Scenes from childhood

Like many on the spectrum, I was not a happy child. Having supportive and loving parents, I was luckier than some. And I have seen some photos of me, as a very young child, smiling. But my abiding memory of the camera was always the gentle encouragement to stop frowning, to look happy. I was rarely happy.

My primary school years were a particular trial for me. Infant school is peppered with memories of solitary play, of watching from the corner of the playground or imagining wild jungle scenarios in my own little world. Quiet, strange, a little lonely, but mostly harmless. But in junior school, surrounded by peers becoming more and more aware of the social world, my strangeness could no longer pass unnoticed. Articulate on paper but slower in words, I was bullied mercilessly: first by older children, and then by my peers. The saying, oft quoted by my parents, that “words can never hurt me” provided no comfort. Sticks and stones I could have dealt with – those I could learn to fight – but somehow I could never get to grips with words. I remember my mother hugging me, telling me I had to try to be less sensitive: don’t let them see they’re hurting you and they’ll go away. I couldn’t hide it.

I was around 10 when I realised I could hit people to get them to stop. I learned it by accident one day: overwhelmed with the rage and shame of constant public humiliation, I just lashed out. This, I later found, was particularly effective against girls. Since I’d had a growth spurt by this point and was one of the tallest in my class, the verbal bullying I’d been defending myself against carried little weight with teachers faced with a cute little sobbing blonde pleading I’d hit her. But it was the only way to make them stop.

I don’t like to think about where this path would have taken me. Thankfully, my secondary school was focused on academic achievement and had an excellent anti-bullying culture. Having flared up a couple of times, and been met by peer behaviour of surprising emotional intelligence, the brutal lessons of junior school were quickly scrubbed out. But it’s sobering to realise the full impacts of being in an unsafe environment. However strong you are, eventually all you are left with is how to survive.

The lessons of childhood have a strange habit of popping up again in adult life. It’s easy to get cocky, thinking you’ve outgrown the vulnerability that pushed you to anger and violence. I thought that chapter of my life was over. I was wrong.

These past few months, I’ve been in a terrible place. From what is now a safer space, with hindsight, I can’t describe it as workplace bullying. But even though there was no conscious intent, the actions of this person and their treatment of me had pushed me into a place of desperate terror. Held ransom to social and communication abilities I did not have, there was nothing I could do to take control of my situation. Whatever I did, I couldn’t win.

As the months dragged on I grew to hate what I’d been turning into. I’d regressed into that space of desperation: of lashing out at the tiniest thing, seeing every challenge as a threat. On the surface I kept fighting patiently for support, trying not to scream the urgency while my self-care and home management abilities crumbled. But the constant performance took its toll. Work became the subject of my nightmares. With the threat of retaliation for autistic behaviours always poised over my head, fuelling the very distress that makes those attributes more difficult to mask, my position was precariously unstable. I felt – I was – unsafe. And all of the unhealthy attitudes and mechanisms I’d used as a child came back in full force. The positive lessons of my adolescence protected me in part: I didn’t hit, I didn’t shout. But I couldn’t sit still. I paced in meetings. I couldn’t make eye contact when the bully was in the room. I physically shook with adrenaline, with the effort of suppressing my anger and fear.

It’s been a few weeks now since the situation was diffused. This person and I no longer work closely together, and my line manager has been wonderful in helping me get back into a healthy routine. I’m no longer pacing and shaking in meetings. Things are settling down.

I’d like to say I’ve learned since I was 11 years old. And I have: I’ve learned many things. I’ve learned the importance of trusting my own lived experiences over the voices of authority. I’ve learned that nothing can be taken for granted. I’ve learned that patience through pain is the only way to get what you need. And the most powerful positive lesson of all: I’ve now learned that eventually, patience can work. Experiencing the outcome of patience and perseverence can only feed my confidence in pushing for future outcomes.

But I haven’t learned how not to be a monster in between.

Compassion, I think, is the main thing to take away from all of this. A deep understanding that behaviour and attitudes, of myself and of others, are often much less about the person and more about the environment they’re living in. A hostile environment makes monsters of us all.

Hate

I get most of my news off the radio. So it was on Sunday morning, over breakfast, that I heard about the mass shooting at an LBGT nightclub in Orlando, Florida, USA.

The obvious explanation that sprung immediately to mind was that this was a hate crime. A horrible attack on gay people, in a deeply Christian culture that quietly tolerates the intolerance of any relationship not strictly classed as heterosexual. A clear, stomach-churning example of the way that quietly letting everyday injustices pass can nurture the attitudes that eventually lead to such brutal, horrific acts of violence.

The reporting journalist, however, had other ideas. I was shocked a second time by the rushed inevitability of her quick and eager report: that no, there was as yet no conclusive evidence on whether or not this was an act of Islamic terrorism.

No acknowledgement of any alternative motivation. No mention, beyond the nightclub’s identity, of the LGBT connection, or even the possibility of a hate crime. Muslims are so inherently violent, it seems, Islamic terrorism so rife, as to be simply assumed. The first person I heard to intimate that homophobia might have motivated the attack, later on in the afternoon news, was the gunman’s father. The media, however, denied the issue, or were silent.

How elegantly the marginalisation of two separately stigmatised groups is reinforced. How subtly the discrimination that LBGT people experience throughout the Western world is trivialised. How neatly the blame is shifted onto another culture, another religion, another type of person. Someone else. Not like us. That could never happen here.

Except that it does happen here. It happens every day. I remember the case fought and won by a gay couple who were refused entry by the Christian owners of a B&B. Yet even winning that case couldn’t suppress media coverage disgustingly sympathetic to the guilty, and has not stopped other bigots considering it acceptable to repeat the offence. Closer to home, I’ve seen my own gay friends being subject to derogatory street abuse by an elderly white man, in all other respects the picture of stately gentility, making his steady way towards the corner shop. These aren’t the isolated acts of terrorist radicals. These are the everyday aggressions perpetuated by “respectable people”. The people we worship with in church. Our neighbours. The people who live next door.

I’m not for a moment implying that the majority of people would take an assault rifle into a nightclub and gun down over a hundred people. It doesn’t matter. The majority of LBGT people didn’t die in that assault. That doesn’t make this any less the expression of a hatred many in our society still choose to accept. That doesn’t take away the fact that somebody singled out those hundred people, of whom at least fifty have died, specifically because they were part of the LBGT community. That doesn’t make this any less their pain.

Why is it so hard to acknowledge others’ pain? Why do we struggle so much, collectively, to empathise with perspectives different from our own? Is it because we feel ashamed? Is it because we know, deep down, that we are a part of the society that collectively accepts the discrimination and tacit oppression of anyone different from ourselves? Does it feel safer to express outrage at anti-gay laws in Uganda, the very strength of our indignation protesting the alienness of it all – as if somehow this abuse were confined to strange foreign lands, separated from us by thousands of miles, instead of happening right outside our doors?

We need to be able to accept the pain of others. We need to acknowlege their suffering. We need to validate their fear. Even if there is nothing more we can do, no support we can offer, we cannot but take that first step, and stand beside them.

Updated: because this atrocity isn’t mine to own. These are the posts you should really be reading:

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.