because there are just too many of them. So I’ll start in my own voice and leave you to Google the rest.

The reason I wanted the link is because I’m starting from a concept that I’d heard before today only once, uniquely voiced. It’s around the issue of taking up space. I can’t remember where I read it and I wish I could, because I would love to have shared that post. But as I found out when searching for that link, this is a pretty well established thing. The idea that a certain type of person – that strangely indefinable “normal” person – has the implicit right to take up space. They don’t even need to ask. They just know.

As a person who is definitely not “normal”, I don’t honestly know what this person looks like. I know they exist – I have seen them and heard them and felt their impacts in the world – but in many cases my experience is not of individuals but of the faceless roar of “public opinion”, a surge of formless consensus that flows like the oncoming tide and cannot be pinned down. Who are these people, so many people, blessed with the implicit right to exist and the privilege not to know it? Probably, they are neurotypical. Probably, they are male. Possibly – at least if living in the “Western World” – they are white. And almost certainly, they are not disabled.

That’s not exactly what I’m here to write about, but I think it’s where to start. It seems to fit.

As a not-normal person, I have not the right to take up space. I can know this, although I cannot define “normal”. Like many in minority groups, I have learned the need to ask, rather than to expect any given space to suit my needs. For most of my life, I didn’t even know that I could ask. Often, even now, I am astounded by the number of options available to me that I’d assumed were simply “not allowed”. It’s simultaneously frustrating and liberating. To know that I can ask – and thus to be forced to take responsibility, constantly, for things that so many others can take as read.

But I digress. It’s not actually space that I wanted to talk about today. It’s time.

I have a lot of respect for people’s time, particularly at work. Perhaps it’s because of the difficulties I have with executive function and time management that I hate to interrupt my colleagues. I set high standards for the level of effort and time I should invest in tackling a problem before enlisting another’s aid, because I know how much those tiny tasks can cost. And in this way I make myself small. As if I have no right to take up time.

I believe my learned understanding that I don’t have a right to take up space translated into trying to minimise the amount of others’ time I “wasted”, by strictly limiting the amount of time I inflicted my presence upon them. I’m only just learning how many ways in which that is wrong! Not only the excessive quantities of my own time I’ve spent over the years struggling with problems that could have been solved in minutes, but in a wider strategic context: of ever getting any useful work done at all.

Which is where meetings come in.

I don’t like meetings. They are confusing, difficult to navigate, and can even be dangerous. But surprisingly, they do have their uses.

Traditionally, in the spirit of taking up as little space-time as possible, I’ve diligently avoided extended workplace face time. I’ve limited meetings to trying to communicate necessary information only, being focused and concise in my interactions to the point of extreme. I’ve felt fear at the lack of an agenda and struggled with the wasted hours spent repeating in circles what’s been discussed and decided innumerable times, and it seems to me will go on forever being discussed, never reaching a logical conclusion. And yet, eventually, it does. Which is the point I’ve been missing.

By restricting myself in this way, holding back from encroaching onto this precious sphere of time, I’ve lost out on some vital moments I could have learned from. I’m starting to realise that this slow, incremental progress is what makes things happen. Decisions aren’t made on the basis of evidence, considered clearly and openly and presented without guile. Decisions are made in the gut, by the inch. Innovative intentions to action are aired early, months before they are expected to take fruit. Results are drip-fed, subtly, constantly; like water carving a path through rock they gradually make a place for themselves in the shared consensus. By the time the final report is complete, the decision has already been made.

I’ve learned that I have to be much slower, less “efficient” and more expansive. I have to introduce people to an idea early on, and keep plugging it so that it stays in their mind. Practically speaking, this means arranging lots of meetings, and wasting a lot of time. But it’s time that others don’t seem to see as wasted. It’s the way we get things done.

I’m also finding out how much I can learn from what seems at first like a very inefficient use of company time. Counterintuitively, as long as a meeting has a goal, it doesn’t matter if the event becomes unfocused or the conversation strays. When arranging meetings myself I’ve found it’s a good idea to book a long slot for a small goal, as sometimes we want to discuss details or get off track. The extra time, instead of frustrating people, tends to ignite our imaginations – with less time pressure and the freedom to explore, we cover more ground. For science meetings, now, I always book a room for longer than we’ll need. Because it won’t be a waste when we use it.

Reflecting back on my “meetings” series a year ago: I’m learning. While I still struggle in meetings organised by other people, having used them myself to get things done I can understand a bit better now how they are supposed to work. Things don’t seem so hopeless as they did back then. As long as I’m looking after myself properly and have some resilience, I can adapt to make these traditionally NT-friendly spaces work for me. Which I could never have learned until I realised I had the right to exist. To take up space, and time.

Almost empathy

I had a conversation with someone a little while ago which got quite involved. We were discussing some very deep feelings about ourselves and each other; we’d covered some difficult ground and were getting pretty emotional. And then out of the blue, apparently I showed something that was “almost empathy”.

It’s been years since I bit someone’s head off like that in public. I’ve got so used to keeping my responses under wraps. But it happened.

I’m not usually so jumpy over precise choice of words – at least not in reciprocal conversation. Having my own issues with finding the right words in the moment, I don’t tend to attach significance to this sort of thing. But the word itself and the way it came out – it wasn’t even patronising. It was encouraging, even approving. But spoken as if it were obvious to everyone present just how big a deal it would be for someone like me to be showing empathy.

Actually, of course, it’s impossible for autistic people to show real empathy*. So it was only “almost empathy”.

Empathy is something that comes up a lot in the autism literature, good and bad. It’s not as all-pervasive as it has been in the past, and many organisations and individuals are now actively refuting the misconception that “lack of empathy” is an autistic trait. But it’s still out there. And it bites.

In many ways, I would say I’m more practised than most at putting myself into another’s shoes. I feel deeply what others feel. I can’t always respond at the same time as they’re talking to me, while I’m processing their words – but that’s a multitasking thing. Often I miss the opportunity to express my response in a “socially acceptable” way; and of course there is only that one brief chance, swiftly evolving into the dangerous territory of dwelling on the subject. This, of course, makes everyone feel awkward – and ironically, will probably get me accused of insensitivity for precisely that reason! When timing is important, should you make the expression late and risk further distress to the recipient, or let it pass?

As a rule, I don’t express sympathy or empathy in group settings. It seems to me the considerate thing is to respect the feelings of the distressed person, so withholding a response that might cause further discomfort seems natural. Even one-on-one I rarely risk responding outside the few people I know won’t be uncomfortable with my delayed processing speed. There’s the fear of not being able to communicate my feelings appropriately, stepping over some invisible line to trespass onto deeper, more personal terrain. But of course, never to be seen expressing empathy can lead more confident individuals to believe I do not feel. They cannot read or respond to me any better than I can read or respond to them. Yet their ability to feel, to take perspective and to empathise, is never called into question.

You may not see it. You may not feel it. But there is nothing “almost” about my empathy.

* Sarcasm implied

Perilous meetings, part 3: is there another way?

I have to admit, I’ve been putting off writing this post for a while. As in, months. Maybe more. I don’t like to write about things until my understanding is complete. Perfectionism is a problem for me.

Sometimes in life, you can know you don’t have all the information, but you have to act on it anyway. Time doesn’t stop for me to make sense of what I’m doing. I am acting on this understanding now, incomplete or immature as it may be. So I will try not to be ashamed of sharing it with you.

The last two posts I’ve written were about the dangers of workplace meetings, and the methods I use to determine whether it’s worth the risk. Today’s post takes a more positive stance, asking: what’s good about meetings, and can I reap any of those benefits elsewhere?

And that quickly, I am out of my depth!

From my analytical standpoint I think there are two main reasons why meetings are, in principle, a good thing. Firstly, and quite simply, information exchange. A lot of things can be discussed in emails or reported in briefings, but neither of these quite matches the immediate efficiency of reciprocal conversation. My difficulties with speech are quite subtle – enough that I will be blamed for my “inappropriate word choice” as harshly as if the intention were to offend – and although I’ve thought about script cards I can’t quite bring myself to use them, for fear of being told I’m over-dramatising. So verbal, in person conversation does fill a unique niche for me – as for many people – that is very difficult to replace.

The other reason is really a variety of reasons, clustered weakly under a heading I could perhaps designate as “connection”. The very act of being visibly present and participating in discussions creates ripples: subtle effects on the interpersonal relationships of those involved. The nebulous concepts of approachability and trust seem to hinge on the contents of these reciprocal interactions. It’s about “staying in touch”, “maintaining an open dialogue”. If I were feeling cynical and utterly unsympathetic to human foibles, I might say it’s about reminding people you exist. But it’s an unfortunate reality that if you, like me, avoid group coffee breaks and water cooler small talk, you may find the only remaining option for connection hinges on an effective presence in team meetings.

Intellectually, I can see how it might be possible to achieve things in unstructured meetings. From what I’ve observed of social interactions, neurotypical people can and do select the focus, progress discussions and make firm decisions in conversation that they then act upon. But my experience as an autistic person is that I can’t do that. Not in social settings, and not in work meetings. I just can’t keep track. So I need to find another way.

There are a number of things I do at work to try to fill the gaps that “risk management” can create. Some of these are relatively easy. I keep on top of my emails and the news on our Intranet. If there’s something I’m aware of that I can’t find information on, I’ll email someone to find out more. Wherever possible I stay ahead of changes in policy or procedures by looking up the written documentation. I also have regular chats with my line manager, where I ask explicitly for updates on anything that might affect my work or job role. Such a proactive approach may seem like overkill, but it helps me to see straight away where I might need more information, and to avoid any unpleasant surprises.

But for reciprocal interactions, one-on-one meetings have been a complete revelation. I wrote about when I first discovered this, and have done my best since then to build on that insight. Now I keep up with some colleagues and contacts through coffee breaks, where I can practise handling the flow of conversation between work projects and outside interests. And while I can’t be completely confident in the attribution, I am starting to see a difference in how often those colleagues approach me, and the level of trust they show in my technical judgement. We’re working better together since I started experimenting with this form of connection.

Of course, one-on-one meetings can’t cover everything, and there are times when it really is essential to have everyone in the same room. I’ve noticed that people – including myself, when sufficiently relaxed – sometimes need the context of a wider conversation to bring the right thought to mind. And it’s not uncommon that, while one person might have most of the pieces to one particular puzzle, the different pieces others bring mean that sometimes you don’t quite know how the picture will look until everyone has had their say. Most of my team work quite independently on our projects, so it’s usually possible to slot extra pieces one by one into an already clear picture, but it doesn’t always happen that way.

These meetings are as risky and difficult to deal with as any other. But I find that by pacing myself, being aware of meeting goals and avoiding less constructive group settings, I can save myself to contribute more effectively to these essential interactions.

I’d like to say I’ve got the balance right, and it’s certainly true that I’m seeing improvements; but this is very much a work in progress. Recently workplace meetings have got harder and harder for me. Although there are many good reasons for this, it’s tricky to break out of the spiral of low confidence repeated “failures” can bring. The final piece of the puzzle, ironically, may be to ask for help from other members of my team. I’m not quite there yet, but I think I’m moving in the right direction! Until then I’ll keep pacing myself: building trust through one-to-ones, avoiding risky situations, and saving myself for those larger workshops where there really is no other way.

Baby steps 🙂

Perilous meetings, part 2: to go or not to go?

In my last post I talked about how meetings can be very uncomfortable, ineffective, and even dangerous for people on the spectrum. But in a culture where a lot of useful information is spread through meetings and discussions, there are obvious downsides to systematic avoidance. So what to do?

For me, the question of whether or not to attend a meeting requires clear assessment of risk. I weigh up the costs and benefits on a case-by-case basis to make my decision. I might also consider potential workarounds. I suspect this sort of systematic process is quite common in the higher levels of management and leadership, where individuals have learned through experience that time is the most precious of resources. What’s interesting my analysis is, ironically, the abstract and subjective nature of the costs involved.

The first question I ask myself on receiving a meeting invite – and one I’m proud to share with the most successful leaders and managers – is “why”? What is this meeting trying to achieve; and can I contribute to that aim? Is there any other reason for me to be there? If not, I – we – politely decline.

After the initial “why” filter, the second stage is where our methods diverge. Where leaders base this part of the decision on the value of their time – a concrete, measurable cost – my analysis must, by necessity, be more subjective. Of course, I do try my absolute best to make it as quantitative as possible!

The “workplace meetings risk matrix” works for me like any other. The likelihood of something going wrong (usually around someone else being affronted) depends on a few things: how important the meeting is to me, how complex the information I’d like to obtain or contribute, and my background anxiety level. It’s also related to who will be at the meeting. While most of my colleagues are constructive, there are a couple who raise red flags for me. The overall number of people can also be important: up to a point (where the “meeting” becomes a “briefing”), more people means more complexity, with a higher risk of losing track.

The impact of any problem that occurs relates primarily to who will be at the meeting: whether they’ve had any autism-related training, and their likely reaction to a perceived affront. In some cases, there can be also be much more serious risks to business reputation – although this is very rarely a part of my role. But if I don’t know any person attending, I have to assume the worst. So if I’m struggling to mask that day and the meeting involves an external visitor, I have to say “no”.

The third stage, maybe slightly less intuitively, is to assess the risk of not going. It’s easy when anxiety is running high to avoid every interaction that isn’t strictly essential. But there’s a risk in doing that too often: it damages my reputation, and can isolate me from my team and from the information I need to work effectively. So I look at the benefits again, and weigh up the costs of not realising those benefits. I also think at this point about whether there’s any other way of achieving some or all of those benefits – which is a topic for another post.

I won’t pretend this method is fool-proof. Sometimes I’ve judged a situation wrongly, or discounted an individual effect. And sometimes there just isn’t a right answer. But if I follow the process, overall, I can get a pretty effective balance.

Having run through the “meetings risk matrix”, there are two more areas I want to explore around dealing positively with workplace interactions. In my next post I’ll consider the multiple benefits that meetings achieve for non-autistic people, and suggest some alternative methods I’ve used to pursue those goals.

But it’s also important not to neglect the emotional impact of this type of thinking, which can easily descend into self-flagellation, depression and despair. So I want to take a moment to be clear that it is not us as autistic people who are inherently risks or liabilities. We can be aware, but we cannot take responsibility for the irrational judgements of others; and we should not try. It takes courage to accept that others’ thinking, however wrong, cannot easily be changed, and strength to work within the narrow boundaries of those misconceptions. I’ll tackle this in more detail in a later post. But I want to finish by saying that despite our difficulties, I don’t believe for one second that my autism, or yours, is a weakness. We are strong. We work hard. And we can succeed.

The perils of workplace meetings

The statistics for autistic adults in employment in the UK are bleak. Despite the similarity in distribution of intelligences on and off the spectrum, a mere 16% of adults with autism are in full time paid employment, compared to around a 75% employment rate for the total population of the UK. This factor of five difference in employability is widely attributed to the difficulties autistic people have, not with work itself, but with the social and political expectations of the workplace. I suspect that executive function and time management / perception issues may also play a role here. But in the socio-political arena, not least of the pitfalls awaiting us is the workplace meeting.

The issue of workplace meetings is huge for me, and much too large to deal with in one post! I’ll make a start here by sketching out the intricate, inconvenient little details that add up to explain why meetings can be such a tricky environment for autistic people – and the equally intricate little workarounds I use to chip away at the problem.

Meetings can be difficult for a variety of reasons. First, verbal dialogue. Some autistics (including me) have difficulty with short term memory, and struggle to hold verbal information in mind. This is a characteristic we share with others in the neurodiverse community, notably dyslexics. In offices with a culture of unstructured meetings, often lacking an agenda or minuted actions, it is easy for us to miss or misunderstand what is going on and what we are required to do.

Secondly, processing speed. The nature of conversation is to flow, sometimes rapidly, from one person and one topic to the next. Many of us on the spectrum need time to assimilate and consider the facts as they come in. Again, particularly in unstructured meetings, I often find my responses or questions arise too late, when the group has moved on to another thing. If I interrupt then, I disrupt the conversation; but if I don’t, I cannot contribute, and decisions are made without me.

Thirdly, when and how to speak. This is an area of immediate risk – for me, at least. It’s well recognised that the natural language of autistics is literal and direct, and that many of us don’t automatically modulate our vocal tone. To speak up quickly and avoid missing what is often the only opportunity – after insufficient processing time and with the anxiety of not completely assimilating the verbal dialogue – is to risk accusations of rudeness, insensitivity or disrespect. But not speaking carries the more insidious risk: of not understanding, not executing the correct actions, and ultimately of losing trust and underperforming professionally. Not forgetting that remaining silent prevents us from making our own, valuable contributions to these conversations.

I decided some time ago to choose the immediate risk of speaking in meetings. Accumulating experience, I began to recognise that my insights and experience could be important, even crucial to success. I’ve come to understand and believe very strongly that everyone on the team has something to contribute toward improving our products and processes; and that by not contributing myself, I would not be fulfilling one of the key responsibilities of my role.

Having said that: on a daily basis, maintaining confidence in meetings is one of the most difficult things I ever have to do. My style of communication is quite direct, honest and upfront, and I don’t hesitate to ask questions if unclear. The combination of being young and relatively intelligent, and of outwardly taking people at face value rather than on reputation, leads certain individuals to interpret this as a personal affront. (I suspect the fact that I am also female only compounds this issue, given the jarring disconnect between the stereotypical submissive young woman and the competent, questioning scientist that I like to project.) There is always the risk, therefore, especially in meetings with particularly well-established or tender egos, that I will be judged on the lack of soft edges in these interactions rather than the content of my message. Having confidence misinterpreted as arrogance and straightforwardness as lack of respect causes the sort of unquantifiable damage that can lead to the end of a career. So there is always pressure, and there is always fear.

There are a few tricks I can use to reduce the risk of workplace meetings. I have an agreement with my manager to get an agenda or “goal statement” in advance of each meeting, to help me follow the changes in topic. If I need to, I can ask for actions to be summarised in writing, at the end of or after the meeting. But it’s rarely enough to deal with the issues of tone and “word choice” – using the straightforward language that comes naturally to me.

I’ve had to accept, reluctantly, that the likely prognosis for any given meeting I’m invited to will be negative. But there are methods I can use to swing those odds back in my favour. In later posts I’ll describe parts of the wider, strategic approach I’m using to navigate the meeting culture in my organisation, and the benefits I’m starting to see in my performance and wellbeing over the longer term.

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.

Writing less; running more

A short post today as it’s all I have in me.

The title says it, mostly. Not completely.

Life feels somewhat precarious, and has for a while. Recently I had a very bad experience at work. Once the dust had cleared, among other things, it made me realise I have to start standing up for myself and being clear about my needs. For someone with anxiety issues, limited emotional vocabulary and absolutely zero confidence in her negotiating capabilities, this is a big deal. It’s taking a lot out of me.

For the first time in my life, over the past few weeks, I’ve started losing speech. Not be able to find the right words, or having to make several attempts, isn’t new for me – but not being able to get any words out at all, is. It’s an anxiety thing: I think it’s what Tony Attwood calls “selective mutism”. It’s very frightening. Objectively, it’s not happening often; but it’s enough now and in certain very public contexts that I need to have workarounds.

I’m currently balancing various parallel processes to protect my wellbeing, advocate for myself and stabilise my position. All of them involve communication, some with strangers (although, thankfully, I’ve managed to kick everything off without using a telephone. Small mercies). Being pretty awful at initiating contacts, executive function, planning and multi-tasking, and with the additional fear of losing my words, this is a significant challenge.

While the weather is good, running is a great way to escape from all that. I’m needing that a lot lately.

In the meantime, words are expensive. Meaningful words, doubly so. I’d dearly love to be posting something every week, but I’m not sure I’ll have it in me; and if I do it probably won’t be of the standard I’d like. So this is an apology for fewer (or bad quality) words, but also an assurance that this won’t go on forever. Hopefully I’ll be back with you soon!

Communication: taking the risk

Autism is a wonderfully complex thing. The word incorporates a spectrum of differences, abilities and disabilities so broad that if asked “what is autism”, I wouldn’t even know where to start. It’s a difference in perspective so vast that you have to break down the whole other reality to build a new picture, right from the bottom up.

In amongst the stinking miasma of misinformation, oversimplification and stereotype surrounding autism, non-autistic experts have grasped a few grains of truth. One is that many autistics genuinely struggle with verbal (spoken and written) communication. In my opinion the experts understate this problem, particularly with Asperger syndrome. Despite being articulate on a number of unusual topics, words in general do not come easily to me.

Coupled with an inability to multi-task, struggling to put concepts into words presents some very real and complex problems. When dealing with human interactions, realistically, I have three options available to me. I can communicate a message using clear and direct words. I can speak in indirect words, engaging in small talk and surface emotional processing. Or I can mirror the body language that is expected of me in a social situation, and which also does not come naturally.

In practise, I never mirror body language. This is because I will always need to use words at some point to interact, and so am never in the situation where neither communication nor indirect words need to take place. I know some of the theory around body language, but it was never really worth learning as when it comes down to it, I cannot apply that knowledge in real time.

I do speak in indirect words. This is because I recognise the importance of others’ feelings. In its most mercenary form, putting effort into making people feel comfortable makes them more likely to approach me for help, with offers of inclusion or of information – all of which are things I like and want to encourage. But further than that, I don’t want people to be uncomfortable around me. I genuinely care about fulfilling others’ emotional needs.

Speaking indirectly comes at a cost. Think of it in terms of learning a language. Normally when you learn a foreign language, the first stage is passive: the listening. That doesn’t mean you can’t say words. When babies learn to talk, they start by echoing a few words. But everybody understands that the actual words used are meaningless. (In autism this manifests in a behaviour called echolalia. This can be extremely subtle and difficult to detect, and I use it probably more than I realise. But that’s a whole other post!)

Learning to say words – starting with those that are easiest to articulate – comes before the stage where those words are used for communication. To communicate, you have to know the meaning. You learn the meaning much more gradually, by hearing how others use words, and in what contexts. You have to understand how that language is used before you can start to use it.

Autistics like me notoriously have problems understanding normal language. The problem manifests around things like implication and context, and is often described in terms of the autistic person taking things too literally. Sometimes this is characterised as a “delay” in “language skills”. I don’t know whether this is true – I probably won’t know until I am old enough to have waited out the delay – but what I do know is that to us, language comes differently. We use the same words, but in a very different way. And when you don’t phrase things clearly and unambiguously, we don’t always understand what you are saying.

When you consider this fact, it makes a lot of sense that autistic people actually cannot use words in an indirect way reliably to communicate a message. If we can’t interpret indirect language reliably as it was meant (although many of us do get better at this over our lifetimes), then how could we possibly use it?

Think about it another way: as a code. Non-autistic people don’t use words according to their literal meaning. Instead, they communicate in code. First, they translate their literal meaning into some different words. It looks like evasion to me, because I don’t understand it, but it has a clear meaning to them. When another non-autistic person hears the code, they have the right key to translate it back into meaning. I don’t have the key – so I have to ask for clarification. Then when I make my own indirect messages, with words that I hope will help others feel comfortable, I don’t do the translation right, and the recipient might not get the message. It can take several trial-and-error attempts for the message to get through.

A lot of the time, this is OK. With technical communications, for example, I’ve learned it’s worth following up conversations in writing anyway. In that format people seem a lot more comfortable being direct, so we can make sure the information has been correctly exchanged. At other times, delay can be a frustrating but necessary price to pay for maintaining good working relationships. But there are also times, when the personal or professional cost of miscommunication is high, when my scattergun approach of using random indirect words is incapable of meeting the immediate need.

And therein lies the rub. Because if I communicate efficiently, using the only reliable tools I have available to me, this is not socially acceptable.

It would be easy for me at this point to rant and rave about the social expectations of a majority non-autistic society and how they must be deliberately marginalising me for my differences. But it’s more complicated than that. I know that in tricky situations, where the concepts are nuanced and hard to articulate, I will appear at best blunt, and at worse outright offensive. The effort it takes me to put those concepts into words – any words – is phenomenal. So when the words come out of me there is no flexibility to soften the message. It would be a lie to say I have no control over my vocal tone, but it’s certainly not automatic – I have to concentrate on phrasing a line. When the message is that complex, my tone is all over the place. It’s rude; it’s arrogant; it’s aggressive; it’s any random word that triggers some past contextual experience in the mind of my conversation partner. No matter that in terms of intention, it means less than nothing. That tone is literally whatever default my vocal cords settle on when my whole attention is focused on the words. But what it says to my companion makes the conversation, for them, a genuinely unpleasant experience.

Reconciling my care for others’ feelings with the occasional genuine need for urgent communication is something I struggle with. Until very recently, I have always erred on the side of caution. Better to delay, and make sure the recipient is happy, than to force the message through and risk alienation. But sometimes the risk has to be taken. When the need is pressing; when, for whatever reason, my increasingly elaborate and creative attempts to use indirect methods are not getting through. When the message can’t be crafted fully in an email, but requires reciprocal interaction; discussion; negotiation. When lack of understanding on the part of that other person could have real, long term effects on my future and wellbeing.

I am learning to take the risk. It has been a painful start. I hope very much that things will get better from here.

I am sad, and that’s OK

A couple of months’ posts since I started this blog have already covered some ups and downs. I’ve written about autism and touched on the “side effects” – overload, anxiety and sometimes depression. I’ve written about moving forward; about seeking and finding solutions. In doing so, I’ve learned a bit more about articulating my needs and the things that work for me.

I like to think that one day, people might read this blog and learn. Maybe for some people, it might shed some light into the gaping holes of how autism is portrayed from the neurotypical perspective. Maybe one day it could even give words to people who need them, the way I looked for words in autistic blogs when I first realised who I was.

Words are hard. Using them to articulate my needs is even harder. I remember, almost two years ago now, when I first disclosed to a colleague how much I was struggling. I didn’t know I was autistic: my problem was depression, along with the overwhelming weight of just looking after myself that everyone else seemed to do so easily. I’d just started on antidepressants for SAD, and I felt like a complete failure. Knowing what happened to me every autumn and winter, after planning and researching and doing everything I could to attack the seasons unmedicated, I felt like I was done. I was convinced I would lose half of my life, every year, to this horror of exhaustion and hopelessness. I just didn’t know how to go on. And then I was dumbfounded when this person came back to me later and said: “I am here for you. What do you need? What can I do?”

I had no answer. I didn’t know what I needed. I’d never realised it was even OK to need anything. No one had ever asked me that before.

Since then, I have learned. Coming through that process of medication, CBT, lost inhibitions and the realisation of an overwhelming fear; drowning under the weight of my own true identity and the stigma and misinformation surrounding it; paper-thin coping mechanisms swept from shoddy foundations; my life and self stripped bare, naked and vulnerable. I survived. I learned.

I learned that the difference between “things I need” and “things that make my life easier” is subtle. I learned that there are things I need in order to achieve a certain level of functionality, but which I can survive in the short term without. I learned that the collective absence of many things that make my life easier translates into a need. I can do without some of these things, but I will need others to compensate. I read about spoon theory and spoon distributions and reticulating splines. I learned how to build my life around this unique distribution of needs, and how not to be ashamed of doing so. And in doing so, I stopped surviving and started to live.

But one thing I have not yet learned is how to articulate this to people who do not understand. Most of my followers here are somewhere on the spectrum, or have experience of mental health problems. You can relate, through your own experiences, to that frustration of not being able to control your own responses, or the massive impact of the tiny triggers that transform your life into a hell. Those accusations of over-reaction; that subtle minimisation and dismissal of your needs. You keep reading and you know this, and you understand.

The people I need to reach right now are the people who don’t understand. The people who don’t see that just because it’s not about fitting a wheelchair through a doorway, it’s still an access need. That complication of explaining that yes, each of these single things I can do or do without, with a disproportionate amount of effort – but if you make me face them all, every day, then it is literally impossible for me to get anything else done. Where my gestures of goodwill – “yes, OK, I can cope with this level of stress for a week or two” (cancels all non-essential activities and battens down the hatches) – are taken to mean that my access needs are not a priority. The people who don’t understand that I am used to abusing myself for others’ comfort, and that if I am not literally shaking with fear, I will probably be able to carry the lie that everything is totally fine. “I’m just tired.”

I am sad because I am trying so hard to make these people understand. I am sad because so far, despite months of patient effort, I have failed. And I am sad because of the increasing likelihood that this will damage my life and prospects for years to come.

I need not to wallow, while at the same time not beating myself up for feeling sad. It’s OK to feel sad when this sort of thing is happening. But I still have to get up tomorrow morning and smile as I negotiate. I have to stand up for myself, but oh so patiently. I have to pretend that my needs are not needs, are not urgent. I have to pretend that they are not hurting me. I have to engage on their terms.

This the social model of disability. This is society excluding, for no adequate reason, those whose needs they don’t understand. It’s OK to be sad.

Wasted words

In my last post I talked about some of the things I wished my neurotypical peers could understand and accept about me. The post was intentionally light-hearted, but it reflects an intense desire on my part: the wish that people around me could occasionally see past my “unusual” behaviours, listen to what I have to say, and maybe even catch a glimpse of the person I really am. From what I’ve read, this is a dream shared by many autistic people.

But communication goes both ways. I written before about things I do automatically that might seem rude or hurtful to a non-autistic person. These “odd” behaviours are documented throughout the autism literature, always as negatives or in mildly pitying terms. Officially, they’re encompassed in the triad of impairments – since the majority retains the right to define what is “normal” and what is an impediment. What seems to be less well understood, though, is how rude and hurtful some of the non-autistic social behaviours can be when seen from an autistic perspective.

A thousand examples spring to mind. Lying, for example. The amount of non-autistic communication that’s made up of lies and half-truths just staggers me. How is it not the most offensive thing in the world to be constantly lying to someone? And how are autistics not in constant demand as literally the most honest and trustworthy people in the world? But I’ll leave that for another day.

My current beef with neurotypical interaction is something they call “throw-away remarks”. These are words or phrases that people say which they claim, apparently with complete sincerity, don’t mean anything. Just words. And this I do not understand.

Perhaps it is part of my “deficiency” in small-talk – another form of indirect communication through words that mean little or nothing in themselves. But there is a subtle difference between small-talk and throw-away remarks. Small-talk, taken in context and together with other information, is the padding that supports neurotypical communication and relationships. Throw-away remarks on the other hand, as far as I am told, are only there to fill the silence. The difference in subject matter, I suppose, is just an unfortunate coincidence.

You see, I am not wasteful with words. So when I am described as rude or insensitive, it happens in very specific types of circumstance. Most often it’s in association with an idea I’ve analysed critically, which someone takes as an insult to their intelligence or authority. Sometimes it’s because I’m barrelling on with a monologue or directing the conversation, not recognising that another person is uncomfortable or trying to make a different point. Even asking a question too directly can cause some people to take offence. Making personal judgements, however, is not in my nature, and when I cause offence, it is never because I have made a personal remark that is derogatory towards another individual (joking aside – I can banter as well as the next man!). In what is claimed are “throw-away remarks”, this sort of personal judgement is commonplace.

From my perspective, the difficulty with these offhand phrases is that they do have meaning. It may not be conscious, but the words that people throw out in those careless moments reflect quite starkly their underlying biases and prejudices. In a world which it seems is almost constant in the practise of deceit, those little words are in themselves a window to the soul. And what an ugly thing it seems to be.

I encounter this behaviour with something between amusement and pain. Obviously when someone makes an offhand personal comment about me – particularly about any “work-related social skills” – it can be deeply upsetting. But honestly? I am perplexed. It is faintly ridiculous to me that, in a world that ties itself in such terrible knots about tone of voice and conversational balance, someone actually saying direct, meaningful words that are blatantly prejudiced and offensive can brush them off with an “oh, it was just a throw-away remark – it didn’t mean anything” – and that that’s totally OK! It’s accepted. Those are the social rules.

I just cannot get to grips with this concept. Why would you use those words if you didn’t mean them? Since the only person who gets hurt by my being offended is me, I do try not to take this behaviour personally. But still.

All words have impact. And there are times when I would dearly love to say to these people: if you can’t take responsibility for the consequences of your wasted words, then maybe you should learn to enjoy the silence.