Let’s play spot the Aspie

Disclaimer: To the best of my knowledge none of the people discussed in the article described are autistic or neurodiverse. That said their impressive attention to detail, commitment to research and obsessiveness are commonly found in autistic people. Also trains!

My husband said I *had* to read the Guardian’s article ā€˜Iā€™m proud to be called a nerd!ā€™ The pop and rock greats who love model railways as I’m currently building a model railway myself. It’s a dual gauge OO and OO9 steampunk canalside shunting layout with some complicated pointwork and a lot of inset track. It’s still at the wiring up stage so there isn’t anything pretty to show for it yet. He bought me track for my birthday and pewter figures for Valentine’s day.

Anyway it’s an awesome article, although my husband was surprised by how much I already knew about famous modellers.

DH: “I didn’t know Jools Holland modelled.”

Me: “Oh yes, he has a lovely model in his loft, I’ve seen it.”

DH: “And Eddie Izzard?”

Me: “Oh yes, that’s a wartime winter one, I love that one.”

DH: “How do you know all this?”

Me: “I’m autistic. Also you regularly buy me Railway Modeller at Christmas. Also YouTube.”

Finally, I simply must add another train song that was sadly overlooked in the article. An a-ha track about a man travelling home to a significant other via freight train (presumably hitchhiking). There’s a rhythm running all the way through that sounds just like a train passing over tracks.

Dating

Now you might assume that given that I’m married that dating obviously wasn’t a problem for me.

You would be wrong.

Autistics have three trajectories for relationships:

  • Perpetual singledom – that would be like my (great-) Auntie Margaret and my (great-) Uncle Jim. Brother and sister who never married and lived all their lives in their mother’s (my great-grandmother’s) house.
  • Marry a fellow autist. These folks are the happiest and almost no one talks about them. I have no experience of dating a fellow autie so I have nothing to add.
  • Marry a non-autist. This is where those websites (which I won’t link to) that tell you how awful aspies are and how you must “run away” because they’re so evil come from. Some neurotypical woman accidentally married an autistic man and she’s very upset that he doesn’t understand her passive-aggressive tactics.

Of course, autistic women exist too and some of us marry non-autist husbands (like I did).

Anecdotally such women do not marry “normal” neurotypicals. Oh no, we end up with “extreme neurotypicals” with an extra dose of empathy and patience. And being in an age-gap relationship is definitely a thing. Basically, neurotypical men our own age can tell that something is “off” and don’t want to get involved.

So we find ourselves an ultra-patient empath who is significantly older than us and we’re good to go, right?

Yeah, no!

You see as an autistic female there are two rules to dating: “wait for your spouse to ask you out” and “say yes.”

“Wait for your spouse to ask you out”

Leaving aside the thorny issue of whether you even want to get married, because being aromantic and/or asexual is an actual thing and really common in the autistic community, how do you work out who to date?

Most autistics are so used to struggling in interpersonal relationships (even the platonic kind), that we usually have extremely low self-esteem. Where a neurotypical woman has a laundry list of must haves: height, biceps, great teeth, full head of hair, impressive job, first class degree from a fancy alma mater, skiing ability, wealthy family, etc., etc. your autistic woman hopes for “will tolerate me” and anything else is a bonus.

Autistic women are in abusive relationships far more commonly than neurotypical women and we have staggeringly high rates of rape and sexual violence committed against us, because when you set the bar low enough that even a rapist couldn’t trip over it, well the odds aren’t in your favour.

Luckily I’ve so far avoided being raped. But I have an impressive list of dodgy nasty-pieces-of-work in my romantic history. And you can count all the men I ever dated who I didn’t marry on one hand – yes just the 5 of them.

There was the young man who bragged about committing acts of criminal damage and vandalism and carried around other people’s stolen property as trophies. There was the young man I dated for several weeks until I discovered that he already had a girlfriend he had forgotten to mention. There was the guy who repeatedly stood me up. And then there was the otherwise-nice boyfriend who dumped me because he “couldn’t cope” with my (mild) depression any more (ironically he is now a non-executive director for a well-known mental health charity). None of this boosts your self-esteem or convinces you that people will bother to be there for you when your life is anything other than perfect.

“Say yes”

If you thought the first rule was hard enough, wait until you’ve heard about the second.

When I first started dating my husband I was a little wary. What if he had a wife and three children stashed away that he’d forgotten about? What if he was a catfish and was going to steal my life savings? What if he was actually a criminal? What if he dumped me because I had my monthly period and it made me moody? You know, all the usual concerns…

But it turned out my sneaky suspicion that he was actually a thoroughly decent bloke turned out to be true. It was such a relief. He showed up when he said he would. Didn’t snarl his lip up at me for being autistic and doing something wrong. Didn’t ridicule me in front of his friends. It must be what neurotypical women experience when they date normal, not abusive, men.

We were in his car going out somewhere for a day out, on an actual date, and I said, “You know I really like dating you, I wish you’d asked me out months ago.”

And he turned and looked at me (he was driving so it wasn’t for long) and he said, “But Kate I did ask you out. I asked you out twice and you turned me down.”

You see, my husband was my best friend and we hung out all the time at work. So when my husband asked me if I wanted to go London for the day to see an exhibition, I said no, because London stinks and it’s too busy and too noisy and it usually triggers migraines and panic attacks and meltdowns and it’s just not worth it. I hate London. Do I ever want to go London? No. Ask an autistic person a question, expect a literal answer. Besides, I didn’t think he was interested in me that way. Why would he be? It never occurred to me that the implicit, unexpressed question was “Would you like to go on a date with me?” and if yes the correct answer was actually “London sucks, but I really like Hay-on-Wye – why don’t we go there for the day instead?”

Anyway luckily he persisted. Because I just don’t “get” non-literal conversations like the sort people have to express interest in each other.

By the way, you can’t do this anymore – keep asking out a colleague and HR will be wanting to have words with you about sexual harassment – so please don’t try this at home and think, “well it was OK for Kate.” Kate is autistic and thereby a bit “dense” when it comes to love-life stuff, statistically if you’re reading this and you are autistic, that person you’ve set your focus on at work/club/your street/etc. is not autistic and therefore not “dense” and will get upset if you start stalking them and you won’t leave them alone after they’ve politely rejected you.

Systematizing

So I’m sat with my daughter during her initial assessment for autism and she doesn’t want to be there. She doesn’t like meeting new people, doesn’t like not knowing what they’re going to ask her, knowing what she’s supposed to say. Typical autistic nightmare stuff.

Even post-pandemic they’re doing all this via Skype. My daughter says she’ll only do it if she can bring a book to look at to calm down during the assessment. It’s a Marvel comic omnibus, because the Marvel Cinematic Universe is one of her special interests. I figure this will be just fine with the autism assessor.

Of course it is. We talk about MCU a lot – no that’s a lie. The psychologist asks if she has any special interests and I hold the comic book to show him. (I say very little about the MCU.) My daughter then cheers up immensely talking about the films and the various TV series. I mention my daughter’s ultimate list. She has compiled a mega list of every film (including the Sony Spiderman films, I could explain, but spoilers…), every episode of every spin-off TV series (including animations and the multiverse). She has then arranged them all in chronological order along with timings for everything. So that she can she watch it all in a marathon session. She was going to do this binge-watch during half-term but there literally were not enough hours, so she’s going to do it after her GCSE exams.

This list runs to pages and pages of information. I asked her if somebody else hadn’t done it already and posted it on the internet. No. Nobody has done the entire MCU multiverse with timings – some people have done the films, or the TV shows, but no one has an ultimate list except my daughter.

“That must have taken you hours,” says the psychologist. My daughter shrugs. It was nothing.

***

I volunteer at the local village library. We have reading scheme books – you know, the ones parents borrow to help teach their children to read. Every book publisher has a different reading scheme and none of them match. One of the senior volunteers tells me to “organise them”. Do not tell an autistic person to organise something if you don’t really want it organised. She assumes I’m going to put the books into groups by publisher. I start doing this, but then I realise that the newer ones have “Book Bands” that are consistent. I put the new books in order. Then I decide I need to work out how the old books fit into the new scheme. I make one of the other volunteers cry because she doesn’t understand the system. Parents come in and are delighted, because they know what their kids are reading at school and can find books at the right level now. The senior volunteers order coloured stickers for the spines that match the book band colour. Oh joy! Now the other volunteers can easily reshelve books without crying and my new system makes sense to everyone (as long as you’re not colour blind – hey, I didn’t invent the system).

***

Austistic brains like to organise things. That’s why I work clockwise round the plate eating things in order, still, even now – hamburger first then chips; roast beef, Yorkshire pudding, roast potatoes, carrots, peas. None of this mix stuff up together nonsense. Orderly, logically, systematically, autistically. And if you have a problem with that then you need to get out more.

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.