I’ve been slowing realising over the past two weeks that some of the current mental fun times are related to the ongoing process of coming to terms with being autistic. The first clue was becoming curious about re-reading my assessment report, and then being rather shocked to recognise that I didn’t actually read it properly when I received it, eighteen months ago. I skim-read, noted the one entertaining mistake (“Katie and wife were given 40kg of Lego as a wedding present”…I do not own enough Lego for a half decent squats routine, we bought 4kg from eBay to put on the tables during dinner, for friends equally as socially averse as I am to distract themselves with), and threw it in my box of important paperwork. But more on that another day.
The second thing I’ve noticed recently is a whole host of thoughts along the lines of not really being human. I’ve caught myself feeling like a relatively convincing robot; clever enough to hide that I have no instinct about how to interact with other people 95% of the time, but not a real person. This is plainly internalised ableism – at work, I have a huge amount of genuine compassion and respect for my clients, and I think their sense of this goes a long way towards compensating for those moments when I finally finish processing what they just said half way through replying to what my autopilot thought they were likely to have said, and have to somehow change my sentence to mean the complete opposite. In my personal relationships, although I am a total git for not replying to messages for weeks on end, I am fiercely loyal, caring, and anxious to help in any way I can. I have social instincts, and on the whole they are good ones. It’s my communication of them, and others’ interpretation of that communication, which bugger things up.
I can know this logically, and yet still feel like an interloper, clinging to their secret identity by their fingertips. I didn’t realise how many myths and stereotypes about autism I’d indirectly absorbed until I was diagnosed. Autistic people are empty shells; unempathic; uncaring; broken; there’s a real person trapped in there waiting to be found. Coming across these sorts of ideas now reminds me of being made to feel less than human while I was growing up.
As a baby academic, the concept of empathy irritates me. It is vast and vague: some researchers, theories, and definitions might more accurately be said to be describing compassion; some, the ability to share an emotional state; still others, perspective taking. What does it mean to put yourself in another person’s shoes? Do you just have to understand their feelings logically, or do you also have to care? If both of these are true of yourself, and yet you are still perceived as having unusual reactions to the emotions or distress or other people, or to situations which upset others around you, what else might be going on?
I have always cared.
I am two years old and my mum finds me hiding behind the sofa, crying and repeating “ouch, ouch”. She checks me over and I seem physically okay; after some confusion it is determined that I was upset by a scene in Postman Pat, in which the Reverend Timms bumps his head. She sits me on her lap and rewinds the video to show me that he is fine afterwards, aside from a few seconds of embarrassed annoyance.
I am four, and I am again found in the living room in a state of distress. This time Newround is on, and they are showing the terrible effects of the famine in Ethiopia. I point at the TV and say “That’s real, isn’t it?”. I can’t be consoled, and spend dinnertime wondering if my food could be posted for another little girl to eat.
As a child, I cared deeply when I saw another person in pain. Even if it wasn’t a situation I had experienced before, I understood that it was hurting the people I was watching, and their pain resonated in me. In some ways, those two examples of my behaviour might surprise some of the academic experts who suggest that empathy is at the very least later to develop in autistic children. But in other ways, this is a fairly typical example of autistic behaviour: when distressed, I didn’t seek comfort, even though there was a nice person in the next room who had shown during previous upsets that she cared and would help me calm down. This literally didn’t occur to me – it was like people vanished from my mind if they weren’t in front of me at that moment. In front of me were the people on the TV who were upset.
These episodes also stood in contrast to my behaviour around other children at playgroup: I didn’t know what to do with them. I watched them playing together, and wondered if that might be nice, but it seemed impossible. Where would you start? They were so chaotic and confusing, it was much easier to hide in the book corner or try to barricade myself in the Wendy house. At playgroup, I lacked the instinctive understanding of other children’s emotions and motivations necessary to join in, whereas a televised depiction of starvation and poverty was easy to connect to. How were they different? I suppose that one was in the format of a narrative, with a logical flow, and it was the sole thing commanding my attention; the other was a tumultuous mess of sensory input that I could not begin to process. I never lacked empathy, but I first had to be able to process the situation, and to do that I needed quiet and clarity.
I am eight, and a letter addressed to me has arrived in the post. I’m so excited – I have never had a letter just for me. I open and read it with increasing confusion. Something terrible will happen if I don’t copy it out and post it to six other people. It feels like a nest of angry wasps has started buzzing in my head, and I can’t think, so I go upstairs to my room. I lift up my t-shirt and start counting the healing chicken pox on my stomach and back. My mum finds me like this twenty minutes later.
In addition to feeling like an alien around other kids my age, there were many times when I was growing up that my behaviour was interpreted in complete contrast to my feelings or intentions, which made me feel very alone and confused. A common situation was being told I was acting unemotional when I was actually experiencing very strong emotions. The chain letter was a classic example. My internal sense of my emotional response to it was overwhelming and unfathomable, but I gave no outward display of this at all. My automatic reaction was to remove myself from the breakfast table, where I was surrounded by the rest of my family, and seek comfort in numbers and repetition. Luckily, after some confusion, my mum correctly identified that I was coming across as particularly robotic BECAUSE I was upset. But I wasn’t always so fortunate.
At nine, our family dog dies. This is my first encounter with death, and I seem to have short-circuited. I sit and stare into space, unable to focus on anything but the thundering, incoherent roar inside my head. Several hours pass before mum, concerned that ‘this isn’t normal’ in comparison to my visibly distraught siblings, takes my hand and leads me outside to where Lisa’s body is waiting to be buried. As I stroke her soft fur, and feel how cold she is underneath, I finally start to cry.
This method of helping me process my emotions is not possible when first my aunt, and then a good friend, both die when I am fourteen. At both funerals I sit silently, passing tissues to others, wondering why I can’t cry. I don’t think it’s because I am okay with either of these people being dead – I feel terrible, like my internal organs have been ripped out and replaced with a black hole, sucking at my skin from the inside. But the noise in my head is deafening, and I can’t concentrate on anything else. At both funerals, someone – two different someones – notices my dry eyes and snarls ‘monster’ to my face. I am certain they must be right. I am not acting like a real person does when someone dies. Maybe I am evil and just don’t know it yet, maybe I will grow up to be a serial killer. Who knows what someone who doesn’t get upset when people die is capable of? I’m frightened.
It’s not uncommon to feel numb when something tragic happens – this isn’t exclusive to autistic people. But for me, this was a consistent response to every upset, and it could be prolonged almost indefinitely if anxiety around my apparent lack of reaction was fueled by others’ comments. As an adult, I have learned that I process difficult events best by talking about them – typical displays of emotion like crying may or may not happen while I’m doing that, but they are not always essential to whether I end up feeling like there is any kind of closure to the event.
So, there are all sorts of reasons that I have been mistaken – and have mistaken myself – for lacking emotions, empathy, or even basic humanity. I react to emotionally intense situations differently to most other people, usually becoming so overwhelmed by the cognitive and sensory demands of the experience that I start shutting down and staring into space. This is partly because I experience strong emotions as a form of sensory overload: the violent, complex signals from multiple parts of my body are too much, and for a while I can’t make any sense of them. It takes a lot of effort and energy to explain what is going on to other people when I’m overwhelmed like this, so if I do try to talk to someone, I’m forced to focus on being coherent, which means I don’t have the capacity to also be emotionally expressive. I need time to myself in a quiet setting to process shocks.
Logically, I understand this now – but we all know that gaps between logic and emotions can be difficult to bridge. The frustrating thing is, I don’t think this is an integral part of being autistic, despite the persistence of some stereotypes. Even though a lot of us report feeling rather otherworldly at times, if I’d had the context, growing up, for why I was the way I was, at least I would have had the correct words for my feelings and behaviour. Instead, I collected and analysed the words of others, and beat myself with them mercilessly. I try to overwrite them now with more accurate ones: autistic, different rather than less. But sometimes it feels like I’m still the teenage monster, convinced she’s less than human, and trying so desperately to hide her real self away.