CONTENT WARNING: Contains descriptions of adverse mental health and suicide. If you experiencing any difficulties please seek help from your nearest mental health service provider. Also contains graphic images of inflammatory throat conditions some may find disturbing.
PERSONAL NOTE: This is about as personally exposed as I’ve ever allowed myself to be in public. Friends and family members be warned, this might upset you.
What the fuck is autism? I’m diagnosed autistic and I’m not even sure I know.
I mean, it’s classed as a ‘developmental disorder’ but I’ve met autistic people who have been a damn sight more orderly, at their worst, than some so-called ‘neurotypicals’ (people with ‘normal’ brain function – again, whatever that means!) at their best.
So is it a disorder? I don’t know.
It is probably most associated with a struggle with social or communication skills.
Well I literally write, communicate for – well not exactly ‘a living’ but as what could be construed of as my ‘job’.
I have written all of my life. Words became something that fascinated me at a very young age and I haven’t stopped since. I have clearer communication, again, than many ‘neurotypical’ people I know.
At the same time I can point to several experiences where words fail me. I hate, for example, being put on-the-spot to answer a question quickly where the question requires thought as opposed rote memorisation or quick calculation.
Ask me ten-times-two I’ll answer quick with “20!”
Ask me how to define an ecological niche and, thanks to Hutchinson and biology, I would describe it as an “N-dimensional hypervolume.”
Ask me my favourite musical piece of the last twenty years and you’d better be prepared for a long pause before a long answer, including more than one musical piece.
Ask me to describe, in words, how two connecting furniture pieces fit together, on the spot, and I’d struggle! I’d rather just stick ‘em together and show you how it’s done. In fact, ask me to do it and then describe how I did it and I’d also struggle.
So yeah, I guess you could argue I struggle with communication, especially face-to-face.
As for social skills? Frankly I don’t think most autistic people have a problem socialising. I think most neurotypicals have a problem socialising with autistic people.
Neurotypicals, you’re like fucking excitable dogs, constantly jumping up, barking in my face, humping my leg and all I want to do is sit quietly in the corner with a cup of tea and make a witty quip once every twenty minutes to remind people I still exist.
Sit! Good neurotypical.
Now shut the fuck up for five years so I can get my head straight.
It is believed to be caused by a heavily predominant genetic component mixed with a little environmental danger. What is certain, as proven by multiple studies and meta-studies (studies of multiple studies around the same subject) and, as far as I know, meta-meta-studies (studies of the studies of multiple studies…Yeah they really got deep on this one) is vaccinations do not cause autism.
As far as I am aware, symptomatically, autism begins showing itself at around the age the vaccines are given which got some people to imply a cause when actually it was a coincidence. Then a doctor with a heavy stake in a split, two-jab version of the standard, one-jab MMR vaccine made a spurious analysis of a few case studies (not even a proper double-blind scientific study) and got a whole crusade going. Vaccines have never been demonstrated to cause autism.
Even if you believe they do, even if my simple explanation can’t convince you, here’s the thing. Do you know what kills kids? Measles, rubella, mumps, polio, meningitis, vaccine preventable diseases – they have a proven efficacy, they are effective at killing kids.
Do you know what doesn’t kill kids? Autism.
I’d rather have autistic offspring alive than a kid dead of a preventable disease. So vaccinate your fucking kids.
How does autism manifest itself, then? Well in lots of ways (see Figure 1 above), stereotyped behaviours, repetitive movements known as ‘stimming’ or, effectively, self-stimulation. It’s a means of calming oneself.
Compulsive behaviours, like ordering things or stacking things, sorting things – Funnily enough even pre-diagnosis during one of my last jobs at a Blockbuster one of my favourite tasks to do when it was quiet, but had previously been stressful, was excuse myself to go alphabetise the store. Looking back I realise I was effectively calming the (particularly social) stress of the job.
Ritual and sameness can be important, even a sort of disorganised order, chaotic order – everything has its place or its pattern – doing things at certain times of day or in certain ways. I’m not so stuck on that but I’ve been unemployed for over ten years, time is an alien concept to me in many ways – in fact relative-to-waking is probably my schedule.
Particularly strong passions and fixations is something almost every autistic person I know has. Hell, neurotypicals love hobbies and collecting shit, so mix in the compulsion and orderliness of the autistic mind and you’ve got a winner.
It’s in this department I think society really lets autistic individuals down because often the systems for getting people to pursue their interests are not set-up to be autistic friendly, meaning those on the spectrum have to go through a lot more trouble to do what they are naturally inclined to do.
Imagine if, in the process of teaching a cat to hunt you made it go through several classes in understanding predator-prey interactions…Yeah, cat’s bored, and it knows how to hunt. But you won’t qualify it to do so until it has passed these arbitrary barriers. It keeps a lot of autistic people from making the huge differences in the world they are capable of, especially in science, technology and industry but in communications as well. A verbal autistic person being permitted to speak, as an interested, non-qualified, non-expert in their field is going to enrapture you…Of course I’m biased.
A hard thing to talk about is self-injury. Especially for a male autistic, I think often this is mistaken for a show of force or aggression, a deliberate tactic to intimidate someone watching whereas actually it’s…I don’t even know how to describe it. Like scratching an itch. Sometimes you’ve got to bang your head, punch a door or flail around.
But this isn’t just called ‘Autism explained’. It’s called ‘My Life and Autism’ and of all of the ‘My Life and…’ series this is, honestly, the one that is hardest to write.
There was a chance, had I been diagnosed a lot younger, been given the care and support that I required and the attention my condition deserved that I would not be writing this article today.
I have the free time to work on “We Lack Discipline” because my life’s a mess and my life’s not a mess because of, exclusively, my bad decisions or my fuck-ups and failings. That’s been a tough thing for me to get used to but it’s true.
That’s not to say I haven’t made mistakes, but with hindsight a lot of the mistakes I made were effectively either self-punishment or self-medication for feeling like a failure and my own inability to manage my autistic symptoms.
I have been, since I was a kid, ravaged with sleep difficulties – a problem common with autistic individuals – I am also blighted by frequent panic attacks, thoughts of change and, particularly of death, haunt me. You try making it from 12pm-4am, desperately trying to sleep, but not sleeping, and not thinking about death. It’s basically impossible.
So I drank.
I was socially awkward, but being perfectly honest most of the people I was friends with in my high school years were dicks. I always felt like I didn’t belong, like I was an outsider or excluded, I always felt on the fringe. There were never many people I could turn to and I moved away from my family home at the age of 16 to escape that social situation and a difficult family life.
Drink, then, was a friend.
Alcohol abuse is disturbingly high among the autistic community, particularly those who people might have previously considered ‘high-functioning’ (words like high-functioning, low-functioning and diagnostics such as Asperger’s have since been removed, at least in the NHS diagnoses – replaced simply with Autistic Spectrum Disorder).
For me, the fact is I had no other comforts and alcohol made me feel ‘normal’. I could speak freely, feel uninhibited, move with confidence, and ask what I wanted to ask without fear. Alcohol enabled me to do some of the hardest things I have ever done.
The problem is it is unsustainable.
I’ve told the story of how I’m a drop out – twice!
I was a confused kid, to be fair. Obviously! I was autistic and didn’t know it. I went to a Grammar school as a poor, working-class kid. They tell you this is exactly the environment for you to thrive and shine but realistically you end up being the pariah in a shower of middle-class twats and all kids age 11-16 are twats!
I didn’t know what to do with my life, frankly by the age of 14 I didn’t particularly want a life. Not in that angsty, teenage “I didn’t ask to be born!” resentment but in genuine suicidality. I felt lost and like I didn’t belong. I felt like I caused more problems than I solved. I questioned whether or not I should exist.
So needless to say I did okay at my GCSE exams – Not as good as if I had applied myself, but for a suicidal blossoming alcoholic (I did one of my exams drunk on vermouth – shhh, don’t tell me mum! and one of them half asleep) passing everything and hitting a few good As and Bs you’d think I would be happy. I wasn’t.
I left my home town, and moved to my mum’s home city of Cardiff where I lived for a year. Now my mum, she wasn’t exactly from the nicest of neighbourhoods but whenever we visited everything was civil.
Of course when I went to live there I encountered the local miscreants who threatened to stab me on a near daily basis for being ‘English’. Despite my Welsh blood and my extended family being well known in the area, my place of birth and accent was sufficient enough for these knuckle-draggers to have a problem.
I moved in with an uncle who was, for want of a better term, a complete twat, so it only took a few months before I left and ended up living on a couch in the back room of my then-partner’s family. Effectively I was 16-17 years old and homeless.
At the same time I was going to college, doing my AS levels. Of course this was disrupted by the fact that I got quinsy, a throat condition where you basically end up with massive pus-filled sacs in your throat, slowly cutting off your ability to eat, drink, swallow anything and breathe, and in my case restricting blood flow to my brain. My GP insisted it was a sore throat.
I was in and out of consciousness, doctors told me they reckoned if I hadn’t got to hospital within 24-36 hours the swelling and infection would have been so bad it would have sufficiently cut off blood-supply to my brain enough that at best I’d have brain damage. Worst case scenario, well best not to think about it, eh?
This pretty much erased my spring term and my Easter holidays.
I still got 2 As and 2 Bs in my AS levels, despite missing a term and nearly dying. Not that it mattered much.
I had a job at McDonalds but quit after a particularly ridiculous shift in which I ended up in hospital again with acute tonsillitis, a colleague was not allowed to leave despite projectile vomiting (in food prep – any sickness and diarrhoea is immediate send-home) and my then-partner slipped on the stairs and cracked a rib and was also refused permission to go to hospital.
I was effectively jobless, homeless and living in a neighbourhood where people wanted me dead. At this point I had had physical altercations with some of these people. They used to wait, in a gang, on the corner for me. I couldn’t stay.
So I came home. I went to college back home did a few weeks of a performing arts course and then thought “What the fuck am I doing?” – It didn’t help there was an awkward faux-pas involving me and another lad fucking around with a big stick with a sharp bit. He cut himself pretty badly, I felt guilty, never wanted to go back. Avoidance is big with me and my autism.
Around about this time I also split up from my partner although, frankly, with hindsight, that one was no big loss. The only ex I have who I genuinely don’t give a shit about.
It was also around about this time that an old family friend, and someone who had been a significant influence in my life, my Aunty Mary (I mentioned her in my cat article, for her cat AB), died. It was sudden, and grief can be weird in autistic people. Almost like swallowing a black-hole in a slow-release capsule. You’ll feel nothing and then a few weeks later you’re getting eaten from the inside. I wish I was the writer I am now back then because she was a remarkable woman with remarkable stories and I would have loved to have written them up.
Soon after that I got a job as a phone-monkey at the local insurance place. I don’t think I signed any NDAs so I can freely tell you it was a shit job, at a shit place, the pay was decent but the expectations were ludicrous but I might just be bitter because I got in trouble for audibly singing in the background of someone else’s phonecall. I apologise for briefly, momentarily, enjoying life.
With hindsight, after six months in that job I had what is known as an autistic burnout.
We haven’t covered this yet but autism primarily manifests itself as a ‘problem’ when the autistic individual’s senses and mind are overwhelmed. That’s why autistic people can be very sensitive to smell, texture, sound, lights etc.
In my case I think I’m particularly sensitive to the smell and texture of bullshit because I find if I am doing something I don’t want to be doing for around six months or longer my brain goes “Blpht!” and I end up a crying, screaming, panicking, pacing, death-obsessed, fearful, frightened, confused, overwhelmed and over-sensitive mess.
Now there are two ways this can manifest itself – One way, the ‘meltdown’ is well researched and understood. For all intents and purposes it looks like a tantrum or someone losing their shit but I can tell you there’s a lot of pent up pressure there. This is not a tantrum, this is not bad behaviour. It is almost like injecting an individual with amphetamines, caffeine, a bad mood and a sense of injustice all at once. It is hard to control once it does happen, some people use restraint I suggest that’s about as sensible as trying to calm a bull by strangling it. Do what you can, within reason, to keep someone having a meltdown safe but restraining them is potentially dangerous.
The other manifestation of autistic overwhelm, particularly seen in adults, is the autistic burnout. This has entered into academic discussions of autism only recently, despite having been talked about in the autistic community for years. This tends to manifest itself as a more depressive-like state, with aversion to external contact, sensitivity to sensory information and withdrawal and regression being key symptoms. What can also happen during autistic burnout is an awful lot of meltdown.
On this occasion I acted quickly to remove myself from the situation causing the burnout, gave myself time to deal with the situation and thus it was only a few months long and not too affecting. We shall learn later that autistic burnouts can be a lot more damaging.
Now by this point I am 18-19 years old and if there’s one thing the world will be insistent on telling you it’s that you should not behave like I was, you should ‘grow up’.
If I could help it, I would. This is where being diagnosed late is a real shitter. You end up with a lot of events in your life for which you take full responsibility, feel like a terrible person, think you’re wrong, believe you should do better and actually you were doing great given your limitations. I have felt like a screw-up for most of my life, because I was trying to achieve things that are difficult for neurotypical people, as an autistic person, without knowing, and thinking I should be able to do it easily! It doesn’t work like that.
I’ve told the story of how, on my walk to work one day, I just breeze on right past the building, in my full suit, my Cuban heel shoes, looking like an insurance pimp, I carried on walking, around the corner, down the road, to the train station, got on a train to London – I was going to the motherfucking zoo!
I had no idea where London Zoo was, I think I ended up walking halfway across London to get there, bought my ticket, walked around the zoo, in the drizzle, in my suit and Cuban heels, looking nothing like a zoo visitor, sticking out like a sore thumb but feeling so at home.
You see I’d never not-liked school, I hated the structure. I loved learning. I loved ‘shit’ – just knowing ‘shit’. Read a book, learn about it, what does it ‘mean’, I loved that shit. Study science, learn this equation, and learn about that ‘shit’. I loved all that. I hated the lessons, the bells, the noise, the other people, the deadlines, the structure; exams can eat balls and choke on them. I hated that part of it.
I just love knowing. Fuck how I get to know and fuck testing my knowledge. I just love knowing.
I wanted to know more. I didn’t want to be an office-monkey, I didn’t want to be a desk-job guy or a 9-5 person. That type of life would kill me.
My work and I came to an amicable agreement, and mutually parted ways. I signed on as unemployed but also checked if it would be okay, whilst signing on, to go to college, apparently it was fine, I was told.
I was past child-credit/benefit age and my mum needed some contribution from me. Of the…I think £50 (and change) they gave me £30 went to my mother, £20 was my bus pass and my change was the cash I had in my pocket for the odd Mars bar.
Eventually the Department for Work and Pensions calculated that I was doing – I kid you not – thirty minutes too much in lessons to be construed of as ‘available to pursue’ full time work.
They cut off my benefits.
So now I had no money to provide my mother, no money to pay my bus fare, no other means of getting to college and I was done.
My mum told me she couldn’t afford to keep me, that I had to sort something out or find myself a job. Of course, it just wasn’t that easy.
She insists she didn’t ‘kick me out’ but for all intents and purposes that’s how it felt.
I ended up moving to East Anglia, the small town of Stowmarket, with my then-partner and her parents. Frankly, lovely people who I sorely regret losing contact with.
Time passed, she and I moved to Ipswich where she worked, I’d forgotten that at the time I was doing my AS levels I already started applying for universities. I thought that dream was gone, until Anglia Ruskin University got in touch with me and talked to me about their foundation degree scheme. I’d tack on an extra year, get the basic qualifications I needed and then move on to their undergrad scheme.
I jumped at the chance. What was an extra couple of grand debt to pursue my dream? On the day I took the train to my induction I got a phone call from a recent job application, at Blockbuster, to come for an interview.
Anglia Ruskin is based in Cambridge. I was based in Ipswich. I used to wake a 4:20am (no jokes please, there’s no blazing at that 420, I can tell you) to be showered and ready for a 4:55am train from the local station to meet up with like the 6:30am Cambridge train at Ipswich’s main station, that, would have me at the university by about 8am. There was not another better option.
I did that 4 days a week for my foundation year, working both weekend days. Sometimes my shifts on weekends were 2pm-10pm. So I’d work until 10pm on a Sunday, go home, suffer with insomnia, sleep (if possible) until 4:20am, wake up…I mean you can’t imagine the toll that takes but it was so fucking worth it in my eyes.
I did so well in that foundation year I was able to apply to go to the University of East Anglia – at the time I think it was top 10 in the country for life sciences – we’re talking MAJOR upgrade here. It was sad to leave Cambridge behind but, waking up at 6am instead of 4:20am, as well as the jump in reputation? I was chuffed.
By October that first year at UEA my grandmother was taken ill in hospital with a dodgy heart. I left Ipswich to go home and visit her, decided to stop off at the hospital on the way before even going home. It was only me and my dad there and we both sat by her bedside and I held her hand as she died.
I believe by the following January or February my mother announced to the family that she had found a lump and it had been confirmed as breast cancer.
Remember when I said earlier that autistic burnouts could be a lot more damaging?
I made it to the Easter break, by the barrel-load of red wine and late nights, but I did it. Then I…just didn’t.
I had finished an assignment, drained the last of my red wine, put on some comedy – I think it was George Carlin – to unwind. Only…I didn’t.
My heart-rate rose, and it went higher and higher and I jumped up out of my seat. I paced, I walked back and forth and back and forth and then I just screamed.
Again, with hindsight there had been events leading up to this that could have clued me in that something was wrong but I thought, driving along, me and the then-missus, in the little yellow-Hello-Kitty-Smart car with me suddenly feeling compelled to scream “I’M A CAT!” was just me being weird. I didn’t think it was symptomatic of anything more sinister.
Now, though, it was a lot more sinister, and dark – and all I could see was death and decay everywhere. All I could feel was my body rotting. I walked, I paced, I screamed, eventually my partner checked on me and…
…besides fragments. A shop here. A walk there. A snippet of this film. Playing that game.
That’s all I remember for about a year.
I barely spoke, I seemed to lose all ability to communicate whatsoever. If I did speak it was short, soft-spoken sentences, grunts or monosyllables. My senses were simultaneously overwhelmed and numb, as if I was just full of information and literally couldn’t take anything more in. Meltdowns were almost a nightly routine.
If you ask me anything related to the period between 2008-2011, I pretty much can’t place it. That lost year has all my memories knocked out of whack. This was a full-burnout. I was the ashes of the man I used to be.
Needless to say my studies went out the window. I finished my first year, passed all my coursework and exams on a cocktail of drugs that would floor a medium-sized elephant, never mind a person. I still passed. If I can market myself as anything it’s fucking pugnacious but, returning for a second year was impossible. I was empty. I was a shell.
Doctors’ visits, therapies, CBT, counselling, drugs, I did it all – nothing worked.
My relationship broke down, partly because she was busy trying to live her life but being weighed down by a broken partner, partly due to my guilt at being so broken. I ended the relationship and I know it was unfair of me to make such a decision. However my life, for the decade following that decision, saw little to no improvement. I only hope hers did to at least partially justify my decision. I would have demanded too much of her that she not only deserved but I know would have preferred to place elsewhere.
This also meant I had to move out of the flat I lived in. In order to rent a place I would have needed to demonstrate I was working full-time hours, and, I was, but I didn’t have a full-time contract. Nor did I have two part time contracts because I was essentially working between two stores in the Blockbuster chain so the extra hours were casual not contracted.
As a result, I basically ended up homeless again! This time, though, given my condition, I moved back in with my mum. I was 22ish at the time, so that was eleven years ago now.
I tried to kill myself with a staggered overdose of co-codamol and tramadol. I don’t recommend that. If the sickness from your liver shutting down on you doesn’t put you off, the sickness of the drug they inject you with to counteract it will.
This led to me being assigned a social worker. It also led to me and her telling the local mental health team to stop fucking around and get me some damn therapy because the drugs weren’t working.
I ended up with a good therapist and she really helped me. I came to understand my own thoughts, and patterns of thoughts, a lot better.
Two years later I felt chipper enough to return to university and finish what I started but…Let me tell you; this is the thing with autistic burnouts. Sometimes they take things from you that you can never get back.
I was not the same person, I struggled more, I found myself increasingly isolated, increasingly stressed, despite any extra assistance I was given and…This time I didn’t persevere. Realistically, I suppose, I’m only a one-time drop-out! I quit.
There was stuff going on distracting me, I don’t want to put it all on the past, the present at the time was hell too. I was supposed to be getting help paying for a self-contained accommodation but every time it came to getting that money it was like sucking iron through a straw. I returned as a second year, everyone, socially, already had their groups and cliques and there were areas where I just didn’t have that same ‘as awkward as everyone else’ first-year thing. They had their own dynamics. I felt out of place and, before, a couple of glasses of red wine and I’d shove myself right in but by then – nah, that didn’t work anymore. My granddad in Cardiff was suffering with his health and my mum had a secondary cancer scare around this time which, of course, set alarm bells ringing off in my head! Once is bad luck, twice is a pattern.
I came to feel like my trying to be successful inevitably caused others harm. I felt responsible.
Either way everything got too distracting and, frankly by second year undergrad biology you start realising what a façade it all is. By the time we’re getting to ethics talks about patenting discoveries my socialist-sense was tingling! This wasn’t what I wanted.
But what did I want?
Well it took me about another ten years to answer that and I’m only just formulating a plan.
In the meantime I had another relationship and that really taught me a lot about myself, about others, about acceptance, about difference, about similarities. It afforded me the opportunity to travel, to learn about other parts of the world, other cultures, other cuisines (I like food!) and started my love affair with Ancient Rome! I’ve learned about space and stars and rockets and moons. I’ve learned about more animals and biology. One thing I invested heavily in was learning about people, about biology, psychology, neurology, sociology. I tried to invest in understanding the human creature.
I’ve also learned, thanks to the observations of my then-partner, about autism and about how I displayed symptoms of it. I spoke to my then-therapist about it, she could not offer me a diagnosis with the NHS but she diagnoses privately and would help me fill out a referral. It took around 2 years of waiting for an assessment and then I had it. I still have the email and all the attachments.
For 30 years I’d been feeling like a failure because I hadn’t succeeded at being someone I’m not.
The thousands of words before these ones tell the tale of someone who, for better or for worse, despite multiple breakdowns, breaks, cuts, drop-outs and ‘failures’ has only ever given up on himself twice.
Twice I tried to kill myself.
Even then something about me wouldn’t give in.
Through all of that I never knew my brain was different.
We have all faced massive upheavals over the last year-or-so. Relationships have ended up strained and mine came to an abrupt end after 9 years. There is a whole second-family out there, who I had come to like, admire, love and simultaneously be continually inconvenienced by in the way you only can with a long-term, close, familial relationship. There is a bond there that has been severed and it hurts.
I have lost my best friend, and someone who this working-class lad could chat with on a level most of the other people around me cannot match. I miss those difficult, jousting conversations more than anything else. If I’m ever on twitter (follow me @wldiscipline by the way) and it seems like I’m desperately grabbing for a conversation this is why.
I feel lost, like I have done at so many other points in my life.
Now, though, I’ve got a compass! I might not know the right paths to take but I understand at least why I am where I am and which direction I need to head. I spent 15 years being an ‘adult’ and understanding none of that because of this major difference. Because I am autistic.
For all the family parties I felt awkward attending, all the friendly gatherings where I’ve hidden in a corner, for all the times I’ve wished I could just not be, to turn invisible or simply disappear for a while I didn’t know that this was not because I was a weak and frail person. Far from it! It’s not that my threshold for this stuff is lower any more than toothache is because of a tooth’s weak disposition.
I am the emotional-behavioural equivalent of an exposed nerve. All those times it was not because I was weak, it was because my sense was stronger. It’s not that I don’t like parties; I just don’t like large, loud gatherings of people. I’d love a party if it was quiet and focussed on me! It’s not that I can’t cope with a ‘normal’ job, it’s that my brain literally rebels if it’s under-focussed, it will find a means of focussing on the worst of everything. I need to be stimulated or else I breakdown.
Do you know what? There’s a ton of jobs I could do and I could do them well. I’m never gonna get them. My CV is like swiss-cheese at this point, and I always disclose my disabilities. Always! Because it is unfair to my employer to not have them prepared but most of all it is unfair to me to be persecuted in the result that my disability causes difficulty in the workplace. The unfortunate reality is that puts me in this wonderful ‘discriminated against’ bracket.
So what do I want to do? Well I’ve said for a long time. If I can make a living writing about the things I find interesting, even if it’s only a modest living, I’d be a happy man.
Welcome to my dream.
Welcome to We Lack Discipline.
Thanks for reading.