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 🙂

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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.

Serenity

“God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.”
(Reinhold Niebuhr)

In the small bedroom I slept in when visiting my grandmother’s house, at the foot of the bed, was a wooden panel inscribed with these words. Simply carved, decorated only with the raised image of a pair of hands, clasped in prayer. The simultaneous simplicity and depth of those few, short words has never failed to astound me.

I’ve been thinking a lot lately about what it means to be autistic, and to be me. Which parts of me are immutable, and cannot change? Which parts of me are not? And even if I could change those parts of myself, would I want to?

There are things about me that make other people uncomfortable. The way I speak. The tone of my voice. The way I use my hands. These things are different, alien, and open to misinterpretation, but they are not in themselves harmful.

The language of autism is not something I would ever wish to change. It is beautiful, emotional and expressive. It does not tend naturally to hide or manipulate. Rather than change myself, where I can, I seek to ensure that those I interact with regularly have the correct understanding of these mannerisms. Then I can express myself safely, comfortably and freely in my own language.

There are other parts of myself that I would seek to change. The defensive barrier that rises in response to constant anxiety. The ever-deepening need to protect myself from criticism, moving gradually from legitimate dismissal of unreasoned negativity, to refusal to accept any form of feedback that challenges my fragile self-esteem. The relentless erosion of ability to take risks, learn or grow for fear of destroying the tiny, brittle, frightened thing that I have somehow become.

In changing this part of myself – this figment, whittled down by fear – I need a strength that it does not have. But it is not the only part of me. My autism is my strength. I need to stand up for myself, to challenge the inevitable pressure to conform to a pattern that is not me. My autism can do this, and will not be ashamed. The power to fix myself is already inside me.

Looking back at those words tells me I am not broken. I know myself as I am now: accepting the parts of me that are mine and beautiful, and looking to change what I can. Things will not always be this way – couched in this quiet place where everything is clear. But for today, I am serene. I am courageous. And perhaps, if only in this, I am wise.

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.

Breathe

Time is contracting around me at the moment. To say I don’t know what prompted this would be a lie, but the suddenness and sheer intensity of the reaction never fail to catch me off guard. One moment I’m fine. The next I stall just trying to say the words: “I need to go home”.

Overload, stubbornly unremitting, has been the theme for this week. It started with a weekend all to myself, full of enthusiasm for clearing the inevitable backlog of mundane, everyday tasks. A whirlwind of activity, I almost succeeded. Then two nights I came home from work and I couldn’t stop. Sitting down quietly and clearing my head in time to sleep – just didn’t happen. So the next two days, in an office full of people? Crash and burn.

Experience tells me I need to try harder to slow down. A combination of really wanting to exploit the productivity (“aw, but I’m getting stuff done!”), along with something that lies partway between false confidence and wishful thinking (“I’ve learned to deal with this – it’ll be fine”), lead me time and again not to do what I know I need. It’s not easy to make that conscious decision to stop – stop making progress with this time and start to relax, right now. Because if you don’t, there will be no time tomorrow.

“No time” in this context seems like a strange way of putting it, particularly in a society where time is so fixedly absolute. Conventional wisdom – indeed, all reasonable logic – says that the more time I spend doing useful things tonight, the more time I will have tomorrow to spend as I please. But that is only true up to a certain point. Past that point, the more time I use today, the less is left over for tomorrow.

Like money, time in itself isn’t really important. What’s important is what it buys. Poverty and wealth aren’t defined by a simple threshold in annual income – however hard the media may try! The value of money is measured in the food it buys, the heating it pays for, and – when we are lucky – the opportunities it affords. In a suburb 50 miles from London, a 3 bedroom house can be bought for what it costs to rent a bedsit in the city. Money is relative. So is time.

My time isn’t measured in hours, minutes and seconds. It’s measured in fresh dinners cooked and casseroles bulk-frozen. It’s measured in shirts ironed. It’s measured in miles walked, cycled or driven to get to where I need to be. The units of time are activity. So for me, having “no time” literally means not being able to complete, between fixed commitments, the necessary activities to remain healthy and functional.

When I walk home overloaded, if I look up from the pavement, I will be lost. I know the route by heart, and must walk it as if in my sleep, because the conscious me does not know where I am. My mind overflows, making nonsense of the signs and signals around me. Just crossing the road is a dangerous adventure, and unreal – I could walk straight out into traffic that I hadn’t even seen. Bizarrely, these times when I run such concrete risks to my own physical safety are one of the very few times I do not feel fear. With such incredible volumes spilling over in my head, there is no abstract or spontaneous feeling. I feel everything that is real, from the visual and auditory and other sensory stimuli that I cannot at that moment process; and yet emotionally, I feel nothing.

When every step seems an age, and a half hour journey lasts a lifetime, the concept of time as an objective construct appears as it truly is: meaningless. When finally I arrive home, nothing will be done that night. In assembling dinner, I will sacrifice the next night – if I didn’t eat I might lose several more. On the third night, I will wake dimly from the haze with three nights worth of things to do. I will do two, in a panic, and cancel my weekend plans. Because although there was the same amount of time that week there always is, there wasn’t time.

Weeks are lost to these monstrous fluctuations, this constant uncertainty. Planning becomes impossible. Life becomes small, strung out and struggling. Isolation and focus become the only way to survive.

Of course, the flexibility of time has a flip side. The weekend hours are longer than those on weekday evenings. Freed of commitments, weekends can loosen the hours that have mercilessly constricted around my working days. Relaxing the schedule to drift between tasks, with no one to answer to, I can be safely and happily disoriented to focus on the important things at hand.

For now, another weekend has come. Precious time to spend reinflating the hours, so that next week, I can breathe.

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.

Gender unawareness: the benefits of social isolation

Growing up autistic, I was less receptive than most to the subtle underlying pressure society exerts to separate men from women. At primary school, I was bullied horribly by girls and boys alike. But from the age of 11, I attended an all-girls secondary school that prided itself on teaching its students to be leaders. Rarely socialising with my peers, I was never exposed to the social requirement to hide my competence and enthusiasm in the presence of men. Looking back, my loneliness seems a small price to pay for the privilege of a sexism-free adolescence. Of course, I knew that there was something “wrong” that made me less than my peers. But it had nothing to do with my gender.

The lessons I learned in childhood and adolescence bear a stark contrast to the lessons impressed on most girls in their teenage years. In a girls’ school and later at university, I found delight in exploring concepts, helped on as we were encouraged to discuss and develop. Never mind if our answers were wrong or incomplete; I was consistently met with a willingness to explain, to lead me into a deeper understanding.

But in a gendered environment, girls learn that they are expected to be wrong. They learn that unless they have a perfect answer, they should keep quiet or risk ridicule. “Girls talk too much”: so goes the stereotype, implying that women should be careful before speaking to ensure that what they have to say is truly valuable. By the mid-teenage years, some girls would rather present their teacher with a blank page than submit their work so far and ask for guidance. The lessons learned here persist long into adulthood, with women (in my experience) being much more defensive about mistakes and less willing to discuss what went wrong – with a view to what could be improved – than men.

I remember a time when I didn’t “see” gender. Although I grew up surrounded by women and girls, I’ve never been uncomfortable in a working or social environment dominated by men. It served me well in my university studies, and I had no qualms about gender balance in applying for jobs in scientific fields. In the workplace, that’s changed. But not in the way you might expect.

The thing is, from an autistic perspective, I’m now generally more afraid of women than men. In the neurotypical world, behaviours that come naturally to me are often misinterpreted. Both men and women have cautioned me against arrogance, where I suspect they might have recognised (and approved of) confidence in a man. But in face-to-face interactions, I feel like I can trust a man to speak out openly if he thinks I’ve been rude. An open challenge I can face down, or accept and apologise as necessary. Whilst a woman, conditioned to avoid conflict, will keep her feelings quiet and unresolved – and I will never know. This is an observable impact of men learning that their identity and personhood has a value worth defending; whereas women have been socialised to submit, never challenging anything that makes them uncomfortable. The upshot of which is that with a woman I’ve offended unintentionally, I may never get the chance to make it right. With a single mis-step on my part, the relationship is poisoned.

The fact that I’ve learned to “see” gender in the working environment because of these socialised differences does bother me. I try very hard to treat people equally, and I always presume competence regardless of gender. I know that it’s equally possible to have informative, rewarding technical conversations with women as with men. But I’ve found that from an autistic perspective, conversations with women tend to be much less accessible to me, and much higher risk. There is so much more padding and subtext. Getting to the point with someone who’s been taught it’s rude to be direct is hard.

So I find myself fearing a female supervisor. Not because I have a problem with women in authority, or with women in general, but because experience tells me we’ll struggle to maintain an honest dialogue. I fear she will misjudge me, and not speak out. I fear I won’t be able to find her message, hidden in amongst the soft edges. I fear that when I make the inevitable mistakes, I’ll never have the chance to make it right.

(Throughout my life, largely because of my undiagnosed autism, I have learned that my own feelings are subordinate to those of others, and that I should not assert myself or challenge those things which are wrong or uncomfortable. The same lessons learned by every schoolgirl, but on different subjects, and for different reasons. The irony – that I must be afraid of women who have learned not to defend their own interests and expect me to be equally submissive – does not escape me.)

Of course, this fear of perpetual misunderstanding applies to some men, too. But in my experience, there are fewer men who will not speak out in the face of a perceived wrong. And perhaps this is because of how we are taught to relate.

The language of interectionality and feminism is new to me, but the concepts make a lot of sense. It’s interesting to think about the interplay between autism and gender in UK society. I don’t pretend to offer deep or particularly original insights here, but I think I might post around this topic every so often, when I want to explore something new. (New special interest, moi?!) In the meantime, if anyone more experienced wants to recommend me some reading on this I’d be keen to learn more.

Existential change and the importance of routines

For autistic people, change is hard. Sometimes good, but always, desperately hard. I’ve written about this before, in terms of how I manage the short term effects. But I wanted to devote some time here to exploring how change actually feels from my autistic perspective.

To understand the impacts of change, you need to appreciate the importance of routine. Routine is a huge part of my existence. All of my “adult functionality” – shopping, cooking, cleaning, paying the bills – is built upon a broad supporting framework of repetitive tasks. My routines are the rocks and scaffolding of my life: stable; affirming; immutable. They’re intrinsically entangled with my sense of external reality. Routines are the tethers that anchor me to the outside world.

Most days when I get out of bed, I follow the same routine. There is always breakfast, with delicious milky coffee. There is always a shower. On weekdays I switch on the radio and listen to the news while I get ready for work.

The job I do has very little formal structure, so I’ve had the space to develop my own routines, which fit me as comfortably as a favourite pair of jeans. I walk to the office by the same route each day, and go up the same stairs to the same desk, which is laid out clearly with everything where I expect it to be. At lunch time I go for a run or gym class, and afterwards eat my sandwiches quietly at my desk while dealing with emails. My evening routine can be different each night, but always involves dinner, planned carefully in advance to be preparable within the time available. It’s hard to make those decisions after a day in the office.

On weekends I try to relax and let things go. I don’t always decide in advance where I’ll be for lunch or what I’ll have for dinner. But I always have breakfast. And there is always some sort of plan.

The days when I don’t plan are empty days. Sometimes I read; more often I write. I lose all sense of time. I eat when I’m hungry and sleep when I’m tired. There is no news, no voices on the radio or phone – rarely does anyone share my empty days. These are the beautiful, lost eternities that I spend in the labyrinth of my own mind. The empty days are the reason I know that routines are just my way of navigating a strange, Escher-like world.

When routines are the tools you use to give shape to the confusion and chaos of life, then change can be dangerous. Not all change, oddly enough; but predominantly the changes that interfere with established routines that keep me grounded and functioning. If I know about a change in advance, I can identify the ways it might disrupt my routines and carefully work through how they need to adapt. Sometimes, though, that doesn’t happen.

The extent of the distress caused by unplanned disruption can be difficult to believe unless you’ve experienced it yourself. I’d like to illustrate with an example. My workplace has made a lot of changes recently, which included within the many details a modification to office protocol advising people not to eat lunch at their desks. This is something I do frequently, since I’ve often been for a run, and I can use the eating time to get focused on what’s coming up that afternoon. And having food on schedule is a big deal for me. But amongst all the other changes I’d meticulously prepared for, even I had completely overlooked this as trivial. So the moment I realised this was an issue was when I sat down at my desk after a run one day. Run ragged and disoriented by the disruption going on around me, it dawned on me that I was hungry and hadn’t eaten. But I wasn’t supposed to eat at my desk. This was email time and food time, but they couldn’t happen at the same time any more. And there were other constraints on my time. Time. Food. Emails. My brain just stalled.

And I actually considered not eating the food. Because that was easier than breaking the physical routine of being at my desk at the right time, checking my emails and trying to herd my scattered thoughts into the space of an afternoon.

(I have some sense. I know how strongly not eating correlates with meltdowns. I ate the food.)

One example, but illustrative. A small change in the wrong place, unexpectedly disrupting a routine, makes everything harder. When the disrupted routine is one involving a basic need – food, rest or sleep – then that basic need is likely to be neglected. In the presence of any external pressures, in a life already warped to fit an alien world, the rapid spiral downward can be hard to control.

I am not averse to change. In fact, I strongly believe that change is necessary. Not for its own sake, but as a part of learning and growing and living life to the full. Whatever I believe, though, it doesn’t make the process any less painful.