The first post on this blog – where I am and (some of) how I got here
How I worked it out
So how have I got to my current ripe old age without realising I’m autistic? I’m 54, you know! Well, it turns out that girls and women tend to show the symptoms differently from boys and men. Because of the way we’re socialised to conform to norms and be compliant – “good little girls” – we tend to mask our differences and difficulties in an effort to fit in. So we’ll hold in meltdowns rather than completely losing it, work hard to learn the rules of social communication, and generally attempt to appear the same as everyone else. This is a whole different struggle to that of people with the traditional “male” presentation of autism, and often results in depression and anxiety.
Ever since Rachel and I got together, in 2016, she’s been saying she thinks I’m autistic. She knows a lot about it, having been late-diagnosed herself (at 46), and after a lot of self-study on the subject she knows pretty much all there is to know about current thinking on autism.
For four years I couldn’t identify with being on the spectrum (a controversial term – see below). I didn’t see myself as anything other than neurotypical. I can communicate effectively with most types of people in many different ways, I don’t have many sensory issues, I don’t stim – engage in repetitive physical behaviours such as rocking to self-soothe (actually I do, but I didn’t realise it then), and I certainly don’t show any of the typical male-pattern autism symptoms to any great extent. Between then and now my daughter was diagnosed by Nottingham’s NHS Asperger’s Service as autistic, and even that didn’t trigger any recognition of similar traits in myself. Then, around four weeks ago, something (I’m not sure what) made me realise that actually I might be autistic. I investigated online tests, and found a couple of well-thought-of tests – RDOS and RAADS-R – both indicated a high probability that I’m autistic.
This graph represents my results of the RDOS test. After completing the test, each of five skill sets are scored according to both neurotypical and ASC typical answers (based on a large body of evidence). As you can see, my scores showed a common ASC distribution, and it’s only in the area of communication (a topic for another blog post) that I score anything other than very low on the neurotypical side of the graph. I score consistently highly on the neurodiverse side though.
What is autism anyway?
“If you’ve met one person with autism, you’ve met one person with autism.”
Stephen Shore, often quoted by the autistic community
Some autistic people don’t like calling the range of presentations a spectrum, because to them that implies a linear continuum. It’s nothing like that. There is a whole collection of autistic traits (and often co-morbid conditions such as ADHD, OCD, learning disabilities, sleep disorders, and many more) which any given autistic person will pick and mix from to give them a unique set of diversities. So the spectrum is not one-dimensional, rather it has many dimensions, and autistic people are scattered among those dimensions. Look at the difference between the way males and females tend to present, for example.
To meet the criteria for a diagnosis of autism (according to DSM-V – the latest revision of the US mental and behavioural conditions diagnosis tool) it’s necessary to show the following:
Persistent deficits in social communication and social interaction across multiple contexts.
Restricted, repetitive patterns of behaviour, interests, or activities.
Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life).
Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
These disturbances are not better explained by intellectual disability or global developmental delay.
These are broad criteria, but as a set they do, I think, distinguish between people who are autistic and neurotypical people who have a couple of the traits and say “everyone’s a little bit autistic”. That, as it turns out, is a very annoying thing to hear. I used to think that way decades ago, but at least I know better now…
I went private for my assessment – once I’d decided to go for a diagnosis it seemed important to get it done quickly, to confirm what the online tests were telling me.
I’m lucky enough to know someone who knows Wenn Lawson, an autistic researcher into autism and a qualified clinical psychologist who is trained to diagnose autism, particularly in adults. Wenn has written many books on the topic, and he will only carry out assessments for people who are introduced to him by someone he knows.
As part of this assessment I had to provide a 2-3 page summary of my life under several headings, highlighting any areas that could indicate a diagnosis of autism, and I had to complete three detailed questionnnaires. This included one which listed many/most of the possible traits an autistic person might display, where I had to indicate whether or not I believed I had that trait. Just going through these forms and writing my life history gave me a lot of insight into how autism has affected my life, which I’ll share in future posts.
In this blog I want to examine a few questions about my autism:
What is the effect of my diagnosis on my sense of identity?
How does it affect the way I look back at my life and deal with the emotions arising?
Which traits do I have and how do they manifest?
Why am I so good (for an autistic person) at communication?
What am I less good at, and how can I cope with the difficulties that I have?
How much have I masked/camouflaged my autism over the years?
… and probably lots more besides. I’ve started to write about these in a private (handwritten) journal, which I’ll base my blog posts on. I hope my writing will be entertaining and informative, useful to other people in my situation, and helpful in enabling neurotypical people understand more about autism. I also hope readers will engage with my posts, either by commenting or contacting me directly.
A lot has happened over the last year, and reflecting on it all is going to take more than I’d expect anyone to want to read in one go. I certainly don’t have the spoons to write about it all in one go. So this is the first of two or three posts about my 55th year on this planet.
It’s been a hell of a year, one way and another. Not as bad as other people’s, so I’m not complaining, but as it’s my birthday (happy birthday to me!) I thought it would be a good time to reflect on the last twelve months. At the beginning of 2020 I was getting back on my feet after a long period of depression, I’d got a job with Harmless for four days a week to complement my ongoing one day for Five Leaves, and was finally back into full-time work for the first time in over a decade. The superb team at Nottingham’s Specialist Depression Service had got me onto meds that worked for me, and I felt pretty good about life.
But then things started to happen. This time last year, although we didn’t know it, Rachel and I were both coming down with COVID-19. Rachel had caught it through a work contact and I’d caught it from her. It hadn’t really sunk in yet how serious things were going to be, even though thousands of people had already died in Italy, even so I had a very subdued birthday – I can’t even remember what we did.
On the 16th, Rachel had an interview for a lecturing job at Nottingham Trent University. .. and she got the job despite her raging impostor syndrome (of course she did, she’s brilliant!). By the time they told her, on the 18th, she had obvious COVID symptoms and was feeling awful. A couple of days later I too fell ill, and was off work for a week. Although I wasn’t too badly hit by the immediate symptoms, it took me months to recover properly. By August I could climb the stairs without my leg muscles screaming and my lungs struggling to draw breath… I’m still not too fit, but that’s probably because of lack of exercise and far too much weight gain during lockdowns.
Rachel, on the other hand, still can’t climb the stairs without having to collapse on the bed for a rest before she does anything. She’s been so ill – she’s been taken to hospital many times by ambulance and admitted twice – she’s had a pulmonary embolism and at least three suspected TIAs (mini-strokes), plus numerous other symptoms of long COVID. We’ve had very little help from our GP, so we’re still struggling on without any answers. The government and NICE pay lip service to wanting to deal with long COVID, but out here in the real world there is little to no acknowledgement that it even exists, let alone willingness to try to help.
So, I’ve been doing all of the cooking and housework (when I can), running errands, shopping, etc. for a year now as well as full-time work. And it’s taught me something about myself – I’m not actually a selfish person. I thought I was – not sure why – probably something to do with being chronically depressed for many years, which does make me self-centred. But I honestly don’t mind helping and doing the extra work. It doesn’t feel like payback for the years I was depressed and dependent on Rach to bring in the money either, it’s just the natural thing to do. I guess it shows the strength of our relationship – we go through shit times but we’re still ok, we just get on with it and do what needs to be done.
On top of all that, unlike for many other people, both my jobs increased in workload because of lockdown. Harmless immediately lost a major income stream due to face-to-face training being cancelled, and at the same time there were gazillions of emergency COVID funding streams to apply to, which more than filled the four days per week I work for them. Five Leaves took a while to get back on its feet after closing the shop on March 23rd, and furloughed all staff except me and the boss – I could carry on with publications work at home so there was no reason for me to have a paid “holiday”. By May I’d taken on online events as well as publications, and was working around two days a week for them. I was so busy I hardly noticed the weirdness of lockdown – working 50-60 hours at home, nipping out only for essentials, worried about Rachel, and just putting my head down and getting it all done. I started to get quite overwhelmed with it all, but I was coping, just. I’d finally reached the top of the waiting list for therapy, and online therapy was soon to be available, so all I needed to do was hang on till that started.
Rachel started work at NTU in June, as planned, despite still being quite poorly. It took her a while to get used to how lovely her colleagues are, and how willing and able to help – very different to most of her previous jobs. Luckily she wasn’t required to do any teaching till the autumn term so had some time to settle in, which was a good job, as they weren’t really set up to support staff working from home, especially new lecturers without much academic experience.
Then I had a call from my psychiatrist – the meds I was on had become unobtainable, so I had to quickly switch to another MAOI. This was torturous. I had to come off the ones I was on over seven days, go two weeks with no antidepressants at all, then slowly work up to the full dose of the new ones. I needed nearly two months off work – it was as if I’d been pitched off a cliff back into the angry freezing sea of depression without any warning, just as I’d got used to having my feet on solid ground again.
On investigation, I discovered that there had been manufacturing problems with the initial drug since even before I’d started taking it, and the NHS had been relying on stockpiles to see them through in the hopes that manufacturing would start again in time. This was against the advice of the Royal College of Pharmacy – it was clear production wasn’t going to restart any time soon, if ever… but the new drug costs five times as much as the old one, and the NHS has to cost-cut wherever it can. (I won’t get into a political rant here, you’ll be glad to know. Just be aware that I have MUCH more to say on the subject.)
By the time I got back to full-time work in late September, Rachel had had her first major health scare – a pulmonary embolism requiring her to take blood thinners for an indefinite (long) amount of time, followed a week later by all the symptoms of a brain haemorrhage. I’ve told the story elsewhere of the ambulance men who were going to leave her at home despite clear and obvious symptoms of a PE – we complained about that but didn’t get anywhere as the only other evidence was the ambulance men’s testimony, which was a total pack of lies. The fact that she did in fact have a PE is irrelevant, apparently. Anyway, there were no signs of any brain bleeds, so she was back home after a few days with a week-long severe headache caused by them needing to try six (SIX!!) times to do a lumbar puncture.
I think that’s enough of the story for now. Reflecting back, and with the knowledge I now have that I’m autistic, most of my emotional reactions to the circumstances are perfectly understandable, although I was confused by them at the time. The true horror and magnitude of COVID and the UK government’s criminally negligent mismanagement of the pandemic don’t seem to have touched me emotionally at all. Likewise, when Rachel was showing acute and potentially dangerous symptoms, I felt emotionally detached. The rational part of my mind was worried sick, but the possibility of Rachel dying never made any sense to me – still doesn’t.
I’ve learned a lot more about empathy since my diagnosis in August – I’d always thought I was quite empathic, but now I know about the difference between cognitive empathy and emotional/affective empathy, it’s clear that I have the former and not the latter. So I can think and reason about how other people are feeling, and about how I might be feeling if certain things came to pass (and feel compassion and a desire to help), but I can’t feel the emotions myself without actually being in that situation. I’ve written about this from a slightly different angle in an earlier post so I won’t go into it again here.
This has been a long first post on a long twelve months, so I’ll stop now. Next time I’ll write more about my relationships with family and friends, and how those have changed (or stayed the same) over the last year. Some of those relationships have been profoundly affected by my autism diagnosis, others have been affected by other events, and some haven’t changed at all. I’m aiming to write the second post next weekend… hopefully it won’t be another five months before my next post on this blog!
Heavily edited version of journal entry written on September 18, 2020
Just after I’d had a hearing test that showed I have mild to moderate hearing loss in the higher frequencies, I was reading one of the Facebook autism groups and I came across mention of Auditory Processing Disorder (APD). It sounded interesting so I looked it up. Basically it’s a group of problems with processing auditory information that are located in the brain rather than the ears.
What is APD?
There are four areas of auditory skill that are affected:
auditory discrimination: the ability to distinguish distinct, separate sounds iin words
auditory figure-ground discrimination: the ability to focus on specific sounds in noisy/competing backgrounds
auditory memory: the ability to recall (short-term and/or long-term) information presented orally
auditory sequencing: the ability to understand and remember the order of sounds and words
It has several effects, for example:
an inability to retain auditory information
slow processing of sounds / speech
being overwhelmed by auditory input
the effects are worse in some situations e.g. on the phone
becoming “deaf” to loud noise when focusing on something else
an inability to distinguish similar speech sounds from one another
difficulty concentrating when there’s background noise
difficulty enjoying music
It was a revelation to read this. APD describes many of the problems I have. There are indications in the research literature* that it is often comorbid with autism, and going by a lot of posts I’ve seen on Facebook it seems likely that it is. In fact, many of the symptoms and effects are overlapping, so it would be surprising to me if the two weren’t related somehow.
So, what’s my experience relating to APD?
I find it difficult to remember or extract lasting memories from information presented orally, for example:
I can listen intently to a weather forecast and have no idea at the end of it what the forecast is for my area. This is weird in the extreme. I hear all the words, I understand them all, but because the information is presented in a loose unordered way I can’t extract the bits I’m interested in. I don’t have the same problem with the shipping forecast – that has a clear structure from which I can take the specific details for the area I’m in. But even then I have to write it down or I’ll forget it.
If I attend or watch a talk or lecture, I have to take notes to stand a chance of remembering any of it. Interestingly, I don’t usually have to refer back to those notes afterwards – just the effect of converting the information from one format to another is enough to create the memory.
If I ask someone for directions, I either have to write them down or, better, convert them into a map. Even if there are only two steps, I’ll get them confused or out of order. Was it first right then second left, or second right then first left? Or maybe second left then first right? I have absolutely no idea.
I really struggle in noisy environments, partly because I find the noise overwhelming (it feels like it’s racing round inside my skull, turning my brains to jelly), but mostly because at even a moderate level of noise all the sounds merge together and I don’t have a hope of picking out speech, even when it’s distinct enough against the background to theoretically be comprehensible. In my student days I hated going to nightclubs (unlike my NT friends) because I felt totally left out when the people I was with would happily chat away to each other despite the noise.
I don’t like phone calls for several reasons – for one thing I can’t lip-read on the phone. One thing I’ve discovered as a result of COVID is just how much I rely on lip-reading. I think I always have done, although my hearing loss is relatively recent, only over the last 5-10 years, I think. Two other (autism-related rather than APD-related) reasons are: first, that I can’t see the other person. I do have some problems with reading facial expressions and body language, but at the same time if I miss what someone has said, a strategy I’ve learned (if I don’t want to ask them yet again to repeat themselves) is to check expressions and body language for a clue as to how I should be reacting, then I can bluff. And second, I have absolutely no clue when it’s my turn to talk, so I either interrupt or leave uncomfortable silences. (More often the former, I have to admit.)
I am forever having conversations that go something like: other person: “Blah blah blah blah.” Me: “Sorry, what did you say?” Other person: “Could you…” Me: “It’s ok, l’ve got it now.” It’s as if I think I haven’t heard, but a second or two later my brain finishes analysing its recording and deigns to give me the information. It’s very odd, and other people definitely find it weird and frustrating. I must be a delight to talk with!
I do have tinnitus, which is a bit unfair as I didn’t overload my ears with loud music very much when I was younger because I hated it – see above. It’s constant these days, and it’s gradually changing from a quiet buzz to more of a ringing. It gets worse when I’m tired or stressed, which to me indicates it’s more likely to be in my brain rather than in my ears, so it could be tied in to APD.
I frequently mishear words, substituting soundalike words, which can lead to some weird misunderstandings. Of course, I can’t remember any examples (poor auditory memory, remember?), but trust me, it’s usually hilarious and often rude! Oddly, I often misread words on the page as well, substituting other words that look like them. I wonder if that’s a similar or related processing disorder?
A decade or two back, I went through a phase of going to see as many productions of Shakespeare’s plays as I could, mostly at the RST in Stratford-upon Avon. Like everyone, I found it difficult to follow the language – it was only the skill of the actors that meant I could follow what was going on. I thought, well, that’s normal. No-one really understands Shakespeare… until I went to a production of Hamlet (the one with David Tennant – astonishingly good) which had “subtitles”. That discreet orange glow just across from where I was sitting was a revelation. When I could read the text as it was being spoken, the meaning was clear as day, even though it was written in sixteenth-century English. I’ve mentioned this to a few people, and only other autistic people have experienced a similar dramatic improvement in comprehension.
On a related note, I really struggle at live poetry readings to properly take in the poems (also true for fiction readings although to a lesser extent as there is (usually) a plot to cling on to). This means I don’t retain anything of the poems I hear, and I have to take a notebook and physically write down anything that strikes me as worth remembering. I can, however, listen quite happily to an audiobook, although even with them I lose track of the story occasionally.
There are probably lots of other aspects of my auditory processing that are disordered in some way, but I don’t know what they are because all I know is how my mind works – I have no idea what’s normal or expected.
So there’s lots of stuff going on with my auditory processing, and I don’t really know how much is standard human stuff and how much is down to autism and/or APD. I seem to cope pretty well though, having developed strategies over the years which help me overcome my difficulties. I guess this is a general observation for many undiagnosed (and diagnosed) autistic people and for most of the difficulties we encounter – we don’t realise they are difficulties, so we just get on with it, doing the best that we can.
Edited version of journal entry written on October 2, 2020
When it comes to fight, flight or freeze, I’m definitely a freeze person. I am absolutely useless in an emergency. I remember numerous times when the kids were small and had minor accidents – never anything serious, thankfully – and I would completely seize up. It wasn’t that I didn’t want to help, or even that I didn’t know how to help. I just couldn’t react at all. Nothing has changed in the intervening years. I really feel that at my age I ought to be able to deal with the unexpected bad things that happen, without having to take five or ten minutes to recover the power of thought.
I don’t know whether this is related to autism, but it makes sense that it could be. I don’t think I was always this way – I remember reacting quickly and strongly to similar situations when I was a young child, and being told to shut up or calm down (or both), which invariably, of course, had the opposite effect to that intended, and got me into even more trouble. So I learned to mask my emotions in this and many other ways… and I think it might have led to temporarily stalling my thought processes as well, while I worked out how I should be reacting. It’s all part of the general attitude in my family that showing emotion is a Bad Thing, and this freezing in an emergency is an unfortunate side-effect. I could be over-thinking it, of course, I could just be that way naturally.
There are a couple of other aspects of my behaviour which tie in somehow. The first is my seeming inability to grieve deeply. I first experienced the death of someone close to me on December 14th 1991 – I was 25 at the time – when my grandmother died. We’d always been close, and although she’d been getting more frail, I hadn’t expected her to die. She died alone in hospital from diabetic ketoacidosis, which is not a pleasant way to go. I only found out she’d been taken in after she died, when Mum called to tell me the bad news. She was ready to go – the last time I saw her she said she kept having this dream where she was sinking into the earth and she wasn’t in pain any more, she felt at peace. Then she said I should write my name on anything of hers I wanted when she died, because it wouldn’t be long. It didn’t really mean anything to me at the time, as I had no concept of what death actually meant. So anyway, when she did die, or rather when I was told she’d died, I lay on my bed for a while waiting for grief to hit. Surely I should be crying? But it all felt like something far away, not really connected to me. I did cry when I saw her body, and at her funeral, but apart from that there seemed to be no grief going on at all. Some years later one of my best friends died after a long battle (and she did fight) with cancer. I was there when she died after driving at ridiculous speeds from Nottingham to Scarborough when I heard she was on her way out. It was desperately sad – her son (about 21 y.o.) who had already lost his dad at the age of 12, was there with his girlfriend, and I was so inconsolable that they ended up comforting me. I left soon after, and didn’t cry again until her funeral… and I haven’t cried for her since. It was even the same pattern when my dad died. I cried briefly when my sister called to tell me he’d died, and a lot at the funeral. I have shed the odd tear for him since, but nowhere near enough considering how much I love him. And as a matter of course I cry at the least provocation. It’s really weird how detached I seem to be about the whole thing. I miss them all, but the emotion that “ought” to be there is either buried or missing. My instinct is that it is there but somehow I’m detached from it. Is there something wrong in my head, I wonder?
The second aspect of my behaviour that puzzles me is the detachment I feel when anything in the least bit emotion-provoking is happening. This year, for instance, has been pretty bloody awful all round. In particular, Rachel has been ill since we both had COVID-19 symptoms in mid-March. She’s got so many bad things going on it should be paralysingly scary. But it feels like it’s happening to someone else, most of the time. Sometimes, maybe once a week for a couple of hours, I get overwhelmed by everything that’s going on, but for the most part I’m ridiculously calm. I’m not even getting depressed about it all, which is very unlike me. It really does feel as if there’s a missing or broken connection in my head.
And there’s a third aspect. I’m absolutely crap at maintaining friendships, and it doesn’t seem to bother me. I’ve had some wonderful friendships in my life, and somehow drifted out of touch with most of them. There’s a lot of “out of sight, out of mind” going on in my head, I think. I tend to hyperfocus on my immediate surroundings and problems, which means if I’m not actually with someone I don’t think of them very often. It’s something I’ve noticed about my family – we’re really bad at keeping in touch with each other, and none of us seem to mind. When we get together it’s marvellous, there’s clearly a lot of love and an immensely strong bond between us all. And when I do phone my mum (once in a blue moon) we have brilliant conversations which always leave me feeling warm and happy. Similarly with friends – when I see good friends I have a great time, and I come away thinking, “I must make more effort to contact them more often.” But I don’t, and even when I think, “I should really get in touch with so-and-so,” I seem to have this inexplicable barrier that stops me doing it.
So. Is this “just the way I am” or is it a protective mechanism I’ve put in place to protect myself from being overwhelmed by, well, life? And does it matter? I guess as long as I’m functioning and reasonably happy most of the time it’s OK. But when it stops me worrying (on the surface) about Rachel when she’s rushed into hospital and diagnosed with a pulmonary embolism, or when she’s rushed in with a severe headache after being on blood thinners for a week, surely there’s something wrong? Although, when she was taken in again a week later with chest pains and severe difficulty breathing, I was in bits. The difference was, Caty had gone to university by that time, so maybe subconsciously I knew I didn’t have to keep calm for her sake. and I allowed myself to have (or realise I had) those emotions. So I really don’t know if my seeming detachment means I don’t have emotions I’d expect to have a lot of the time, or I don’t allow myself to feel these emotions for some random reason. Whatever – something’s not right, and I wonder if it’s just because of autism… or not… and if I should try to change.
Two more posts from my daughter. I found the first of these incredibly hard to read as her mother, but I’m so proud that she wrote and shared it, and that she gave me permission to share it here.
Ok, time for some honesty about where I’m at. A few people have been messaging me of late, and I may not have been entirely truthful to them all… In my experience, people don’t really know how to react when “How are you doing?” is responded to with “Really not well”. But – but – I’ve been doing some thinking. People being able to talk openly about mental health is something I wish was more of a thing, and the only way I can think of to push things that way with what few social skills I possess is by doing so myself. If not me, then who? And if not now, when? Bear in mind, there are definitely people with more severe mental health problems than mine. There are also people with less severe mental health problems than mine that nonetheless still struggle. As far as I’m concerned, the struggle of anyone with mental health problems is at least as valid as mine, no matter how minor it might seem – each person only experiences their own challenges, and comparing the struggles is a pointless, divisive exercise that only serves to stop people from feeling like they can voice theirs.
With all that said, obviously this comes with a content warning, but more specifically, I’ll be talking about: depression, anxiety, feelings of hopelessness, fear. Maybe another day, if this is well received, I’ll talk about other bits.
A final piece of groundskeeping before I begin: I’m writing this today because Lilly pulled me out of a pit yesterday. I don’t think I’m better than I was before, but she’s convinced me that I should try to get better, because I hadn’t realised I’d given up. What I mean to say is this: I don’t post this out of a desire for sympathy or need for action – gods, I don’t know if I could cope with the former or what I’d want from the latter. I also don’t want this read as a red flag – I’m getting support at home, I have no intention to harm myself and I’m working towards getting professional help, even if doing so is an uphill battle. The purpose of this is solely as stated above – or put another way: Mental health problems are stealth conditions, among other reasons because it is a taboo topic. The only way to change this is to challenge the taboo, and the most effective way to do so that I can think of is to break it. I write this not because I need people to send me love or well-wishes and certainly not because I want attention, but because there may be other people out there who need those things but don’t feel like they can say so. If this convinces even one person that they can, then I have done what I set out to do.
Right. Enough procrastinating.
I’m not doing well. Not at all. Getting out of bed can take an hour, getting to sleep takes longer, and the sleep I get is broken and far from restful. I won’t talk about the causes here, but I suffer from long-term depression and anxiety (as in: at least 10 years, probably longer), which compounded with my natural difficulty sleeping, my ADHD and autism and the fact I’m trans and bi make life… Difficult. Anyone who tries to organise anything with me almost certainly sees some of the end effects – missing arranged meetups being a big one, but also the fact I fail miserably to keep in contact with anyone. But Facebook of late is flooded with posts from people I know (mostly two specific people, but I won’t name them here for sake of their privacy) explaining how the effects people see aren’t intentional, and are in fact something that causes people like me great stress and distress.
What’s less common is explaining how life in general feels. So I’m going to start that by outlining how a general day goes by from my perspective. I wake up, after a night of restless sleep and anxiety dreams or full-blown nightmares. I lie in bed, feeling barely more rested than when I went to bed, and I don’t get up for some time in the vain hope I might catch just a little more sleep. If I do, it is inevitably filled with worse dreams than the ones I’ve already had.
Eventually, I drag myself out of bed and get dressed, having accepted I’m as rested as I’ll get. There’s about a 40% chance I’ll remember to have breakfast, if I’m not reminded to. I’m not great at noticing when I’m hungry and making breakfast can seem like a lot of effort. I am immediately confronted with the washing up I haven’t had the energy or spoons to do, which means one of the first thoughts in my mind – after having dealt with the dysphoria of getting dressed – is that I’m failing at keeping up my share of housework. I know, logically, that I’m washing anything that’s needed as it’s needed, so it could be so much worse, but I have to remember to stop and tell myself that, and even then the words ring hollow.
I make coffee next, because with the sleep I’m getting there’s no way I’ll ever get anything done without caffeine. As my mind is dragged into consciousness, the intrusive thoughts start in earnest. These colour everything from here on out, so I might as well go over the greatest hits here: the thought that I’m a burden on the people I care about, the thought that people don’t actually like me, the thought that we might run out of money for no reason, the thought that nothing will ever improve. At least a few times a day, my mind tries to tell me I should hurt myself, but I’ve only been tempted to give in maybe five or six times in my life, so that one’s distressing, but won’t result in action. The last thought I’ve become very good at seeing as not me, the others not so much.
I do my best to try to find something to throw myself into that will take up my attention to keep those thoughts at bay, but for a start being able to focus on any one thing for long is difficult, and no matter how engaging something is, there’s always gaps for the intrusive thoughts to worm in through.
It also makes getting anything done a pipe dream. I’m so busy trying, and usually failing, to find just a few minutes where I don’t feel crap about myself that getting chores done never seems to be the next item on the list. To put into context why it’s in this order – in the small time it takes me to go to the loo, I can go from a state of mind where I’m coping, if only just, to one where I want to cut myself off from the whole world. Doing something like the washing up, when that takes place in the room reminding me, in my mind, of my failure as a person, becomes a daunting task at best.
That, by the way, is a wonderful example of the self-perpetuating nature of these things. the more I fall behind on washing up, the more I hate myself and the less capable I am of catching up. Likewise, the longer it is since I last had a bath or shower, the more I hate my body and the harder washing it becomes. Et cetera.
I’ll check Facebook every day or two, but if I get a message I may notice it, decide to reply in 5 minutes and then forget it’s there for a week, and then feel too anxious to respond when I remember it’s there. I’ll check emails once a day as well, but I haven’t received one with good news in a long time.
Tasks are certainly piling up faster than I complete them, but somehow Lilly’s been keeping me just about afloat on that front…
The day will end not by any point on the clock, but when I’m tired enough that I might be able to sleep in spite of the inevitable onslaught of anxieties about things I forgot to do, people I may have once offended and things that might happen.
If that was a difficult read, I’m truly sorry. In that case, I give you this second suggestion of a point to stop reading- I don’t want my suffering to become yours. Scrolling past, be it for your mental health, your attention span or just because this isn’t something you want to read, doesn’t say anything about you as a person. I say that not because you need to be told it by me or anyone else, but because if I was reading and no-one pointed this out to me I wouldn’t think it, and because I believe it to be true.
Those are just the tangible, immediate, everyday issues I have. There’s also the existential despair at the state of the world. From a personal perspective of seeing my right to exist as a trans person being the subject of regular debate and political point-scoring to the horror of the widespread police brutality against people of colour, and farther afield to ongoing humanitarian crises and full-blown genocides that are currently being committed, the world to me is a nightmarish hellscape where every day I wonder if I’ll be safe, while knowing countless other people live in the certainty that they are not. It’s not that I don’t see solutions to these problems – whether or not I do is irrelevant when compared to the fact that the people capable of implementing solutions have no incentive, and seemingly no desire, to do so. Added to this fire is the fact that the world is almost literally on fire, and I don’t see any way that that’s going to get fixed, and I can’t think of a better metaphor for what the world feels like except it’s real.
We’ve covered the general and the existential, so I guess it’s on to the specific to finish things off…
To start, transitioning is a painfully slow process, which ain’t great, so there’s that. It’s also a dumb, poorly implemented system and everyone gets a set budget that gets allocated to their transition that, in the words of the person overseeing mine, isn’t based on any sort of sane estimate on how much the average transition costs, and not all transitions cost the same amount anyway, so that’s… Fun?
There’s also the fact that every time something goes wrong around me I seem to either have been trained or have trained myself to blame myself for it.
Time for a brief interlude where I give some backstory to give full context to the last bit. First off, as long as I can remember I’ve struggled with dealing with authority figures, no matter how slight the power imbalance. For reasons I refuse to go into I find myself unable to contradict, oppose or argue against them in almost all circumstances. If they say a thing, then at least until I’m out of their presence, that thing becomes law. I hate this fact, but considering its root cause it’s going to be a mess to untangle and is one of the things I’m hoping for professional help for.
Secondly, since I started acknowledging that I needed help in university, and then since crashing and burning out of uni, actually getting professional help for anything has been… Difficult does not begin to do it justice, but that’s a whole other story. The short version is I’ve been variously fucked either by bureaucracy or by GPs not actually taking me seriously. I’m sure however many of you have read this far can relate to at least one of those…
I can’t afford private help, not with benefits the way they are, which is hilarious because unless I get help I’ll never be able to get a job and be off benefits. Thus, I look to charity groups and free programs. The problem is, the free service offered by the NHS and local government caught me in a bureaucratic loop that I think I might still be stuck in, though I’ve stopped checking at this point because getting out of it would just mean starting the whole, very long, process again, meaning I’d be getting bounced from place to place by people telling me I’m too complex, or I shouldn’t have been sent to them, or similar.
I recently got in contact with one charity, which was great, until after my second session I got a series of cancelled appointments before the person on the other end seemingly dropped off the earth (I’m trying to follow up). The other one I got pointed towards currently, due to high demand, has closed their waiting list which they hope will be back open by early November. At this point, I’m so used to not getting the support I’m asking for from organisations like this that I’m stuck feeling like I’ll never get the help that I need, and that my mental state is going to remain like this forever. I’ve struggled with these problems long enough that I’m not even sure what getting better looks like any more. I dread being asked what I want to do with my life because, honestly? I don’t know. Surviving has been all I feel like I can manage for too long.
So that’s me. I haven’t covered everything, obviously, who can cover literally every aspect of how they’re doing in anything less than a book? But that’s the big parts. In an ideal world, I wouldn’t have done this all in one long post, because I’d be talking about these things more freely, but oh well. To everyone who made it this far, I’m sorry. But also, I don’t want solutions to any of these problems here – even if you have a perfect one that I haven’t heard before, the point of this isn’t that. It’s my attempt to begin to normalise the idea of being allowed to take space to talk about these things for no reason other than to be heard. A response that tries to give a solution, while always well-meaning and intended, reinforces the idea that we can only talk about these things when directly seeking help. An analogy, if you’ll indulge me: if someone complains to you about their boss, or about a terrible driver they contended with, or something like that, a lot of the time they don’t want you to tell them what to do next time the situation comes up. They want for someone to hear them, without judgement, and to just listen. It’s one of the main ways humans are able to convince themselves that their feelings are valid. I hope that makes sense.
11 September 2020
For the sake of a lighter post to balance the one I just made, I realise I do what I can to make myself come across as intelligent, thoughtful and the like when I post things on Facebook.
I once spent 20 minutes staring at a patch of floor looking for a Lego boat. It was on the bit of floor I was staring at, but my brain had stopped at “Lego” and was looking for individual lego bricks. I’m at least as dumb as the rest of you in real life ^.^
I haven’t had time to write anything over the last week or so for personal reasons, so I thought I’d share a few posts my daughter has made on Facebook recently. They give her perspective on being neurodiverse (she is 25, autistic and has ADHD) and are well worth reading to get another perspective. I’ve learned a lot from her and am in awe of her bravery and intelligence. I am, of course posting them here with her permission. I’ve made a comment or two in square brackets.
14 May 2020
So today Lilly [girlfriend] and I put up a thing on the wall, only to discover it wasn’t quite level. In preparing to fix this, I checked the desk it’s above – also not level, but at a different angle. On a whim, I also checked the floor the desk is standing on. Also not level, also at yet another angle.
I have come to the conclusion that the world isn’t worth saving. If people could put their proposals for total global annihilation below, it would be much appreciated.
25 June 2020
I’ve had the glory of being diagnosed with ADHD and being on the autistic spectrum, but having received, as of yet (other than advice from friends), no support for either. While I’m finally on the path to getting some help, a lot of the damage has been done – it wasn’t until I was in my second attempt of first year at university that I was diagnosed with ADHD, meaning that I’d had 20+ years of just thinking that all my struggles in education and life were my fault for not just trying harder, when often I was already pushing myself in a harmful way. Even then I got no support offered. I crashed out of my third attempt at university with no support, and only after that was diagnosed as on the autistic spectrum, and once again I got no support – I missed one meeting and never got another offered to me.
I’ve had a few years of realising that a lot of my huge struggles with interacting with people and systems are because of these things, but that’s not been able to undo the damage of two decades of not only me blaming myself, but other people getting annoyed or angry with me, every time I fail to account for and overcome the way my brain is wired even though I did not know it was wired this way.
Even now, the best I can do is apologise for and explain when I get things wrong, forget or the like. This often gets responded to by people asking me what can be done differently so I don’t make the mistake again. The answer I always give is that I don’t know, but what I want to say is, “Why should it be up to me to find the solution? I’m already playing at a disadvantage in general human interaction. A sick person isn’t asked to discover the cure, a short-sighted person isn’t asked to invent glasses or know how and why they work. If you want to help, there’s something you’re likely far better equipped than I am to do: research.”
To clarify, this isn’t aimed at anyone or any particular interaction or anything, it’s just something that’s been bubbling around in my mind of late, and this thing I’m sharing seemed as good a time as any to talk about it.
Another thing I want to raise: If I haven’t replied to a message, missed your birthday, etc, it’s not because it isn’t important to me. Importance doesn’t help me to remember to do something. I try, I really do try, to keep up communications with people, but I’ll look away from my messenger and next thing I know it’ll be a month later and I can’t even remember what I was meant to message you about, only that I forgot to and, of course, as much as I know why I’m like this it always makes me feel like I’m a terrible person… Again, I don’t have a solution, I only ask for patience.
6 July 2020
Before I was diagnosed with ADHD and autism, I was aware of many things that I struggled with, but considered them to be simply things that if I just put more effort into, if I just tried harder, I’d be able to overcome. This was, obviously, bad for me. My mental health and physical wellbeing both suffered as a result, but there was a sense of it being in my control. Once I got my diagnosis, however, with no follow-up support given, it’s left me feeling that I’ve lost that sense of control, however false it may have been. Like there’s aspects of being “normal” that I’ll never be able to achieve. I’m aware, of course, that “normal” isn’t a thing to be aspired to in general, but some of the differences I have do just flat out make my life harder, from my perspective, even if it could be argued that society should be the one shifting to accommodate folks like me, similar to adding ramps for people who can’t do stairs. It doesn’t though, and so I feel like my life is made harder by this thing that seems out of my control, rather than how I used to feel like one day I’d be able to just work past my difficulties by raw force of effort.
This isn’t to say the diagnosis was bad for me. Like I say, the way I was pushing myself was incredibly harmful, and I’m dealing with that damage to this day. I am, rather, saying that just knowing what’s wrong isn’t a solution, and can leave someone with a sense of comparative powerlessness, especially if they have no real understanding of what can be done about it either by them or those around them. On top of this, if it’s people around them that can make the most impact in terms of accommodations etc, explaining what can be done, how it will help, and why it needs to be done (yes, I find most people need all three) to every person you interact with is exhausting, to say the least.
As a side note, if anyone reading this wants to help make the accommodations necessary, the best place I can suggest to start is by doing some research of your own, assuming you know what to research (be it a particular neurodivergence such as autism, a physical ailment, LGBTQ+ stuff, mental health, or something else). I would say, though, that implementing something you’ve researched without asking the person beforehand can come across as patronising. So, like, ask the person in question, “Hey, is this a thing I can do to help?” and don’t be upset if they say, “Actually, no, that’s not helpful for me specifically.” Remember also, trying to help may not always be met with gratitude, which may suck, but there’s usually a reason. At this point we’re getting beyond what I feel informed enough to speak in depth about, so I’ll leave it at that…
8 September 2020
Thought out of nowhere – there’s a lot of stuff out there about accepting the differences of autistic and ADHD etc people, and I’m completely on board with this as someone who has both… Problem is, at the moment those differences make life incredibly difficult in ways most of society isn’t built to help with or accommodate for, so calls to accept us neurodivergent folk, or to celebrate our differences, can sometimes ring a bit hollow.
To clarify, I’m not saying the people behind those calls don’t mean it or don’t support us, most often they do, it’s just hard for me to celebrate my differences when the ones I notice most often are sources of stress or difficulty…
It doesn’t help that it can be hard to see the ones that don’t pose challenges, because I’ve never known anything different so to me they aren’t differences.
Edited version of journal entry written on September 9, 2020
I’ve seen a lot of posts on Facebook autism groups about trying to work out your identity after an autism (self)diagnosis. I’m not sure how much I identify with this – I’m still me, despite yet another label being stuck on me. I know how I think and I’m reasonably self-aware. I ought to be, after years of therapy for recurrent treatment-resistant depression, but I do question some things. How valid are realisations about myself that I’ve come to through all that therapy?
If the therapy was based on the unspoken assumption that I’m neurotypical, might some of the conclusions about my thought habits, feelings and behaviour be incorrect? For example, one of my core beliefs is that only my best is good enough, and even then it might not be good enough. So if I don’t do my best all the time I’m failing. Through many sessions of discussion I’ve come (or been led) to the conclusion that I believe this because as a child I would only get praise for succeeding (from parents and teachers). I’m not sure now how much this is true. The examples I’ve thought of where I didn’t get praise could all be interpreted differently. My parents could well have been disappointed in me when I didn’t try (for whatever reason) – if I had tried in my O-levels and got the same results they may well have given me the praise I definitely didn’t get for a respectable set of results – they knew I could have done much better, so why should they praise me?
I think maybe I’ve been externalising the source of that rule to some extent. In the light of knowing I’m autistic, it makes more sense to see at least some of that rule coming from a desire for perfection, for things to be “right”, whatever that might mean for any particular thing, so the exam thing might be due to a conflict between wanting/knowing I could do better and another autistic trait of challenging norms that just don’t make sense:
I have the intelligence and academic ability to get top grades in exams in just about any subject I might study (certainly at O-level), so there’s no excuse for not achieving those grades
the whole system of education leading to and being assessed by exams is inherently flawed and does not predict or contribute to success in Real LifeTM. Therefore it’s pointless.
Anyway, back to my identity. During my first severe bout of depression in 2007/18 (leaving aside my encounters with teenage and post-natal depression), one of the things that was constantly on my mind was that I felt like just a collection of roles – mainly mother, employee, friend, daughter and sister. I felt like I couldn’t find a space for myself as “just me” – I was defined by my relationships to other people or organisations. I felt like I was playing those roles rather than them being part of my identity – that all I was was the sum of the roles. I’m less convinced of this now – significant roles I play are a part of my identity. I have always been my parents’ daughter. Since my children were born I have always been their mother. The “been” in those two sentences shows that the relationships are more than just roles. I am Simon and Inori’s mother, I don’t just play that role. “Employee” is different – for all of my jobs (except as a publisher/jack-of-all-trades.at Five Leaves) I never really felt as if I was that particular role – it was simply a set of activities I performed to earn money.
So l’m not the sum of what I do, or even a subset of that. There’s more to me than my relationships – if you shut me away in a box I would still be someone. I’m never quite sure who that someone is – how on earth do you untangle your essential self from the relationships you have with other people? I guess the only way is to try living without those relationships, which is clearly impractical.
And then there are the non-role labels – clever, autistic, depressive – which are also part of the definition of self. They’re different in some ways, mainly in that they’re attached to me in whatever role I’m playing, so does that mean they’re more a part of my identity?
Trying to work out how to pull it all together has been the basis of my quest for my identity for many years. And it’s really felt important.
Now, with this new “autism” label to add into the mix, I’m questioning whether the whole thing is an exercise in futility, or is at the very least shooting off in the wrong direction. I have relationships, but my identity is not bound up in them per se, more in how I behave within and think of those relationships. I have labels but they do not define my identity, rather, they describe aspects of that identity, and it’s the way I react to and use those labels that’s important. My intelligence does not define me, but the way I use it is an intrinsic part of my identity. My autism does not (re)define me, but some of my autistic traits do contribute towards my definition of myself.
So, all in all, I think my identity is an active process – how I choose to behave and think – rather than a set of adjectives that try (and fail) to define me. Yes, I am a mother, but my identity is that of a mother who explicitly chooses to demonstrate affection to make sure my children are secure in the knowledge that I love them, to be open and honest with my children as far as possible so they feel they can be the same with me, and many more conscious choices I’ve made as a parent. And yes, I am intelligent, but that’s only part of my identity in the way I choose to use my intelligence. Getting adequate O- and A-level results without doing much revision is nothing to be proud of, but choosing to go back to studying in my 40s and working really hard to gain good marks is something I’m immensely proud of. People are often impressed by the fact that I’ve got a PhD – they shouldn’t be, I spent 3 years dossing and wrote a mediocre thesis that did not contribute to original research at all. I would have been much prouder of it if I’d put the effort in, and used my intelligence to make it a valuable and useful piece of work.
There’s a lot of rambling going on here, and I’m not sure which direction it’s headed in. I think if I’m going to tackle the question “Who am I?”, I’m going to have to identify everything that contributes to my sense of self and work out how it feeds in. I don’t know why it’s so important to me at the moment to do this, but I’m sure that it is.
Q3. If I try to imagine something, I find it very easy to create a picture in my mind. definitely disagree
Q8. When I’m reading a story, I can easily imagine what the characters might look like. definitely disagree
I’ve long been interested in visual imagination when reading and writing – I’d noticed when I was a teenager that I tend to skip descriptive passages in fiction – they don’t interest me at all. When I started writing seriously (when I was in my early forties), the aspect of writing I struggled with most was descriptive writing.
I spent some time thinking and talking about this, and discovered that my visual imagination is severely lacking compared to most of the people I know. I remember being very startled, on watching the first Harry Potter film, to discover that Ron Weasley has bright ginger hair. It clearly says all through the books that he does, and it’s a particularly notable visual characteristic, so you’d have thought I would have noticed and remembered it. However, I had no visual image of any of the characters at all. Or the settings, or the various creatures that make an appearance. I mentioned this to several of my friends, and they were, without exception, extremely surprised.
If you look at the AQ-50 test, two questions explicitly refer to lack of visual imagination, so it is seen (by some, at least) as an indicator for autism. I’d never thought it was particularly odd, although I had wondered why people waxed lyrical about, for example, Hardy’s descriptions of the Dorset landscape. With a severe visual imagination deficit, it was next to impossible for me to appreciate this sort of writing. To me, it was just getting in the way of the story. but to other people it seemed to give a whole extra dimension to the writing that I could not appreciate.
Narrative imagination deficit
Q14. I find making up stories easy. slightly disagree Q40. When I was young I used to enjoy playing games involving pretending with other children. definitely disagree Q50. I find it very easy to play games with children that involve pretending. definitely disagree
Also on the AQ-50, there are three questions about narrative imagination – the ability to make up stories and play “let’s pretend” games.. Perhaps surprisingly, as I am a writer, it turns out I’m no good at this either. I remember, when we were children, my brother would try to involve me in “let’s pretend” games. He’d make up the most amazing and detailed scenarios – I remember one where we were on an aeroplane that was about to crash and we had to find a way to survive – and he was most disappointed that I just could not play these games. I was unable to develop (and had no interest in developing) the story, and I couldn’t put myself in character. My mum once said I had no idea how to play until my brother came along.
With my own children, a game we used to play as a family was “story circle”. We’d take it in turns to say a sentence, adding to the story. I used to dread playing that game, because I could never think of what might happen next. Interestingly, my daughter (also autistic) hated it too, because she always knew what was going to happen next – she has excellent narrative imagination – and would get very upset when someone else came up with a sentence that contradicted her ideas for story progressions.
Can I be a good writer?
So, I have visual and narrative imagination deficits. How can I be a writer?
Well, over the years, having not done too well at short-story writing or novel writing, l’ve settled on poetry as my preferred genre, although I also like writing creative non-fiction. In some ways poetry is all about creating images of one sort or another, but that can include images of emotions, or concepts, or reflections, or events, or the nature of life. This is very firmly where my poetry is based. I’ve tried many times to include sensory descriptions in poems, but so far it just hasn’t worked.
What I can do, however, is build images by combining small-but-significant aspects of whatever I’m writing about. or by giving examples that evoke images, and for poetry this is a perfectly acceptable and effective way of writing. A lot of contemporary (particularly American) poetry is about evoking an emotion by juxtaposing sparsely-sketched images. So, for example, my poem “Four Months in Scarborough” (see the end of this post) tries to evoke my emotions around my last outings with a close friend who died of cancer, by more or less just listing impressions that have struck in my mind from those days. It isn’t particularly visual, although there is some visual description in the form of adjectives associated with objects, but for me it evokes the essence of that time and the emotions that were going through my mind.
Do autistic people lack imagination?
High levels of autistic traits were significantly associated with lower fluency scores on the divergent thinking [creative] tasks. However autistic traits were associated with high numbers of unusual responses on the divergent thinking tasks. Generation of novel ideas is a prerequisite for creative problem solving and may be an adaptive advantage associated with autistic traits. … Impaired imagination being a core feature of autism, it seems paradoxical that there are high profile cases of people with autism who exhibit creative flair in their fields of special interest.
Best et al, ‘The Relationship Between Subthreshold Autistic Traits, Ambiguous Figure Perception and Divergent Thinking’, J. Autism Dev. Disord. (2015), 45, pp 4605-4703.
I don’t think we do. I believe our imagination often works differently from that of neurotypicals, and because it’s unusual and divergent it’s seen as a deficit. And of course, every autistic person is different – look at the huge difference between my imagination and my daughter’s, for example.
I’ve said it before, and I’m sure I’ll say it again, I like the way I think. I don’t really miss the visual and narrative forms of imagination – I can imagine emotions and concepts and links between all sorts of things that other people don’t see, and I can (hopefully) express what I imagine through my writing in interesting and unusual ways.
Four Months in Scarborough
North Beach sand, tickled by the sea,
wriggled in my flip-flops. I stumbled,
looked back, your face framed by light
tossed from wave-tips. You laughed,
took photos of late summer,
bees and hedgerow chandeliers.
A rainy autumn Saturday. Litter, gulls,
pigeons, uprooted primulas,
barely restrained children.
Umbrellas brim-full of salt air.
Fish and chips,
bread and butter,
a pot of tea for two.
You said you couldn’t eat tomatoes any more.
I leant over, kissed you, stole a chip.
We were late—I couldn’t push you
fast enough up the hill. The lift was hidden,
the three steps to our seats too steep,
and I had to eat your icecream.
The play was dire, but we held hands
and giggled until the encore.
The fountain tries to weep frozen tears.
Fields creep to the hilltop
under snow and fog
while I read aloud. The words don’t matter.
Your eyes stay closed all night.
I want to stroke your hair
when you wish me a happy new year.
I’m over 50 and only just diagnosed, so I’m in that category. I’m not sure I ever thought of myself as a bad person. alien or non-human. I did, and do, often think of myself as broken, but that’s more to do with my depression than any sense of difference from other people.
I have always felt different from my peers. At school, this was partly because I was more intelligent than most of the other kids in schools where intelligence was mostly looked on as a bad thing – even by some of the teachers, who felt threatened by a child who was more intelligent than they were and wasn’t afraid to show it. That’s how it felt to me, anyway. Why else would they shut me down when all I was trying to do was point out that they’d got something wrong? And the other kids were always very quick to jump on me when I “showed off”. I remember thoroughly enjoying one lesson in second year junior school (year 4 in today’s money, I think). We’d been given a load of simple crosswords to try to complete. I had no problem with any of them, and quickly became known as the go-to person to solve anagrams that even the teacher couldn’t work out. And before that we’d been set as homework the task of coming up with a crossword that was 6×6 with only 6 black squares. With the help of my dad I managed it. So I took it in to the lesson proudly, and the teacher copied it for everyone to have a go at. One of the words in answers was “hod” – a bricklayer’s carrier. Even though I’d given the teacher my answers, she refused to believe “hod” was a proper word, and substituted “hog”. This completely screwed the rest of the crossword up, so everyone thought I’d made a rare mistake and teased me mercilessly. I was also bullied afterwards for my skill at anagrams. Why didn’t the teacher just look up “hod” in the dictionary? It felt like she’d deliberately sabotaged me – I was already aware she didn’t like me without knowing why. And why did the other kids hate me for being good at intellectual stuff? One of the boys was a brilliant footballer, and he was a hero, so why was I bullied for being clever? It didn’t make sense, but I assumed they must be right because apparently even the teachers thought so.
There was another occasion, this time in first year secondary school (year 7), where I’d been put into the top maths set. I found a problem I couldn’t solve, so I put my hand up to get the teacher’s attention. This was already against convention – far too polite. She noticed from the other side of the classroom and asked me what was wrong. “I’m stuck, Miss,” I replied. The whole class erupted into laughter, jeering at me, seemingly very pleased that I was stuck. I didn’t understand this for two reasons. Why was it funny that I couldn’t do a problem? And why me in particular? – as far as I could tell I hadn’t done anything to deserve being picked on.
I remember my first day at secondary school very clearly. First years had to go in a day before everyone else so we could get used to the large school without being swamped by hordes of bigger kids. I walked to school with a friend from primary school. While we walked up Beechwood Avenue a couple of older kids spotted us in our lovely new uniforms and followed us up the road yelling “swot.” I didn’t get it – surely they’d done the same thing in their first year – so why were they yelling at us? Then we got to school and found our classroom. The first thing the teacher did was go through the register, asking us to stand up when our name was called and say if there was another name we preferred to use. Her instructions were very clear, so when she called out “Phillippa Hennessy”, I stood up and announced, “I prefer to be called Pippa.” That sealed my fate as the posh weirdo (I was very well-spoken at that time – I soon adopted the horrible Reading council estate accent to fit in – but too late). Years later, when I was home from university for a holiday, I bumped into a lad from my class, and he mentioned that incident. I’d obviously made a strong (and bad) impression, simply by doing what I was asked to do. I couldn’t figure out why at the time, and I still have no real understanding of why people need to pick on and jeer at others who are different.
My first encounter with racism was equally confusing. In second year junior school (year 4), there was a black boy in my class. One day he came up to me, crying, and said, “Pippa, you don’t think I’ve got fleas, do you?” I couldn’t see why anyone would think that, so I reassured him I didn’t, and he thanked me profusely. Apparently the other kids had been teasing him mercilessly about having fleas. I don’t know when I realised it was because of the colour of his skin – certainly not immediately – and it never did make sense.
A year later I became even more of a class pariah in another incident with the same boy. We’d been looking at pointillist paintings and were tasked with making our own pictures just using dots. These were put up on a board, and I was given the job of putting them up. The black lad brought his picture of a clown to me – he’d only used dull colours, greys and browns. so I (perfectly reasonably, I thought at the time) told him to go away and put more colour on it. He added a few dots in a drab olive green and brought it back. I sent him away again, and he started crying, which seemed to me at the time to be a total over-reaction. The other kids rallied round him and accused me of being mean and being a racist. In my mind neither of those was true. I certainly wasn’t being racist, and I didn’t think it was mean to help him “improve” his picture.
I could cite so many other incidents where I just didn’t get what was going on. Up until I was about 13, when I decided not to care (that didn’t work, of course), I seemed to spend my schooldays in a perpetual state of confusion. Even though (and perhaps because) I felt accepted and valued at home – in terms of my intelligence, at least – I learned that that really wasn’t the case outside of the safety of our four walls. I tried really hard to fit in, but I just didn’t get it, and failed miserably at every turn. I was obviously a weirdo, and that was all there was to it. There was something fundamentally wrong with me. That belief is really hard to shift even now. Logically and emotionally. I like the way I think, I like being different and able to offer alternative perspectives. I love the way my mind can make connections other people find difficult and/or uninteresting – they fascinate me and seem much more valid than, for example, an abstract god as a basis for finding meaning and wonder in the world. But underneath it all is a nagging doubt. Is being different really such a good thing? So many of my childhood experiences have shown that other people don’t think it is… so I guess I must be wrong. Wrong to be different in the first place, and wronger still to enjoy and revel in that difference. That has set up a real cognitive dissonance in my self-image. I both like myself and hate myself. How am I supposed to process that? It could well be one of the root causes of my depression – an evidence-based view that I’m somehow a bad person for standing out in the crowd, for just being me. Maybe that’s why I find it so hard to be proud of what I’ve accomplished.
Whenever I compliment Rachel on being a wonderful person e. g. for becoming involved in LGBT activism awareness, or going a long way out of her way to help other people, she says, “I’m just me, I just do what I think is the right thing to do” – which implies she thinks it’s nothing to be proud of. I’ve certainly got some of that going on, because of the above and many other childhood experiences I’m not proud of my academic achievements – or I won’t let myself be proud, although there is a little bit of me that is. I’m just good at studying, good at writing essays and doing exams, there’s no reason to be proud of skills that I was born with. Quite the converse, according to my school peers. And I’m very quick to see the flaws in what I’ve done, which is another reason not to be proud. Take my PhD, for instance. My basic thesis was uninteresting and not particularly new, and it could hardly (in my eyes) be considered original research. so what is there to be proud of? I basically dossed for 3 years. and the only aspect of it I take any pride in is that I’m the only person I know who killed the Balrog in Moria – a rudimentary game played on a VT-102 terminal with ASCII graphics that I spent an inordinate amount of time playing, to my supervisor’s disgust.
So, looking at all of that in the light of my autism diagnosis, it begins to make so much more sense. I didn’t stand out as different just because I’m a weirdo, or broken and bad in some way. It was because I think differently from the neurotypical majority, because l’m autistic. And because I’m autistic, I don’t truly understand a lot of social conventions, and I’m forever accidentally transgressing one norm or another. (I’m all in favour of deliberate transgression to make a point, highlight inequality and idiocy, and try to change things for the better, by the way.) Because of that I’m often mocked or called out for doing or saying something “wrong” which seems perfectly reasonable to me, by such a wide range of people that it’s hard not to draw the conclusion that the problem is in me rather than in the way society is prejudiced and biased towards neurotypical norms.
I understand much more now why NTs need all the social conventions that make them feel secure in their own social circles. I still don’t like that I’m often excluded from those circles unless I expend huge amounts of mental energy to hide my true self and conform to those conventions. It isn’t right and it isn’t fair, and it’s really not good for me.
Edited version of journal entry written on August 22, 2020
The main reason I didn’t believe Rachel when she said I’m autistic is that I didn’t recognise ASC traits in myself – I thought the way I behave and think is neurotypical. A prime example of that is my ability to communicate. I’ve always been good at written communication, possibly a result of reading so much throughout my life – I started reading aged 2 and was reading fluently by the time I started school. I can instinctively tailor my writing to a specific audience, expressing myself clearly in a voice appropriate to the intended reader. It’s always seemed obvious to me how to do it – work out what the reader is likely to want to know, and how to express that so they will understand what you’re telling them without having to make too much effort. So, write in a style they’re used to, use language they use themselves, understand their priorities. Easy, right? Well, yes. When I’m writing I can organise the content, write notes then expand on them, edit sections that don’t work, then when I’m happy with what I’ve written, transmit it to the reader.
Spoken communication, on the other hand, has been much more difficult to get the hang of, for so many reasons:
I don’t understand social cues, like when it’s my turn to talk, or when the other person is getting bored or not understanding what I’m saying.
l’m not very good at organising my thoughts in my head – I have to write them down to get them in any sort of shape – which makes anything other than very simple spoken communication difficult – I often get frustrated that I forget points or put them in the wrong order.
l’m easily distracted from the main point of what I’m trying to get across, which means I tend to meander off on side paths and dilute whatever point I’m trying to make.
It’s impossible to edit speech, so I often say the wrong thing (or the right thing in the wrong way) then have to backtrack or explain what I mean, and I often upset people because I can’t work out in my head how to say what I want to say in a way they’ll understand.
I have a strong tendency to “people-please” – to say what I think someone wants to hear rather than what I want to say. In spoken communication there’s no chance to spot that and edit it out. Also, my initial reaction is always to agree to whatever people ask of me, and again it’s hard to spot that so I agree to a lot of stuff that I shouldn’t.
I like (need?) to use the right words for what I’m trying to say – it’s important to me to express myself accurately – which means:
I can sound pompous or pretentious
I often use language not appropriate for the other person
I get stuck when I can’t think of (or google) the right word
I have to think very carefully all the time about what I’m saying
All of this, and probably lots more I can’t think of at the moment, makes spoken communication really really exhausting and difficult.
Oh, I’ve just thought of another point of difficulty:
I can’t do small talk. I don’t see the point of all the inconsequential bits and pieces that are seemingly an essential part of NT communication protocols. Why should I spend time and energy (and it does take energy) saying and hearing stuff I’m really not interested in?
This is an interesting point, because it can be used to demonstrate many of the reasons I find spoken communication so tiring. Small talk is a conventional (NT) way of establishing a connection with the person you’re talking to. It feels to me like a kind of mutual fishing around for common ground. And that seems daft, because surely it’s better to talk about something that actually interests you? Also, I very quickly get bored with stuff that doesn’t interest me, and covering that up is exhausting. I have to be constantly aware of my expression, my body language and my tone of voice anyway, and if I have to fake interest and active listening it takes even more of a huge mental effort (more on the mental effort of communication in a later post). Ironically, it also takes my attention away from what’s actually being said to me, so I don’t even hear what the other person is trying to communicate.
The whole point of communication is to exchange information (NTs may disagree!) – so why on earth do we spend so much time on this activity which doesn’t achieve that? It makes no sense at all to me.
Because I can’t do small talk without a huge amount of mental energy, I avoid it wherever possible. And that makes meeting new people very difficult – where do you start? Ideally everyone would have a list of five facts about themselves that sum them up, which they could simply reel off to each other when they meet. Then both sides could decide whether to explore the conversation further with some valid information to base that decision on. Bish bash bosh, job done.
Also, l’ve learned that conventionally one should not focus on oneself in conversation. Ask questions about the other person, even if you don’t give a toss what the answer is, purely to say “I’m interested in you and want to establish a connection.” This seems daft. Why not jump straight to the important and interesting stuff? [Sorry, got sidetracked there. What I was going to say is:] I tend to show understanding and empathy towards what someone’s told me by relating a similar situation from my life. To me, that’s saying I really know what the other person is talking about and here’s some proof. To other people it can come across as one-upmanship, or being too focused on myself – grabbing the conversation when the other person is trying to focus on themself. So I have to consciously make the effort to explain why I’m saying what I’m saying and relate it back to the other person in excruciating detail. And that takes mental energy. I’m not being self-centred, quite the opposite, l’m trying very hard to relate to what the other person is telling me, and to show how much I relate. It’s so much easier conversing with other autistic people. Rachel and I very rarely have these problems.
Networking is one of my worst nightmares. Unless there’s a well-defined, specific, obvious common interest (e.g. meeting other writers) I have absolutely no idea where to start. I’m completely incapable of walking up to someone, introducing myself, and engaging the other person in conversation, for so many reasons. I’m always the one standing by the refreshments, obsessively adjusting my cup of tea or picking at the snacks. These days, since I took up smoking (vaping) again, I’m more likely to be found outside the venue, trying to suppress my nervous panic. Actually, that’s often a good thing – it’s somehow easier to make inconsequential conversation with a fellow transgressor.
Writing about all this stuff is making me quite jittery, so I’m going to stop for today. One final thought though, handwriting is more like spoken communication than written communication in some ways. Yes, it’s possible to stop and think about what I’m going to write next without the reader being subjected to a long awkward silence, but without extensive crossing out and making a mess of the page (which I hate) it’s impossible to edit as I write. This is alien to the way I express myself – by writing drafts, notes and lists to work out what I want to say and how to say it, then expanding on those to turn it into effective communication. And re-reading and editing, of course. On the other hand, it is really interesting to read back through what I’ve written. Even though the unpolished style often jars, the access I get to my uncensored thoughts is fascinating and revealing. The notebook I wrote in before attempting suicide in 2016 is full of insights I wouldn’t have got from an edited and polished typed journal, for example.
Edited and extended version of journal entry written on August 21, 2020
Content warning: suicidality
Given … pressure to ‘fit in’ with neurotypical social communication, individuals with autism … may ‘camouflage’ difficulties during social situations by either hiding behaviour that might be viewed as socially unacceptable or artificially ‘performing’ social behaviour deemed to be more neurotypical – they Pretend to be Normal. … Autobiographical descriptions and clinician observations often suggest that camouflaging unfortunately comes at a cost: it often requires substantial cognitive effort, can be exhausting and may lead to increased stress responses, meltdown due to social overload, anxiety and depression, and even a negative impact on the development of one’s identity.1
I first became aware of my ability to mask when I had a breakdown in 2015/16. I was severely depressed for many months before finally becoming actively suicidal in February 2016. But as far as most people knew, I was fine. I think there were only a few close friends who knew how bad I was. H sussed I was becoming severely depressed before I told her, possibly even before I realised. I’d told V and R most of what was going on, and J knew some of it. Apart from them, everyone – including my family – believed I was OK, because I was so good at masking my true feelings. I could be sociable, have a laugh, brush off problems, and generally function well to all appearances.
To some extent I was even masking my true feelings from myself – I remember the first 2-3 weeks in the psychiatric unit, dossing around, having a good time, and feeling like a total fraud for being there. The nurses and HCAs could see through me though – they knew that in fact I was severely and dangerously depressed, even though I didn’t. How that’s possible when I was still actively trying to come up with ways to complete suicide, I don’t know. That, and the events that led up to my admission, somehow didn’t tell me how bad I was. I remember telling staff on many occasions that I felt like a fraud. I was functioning OK – talking to people, finding ways to keep myself occupied, having visitors, generally keeping a firm lid on my emotions. My brain felt like it was working fine – how could I be truly depressed? The mask was well and truly in place.
There were several aspects of and incidents in my childhood which taught me how to mask:
total taboo in my family against showing emotions of any kind
negative effects of losing my temper or saying what I really thought
feeling like an outsider all the time – no TV, read lots of books, never around on weekends or holidays
didn’t understand how to talk to or be friends with people, especially peers
being more intelligent than my peers and resented by them because of that
being told by a classmate (aged 6) that her mum didn’t like me because I was too loud – I started speaking quietly and was often not heard after that
a desperate desire to fit in and be like other people, not a despised outsider
[I’m finding this very hard to write about. I’m not sure if that’s because I’m exhausted, or if there’s still a significant amount of self-masking going on. Maybe I’m subconsciously trying to maintain my self-masking, maybe the masks (I have several) have become so much a part of me that ripping them off would damage me.]
My reluctance to accept that I’m autistic was definitely due to an internal mask. I refused to see (or was incapable of seeing) that the way I think and behave is different from ‘normal’ people in a way that indicates autism, probably because I’d spent most of my life trying to be the same as them. I had to some extent internalised much of the neurotypical behaviour and thinking I was deliberately exhibiting, and suppressed what I had inferred was unacceptable behaviour and thinking. I had done that for long enough I believed it was part of me, rather than a layer of not-me pasted on to fool the rest of the world.
I don’t know what triggered the removal of that mask. Perhaps the evidence of its falsity had accumulated to the point where I couldn’t accept it any more. For the last few years I’ve been (knowingly) surrounded by autistic people. Rachel talks about autism a lot (it’s one of her special interests). She hadn’t been long diagnosed when I started meeting up with her for occasional drinks in 2015, and I was fascinated by her description of autism as experienced by girls and women – very different to the ‘classic male’ presentation. I quickly realised that my daughter and my mother are autistic, and helped my daughter get a formal diagnosis a couple of years after that, but it took a further two years for me to recognise my own autism.
So anyway, it turns out many of Rachel’s friends are also autistic… and I always felt more comfortable with them than with neurotypical people. Added to that, Rachel occasionally pointed out my own autistic behaviours – I don’t mask much when I’m alone with her, so they were probably easy to spot. And as I became less depressed I became more self-aware. Even though I’m relatively inflexible in my thoughts and opinions, I will change my mind given sufficient evidence to show I’m wrong. I suppose that evidence built up until it reached a tipping point.
Now, I’m resentful that I’ve spent decades hiding my true self simply to avoid being seen as different. I always thought I rejoiced in my differences, but it turns out that I was kidding myself. By far outweighing that resentment though, is the hope that my new-found self-awareness will give me what I need to understand and address many of the causes of my recurrent depression, and prevent it from coming back.
1. Lei et al, 2017, ‘Quantifying and exploring camouflaging in men and women with autism’, Autism, 21(6), pp690–702.