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.

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.