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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.
It would be easy for this blog to get a little groundhog day now I don’t update as often. I usually come back when I need to talk, or to work something out – and those things don’t tend to be super happy, positive aspects of my life. This is fine – I’m not a great fan of the idea that positive thinking solves all things, both because it’s quite frankly bullshit, and because I’m suspicious that it’s mostly a convenient way to silence people with mental health problems and other oppressed groups. So I’ll keep ranting; however, even when I feel like crap, not everything in my life reflects that. In honour of this, here are some recent things that were decidedly uncrap.
I have been married to A for 3 years now, and we’ve been together for 6. This is by far my longest relationship, and I’m still totally besotted with her. For our third anniversary, we stayed in a youth hostel in Northumberland, where I took a billionty photos of Bamburgh Castle…
…and walked to the Scottish border, because these things must be done.
It wasn’t exactly Trump’s wall. The Scots have much more sense than that.
My business is doing really well. I finally made the equivalent of full time minimum wage over the last tax year, which felt like quite an achievement for someone who has never been able to work full time. I’ve also never managed to cope with being employed by a company for any length of time, whereas I’m now half way through my fourth year of self employment. It really helps to be in charge of my own schedule.
I graduated from my Master of Research in December, having managed to complete two consecutive full time postgraduate degrees alongside my business. They were both really challenging, both academically and practically, but I’m now set up with all the qualifications and skills for what I want to do next. Which is…
…a PhD, starting (fingers crossed) this September! An academic who was in the top 3 of my geek-heroes list has agreed to supervise me, I’ve submitted all the paperwork, and now am just waiting for it to all be official so I can actually talk about it without feeling like I’m jinxing it.
At Christmas I got a new camera, which I was very excited about. My wife has finally got me interested in birds – she’s been trying to make this happen for years, since my most typically autistic ‘special interest’ is butterflies, which are very seasonal, leaving me without an obsession I can actually interact with during the winter. So we’ve been on several trips to the coast to find interesting birds, like these LAPWINGS OMG (my brain keeps insisting on calling them waxwings, which they are not. Waxwings are something else entirely. Getting two nouns consistently mixed up is a common problem for me – but at least this one is inconsequential, whereas things are trickier with that one client I keep accidentally referring to as Elaine).
Also here is a very nice robin, just because.
Both taken with a telephoto lens, the proper focusing of which has required a lot of practice, with much swearing.
I am sure I will return with more depression and pretty photos soon!
Over the last few years, my ongoing goal has been to try to figure out what a sustainable, meaningful life would look like for me, and how and where I might fit in the world. When I say “fit in the world”, what I mean is more along the lines of finding the places and roles which are right for me, rather than changing myself to fit whichever place and role I’m in at the time. Learning about autism has helped with this immensely, as has spending three years working on various projects at my current uni, as the department I’m part of is pretty inclusive and accommodating.
So, what have I come up with? Currently, my only concrete answer is that there are no concrete answers. I’m constantly thinking, trying new ideas out, gathering data (literally – I have a tracker app to record my mood, anxiety levels, urges to self harm, energy levels, and so on, and it produces some lovely statistics), and refining. I’ve altered my schedule several times. My two very full days with early starts are Mondays and Wednesdays; I work from home on Tuesdays and Fridays to break up runs of days otherwise spent endlessly interacting with other people; and I only work evenings twice per week. This is a big difference to the early days of my self employment, when I had no real choice but to work to clients’ availability if I wanted my business to survive. I still feel a little guilty that I can’t accommodate the peculiarities of every potential client’s schedule, but equally, I wouldn’t be able to help any of them if I ended up too exhausted to work. Playing with my working patterns has helped me to realise that my current job is manageable, and even enjoyable, when I am not on the verge of burn out. Being autistic brings benefits and challenges to what I do, just as it does to every other area of my life – but that’s probably true of anyone’s neurotype/personality traits. So counselling currently remains in my long term plans, although I suspect I will try to move more towards training and consultancy than one-to-one work in the very long term.
On top of work are things I do out of choice. I am trying to upgrade my driving license to include manual cars, so I have driving lessons most Tuesdays, which I hate, but which will have useful long term benefits. I have started lifting some fairly-heavy-for-a-small-person weights once a week, because it’s fun and good for my bone density. I would go twice a week if I could, but I can’t, so I don’t. I’m leading a voluntary project with my Masters research supervisor, but I’m delegating most of the face-to-face work, like participant recruitment, to other volunteers. I’ve been applying for PhDs, and am 95% certain I will be starting one of them in September, if all the paperwork goes through okay. The problem is that any particular configuration of work and quality of life tasks might work beautifully one week, then be way too much the next. Usually it’s these optional tasks which tip me over the edge – but on the other hand, while they are not financially necessary, they are all important to my long term career, health, and general enjoyment of life. So when my mental health red flags start appearing, I often feel like I have to choose between scaling back on paid work, which I can’t really afford to do, or going back to basics and only doing paid work, which is a little soul destroying. Most weeks I strike a tentative balance between the two.
And then sometimes it all goes wrong, like it has done over the past two weeks while I’ve been ill. It was only a virus, and I escaped taking too much time off because the day I was most unwell was the day of All The Snow, so no one else could get into town either, clients included. That was a Wednesday, and I thought by the time things got back to normal on the Monday I would have had the weekend to recover. But no – I started Monday with the panicky inner monologue of “I can’t, I can’t, I can’t”, and it’s not calmed back down again yet, eleven days later. This has really messed up my lovely tracker graphs, because everything had been going in the right direction since about November, when I started my new medication, and now they’re all heading downhill again, damn it. I am not impressed.
The medication thing is complicated too. After I was diagnosed with endometriosis I started taking a small dose of amitriptyline for chronic pain caused by scar tissue on nerves, and it coincidentally helped a number of other things: my sensory sensitivities became manageable, I became less anxious and meltdown-prone, my IBS almost disappeared, and I started sleeping well. But amitriptyline is renown for causing brain fog, and on top of my general executive dysfunction this created some serious problems. So I took a previous psychiatrist’s recommendation up (they do occasionally have useful ideas 😉 ) and started taking reboxetine, an antidepressant which only seems to work for a weird minority as it acts on noradrenaline rather than serotonin. As anything serotonin-y seems to make me worse, this turned out to be a good call: reboxetine improved my mood, which was rubbish at the time, and my concentration, as it is also used for ADHD. But as it turns out, these two meds don’t get on with each other, and I got cardiac side effects, so I reduced my amitriptyline. Now, my concentration is much better, and I’m still sleeping okay, but my sensory sensitivities are out of control, I’m much more anxious, I’m having more meltdowns and my digestive system has returned to its previous disreputable state. This was a worthwhile trade-off to begin with, because my mood was better, but now my mood has crashed again as well – delicate flower I am, I am still only taking half the normal starting dose of reboxetine, which is clearly not enough to contend with the general state of me right now. I don’t want to take strings of medications, each designed the counteract the side effects of the other, I just want my brain, my heart, my digestive system, and my nervous system to all get along with each other. Is that really too much to ask?
Really, this continual process of trial and error, burn out and rebuild, has been going on since I was about 14, which is the first time I can remember deliberately trying to figure myself out in order to make life easier. Why did I always feel so bad? Why did I keep trying to restrict what I ate? What the hell was the self harm about? My first ever answer to those questions was that maybe “bad foods” like chocolate made me eat too much, which made me hate myself and want to restrict/self harm, and so the answer must be to not eat chocolate. As well as being a very eating disordered interpretation of events, this seems endearingly naive – but I was doing the best I could with the resources I had at the time, which consisted solely of my brain, because I didn’t have any help. I can forgive a scared 14 year old for that. Almost 20 years later, many things have changed, both internally and externally. I have had multiple therapists offer their interpretations and suggestions, I have accumulated a vast amount of knowledge about mental health, I know I’m autistic and understand what that means for me, and I am surrounded by people who ‘get it’ and support me. But sometimes, I still feel very alone.
I wish there were services designed to support the mental health and quality of life of autistic people in the UK – where I could see a doctor who knew which medications would help my sensory issues without making my heart act like it belonged to a hummingbird, have someone like an occupational therapist work with me on trying to optimise my schedule and responsibilities, get earlier warnings from support workers who knew me and could pick up on mood-related red flags before I’d noticed. But I don’t think those services exist for people who have straightforward mental health problems (if such things even exist), let alone anyone with an ounce of complexity. Maybe it comes down to this: I wish there was a safety net. Sometimes I feel like I’ve climbed far too high, and am hanging by my fingertips hyperventilating in terror. Sometimes I only look down to marvel at the view and the distance travelled. And it’s so hard to predict which of these will be my experience on any given day.
Just to note, I have a new twitter account – I’m @common_lime now. I deactivated and had my old account wiped, so if I appear in your follower requests, it’s not because I stopped following you specifically 😉
I first began to suspect I was autistic while reading about autism in women for my MSc thesis research. I recognised myself in the obsessiveness, the repeated attempts to function like a ‘normal’ person followed by catastrophic burn out, and the wayward processing of sensory stimuli, one minute over-sensitive to the point of panic, and the next under-responsive, resulting in all sorts of confusion over the source of mysterious feelings of discomfort, only to realise that I was sitting on my foot or hadn’t had a drink for hours. But, I thought, I couldn’t actually be autistic, because I didn’t have problems communicating. I was shy and introverted, but I worked as a counsellor, I achieved excellent marks for written and oral assignments at university, I’d been a prolific blogger and user of internet fora, I was capable of forming long term friendships and relationships, and had been married for a year. Surely all those things suggested I could communicate effectively?
Two years later, I know many other autistic people, mostly women. Just off the top of my head, they include other counsellors, a translator, several academics, a copywriter, and a journalist. It’s almost as if – surprise! – we have a profound desire to collect information about and understand other people, the situations they create, and the language they use to achieve this. Maybe because the primary strategy we unknowingly developed for dealing with the chaos and unpredictability of others’ behaviour was to study it.
Taking the diagnostic criteria too literally does seem to be a common, if rather ironic, barrier to recognising autism in oneself. With more reading, more time for the ideas to percolate, and more exposure to the accounts of other autistic people, I started noticing more of my own difficulties around and differences in communication. Such as: the eternal puzzle of how I could be compulsively honest one minute, unable to keep secrets or tell a white lie no matter how much I wanted to; followed by hearing myself saying things that blatantly weren’t true the next. Usually about really minor, ridiculous things, for which honesty would have no cost. It took me a while to realise that I wasn’t lying as such, because I had no intention to be dishonest – I was confabulating. Anyone who has worked with people with dementia will have come across this phenomenon, in which people automatically, and seemingly unconsciously, attempt to cover up gaps in their memory that affect conversation with likely sounding material, almost like their brains are trying to keep the knowledge that anything is amiss from entering their consciousness. In my case, this seems to be a strategy I’ve unwittingly developed to deal with taking longer than most people to process the meaning of spoken words. Ever since I was a child, I’ve been shouted at for ‘not listening’, ‘not paying attention’, and ‘not caring’ when I failed to respond in the way the adult speaking to me expected. Consequently, I now have this incredibly frustrating autopilot that somehow registers speech, realises a response is required, and comes up with one with a high likelihood of being appropriate before I have consciously understood what the other person has said. Often I wrestle back manual control several seconds later, when it is already apparent that I’ve said something completely off the mark. I come out of those sorts of situations feeling pretty ashamed and stupid.
So communicating is difficult when I am caught off guard, or if something else currently holds my attention and my autopilot registers speech before the rest of me. What about when I am engaged in and concentrating on what is being said? I suppose first, difficulty depends on the context. The more stress or pressure the conversation involves, the more likely it is that I will become overwhelmed and unable to maintain the level of filtering required to stop me responding in an overly literal, pedantic, or blunt way. Because I can do that – I can make conversation, face to face, in a way that seems superficially ‘normal’ and appropriate, to the extent that people might think that maybe I’m a bit shy and prone to using long words, but wouldn’t guess that I have a diagnosed ‘disorder’ of communication. However, this takes a huge amount of effort. It literally gives me a headache to sustain the concentration necessary to communicate appropriately with, for example, more than one client in a row. It’s comparable, although different, to the conversations I have with my academic supervisor. He knows I’m autistic, and is either forgiving of or oblivious to the frequency with which I unintentionally insult him or say something otherwise inappropriate, but the things we talk about are cognitively and intellectually very challenging, and I have to concentrate hard to understand. So in this context, it is safe for me to communicate in quite an autistic (and therefore less effortful) manner, but I have to concentrate on the content; my counselling work is conceptually much more simple, but I have to be very disciplined about my tone of voice, my body language, what I actually voice versus all the stuff I filter out on the basis of inappropriateness. To me, these feel equally challenging; the difference is that I see my supervisor at most once a week for an hour or two, whereas I see clients for 10-15 hours a week. That’s a lot of concentration.
I try to schedule days into my diary where I can work from home and not have to speak for the majority of the day. I find those days really restorative. But communication isn’t limited to speech. Dealing with my business and uni admin means emails, which are also difficult. When all your best efforts still often result in people responding with surprise, indignation, or confusion, you learn to second, third, and fourth-guess every word you share with another human being, whatever the medium. So there are no days off, not really.
To be honest, if I had known I was autistic five years ago, I don’t think I would have gone into counselling. As much as I have previously argued that there is a need for counsellors who intimately understand neurodiversity, for me it is too much communication, too much stress, and I have begun to feel sick at the thought of another Monday coming around. Spending my days in delicate conversations also means I am severely limited in my ability to engage in the kind of communication that helps me keep my mental health stable – blogging, social media, meeting up with friends. I have very little energy left for these at the moment. But I can’t really bring myself to regret the choices I’ve made, because a) I was doing the best I could at the time, with the resources and knowledge I had, and b) being self employed has been wonderful for me in other ways. I had never held down a job for more than about a year before – now I’ve been working for five years, I have all sorts of useful contacts, I’ve used my business to improve my quality of life, and to fund my studies, which have opened many doors. And even though I can see that this isn’t a viable way for me to spend the rest of my working life, counselling has been a privilege. I am constantly blown away by the tenacity and resilience of the people I have worked with, and honoured by the trust they place in me by allowing me into their pain and vulnerability. I rage at the world when they are hurt, and I celebrate their victories. I am not alien when I am with my clients; we have in common the bizarre circumstance of being tiny pieces of the universe that have somehow become conscious of themselves, and the questions that raises echo throughout our work together. In most other workplaces and social situations people strive to forget how strange and fragile they are. If it wasn’t so exhausting, I could be happy with the honesty and value of this work, and I will miss it when I do move on.
Until then, I just have to keep going – one conversation at a time.
I am closer to spring this year. We moved house in January, away from the cold, damp, densely-packed terraces and into somewhere newer, properly insulated, surrounded by trees rather than concrete. Sometimes I still feel like we’re in a nice hotel, really a bit above our means, and that it will all come to an end soon enough when our imposter status is discovered. And then I feel angry that the general state of affordable housing in this country is such that a person can feel out of place in a house just because there are no slugs in the bathroom or holes in the walls, with gales blasting under the doors, from nowhere in particular, straight through my blanket nest. I almost want to both apologise for being able to live here, and to force a few MPs to apologise for making it virtually impossible for disabled people to afford decent standards of living.
I have discovered various things this spring. For example: it is much easier to start a task, and to only sit down for the ten minutes intended between tasks, rather than finding yourself still stuck on the sofa three hours later, when you are warm. Previously, I could spend hours trying to argue myself into action, and when I did finally get myself going, it felt like trying to run up a sand dune. This I had attributed to depression, to executive dysfunction, to laziness, to, always, myself and my wonky brain. While I still often recognise the type of tiredness and deficit of fucks-to-give that is characteristic of pushing myself a bit close to burn out, and while my executives (which I persist in thinking of as little people wearing suits who are in charge of my higher cognitive functions, because it makes me laugh) still get blamed for my inability to prioritise or work sequentially, this specific issue of struggling to get started appears to have been caused by my environment. Change environment, and suddenly I am weirdly productive, albeit still approaching tasks in a rather bizarre fashion that makes my wife wince a bit.
There are parallels here with the therapy I’ve been engaged in for the last year or so. For the first time ever in my extensive history of navel gazing, I went in with a specific goal in mind: to untangle the relative contributions of trauma and autism to my general mental state. I knew from working with a previous therapist during The Supermassive Black Hole of 14/15 that I still had pretty intense reactions to certain memories, but that particular therapist turned out to be far too wedded to her own odd beliefs to be useful to me beyond helping me figure out what the fuck the star-eater at the centre of my brain was being fuelled by. Apart from having no patience for my beginning to question if I might be autistic, she’d previously come out with some impressive clangers like “antibiotics make your brain swell up” (leading to a week of panic attacks, which you’d think a therapist might have predicted in a client with health anxiety and a nasty ear infection which really needed said antibiotics), and “you don’t look like you have any problems with food now” (we all know about that one, so I won’t bother with the obvious rant). So we parted company, me in the direction of someone trained in EMDR.
My very low tolerance for quackery might seem incompatible with EMDR. It’s a truly weird therapy: basically, you hold a particular traumatic memory in mind while your therapist provides some kind of stimulation to alternate sides of your body, such as moving fingers to the left and right of your field of vision, buzzers which vibrate in your hands, headphones that click in your ears, or whatever else is available/tolerable. However weird it sounds, though, I’d heard mostly good things from people who had been through it, and I found a few meta-analyses which seemed to indicate that there was something to EMDR, even if no one was entirely sure of the nature of the thing. I had also found my only other exposure to a therapy designed to process stuck memories really helpful for the more active PTSD symptoms like nightmares and flashbacks related to being raped, but as it was on the NHS and therefore time limited, the rape was as far as we got. I’d had an awful lot of traditional talking therapies of different kinds by that point, and while these had helped me in all sorts of ways, such as building a sense of self worth and self esteem, the ability to communicate my internal experiences to others, to make sense of those experiences, to be more assertive and so on, they had made little impact on those stuck, intrusive memories. So, I thought, what the hell.
I was diagnosed with autism about six months in, and I think I can safely say that both therapy and diagnosis have helped a lot in different ways. In terms of the EMDR, the few obvious traumatic memories I had left have really lost their power. Excepting the rape, my remaining memories which felt “big T traumatic” – as in, when I thought about them it was as if I was still right there – mostly related to being inpatient ten years ago, and to a rather dramatic medical emergency during the same year. When I think about them now, I feel angry and sad that I had to go through the more avoidable aspects of those experiences, but I don’t feel like they are HAPPENING RIGHT NOW DANGER OMG.
Even more weirderer (because sometimes grammatical fuckery conveys a sense better than the proper words) working on those memories also got my brain processing some of the more subtle stuff. That medical emergency, for example, I’ve talked about on here before – but as a summary, my blood pressure dropped to the point where I spent an hour or so losing and gaining consciousness in quick succession while thinking I was about to die. It was caused by being injected with an anti-sickness drug which reacted badly with the quetiapine I was taking at the time, a combination that is now known to cause cardiovascular problems in a large minority of people. However, the doctor wasn’t taking it seriously at all – he’d seen evidence of recent self harm and medical notes showing I’d only been out of an inpatient psych stay for three months, and decided I was ‘just’ having a panic attack until he actually bothered to get a cardiac monitor. Even when he saw how low my blood pressure actually was he was unsympathetic, leaving me alone in the room with “if your heart stops the alarm will go off”. I was terrified, and I felt so humiliated. But as I worked on that memory in EMDR, and the initial terror died down, other memories which shared a similar sense of “I’m in desperate need of help, but no one is listening. I have to cope with this alone and I can’t” started coming into my mind. Things like, the rather extreme self harm I felt too embarrassed to seek help for after I was raped; being dismissed by various psychiatrists when I was desperate; trying to cope with being bullied and the subsequent stress-induced psychosis I experienced when I was 13 by myself because I was somehow unable to communicate what was going on; being inpatient and knowing that I could easily kill myself without anyone noticing until it was too late. Basically, a lot of the usual shit you get for being young and female-presenting with chronic mental health problems.
All of the above still makes me fairly irate on a semi-regular basis, especially as I see similar things happening to friends all the damn time. However, the fear and shame and injustice I used to feel when I was reminded of my own experiences has really calmed down. Now, instead of seeing those things as personal failings that I could have avoided if I had just been more in control, I can see them in context of the attitude of society towards women and mental health, the history of autism diagnostic practices, the defunding of the NHS and the overstretching of its staff, the common shame associated with growing up unaware of your own neurodiversity. I haven’t worked on this change of perspective directly, it just sort of happened. It’s like all of the highly logical things I tried to tell myself about my experiences, which I could easily apply to other people but which failed to resonate with me emotionally, suddenly just fell into place. As a result, I feel a lot more settled, less prone to being ambushed by triggers which push me into trauma-related emotional states, much quicker to notice when something is pinging one of those buttons, and more able to deal with that before it becomes a minor detour into one of the lesser indentations in spacetime attached to the outskirts of the black hole.
This is all very welcome. I have become less prone to being pulled into these sorts of states over time, especially as the rest of my life has settled down considerably in the last 5 years, and my wife has provided me with a lot of support in getting there. But I was still occasionally waking up in a completely black, self destructive mood when something had impinged on the orange blob of doom – my highly technical name for the constellation of feelings around being in a situation I feel unable to cope with, and yet having no choice but to cope with it. Trapped, hopeless, powerless, desperate, ashamed – that sense of, I can’t, but I must – and the answer was always restriction or self harm, because those were the only things that made my brain and the world feel manageable again. I can deal with those sorts of feelings much more objectively now, and I can’t even begin to say what a relief that is.
So far, so good! However, with all that untangling comes the necessity to look at what remains. That has become a process in itself, because for most of my time in and out of therapy, I’ve held on to the idea that if I could just process the trauma, I could be ‘normal’ and function in the world like anyone else. Processing the trauma has also meant accepting that this will never happen, because trauma wasn’t the only thing going on. I’m also autistic. I experience chronic stress from fairly mundane things that my nervous system is hypersensitive to, like eating, being unable to filter out background noise, navigating social interactions, dealing with unanticipated change to my routine, and so on. Self harm and imposing rigid rules and routines around food and exercise are also very common in autistic people, and I don’t think my predisposition to either is going to go away completely.
A curious balance has been reached. I am more functional than I’ve ever been. For the last two years, I’ve kept my mental health fairly stable while studying for two Masters degrees, working part time, and dealing with all the adulting that I find almost more challenging than academic work, from everyday tasks like cooking and cleaning, to moving house. I feel like I’m constantly working right at the edge of my capacity, so when something stressful comes up – certain deadlines, the house move, other life stuff that just happens – I frequently have periods of several days where I feel chaotic and overwhelmed and basically doomed, and have to scale back until my nervous system settles again. Not having posttraumatic reactions complicate that is essential, because those situations used to automatically tip over into full-scale crises when that “I can’t but I have to” button was pushed in the process of trying to deal with what might otherwise have been a few bad days due to temporary burn out. So in a way, life is easier – but it’s still very challenging, and maintaining this equilibrium requires a huge amount of self monitoring, compromise, honesty, and support.
Sometimes I feel cheated by that. I discovered the promise of psychotherapy when I was 16, and belonged to an online forum for people with eating disorders which emphasised the power of uncovering and dealing with underlying issues. This came after feeling increasingly alone and terrified from the age of about 9, when my anxiety really started getting out of hand. This is common in autistic girls, because being a bit weird is often fairly well tolerated by kids until they start getting close to puberty, when social interactions become far more complex. From that point on, it was all bullying, psychosomatic illness, dissociation, paranoia, and eventually, developing ways of coping with these which gradually took on a life of their own. So it’s no wonder that when I learned about the goals and process of therapy, I clung so hard to the idea that if I could just *deal with my issues*, I could escape all of that. To now accept that I will never be like my peers, and that aspects of their lives that I want, like a career, or children, may always require me to push myself right to the limit of my tolerance – that’s really difficult.
So this untangling of trauma and autism has made my life easier, and harder. And I am slowly working out how to live with that.
“Does anyone else find normal, boring, every day life really exhausting?”. It’s a question commonly asked in the autism groups I belong to on Facebook, and the answer, by the overwhelming majority, is always “yes”. Sometimes with added “but I don’t know why, and I feel really pathetic for struggling when there’s nothing obviously stressful going on”.
I’ve experienced different types of exhaustion throughout my life. Endometriosis-related; the kind of fatigue which often goes along with conditions which involve your body attacking itself in various creative ways, manifesting itself as the sense that I age fifty years at certain points in my cycle. Post-traumatic stress has been another cause: after certain events in my life, my nervous system has been constantly on high alert, and I’ve burnt out within weeks. My experience of depression has often been similar to this, in that I tend to become depressed after long periods of stress, especially if I have no control over the stressor. Then, I drag myself out of bed, crawl through the day in a fog, and am desperate to retreat back to a darkened room by 6pm, though even lying flat in bed feels intolerably tiring. Insomnia has brought sleepy-tiredness, so there have been times in my life when I’ve fallen asleep in classrooms, the cinema, any convenient resting place, because I can’t seem to lose consciousness where and when I’m supposed to. And, of course, there was the jittery, bone-cold exhaustion of being seriously malnourished when my anorexia was at its worst.
I sleep well now, my weight and mood are fine, I am no longer hypervigilent to reminders of trauma, and my endometriosis has been much better since the operation. But I will always answer that question with a yes, me too. So why do I still find the world so exhausting to engage with? I’m going to take you through a typical day’s worth of the challenges I deal with to demonstrate.
During the week, my day starts at 6.15am. Although I’m usually a little drowsy from the medication I take at night, in some ways this is the time of day that I feel best. I’m relaxed, calm; so far no spears have been thrown at my nervous system. The first test to get through is breakfast. I eat the same thing every weekday morning, so I have a routine that works fairly well, but I find changes difficult to adapt to. I ran out of dates last week before buying some more yesterday, and adding back in the step of chopping them into my porridge is strangely overwhelming. I need a chopping board, a knife, and I have to remember not to turn the hob up too high because the extra sugar burns my porridge too quickly – it’s not that complicated. But I have executive function difficulties: planning a sequence of actions is not one of my strong points. I open the cutlery drawer for a spoon, see the knives and remember that I need one, but then get distracted by the fact that I’ve forgotten to open the window to stop it steaming up, and why have I not turned the hob up today, that was silly…oh yes, dates! I need to chop them. While I’m looking for the chopping board I’ll get distracted by the cupboard above it because that’s where the bowls live, and while trying to work out whether I’ve already got a bowl out I will forget that the point of being on that side of the kitchen was the chopping board. And this should only be an extra five steps: find board, find knife, find dates, chop dates, put dates in saucepan. You should see me cooking dinner. How I’ve not lost a finger yet, I don’t know.
After showering, catching the bus into town is often next, either for lectures or work. The pavement outside is dirty. It hurts me. I can’t tell you how, but it makes my fingers curl, and I do a complicated dance, trying not to step on mud or worse. It’s not germs I’m worried about, it just all makes my skin crawl. Disastrously, on the bus there are soggy bits of filo pastry (undoubtedly originating from Greggs) on the floor by my feet and I am constantly aware of them. I can’t screen them out: my disgust response is on a hair trigger, however hard to try to desensitise myself. PASTRY. WATCH THE PASTRY. WATCH IT. SHOES. PASTRY. BAD. I take deep, slow breaths and try to concentrate on the sunrise.
Once I’ve seen the two clients scheduled for the day, I walk up the road to my university, which is only five minutes away. There’s a postgraduate common room, and I often sit in there to work on the computers if I have a spare hour or several. For the first hour it’s lovely and quiet, and I read through journal articles relevant to my thesis. Slowly, other students come in. One chews gum for seventeen minutes. I know it’s seventeen minutes, because I literally can’t focus on anything else, and I have to leave the room and drink tea in the little kitchen to calm down. But that’s over relatively quickly today. A few minutes later, a couple start up a quiet conversation. Normally, people quickly habituate to background noise: It might be irritating for a few minutes, but brains are generally very good at working out which sounds are irrelevant to them, and relinquishing awareness of them. I can’t habituate. Every word is like a pin, jabbing me, and I quickly start to feel anxious. Once I realise how agitated I’m getting I think of finding my earphones and listening to a rain storm on YouTube, which helps. I can’t listen to music, it has to be a consistent, non-patterned sound, because anything with rhythm, let alone words, will be impossible to concentrate through. The bass of the thunder obscures the voices, and I can think again. Back to reading.
The noise isn’t bothering me any more, but I’m still struggling to focus. I feel like nothing’s really going in. I’m reading articles on cognitive psychology, which can be a bit convoluted and difficult to understand at the best of times, but the main problem for me is that I can’t form an overview of a subject until I really understand the basics. Whereas, last year, others in my class seemed to learn just enough to be able to discuss a subject in an appropriate amount of detail for a Masters, this is not the way my brain works. My brain can’t prioritise; it can’t work out what is really necessary for understanding a topic, and what is superfluous detail. It treats all information equally, and refuses to integrate the massive collection of details on a subject until I’ve explored every rabbit hole I could possibly fall down. Consequently, I spend 98% of my time at university feeling like I’m desperately hanging on to a thousand different strands of a subject, and I still couldn’t actually describe what I know to you. There’s always a point at which everything finally comes together, and then I can actually see where I’m going – that point is exhilarating, and frequently I find that all those extra details push my marks over the border of ‘good’ to ‘great’, so there is a benefit in the long run. But it’s bloody painful going. I feel like my head might explode.
I’m working again, but after a while I notice that I feel wrong. Kind of…sad? No. Hungry? Not that. Oh, I’m cold! I am both alexithymic – I struggle to identify and describe emotions, although 16 years of therapy on and off have helped – and the physical equivalent, lacking much interoceptive awareness. I’m not naturally fluent in any of the signals my body sends, and I frequently either mix them up or overlook them until I’m half way to a panic attack because I’m too hot, or in pain because my bladder has been full for too long, or dizzy because I didn’t catch my body’s ever more urgent hunger cues. I dive under the table and turn the radiator up, and the sadhungrycold goes away after a few minutes.
Speaking of hunger, the next thing is lunch. I make this the night before, so at least I don’t have to deal with my unruly executives at this point. However, lunch is problematic on a sensory level. I am pretty much disgusted by the sensory experience of eating a lot of foods – untoasted bread, unmelted cheese, bananas, cereal, and so on. But I’m also not organised enough to make something hot (hot is easier, somehow) in advance every week, like soup, so I usually end up deep-breathing and distracting my way through a sandwich. That’s the hard part over with though – I have no sensory problems with the chocolate that comes next 😉
I’ve dealt with quite a lot of stress so far today, and my tics are getting louder and more frequent. They change every so often, as is common of neurologically-based tics, and for the last year or so it’s been sniffing and touching the side of my nose. This is part of why I’m so open about my neurological weirdness: autism is not an invisible disability for me, there are some aspects that are really obvious and easily misinterpreted. Occasionally someone from a different course shoots me a slightly strange look across the common room, and I idly wonder what they’re thinking. I don’t mind if they think I’m weird, but I do get anxious that I might be irritating them.
Ten minutes later, another group of students come in, and start working on a project together. They’re not talking loudly, but it’s enough to raise the ambient noise level a bit too far for my thunderstorm to compensate. I have to turn it off because when I can hear the voices over it, it becomes extra sensory input that I can’t tolerate. I try to work for a bit longer, but the voices are jolting me. It’s like being in a constant cycle of falling asleep, and being woken up a second later by a loud noise. I can’t cope with it and I have to pack up and leave.
So far all of the difficulties I’ve covered have been related to executive dysfunction or sensory distress. Autism is supposed to be about difficulties with social communication and understanding, and yet on a day to day basis, those are not really the things that bother me. This is mostly because of my environment: at university, the people I see most often are very tolerant of the weird. I accidentally insult people (after 18 months of working with me my supervisor laughs when I do it to him), interrupt conversations, meow randomly, stop talking mid-sentence because I’m distracted by something shiny, and misinterpret comments all over the shop, but everyone important knows I don’t mean anything by it. Even before my diagnosis, the weird was largely overlooked. There’s a lot of it about in my department.
This falls down when I’m not at home or university. After leaving the common room, there’s often something for me to do in town before I can go home. Today I’m changing my address with the bank that holds our joint account, having recently moved house. I go up to the desk – the queue is very well defined, which helps, because unorganised queues make me so anxious – and try to explain to the cashier. It all comes out wrong, with preamble that doesn’t make sense, mixed up words, and ending with me just thrusting a letter I got from the bank at her, hoping that will explain it. It doesn’t matter how well I prepare for communicating with someone I don’t know, my brain usually scrambles it. And when she replies, I don’t understand what I’ve heard, but after decades of unconsciously covering up my difficulties with processing spoken language, I automatically nod. Two seconds later my brain catches up with my ears, and I have to shake my head instead and correct her. It’s proving difficult to train myself out of this autoresponse, and I frequently end up having to go back to someone I’ve interacted with to try again.
On my way to the bus stop someone catches my arm and says hello. I stare at them blankly for a second too long before recognising the accent and general configuration of height/hair colour/clothing of my supervisor. I have mild-moderate prosopagnosia – recognising people by their faces is a struggle. People with total prosopagnosia don’t even recognise when they’re looking at a face (hence The Man Who Mistook His Wife for a Hat), and I’m not that far up the spectrum, but I frequently walk past people I know really well: my lovely and frequently-insulted supervisor, my ex-boyfriend, friends, therapists. While my brain is occupied with trying to identify them, I usually miss the first thing they say to me as well, and a blank stare followed by extended silence doesn’t make for the most rewarding or stress-free social encounters. I am quite happy to explain to people why I’ve seemingly ignored them, so I don’t worry too much about what they must think of me, but I still get caught unawares every time and it never fails to frustrate me.
Finally, I am on the bus. I am so looking forward to getting home, because at home I’m maybe 90% in control of my environment. If something is messy I can tidy it up, if it’s too loud I can turn the volume down, if I can’t string a sentence together I can just flap or meow at my wife and she’ll get the general gist without giving it a second thought. There’s still dinner to make and tomorrow to prepare for, but I get to rest after that. I can stare blankly at my laptop or read one of my endless supply of take-yer-brain-out crime novels to recover from the general cognitive and sensory overload of the day. I can’t even tell you how relieved I feel when I think about my flat, inside of which is my comforting dressing gown, the ability to make cups of tea on demand, our squishy sofa, the rustling trees, my rocking chair, and all the other things at home that make me feel safe and calm. Also my wife. Mostly my wife.
Despite all of this, I don’t hate being autistic. I wish it wasn’t all so tiring, I am perpetually terrified of burning out, and I have the ever-present sense that the world is sandpaper on my nerves. But overly sensitive perception works both ways. I am riveted by dappled light among trees, falling rain, the colours of the sunset, the sharp geometry of my favourite bridge. I can take 500 photos of the same thing, and I might grumble at sorting and categorising them afterwards, but I secretly love the orderliness of creating my own filing systems, and I never tire of looking at the same view from minutely different perspectives. I experience childlike joy when I see butterflies, or wrap myself up in an extra-soft blanket, or stroke a friendly dog. I often come across as aloof, standoffish, unable to concede a point, and a relentless know-it-all to people who don’t know me, but I also know I grow on them after a year or so: they laugh at my bizarre turns of phrase, admire my capacity for entirely useless trivia, and comment on my depthless curiosity about the world and its alien inhabitants. I am dazzled by it all. So I’m constantly tired, and frustrated, and my nerves are taut with stress on a daily basis. But I still keep opening my door and going outside.
Hello remaining blog followers 🙂 you are all very tenacious, given how sporadically I update these days!
I have been meaning to write another post for a few weeks, but life stuff keeps getting in the way. I’ve started another Masters – an MRes (/of research) this time – which is keeping me very busy. I’m currently doing a small qualitative study on gender in autistic people assigned female at birth, planning my thesis on visual perception and autistic traits, and developing software to improve the methodology of visual working memory tasks, on top of general reading for lectures each week, and keeping my business going. Somehow.
In amongst all of this, I have been coming to terms with my new diagnosis. While I referred myself to the diagnostic service, and privately believed I was finally heading towards the correct answers, having others validate this was still very surprising. I am really, really not used to having my internal experiences reflected in other peoples’ words and interpretations. Quite the opposite: what I am used to is having to fight for every tiny glimmer of understanding, and even then having my attempts at explaining what the world is like for me labelled pedantic, over-intellectualised; pathologised as a defence against ‘real’ engagement with the ‘real’ issues.
Since my assessment I have deliberately sought out other people with autism, especially women and non-binary people. And I feel like I’ve stumbled into a parallel dimension. From being a mystery to everyone around me throughout my life, suddenly I am actually quite typical, my quirks commonplace and my life full of such glaring stereotypes I can’t quite understand how the autism had been missed until now. I felt so alone, even among people with eating disorders, anxiety disorders, trauma histories, diverse sexual orientations and gender identities, nerds and geeks and freaks. Now I am one of thousands, all telling such similar stories.
I went to a conference today on women and autism, and I saw myself reflected everywhere. In speakers’ descriptions of personal experiences, and their unfiltered, tangential styles of communication, and their tics, and the way one choked up when talking about what a revelation her own process of diagnosis and talking to others like her had been, and even in noticing how many of us were transfixed by the patterns thrown by the chandeliers in the hotel function room. I can’t tell you what it is like to see myself in other people – I hadn’t even realised that was something to lack until very recently. There have been a few people over the years that I’ve been drawn to because there was something about them – and actually, I think this is it. These are the invisible wires connecting me to the few people who know me intimately. We all have at least one foot in Narnia.
I’ve had a rough idea of what autism is about for years, and I’ve kept an eye on the literature on autistic traits in anorexia since 2010 at least. But actually applying this filter to myself and my life is still very new and overwhelming. I’m not quite on top of how it feels and what it means and where I go with it now. I’ve seen other people discuss the controversy of the puzzle piece metaphor of autism – the othering nature of seeing us as inexplicable. But stealing it for my own purposes, I feel as if I have been a single jigsaw piece all my life (lost under someone’s sofa perhaps), and finally someone has picked me up, fit me in, and said – here. And here I am, part of a coherent picture at last.
My Twitter bio currently reads “Mentally interesting queer with awkward career”. I last edited it a couple of years ago during the general horror of my last episode of depression, referencing the irony of a therapist who couldn’t seem to stabilise their own mental health. But my mood has been much better for a year now: the bio might have appeared during the depression, but it stayed for the social awkwardness, and the emerging suspicion that my long and colourful history might not actually have been entirely caused by psychological factors.
A few months ago, having a slight dip in professional confidence, I tried googling variations on a theme of “counsellor with autism”. All I came up with was a reddit thread of laughably inappropriate jobs: autistic counsellor had the honour of being top of the list. With my new diagnosis, I am even more of a punchline than ever before.
I see why, and I find it kind of entertaining myself. Autism is defined, diagnostically, by social and communication impairments. I have these impairments alongside a degree and a business based on communication skills. People also find it funny because of the idea that people with autism don’t have the ability to empathise, and empathy is the very foundation of counselling.
From my academic studies, I know this is largely a myth perpetrated by poor communication (haha) of research findings by the media. While reading research on central coherence (i.e. super attention to detail, possibly also coupled with difficulties seeing the bigger picture) in autism and anorexia for my thesis last year, I also ended up indirectly learning more about empathy in autism, since a lot of studies research several cognitive traits associated with autism in one go. I eventually came to an understanding on the subject that I shared with someone asking questions on Twitter a couple of weeks ago, which I’ll mostly copy and paste here due to laziness 😉
Given that empathy wasn’t my main research subject, I should make a disclaimer that my understanding might still have some holes I’m unaware of. Having said that, it seems fairly well accepted that empathy in autism is a lot more complex than what is portrayed in the media (well, isn’t everything?!).
Firstly, theory of mind is the concept used to describe the ability to understand that other people also have thoughts. Secondary to this is that those thoughts may be the same or different to your own. This is something most children start picking up as toddlers, but seems to be developmentally delayed in children with autism. I’ve seen a review which suggests it is largely developed in typical kids by age 5, whereas children with autism typically get to the same point by around age 10, although in children with additional learning disabilities or those who are largely non-verbal it can be hard to assess.
Affective empathy is the automatic reactions people have to seeing emotions and pain in others. This seems to potentially be intact in autism. So if someone is crying, I feel pained that they are hurting and my eyes water, which can be a real pain in the arse when I’m working! Anyway, this reaction is what the general public tend to imagine is impaired in autism – the equivalent of not caring if someone is in pain.
Cognitive empathy is what seems to be affected in autism. This is the ability to quickly, instinctively understand why someone thinks or feels the way they do. People with high functioning autism often do develop cognitive empathy, but it tends to be the product of logical deduction rather than the more automatic process in neurotypicals. Logical deduction is a lot slower and more energy consuming, so this leads to slower performance on cognitive empathy tasks, and outside of a lab, lots of going quiet or blurting out something inappropriate in a heated/emotional moment. So, for example, if I’ve upset someone, the reason for their reaction only tends to occur to me later, or after someone else has helped me figure it out. But that’s not the same thing as not caring, or not being upset that I’ve upset someone because I know how that emotion feels and don’t want other people to feel like that because of me, which is more what people tend to think happens with autistic people.
Finally, this is all complicated by alexythymia, which is common in autism. This is a neurological difficulty in understanding what you yourself are feeling, and in explaining this to others. This means that sometimes people with autism might not know that they are feeling bad for someone else, even if fMRI shows the expected pattern of activation for empathic pain in response to someone hurting emotionally. I think I’m alexythymic too, although 15 years in and out of therapy has helped with this quite a bit.
(/end of technical bit)
I knew before my diagnosis that I have strengths and weaknesses as a counsellor. Judging by my long term clients, I work best with people who have eating disorders, people with high levels of autistic traits, and those who have chronic problems with anxiety or depression who want someone to talk to every few weeks rather than a third or fourth stint with IAPT involving someone trying to “fix” them in six weeks and discharge them without support when it doesn’t work again (n.b.: IAPT have their uses, but I get a lot of people who have been through the system repeatedly and have a number of very similar complaints about the process. However, I also recognise that I’m bound to end up with a poor opinion of the service because obviously I never see the successes – they don’t need a counsellor anymore!). On the other hand, I don’t consider myself to be competent, skilled, or experienced enough for trauma work, I get too frustrated on behalf of clients experiencing work-related stress, and I am uneasy working with relationship difficulties. I know my limits and I am comfortable referring people elsewhere if I don’t feel I’m the right person for them.
I am not the therapist for everyone, by a long stretch. But my longer term clients consistently tell me that I “get it”, when no one else ever has. This, to me, suggests ableism at play in my profession. An autistic counsellor is a joke: but then, does everyone really relate best to and feel most comfortable with a neurotypical therapist? As a client, I’ve felt with virtually every therapist I’ve ever seen that I’m continually having to fight against their basic assumptions about what the human experience is: every session is a variation on the theme of BUT IT’S NOT LIKE THAT FOR ME. This is often read as me being defensive, arrogant, in denial, over-intellectualising, and so on – and so the divide widens. Until my diagnosis I had no words with which to back up the basic experience – like my clients – that people just didn’t get me or me them. While I tried hard to figure out what I was doing to make everyone misunderstand me, a small voice in the back of my head complained that actually, people in the caring professions seemed to lack empathy. They just couldn’t put themselves in my shoes.
(Understandably, since my feet are only size 3.5. Which is a very literal interpretation of the phrase. Which is in itself unnecessary to say, since most of you would have got the joke. I’ll stop there before I accidentally use another metaphor and have to deconstruct it. Oh dear.)
So, the world might not be ready to understand how autistic counsellors could possibly exist. However, given personal experience as a client, and professional experience of the people I work best with, and the consistency of what the non-neurotypical minority say to me about their experiences with neurotypical professionals, I put forward the suggestion that maybe the world needs a few more autistic counsellors.
A year ago in August 2015, I was diagnosed with endometriosis after having exploratory surgery. I wondered prior to my operation whether I was making a huge mistake – whether I had such a pathological desire for validation that I would even go under the knife unnecessarily. I thought this way despite knowing logically that I had been tolerating excruciating period pain for 15 years by that point, and that other weird and increasingly debilitating symptoms related to fatigue, my bladder, and my digestive system, had been worsening ever since my periods had come back during weight restoration in 2009. I decided to go through with it anyway, but a part of me remained convinced I was making it up; that I was just oversensitive, exaggerating the problem, or lacking the ability to cope with normal amounts of pain. When I woke up to find my abdomen had four holes instead of the two I’d expected, which suggested the surgeon had indeed found something worth removing, I was so surprised (well, as surprised as it is possible to be immediately after being knocked out with ketamine. Trippy). In the following weeks, my surgery and diagnosis made a huge difference to my mental health. I was kinder to myself, more understanding when I was exhausted or feeling ill, the pain no longer scared me so much because I knew what it was, and having less inflamed mutant uterus lurking around my abdominal cavity had a big impact on my energy levels. It was, also, very validating: the pain, and the cause of it, were demonstrably real. I’d even seen the photographs to prove it.
On Tuesday last week, in the final few days of August 2016, another team of specialists assessed whether I had an undiagnosed condition which had been causing havoc with my life. Again, before seeing them I questioned whether I was just imagining things, looking for easy answers, or trying to find excuses for my inability to function as others do, when really I just needed to toughen up. I suspected the assessors would think similarly of me, and treat me like a time-waster. I wondered why I was putting myself through the risk of encountering unsympathetic professionals again, after last years’ debacle with the CMHT.
Instead, I came away with a diagnosis of autism.
The assessors didn’t just listen to me, they observed how I reacted to questions, how I structured answers, my facial expressions, and my body language. They told me beforehand that if they weren’t certain, they would seek other sources of information on my childhood to confirm or deny. But that wasn’t necessary, because they were very sure. And despite suspecting this for a while now, I was taken aback by the novelty of two NHS professionals believing me on the subject of my brain.
There is a wider conversation to be had about the way society views psychosomatic pain, or desperate, chaotic behaviour driven entirely by psychosocial causes, because these should be treated with equal respect as rogue endometrium and neurological conditions. But after everything I’ve been through and sought help for and been disbelieved or misinterpreted about, and after feeling so alone and scared for so much of my life, I suddenly have context. I have one label with which I can finally form a coherent narrative about my life, rather than 10 disparate diagnoses which hang and cling in the wrong places if left to their own devices, leaving me scrambling to pin and tuck and tie them together into something that vaguely makes sense.
Nothing has changed. I am still the same person I have been for the last 31 years. And yet everything is different.
While I was walking into town yesterday I started thinking, which is always dangerous. I remembered the sense of security and comfort my body provided when I was very ill. My ribs and spine and hips felt like anchors for my flyaway mind; they seemed the most real, solid things in my life, the only things I could really trust or depend on, even as they thinned and began to decay.
Now, I find a sense of what is tangible and safe in other ways. I hug my wife, and my whole nervous system exhales. I walk into town slightly too fast, five minutes later than I’d like to be, with my laptop and half a litre of tea in a flask in my backpack, and despite the weight on my shoulders and the burning in my legs, I feel grounded and secure in my body’s capacity to work and to not just endure this, but to benefit from it. I kneel on the earth at our allotment and weed around the carrots or the shallots, with the sun on my back and my mind talks to itself; of the warmth and the frustration of bindweed and how to organise the argument for my thesis and how satisfying it is to clear away the tangles from a wanted plant, so it can breathe more freely.
The latter doesn’t replace the former. There was something about restriction and emaciation that channelled my anxiety and subdued my mind in a way that nothing else will ever touch. Much like the way I can feel peaceful and content butterfly-spotting in a wildflower meadow, and how that is different to the oblivion of being drunk, and how peaceful and content don’t always soothe as deeply as oblivion, even if we are not supposed to admit to that. However, I know oblivion well now, and I know the way my external and internal lives constrict in tandem with my calorie intake and my waist circumference, and I feel like those are sacrifices I am not prepared to make any longer. I finally have too much to lose to lose weight.
22-28 February is Eating Disorders Awareness Week. This year, the UK is almost in tandem with the USA equivalent, which runs from 21-27 February. So all week, articles about the need to raise awareness of eating disorders and their devastating effects have been popping up in the media. And with a few exceptions, like this article, the majority of coverage has been repeating the same themes: being emaciated is dangerous (but so shocking and sensational, look how many clicks we get if we include photos), the media is harmful (and let’s pretend printing that line means we have no further responsibility to change), teenagers need to learn to love their bodies (and on the next page, Shock as Corrie Star Gains 2 Stone! How To Lose 20lbs In A Month!).
I take no issue with any of those three facts independent of each other. Eating disorders do have an extremely high mortality rate, possibly even the highest of any mental health condition, although I do sometimes wonder whether that would still hold if anyone bothered to pay attention to less media friendly, trauma-related consequences like dissociative identity disorder or certain personality disorders. A related issue is that when people hear this statistic about premature deaths, which varies from 10-20% of people experiencing eating disorders, they automatically think of anorexia and organ failure. In reality, studies such as these two from 2009 and 2011 have found mortality rates comparable to anorexia in bulimia and eating disorders not otherwise specified, with suicide being a leading cause of death. Yet this fact doesn’t sink in: not for the general public, where a quick poll of any group no more than conversationally familiar with eating disorders will show most think anorexia is the most common and most severe; and not in the medical professions, where eating disorders are treated hierarchically, with many areas of the UK refusing even outpatient therapy to people with a BMI over 17.
A further problem is the homogeneity of the personal narratives which make it into the media. The general public could almost be forgiven for assuming that anorexia is the most common and most deadly, and that it is the sole problem of white teenage girls from ‘good’ (read: affluent) families, because that describes 99% of stories published by the press. Even someone looking at my current client base might suggest this conclusion, since I overwhelmingly see students whose parents can afford private therapy. However, the problem is far more complex just below the surface.
My average client does have a privileged background, and a pretty stereotypical presentation. Most also have high-achieving parents, and have experienced no obvious trauma or deprivation. Many have fairly ‘simple’ eating disorders (as much as a serious mental health condition can ever be called simple), in which an attempt to eat more healthily or to lose a few pounds resulted in a self-perpetuating behavioural loop of restriction or bingeing and purging, possibly because some people are genetically predisposed to react this way to restrictive or chaotic eating patterns. That doesn’t mean that the assumptions made by the uninitiated are correct, because without exception, their eating disorders cause misery and chaos, none of them are immune to death or permanent disability, and all are confused and distressed by their inability to ‘pull themselves together’ and eat, despite high intelligence, ambition, and motivation. None would genuinely choose to do this for attention, or to look like a model. These are young people in a huge amount of trouble, and they deserve appropriate support and treatment. Luckily, many seem to make a full recovery.
But there’s a vast gap in my practice, as in all private therapy practices; to a large extent, also in NHS services, and certainly in the media. Eating disorders affect people of all ages, nationalities, genders, sexual orientations, socioeconomic groups, and disability status’. I know from personal experience – both my own and that of the people I’ve met through eating disorder forums and blogs – that oppression of minority groups contributes to the triggering and maintaining processes of eating disorders, and hampers accessibility and appropriateness of treatment.
To give concrete examples: trans people are very vulnerable to eating disorders, both because being underweight suspends secondary sexual characteristics associated with gender dysphoria, and because they typically face high levels of stigma and violence in day-to-day life, leading to chronic stress and trauma. People of colour experience eating disorders as frequently and severely as white people, but the attitude that eating disorders are a white rich kid problem stops them and others from identifying the problem, making it much harder to access treatment. People who started out at higher weights are often excluded from treatment on the grounds of BMI even after losing a dangerous amount of weight, and those whose natural set points are higher than average are discouraged from seeking full health in recovery, both by obesity-obsessed clinicians, and by the fact that public narratives of eating disorders overwhelmingly feature young women who are still very thin after weight restoration. Various studies have suggested that people with ‘treatment resistant’ chronic eating disorders are often those who are not neurotypical, or who have been subjected to complex trauma in childhood; people who have been failed by typical treatment. Clinicians with a narrow view of eating disorders as being caused by distorted body image, leading to pathological thoughts, feelings, and behaviours, tend to blame those who don’t respond to treatment as not trying hard enough, being too comfortable in a ‘sick role’, or having a damaged personality. If you restrict or binge and purge because it dampens otherwise overwhelming flashbacks of abuse, if you struggle intensely with sensory difficulties associated with eating and feeling full, if you cannot make anyone around you believe that you really don’t think you’re fat, you’re just terrified of vomiting or choking or of the safe numbers changing, treatment providers that do not accommodate diversity will most likely fuck you up and then blame you for their short-sightedness.
That isn’t to say that abuse, neurodevelopmental conditions, gender diversity, or other factors associated with oppression don’t affect people who appear on the surface to meet the stereotype. To a certain extent, this was true of me. I am white, I was assigned female at birth, and I’m a bit of a perfectionist who has had the opportunity to attend university. I grew up in a family which struggled to make ends meet, but there was a period during my teens when we were comfortably well off, and my parents did have a go at funding private therapy for me. Again, when I was really unwell seven years ago, I was able to go back to live with my parents, where I didn’t have to work or pay rent, so could afford to seek private therapy. I am uncomfortable when people suggest my recovery is purely due to factors internal to me, like determination, or ‘bravery’, because actually, I was in a very privileged position, being able to take an entire year out from my life to focus on my recovery. If I’d had to work during that period, if I had bills I couldn’t pay, if I had been entirely dependent on the NHS to get me better, I feel it is very unlikely I would have managed to drag myself out of that hole.
This isn’t because the NHS is always incompetent at treating eating disorders, or that being employed is inherently stressful. This is because I didn’t fit into anyone’s model of anorexia. I had a long, complicated history of repeated trauma, self harm, extreme side effects from antidepressants; I had no body dysmorphia, but was still terrified of gaining weight. I never told anyone at the eating disorder unit that I identified as queer, both in terms of sexual orientation and gender identity. I also have a neurodevelopmental condition – a tic disorder – but my myriad other signs of neurodiversity were never picked up or connected to my problems with eating. My fear of gaining weight was driven by associations between numbers and safety, not the way those numbers looked on my body. I really suffered when my hormones started working properly again during refeeding, both because my history of being raped made me very uncomfortable with sexual attention, and because I have never fully identified as female, and my body seemed ill-fitting. I had very little social support, which people involved in my treatment put down as the result of me dropping out of education several times, but in reality was also related to the fact that I really struggle to interpret and join in with social behaviour, and as a consequence have made very few friends in ‘real life’, as opposed to the internet, where it is easier to think through interactions before engaging. The eating disorder unit I went to made attending therapeutic groups mandatory, and my inability to cope in groups, and the staff’s complete lack of awareness of why this might be, led to my discharge at a low weight the first time around. Several years later, I now suspect that I’m on the autistic spectrum, and am on a waiting list to be assessed by the local diagnostic team. Even if it turns out I have high levels of autistic traits but don’t meet the diagnostic criteria, this issue was enough to make my experiences of treatment first punitive and blaming, and then inaccessible. Treating those with eating disorders as a homogeneous group fails so many of us not represented by the clinical and popular idea of what EDs look like.
Hilde Bruch, author of the famous book on anorexia “The Golden Cage”, heavily pushed the stereotype of the young, white, female, perfectionist with rich, overachieving parents. It seems that she made the mistake of assuming her clients, who like mine, could afford therapy, were a representative sample of people with eating disorders. Similarly, the media has a confirmation bias problem, in that journalists seek what they expect: young, thin, white girls with a single episode of illness, hospitalisation, and a supposedly full recovery to a thin body. Eating disorder activism is also populated with young women who fit conventional Western standards of attractiveness, and giving time and energy to activism is much easier for people who have financial resources. That’s not to say that there is no one out there who has gained a platform purely through merit, and I can think of several people who don’t fit the usual mould at all – just that it’s easier if you have contacts and money. This goes equally for parents and carers – conferences, networking, and awareness raising can be expensive and time consuming. The net result is that the dominant narrative about eating disorders is a very narrow story, which does not take into account the way various forms of privilege and oppression intersect to elevate some and render others invisible.
It’s so important for the full diversity of eating disorder narratives to be visible. It would benefit the people who feel uniquely untreatable and invisible; it would extend the public understanding of eating disorders to reduce misunderstandings and myths; and it would suggest to the current powers that be in eating disorder research and treatment that their pet theories are not universally applicable. I don’t know how to change this, although I’m grateful to the internet for giving more people the ability to create a platform and a voice for themselves. Still, online communities are easily dismissed, especially when related to mental health, and when they voice things that people with a vested interest in the dominant narrative don’t want to hear. What we get is emaciated photos and horror stories to shock people into recovery (like that ever works), calculations of how much we cost the benefits system and NHS to guilt us into eating, inspiration porn about celebrities who have overcome their problems and how you could too (if you had that sort of money), articles on body positivity showing well-proportioned women with flawless skin, and magazine editors arguing about whether BMI restrictions on models are necessary or oppressive to the extreme end of the spectrum who are naturally model-thin. This is what I see every eating disorders awareness week, and it is bullshit.
I don’t know what is needed, but more of the same awareness raising is not it.
It’s been a while, hasn’t it? All the things have been happening, so I thought I would post an update. I’m writing more regularly on my other blog, but I’m not sure I’ll ever abandon this one completely.
I was having a really hard time when I last posted. I still am, to a varying extent. I got a bit of a reprieve part-way through last year, in August, after a diagnostic operation to determine whether I had endometriosis. Having spent most of my life trying to cope with excruciating period pain and IBS, fielding repeated suggestions that it was all a physical manifestation of my anxiety, it was a huge relief to be told by the nurses when I came round that the surgeon had found something to remove. I had small spots on my ovaries and uterosacral ligament, but the biggest patch, and the culprit for the pain, IBS, and other weird symptoms I’d been experiencing, was in my Pouch of Douglas. Post-op, it took me a couple of weeks to recover, but once my stomach muscles had stopped spasming every time I moved (not painful as such, more a kind of whole-abdomen hiccup!), I felt so much better. Not particularly in terms of pain, although the absolute worst, top level, can’t-remember-what-my-name-is-right-now pain seems slightly diminished – but I had so much more energy, and my mood was definitely lighter. I don’t know whether it was the reduction in inflammation (it turns out that bleeding into your abdomen is pretty bad for your health. Who’d have thought?) or the validation and relief of finding out what was causing all the pain, but I suspect both helped.
Apart from surgery, the only recommended treatment to stop it returning is progesterone-based medication to halt ovulation, which I was very wary about for several reasons: on top of the fact that progesterone and depression don’t always mix well, and that ovulating is quite useful if you have fucked up bones from anorexia, I’m not massively convinced by the research. So, my GP put me on amitriptyline, which is used for neuropathic pain as well as being an antidepressant. This was a huge risk, given my usual reaction to antidepressants which target serotonin, and the even worse reaction to those targeting noradrenaline, because amitriptyline works on both. But I’m on a tiny dose (like, less than half the recommended starting dose for depression), and while it’s not done a thing for the pain as far as I can tell, my IBS has all but disappeared. What’s more, because the endometriosis was sitting on/near some important nerves which made my bladder incredibly sensitive, calming those down has let me sleep properly for the first time in years. I didn’t know how sleep deprived I was until I was only getting up a couple of times during the night, rather than the usual 5-10 times prior to the op. I didn’t realise how ill and exhausted I was.
And it’s a good job that I have a bit more energy, because in September I started a Psychology Masters with an incredibly high work load. I’m just about keeping up, which is a bit of a shock because I still kind of expect to drop out of every course I start, despite having finally finished my BA. The course is really interesting though – much of the work necessary for assignments is self-directed, so I’ve ended up familiarising myself with all sorts of random topics, like the supposedly cognitively-enhancing powers of green tea (spoiler: it’s bollocks), the evidence for and against brain training interventions, arguments around genetic and environmental influences in personality development, the historical development of psychology as a science, all sorts.
Properly learning about heritability has been quite eye opening. I spent a good few years insisting that eating disorders were biologically-based, and that trauma/abuse couldn’t play a role in their development. I suppose my own grasp on recovery was so fragile that I had to hang on to the idea that if I just ate enough for long enough, everything would get better – I couldn’t imagine surviving otherwise. My impressively shitty mental health over the past two years has forced me to reconsider, but even if I had remained mostly stable, I think I would have had to let go of that idea at some point. It’s not just my personal experience that contradicts it, it’s delving into the methodological problems inherent in behaviour genetics, learning about gene X environment interactions, reading about the profound effects trauma has on developing brains. Even in the absence of personal experience, science doesn’t support the idea that mental health problems are entirely, or even mostly, based on faulty wiring or unfortunate genes, and there is every reason to believe that trauma can directly cause mental health problems. I know that’s not the case for everyone, but it’s certainly not universally untrue either. I wish I could apologise to everyone I argued with or invalidated in my quest to ignore my own experiences of abuse.
That’s part of the reason I wanted to update this blog. I want it in black and white that my opinion has changed, because I was so strident about this in the past, and I am certain that hurt people. It’s hurt me as well. I’ve spent the last eighteen months with my current therapist trying to undo the damage that not acknowledging the abuse for so long has done. I had it pretty much shoved in my face by an episode of self harm in May 2015 that I almost needed surgery for. In the last few months I’ve finally accepted that I have been profoundly mistreated by many different people at many different points in my life, and trying to deal with the emotions involved without hurting myself again. It’s been incredibly painful, but it’s also helped so much. Now I have a way of understanding the urges to self harm – why the urges reappeared when they did, what sort of things trigger them, which thoughts and feelings act as a warning that I’m about to be overwhelmed by them. I was always missing the context. It’s kind of fitting that 2015 was the year in which a surgical procedure immeasurably improved my mental health, and yet I also realised that my experiences were more important than biology. My body has always been awkward 😉
December and so far, January, have both been hard. More triggers, more urges to re-enact shit from the past, more trying to combine who I have been with who I am and who I want to be, and multiple exams and assignments to keep me distracted in between the existential crises. On the plus side, I’m having great fun (no, seriously, it’s fun!) planning and working on my thesis, I have been married for over a year, and my career is going well. I saw butterflies in 2015 that I’d never seen in Newcastle before. My wife and I have been keeping an allotment since last spring; it was beautiful in the summer, and although having dozens of Large White caterpillars vomit on me while I was pulling them off our broccoli was a low point (fluorescent purple vomit, at that), we managed to grow a pretty impressive amount for our first year.
I’ve leave you with my favourite photo from 2015, from our first anniversary trip to the Lake District. I’m sure I’ll be back at some point.