Letter from the North

Letter from the North Fri 25-Aug-2017

We are all “on the spectrum” 

Or, as I might put it, “there’s nothing new under the sun”. 

The human system is not that original, it doesn’t exhibit nice distinct behaviours where each behaviour or characteristic is associated with only a single entity. One of my favourite examples is a sickening feeling in the stomach: 

  • Food poisoning? 
  • Indigestion? 
  • Seasick? 
  • In love? 

That is, particularly in the case of emotions, there aren’t unique signifiers for individual emotions, indeed the characteristics of individual emotions are rarely identifiable in isolation. Unfortunately a lot of the arena of mental illness suffers from the same problem. It is diagnosed based on symptoms, there are no absolute tests. Worse, it is based on the opinions of an individual of those symptoms as observed by that individual.

So, we get a horrible mishmash of diagnoses for conditions, like autism, and individuals can inherit multiple different ones and diagnoses that change over time. 

In medical parlance the term ‘differential diagnosis’ is the process of ensuring that your diagnosis is not for some other condition that happens to have overlapping symptoms – quite important when differentiating between food poisoning and being in love! Differential diagnosis is at the heart of autism diagnosis and indeed a lot of the DSM. 

It is the ‘differential’ part that I particularly have a problem with, which brings me to the topic of this letter.

The sort of issues I struggle with, as discussed in recent letters ,will often trigger the response, ‘well, yes, I do that and I’m not autistic, what makes you special?’

Which can often be summarised by the statement ‘well, aren’t we all on the spectrum?’ 

For me, there are two responses to that: 

  1. Who decides who is and who isn’t and using what criteria? Similarity of symptoms does not equate to the same condition (food poisoning and sea sickness anyone?) 
  2. Can’t or won’t?  

Simon Baron-Cohen talks about one view of autism as being ‘extreme male behaviour’, and indeed a lot of what you see in autism occurs in observable male behaviour, i.e. classic male behaviour, such as obsessions, lack of social awareness etc.

I don’t totally agree with his thesis and I would emphasise that just because a distinction is made between a ‘male’ brain and a ‘female’ brain that is not a sex and not even a gender distinction but a labeling one. That is, the assumption that a male brain only occurs in a person assigned male at birth and who has XY chromosomes, ditto for the female brain, would be a gross simplification. 

One of the problems in (academic or professional) specialism is that much of what happens in human beings crosses disciplines (called ‘intersection’ in academic spaces) and as non-academics we have to read the use of academic and ‘expert’ language carefully and in context. 

Anyway, my second response above is one I find more helpful than any strictly academic definition: 

are they able to but don’t, or do they want to but can’t? 

It is my experience that a lot of people can, but just can’t be bothered. I can’t, no matter how hard I try. 

That is one of my litmus tests for the difference between just being a bloke and being an autistic ‘male’. It differentiates between describing autism as something that looks like extreme male behaviour from ‘just being a bloke’. Since I believe that ‘male’ behaviour is not something that can be associated with ‘designated male at birth’, it is irrelevant, to me, whether one is discussing male, female, or any other part of the gender spectrum.

I found it was a useful test to differentiate behaviours in my autistic son, especially as a child/teenager. 

Why do I say ‘can’t’, how do you know it’s not ‘won’t’? 

For example, I am very aware that despite the appearance of social skills, all I have to do is relax a little bit and I make all the same social faux pas that many autistics would do, that is I can fake it but it doesn’t take much to catch me out. I learn what is ‘right’, but I don’t know instinctively what is ‘right’ (from a social point of view as defined by NTs)

So, when I worry about my parking space, don’t a lot of people (blokes especially, sticking to gender stereotypes 🙂 ) get driven by habit and expect things to be the same and get angry (cos they are men) or upset (if they are women) if their routine is disturbed?

Well, yes of course they do. The question is, how disabling is it and can they control it if they wanted to?  Is it:

  • An annoyance, albeit one that can result in violence,  
  • Devastating, something that can lead to suicide.  
  • A behaviour that is not the end of the world or … 

At a simpler level, as a parent, when trying to decide if my son was just being a willful child or was actually having an autistic reaction to something, I needed to make a judgement and act appropriately. Because I was able to put myself in his position, I found it easier to identify the difference between can’t and won’t than did others around him who were NT and had no experience or awareness that that there could be such a distinction in behaviours.

However, that concept can be misunderstood. Autism is not an excuse for bad or inappropriate behaviour, but nor is it something that you can be taught to ‘get over’. 

There are parents and partners that excuse plain old bad behaviour because an individual is autistic and ‘they can’t help it’ and there are people who think an autistic is just overacting and needs to get their act together. 

Reality is somewhere in-between and needs awareness to sift the wheat from the chaff . 

Well, that’s the ‘heavy’ content done, so what else this week? 

I’ve been reading The Descent of Man by Grayson Perry, on masculinity, a worthwhile read on the issues that a lot of men outside the spheres of autism and gender diversity struggle with.

Grayson Perry sometimes wears female clothing, often quite extreme, but he makes it clear in the book that when he cross dresses, it is as a transvestite. He is quite sure he is male and would always identify as such. It might seem to be the same as I do, however,

  • I don’t see myself as male or masculine
  • I don’t wear what I do for sexual reasons
  • For me it’s not a fetish, though I do have a number of them ????
  • I wear what I do because it feels more like me than male clothing would

I am (I was at the time of writing in The North, but not at the time of this edit) still working on my letter from 4th August. It is proving a struggle to find a way of writing it that says what I want it to say as opposed to how earlier drafts have read – and work has been intense, not leaving much room for anything else. Last weekend was also carpentry weekend when I built a cupboard to help moving stuff out of one room so I can start converting it into a room for my daughter. 

This weekend, I will finish the carpentry and then I can start moving and sorting.

Sunday is pirates on the prom, Penzance’s attempts to win the Guinness Book of Records  so Teresa and I will be down there, dressed as pirates (so long as it doesn’t rain) 

Bank holiday Monday I hope to get some time finishing off the backlog of letters and maybe even getting some time to make progress on my learning how to use FPGA’s (not that anyone but a very small minority of you might care about that bit 🙂 ) 

Oh, and I’m making a chilli (con carne). At the moment the bird’s eye chilis are rather dry as they have been sitting in the fridge for weeks, but I’ve found that drying out in the fridge does nothing to affect their flavour (think chilli flakes) and I’ve put the chilis (broken up) and the beans in my crockpot and will leave them to slow-cook overnight. When making a different meal I discovered that slow-cooking with chilis in the water infuses right into the beans and seems to work better. 

As to whether chilli is one L or two, I have no idea so will use both spellings and hope someone knows the authoritative spelling which is probably connected to the country?? 

I don’t just use Kidney beans, I also used black eye beans 50:50, can’t explain why, I just do 🙂 

I’ll make the chili itself tomorrow and then leave it to mature for 24 hours or so (i.e. probably for tea after Pirates) 

Teresa prefers it with baked potatoes, I like rice, I like a 50:50 mix of red Camargue rice and black wild rice, takes a while to cook, but I am happy reheating my chili + rice in the microwave so I cook extra rice and Teresa heats up her chilli in a saucepan and pours on to the baked potato. It works for us, each doing their own thing but sharing the basic ingredient. 

Postscript 

Teresa has a lovely smile, but get out a camera and it disappears. No matter what I do or how many photos I take, trust me, the picture at the top here is the most smiley I got!

Well the chilli didn’t go as expected and we didn’t get the right number of pirates (to get the record), even less than three years ago. I didn’t get any of my FPGA work done, still best laid plans as they say.

Teresa tells me this letter doesn’t hang together very well, I doubt it does, as I remind her, when I write, all I can do is to snapshot each thought as it is present at the moment I put finger to key or pen to paper. Afterwards I try to see if I can weave a coherent idea through each letter, sometimes it works better than others. That means the thought that starts a paragraph, indeed a sentence, considering how long some of mine get, and the thought that finishes it may be completely unrelated. The same happens if we are talking in person which I know can be very confusing.

So Chilli Con Carne and autism are comfortable bedfellows for me in this letter, they have equal validity for me, but for you…?

And NO, we are NOT all on the spectrum. Well, strictly speaking, all of us that are, are, but all of you that aren’t, aren’t :-). 

The Bean, The North, Fri 25-Aug-2017

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