Autism only applies to children

"It's Asperger's and Autism Awareness month! In honor of all children who struggle every day!!"

Every now and again I see similar things appear on my Facebook newsfeed from well-intentioned people trying to 'raise awareness' of the suffering that autistic children face. Inevitably with World Autism Awareness Week (27th March - 2nd April 2017) coming up, I expect to see more of those kinds of social media posts. 

There's a few things that irritate:

Firstly they claim to raise awareness and provide no education, no quick facts or anything that we can learn. If you want to raise awareness, actually provide some meaningful and useful content might be a starting point, yes?! When is Asperger's and Autism Awareness month anyway?!

This notion of universal daily struggling or suffering kinda grates on me. Actually some days as an autistic person I couldn't actually say I struggle. I've had issues all my life but I am not sure if it's just manageable (ish!) because this is all I have known or if in the grand scheme of things, I am generally okay? I avoid stuff that upsets me and that's my coping mechanism. I know certain social activities and career paths would upset me so I don't do it. Simple, right?!

Okay, I get sensory overload and yes it's unpleasant but it's not constantly upsetting me. I am one of the fortunate ones who can generally extract myself from situations before they get to the point of a meltdown. I realise too that not all autistic people can do that and perhaps I am on the end of the scale where I have fewer undesirable autism related aspects about myself than many others.

Autism doesn't impact on my mobility either so I think myself lucky that I can do lots of things for myself. 

When I think of suffering, I think of someone with chronic pain and challenges that impact their lives so greatly that a large chunk of it is utterly miserable. Maybe I am an ablest amongst the autistic demographic but I have never put myself in a category of where I feel I suffer daily. I won't apologise for that either. My lens is how I view the world and I can't pretend to fully know or understand everyone's view but I can try (despite supposedly autistic people being void of empathy - yeah, right!). Sure, life can be struggle at times but autistic people don't have a monopoly on that. 

The whole "in honour of" thing...

Are autistic people in need of celebrating or having our challenges, differences and similarities respected via a little Facebook post? We didn't pick to be like this. We didn't earn this cognitive style. It makes as much sense to me as celebrating people with blue eyes. 

WELL DONE all you lot with the eyes the colour of the sky. You worked so hard just being yourself. 

This is how we are and I think most of us, like the rest of the planet, generally get on with it the best we can?! 

It's all a bit patronising for me.

Finally.... 

There is some notion that within these copy and paste crap that autistic adults are off the radar. 

Do only autistic children count? Now you're 18, the Facebook concerned no longer bother about us. Or maybe they think we have a terminal disease called autism whereby we don't actually reach adulthood. Incidentally, I am exceeding all lifespan predictions being in my 30s... Or perhaps one of my autism super powers is cheating death by using complex mathematics?!

Hmmmm or maybe by the time one leaves childhood, we have magically grown out of our cognitive style and become fully signed up members of the "Normal Club"?! Here we have lost our sense of systemising, become extremely empathic and gained wonderful social skills to become an artful host within high society. 

Or more likely, we just get on with it. We perfect our coping mechanisms in time, we learn how to pretend we're okay, understand more about ourselves to avoid things in life that upset us and perhaps care a little less about what others think. It's not that we have cognitively changed in our essence but many intellectually higher functioning autistic people probably have adapted from where they were in early childhood.

So when I see such Facebook posts, don't be surprised if I remind the person about the existence of autistic adults. It's not to be pedantic (ok, yes a touch!) but because it's attitudes like that which reinforce the view that only those in education and young people are entitled to autism related support. This is because I often feel like the existence of autistic adults is denied unless they have comorbidities and require social care and institutionalisation. Us autistics who seem okay on the surface are often forgotten. Time and time again, I think back to my experiences of working in education and my life and seeing support in schools and colleges but it almost disappears overnight once one has left their educational institution.

So please, let's not make sweeping statements that do nothing to help anyone, spread generalisations and misinformation but also ignore a sizeable demographic with autism. I'm not sure we need your kind of sympathy...

Now, if you like, you can return to your fake news, click bait websites and videos of extremely daft people doing very daft things! 

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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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A medical solution to a not very medical problem - occupational health

I decided that I would be proactive at work and request that HR refer me to occupational health.

What I wanted was to have my autistic needs formally recognised in terms of my seating arrangements when we move to a new site later in the year.

What I was seeking to avoid was to be placed in a large open-plan office surrounded by noise, lots of people and near a high traffic area. The last thing I would need is to sit nearby to the printers! That kind of working environment would see my productivity fall, my stress levels rise and I could be penalised in my appraisals if I wasn't meeting my potential.

Alas, to get the clout needed to mobilise various people and departments to take my needs seriously and lead to a satisfactory result, the only way I could think of was through occupational health.

So I visited this occupational health place. It was on a business park not at all accessible for those who don't drive and the lack of easy car parking was worrying (cars blocking in other cars in parking bays). I saw no evidence of disabled parking. I hope that the less able bodied would perhaps be visited at home or at other more suitable premises.

So on the day I was stressed. I didn't know the area well and finding the site was challenging to say the least since the provided map and instructions made little sense. I got there early and was glad that I had looked on Google Street Maps to visualise the turnings and road layouts. It removes some of the mystery of driving around the unknown.

What bothered me the most was the way one gets into the reception. I don't understand how intercoms work in that they seem to each have their own operating methods and the procedure of what to say into it. I often found this process utterly confusing. Some systems remotely unlock the door; others don't. I appreciate the need for security but none of it of what to do was transparent and I think a sentence or two on the instructions about finding the place would have been useful. I felt a little surprised that the door couldn't be unlocked remotely and it was so irrelevant to my day but it still bothered me that someone had to press what looked like a door bell to open it.

The doctor was pleasant enough. I won't be critiquing him but I was somewhat amused when he told me he was familiar with Asperger's Syndrome. Familiar. It made me think he'd encountered it at some point in an hour CPD session but it was clear he was no expert. To be fair, I wasn't expecting him to be. He's a generalist I suspect, who when not seeing me, would to be working with those with mental illness and stress and those who have physical difficulties that require perhaps a different kind of support in the workplace from what I was seeking.

I felt like I had to tell him what I needed. It would have been refreshing if he was leading it because he knows high functioning autism in women but I felt it was really me speaking up about what I found difficult. Sometimes I get so tired of being my own advocate. It would make a change if more people just "got it". When I meet those kinds of people, I really value their insight and experience. It's incredible to feel normal again.

Here's the thing I find odd: it takes a doctor to write a report to HR that I need a quieter working environment. The solution is very much non-medical. Anyone who knows about autism would know the kinds of solutions I am looking for. It doesn't take a doctor to know this. Teachers (those with ASC experience). Carers. Autism researchers/academics. Parents of autistic children. Autistic people themselves. Lots of other people with much more meaningful experience. And yet because these such people aren't clinicians, their expertise and experience counts for nothing in the eyes of HR.

This is what makes things so irritating because I have to get a doctor involved when I am still grappling with the idea of whether autism is even a medical thing.

I get it. The Equality Act 2010 talks about disability as one of the nine protected characteristics. This legislates about discrimination and requires businesses and so on to provide 'reasonable adjustments' in the workplace to disabled people. It also defines disability as having a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on one's ability to do normal daily activities. Autism is covered by this law.

Disabilities are often seen in terms of the medical definition and the doctors are supposedly good at understanding the whole clinical side. They can diagnose such things. It makes sense.

And here's the difficulty for me: I am disabled because my autism has a ‘substantial’ and ‘long-term’ negative effect on my ability to do normal daily activities.

Well, kinda. I make reasonable adjustments for myself all the time through my coping mechanisms. If I can't stand the sound of my work colleague munching through a pot of carrot sticks, I'll make the team their tea and coffee. I win brownie points for being nice and we all chuckle that I have hit my record of making five cups without spilling it. My dyspraxia rather makes carrying hot drinks tricky so I am rather pleased that one of the ladies got a high sided tray that'll fit five cups in it. I am happy to do shuttle runs between the kitchen and office as it rests my eyes from the computer monitor.
By the time I am back with the last cup the carrot muncher has finished.

And also since HR has now listened to the doctor (I am hoping!), my new desk location will not cause me any substantial or negative issues within my working environment.
Perhaps too my husband and child and other people in my life will understand how I operate and change their behaviour in such a way that they don't put me through unnecessary upset. It comes through understanding autism and me speaking up when something is upsetting.

With all these informal and formal adjustments in place, I wonder if actually I now would be considered disabled under the EA2010?!! And yet if I wasn't legally recognised as disabled, I wouldn't then be able to have reasonable adjustments in the workplace.

Whoa... Seems a paradox?!

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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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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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