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 many of these therapists and parents are quick to shut down any dissenting autistic voices who say they haven’t understood it correctly.

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 (I can still say ‘evidence-based’, cos I don’t work for the CDC…).  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.

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.  Whether this 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 a child having intensive instruction in order to pass a music exam – they might be able to perform to the standard expected to pass that exam, but it doesn’t actually develop musicality in the child.  In the same way, ABA teaches children to perform to a particular standard, but it doesn’t make those behaviours innate.

But nearly everyone who wants to play music has to learn it deliberately, consciously, step by step.  Societally mandated social behaviours, on the other hand, are part of ‘normal development’.  People who learn these skills without conscious effort consider that to not have them is anathema, that people who show different styles of social interaction are selfish, boring or weird, and that intensive therapy is required to ‘fix the broken person’.  That agenda may be buried under the desire to do what what they consider best for the child, but it is still there, and it is still being internalised 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?”   I’ll give you a heads-up right now – 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?

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 is actually 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 deepest language and ways of being are detrimental to us, obstructing our chance of achievement or being valuable to society.  But being told in words or actions that we have to pretend to be neurotypical to be acceptable to the world is 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 and with feelings of dependency on others, and the 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 ‘To Siri’, the public sympathy 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.”  As autistic children 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”

 

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

I wrote the original of this a long time ago with my other half, who was a new and less-than-confident student.  I found it again recently, and it is good advice.  It isn’t meant to be a comprehensive guide.  Just tips.  It won’t provide the creative spark to get a really great mark, but it will give the structure and ideas to get something onto paper that should pass, and it gives some basic ideas of things like 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 could be enough to scaffold and showcase your brilliance.

letter-writing-clipart-etc

HOW TO WRITE AN ESSAY.

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 or any idea specific to the subject you’re writing about, it needs to be explained.

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).

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

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.

If possible, always use journal articles in preference to text books as points of reference.  Text books can be 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.  The oldest articles should be 10 years old, unless it is a seminal article (i.e. 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 the damn guidelines.  Or learn to use Endnote or a similar citation program, and make sure it’s following the guidelines for you.

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

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.

The writing process.

Research BEFORE you begin writing.  You may *think* you know what’s important, but it’s much easier to realise you’ve missed a major point before you have to completely restructure your essay to accommodate it.

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 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 draft

Now the writing begins. Follow the structure of the first draft.  Some people suggest you should write the body of the essay first, leaving the Intro and Conclusion until that’s finished (this gives you the opportunity to check if you’re sticking to the point).

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

Never introduce new information in the conclusion.  Have you done this?  If yes, either omit it, or make a new draft which includes it in the body.

Critically evaluate your essay.  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 draft

This is the sprucing up of draft 2.

Reword any personal references (e.g. I, me), and check that the sentences in which they appeared still make sense.  Some courses may not be too strict with this, and reflective essays tend to 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 primary object or you will lose clarity.
Remember, your reader has the IQ 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 as a result of transfusion of incompatible blood products”

Upon completion of the third draft, read it 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?

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.

Aim to make the fourth draft the finished product.  Because each draft will take time, start every essay as soon as you possibly can.  More than a week before.  MUCH more than a night before.  Everyone seems to have a story of the essay they wrote the night before it was due and they got a high mark 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.

Good luck!

In which Bungy Heart falls on her sword.

sad-flower

 

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.

Letter for blog

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.

 

In which Bungy thinks about why she likes change.

Not all autistic people hate change. I *love* change. It’s my equivalent of an extreme sport.

I contemplate starting a new project or trying a different hairstyle the way I have previously contemplated the first drop over the edge of a cliff when abseiling, climbing down into a cave, or flying upside down in a Tiger Moth.  When the moment comes to make the decision, I fling myself into it without allowing time to back out.
Heart racing, eyes shining, little bubble of buoyancy floating behind my face, I write a letter of application or resignation and press ‘Send’ before I think.  I offer myself up as a sacrifice to the hairdresser.  I open a book by a new author.

Seriously, the trepidation that comes from starting a new book can be as powerful as snapping on a harness for a spot of rock diving.  But that doesn’t mean it’s bad.  It doesn’t mean I don’t like it.

Even for an adrenaline junky, though, there are some things that are just too hard.
Letting somebody else choose food for me (“but no fish, no seafood at all, no fungus, no offal, nothing slimy, nothing gritty, no raw onions, tomatoes make my mouth itch, so do walnuts … oh here – just give me the menu”).
Allowing myself free-reign to talk about my interests to people who I don’t know.  (“Are you sure you want me to talk about this?  Really sure?  Please tell me if you get bored.”)  Ten minutes later when the door opens and the listener looks up in apparent relief at their rescuer, I shut my mouth with a gasp and escape out the door, mortified that I let myself talk so long.  This has led to a habit of talking in sound bites.  If it would warrant a TL:DR rating on FB, or even if it wouldn’t fit on a tweet, I’ve spoken too long.  It helps me avoid coming across as weird, ‘other’, strange; I’d like to think I sound succinct.  I probably just sound terse.

This fear of being seen as different, fear of being ‘found out’, or worse – of boring people and making them wish I’d go away – stems from everything I have believed about myself for most of my life.  I can ‘pass’ in normal society, just as long as I don’t stay too long in one place.  Eye contact.  Now there’s an extreme sport.  I’ve developed a way of looking in the general area of a person’s eyes without looking at the eyes themselves.  If I have to maintain the pretence too long, though, it starts to crumble. This is probably why I don’t hate change.

I wanted so hard to be liked.  Primary school was hell, because the people I was with never changed.  They knew who I’d been last year, and presupposed that’s who I’d be next year. Secondary school was better – every new year, new teachers, new classes – it was a new chance to see whether the things I learned from stuffing it up last time would work better.  And they did.  By the end of high school, I’d found several people who could usually tolerate my company, even on school trips.

When I started Uni – wow!  I was a social success.  I had friends.  In fact, there were people like me, people who liked to read alone in cafes, or talk about big concepts and ideas, or listen to other people enthuse about the small area of focus that they found incredible.  There were libraries of all sorts, full of fat books of information, or journals that had real articles in them, not pictures of celebrities.  They even had a library with bean bags and fantasy novels.

There was always a conversation starter – the lecture we’d just been in, the reading we should have done, the assignment due soon and what we’d found to support our argument.  And other people *added* to the conversations we were having, with thoughts I hadn’t had yet.  My brain was getting bigger, and my social circle was expanding with it.  Everything was interesting, everyone was there because of learning.  I didn’t excel at everything, and I had stressors, but being part of a larger picture was incredible.

When I left the relative safety of Uni for a time, taking a year off between 2nd and 3rd years, I had a job.  Hours and responsibilities and other people to interact with who didn’t really care about concepts, but were pretty fascinated about the girl on the tea trolley who left because she was pregnant, and that one over there who mumble mumble [oh crap – is that a social solecism?  Have I done that?] mumble.  At first I maintained my new sense of positive identity, but I felt the ground cracking, and tendrils of self-doubt were reaching from the cracks to twine around my ankles, growing into full, fat, grasping tentacles of who-I-used-to-be.
Oh, how terrified I was of who I used to be.  Of people finding out that my ‘passing’ self was a fake.  Of falling back into the old patterns of wanting desperately to connect with people but having no idea how, no idea when to just shut up, no concept that I was annoying, and no insight into how to change any of that.

Even though I was doing a degree that I didn’t really want to continue, I settled back at Uni with a sigh of relief.  Things were a little different now – I’d realised that I hadn’t actually changed as much as I thought I had.  I’d had a sight of the chasm waiting for me once Uni was complete, and I wasn’t in a hurry to go tripping into it when I couldn’t see the bottom.  I completed the degree.  Bachelor of Science, with a major in Palaeontology.  Because why not?
And what does one do with a Bachelor of Palaeontology?  Of course.  One volunteers for Meals on Wheels while figuring out one’s next move.  And that was exactly the right thing to do – but that’s a story for another day.

But there’s been another kind of change recently.  A large one for me; a real paradigm shift.  In recognising myself as autistic, in removing the stigma and shame from that word, I have found comfort and familiarity despite the changes.
I have been able to revisit my past and realise it was never ‘out to get me’.  It was just trying to be recognised.  It should never have been buried.

And in finding a group of women who have also recognised this in themselves, I have discovered a tribe, where ‘who I used to be’ is not only welcome, but is recognised and familiar.  Where who I am now doesn’t have to fit a preapproved pattern.
I’m not just talking about the ‘world’s pattern’ either – the extroverted social world that is so very uncomfortable and exhausting.  There’s a pattern that most people seem to expect of autistic people; a diagnosis and definition that was developed around boys.
Women with autism tend generally to have a slightly different set of challenges and issues.  We can often hide in a crowd and appear … ‘normal’.  We can keep up a facade of fitting in.  But if you think we’re just dealing with the stuff everyone does, try living closely with us and tell us that in six months’ time…  Share a meltdown with us.  Learn how we close down communication after a long day.  Come shopping with us for a new shampoo whose scent we can live with…

Women and girls with autism are gradually becoming more recognised and understood in psychology and related professions, and as they are, boys and men whose autism doesn’t fit the classic pattern are also being better recognised.  We have lived with a fathoms-deep fear that we’re actually crazy or broken, because being ourselves just doesn’t work.
Autism – as a concept as well as a ‘condition’ – has become the change that has taught me that I’m not insane nor broken, because the others who wade with me, waist deep in the discomfort and ‘otherness’ of their daily lives, are not insane or broken.  Just different.