Jigsaw
Because you know, its a website about autism so there's got to be the obligatory jigsaw reference!

Tuesday 17 January 2017

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!

1 comment:

  1. Over the last two years I have heard the expression "ideopathic" enough to paper a wall with it. If it were written down on paper, that is. And I wanted the word all over the wall.
    To me, it has come to be NHS-speak for "I don't know what's wrong with you but take these pills every day anyway."
    In spite of the frustrations I feel about my conditions and yours and your brother's, I still hold the naive hope that medical science will continue to increase its knowledge at the current extravagant rate and will one day have a cure for every ill that there is. Unfortunately, our ideopathies may have killed us precisely the day before the pills to relieve us go on sale because fate works that way.

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