Month: October 2017

Letter from the North Fri 15-Sep-2017

Incremental Publishing

Hopefully this letter is quicker to write and easier to edit than last week’s, so here we go: 

Teresa was sitting here with me earlier as I supped my first pint of Proper Job and told me that I need a change of topic/subject for these letters, I have no idea what that means, but I think she means less ‘difficult’ subjects? 

I’m not sure how she thinks I find the inspiration behind each letter and hence have any control over what comes out as the ideas for each letter. But I suppose I should try to respect her suggestion 🙂  

That said there are two “rants” I need to get off my chest::

First rant, there was a bit of excitement on Facebook (so you know it must be true) this week which said that Eddie Izzard was Transgender and wanted to enter parliament.

On the second part of that bit of news, I wish I could be excited, but he follows in the steps of others from outside of mainstream politics in the UK (Glenda Jackson and Martin Bell come to mind), who have disappeared without trace. English politics seems to be driven by the two major (and one minor) parties with sheep as followers/members. 

I want my MP to stand up and say ‘that’s not right’ and their leadership says ‘fair cop guv.’ But I know it’s just not going to happen. 

On the first part, all I saw was an awful lot of comments on Facebook saying he (Eddie Izzard) can’t be transgender because he’s said in the past he is a transvestite. Lot of ‘he’s’ (look up personal pronouns) in there  

As Juno Dawson’s book illustrates so well (see the letter  from 18th Aug 2017), it can take time before you are able to work out your sexuality and/or gender. This stuff is quick for some and a slow burn for others. 

In any case, how anyone but Eddie Izzard can know his/her/their/… gender or sexuality for that matter, is beyond me. I really don’t get how people feel they can, should and worst of all believe they are competent to comment on someone else’s gender/sexuality. 

Second rant, there is an autism Facebook group I watch and a wife posted a question, more of a comment really, that she and her husband were heading towards divorce but he has now been ‘diagnosed’. 

There were a number of comments at the time, all by women, all with the same message – ‘don’t let the bastard get away with using autism as an excuse for abusing you’. Now the original poster hadn’t indicated anything of the kind. So, were those making comments talking about themselves, their experiences and/or their fears and then imposing them on this woman and her husband? I don’t know, but again I find it disappointing (but not surprising) how people feel able to form conclusions about other people’s private lives and state those opinions publicly. 

I know nothing of the personal circumstances of the original poster or their partner, but, there is some stuff I do know about: me. I am the ONLY person I can speak authoritatively about and indeed the ONLY person who can speak authoritatively about me. 

I have discussed Cassandra’s syndrome before and it is very real, but abusive relationships go both ways, and speaking as an autistic who has been married 3 times, I was as much abused as abuser. That word “abuse” is, I know, a difficult one and gets tossed around rather a lot, especially in the media, so I use it for effect, not because I attach a particular meaning to it. 

  • I know my desire for control leads to me imposing on my spouse in unacceptable ways (Cassandra). 
  • I know my spouse’s inability to understand how different I am results in them imposing ideas of ‘normal’ on me that causes me major distress. 

 That is,  

  •  I don’t understand my impact on you – bad. 
  • You don’t understand your impact on me – bad. 

Oh, and as usual, I use a word like ‘bad’ and everyone thinks they know what I mean, you don’t, unless you understand my non-language world. You think it means what it says, it doesn’t, it is the visible portion of something quite different but is the best word I could find to stand in for all of that meaning underneath the surface. 

‘Let us Talk’ – that is the premise of Beanisons. It is in communication based on understanding that we can move things forward. A diagnosis is a start but it is only a start if BOTH sides of the relationship learn the strengths and limitations of how autism manifests in an individual. It takes two to tango. 

It is frustrating how often one sees on social media people pontificating about stuff, especially about other people, that they cannot know anything about. The harm they can cause is frightening and is why I very rarely comment on anything on Facebook and even more rarely try to advise. That needs to be done in a one to one situation. 

Interestingly a few weeks later (you can see how long the editing process takes on these letters!). There was a subsequent but similar posting on the same group which got a very different reaction. Much more sensible (in my eyes anyway) talking about the need for communication between NTs and autistics to work out relationship dynamics. 

And there is part of the problem, opinion is just that (especially on social media), which is why I try to always be clear that what I write here is MY opinion and I don’t speak for anyone else. I will sometimes try to generalise but I never believe I speak for anyone else, especially not Teresa. 

So, let’s change the subject a bit (Teresa did ask me to), I’ve often written on the problem of writing, both of getting the words down and of the editing process itself, the problem of not thinking in language, or at least language based on words. 

I wrote a ‘biography’ (it’s not, but what it is would take a book to explain so, for now, that’s as good a word as any). However, I am struggling to complete the editing of the first section. I have contemplated “incrementally” publishing it. 

  1. A chapter at the time 
  2. After each chapter is released, the previous ones will probably change as I always edit from the beginning. 
  3. Only ask people to pay for the book once, no matter how often it changes. 
  4. Listen to feedback, if any, and try to adapt the writing if what I am trying to say doesn’t come across how I want it to. 
  5. I think I can do that with a tool called ‘Leanpub‘, which seems to work for that model. It seems to be primarily used for technical writing, but I see no reason not to use its model for my purposes. 

When all the chapters are finished I will probably try to release it on Kindle on Amazon (Leanpub allows Kindle and general Epub version to be published as well). However, Amazon charge for new versions, so I suspect it will always be dual published because I doubt it will ever be ‘finished’. 

I’m sure I should write more on this, I know Teresa wants me to, but I can’t think of the words, so I will do another edit of the book and start the process and you can see it in action (if you want to ????).

I know I’m not a writer in the conventional sense of the word, if I were to express myself in a way that felt like it was me, then I have no idea what that would look like. Each word would take a book to explain and every time that word was used its meaning would change and need a new book of definitions and explanations. 

I know what my patterns feel like to me, but I can’t paint a picture in paint or words that would describe the patterns 

Do, I give up trying to write (books or blogs) or do I just keep on trying? 

Giving up would be so easy, but, … 

Postscript 

I have, at the time of this edit (24-Oct-2017, so five weeks after the first draft of this letter), managed to edit two chapters of the aforesaid book. I will try and get a few more done tonight at The North and see if I can get this Leanpub model to work.  

The fact that this letter is still in edit after so long and the previous week’s has just been published, shows just how hard this language malarkey is for me. 

The Bean, The North, Fri 15-Sep-2017 

 

Letter from the North Fri 8-Sep-2017

Trouble and Strife 

Teresa is originally from London and although not a cockney, I felt that the cockney rhyming slang for ’wife’ would serve double duty for today’s letter.  

However, my sense of humour may not be yours so, for clarity, ‘that was meant to raise a smile’. 

I am being so careful because this was not an easy letter to write and it was an even harder letter for Teresa to review. 

Being aware of how my autistic reactions to ‘normal’ situations look to neurotypicals puts me in a difficult position. Do I respect the sensibilities of the NTs, do I say (write) that yes, they have a point; yes, I see that they don’t understand; yes, if I persist in explaining they will get upset, angry or just bored? 

Well, that is what I often do, it just makes for a quieter life. The problem is that my frustration at the injustice of the situation grows as more such situations occur. At some point, it will explode (I will go into meltdown), often over an incident that really is trivial, even for me! 

So, I’m going to try to dissect an incident and explain what was happening in my world. It was uncomfortable to write, it will be uncomfortable reading – it was for Teresa –  but it is only by going through this process in private that, as a couple, Teresa and I are able to reduce the number of times I explode (meltdown) over what seems, to her, to be a trivial incident. Making it public in this case is about trying to help increase awareness of just how different an incident can appear from these two different perspectives, and the consequences of not understanding (by NT and autistic). 

As much as I can, I will try to be even-handed, to explain where I think an NT view of the situation would differ, to explain where I realise that such a difference exists and what that means to me. 

Not all autistics are aware of the ‘why’ NTs have such a different view, or indeed that they even do have such a different view of things. On the other hand, there are NTs who don’t understand (and/or don’t believe) that autistics think so differently. In the end, I believe there’s blame/lack of understanding/responsibility enough for all of us to share 🙂 . 

So, this week ended with a row between Teresa and myself and the fallout is always a wipe-out for both of us, though for very different reasons and with different symptoms, neither of us come out the other side (of the row) well. 

As a rule, I don’t tend to look deeply into our relationship here, especially the bumps on the road. We did use to do some of this in another blog, Life in a Mixed Marriage (REF) but, for Teresa, that project has moved to the back-burner for now, which means this is the only medium I have to try and explore this stuff.  

Hmmm, I’m sure that could be viewed as a criticism of her, it isn’t, it’s just the way it is.   

Therein lies my dilemma.  

Do I work overtime trying to spot when what I say may be misunderstood and cause offence, or does the listener/reader do a bit of work and understand that, being me, I am just stating a fact with no hidden agenda (see the news article I referred to last week when the friend ‘understood’ no offence was intended)? 

It is a dilemma and I know from personal experience, that the majority of NTs would say it’s my job to respect their feelings and want to teach me social skills so I can achieve this for them.  

I rarely (if ever) hear them saying that it’s their job to respect my feelings, and so the imbalance starts. 

Anyway, to continue:  

I can’t explain to you why, but I can say that the pattern of this particular incident is the pattern of the biggest stumbling block Teresa and I have in our relationship and has been MY biggest stumbling block in all my relationships – emotional and other. So, it does seem worth exploring. It is absolutely not a criticism, it is me examining why I do what I do and why it seems to cause such difficulty to the NTs around me. 

Again, I am sure there are many who would say ‘well you are the common denominator Bean, so you are the problem.’ I’m not stupid, I realise that, but as discussed in a recent letter, you need to apply the ’can’t vs won’t’ test before you judge whether, as the common denominator, I am responsible in some way – or whether I am the common victim? If we look at Karpman’s drama triangle we might take a moment to consider where you and I fit into that model. I like Transactional Analysis (TA), it is quite revealing of the way that I have to work out the rules of social behaviour I encounter in the world around me. TA actually does this and is, I find as an autistic, quite effective in explaining why so many of those rules don’t make sense at face value. I will explore the whole area of TA in another letter. 

The bottom line here is that I do understand how the way I am affects my relationships with the world around me and I use that knowledge to try to make my relationship with that world more harmonious and accepting. 

However, me making that effort does NOT change who I am, and I have to ask the question, who decided that the responsibility for understanding and adapting was mine alone? 

So, no lectures please, this is about learning and understanding, I know this is one-sided, I know it makes no sense to many of the NTs who might read this, BUT that doesn’t make it wrong, it just confirms how different I am to your experience of yourself and others like you. 

How did it start? Well, we will both have different opinions on that but I can only talk about mine and in order to look at that, we must go back in time. 

As you read this next section please remember that for me, whether it is like that for you or not, problems are rarely trivial, they are invariably major. I don’t have a lot of points on the scale between ok and disaster, so whilst the words may seem to be low key, the emotions behind them are anything but. 

It’s all about oil, heating oil, the sort delivered by tanker.  

I’ve lived in houses heated this way since 1991 (so over 25 years), I know how I work with the stuff, I know what mistakes I’ve made and what I’ve done to sort it. I know what lessons I’ve learnt and what rules of thumb I use to try to prevent me making the same mistake again, I worry about this stuff, I try to get it right, not getting it right is a problem for me.  

  • Letting the tank run out – problems of air and rubbish from the bottom of the tank getting into the pipes and thence into the boiler. Having to pay to get the problem resolved, having to learn how to resolve it myself 
  • Letting the tank get low just before Xmas and no oil company will deliver until after the new year. Having to get in the car, drive to the depot, buy ½-doz (well four to be strictly accurate) plastic barrels and have them filled with the oil. Drive home and somehow lift each heavy barrel and get the oil from the barrel into the tank. Realising that this is such hard work and buy an oil pump so it’s easier the next time. Yes, there was a next time and yes, the pump worked brilliantly and I already had the barrels. Neither pump nor barrels came to the house we live in now – part of me trying to cut down all the stuff I have for ‘just in case’ because we don’t have the space to store it ☹. I need my ‘just in case’ stuff and yet have sacrificed a lot in the interests of domestic harmony. 
  • Ordering a tank full and getting one only partly filled because they asked, ‘how much’, I said ‘fill it up’ they then asked me to estimate. The estimate was then the exact amount they delivered. I wasn’t good at estimating. I learnt to tell them something equal or greater than the capacity of the tank – then they always filled it up. 
  • Not bothering to monitor the price of oil and instead refilling at a time when the price was high, when I could have done it for MUCH less if I’d chosen a different time of the year 

So, here we are, in Pendeen, I have no backups, without oil we cannot heat the water because we have no hot water tank (we did in my previous house, so I could use an immersion heater). 

So,  

  • I monitor the tank level closely, which is difficult because the level gauge is dirty and hard to read at the top and the bottom and so judging how low it is, is difficult. 
  • I monitor the price of oil, I monitor our usage of oil and I try to ensure we have plenty of oil to ride over peaks in the oil price. 
  • Every time I go outside the back door, I see the oil tank and I worry. 

However, Teresa also worries about the cost of the oil. I get that, but we always use it so it’s always going to be a cost, albeit the cost comes in lumps. So, I try to be sensitive to her worries and put off ordering a new tank full as long as I can even though that makes the actual “lump” higher because there is less oil. It doesn’t work for me but does for her, so I accept this. 

Does Teresa check the oil? Of course she doesn’t, she treats it as continuously available, she doesn’t check the gas even though our gas comes from cylinders. I worry about those things and she is able to treat them as always on. I don’t mind that, but it does put all the responsibility for not making a bad judgement on my shoulders. I didn’t say that Teresa puts the responsibility on my shoulders, that’s what I do, it is how I am. 

So, I’ve let the oil get as low as I dare, I am terrified it’s too low, I can’t see from the level and I know anytime soon it’s going to be colder and Teresa or I will want some heating – I get up at 5:30am, I don’t like it when it’s cold and I do like hot water to get washed and shaved with! 

So, I asked Teresa to get the oil filled up. I had already judged that the oil prices were low and in any case, we just had to. 

So JDI (Just Do It) – just ring up and order a tank full. Teresa is at home, I am at work, so it’s easier for her to play telephone tag. 

What happened? Well Teresa took control, rather than doing just as I asked. She asked them how much it would cost for 1000 litres, I don’t know why, it costs what it costs. She then ordered a fill-up. 

Guess how much they delivered for our ‘fill up the tank’? Exactly 1000.0 litres and when questioned, the driver insisted that was a fill up, which it wasn’t. Why can’t people just admit when the they do something wrong and fix it, no big deal. 

The bill was put through the door but Teresa was busy and didn’t notice. The next day she did see it said only 1000 litres but wasn’t worried because that was ‘enough’. I got home and asked if the oil had been delivered yesterday as she had said it would be. I wasn’t micro managing her, just trusting which is why I waited a day for her to let me know. She said, ‘oh yes’, I asked where the receipt was and she pointed to it on the kitchen table. I saw 1000 litres and I realised what had happened. I was angry, my management of the oil had been usurped and nobody but me cared. Teresa didn’t, she hadn’t thought that 1000L and ‘filled’ were different enough to worry about, the delivery driver didn’t care, the oil company didn’t care. The only person bothered was me, so, clearly, I must be wrong to be so upset because nobody else is. Except all the ‘else’ people are NTs and assume their reaction and mine must be the same – no big deal. 

I snapped, went out (slamming the door) to check the level in the tank. It was clearly not full. Close, but not full and full is full it is NOT nearly full. Was I angry with Teresa, yes, but only indirectly, I was angry because things hadn’t happened the way I needed them to and now I had to sort it out. Did it need sorting? Well that depends on your point of view. For Teresa, of course not, but for me, absolutely. Who is right? Well Teresa for Teresa, and me for me. 

From that moment onwards, all Teresa wanted to talk about was how she felt about me being angry and that I needed to accept it was wrong of me to get angry (which indeed it was, no argument there). 

All I wanted was for her to understand was how important getting the oil refill was and how much it mattered to me that she, as my proxy in talking to the oil company, made sure that what they did was how I wanted it done and if they failed (as they did and they do from time to time) get it fixed rather than shrugging shoulders and leaving it for me to find out and effectively saying ‘it’s ok, what’s the fuss?’ 

So, here we have the dilemma. I am bothered by the initiating event 

  1. Get it right and order what I asked (fill) and don’t mention quantity because I know what happens when you do 
  2. If you get it wrong or they get it wrong, realise how devastating that is for me and get it resolved before I find out. 

Teresa is upset because I was (in her terms) unfairly cross (the fact that I was cross at the whole situation of which her part was only a part, is, unfortunately, invisible to her). She can’t get past her upset and logically cannot see the cause and effect issue that is bothering me.  

This, in its most general sense is, I suspect, at the heart of many an autistic vs NT conflict and the reason for poor resolution of that conflict. 

So, it is with us as a couple ☹ 

Remember, as an autistic, obsessing (perseverating even – Teresa thinks this could be a Bean language mangling word, it is isn’t, it is there in the dictionary and is often used to describe some aspects of autistic behaviour) is something we do well. Being sequential in our processing is also something we do well. I know Teresa is upset at how I behaved, I know I could have done better. BUT, I need to solve the ‘it shouldn’t have happened’ issue FIRST, and then move on. Teresa has already moved on. 

Initiating event => My Response => Her reaction to my response 

I have to resolve the initiating event, and I can’t move on to the next part of the ‘row’ until I have. It’s not that I don’t respect that we need to deal with the subsequent events, it’s just I need to fix the first one first. Teresa is trapped in her reaction to me and I am trapped in my reaction to the initiating event. We are in different places and neither of us can move (me forwards and Teresa backwards). 

How does it resolve? It resolves as it always does. Teresa has moved on from the initiating even and is unable to return to it, so I have to give up on her engaging with me about it. As a result it ‘feels’ to me that she is unable to take the initiating event seriously and I just have to accept that (distressing as it is to me) and move onto dealing with her upset. 

I resent this and it makes me even more determined that the next time the pattern repeats I will stop it happening and yet it does repeat and does happen again. In the end, what bothers me is that a ’bothering event’ is not recognised as such at the time by most (if not all) NTs and so, like Teresa, once they have moved on they are as trapped in subsequent events as I am trapped in the initiating event.  

The result is that discussion (row, …, call it what you want, for it is many things) is about her reaction to my reaction and never about why it started. 

Using my words, it stinks, it’s awful and it feels unresolvable.  

To solve ‘my’ problem, I could become incredibly controlling, make Teresa tell me all the details of every event with the oil people; get her to check the level when the driver is delivering; check his paperwork; ring them up to tell them they did it wrong. That is what I want, what I NEED to do; or I trust her to deal with my needs in a way that works for her.  

The problem is that I understand that I need to trust her, and I try very hard to do so, but I do not handle that trust being broken (my perception) and being told it wasn’t, that I’m being unreasonable.

Micro-managing her is unreasonable, trusting her is reasonable – I’m in the wrong if I do and I’m hurt if I don’t and wrong if I complain. 

On top of all of this, there are the communication problems of someone obsessed with words and language (Teresa) and someone totally pattern dominated (me). 

She just cannot handle the pattern stuff, she doesn’t even understand what it means and in trying to understand she uses words which don’t work for me, it can be a Catch-22 problem.  

I can just about cope with words but I don’t use them well, they rarely mean to you what they meant to me and as a result all the communication we have is with Teresa speaking her native language and me working in an alien one. 

  1. My world as an autistic is very different and hard for an NT to understand 
  2. Because I am not language based, explaining this difference in a way that any NT can understand is impossible unless they also happen to be a strong pattern based person 

This is, and can only be, a recipe for disaster, and it inevitably ends up requiring me to hide this difference so that I don’t cause Teresa even more distress than I already have. I do that because I love her. I do it at work because I need the job. 

BUT, it means that I am not being allowed to be who I am so, for much of the time, I go hide inside myself – and then Teresa gets upset that we don’t do anything together (socially). But how can we do things together when I need time to be me and I get so very little time when I’m not under pressure from the world around me to conform to their idea of normal? 

So, life is difficult, our relationship, no matter how hard Teresa tries (and she does try very hard) and how many times she gets it right, will always hit a brick wall when I am too tired or too stressed to do the translation, to fill the gap between what she can and can’t do. 

So, what is the lesson here? 

  1. I am autistic, I will persist no matter the human consequences (to me or anyone else) to resolve what I need to be resolved 
  1. What matters to me, matters to me, it’s not a minor thing, it’s a life and death thing, it’s the end of the world. If I could have reduced it to ’no problem’ I would have done. When I can’t it is important, however trivial it may seem to others 
  1. Teresa is an NT which means, 1) and 2) do not make any sense to her and yet she still tries, I have no idea why she perseveres and love her for that persistence. 

Teresa often comments about justoposition (that should probably be juxtaposition ????) in these letters yet, for me, I’m finished with the first part of this letter and moving on to the next which is just as important to me, even if it may seem trivial to you in comparison to what preceded it! 

So, here I am and whilst you will have no idea, I am writing in my notebook. Why? Life is much easier starting from an electronic version of these letters rather than transcribing from a handwritten version – that’s a difficult, time consuming task.  

So, why am I doing it this way? Because writing on a keyboard in the North just wasn’t working for me, I found it very difficult to focus. 

This (writing in a book) is what I did when I started writing over here 5 years or so ago and I wondered whether going back to the old way, despite the disadvantages, would help. So far, yes, however the proof of the pudding is how easily I handle the transcription process! 

Update 

Following on from the first part of this letter, during the following week Teresa has ordered a carpet for our annexe. In my past experience (over 20 years ago) I have always had carpets treated to reduce stains (Scotchguard?), so I said that was what we needed. Apparently, things have moved on and it’s no longer done. At first Teresa just accepted this but on reflection, she returned to the shop to ask for more information and was all primed to discuss it with me in the evening. As soon as she told me it was no longer needed, my reaction was ’ok’ and that was that. It was a non-issue for me, I didn’t need any more details. 

The next morning as I drove in to work I realised that Teresa might have been confused by my apparent dismissal of her efforts (to get more information), particularly in the aftermath of the ‘oil’, and so I sent her an email, quoted verbatim here:  

I may not have shown any appreciation for your extra checking on “Scotchguard“, however: 

  1. Why would I, that was “normal” behaviour for me and hence, “shrugs shoulders”, why wouldn’t you do that checking. 
  2.  I process slowly but I do (now) realise it might have felt unappreciated, it wasn’t. 
  3. I accepted the no Scotchguard so quickly because I do that, I can “spin on a sixpence” sometimes, again it did not indicate that what you did was wrong! 

 p.s. wrong in this context includes “misjudgement”, i.e. just because I accepted no Scotchguard didn’t mean your judgement to go back and find out more was wrong, quite the opposite. 

 That is, use of the word “wrong” is really just a placeholder for something that isn’t 100% correct, that is 

  •  100% correct = right 
  • 99% correct = wrong 
  • 0% correct = wrong 

 It is just, that is how I translate the concept (0-100%) into words (right/wrong), language for 1-99% is not “precise” and hence not available to me to use because I need precise language even for imprecise concepts.  

 The concept in question will often be imprecise in my head but the language I can select to describe the concept must be precise. Ditto the language used to explain the concept to me must also be precise. 

 Using precise language to describe an imprecise concept requires the use of multiple examples which is why I will often explain in many ways and ask for multiple explanations even though both sets of explanations appear to be indistinguishable.  

 The important thing is that a lot happens in that space between 1% and 99% happens for me too, it’s a language problem – you have loads of language to cover that range I have none and the word I use for 0% is my default word for that 1%-99% and hence our difficulty. 

Postscript 

I added that last section to highlight the fact that I get how difficult it is to understand why I react the ways I do, why, for me: 

  • you get it completely right, in which case there is no credit, because why should I compliment you on the fact that you are breathing! 

Or 

  • You don’t get it completely right, in which case it’s a total disaster and you are a terrible person (at least it will seem like I think that) 

Ignored if you get it right and condemned if you make the slightest mistake! 

Who would live with an autistic who treats them so badly? 

I do sometimes wonder and indeed say that to Teresa. On the other hand, I would also say: 

Who would live with an NT who so totally ignores who you are and demands you behave in ways that are totally alien. Surprisingly Teresa doesn’t tend to ask me that question 🙂 . Oh, and if you think that statement is a dig at Teresa then you need to go back to the beginning of this letter and start again, it isn’t 🙂 

Of course, the reality is that there is good and bad on both sides and on balance I’d rather be with her than without. She would call that ‘damning with faint praise’, I call it a massive complement. 

This letter has taken six weeks of editing, when I said “this was not an easy letter to write”, as usual I didn’t mean ‘a bit difficult’, things are rarely ‘a bit’ anything with me 🙂 .

The Bean, The North Fri 8-Sep-2017 

Letter from the North Fri 1-Sep-2017

In the news?

So, I’m back in my new usual spot here in The North, and I’m Ok with that; not happy, I doubt I ever will be, but Ok.

I saw an article on the BBC news this morning (or was it yesterday, I forget) on how an individual discovered art as a way of working with his autism.

The man from the NAS (National Autistic Society) talking about it never missed an opportunity to name-check the NAS, which seemed a bit over the top. Well it did to me, but then they and I disagree, and I’m inclined to be somewhat critical of anything they do. In other words, I understand that I am biased. However, entirely unprompted, Teresa thought the same about the name-checking, so I don’t think it’s just me.

Anyway, back to the article. The tone was about those who need support and help, i.e. those are already in the system; I remain convinced that there are a lot of us who are outside the system, who in many cases don’t even know what they are, and are just coping. I’m also not convinced that the best people to support autistics are non-autistics!

These letters are very much for them, people who are considered a bit odd, but have no need of, or desire for, medicalisation.

So, that BBC article knocked me sideways because it feels like there is a whole industry that is invested in autism being a problem and people with autism needing diagnosis so they can get access to services and support and then there are those (non-autistics) delivering those services.

I can’t fight that medicalisation model, I have no power or influence and the biggest organisation in the UK (the NAS) was perpetuating the model on national TV.

Oh well, I’ve cracked my problems with getting my Arty FPGA board working last weekend, which was three-day weekend and I was happy with that.

And that’s it, I could go on for another page or two on how and why the TV article knocked me sideways and how long it is taking me to recover, but Teresa would say ’enough Bean’ and she’d be right. So, I shall refrain, muttering my protests …

I’m sure there’s a lot more I wanted to write, but it’s all disappeared from my mind.

So, back to my theme this week ‘In the News’. I regularly read the BBC News website and when an article catches my attention,  I save the link.  Since the BBC News had already attracted my attention, it seemed like a good idea to explore some of those links.

As always, my opinion is my own and, being autistic, it may well seem rather extreme, unusual and ‘wrong’ to you. Sorry about that, but I think and feel the way I think and feel.

The following two articles were both about missing people. In no way would I minimise the stress those affected go through and in no way, would I think that I understand ANY of the background or what happened. All I have is what I read in the news and I am sceptical that that is all there is to it.

In both cases there seems to me to be issues of neuro-diversity. Whenever I see words associated with mental illness – e.g. Bi-polar or words that are often used about autistics, even when the autism word is not used – e.g. ‘gifted’, I worry. There is a long history of misdiagnosing autism. ’gifted’ can, and often does, mean that the individual is so good at hiding the effect of autism that everyone just sees the gifted and nothing beyond that.

Anyway, here are the two articles:

First, on 25 August 2017 there was an article entitled ‘ My partner vanished without warning. I had to find him‘. A 28-year-old man left home and didn’t return. Apparently, he texted saying he didn’t want to be found and the article says “there was concern because he’d been diagnosed as bi-polar”. In my experience being diagnosed as bi-polar doesn’t mean you are, but it is a warning sign that neurodiversity is happening. I can imagine that article being about me, I can easily imagine doing that, indeed for short periods I have done exactly that. Fortunately, eventually, the missing person was found. The reason, speculated on, for his going missing was ‘because of the upheaval of having a new baby and moving house at the same time.’ How stress affects someone like me is not how it necessarily affects others and when neurodiversity is involved an ‘NT’ explanation rarely works.

Whilst I was updating my rough notes on this letter I came across another missing person article, there are rather a lot and I know it is incredibly distressing for those involved.

14-Sep-2017 Andrew Gosden: The boy who disappeared – BBC News. This was an article about a 14yr old boy who disappeared on 14 September 2007, 10 years ago at the time of writing this letter. Again, whilst not diagnosed, reading the characteristics of the boy, I would suspect neurodiversity being a significant influence on his disappearance. Reading the article, I was reminded of the book ‘The Curious Incident of the Dog in the Night-Time ‘ by Mark Haddon ()

Again, I know nothing of the world of the boy and his family and I’m just looking at a news article, but again it reminds me how I do things, how I worry about things that make no sense to most people and they are then surprised by what I do.

I often hear in the news how some people do things which are a surprise – like these disappearances – and I wonder if sometimes what we are seeing is that not everybody works with within the same emotional and mental framework and when you don’t, people think you are over reacting, making mountains out of mole hills, …

A friend of ours, who in retrospect was clearly autistic, killed themselves. They were diagnosed with mental illness because they couldn’t handle noise from a neighbour. I can totally put myself in their place, I know just how totally disabling that can be and how death can seem to be the only solution. I have moved house, twice, due to noise disruption that the rest of my family couldn’t even hear. At times, I have become totally obsessed by noise to the point where it has taken over my life.

Accepting diversity means more than tolerating a man in a frock or a person in a wheelchair or someone’s race, religion or ethnicity. It means being willing to accept that they think differently, react differently and can have very different motivations.

AND, that is OK.

A few more bits in the news that caught my eye:

29 August 2017: What I wish I hadn’t said to my colleague. I love the statement early on ’Basically, I was born with the social skills of a used teabag.’, yup, tick! The article illustrates how easy it is for someone who is neurodiverse to commit social faux pas (at least a faux pas as defined by the majority). I loved this article for the author’s friend who ‘understood’ and didn’t take offence.    

28 August 2017: Unearthing the legacy of Harvard’s female computers. Far too often the contributions of women are ignored, especially for the work they did during the second world war. The inbuilt assumption of male supremacy in anything technical is so entrenched that as males we are rarely aware that we do it. I am always reminded of Shirly Adams, the person I competed with to come out top in maths at school. I recall it was 50:50. Her gender was irrelevant to me, she was just ‘the competition’ ????. I work at the engineering end of computing (rather than Web or IT) and there are far too few women present. There is a lot of talk about addressing this in schools and from time to time we have girls paraded in front of the cameras as the ‘new wave’ but the reality is that society continues to view science and engineering as male. I watched a documentary on the Cassini mission to Saturn (just finished) and many the lead engineers were female, brilliant.

I love space and yet I didn’t know that, how could I not? Well look who is the big science person on TV – Brian Cox, if you see him all the time then you cannot help but assume it must be a male thing.

31 August 2017, Labour’s Kezia Dugdale ‘was outed as gay against her will’. We are now back to the problem of othering! The concept of ‘outing’ is always applied to those who are different, the sexual and gender diverse, I’ve never heard of a heterosexual male or female being ‘outed’.

I originally wrote about my Chilli (see last week) at the beginning of this letter, but Teresa felt it should be an “oh and also” item, as the news often does with a “and finally” piece of fluff. So here is the ‘and finally’ that should be at the start because that’s the first thing I thought of and I am a very linear sort of person ????

And finally, that Chilli I talked about last week went through a metamorphosis. I got my recipe wrong and cooking the beans on their own didn’t work, they would have ended up overcooked once the chilli itself had a slow cook. The original idea was to cook the chilli slowly along with the beans, not the beans on their own. So, I put those beans aside and started again. The new chilli took about 12 hours in the crockpot (slow cooker) but was very nice.

I used the ’hot’ kidney beans plus some left-over pasta plus a bit of tomato, …, and that was a lot of lunches sorted. No waste in our house, I can (and will) use anything for my lunches!

Postscript.

The ‘conventional’, those who consider themselves to be ‘the norm’ don’t have to announce their sexual and gender preferences. Neurotypicals don’t have to be diagnosed and declare themselves. The neurodiverse have to justify thinking differently and get medicalised because they don’t follow ‘the rules.

I have said and will continue to say – respect for diversity is respect for people, for individuals, we are ALL different, there is no such thing as ‘normal’, we need the right person for the right slot in the world doing the right thing and we don’t need labels identifying those outside of a socially constructed ‘normal’.

The Bean, The North, Fri 1-Sep-2017