Attention to detail

OK I’ve had enough of talking about the negatives of having autistic traits, so I thought I’d start sharing some positives.

I have awesome attention to detail. Something that was picked up on by my art teacher during sketching classes, my Latin teacher when covering the finer points of grammar, and my physics teachers when running experiments and practising calculations.

There aren’t many jobs where people rate “attention to detail” over “social skills” – the bane of the autistic job interviewee’s life – but book editing is one.

I don’t like the labels “high functioning” versus “low functioning” when applied to autistic people; it minimises the struggles of one while ignoring the abilities of the other. You are allowed, however, to call me a high-functioning agoraphobic. That is a label I accept. I don’t know what on earth possessed me to think that I should try school teaching – it was before I realised just how many autistic traits I had and I was still believing that all my problems were all my own fault and I simply wasn’t trying hard enough and I just needed to pull myself together and be like everyone else. Going and working in huge secondary schools everyday with grouchy teenagers was a dumb idea. Fortunately I came to my senses and realised that needing a daily hit of nicotine to cope with my sky-rocketing anxiety was a sign that it was time for me to leave.

But, left to my own devices I would never leave the house. It’s safe here. And if I avoid the internet and no one burgles my house, no one can ever hurt me. Outside these four walls it’s a different matter. I do leave on my own sometimes: I go to the library and my ladies Bible study group. But that’s it. My husband makes me go out fairly regularly, but going somewhere with him is better than going alone.

There aren’t many employers that want to hire a social recluse for whom leaving the house may trigger a panic attack. There aren’t many decent jobs that (pre-pandemic) you can do from home. But having attention to detail and freaking out over meeting people are ideal traits for a stay-at-home freelance proofreader.

The only downside is that some people hire proofreaders and forget that we’re human and therefore imperfect and fallible. I’ve had some horrendously jerkish clients in my time. Fortunately I’ve been doing this long enough and am good enough at it that I don’t need to keep nasty clients around. But I always worry that a client may only be a good client because I’m dealing with the only nice employee and one day I’ll have to deal with someone else who treats me like dirt for not being perfect. (I’m prone enough to beating myself up for not being perfect, I don’t need other people to kick me when I’m already down – that’s just cruel.)

It’s 3.30 am and I can’t sleep…

… and that’s actually not uncommon for autistics.

As a teenager I would get up in the middle of the night, having been unable to sleep to find a full-on insomniac party taking place in the kitchen. And by party I don’t mean a literal one obviously (did you not get the memo), I mean the rest of my family had similarly been unable to sleep.

I can’t sleep right now because I’m stuck in a rumination spiral. I hate when my brain does this to me. There is no answer to my problem, otherwise I wouldn’t ruminate; instead it would have a solution, I would think of it, be happy and go back to sleep. It’s all tied into my perseveration. I’m like a train, a literal train (I know that’s a classic autistic stereotype but stay with me). Which means I can’t jump tracks. Neurotypicals are like off-road cars and I’m a Class 58 pulling 100 coal wagons. I’m not going anywhere but straight on.

The results of my daughter’s initial autism assessment came through. It’s really clear cut. There’s not even a hint that’s it’s questionable. Even the bits that are ‘mild’ are above the clinically significant threshold, everything else is ‘high’. So she’s having a full diagnostic assessment as soon as possible – which will probably be this summer straight after her GCSEs.

I had to bite my tongue all the way through the assessment, the psychologist asked a tonne of questions. So many times the things that didn’t apply to my daughter applied to me. I’m so obviously autistic, why didn’t anyone tell me sooner? How have people been allowed to tell me that I “wasn’t trying hard enough” to act like a “normal person”? Why did teachers discipline me for refusing to make eye contact? Why did teachers discipline me for stimming? How is it cruel to tie left-handed children’s hands behind their backs so they have to use their right hands, but it’s OK for you to expect me to rewire my brain to be less autistic? I’ve been brain-shamed my whole blinking life.

Anyway the damage that society inflicted on me is now being inflicted on my daughter with obvious results. I wish I could say she’s the only one – but she’s not.

Self-disclosure

When I was a child I used to laugh much more.

Then my mother pointed out that much of the time my laugh sounded incredibly fake and was actually cringey (well it was the 80s so those weren’t her exact words as cringey wasn’t an expression people used much, but you get my meaning).

So I stopped laughing and I stopped smiling.

Unless I couldn’t help it.

I only laughed voiced laughter and stopped trying to do unvoiced laughter as I couldn’t pull it off anyway. The cool thing is, though, when I laugh (naturally) now it’s adorable – as my husband will attest.

I’ve spent 45 years trying my hardest to be neurotypical (as if rewiring my brain in that way was even possible), but it’s never worked, not really, not for any length of time. I can fake it, but I’ll never make it. And people don’t like being lied to. They prefer authenticity. So when the mask slips and people glimpse the autism beneath they don’t know what to make of it. Is a meltdown because I work for a company with an open-plan office and flickering fluorescent strip-lighting that expects 100-hour weeks and cancelled holidays actually caused by my being an entitled spoiled brat with anger-management issues? Is my inability to understand other people’s point of view narcissism? Are my decades of self-harming huge red flags because I’m an attention-seeker or, God-forbid, a ‘borderline’? (Borderline personality disorder is caused by years of childhood abuse and trauma, such people deserve your compassion by the way.) Is my honesty a sign of rudeness? Is my difficulty with changes to my routine a sign of being a drama queen? Am I lazy? Am I unlikeable? Am I unloveable?

Whether to disclose is a personal decision. But people are going to be able tell that something is ‘off’ anyway and they might distance themselves and avoid me and reject me. I just figure that they might as well reject me for the right reason – being ableist p****s rather than the wrong reason(s), which was caused by assuming that I’m neurotypical just like them. So now I’ll happily tell anyone and everyone that I’m seeking an autism diagnosis, because the alternative is twisting myself into a pretzel in an attempt to be acceptable to them only to be eventually rejected when my autism becomes obvious. Some people only want want perfect friends (and if you disbelieve me you need to spend more time reading internet listicles about axing ‘toxic’ people from your life), such people end up alone. For a reason.*

There are people who accept auties unconditionally (ongoing anecdata from my own life suggest such people are neurodivergent themselves), everyone else just wants to know they’re not being duped.


* This is seriously off-topic, but I’ve seen how this plays out in my own family. My mother thinks her own mother displayed autistic traits. For my maternal grandmother’s funeral the church was packed. My father was adopted (which if I was telling any other story might be deemed irrelevant, but turns out to be a relief in this case). My adoptive grandmother displayed an awful lot of narcissistic traits. By the time of her funeral she had no friends left and had succeeded in alienating most of her family.

Bullying, telling the truth and birds of a feather

I was going to just blog about bullying, but then I realised that I would inevitably touch on a couple of other areas so this is a three part blog post.

Bullying

While anyone can be on the receiving end of bullying behaviour, studies show that autistic students are 63% more likely to be bullied than their neurotypical peers. So given that I’m currently awaiting an autism assessment it won’t come as a surprise if I tell you that I have been bullied in the past. I was bullied a little when I was at secondary school and (when I actually stop and think about it) even university, but the worst bullying was at primary school.

Luckily my bully wasn’t in my class, unluckily she used to make a point of coming to find me at breaks and lunchtime to tell me how much my continuing existence offended her. I cannot fathom why a girl I knew nothing about beyond her name, and presumably her knowledge of me was also similarly minimal (what can I say, being “popular” has never been a problem I have experienced), would become so obsessed with telling me she hated my guts. Presumably, my autistic traits made her uncomfortable and she couldn’t help but act on it – rather like Impulse but less likely to lead to a romantic relationship.

Eventually we moved to different secondary schools and I never saw her again so she never had a chance to continue bullying me.

The funny thing is my bully was the prettiest girl in school, in fact while thinking about all this I decided to look her up on Facebook (and no, I don’t feel in the slightest bit stalkerish for doing so, the girl spent the entire last of primary fixated on me). She still goes by her maiden name and lives locally to our old school so she was easy to find. She has a daughter now that is a little younger than we were when she bullied me. Her daughter is the spitting image of her, an adorable-looking blonde Shirley Temple lookalike. And in the posts that are visible on Facebook she doesn’t come across as an internet troll, just a normal, everyday person sharing kind messages with her friends.

Anyway, who knows what was happening in her life at that time, maybe she was having an awful time at home and just wanted to lash out at someone convenient. And what with my obvious lonerish tendencies I was an obvious target.

Telling the truth

Of course, while I have no idea what I did to offend my pretty primary school bully, autistic people are really good at making themselves targets accidentally.

My daughter had her initial screening assessment for autism this week (you won’t be surprised to learn that she passed #SoProud). Of course one of the problems that she discussed with the psychologist was making friends. But she mentioned that she hadn’t helped herself. Autistic people love the truth, like *really* love the truth, as in would rather beat themselves about the head than tell a lie. And my daughter would tell the teachers at her primary school all the naughty things her classmates had done. She was behaving in a manner that Tony Attwood likens to Italian drivers. This is not how you make friends with neurotypical people. She now knows that this will get you labelled a snitch and a tattle-tale and then people won’t like you and bully you.

Birds of a feather

I don’t want to make out that my life has been one long bullython. I survived school relatively unscathed by bullying. Even in primary school I was mostly left alone. The other girls wouldn’t invite me to their parties and hangouts, but they didn’t actively pick on me. But I wasn’t friendless. My best friend was a boy called Andrew. I don’t want to diagnose him, but he has always had a brain the size of a planet and even when I first met him, when I had just turned 7 and he was still 6, he was a stereotypical “little professor”. We both have some fairly obvious autistic traits. We were so chummy, our classmates used to joke that we would marry each other (let’s just say I’m not his “type” and leave it there shall we). So we were probably protected from being picked on too much by the other children as we clearly had at least one friend in each other.

My daughter has a large friendship group so for a while when I first realised I was probably autistic I didn’t believe that she could be too. But it turns out her friendship group is very neurodivergent. Her friendship group includes multiple friends who are diagnosed with autism, ADHD, dyslexia and dyspraxia.

I can find no evidence that anyone has done a study on this but from my personal experience – it looks like many of my friends and acquaintances are not particularly neurotypical – we’re friends because we think in a similar way and have similar (special) interests.

I need to go and have a lie down now…

This is an expression I’ve heard a lot in recent years. I don’t know if allistics think it’s a figurative expression and that those who say it are exaggerating for effect, but I use it literally. When I come home from some social event I lie down for a good hour, when my relatives or my in-laws go home after coming to visit I lie down for a good hour, when I worked as a trainee teacher in secondary schools I came home and had a lie down in a dark room for at least an hour. Every. Single. Day.

I used to think I must be lazy. Having to go and have a lie down every afternoon after doing the school run before I could summon the energy to face cooking the dinner. But actually I was just suffering from autistic fatigue.

When I was younger I used to just walk out of social events when I couldn’t cope anymore. I was notorious for doing what I’ve seen described elsewhere as a “ninja fade”. But people don’t take kindly to being ninja faded and react badly and shout at you so I learned to swallow my discomfort and pretend to be fine (only to crumble the moment I got home).

Now that I’m a self-employed/remotely part-time employed adult, things are much better than they used to be. If I have a day that I know is going to be massively demanding in terms of masking and social interaction and sensory overload I can rearrange my schedule to minimise the interactions that I have to cope with the following day. And knowing that I have high-levels of autistic traits means that I am rapidly losing any sense of guilt for prioritising my health in this way. And patience with those who think less of me for doing do.

Where are all the autistic academics? Part 2

In summary: No one knows!

You have high-levels of self-disclosure of disability (including autism) among students both under- and post-graduate. And then the numbers of autists fall off the cliff when you look at academics. Did they figure they didn’t fit in and leave? Did they get pushed out? Did universities object to their lack of interpersonal skills, small talk and interview techniques, and refuse to hire them? The statistic that 60% of autistic students fail to complete their degrees won’t help. A fair number of the oldest who somehow succeeded against the odds and actually got sufficient numbers of degrees to even qualify as an academic probably don’t even realise they are autistic. When I was a child, autistics were male and like Dustin Hoffman’s Rain Man, and despite Hans Asperger infamously doing his work in Nazi Germany, only American schoolboys were being diagnosed with Asperger’s syndrome.

And then there’s the Sheldon Cooper problem. As in every physicist is basically an aspie and a genius. Or sometimes: every aspie is a physicist and a genius. (Which winds up all the autists working in the humanities or mental health or anthropology or whatever else is their special interest. ) Actually, I suspect that very few physicists are autistic. Simon Baron-Cohen did a study when developing his famous AQ-50 that found that the average AQ-50 score of undergraduate physics students at Cambridge University was 19.6. While the AQ-50 is not diagnostic, if you score as low as 19.6 you can effectively rule out autism. You are not autistic. Neither of my children scored as low as 19. The threshold for “you may wish to pursue a diagnosis” is 26, which both my children exceed comfortably – one wants to study classics, the other psychology. Anyway, I’ve digressed massively, but the point is by assuming that high-functioning autists are geniuses, there is an expectation that universities are a natural environment for them all and they don’t need supports – which is ludicrous when you look at the dropped-out/kicked-out rate.

And all this infuriated me recently when I was deciding what Exclusion, Diversity and Inclusion training to attend for some CPD next month and there was no “supporting autistic students” option. How can this be?

Where are all the autistic academics?

I had an email this morning about my HESA details. In the UK the Higher Education Statistics Agency collect details from all the universities. I’d filled in my form before about my sexual orientation, my religious beliefs, the colour of my skin, yadda, yadda. But I’d gotten it wrong. You see I don’t see myself as an academic so I ticked the wrong box. Apparently that’s not allowed, the staff at the OU reset the electronic form for me and I had to redo it.

So I did it again.

I’ve been ticking the “yes I consider myself to have a disability” box on official forms for a couple of years having come to the realisation that my mental health is going to be “like this” for the rest of my life and I’m always going to be prone to having relapses – which is basically the definition of disability due to mental health issues. This time I ticked the social and communication issues box too. I’m still a bit conflicted about it – what if I’m imagining all this and making a fuss about nothing. But today I also paid the first bill for my daughter’s private autism assessment and I think, well her clinical psychologists think this is serious enough that she should go and be assessed, and she’s arguably less affected than I am and I’ve been stuck on the NHS waiting list for a year with probably another three to go.

(And can I just digress and say how much it winds me up when people say that those who are “high-functioning” don’t have “real problems” – my daughter has actual NHS clinical psychologists (do you know how ill you have to be to see these people) who think her problem isn’t bad parenting, or war, or abuse, but being a neurodivergent female in a world that refuses to accept that as the norm and OK.)

Anyway, so being in the limbo of waiting for a diagnosis I ticked the “I identify as autistic” box.

And then I headed off to the HESA website to see how many others ticked the box.

175! You could take a standard lecture theatre and put every single autistic-spectrum “academic” in the country in there and still have seats free. There are more blind academics. There are more deaf academics.

Which probably goes some way to explaining why some academic staff are able to dismiss autistic students as being a “nuisance” with impunity.

Living stones and aliens – or – being a Christian with autistic traits

I am a Christian. I grew up in a non-religious home but became a Christian at 25-26. I don’t recall a particular date that I can look back on and say “Yes, that’s the day of my conversion because I said the sinner’s prayer/asked Jesus into my heart/was baptised in the Holy Spirit”. It all rather crept up on me. On my 25th birthday I was a non-believer, by my 27th birthday I was a believer.

Central to my conversion was my friendship with my husband (a Christian since his university days) and C.S. Lewis. I adore the way Lewis’s mind worked – despite holding positions in the English departments of both Oxford and Cambridge University, Lewis’s arguments for the faith (his apologetics) were grounded in logic and reason and rationality in a way that appealed to me. It all made sense once Lewis explained it to me. I guess it always did, as I child I loved his fantasy world of Narnia (if I’m honest I still do).

Of course, it wouldn’t be much of a faith if all I believed in were the works of C.S. Lewis. The Bible itself speaks to me in a way that I know is lost on some of my non-autistic fellow Christians. The Bible is clear that Christians are sojourners and foreigners and aliens to this world, because our real home is with God. As someone who immersed herself in Lewis’ Narnia and other fantasy worlds entirely because the world I live in does not feel like my home or where I belong, there’s a comfort in a holy book that says precisely that.

Truthfully though even church isn’t an idyllic haven for me. The core part of me struggles in social situations, even when those are at church.

I go to a lovely friendly church where sound doctrine is preached and people pray for each other continually and are there to support each other with whatever physical needs they may have. It really is as close to perfect as is Earthly possible. And yet, despite having been a regular attender for 10 years, before the Covid-pandemic I still didn’t feel I truly fitted in.

My social anxiety means that I am afraid to go up to people and talk to them, I guess they’re not used to talking to me, much of the time I feel like a spare part, like I’m invisible. I watch all the other women greet each other with hugs. In all the years I’ve been there none of them as ever hugged me. On one level, I don’t mind, I don’t particularly want to be hugged. It’s just that the difference in the way I am treated and the way the other women treat each other is so jarringly obvious to me. I’ve wondered all my life what was wrong with me. I used to dread the end of church, when my husband would refuse to leave and I just wanted to run away and hide from the reality that I was different from everyone else. Ironically, the one blessing to Covid is no one hugs at church anymore and I don’t get confronted with my own weirdness so regularly. The entire congregation has become that little bit more like me. Although I don’t know that it’s been healthy for them, mentally.

I have to fight myself to go to church sometimes. The Bible talks about Christians being living stones in the temple of God or being body parts of the body of Christ. The idea being that we’re all important. It’s no good me saying, “well I’m socially awkward and no one hugs me, so no one would miss me if I stopped going to church,” that would be like the thyroid claiming that because it’s not pretty or visible on the outside of the body that it’s not useful. However, I have a suspicion that modern evangelical Christianity isn’t doing me a lot of favours here, with its focuses on evangelism and outreach and “invite your friends to church”. What friends? The older I get, the more my friendship circles are predominately Christian – who are at least regularly told that they have to be nice to social outcasts and not ostracise them further. The idea that there exists a vast pool of people who might be converted to Christianity if only I did my duty and shared the gospel with them is farcical. To all intents and purposes I’m agoraphobic. On the two days a week I leave my house without a family member to accompany me, I don’t even leave the village I live in.

Driving

One of the enormous benefits of being on the waiting list for an autism assessment is that everyone has stopped nagging me about driving.

I learnt to drive at 17 in a little manual-gearbox Vauxhall Nova – a fairly standard experience for British teenagers. What wasn’t typical was how many lessons I needed to learn. I have forgotten the actual number but believe it was upwards of 40. Everyone else* only needed 20ish lessons.

My inability to learn how to drive was the subject of much discussion among my classmates and my parents’ friends. Obviously I must have had a bad driving instructor because, and I quote, “That’s not right, someone your age shouldn’t take that long.”

Now I don’t know if he was a bad or good instructor, but he said something funny (as in peculiar) that I have been reminded of recently. I spent my teenage years living in the Cambridgeshire Fens and learnt to drive there. My driving instructor taught people from all over the area, including Cambridge University Dons. My driving instructor explained that I reminded him very much of some of them. He had noticed that many of these Dons, despite being very good academically, for whatever reason the “normal” life-skills that came so easily to people less academically able alluded them and they found that learning to drive was immensely difficult. My driving instructor told me of one particular Don that eventually gave up driving altogether and continued to cycle everywhere – however this was not always successful as his absentmindness, head on “another planet” and lack of executive functioning meant that he sometimes forgot whether he had cycled or walked to work and would leave his bike attached to some random Cambridge lamppost until he got home and found his bike missing.

Eventually I took my driving test and passed the test – first time I might add. But I rarely feel comfortable driving. I find it all hugely anxiety provoking. And generally I only drive on roads close to my home that I know well. And preferably quiet country lanes rather than busy dual carriage-ways and roundabouts and never motorways.

* i.e. neurotypicals …

Work

Autistic people have a shockingly low rate of employment. Recent UK statistics from no less a source than the British government report that only 22% of British autistics have any kind of employment. Other research suggests that as few as 16% of autistic people are in full-time employment – and I’m not one of them.

In fact, until my interview with the Open University last summer (where I disclosed having ongoing mental health issues and that I am currently awaiting an autism assessment), I hadn’t been offered a job as a consequence of an interview since 1997.

1997!!!!!

Thank God I have the world’s nicest husband who doesn’t mind supporting me when I’m having a rough month financially. Thank God I can earn money from freelancing so that people who don’t want to be around me face-to-face can stomach hiring me at a distance.

I jest. But there’s no way to hide how demoralising it is to be continually rejected for paid employment for over 20 years.

I try. I really try. I shower, I wear clean clothes, I smile, I attempt to copy neurotypical eye contact without looking like a creepy serial killer or a liar (I have no idea if I pull it off). Of course the anxiety gives me headaches, I forget the answer to questions I know, I flail and I probably ‘mask’ so hard I come off as inauthentic. I also (I think completely understandably) lack confidence.