Facebook "copy and paste plea" posts: autism as the 'invisible illness'

Some people on Facebook can have this habit of coping and pasting well meaning but ridiculous posts such as the one below to 'raise awareness' of a given issue. This one is on 'invisible illnesses':

Not one of my Facebook friends will copy and paste (but I am counting on a true family member or friend to do it). If you would be there no matter what then copy and paste this. I'm doing this to prove a friend wrong that someone is always listening. I care. Hard to explain to someone who has no clue. It's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside. Please put this as your status for at least 1 hour if you or someone you know has an invisible illness - Ehlers Danlos Syndrome (EDS), IBS, Crohn's, PTSD, Anxiety, Arthritis, Cancer, Heart Disease, Bipolar, Depression, Diabetes, Lupus, Fibromyalgia, MS, ME, Epilepsy, hereditary angioedema, Migraines, Hashimotos, AUTISM, Borderline personality disorder, ADHD, RSD, rheumatoid arthritis , etc.

Urgh. I find this so utterly irritating not least as this example has autism capitalised as if its an acronym. 

There you go:

Always

Unique

Totally

Interesting

Sometimes

Mysterious

I didn't make it up; I found it in Google Images.

So here's the thing that irks me the most. Actually no, you'll see in a minute that there are two or three things that annoy. 

The first one: I don't personally find that I am in daily pain or feeling sick on the inside whilst normal on the outside. I appreciate some autistic people do have such sensitivities that they are in pain but please don't generalise. We are not all the same. Actually, when I am melting down, I am very much not normal on the outside. I swear and shout and my husband will testify that I am anything but having an invisible episode. My behaviour is very odd to a neuro-typical. I have had moments of shutting down and being mute but it is still clear to people who are trying to communicate with me that something is up. Okay so I don't require the use of a wheelchair and I don't need medication for my autistic 'problems' but I would suggest my difficulties are not something that can be seen on my person but rather in my behaviour. Invisible? I am not sure. I would guess to a neuro-typical person they might spot something, maybe not. I certainly find it an odd term to use.

And again, some of the conditions listed could be visible - requiring the use of a wheelchair with joint difficulties, tremors in MS, rheumatoid arthritis causing inflammation and swelling in the joints, etc.

Point no. 2: Autism isn't a bloody illness. I am not unhealthy or unwell in my mind or body and to suggest that is really not nice. I didn't catch it from poor quality drinking water. I didn't get it from eating loads of fatty foods and sitting on my bum all day watching TV. It wasn't caught after going swimming and nor was it from the MMR vaccination. Incidentally I had the MMR vaccine much later in life as my mother wanted both my twin brother and I to have it. It was introduced in the UK in 1988 so we would have been about 7 or 8. I was autistic before it and I am now, just that back then we just didn't know it. There has never been that point where I was neuro-typical and now I am not, unlike those with cancer and many of the other conditions listed where one identifies that they aren't feeling right and a disease or something medical manifests in some way. I do take the point that some medical conditions are from birth but autism in itself is not a medical condition even if it is from birth.

Point no 3: what a wide ranging bunch of things to lump together. I find it hard that one could put autism in the same category of many physical diseases. Cancer. MS. Diabetes, etc. And lets be fair, for those with well managed diabetes, what daily pain is there compared to those with Ehlers Danlos Syndrome? Or those with MS who have the horrific pains? I don't feel any pain except when sensory overload triggers a migraine but whilst it can limit what I can do whilst it goes away, I am not faced with any life shortening or life threatening problems. If I am in the position to manage my environment, the migraines do not occur so often. My autism is not causing a tumour and or damaging my nerves, joints or organs. It might impact on my mental health but I guess any factor in life that adds additional stress that pushes us to our coping limits will have a negative impact on our mental well-being. Again, lumping physical conditions/diseases in with mental health and cognitive developmental concerns is a bit weird. 

So I guess the people who copy and paste such junk feel that they have raised awareness for a long list of challenges/conditions/illnesses people can face and then they can feel smug they have done their bit but what they have done for autism is to further the nonsense that it is an illness.

If you want to help educate people about invisible illnesses, brilliant! But please read about them, educate yourself first and write a well thought out caring post and perhaps do a cake sale to raise some money to support a particular charity. Don't just copy and paste mindlessly because myths around those 'illnesses' in the Facebook post are continued and it doesn't provide the awareness needed as all it does is spread ignorance.

I am sure it is well intentioned but it is bloody irritating. Please stop!

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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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