Autism Acceptance Month – Day 4

How have people reacted when you’ve ‘come out’ to them about your Autism?

Well… yes.  That’s an interesting collection of memories.

The world is pretty ignorant of Autism, despite years of “Awareness” campaigns, and a mass of writings by Autistic authors.  People seem to retain an image of Autism as being the domain of young boys in glasses talking in a rapid monotone about train timetables or dinosaurs, or non-speaking children rocking in a corner and hitting themselves in the head.  A person’s pre-conceptions will always colour their responses, and someone who’s a wife, a mother, a friend and a nurse – and Autistic – is something of an anomaly to many.

I started sharing my what-ifs and maybes with a small group of people well before I sought diagnosis.  The most common reaction was something like, “What? Why would you want to have something like that?”, or “You’ve always been a bit quirky, but you’re not like one of them.”

As my understanding grew, I only became more convinced of my essential Autisticness.  I realised things about myself – like the fact that I have never made “normal” eye contact.  When I was told, as a small girl, that I should look people in the eye when they were talking to me, I learned to do that.  When I did, though, I completely spaced out and didn’t hear a word they said.  Eye contact is an all-consuming thing – not actually painful for me as it is for lots of Autists, but it’s definitely not something I can multi-task with.  Some time later, I was told I “shouldn’t stare at people like that”, so I was confused briefly.  Without even realising it, I learned to look at the bridge of the nose, just near the inner corner of the eye.  And nobody complained any more, so that was the “right” answer.

I also learned more about sensory sensitivities, auditory processing of information, executive functioning, conscious (rather than innate) processing of communication.  I came to recognise stimming, hyperfocus, shutdowns and meltdowns.  As I understood more, I also became better at raising the topic, explaining my reasoning, but I also became very aware that it was fast becoming my “Special Interest”.  I’d learned many years ago that I’m not allowed to talk about my Special Interests as much as I’d like if I want to be accepted. Most people just don’t want to hear it.  So I started to suppress excitement, to shut up, pretend my brain wasn’t whirling on the topic all the time.  I kept conversation to a minimum to avoid slipping into expressing my thoughts and boring people, though I’m not sure I succeeded.

Every now and then, I’d let my guard down.  I’d talk to people from the perspective of an Autistic person, and I’d get the same type of response, every time.

“Nah, you’re fine”
“You don’t look Autistic”.
“You seem too normal”.
“Well, we’re all on the Spectrum somewhere, aren’t we?”
“You must be very mild.”

People think these things are supportive, positive things to say.  They’re not. They only reinforce that people *want* you to hide who you really are. When ‘normal’ means ‘fine’, anything that deviates from that is ‘not fine’, even ‘wrong’.  Once I’d peeked into the world of free Autistic expression, it was much harder to maintain the pretence that I was allistic.  Even more than before, I was frantically masking and suppressing on work days, too scared to allow myself to slip into what I increasingly recognised as my natural mode in case I never made it out again.  And then, what?  People would realise I’d been pretending?  Would see that I was ‘odd’?  They would have to *gasp* accommodate me?
I’m not really sure why these things seemed so terrible to me at the time.

Writing this, it’s starting to dawn on me that this frenetic doubling down on my mask probably added to my “sudden but inevitable” burnout.  Nobody who saw me during the time immediately after that would have said I was ‘too normal’ or ‘very mild’.  I allowed myself to rock, to stare into space, to sit tightly curled and do nothing.  This wasn’t just depression – I’d been depressed before.  It wasn’t only anxiety, either.  It looked suspiciously like regression, but it *felt* like breaking, melting and being re-moulded.  It hurt.  It felt for a time like I’d never put the pieces of my mind back together.  But it also dashed away the last bits of pretence, and I realised I could live without the mask.

I don’t remember ever living without the mask before that, except when I was alone with D.  From well before the beginning of our relationship, he has been strongly opposed to pretending, playing games, hiding things.  He has never stopped me masking when we were out with other people, but sometimes he’d ask why I did it.  His integrity and absolute openness have always been refreshing – and rather surprising, even after nearly 30 years together.  In a world where I don’t feel I can trust anyone, he’s my anomaly.

And his reaction to my ‘coming out’?

“OK.  If you’re happy, I am.”

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Autism Acceptance Month – Day 3

As for so many women whose childhood struggles and differences went unexamined, I wore many labels as a child.

“Not trying hard enough”, “show off”, “weird”, “too smart to act this stupid”, “like her father”, “over-sensitive”, “off-putting”, “not caring enough”, “lazy”, “something not quite right”, “putting it on to get attention”.

I *knew* I was trying to do the right things; I just didn’t know what I was supposed to DO to make friends, organise my homework or tidy my room.  I mean – bugger *keeping* my room tidy, I didn’t even know how to get it there.  Everyone else seemed to know this stuff innately – so I accepted that everyone’s assessment of me must have been right.

Things changed for me when my son was diagnosed.

I was given the name of a book by Tony Attwood*, and told to hunt it out and read it, because it’d make a lot of things clearer.  I was also given a great big long list of other stuff to read, organisations to join, information to learn.  I was completely overwhelmed, but because the psych had mentioned the book as well as putting it on the list, I figured that was as good a place to start as anywhere.  Plus it had Nautilus shells on the cover, and I love anything with Fibonacci spirals.

Whew, but did it make things clearer.

My first revelation was in the very first chapter.  It brought memories flooding back of my own school days, reading about the different ways people deal with not knowing how to fit in.
Part way through the chapter, I read a section called, “Denial and Arrogance”.  It was hilarious!  It was like the author had closely observed my own father, taking notes across all sorts of situations and relationships, and written the chapter specifically about him.  I laughed, I read it to my family, I re-read it and laughed again.  Every detail was correct.  The next section on ‘dealing with limited social competence’ was titled, “Imitation”.

I stopped laughing.

“The child or adult may remember the words and body language of someone in a similar situation in real life or in a television programme or film. He or she then re-enacts the scene using ‘borrowed’ dialogue and body language. There is a veneer of social success but, on closer examination, the apparent social competence is not spontaneous or original but artificial and contrived”.

So apparently, the condition hadn’t skipped a generation after all.

That spoke to me so particularly, the idea of observing, practicing, ‘borrowing’ personae.  Collecting traits and mannerisms to increase my repertoire of ‘things to say and ways to be’.  Learning to count when I looked at someone’s eyes so I didn’t jerk away or stare too long, constantly processing how many sentences I’d spoken about myself, and when it was time to ask something else about the other person.

For the next 18 months, I read everything I could about autism.  The more I read, the more I could see those patterns in my own life.  The bafflement I felt when trying to understand the fickle social alliances of other girls.  My “obsession” with fairy tales and horse stories – well past the “normal” age for little girls to stop reading books like that.   My sensitivity to light, smells, certain sounds, textures.  My fascination with people’s lives and stories, but feeling like I was coming from an outside observer perspective. Even the people I liked.  I have always been drawn to people at the margins; the nerds, the weirdos, the ones who never managed (or never wanted ) to join the social scene.
I was the one watching Phantom of the Opera who could never understand why Christine wouldn’t have *preferred* to stay with the Phantom in his underground cavern.  Her Viscount was so boring!  He did nothing at all except talk about love and brood over her connection to the Phantom.
I spent some years in primary school avoiding other social outcasts, feeling that if I wasn’t ‘tainted’ by association with them, I might be acceptable one day.
How much I regret that now.

I joined online groups.  I met with autistic people in real life.  I started seeing autism everywhere – most commonly in the people I’d known and liked for years.  (NB: I had presumed this was the ‘Baader-Meinhof Phenomenon’ – the one where, for example, if you’re thinking of buying a certain brand of car they suddenly seem to be everywhere – until these people started getting diagnosed themselves)

It was only in late 2016 that I finally paid an exorbitant amount of money to see a clinical psychologist with a specialty in the diagnosis and support of women and girls on the Spectrum. I had a lot of reasons for seeking a diagnosis, which I spoke about here, but I suddenly became scared and lost all confidence in my self-assessment.

The psychologist gave me a questionnaire to fill in prior to the appointment, and loaded me up with more questionnaires afterwards, to be handed to her receptionist before I left.  During the assessment appointment, she asked me a lot about my childhood, my experiences as an adult, my passions, challenges, and family.  Then she sent me away till the following “reporting” week with no more idea what she was going to tell me than I’d had when I arrived.

I was so nervous by that stage.  I didn’t feel I could be part of the groups that I was so happy in if she told me I wasn’t autistic – or even if I was merely subclinical.  I had finally found something that made sense of my whole life to that point – but what if she said, “Nah, everyone was right all along – you’re just a lazy weirdo”…?

The next week, I was fidgetty, shaky of limbs and core, and in a squeaky little voice I said I was very, very nervous.  So she took pity on me, and her first words were, “Well, you’re definitely Aspie”.

I whooped!

I don’t remember much of the appointment afterwards, but I was so happy that I kept hugging myself and grinning.  All that week, I kept saying, “I AM Autistic.  I really AM Autistic.” and smiling to myself.

 

* ATTWOOD, T. (2007). The complete guide to Asperger’s syndrome. London, Jessica Kingsley Publishers.
The title is outdated now, but the book is still a good basic reference.

Autism Acceptance Month – Day 2.

For me, learning about my Autistic identity has been about meeting my tribe.

First of all, *having* a tribe is something of a buzz.  Growing up, not knowing why I was different from everyone around me, or really knowing anyone like me, I had very few close friends.  Nobody shared my perspective, people misunderstood my facial expressions, and frankly, I came across as bossy, emotional and argumentative, frequently correcting people (well they were *wrong*), and speaking without thinking through the sequelae.  Other people were something of a mystery to me – I didn’t know how most people just ‘got it’, but I was struggling to fake the whole human thing.

Meeting others like me was something of a revelation.  Slowly, I am learning to untie the mental knots that I tied for safety, to keep me from speaking freely; starting to trust that “I really don’t want to” can be a reasonable excuse for not joining in, finding companionship with others who are also playing quietly on their phones, or shrieking uproariously over some shared observation.
Learning that being me was OK.
That was it.  My earth-shattering moment, my own personal freaking revelation.
I am me, and that is OK.  And there are others who are like me – I’m not a lonely alien.

But the tribe themselves – who they are – that’s the really awesome bit.

What do I see in my tribe?

Passion
Professionals speak of our “highly restricted, fixated interests that are abnormal in intensity or focus.”  Huh.  The researchers and specialists who wrote this line have dedicated their life’s work to a very narrow and specific field of medicine or psychology.  But sure, let’s pathologise it.

I prefer a quote by Simon Pegg to describe this phenomenon.  He was talking about geeks, rather than Autists, but geekiness is something of a cousin to ‘autistic fixed interests’ – and the intermarriage of the two is significant.
Many geeks are autistic.  Many autists are geeky.

Autistic people can geek out at some really unexpected things, too.  It’s not all Star Trek and train timetables.

From my tribe, I have learned something of chocolate making and pottery wheels, Australian fungus toxicology and tower cranes, teapots and hugelkultur gardens.  I have been shopping for butcher’s knives with someone who saw a joy in steel that I never knew was there, mentally flew the path of mutton birds’ great loop migration to Siberia and back to southern Victoria, and become indignant about the indignity heaped on the blob fish when viewed at sea-level.  I have walked, talked and made signs for a life-consuming parkrun, retained a smidgeon of statistics understanding from someone who actually likes it, and listened with interest as someone spoke passionately about the importance of our passionate interests.

Egalitarianism

This is something that is felt, rather than talked about much.  That constant comparison, stratification and jostling for position seen in most groups of allistic people seems muted in autistic people.  This can be a problem in situations like school and employment, where respect for authority is expected by default rather than granted through merit, but it also accounts for the relatively easy mixing of 20 year olds with 70 year olds, academics, unemployed or underemployed people, tradespeople, doctors, stay-at-home parents and artists in autistic groups, with an appreciation of others’ value that is quite unusual.  Hand in hand with this, seemingly, is a distaste for financial grasping or using others to boost social capital, and and a passion for fairness and equity.  Reduced judgement on ‘acopia’ (a made up pseudo-medical word that means ‘not coping’) – your bed isn’t made?  Meh.  You can’t face going out of the house?  That’s fine – do you want me to come there, or shall we chat online?  You’re on your fourteenth week of extensions for your essay, you’re just about blue from panicked breath-holding, and you’ve run out of valium?  If you’ve got a script, I’ll pop up to the chemist for you.

Empathy

The popular misconception that Autists lack empathy – or that we merely lack cognitive empathy or theory of mind – has been broadly promoted by persons unnamed who clearly have a limited ability to recognise and understand autistic feelings and thought processes, and therefore have great difficulty acknowledging  perspectives differing from the typical, and attributing states such as empathy to autistic people.
(That’s a joke, for anyone not familiar with definitions of cognitive empathy and theory of mind).

Being people who have had a far higher likelihood of being bullied as children, Autists frequently go out of their way to understand about the perspectives of other minorities, and are careful to support and protect those whose rights or personhood are threatened.  Autistic adults seem to grow into activism and advocacy rather than out of it as they start to find where they fit into society, and this activism may be on a small scale, providing individual support, or on the level of public policy, with many niches in between.  Activism and advocacy are expressions of empathy.

Our expressions of empathy and solidarity towards friends may also look different from the typical.  My personal perception of the connections made in allistic circles is of pandering and flattery, along with insincere expressions of sympathy or friendship.
Of course, this perception is a stereotype, coloured by negative experiences, but autistic ‘reaching out’ does tend to be different.

Often there are more practical suggestions than condolences or consolation.  Sometimes, focussing on a small area of a problem to reduce the whole may seem more achievable than trying to address it all at once, so it appears to others that we’re missing the point. We may completely forget to say, “Gosh I’m sorry you’re struggling” or “That’s wonderful news” if we’re particularly moved.  Much of that initial response is learned social behaviour that can slide when our emotions are engaged.  My immediate response when someone is hurting is, “what can I do to alleviate that?”  And frankly, acting on that is a greater and more costly expression of empathy than a half-dozen empty words, spoken or written.

Other celebrations:

Tribe is only one of the things I love about being Autistic.  Well, these are part of my own personal Autism – everyone’s experience is different.
Some of the others, in no particular order:

– Synaesthesia, particularly with regard to music.  I heard Edvard Grieg’s “Morning Mood” from Peer Gynt at the Melbourne Performing Arts Centre when I was 14, and the colours of the day unfolded in front of me, from chilly pinks and grey-greens, a single songbird calling to its friends, then warming until heat spirals of red and gold are felt on the face and chest, and settling finally into a lazy, contented warm day with bees buzzing and just the hint of a breeze.  (https://www.youtube.com/watch?v=wCEzh3MwILY)
The characters defined by music in Peter and the Wolf, by Prokofiev (https://www.youtube.com/watch?v=N4ZHPiHzeAE)
The bustle of the streets of Paris depicted by Gershwin.  Actually, anything by Gershwin, and most things by Grieg.

– Being able to think and act quickly in an emergency. If every day of your life things feel like an emergency, it stands to reason that an emergency is not that different to every day.

– A deep love of structure and patterns, particularly of the patterns of language and written words.  The construction of a well-formed sentence with just the right descriptors is a beautiful thing, but crafting these into something that takes meaning from one person’s mind and develops the same setting in another – that’s quite incredible.  Logic is another constructed pattern I love – developing an argument and covering each base, systematically building one point on another, avoiding precarious leaps, and shoring up the sides as you go.

– Noticing details.  The structure of a flower, the skin of a gecko, the un-threading of individual instrumental lines in a piece of music to see how they work.  Seeing the detail and learning the science or understanding the painstaking work that is inherent in anything beautiful does not in any way diminish your appreciation of the whole.

– Hyperfocus.  I really, really love the feeling of hyperfocusing, when there is nothing between me and my subject matter.  No considerations of food, chores, and very little thought of toilets (I can usually bring a book or article with me, so I don’t even have to stop reading).  I haven’t really hyperfocussed the way I used to since I became a parent, but it makes those times I can even more precious, because I savour them.

 

A note about celebrating Autism.

We who are champions of the idea of  Neurodiversity (rather than embracing the medical model of Autism which states that we’re fundamentally damaged and deficient beings) are often harangued by people who tell us we’re deluded, or that we’re “obviously too high functioning to represent *my* [son, friend’s child, other example of an autistic person with high support needs]”.  Celebrating our special qualities, proclaiming our Autistic selves – clearly we’re either lying to ourselves, or we’re being insensitive to other, *real* autistic people in their sad, broken Autistic lives – right?

Hrmph.

There are many Autistic people whose daily support needs are high – requiring assistance with hygiene and other tasks, non-speaking, unable to live independent of a carer – who also celebrate their Autism and uniqueness, and promote the Neurodiversity model.  Some of those people have a high profile, and have expressed Autistic Pride publicly (and been flamed for it).  Many more *don’t* share their thoughts with the morass of critical humanity you find online.  And really, who can blame them?

I share my own thoughts.  I don’t claim to speak for other Autistic people, though I do describe what I see in my tribe.  But as others before me have found, when we speak about our most personal and meaningful things, others nod.  Personal experience leaves a deeper footprint than broad generalisation.

Autism Acceptance Month – Day 1

The whole of April is designated “Autism Awareness Month”.

I think most people are aware of Autism.

People know it exists. They just mostly don’t know what that means.

Autism is a genetically mediated neurological difference which affects the way a brain is ‘wired’.

It is reported to show itself in brain scans as ‘extra’ connections. Most brains shear off a large percentage of neural connections, focussing on social meaning and communication. Autistic brains have these social and communication connections too, but don’t develop ‘super-highways’ of them – they retain other aspects of input processing, which means that there is a reduced filter for most sensory stimuli. reduced inhibition of “unnecessary” input. That thing where you can smell something or hear a buzzing noise when you first walk into a room, but soon ignore it and don’t notice it anymore? Yeah, nah.

Without respite from input, the autist can become quickly overloaded and overwhelmed. This is the root cause of many of the so-called behavioural aspects of autism.

Some of the ways to reduce this input include:

– reducing focus to a single thing (hyperfocus) – in a small child, this may look like spinning a car wheel to see, feel and hear it spin. In an adult, it may be work, Candy Crush, running.

– physical movement, which also gives a reduced focus, and also provides a better sense of the external world and your body’s place in it. Spinning and flapping are part of this. Stimming – fidgeting, repetitive movements.

– routines. If other things feel unpredictable or harsh (noises, lights, other people’s actions), ensuring that some things are familiar becomes much more important. Routines are a part of self-care, and an anxiety-reducing consistency in life.

– ‘restricted’ interests. Huh. Most people have a small handful of things they love to do, talk about or read about, but social rules forbid people from dwelling on them constantly… out loud. There’s a need to pretend to be interested in sport, gossip, reality TV. But not *too* interested, cos that would be weird, right?

Things like social communication are perceived as … well, only as important as many other things, and often far less interesting. Seriously, what is this value judgement in favour of talking to people? Why wouldn’t a book, a cat, a new journal article be just as interesting and important? Why wouldn’t a rich internal world be far more engaging than the mundane world of mandated school, work, housework, external demands?

I *like* people – getting to know who’s behind the face; learning what really matters to them. Small talk? Well… I can do it if I have to. It seems pointless, and it’s exhausting, but I can fake it.

People also perceive autism as being the myriad co-morbidities that attend it.

• Autism is not an intellectual disability, although many people with IDs are also autistic.
• Autism is not a mental illness, although many autists do struggle with maintaining mental health.
• Autism does not have clear physical characteristics.  There’s no such thing as “looking Autistic” – while some people may fit your mental image of an autistic person and others do not, that’s not any kind of indication of “how autistic” they are.  Autism also doesn’t have physical disability inherent in it.  Several joint and co-ordination conditions are more likely to be present in autistic people, but they are not the autism.
• Autism does not always imply an inability to attend to daily living activities, although this may well be part of someone’s personal collection of challenges.  Many things, including executive functioning difficulties, sensory sensitivities, overwhelm, shut-down, concurrent mental illness or physical disability or catatonia, even an intense period of focus *can* affect the ability to perform daily tasks, but for some people that’s not where their challenges lie. That ability is also very likely to fluctuate daily or hourly.  But they are aspects of a person’s individual experience.  They are not the autism.
• Autism is not an illness, not a deficit, not even – in and of itself – a disability. Don’t get me wrong, it *is* disabling. The world is not geared for autists. It is too loud, too bright, too angry and pressured. The world is also very wary of difference, and will always seek to pathologise it. Remember, it wasn’t so long ago that being same-sex attracted was listed as a mental disorder.
• Autism is also not some kind of “Einstein Syndrome”, creating brilliant little mad professors. Intellect is as varied on the Autism Spectrum as off it. Certainly hyperfocus can at times develop an interest into a consuming passion, but it’s not fodder for ‘inspo-porn’.

This April, if you happen to encounter “Autism Awareness Month” posts, events, articles, please remember this: we autists don’t need the faulty ‘awareness’ propaganda that we are so often presented with, the microaggressions that seek to place autistic people back into their damaged little boxes.

We are not damaged.

We need acceptance, appreciation, even acclamation of our neurology; not in the patronising manner that declaims, “look what they can do despite their autism”, but a real appreciation of what autism can do for us – and for you.

The somewhat sordid story of Andrew Wakefield and his claim that the MMR vaccine causes autism.

This is a post I wrote earlier this year about Andrew Wakefield’s story and its effects.

bungyheartblog

1n 1998, a British doctor named Andrew Wakefield – along with 12 colleagues – conducted a study looking into the link between autism and gut issues, and published a report of it in the Lancet, a respected medical journal.

The paper raised the query as to whether the triple antigen measles, mumps and rubella vaccine (MMR) predisposed children to autism.  The study wasn’t actually trying to examine any link between the vaccine and autism, there was no evidence in the collected data to suggest any link, BUT – the paper worded that statement in a way that it “did not prove an association between measles, mumps and rubella vaccine and the syndrome described.  Virological studies are underway that may help to resolve this issue.”

The trouble with this wording is that it hints that there *may* be a link, even though the data didn’t support one.  This was – as…

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Whose voice on ABA?

People are confused about ABA.
At its most basic, ABA is about changing “behaviour of social significance”.
All ABA does this, or it’s not ABA.  The parent(s) and/or therapist identify behaviours they want changed, and apply strategies to change them.
Decisions on what behaviours to extinguish are made by people who *believe* that they have analysed and understood the relationship between the behaviour and the child’s environment – but these therapists and parents are very quick to shut down those Autistic voices who suggest they’ve got it wrong, that they don’t understand what’s going on for the child.

ABA is presented to parents as something that needs to be done intensively and early; if you miss the 7yo window, it’s too late. But why?
Adults or older children who *wish* to learn strategies to help them with social discomfort aren’t the concern. Choosing when to mask and when to release that mask is a privilege of free adulthood. Preschool children don’t have the luxury of choosing which behaviours they are allowed to keep.

It is also presented as ‘evidence-based’.
Now I am strongly a proponent of evidence-based interventions in medicine and psychology.  But there are limitations to evidence bases, and in the case of ABA, the two largest limitations are the choice of outcome that is being measured, and the lack of accountability to the people most affected.

“But volume [of case studies] tells us nothing about the quality of the studies or about the methods used to achieve outcomes (many early studies relied upon hitting the children).
What is a scientific study without random assignment to groups?
That cannot control or identify key variables?
That makes no measurement of treatment fidelity or treatment integrity?
That does not provide sufficient information to allow replication, due to inconsistent usage of terms, contradictions in descriptors of procedures and a mixed bag of comprehensive models?
All this without even getting into issues of researcher bias, attrition, small sample sizes, validity of outcomes, the reliability of the measurement of outcomes and the significant underrepresentation of the population under study.”

Hughes, M-L. (2008). “ABA: Giving Science a Bad Name?” The Psychologist, Vol 21 pp. 444-449. https://thepsychologist.bps.org.uk/volume-21/edition-5/letters

 

In almost all ABA studies, the outcome measures are pre-intervention/post-intervention measures of observable behaviours.  In other words, “We saw the children (doing something or not doing something that is unacceptable).  We applied the ABA techniques, then we observed again.”

Now here’s the thing.  If you spend a lot of time with a child with a particular agenda in mind, the child will indeed change their behaviour to meet your agenda.  They will become compliant.  As Ally Grace says in her blog post titled ‘Real Science’ and ABA, “Peer reviewed medical and academic articles will only tell us that autistic children have been repeatedly, successfully, for many years, made more compliant through many hours of ABA therapy per week.“

Whether this compliance is through fear, such as was common in the early iterations of ABA, or to gain approval and commendation, it will be somewhat successful in that it teaches children to give expected responses to specific situations.
It’s like undergoing intensive instruction just so you can pass an exam. If you study intensively, you might be able to perform them to the standard required to pass that exam, but it doesn’t actually develop understanding of the subject in that child.  In the same way, ABA teaches children to perform particular tasks to a certain standard, but it doesn’t make those behaviours innate.

But societally mandated social behaviours are not usually learned intentionally – they are considered to be part of ‘normal social development’.  People who do learn these skills without conscious effort consider that to not have them is anathema, that people who show different styles of social interaction are weird and uncomfortable, and that children who don’t pick them up naturally require intensive therapy to ‘fix the broken person’.  This agenda is usually buried deeply under the desire to do what what they consider best for the child, but it is still there – and the message of brokenness is being internalised deeply by the children subjected to it.

“But how can anyone possibly know what effect ABA has on our children?  Who knows what’s going on inside their head?”
There is an answer to that question, and it is NOT “nobody”.   As your child grows up, finds a way to express themself, who will they identify with?  The people who have been where they have been, who have shared suffering and joy in ways that reflect their own lives.

We, the adult Autistic community, have our own style of social interaction.
Autistic-dominated space exists, though rarely, and it’s wonderful.  It doesn’t always or necessarily involve spoken language, and it understands and welcomes stimming – including the big kind where you hang upside down or spin in circles.  It rejects casual touch, or any touch without express permission.  It frequently involves info-dumping and “proudly emot[ing] on a somewhat childish level” when we are thrilled by something, and it often includes long periods of sitting together quietly, reading or playing on our phones.  In this protected space, we’re not socially deficient, weird, different, or broken – and socially-dependent neurotypical adults feel as awkward and wrong-footed in Autistic space as we often do in the “normal” world.

In the experience of Autistic adults (who were, please remember, Autistic children, and *many* of whom were indeed “like your child” – however you perceive them now), imposing allistic expectations on Autistic children is *not* helpful, and can actually be quite detrimental to their mental health and well-being.  The message of ABA is “you are different from other children, and that means you are broken, and need to be fixed.”

The fundamental goal of ABA has always been, and is still, one of “closing the gap”, making Autistic children indistinguishable from allistic children.  Like so many other minority groups, we have been told that our language, our fundamental ways of being are detrimental to us, obstructing our chance of achievement or being valuable to society.  We are told in words or actions that we have to pretend to be neurotypical to be acceptable to the world – and this is deeply demoralising.

Demoralisation syndrome is a recognised psychiatric disorder, seen most commonly in people with disability or chronic illness.  It is associated, among other things, with a subjective sense of incompetence, with feelings of dependency on others.  It is associated with the self-perception of being a burden, and the syndrome carries a high risk of self-harm or suicide.  Those awful videos posted by ‘Autism Moms’ of their child in meltdown. The blog posts describing how hard it is to parent an Autistic child – with details of toileting habits and other private matters, there for the whole world to see, the muzzling of Autistic adults who have spoken out against public expressions of children’s private lives, the public sympathy expressed for parents who kill their Autistic children – these are all messages to Autistic people that they are a burden on society.

And Autistic adults have *told* today’s parents of Autistic children this.  We have told professionals and funding bodies and interest groups and organisations for some years now that ABA has had persistent negative effects on us, but we keep hearing, “but it’s saved my sanity, surely that’s good for him?”, “she behaves so much better now”, “ABA taught him to talk”…

Our objections are dismissed, ignored, minimised.  We are shouted down in parents groups.  We are blocked from pro-ABA pages.  We are not seen as the authoritative voice of our own experiences.  We are told, “but my child is nothing like you”, “but you’re so high functioning”, “my child will never be able to write like you”, “but ABA is different now”.

But it’s *not* different.   It *looks* different. There are no more cattle prods, no more withholding of food to force a child to eat more widely, no more holding a stimming child’s hands at their sides so they can’t move (that’s stopped, right?  Right?), but the message of ABA remains – “Your way of being is not acceptable.  We, the authority over your life, will try to fix you.  If you don’t change, you have failed us.”
This message is far more overt than people seem to think.  Quin, an Autistic adult, gives an outline of eir* first day of ABA as an adult. I found it hard reading.
https://theinfiniteofthought.tumblr.com/post/125270426788/aba-session-1-write-up
In a follow-up post, Quin describes eir overall experience of ABA.  https://theinfiniteofthought.tumblr.com/post/131513430858/my-experiences-with-aba

And ex-ABA therapists are also describing the mindset that allows children to become – not children who are struggling to cope with a complex and confusing world, but “the unruly embodiment of behaviors to be reinforced, shaped, or extinguished, a list of ‘excesses’ and ‘deficits’ to be tallied and managed.”  “I Abused Children For A Living”

And as Autistic children, the survivors of this “therapy” grow up, their voices are added to the tide of Autistic adults around the world saying that the internalised message of ABA has caused them grief and trauma.

And still nobody listens.

But we keep talking.

 

Here are just some of the things Autistic adults are saying about ABA.

“If your goal is to help a certain community, one of the first things you should do is make sure you’re in touch with the community you’re trying to help. Their voices are more important than anyone else’s.”
“Why I Left ABA”

“it is the autistic people being submitted and who have been submitted to ABA, and not the ABA practitioners, who get to decide if ABA is abusive or not.”
“A note to (what feels like) every ABA therapist ever”

“I propose replacing all of the garbage with more supports, more accommodations, and more acceptance of differences which naturally occur in human beings.”
“The case for backing the frick off”

“Sometimes aggression is the only way your child has to communicate that something is wrong. ABA might be able to stop the aggression, yes. But at what cost? Do you want your child to be trained to put up with pain and abuse? Of course you don’t! That was a ridiculous question. But it comes with an obvious answer: don’t use behaviorism to train your child out of aggression. ”
“If not ABA, then what?”

“Similarly, if you train an Autistic to make eye contact and not flap their hands and say “I love you, too” and stay on task, it just makes them into an Autistic who can fake being not-autistic with some relative measure of success.”
“ABA”

“Critics of modern day ABA, a lot of them adult autists who have grown up with this type of therapy, say that although it is a lot better, ABA is still abusive because it can physically hurt to be forced do to make eye contact, eliminate stimming or give hugs on demand. They argue that it violates the child’s autonomy and right to say no, especially when children as young as two are having programs of up to 40 hours a week!”
“Why ABA in autism therapy could use an overhaul”

“People claim it’s not that type of ABA, it’s modern, it’s kinder, and gentler, it’s not abuse. They try to remove our words claiming that what we’re talking about isn’t what they know, or what they do.”
“Modern ABA”

“Any BCBA can cut some of those heads off the hydra, and say “Not all BCBAs are like that!”. Or “nobody uses electric shock anymore; that was in the 70s!” or “My ABA is play-based” or “I give kids frequent breaks; no 2-hour sessions of DTT here,” or “I would never extinguish stimming.”
But cutting off some of the obvious heads, or even all of the heads that self advocates have found words for, doesn’t solve the basic problems.”
“A basic problem with ABA”

“Before ABA is considered, ask yourself, is this a treatment you would employ for your neurotypical child?  What message are we sending our Autistic children?  What will this message do to their self-image?  What message will be internalized, a message they will carry with them well into adulthood?  Will this message serve them, make them feel good about themselves, help them lead happy, fulfilled lives.”
“Tackling That Troublesome Issue of ABA and Ethics”

* Quin uses e/em/eir pronouns.

In which Bungy reviews her motivations for having an autism assessment.

Prior to seeking my diagnosis, there was a question or two about why I think I need a ‘label’, why I’d pay that much money if I’m so sure I’m aspie and whether medicalising different shades of normal neurodiversity is helpful or even advisable.

Recently, I’ve even seen some serious vitriol against people advocating – or seeking – diagnosis.

Adults are getting diagnosed so much more frequently now because as the understanding of autism is broadening, our children are being diagnosed.  And our children’s issues are excruciatingly familiar to us, and the more we read about autism, the more familiarity we find, and the more we realise that our own childhood struggles can also be explained by these same neurological differences.

But here’s the thing.  Autism is not a stigmatising box to pack people in.  It’s not a fashionable label to explain away bad behaviour or poor parenting.  It’s a group of neurological differences that affect the daily life of the person who has them, whether or not they have a diagnosis, and whether or not they have learned skills to cope or to mask their difference.  But if you accept that autism exists, even if you believe it to be part of normal neurodiversity, why would having an assessment and a diagnosis be inadvisable?  This paints autism an undesirable label, which you can avoid being stuck with by ignoring it and minimising the challenges it can bring.

The question of whether or not a diagnosis is helpful – this is a different question.

When I first brought up the idea of me getting assessed with my son’s ASD-specialist psychologist, she asked me to go away and think very hard about why I wanted a diagnosis, and what I thought it would do for me.

That was a hard question.

Hard to hear, because I really just wanted her to say “I can tell you now, you probably are.  You don’t need to spend all that money to confirm something so obvious.”

Hard to think about, because the reasons seem to be buried so deeply inside me that I don’t really know how to begin to articulate them.

All I could really come up with was “I just really want to know”.

I’ve been thinking about it, though, and here are some of the things I’ve been exploring.

 

 

It could be that I want an excuse for when I stuff things up socially. 

I do that sometimes.  I’m assured it’s not just an ASD thing, but there are times I have no idea what I’ve done wrong, and I’m *expected* to know.  People seem to be fed up with me, but – as I learned in the playground in primary school, people don’t *want* you to ask.  They want you to already know.

I keep hearing that most people have an intuitive sense of how to act in a socially appropriate manner.  That was so very untrue for me as a child that I admit to really rather doubting it for everyone.  However, if untrue, I have taken a long time to learn them.  Every social convention, from eye contact to asking about someone’s holiday is a learned program that I expend energy on maintaining.  My mind is constantly racing ahead, cognitively processing every aspect of the interaction.  “OK, we’ve talked about me for three sentences now; it’s time to ask about them.” “Do they appear to be comfortable with how I’m looking at them?” “Eye contact.  Too much?” I am pretending to be a social being; imitating the social conventions I see around me.

The trait of “creative imitation” is common to many girls with autism, and can also be seen in some boys on the spectrum.  Waiting till you work out the rules before joining in; copying or imitating the person you think is the most successful in the group; these are ways we survive.

I feel like I’ve faked fitting in my whole life.  I am comfortable in many different groups – as long as you don’t scratch too hard, question too deeply, push to find my weaknesses.  I feel like an anthropologist – out of my own setting and observing yours.  Or theirs, depending on how you identify yourself.

I have to live in this social world, and if I don’t make accommodations for the needs of other people, I will get hurt.  Or you will, through my inflexibility.

I admit it can be hard at times for me to judge the boundaries between speaking ‘the truth as I see it’ and being rude, so I usually choose to err on the side of not hurting people.  Sometimes I’ll write out my thoughts and ask someone I trust whether it seems appropriate to say it (or send it); mostly I just delete it.

There are still times I mess things up.  I learned recently that I lost someone I’d considered a reasonably close Facebook friend because I was rude.  I honestly can’t remember what I said, which doesn’t make it any better for them or for me, it just makes me seem more insensitive.

I’m not a huge fan of ‘I couldn’t help it’ as an excuse for being insensitive, though.  Nor even, ‘that’s just who I am’.  When other people say things like this, I fume.

• “Sorry you took that badly; it’s just the way I am. I say what I think.”
• “I didn’t mean to hurt your feelings, but you know I’m autistic so I guess you’ll just have to deal with it.”

Honestly, I don’t need or want an excuse for social solecisms.  People will always judge on outcomes, not intentions.  It has taken me a lot of years to learn to apologise without trying to justify myself, and I consider that of more worth than an excuse.

 

 

It could be because the label explains so much that was there anyway.

Labelling something doesn’t give it any new properties.  Recognising your experiences in a label or diagnosis doesn’t change who you are.  When I sift my life through a filter-screen of “how autism affects people”, very little of it is left unexplained on top of the screen.

Looking back over my childhood, I always felt like an outsider.  This is so common amongst autistic people that it’s a cliché.  Different, missing something, watching from the outside; feeling in social situations like someone too scared to enter the skipping rope’s arc.  And when I did run in – the rope hit me.

I *knew* there were rules to help you make and keep friends, but nobody would explain them to me.  I’m not sure anyone else would have even acknowledged there were rules, except when I broke them.  Because I “should have known” how to act.

I chose to complete a science degree that I knew I would never use, because Uni was a comfortable place, and I felt safe there.  After I completed this degree, I chose to work in aged care because most of the work is in the form of doing concrete things that help people, and because there is a level of acceptance among older people for the vagaries of younger people that just isn’t there with your own age-group. Later, I completed a nursing degree and worked in palliative care, because there’s always something you can do to make people a little more comfortable.  I felt like I was doing something worthwhile, I felt valued, and there is a routine to nursing that never changes, even on Christmas Day.

I have always struggled with sensory things.  I have never been able to tolerate bright sunlight.  The day I discovered polarised sunglasses will remain as one of the highlights of my life.  It meant I could drive.

I have always struggled with food textures and smells; I’d sit with my cold dinner till dark, waiting for a chance to hide the pumpkin.  Nobody ever managed to make me eat tripe.

I never knew when my voice was too loud; I would increase the volume to feel as if I was being heard, which probably didn’t encourage people to listen.  Constant noise like a fan or the buzz of a clock-radio still makes me edgy.

I like predictable touch – deep warm still hugs, not light, rubby or patty ones.  I also like sharp touch – when I’m under stress I find pulling my hair reduces it.  This was my motivation for ‘cutting’ when I was a teenager; fortunately that compulsion has gone. Other people have said ice or ice water gives them this sensation of sharpness, or snapping a rubber band on their wrist.

If I was trying to avoid the label “autism”, I could just accept these things as being a jumble of unrelated aspects of myself.  But if I was trying to avoid the label “autism”, it suggests I believe there is something wrong with having that particular label.  It says that I accept there is a stigma, and implies I would rather the history of my struggles be a somewhat considerable pile of individual issues than a divergent neurology.
These ‘individual issues’ fit a pattern, though, and anyone who is familiar with the experience of autism (rather than just ‘knowing someone with it’) can see this pattern, if I reveal myself enough for them to know the parts are there.  It all fits.  And it is very satisfying when apparently isolated facts nestle together to make a larger picture.

 

 

It could be because I feel like I’ve finally found my tribe.

Until I met the OH, I hadn’t realised that being around other people could be a comfortable and completely relaxed experience.  Pleasant, sure; there were people I could almost be myself with – and the enjoyment I get from their company is precious.  but there was always an underlying sense of anxiety.  I’ve been lucky in finding someone who is weird in a different but compatible way, and I was pretty sure it was a rare and beautiful thing.

Since finding and chatting with groups of autistic women, though, I’ve realised that my differences aren’t isolating, and my quirks are shared.  Weirdnesses and even weaknesses are funny and comforting when others identify with them.  Ask any group of autistic people about perfume.  Or counting steps.  Or skivvies.  Not everyone will share all your quirks, but all the quirks you’ve ever been embarrassed about are probably shared somewhere in the group.

Strengths can also appear in a clearer light when you see the same strength in others like yourself.  When you see the immense work that goes into maintaining ‘normal’ for someone else, and know that they do it to make others – who don’t understand that struggle – feel comfortable, you see a strong, hard-working and compassionate person.

 

I would like to share my struggles – and the hope that goes with them – with others who are learning what it means to .  I want to be able to say to people who only see their struggles, “you have worked so hard at this all your life, and you are more successful than you have ever before realised.  You have been working at maintaining two lives, but in this space you don’t have to pretend.”  But I don’t feel I can stand in front of a group and say, “Hello, I suspect I may be autistic but nobody has ever confirmed that.”
My biggest fear regarding an assessment is being told that I am mistaken, that my perceived connection with this tribe I’ve found has just been a construction in my own mind, and is not based on a common neurology at all.

Do I need a label to be authentically myself?  To connect with others like me?  Of course not.  But if a label explains myself to me with more clarity, allows me to know where I need to make changes and seek supports in order to be the best me I can be, there is no dishonour in owning that label.

 

 

True acceptance is not about avoiding labels and thereby stigmatising people who hold them, but about accepting autistic people as … autistic people.

 

In which Bungy Heart avoids a meltdown.

I am skirting around a meltdown as I write this.  My heart rate has increased, I feel every nerve is on edge and my ears are buzzing a little.   Sounds, smells, every sense becomes sharper, and things that I can normally process quickly then ignore become insistent, and I can’t push them aside.

My sons are aware I’m struggling today, and are leaving me alone.  Unfortunately, they are playing a game which involves singing a high-pitched and repetitive song, laughing, then starting the song again.  They are in good moods, and I am trying hard not to yell at them.  The noise is assaulting my ears and making me blink and cringe.  They’re not very loud, but every sound is louder than it should be.  Their interaction teeters on the edge of an argument and backs away again and I flinch and clench and relax, fearful of having to take any responsibility.

Sometimes when I melt down, it’s set off by an argument with one of my sons, particularly the older one, the one who carries my ASD genes.  His rigidity, his absolute certainty that he is *right* clashes with my own, and it’s like rock hitting rock.  Anger and frustration increase; our helpless fury feeds off each other until one of us crumbles or explodes. I’ll usually run out of the house if I’m about to explode.  Occasionally he follows me out.  That makes things difficult – I have to escape.

OH has walked in, irritated because the internet connection is dodgy and dropped out when he tried to download a program he had paid for.  The provider has already “fixed” this twice, and he is angry at them.  I shy away from his anger, though it is not in any way directed at me, feeling his jagged-edged tension grating against mine.  The buzzing in my ears becomes an audible tone, swelling and moving in pitch and volume.  It is distracting.

OH offers me the job of downloading the program, and he’ll ask the kids to bring the volume down, which I accept because it removes the children from my sphere of responsibility, and the computer issues from his.  I hit ‘download’ on the program he was trying to access, and just let the computer do its thing.  I can keep hitting download while I do other things if I have to – that’s not my stress.

The fan of the computer is driving me mad, though – it keeps increasing and decreasing its speed as it struggles to download the program.  The rabbit in the next room is chewing on a piece of cabbage, and it crunches intermittently, not getting into a rhythm.  I can hear it shuffling in the bedding hay.  Cars on the main road at the end of the street.  Birds on the roof.  People outside talking.  The kids bickering over something, not seriously but it’s more auditory input.  The noise inside my ears jangles against all the other noise.

Writing this has calmed me today.  The predictable sound of the keys clacking while I type is something I can consciously put all my focus onto for a while and the stress of the overload backs down.  It helps that everyone is aware I’m overloaded today, and they are trying to help.

Sometimes I don’t have that option.  Sometimes my perception of the sensory input keeps growing until I’m overwhelmed.  Sometimes something inside me goes ‘ping’ and all the tension from the buildup of unprocessed information gets directed outwards like someone pulled the lever on a door, and the overloaded senses burst outward in a fury that I can’t stop.  I’ve become better at sensing it building, and getting away.  I’ve become better at shutting down – people talk about shutdown as if it’s a bad thing, but it’s a way to avoid a meltdown.  Shutting down is turning the focus inwards, or onto one thing, until the barrage from the outside becomes muffled, dulled down.  There are times it’s deliberate, a way of circumventing a meltdown.  Today was like that.  Sometimes it seems to happen in a rush, and it’s more like a short-circuit.

But sometimes, a meltdown can’t be avoided.  People talk about the straw that broke the camel’s back – the one, small, almost inconsequential thing that made the load too hard to bear.  When you’re autistic, it’s hard to filter sensory input.  It’s hard to shut out non-important noises, or get used to smells on the air.  A tag or a seam in clothing scratches at you like fingernails, constantly and unavoidably – that is, if you’re not in a place you can shed the clothing.  A light touch from a person, particularly an unexpected touch, or a sharp noise, or some other sudden input can be like a catalyst, crystallising all the sensory information and forcing it to expand and explode out of the container it’s in – which would be my brain.

When I’m relaxed, I can just about manage to process all the information I’m receiving.  I’m still not great at filtering; I still hear, see, smell, feel all the information, but my processing speed is faster, and I can deal with it all as it comes in.

When I’m anxious, or angry, or stressed in some other way, the processing gets clogged up, and the information is ALL THERE, right at the forefront.  There is too much information, too much input.  The more feedback I get, the more stressed I get, and what filters I have disintegrate quickly, piling information on me so fast I feel like my mind has turned off.  The quiet, logical voice in the back of my mind that sustains my clarity of though even when I’m scared, deeply sad or angry disappears and I feel completely out of control.  I don’t know what I’m doing, what I’m saying, and I am completely given over to ‘fight or flight’.  I’ve been known to scream, pull my hair, cry uncontrollably and hoarsely – none of that quaint, ‘wipe away a tear’ stuff, this is primal noise – and hit doors and walls.  Pain is a great grounder; once it finally makes its way into your haze, it is a point to focus on, to pull yourself back by.

Meltdowns are terrifying; more so for the person experiencing it than for those watching it.  We don’t have the privilege of being able to walk away.  We often don’t have the privilege of being able to recognise or articulate exactly what we’re feeling – but ‘alexithymia’ – the inability to read your own and/or others’ emotions – is a topic for another post.  As we age and mature, we learn the warning signs; for me it’s the buzzing in the ears and the increase in the intensity of my reaction to sounds.  These warning signs are usually enough to signal we need to leave a situation somehow – go for a walk, pop some earplugs in, or hide in a toilet if there’s no other quiet place.  The potential doesn’t ever leave you, though.

The average neurotypical person doesn’t seem to realise that the behaviour they think they are seeing is not the experience.  “Everyone melts down now and then”.  “Everyone is set off by little things when they’re stressed”.
Yes, of course.  We’re all human.  The difference is that when you’re autistic, you don’t melt down primarily because you’re angry.  Hell, I get angry like the next person, and can have a right little tanty over an annoying but insignificant situation – but that’s not a meltdown.  I’m still in control of that.

A meltdown is all about the overload.  It’s what happens after a pin meets a balloon.  It’s mentos dropping into diet coke.  It’s the information on the inside suddenly being bigger than the outside, and the outside not being able to contain it.  And it’s scary.

Bungy Heart’s Tips for writing an essay

This blog describes the fundamental steps and considerations in writing an essay.  It’s aimed at a senior high-school or early tertiary level, but may  be helpful to anyone who has something they need to write.
I wrote the original of this a long time ago with my other half, who was a new and less-than-confident student at the time.  I found it again recently, and it is good advice.  It demonstrates the techniques it describes (for example, this is an introduction paragraph), and gives ideas on making it easier to read, but isn’t meant to be a comprehensive guide.  It won’t provide the creative spark to get a really great mark, but it will give tips about how to get ideas onto paper that should pass an assessment. It gives some basic ideas of things like how to structure the essay, how many references to use and how much to write for your introduction and conclusion.  For people who like concrete or literal step-by-step guides, this guide could be the structure which scaffolds and showcases your brilliance.

 

HOW TO WRITE AN ESSAY.

General Tips

Always assume the reader has the IQ of a gnat, which requires everything to be spelt out, clearly, step by step, before comprehension can take place.
If you introduce a technical term, jargon*, or any idea specific to the subject you’re writing about, it needs to be explained.
(* Jargon (noun): special words or expressions used by a profession or group that are difficult for others to understand.)

If you wish to use a handy three-letter acronym [TLA] or an abbreviation [abbrev.], write it out in full the first time, then use square brackets to show the form you’ll be using from that point on.

When writing an essay, always tell the reader what you are going to tell them, then tell them, and finally, tell them what you’ve just told them.  This isn’t a creative writing course! (well, unless it is).  It also makes it easier for the marker, who can then easily see if you have understood the topic.
It is VERY GOOD to make it easier for the marker.

Generally, you want your sections to be somewhere around these ratios:
Introduction = say what you will say (~10-15% of word total)
Body = say it (~80% of word total)
Conclusion = say what you said (~5-10% of word total).

When faced with a broad topic area, it is prudent to narrow the focus to no more than 2 main ideas per thousand words. There’s always more that could be said, but trying to fit more information than that in an essay will just make it confusing.  Choose a focus (that fits the purpose of the essay).  Tell the reader that a specific focus will be used, acknowledge that more could be said, and then offer a reason why you’ve chosen the focus you have.

Never criticise the articles you’re using, nor suggest that they have flaws, without clearly explaining what is being criticised and why it’s a problem.  If using statistics, never criticise or analyse those statistics without showing an example.  Only criticise if it is necessary for the point you are trying to make. It’s probably prudent not to criticise at all if one of the authors of the article is marking your essay.

Never introduce a topic or side issue if you don’t intend to say something about it.

If the essay is written in sections with sub-headings, it makes it easy to summarise the main points raised in each section at the end.  It also makes it easier to read.  Remember, we want to make it easier for the reader.

Reading and references.

I have put the ‘Reading and references’ section before the writing process section on purpose.
Research BEFORE you begin writing.  You may *think* you know what’s important, but it’s much less stressful realising you’ve missed a major point before you have to completely restructure your essay to accommodate it.

If possible, always use journal articles in preference to text books as points of reference.  Text books are a good starting point, but it is much better to follow up any suggested topics via the papers cited in the text.  It is even better to find really recent articles (e.g. last 5 years) via a literature search – because the references cited in a text book are already getting old even before it gets to your course list.
The oldest articles should be 10 years old at the very most, unless it is a seminal article (one that had a strong influence on all the work that came after it) or a historical essay.

Try to use AT LEAST one reference for every 200 words of the word limit.  This means if the essay is 2000 words, you need to cite at least 10 articles.  More is good (don’t be silly about it), but it is better to use good references effectively than it is to shove six or seven tangential references into brackets after one minor point.

Find out how your references need to be formatted and do it that way.  Pedantically – down to the last comma or full stop.  They really do care that much.
Seriously, this is such a stupid thing to lose marks over.  Swallow your pride and just follow their damn referencing guide.  Or learn to use Endnote or a similar citation program, and make sure it’s following the guidelines – exactly, down to the last comma or full stop – for you.

The writing process.

When researching the essay, attempt to identify the themes (i.e. main ideas) present in each paper; put numbers for different themes in the margins or highlight them in different colours.

As you identify a theme, write what it is and its corresponding number or colour on a separate piece of paper and stick that on the frame of your computer screen or on a message board, away from your desk.  This helps you find the information quickly later (rather than losing it in a pile of paper).

Collate articles discussing similar themes.  It might help if you put them together in manila folders, but at least have the theme(s) written on the front of the article.

Identify the themes that are most commonly represented in the literature, and concentrate on these.  Remember, use ~2 themes / 1000 words of your essay limit.

For each theme, identify opposing views about it in the literature, and incorporate these into the theme’s area in the essay.  This creates the illusion that you are balanced and reasonable before you destroy the view that you disagree with.

Dissect the themes into subthemes via a similar numbering system, grouping those that are similar.  Two or three subthemes per theme would normally be sufficient, but your reading will usually suggest what’s important to discuss.

The first stage – a preliminary draft

The first draft could begin as a visual flow chart or diagram of what you want to address in the 3 central areas (i.e. Intro, Body, Conclusion).  Get down as many ideas as you can, using the themes you identified to give you ideas, and worry about arranging it all later.  A creative approach here can provide some ideas or novel approaches that a regimented one may not.

When you have lots of ideas on paper, try arranging them as dot points under theme headings.  Usually this will set off more ideas; include them.

Attempt to arrange the points so they flow logically from one point to another.  At this stage, you’ve got the information for your essay all done, and it only remains to write it down.

The second stage – writing it out

Now write down of the information you found. Follow the structure of the first draft, and check back on it frequently.  Map out the points you identified, then fill them in with information.
Many people suggest you should write the body of the essay first, leaving the Introduction and Conclusion until the writing is finished. This is a good thing to do – in addition to summarising the points you’ve made, if your focus shifted while writing, you can make this look deliberate with a good introduction and conclusion.

In the introduction, spell out precisely what you are going to tell the reader, (i.e. what you have already written) and in what order.  This is also the place to mention that other focuses could have been taken, and to justify your approach.

Never introduce new information in the conclusion when you’re writing an essay.  Have you done this?  If yes, either omit it, or include it in the body of the essay.  (Save last-minute revelations for that variety of novelist who drags their books out to over 1000 pages, but wraps everything up hastily and inexpertly in the last chapter.  That’s *not* how to write an essay.)

Read your essay critically (i.e. read it with careful thought, not with a negative viewpoint.)

• Does each paragraph address one major theme?
• Is your conclusion consistent with the points made in the body of the essay?
• Does it seem to flow logically?

The third stage – reading and reflecting

This is the reading over and sprucing up of draft 2.

If necessary, reword any personal references (e.g. I, me), and check that the sentences in which they appeared to ensure they still make sense.
Some courses aren’t strict in requiring this, and personal or reflective essays usually expect it, but if you’re doing science or – worse – psychology, they can be anal very strict.  It’s better to assume they’re all anal very strict unless explicitly told otherwise.  Clarify if unsure.

Attempt to make sentences “informationally dense” by reducing the number of filler words, and by substituting one or few words for several.  However, don’t allow informational denseness to become the main object or you will lose clarity.
Remember, your reader has the capacity of a gnat.

e.g.  BEFORE: “A haemolytic reaction, in which the recipient’s blood is destroyed by the donor’s blood, will most commonly occur if you transfuse blood products which are incompatible with the recipient’s blood”

AFTER: “Haemolysis (meaning “destruction of blood”) most commonly occurs when transfusing incompatible blood products”

Upon completion of the third stage, read the essay over and try to make a dot point flow chart of it without referring to your first draft.  How do they compare?  Have you stayed on track?
If you shifted your focus, was it justified?  Do you need to explain more clearly why you chose that particular focus?

Finally, read it out loud.  You’ll find a lot more errors and difficult-to-read bits if you do this.  You don’t have to read it *to* anyone – it’s hard to find anyone who’ll listen, anyway.
If you have to make more than a couple of minor changes because of reading it aloud, complete those changes, and read it out loud again.

Because each stage will take time, start every essay as soon as you possibly can.  More than a week before.  MUCH more than a night before.
Everyone you talk to seems to have a story of the essay they wrote the night before it was due and they got an outstanding grade on it.  If you probe deeper, you’ll find they either spent ages on the research stage (but didn’t count that as writing the essay), or they’ll have a dozen “did it the night before and got a bare pass” stories for every “good mark” one.

Conclusion.

Writing an essay for a course requirement is not as difficult as it’s made out; it’s a process. which has clear guidelines.  Read about the topic.  Work out the important themes.  Write about these themes. Check that you’re staying on point.  Read it back to yourself critically.
This approach is likely to guide you to a pass on the essay – the rest is up to you.

Good luck!

In which Bungy Heart falls on her sword.

 

A couple of months ago, I started a new job.
I hadn’t completely left the other one but it had some aspects that were hard on me, including the overnight on-call once a week that made me feel anxious going into it, and left me drained and flat the next day.  Switching to casual meant I didn’t have the responsibility for on-call nights; just turn up, do the job, go home.  The new job didn’t have on-call – at least, not overnight; just an hour or so in the morning.

The workplace was one that has had a … difficult reputation.  Shaken and traumatised refugees from this workplace are scattered around the city; I’ve been meeting and talking with them for over a decade now.  But I’m not someone who gets involved in petty political intrigues in the workplace.  It didn’t have on-call, it has a nearly completely new management team, they’ve been ‘working hard to improve workplace culture’, which they acknowledged at the interview had been pretty demoralised, but was improving now – how bad could it be?

I should have known.  You *never* ask that question.  It’s like a challenge.

What do you do when a workplace won’t follow its own OH&S policies?
When the levels of unpaid overtime are so high that management set a curfew, getting the security team to remotely activate the alarm 30 minutes after the work day ends just to chase people out of the building?  When they keep piling busy-work onto people who have learned not to speak out about it, but don’t give them any more time to complete it?

What do you do about a workplace where longer-serving staff tell new staff to keep quiet for their own safety and mental health.  Or where you’re told that to function in that environment, you have to “die on the inside”, and *only* work to the documentation, because to actually do a good job takes too long?  Where management tell people not to speak of difficulties or worries about the job, because it will demoralise others?  Where each individual person who speaks up is told they are the only person with an issue, and everyone else is happy with things as they are?

I really struggle with things that make people unhappy.  When I know things are wrong, and that other people are affected, I try to make things better.  This is why my work in palliative care is so important to me – when things go wrong, I try to do what I can to make them better.  I know I can’t fix the underlying problem; I can’t heal people with terminal diseases, but I can help with the pain.  Or the nausea.  Or constipation.  All the daily things that make life less comfortable.

When I saw hurt and anger and hopelessness in this workplace, drawn partly from unfair scheduling and workloads, but much more from a complete lack of interest in this from management, I spoke out.  And I was ignored.

I spoke out again.  I was cautioned not to say negative things where other staff could hear, because the team’s morale was too fragile to cope with someone speaking up about things that were wrong questioning management decisions.

I spoke out again.  I spoke angrily this time, because it was the fifth work day in a row that my schedule was outside THEIR OWN POLICY GUIDELINES, and not achievable within the time allowed.  My words if I’m remembering them correctly, were, “I can’t do this.  It’s impossible.  Nobody could do this.  It has to change.”

I was taken to management, who recommended that I swap the impossible workload with someone who wouldn’t complain about it.  I was also told that my “outburst” and behaviour were inappropriate and had upset the whole team.
Which is weird, cos that’s not what the team said to me.

I was advised – at 4.30pm – that I needed to come to a meeting at 9am the next day.  At that meeting, I was advised that my concerns regarding policy and workloads were beside the point, and that if I had any concerns with my workload, I needed to raise them immediately with the manager.
The next day’s workload was again outside the policy outline.  It hadn’t been when I’d looked at it the previous day; before I got in that morning, it had been changed completely.  It felt like deliberate provocation.  There were no management personnel in the office – all at a training day.
I called the union.

The union member I spoke to had only been in her role for two months, but had already spoken with someone else from the same (small) workplace.  She remembered, because the caller had stood out in her mind for the sense of helplessness and hopelessness expressed.  She had made some suggestions at the time, but was fairly certain that they wouldn’t have been acted on due to the despondency the caller felt.  She made the same suggestions to me.

Me – I wanted to stick it out.  I wanted to make a difference.  I felt there was a need for someone to speak up in this space.  I advised the management team that I had been speaking to the union, and would be following their suggestions, including making incident reports and claiming overtime on days the scheduling was outside protocol.
The manager called me into her office again.  She asked me if I was unwilling to follow management directives, as I had agreed I would in my contract.  I iterated and reiterated and re-reiterated that I was very willing to comply with any management directives that followed their policy.  I drew on every perseverative conversation I’d ever had with my autistic son, and kept repeating that I was willing to follow the policy.
She said that wasn’t what she’d asked.  She asked was I willing to follow directives even if they didn’t fit within the company’s policy.
I asked whether she was saying my continuing employment depended on following directives that did not comply with the company policy.
She said no, but my answer would define the next steps management were going to take.  (so – pretty much yes.)  Am I willing to comply with management directives, no matter how I understand the policy?
I said I couldn’t give an answer at that time.

She gave me another 9am deadline.
I advised that I would be seeking advice from the union, and that I would be bringing a support person from the union to the meeting.  For that reason, I couldn’t commit to the meeting time she had arranged.
She advised me the meeting was already booked anyway (how did she know??), and that if I didn’t turn up, it would be seen as not complying with a management directive to attend the meeting.

She asked whether I thought it was a good idea to leave work for the day.  I would be paid a full day’s wage.  It was 9.15 in the morning.
After consideration, after realising I was shaking so much I couldn’t sit still any more, after realising that I never wanted to set foot in the place again, I agreed that this was probably a good idea.  She advised me that she would personally escort me from the premises.  She also advised me that she would see me at 9am the next day for the pre-booked meeting.

On arriving home, I checked again with the union that I was right in understanding that I could have a support person at the meeting, and that they were not able to insist on a particular time which may not (*would* not, given the short notice) be convenient for that person.  Correct.  I couldn’t speak with my rep, as she was in a meeting till the afternoon.

I emailed her to advise that I had been unable to confirm a time with my support person, and that I would contact her when I had, to organise a mutually convenient time for the meeting.  I also advised that I would be seeing my GP, and would be off on stress/sick leave for the rest of that week and all of the next.

The next morning, I received this letter via registered mail.

I had *refused* to adhere to the protocol?  I had questioned its veracity?

It was right then that I realised there was no point in continuing.  My GP had, the previous night, sincerely counseled me to resign.  He had concerns for my mental health if I continued.  At this point, I realised he was completely correct; if they could ignore my words – written as well as spoken – then they had absolutely no interest in either truth or in their professed wish to improve the morale and conditions of the team.

I resigned.  Actually, my union rep resigned on my behalf.  I never wanted to speak to that management team again.

A week later, I had a text from a colleague to say that the manager had announced to the team “with a heavy heart” that I had resigned “because of things going on in my life outside work”.
Er… no.  No, that’s not exactly correct.
I’m not sure anyone on the team believed it, either.

I’m still dealing with the fallout from this debacle.  I’ve folded in on myself in depression, and shake from anxiety and am struggling to achieve anything.  I celebrate when I can clean the kitchen.  I feel grateful for enough energy to cook dinner.  I meet with friends, then struggle to cope beyond an hour of company – I just want to run away and hide n my cocoon again.

I was there just over a month.