The power in how we describe autism

"A rose by any other name would smell as sweet."

In the play "Romeo and Juliet" by William Shakespeare, Juliet suggests that it does not matter that Romeo is a Montague, from her rival's house of Montague. Here, the surname means very little to her, but it is the worth of the individual that counts.

This is noble stuff. Touching. And naive. Names and language have power.

Something I got really into during my Political Science and International Relations studies was the idea of constructing an identity. My masters degree dissertation was on the construction of the terrorist identity and in this case, it explored how an identity can be used for political purposes. Now, I am not going to politicise autism, although I suspect that might be interesting for those into disability politics, but I think there's something in identity construction. My thesis was about how the media created or at least repeated a narrative around what a terrorist should be and it helped to inform the consumer of such media (print in this case) about terrorism. This was framed in a post 9/11 era that polarised the terrorist and freedom fighter in a good versus evil dialogue.

A brilliant book on the subject is this:
Jackson, Richard (2005). Writing the war on terrorism: language, politics and counter-terrorism. New approaches to conflict analysis. Manchester University Press.

Anyway, autism.
What got me thinking is how language has power. Juliet is right in that if Romeo was Romeo Smith, he'd still be this great guy to her but she misses a point: Montague is part of his heritage and his family and he can't just shake that off like it never existed even if he became a smith.
So how do we frame autism?
Do we approach it socially? Culturally? Medically?
If we describe it in different terms, does it change how it is and suddenly cease sensory overloads? No, but it changes how we as society approach it and that is what is important.

I am listing some words and to see what sort of identity they create:

Negative	Positive
Disease Impairment Deficit Disabled Diagnosis Weakness Abnormal Disorder Treatment Limited "Special" Cure Genetic fault Problem Burden	Condition Difference Unique Diverse Acceptance Useful Integration Welcomed Contribution

I am sure there are lots of other words we could add.

I wonder, where do you think autism should fit into? The left column or the right?
See how that now shapes how we see autistic people?

When Juliet said a rose wouldn't change in of itself if it was called something else, I agree. If we called it a tulip, it is still a rose. But that isn't what matters here. Language is how we understand each other and confer meaning to concepts. What matters is not just what Romeo or Juliet thought but the thoughts of "others too" since they shape the narrative in which we must all live.

Whilst we don't need to take our lives to change such identities and force harmony, the way we use language about ourselves as autistic people helps us move from the left to the right column.
We have it within ourselves to change the perception of autism.

"Two households, both alike in dignity

(In fair Verona, where we lay our scene),

From ancient grudge break to new mutiny,

Where civil blood makes civil hands unclean.

From forth the fatal loins of these two foes

A pair of star-crossed lovers take their life,

Whose misadventured piteous overthrows

Doth with their death bury their parents' strife.

And the continuance of their parents' rage,

Which, but their children’s end, naught could remove,

Is now the two hours' traffic of our stage—

The which, if you with patient ears attend,

What here shall miss, our toil shall strive to mend."

Romeo and Juliet, Prologue

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How I was triggered by pasta

At one of the sites I work at, I have a little lunch time routine.

I quite like pasta and I am blessed to work at a place where the food is generally good. The pasta on offer has some proper decent sauces that extend beyond the usual tomato and basil. They appear to be made on site by a bloke who at least seems to be a proper chef rather than a 'microwave operator'. And the pasta itself isn't mush.

So anyway, part of my routine is to get my food and walk up three flights of stairs back to my desk with it.

Unlike usual, the server gets a china bowl out and spoons pasta bowties into it. I freeze. No cupboard pots?!!? What am I to do with a china bowl? Where do I return it? I have no tray. I don't know the procedures for getting rid of metal cutlery and crockery if I don't eat in the cafeteria. I panic but trying to hide it. I can't compute this change in my little routine.
So there I try and figure out an alternative food. Maybe a jacket potato as I spy throw away boxes. Then if I have that, my pasta routine is interrupted.

All this goes on in my head over no more than 10 seconds but I am acutely aware that I am holding up a queue.

I go with the pasta and add my cheese then making my way to the cashier.

As I climb the stairs back to my desk, my anxiety melts away. I remember we have a little kitchen across from the administration open plan office and there lives a dishwasher. I now have a strategy for any future changes in food containers. I am at peace again.

And all this because our catering people ran out of cardboard cups.

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Does autism even exist!?

Here's an extremely contentious view to start off with but I am wondering if autism does exist, after some of the reading I have been doing for a PGCert in Autism and Asperger Syndrome with Sheffield Hallam University and the National Autistic Society.

Let me clarify because it is a position that could offend.
I am not suggesting that the symptoms, behaviours or difficulties do not exist and I am not denying my own sensory overload issues! These challenges are well documented and no one should be denying sensory overload, having problems with executive functioning such as planning and organising or having a mindset that is geared to not "seeing the bigger picture". It would be incredibly offensive to deny these things for autistic people and those who care for them and I am not suggesting that.

What I am thinking is that when I have been to the doctors with some symptoms of feeling a bit unwell, all the usual tests are run and a "dunno diagnosis" returns as fatigue. It's one of these things that can be a bit like we recognise something is up but we don't know exactly what the cause is, a bit like Irritable Bowel Syndrome. We can recognise the effect but what is truly the cause?! So all sorts of things can get lumped under IBS - an intolerance to gluten, food allergies, how one responds to anxiety, etc. and we don't exactly get to the central cause.

I think a diagnosis of autism can be a bit like that.
The diagnosis method is very much about observations, self-evaluations (where appropriate) and guess work. There's no blood test or urine sample examined so it is down to a professional opinion of a clinician to diagnose. That's great and its important that the difficulties that autistic people go through are recognised.

However, I am a little worried about this though. We have a medical model of disability full of negative words: disorder, impairment, treatment, weakness, syndrome, diseased, etc. and the aim is to offer a medical cure and find the gene or other reasons for this cognitive deficit. And yet, I am thinking this is rather upsetting for someone, particularly for the higher intellectually functioning person, who is now having the essence of their being and personality associated with being wrong. It is hurtful and it is more so when it is something beyond my control. I didn't acquire Asperger's because I smoked 40 a day and eat a diet of full fat cheese. It was how I was born, a genetic deficit perhaps? This negative language helps to reinforce the feeling of "the other" and constructs this identify around autism that it is something we don't want in society and it needs to be reduced or removed. I find it quite difficult on my self-esteem actually because for no fault of my own I am labelled with something that is a double-edged sword. Whilst it gives me certain protections under the Equality Act 2010 through reasonable adjustments, it also puts me into a box where others can make assumption about the sort of person I am, my needs, my limitations and whether my aspects of my personality are legitimate.
"Oh, she likes computing because she's autistic and benefits from the systemising it provides, not because I just like computers"! Actually, I have studied social sciences at university for five years which I don't think would be considered a particularly autistic-friendly academic subject?
Do we ever say that so and so likes Manchester United because he's a neuro-typical sheep and likes it because half his class like it? No, I doubt it.

So, there we have this medical model but then comes the flip side of those seeking to embrace neurodiversity and that autistic people are different but this is a good thing, through a social model of disability. Alas, I am not sure it is that helpful, for a number of reasons.

This perspective recognises the biological differences in autism, something that the academics have been working on for decades and still not got to any single conclusive point. Loads of theories have comes out: Simon Baron-Cohen's Theory of Mind deficit and the extreme male brain idea, weak central coherence and executive dysfunction and there are many more in recent years, some better than others. Over the years, it has been less about the idea of a deficit or weakness and what is emerging is this idea of a cognitive difference. But again, it is still not fundamentally challenging the idea that autism even exists. I think now most researchers would agree that there is no one theory that can explain everything about autism and each one seems to make an attempt at examining part of it.

Here's my problem with it: it is all very well saying that it is okay to be different but does society understand this? Do they know what autism really is? I suspect that many are swept up in this idea of the Rain Man, the disturbed young child running around Sainsbury's flapping their arms or someone they know who is extremely awkward and socially inept. When we say that being different is good, that is fine if our difference still puts us within the acceptable range of what is normal behaviour. It is okay if one doesn't like going to parties but it is quite other if their autism leads to challenging anti-social behaviour. The social model goes along with the medical view that autism is biological and medical and it is something that can be diagnosed as a real concept. It is noble and whilst I think their goals are brilliant to widen acceptance in society, to foster greater equality and diversity, I feel that they missing a big point.

Does autism even exist? Are we trying to create a greater acceptance for something that biologically isn't there!? Cancers, broken legs and diabetes are all identifiable in a clinical matter. We cannot deny their existence but I have a hard time with autism. I am feeling now that it is a lazy catch-all diagnosis where actually those with such a label have a combination of other difficulties that are not interconnected.
I am troubled in different ways in terms of one's intellectual functioning. On one hand, we have the low functioning autistics who are likely to have a comorbidity that could be the cause of their autism and not autism itself, and we have the highly intellectual functioning autistics who have what we might call a "mild autism" that the traditional cognitive theories of autism struggle to fully account for.

What I am proposing is that autism is a bit like IBS or fatigue. It is a sloppy way of saying by the medical world that we recognise that someone has a number of difficulties or differences and this is caused by autism. We don't really know what it is but it could fit under an umbrella group of symptoms and we shall call it autism.

Perhaps it is for the medical world to unpick each "symptom" to identify their interdependence to one another, or there lack of, and see if what someone has is a mixed bag of things rather than lump it under one diagnosis.
Over to you, clinical psychology and neuroscience!

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