Month: August 2017

Letter from the North Fri 4-Aug-2017

A different way of thinking

Normal service is resumed and am here at THE North. Tomorrow lunchtime we are having our anniversary Lunch at the Gurnards Head, postponed from Monday when Teresa was ill (see Monday’s letter) 

On Monday Teresa got the results of her Counselling Diploma course – she passed (of course) which means she is now qualified to practice as a therapeutic counsellor. I was pleased for her but it was also hard for me because I studied alongside her for all but the last few months when I had to leave. As a result I didn’t display to Teresa the joy she had every right to expect ???? .  It is on that thought I’d like to write today. Not me not being supportive although that does need writing about, but about me, well it would be about me, that’s one of the battles with autism I have every day, I know it’s not always about me, but it’s hard to see that.

Reflecting on my recent experiences in adult education, it is interesting to think about other people’s expectations and understanding of what it takes for an autistic to undertake any sort of education. I’m talking about adult education here, as my knowledge of school is somewhat out of date, except as a parent.

I have tried to describe in the ‘Warwick’ letters what ordinary day-to-day life is like for me, but work, learning and other formal environments carry with them a whole additional set of problems. 

All autistics are different and this is my story, but there is often a lot of overlap between us and so my insights and observations may also be relevant to others on the spectrum and in other parts of the education system. 

I don’t know how much issue people had with my gender, it may or may not have affected some of how they reacted to me, I don’t know know how much of my height, weight, skin colour and race affected people. 

But, it was very clear that one of my issues was around communication.

Temple Grandin, who is primarily a visual thinker discussed 3 styles of thinking that people may use, usually elements of all three. I (may) have mentioned this before, but quickly:

  • words – verbal
  • pictures – visual
  • patterns – maths

I am a ‘pattern thinker’ (and nothing else, no visual or verbal for me). So, I have to translate into and out of words – and most courses nowadays are about words (even the technical ones). This means I am not only disadvantaged in terms of the amount of effort I have to use just to cope with the required level of translation, I am am also discriminated against because teachers (educators in general) by the nature of their profession use words, they have an inbuilt bias that words are key. Even when they understand autism, their understanding is that many autistic are better with pictures. However an understanding that you can do neither but still want to take part in mainstream (as opposed to special needs) education is a tough sell. 

When I was at school and indeed University, science based subjects were examined based on technical rather than literary content. That is essays didn’t exist for things like maths, physics, chemistry, …, that made life easy for me in those subjects. I understand there has been a major shift in education and now essays are common across the board. That emphasis on words and not facts, means people like me are at a disadvantage. Even if I thought in language, processing delays would still limit the instant call/response that occurs in a classroom. In that sense, the OU (Open University in the UK) had it right for me. I studied sociology with them and, because it was distance learning, I was assessed on my writing, but I had time to formulate my writing. It may have been more difficult and a lot more time consuming than for most people, but I wasn’t being judged on the process I used to arrive at the final set of words I was being tested on, just on the final result. 

Counselling being a words (talking) therapy, tutors seem, to me, to assume that a particular sort of facility with language is dis-proportionally important in the learning process. Somewhat forgetting that the “talking” in talking therapies is the client not the therapist! In addition, the obsession with “portfolios” (writing) as proof of learning is a particular obstacle for me and it seems to be an increasingly common tool in a number of areas of adult education.

In my day-to-day experience of life, language based communication is not that easy. I have to ‘lie’; that is, present an image of fluency and quick response that is not real, but based on patterns of communicating I have learnt. It’s not fair or ideal, but it’s necessary for me to function at work and play. When you see a quick response in me, what actually happens is that I have worked out in advance what I would say in response to that conversation and since I have that response ready prepared I can just let it out seeming to be taking part if a fluid exchange. Sometimes it’s not quite a perfect fit and comes across as somewhat clunky. But, it’s the best tool I have – and it caused me no end of grief on that counselling course!  

Which brings me back to a recent letter when I discussed diagnosis and particularly why? Diagnosis frequently crops up and is “needed” in education, primarily to force someone to provide support for your difference. 

It is the impact of this idea that I wanted to explore in this letter.

The solution offered (for people like me) is invariably ‘reasonable adjustments’. A pejorative phrase if there ever was one. I don’t need adjustments from what you think is right for everyone. Who gave you the right to decide what is ‘normal’ and who isn’t and therefore needs adjustment? Why are you the arbitrator of reasonable? 

I need what is right for me. He/she/they need what’s right for them, we are ALL individuals, you really cannot assign ‘need’ using labels. Trust me, autistics are no more alike to one another than NTs, men, women, the English, French or Americans, …

I have been given ‘reasonable adjustments. It was a very subjective term. There was a pre-prepared list of what was reasonable. Reasonable in this context seems to mean what an “expert” feels to be reasonable, not what the autistic does. In teaching and exams (which have different problems for me), the phrase ‘reasonable adjustment’ is used as the solution to all difference/diversity (but usually called a disability, I reject that word). A hammer is a reasonable tool, it works well for a number of applications, but it’s a useless for repairing clothes. The right tool (‘adjustment’) for that person in those circumstances should be the answer but I am afraid it isn’t, laws don’t work that way.

Teresa tells me these letters are getting “angrier”, she may well be right, but what I think is happening is that the closer I get to the injustice of how I find myself treated, the more I realise how unacceptable it is and being “nice”, “tolerant” and the effort I put into understanding the problems NT have with me is masking the lack of effort put in by NT’s to understand my problems and a lack of fairness and balance does make me angry,

Whilst I have been talking about autism, this problem, of diversity and how society deals with it, crops up in all sorts of areas:

Whilst I avoid the diagnosis word, I do have experience of a number of areas of diversity where a “diagnosis” could potentially be to my advantage:

  • I am in my 60’s – age.
  • I use a stick – a physical disability.
  • I am complex gendered, which for most people is the same as transgender..
  • I am autistic.

All these (and many more) are areas where there are laws against discrimination and in some cases reasonable adjustments are required in areas of work, education and indeed in society at large. 

There are two problems here, the first is that “diagnosis” word, that is you need to be marked out as broken in some way. Broken in this case means “not like us”.

The second is that I know from experience and observation that unless an individual or organisation is really not very aware, they can discriminate as much as they like so long as they use the right sort of words. (See this article and this on ‘cultural fit’, they illustrate a common ways of discriminating but not breaking the law). 

‘Sorry you didn’t get the job, your profile wasn’t a good match for our company’, instead of:

  • you are too old,
  • we don’t like men in frocks,
  • we don’t like unusual needs (aka autistics)
  • never mind race, gender and religion!

The law protects at a gross level but in reality, at an individual level, it’s about people and unfortunately there are nice people and nasty people and if you come across a nasty one, then the law and diagnosis/labels are of little use. I use the word ‘nasty’ in a Bean way, it is a sense rather than a definition, ‘nasty’ can be deliberate or accidental, it can seem to others as ‘nothing to make a fuss about’ yet for me it can be (and has been) devastating. 

And that’s the problem at school (college or whatever) or at work, what do you do? 

  1. Fake it and hide it completely so they never know you are ASD, gender diverse, … The problem is that it’s fantastically hard work and stressful and in some cases (e.g. race, physical disability, …) impossible.
  2. You compromise and trust they will compromise too – they often don’t because, especially if they see that when you compromise, you are demonstrating your understanding of their need for you to be reasonable and accept their ways are the right ways. 
  3. You insist on your rights under the law – good luck with those reasonable adjustments and discrimination claims. 

It is my experience that the best way to succeed is 1). 3) rarely works and 2) is a lottery. The problem for me is that I cannot accept 1) as an option despite it being the easiest way to achieve what I want. Indeed I have followed option 1) for most of my life, but in recent years I have rejected it as I have come to realise how hiding who I really am reinforces other peoples’ perception that they don’t need to change because there isn’t really a problem.

I wish I lived in a world where give and take works. I am lucky, it (mostly) does in my work place and community, however I have also experienced just how difficult it can be in a place where that is not the case. 

I wish I had an answer, I wish I had better advice other than giving in to other people’s prejudice and yet, if you NEED to succeed that may be the only answer, not one I can live with but I understand others may be more willing to or not have a choice.

I am a social autistic, not because I am good at the social stuff, I’m not, but I am motivated to put myself out to try and make the social stuff work, that can make my life easier in finding a compromise to make things work, so long as the others are willing to make a bit of an effort. I’m fine with making the larger effort. I only struggle with those who won’t make any effort at all.  

For a non-social autistic it is a much harder problem as they need others to be reasonable and make the effort and they just don’t see the need. Their legal rights are irrelevant, their problems are just too difficult for the NTs to understand and they cannot see any benefit for them in making an effort themselves. I am aware that things are changing, but the reality is that beyond childhood, acceptance of neurodiversity occurs in islands.

There is no answer. The reality is that, in my experience, for autism (and I suspect in many cases of diversity), there are two fundamental situations: 

  1. There are those autistics who successfully deceive the NT population. Yes, they are odd but their skills are of sufficient value that they are tolerated, sometimes accepted 
  1. There are those autistics that are unemployable because they don’t understand the social dance necessary. 

The law can be a help in both groups but much less so than you would expect/hope. In the end the world is governed by people not by laws and people will do what they do whatever the law may say. 

So what do you do? Well for me, at my age, I choose to be who I am. I compromise where it is acceptable (to me) and not where it’s not acceptable (to me). BUT I am lucky, I am very good at the job I do and I have learnt (slowly and painfully) how to hide enough of my autistic self so that others can handle it. 

Not everyone is in my position or wired the way I am, but they shouldn’t have to be, should they? In a tolerant society that believes in diversity, difference should be welcome and not tolerated or hidden from? 

Postscript

This letter has spent a considerable time being redrafted, I don’t keep count but this is revision 17 since I transferred the word document into WordPress and there were at least half a dozen drafts before that.

That’s why this and subsequent letters are “late”.

Why so many redrafts – because my language in earlier drafts would be considered inflammatory (maybe it still is) and hence I was failing to say what I wanted to in a way that others could understand.

It’s possible in “sanitising” my words I have lost what I wanted to say, but reading this final draft, it feels right. It may not say what I originally wanted to, but it does say the truth of how I feel and so is acceptable for me.

I wish I could just express myself without this complex dance, but I can’t, words are just so difficult and the world around me makes such powerful judgments based on words that I have to try and watch my step. This is me being careful.

And so we return to the topic of this letter, you can make as many reasonable adjustments as you like, but unless you walk in my shoes (well pretty sandals anyway), then how can you know they are reasonable. You certainly don’t ask me and no, for your information, I don’t take sugar.

Letter from the North Fri 17-Feb-2017

The challenges of communication

Writing this letter is, in many ways, the explanation or definition of the problem. 

This letter is not really about the problems I have in dealing with words when I don’t think in them, it is much more about the concepts behind correct and incorrect ways of talking that society imposes (or tries to impose) on me. 

I have talked to many autistics and the conversation invariably goes along these lines: 

“I get stressed when I can’t park in my usual parking space” 

“Duh, of course you do” 

“Do you find somewhere where your car door can’t be blocked?” 

“Yes, you too?” 

“Of course” 

… 

Stuff which is so obvious when two autistics talk has my wife, Teresa, sitting there perplexed and/or excluded. You might think, well that’s a perfectly normal conversation, but then you read “stress” and interpret it as beig ‘a bit bothered’. You typically do not think:

  • failure to find the right parking slot means giving up on work for the day and driving home.  
  • going into the office and sending an email around the whole office asking the person in your spot to move their car.  

I doubt that’s how stressful it would be for you? 

I spoke to someone at work today as we passed each other, commenting how nice it was to be Friday and 3:30pm (I leave at 4 p.m.), he said something to the effect of, ‘yeah but I don’t leave till 5:30pm.’ My response was ‘tough’, no empathy, no sympathy, ‘it’s the price you pay for starting at 9:30 a.m. instead of 7:30 a.m. (8 a.m.) like I do.’

Later, in the coffee room, I apologised because I am aware that some people take offence at me verbalising the blunt truth. He just laughed, there was no offence taken (and none intended of course).  

But that is an example of the dance I must do. If I say ‘yes, your bum does look big in that’, I’m not being insulting or insensitive, I am just being accurate, it does (or doesn’t). If you want to know ‘do I look nice in this?’, then for goodness sake ask that question, don’t expect me to second guess what you really want to know. 

The upside is, if you really do want to know, I will be honest, I won’t be uncomfortable or embarrassed, your bum is the size it is, I know that, I meet it in bed every night, what is there to be embarrassed about? 

Apparently lots – for neurotypicals. How bizarre! Why do NTs have this need to tell ‘white lies’ for politeness sake? It really screws up their lives.  

So, here I am sitting in the North, NOT on MY table which I REALLY have a problem with. Not only is someone else sitting at MY table, I am having to really control myself to not say to them ‘you have been nursing the same glass for two hours, this is a pub, the table is for people who are eating or drinking, not an extension of your sitting room.’

I have a desperate need to say something, partly so I can have MY table, but also because it seems, to me, to be anti-social. I’d rather someone who was spending money in the pub and hence helping keep it open, was at the table, even if meant I couldn’t sit there.  

In my more unreconstructed days I would have said something. But nowadays I recognise that I have to be tolerant of other peoples’ incorrect behaviour. 

How intolerant of you, people may say to me. Well yes, I can see you’d think that, but then am I wrong? Their behaviour is selfish, what is wrong with telling them? Yes, yes, I know, that makes me the rude person, the bad guy; it also means they get away with bad behaviour because I would be in the wrong for stating the obvious and being honest. 

Who is wrong here, society says I am, logic says they are. My sense of right and wrong says they are. So why do I have to keep my peace. You have no idea of the struggle I have and I have every sympathy with every autistic who doesn’t exercise this level of restraint and says yes your bum does look big in that (but I love you anyway) or you are being selfish just sitting and occupying a table, worse MY table … 

I remember early on in my counselling course a tutor saying to me ‘I get you’; they didn’t, time proved they didn’t, yet they were sure they did. How can you understand my world if all you can see is what I show you? I filter my world to make it tolerable to you, I never show you the full monte, you wouldn’t cope. You think you would? Ok,  (this is an example – not about any specific individual)

  • “you are an intolerant, ignorant, idiot and you emotionally abuse me”.  
  • Still happy with the truth? 
  • Oh, you aren’t ready for me to say what I feel?  
  • Then stop telling me you understand me when I never let you see the full thing because I know you can’t handle it. 

How do I know? Through mainly painful lessons provided to me by people not understanding. 

Here is a real problem I battle with trying to explain, let’s see how you feel about my thoughts? 

  • I have given up trying to offer help to parents of autistic children, the mothers (and it’s invariably the mothers) get locked into a righteousness about their efforts that can become the most important focus and can ignore the needs of the child as a person rather than as a disability. 
  • It sometimes seems to become more about how good they are at fighting and less about how much people understand the needs of the child.  
  • The expert on their child’s condition is the child, not the professionals, not their parents, the child. Yes there is a communication problem in understanding how the child communicates their needs, but it is arrogant to assume that “I know best”, especially  if you aren’t autistic yourself. 

The comments above were heavily moderated to make them more palatable than they otherwise would be! 

Are you feeling uncomfortable yet? Or should I really lower the barrier and talk to you in my language without moderation? 

No, I won’t, it’s too difficult, you will form all sorts of conclusions about me (which you probably already have) that are not true. 

Welcome to the world of communication. I have just tried to lift the veil of what it might look like and am well aware that it is uncomfortable and that you could easily have formed some very negative opinions of me. That’s a shame, but how else can I illustrate to you the problem of just how different things are. I work to a different set of rules of behaviour than you (the NTs) do, they aren’t more or less right than yours, but they aren’t the same. 

I wrote, in an article on our Mixed Marriage (REF) blog, about kissing, I’m sure me saying that kissing is meaningless and pointless sounds awful, it isn’t, but you have to be inside my world to understand why. Use your usual rules of behaviour and I’m awful, understand a bit of my world and you will realise just how much kissing matters to me! 

Postscript 

Checking this blog later I notice that I have frequently used a phrase like “you will form all sorts of conclusions about me“, I have done this for two reasons 

  1. It is how I write, repeated phrases are an anchor that helps me hold the flow of the writing together, without this I easily get lost 
  2. Because it is true and been the cause of a lot of emotional harm. People do think they know, that they understand, that they “get me” when it is perfectly clear to me that they don’t. Surely I know me better than anyone, but far too many people, experts and parents, think they know better – they don’t. 

Bean, The North, Fri 17-Feb-2017 

 

Letter from The North Mon 31-Jul-2017

Warwick – part II

I am here at THE North (the proper North that is). It’s Monday lunchtime and our wedding anniversary. We should be over at the Gurnards Head having lunch but Teresa was poorly on our drive home and so it seemed a bit daft going out for a nice meal a few hours later when she might not be able to handle food! So, I’m here at The North, unexpectedly, but I am very happy for all that 🙂 . I will be at work tomorrow, 🙁

My original plan (when I was planning the trip to Warwick) was for me to come here when we got back as a ‘reward’ (to myself) for all the compromise I had to do to leave home in the first place, the rights and wrongs of which are considered in Friday’s letter. Indeed I see nothing wrong in celebrating our wedding anniversary (today) here in The North either. However Teresa does, and quite rightly too, she’s not a pub person, the food is good here but it’s not a restaurant and I come here every week, so coming here on our anniversary would not be special for her and apparently that matters. So, it was ME who suggested that, since Monday (today) is our wedding anniversary, we could go to the Gurnard’s Head for lunch, knowing it would be much more Teresa’s cup of tea (well glass of wine).

The only thing I asked was that rather than me driving when we go out anywhere (other than The North), which is what I always do, so Teresa can drink (seems fair to me since I get to drink every week at The North), I wanted to catch the bus/taxi, so I could have some beer which is also nice at the Gurnards Head. Teresa felt that was a reasonable compromise and so we had a plan.

The best laid plans? As I said, Teresa was poorly.

Before coming here I rang the Gurnards to cancel our table and re-book it for Saturday, that went down well with Teresa. From my point of view, in cancelling, we’d saved money I didn’t see any need to spend, if it wasn’t on the day of our anniversary. However I DO understand that is not Teresa’s point of view so I didn’t say any of that and suggested the alternative, which went down well 🙂 .

So, what to say about Warwick? It was, for Teresa, a good festival; for me, hmmm, I still haven’t worked out how I feel about festivals in this new world of mine. In the past I have been very controlling and hence had things how I needed them, but it was not very nice for my wife (this one or the previous ones). It is 7 years since Teresa and I were last at a festival – that was Warwick too and was also the weekend before we got married. Back them I was much less ‘reasonable’ and now I try much harder, but that means I no longer really know how to do a festival.

Still we have a better understanding (well I do) of Teresa’s needs and I still need to work out how it works for me, but I am getting there.

We left Warwick around 5:15pm and I was originally planning to push it to arrive here in Pendeen and park the van at The North. It was only slowly that it occurred to me that arriving around 10:30 pm (our very best ETA, without stops) would mean that I would be entering the site in the dark and:

  • The entrance is very tight, and if I can’t see the gateposts (granite, of course) then chances are there would be damage.
  • People who were camping would be asleep and it felt anti-social.

As we got closer, time got later for our arrival and so I planned to stop overnight somewhere close to home.

Unfortunately Teresa got more and more poorly as the journey progressed and so I had to work out plan B to get us home that evening, rather than stopping somewhere overnight. My plan B was to park (the caravan) in the car park next to our house. That is fraught with issues, there are notices up saying “no overnight camping”, I knew we weren’t camping, but that wouldn’t be clear to anyone seeing the caravan parked. I was breaking a rule (in my eyes), but I couldn’t see an easy alternative (well I could see a number of alternatives but they were all poorer).

We knew that Teresa’s car was in the best place for the caravan, so I could drive in, move Teresa’s car then use the motor-mover to position the caravan. That all worked well, but I was faffing around the car park at 11:30pm in the evening, terrified of being ‘caught’, or something going wrong. Teresa, being ill, went straight into the house when we got home and I had to sort it all on my own, without an NT to run interference for me if anything untoward did happen. But it all sorted itself in the end, phew. The stress, well, off the scale, knowing what was to come was bad, doign it was bad, knowing it was what Teresa needed is what helped me push through the stress and not freeze up.

This morning I had to move the caravan to The North, that all worked surprisingly well, it went back to it’s ‘proper’ place, i.e. where it was before we went to Warwick, and I finished all the unpacking and moving and here I am. You see how easy that sentence is, no sign whatsoever of how worried I was when I went into the house last night:

  • What would happen if someone parked in front of the caravan – either because the car park was full or they were angry I had put the caravan there.
  • Would I be able to turn left out of the car park to drive straight to the field – it is a tight turn and needed the road outside to be clear (and it rarely is as that’s where the village shop is)
  • If I couldn’t turn left how could I turn around – worst case at Mount Misery roundabout which is 10 mins drive away outside Penzance
  • Would there be ANY space in the field
  • Would there be MY space in the field

It is not a good idea to assume that any sentence I write or thing I say is exactly what it seems to be as I rarely actually explain all of what is going on and how hard I have to fight to avoid paralysis and inaction.

It occurs to me, as I review Friday’s Letter, (Link) and the list above that it’s possible to view the concerns listed as whining, or just being pathetic. That I should “get over myself”. I realise I could get ‘lectured’ as to why none of those things is really a problem.

ALL of that would be true, I do actually understand that. Even whilst having those worries, feelings and panics, I also understand that in the view of others that they aren’t the end of the world – which is what they feel like to me.

So, yes, I use my intellect to balance my emotions and come out with what most people would consider to be ‘normal’ behaviour.

The whole purpose of Friday’s letter was to highlight the fact that whilst I may appear to be behaving and reacting ‘normally’, that is not what is really happening and the effort involved in behaving in what most of society would consider to be an acceptable manner is not trivial, indeed can be so debilitating that I often cannot undertake activities that I want to do.

The issue here is really diversity. In my world, those worries are quite normal and instead of dismissing them as trivial, society could actually agree and adapt around them and not leave me feeling that there is something wrong with me.

It is not having to deal with my problems that I have an issue with, it is the assumption that somehow it is ME that has to learn to hide it rather than society learn to accept it, as I have to accept their views.

When autistics (especially children) are taught social behaviour what they are actually taught is NT social behaviour. Nobody teaches autistic social behaviour and nobody is expected to learn it!

Hence my concern is that people don’t confuse me being honest about the actual thoughts I have and the difficulty I have in adapting to an NT social view with me not understanding that it is necessary for me to do that as I want to interact with a predominantly NT social world.

The real issues are:

  • Don’t assume that teaching me or my learning such social rules is the same thing as me understanding them innately as most NT folks do, or that learning them is as easy for me as it is for NTs.
  • Don’t assume that all the responsibility is mine. Your social rules are not better than mine, they are different and if you want me to learn yours then surely it is important to set an example and be willing to learn mine? I am reminded of the stereotypical Englishman abroad who just speaks English more loudly so the foreigner can understand them. Not recognising that the foreigner is actually the native and it is the Englishman who is the foreigner and that simply speaking English LOUDER does not aid communication. Change English to NT and Russian (an example I often use) to autistic and I hope the concept is easier to understand. I am NOT ‘Johnny foreigner’, I am a native of my country and you are the stranger in my land just as much as I am the stranger in yours.

My major battle with social rules is not that I don’t recognise that the world around me is based on a set of social rules that I just don’t process. It is in the world around me not recognising the validity of the social rules of my world or indeed my right for them to be different.

I believe that if you want someone to adapt to your world you should be willing to adapt to theirs – whatever those worlds are. I am and do. Indeed my experience of being in France (for example) is that just speaking English can hit resentment and yet my pathetic attempts at schoolboy French get a better reception. That is, people are more understanding when they see you make an effort to understand their world. That works both ways.

Postscript

Nobody likes situations that feel unbalanced. Autistics often have a very strong sense of fairness, right/wrong and an exaggerated sense of absolutes. So, we can be more sensitive to issues of fairness and balance that NT’s are and deal with such situations less well.

Please remember that when insisting that we learn your NT social rules, and you don’t think you need to learn ours.

 

Letter from the North Fri 28-Jul-2017

Compromised Control, or, Controlling Compromise.

I am listening to Unwritten Rules of Social Relationships, and in there Sean Barron talks about living in constant fear. He specifically talks about this as experienced as a child but for me, it is a living experience still, it has never gone away or diminished. He talks about the need to control his life in order to manage this fear.

Dealing with this fear is a problem not just for the autistic, but also for those they love and who love them. Maxine Aston has talked about Cassandra Syndrome (now Affective Deprivation Disorder) and I know I am guilty, well not guilty because that implies fault and being autistic is not my fault, but the impact on Teresa is our responsibility and I have to recognise that my need for control, simply in order to cope, must be tempered with her need NOT to be controlled, micro-managed even.

I have been divorced twice and in each marriage, I felt my need for control growing and could see the impact on my wives. Because they were unable to work with me on the communication issues we had (I did not know at the time that the difference I was experiencing was autism), my distress escalated. My natural response was to try to exert more control over my life – which meant over them. Because of me, they were both victims of Cassandra Syndrome.

Of course, it takes two to tango (I would call this a ‘saying’ but apparently it’s an idiom) and the solution, as Maxine Aston points out, is for both parties to be willing to understand the impact of their actions on the other, and do something about it when necessary.

It’s the art of compromise coupled with a willingness to understand difference and diversity.

So, in this letter I’ll look at our trip to Warwick Folk Festival and at finding a balance between my need for control and Teresa’s need for freedom.

This is going to be a long and probably tedious letter, but in writing it all down, I hope you can get a sense of the constant thoughts spinning around my head and how hard I have to work to not allow them to take me over – as they have often done in the past. Even harder, how hard I have to work to hide them from Teresa so I don’t make her life a misery (remember Cassandra).

Teresa tells me that saying this is long and tedious will put you off, yet to make it less so would be to hide the reality of what is happening for me and I don’t think that would be helpful if you really want to understand, so, I’m ignoring her comment this time (in general I respect her advice on this stuff) and here we go:

Well, I am here, it’s The North but not THE North. Sitting here in our caravan in a field at the Warwick Folk Festival at 10:30 am on Friday morning, no beer yet but it WILL happen.

I have tried to describe to Teresa the problem I have coming here, the fact that I want to be here does not overcome the fact that I am terrified and stressed out of my head. It’s a problem of compromise and understanding before we even left home.

I worry about, and when I say worry we are talking physical shaking, terror, …, nothing mild in the autistic world ????:

  • I will be away from home, from my ONLY safe place
  • Will we remember all we need to pack
  • Will the caravan still move after being stored in the field
  • Will I be able to get the caravan out of the field or will someone block me
  • Will the roads be clear
  • Will we be able to park at the services
  • Will the Landrover (Blossom) tow the caravan all right
  • Will I cope with towing (there have been times when the whole journey with a caravan was so terrifying that I shook almost all the time) – fortunately Blossom has taken away that problem, but I still remember the fear and my body still replays it when I think of the driving
  • Have we got everything
  • Will the caravan work properly when we get there (it didn’t)
  • Will there be a lot of traffic
  • Will we be able to sleep at the services (we were travelling overnight to avoid traffic)
  • Will there even be space at the services I WANT to sleep at
  • Will we arrive at the festival at the right time – not before 9.00 am (because their stated rule is not before 9.00 am) when the site opens and not after 9.00 am in case someone gets MY space
  • Will I get my space? I have been to this festival before and I KNOW where I pitch up, anywhere else would be a disaster. If I haven’t been to somewhere before the stress is even worse, will I BE able to find a place I like?
  • Will the pitch up go ok, will the water work, is the battery charged enough (no it wasn’t), do we have enough gas
  • Will it rain (it is forecasted) and cause problems with getting stuck in the mud (that’s why I have a Landrover, to manage that fear,  but even so, most people don’t and they cause a lot of damage to grass fields)
  • How will I cope with the music sessions, sitting down for long periods (over 1/2hr) is unpleasant, I NEED Teresa there to guard my seat because if I leave it I will never get it back and that’s the only seat I am happy with.
  • Will I get the seat I want? I must queue before the event I want to see opens so I can be sure of finding the RIGHT seat, I can queue for over an hour just to be “safe”. I can then wait 2-3 hours for the one act I wanted to see in that concert.
  • Will people make too much noise on the campsite (i.e. any), I know they are enjoying themselves, but, …
  • When we leave will the exit be blocked by mud
  • Will the traffic be a problem with the mass exodus
  • All of the worries about the journey here
  • Will I be able to put the caravan back on the field if it’s full of holiday makers
  • Will I be able to put the caravan in the RIGHT place on the field
  • And so it goes on, and on, and on, and on, …, this is the short version of the list, the actual worries are far greater in number and all distressing.

At one level all I want to do is be at home with the caravan parked up at The North. All the time we are away that will be the major thought locked in a loop inside my head, imagining myself at home with the caravan in it’s place and everything unpacked and no disasters.

Teresa wonders why I bother going away, it’s a good question and it is typical of the battles I face everyday, I want to be out and about in the social world, and even like being in it at times, and yet I hate every second I am with people and away from my safe place.

So here we are, the tale of Warwick, trying to practice the art of controlled compromise.

———–

Two days of preparation, actually much more but two sounds less obsessive than the weeks it was for me.

Checking the route on google maps, in great detail, working out all the problems with the journey that COULD occur. Using “street view” to walk to the campsite entrance to make sure I knew what I was doing.

It was not a continuous process of preparation, I had work, Teresa had all sorts of other stuff to do, but it was an intense couple of days (preceded by a lot of planning). Lots of salad components made by Teresa, sorting out all the bits and pieces we needed to move to the van ready, clothes, a long checklist, we packed up the Landrover (Blossom) and the caravan on Thursday after I got home from work and left it all hooked and ready to leave and went back home. About 7:30 pm, after checking there were no delays on the road, off we went.

Hmmm, that all sounds so ordinary and ignores the fact that I was so stressed that I could barely contain myself and avoid getting angry with Teresa (for absolutely NO reason) because there was no obvious reason for my stress so it must be her fault. No, of course it wasn’t, and yes I do understand it’s that list (above) that is the heart of my stress, but understanding that, acting on that is difficult and takes a lot of practice. Without that, I will end up being horrible to her and she won’t deserve it. Cassandra is VERY real.

The roads were OK but we hit a problem when we reached Exeter services. Here, the caravans are parked with the lorries and on this occasion the lorry/caravan park was jam-packed as we searched for a space we found ourselves driving out. Major stress, I had told Teresa we would be stopping there and I had failed, failure is a major problem, it shows a lack of control and a lack of control, well … Anyway, I tried to be chilled and went to plan B (I always have plan B, C, D, …). I wasn’t chilled, Teresa expected me to appear more stressed than I did, good, I worked hard to manage my stress and having those extra plans helped with that. In the past I would have got cross with her for making me stop at Exeter, and then it is her fault I failed. It wouldn’t be true, it would be my brain getting confused as it tries to deal with the unexpected. By expecting the unexpected, I can manage better and be a nicer person whilst not denying my genuine stress and worry.

We often drive from Cambridge down to Cornwall, no Caravan, and always stopped at Exeter for Teresa to go to the Loo (last stop before home) and have a coffee. One trip I said that Exeter was coming up, I believe I woke her up to tell her and she said that she didn’t need to stop. I went ballistic, we HAD to stop, she MUST need us to stop, anything else is a wrong and unacceptable pattern. Of course I was in the wrong, but also Teresa, had she been more aware of my need for patterns, she could have helped me deal with it. In that case I was in the wrong and yet WE could have managed it better. I have no problem admitting my failings, but my wiring is my wiring and living with me needs adapting to that as much as I have to adapt to the strangeness of NT wiring ????.

Anyway, back to the Warwick trip. We tried again at Taunton Dean North. I don’t like Taunton Dean North as the facilities are quite poor, unlike Taunton Dean south which I do like, but we managed to squeeze in next to the lorries and so popped to the loo, got a coffee (for me) and hot choc (Teresa), one of us needed to stay awake! The coffee shop was closed as it usually is in the evening (as I said, it is not a good service station) so we had to make do with a machine. Yet again, Bean has failed to provide the right/best services for Teresa. The fact she is chilled about it is NOT the point, I know I have failed. We are parked in the middle of a lorry park with poor services. Teresa wanted a sandwich but the ones in the shop at the services were not to her liking. Yet again Bean fails to provide what she needs, it would have been fine at Exeter, but I failed to get us there ????. I am coping, but this is NOT going well.

I had brought some cold pasta (for me) to eat (so I knew I had something I wanted to eat – control I could exercise without anyone really noticing) so I was OK. Off we go again.

Now my original plan had been to drive on to Hopwood Services (on the M42 near Birmingham and about 1/2hr from Warwick) but our experience with parking up left me worried, would we have anywhere decent to sleep? I know the caravan spaces at Hopwood are brilliant and away from the lorries but there aren’t many and, oh yes, Bean fails again, I had forgotten that it is the school holidays and so of course the overnight stopping facilities are stretched, why didn’t I know that, why didn’t I plan for that, I failed again!

So I decided to start with Gloucester services (which Teresa wanted to try as it’s new and has a good reputation) and if that doesn’t work, then at the M50 then M42.

Now we had discussed stopping at Gloucester before we set off but I had never stopped there with a caravan and so I didn’t KNOW it would be ok, also it is much further from Warwick and so would make a longer journey in the morning with the rush-hour traffic. Also I had not checked out the fuel station to make sure I understood where I could fill up the caravan. Not in a lorry slot because places get upset at that, so somewhere where I could get out of the filling station with a caravan on the back. I only ever fill up at a few selected places that I know work (Hopwood and Taunton Dean Southbound). So even if we did stop at Gloucester, we would still have to stop at Hopwood to fill up with fuel.

As it turned out we got to Gloucester around 11:30pm so a good time to go to bed. The caravan parking was separate to the HGV’s (and so quiet) AND it was empty, so we had a very good night. Phew I got something right.

Up at 6:15am. We picked up some tea/coffee at the services, I already had some muesli for my breakfast, homemade muesli so I knew what I was having. Teresa got herself a croissant I think. While she drank her coffee I would have been waiting for my tea to cool down, so I walked from one end of the services (where we were) to the other end, where the fuel station was, and checked to see if I could use it ‘safely’. I could, phew, so I walked back to the van, drank my cup of tea and off again.

I realised that we weren’t far from Warwick (an hour or so) and knew we couldn’t be there till 9am, but I didn’t trust the roads. They were very busy, but we were clearly going to be too early so I stopped for a quick loo and to pick up some Wine for Teresa at the M42 Services (Hopwood) and we still ended up being at Warwick 10 mins early. I could see we were early but there was nowhere to stop and wait, I was getting increasingly tense about what would happen and how I would deal with being turned away. As we drove past the campsite I could see, through the trees, that it looked busy and the stress levels went up further. Teresa was impressed I didn’t melt down, she was of course confident we could find a spot. I was NOT and very worried, but I made an effort to be calm on the outside and …,

At least there wasn’t a problem being 10 mins early, they were ready for people and in we sailed though they did comment ‘you will have to hunt for a place,’ not very helpful!

The whole site was packed, it had not been like that previous trip (7 years ago), clearly loads of people had arrived on Thursday evening. So I decided to try for my preferred location as I REALLY wanted to be there and I hoped …

On the last but one row I saw a spot where I could squeeze in and I could drive the rig straight into the end of a row and leave the two hitched up for an easy depart. Phew, some of the stress melted away, but the feelings from it remained. All that adrenalin has nowhere to go, so despite the ‘problem’ being resolved, it remains essential to be ‘on guard’ for reacting badly to minor events.

While Teresa sorted the inside of the van, I hooked up our big gas cylinder, chained it to the van, filled the water barrels and connected up all the facilities, and we are here!

The water heater is on, we have washed, shaved (just me), teeth cleaned and changed into summer frocks (both!).

Made a bit of lunch a Pek Chopped Pork sandwich (French stick from Gloucester services). Pek is a familiarity thing – my dad loved it when I was a child (with mustard), had it for his lunch EVERY day for as long as I knew him. There is little doubt I inherited autism from him and mum (a double whammy!). I’m OK with the mustard but I prefer chutney, and we had brought both chopped pork and chutney (and marge) with us, well of course we did, then I didn’t have to worry. The site is supposed to have bread for sale and Teresa was up for getting our bread when we arrived, I wasn’t happy with that, but it seemed a ‘reasonable’ compromise, even if I thought it wasn’t really. I was worried the bread shop on the campsite might not be open when we arrived but fortunately Teresa liked the look of the bread at Gloucester so we got it there. Phew, one less thing to worry about!

11:20 am off we go to explore the festival site.

Lots of rain is forecasted but I brought two sets of clothes for each day and the main entertainment is in the marquee, so I hope it will be OK. I worry about mud! Fingers crossed.

So we are in The North, not sure if I have talked about this before, but that’s never going to stop me repeating myself ????

For Teresa, who is a Londoner, moving NORTH was moving from London to Newmarket. I moved North from Sissinghurst (in Kent) – The South – to Billingham (Co Durham, Teesside, Co Cleveland). I consider Billingham to be the start of the North, Newmarket barely out of the South.

So you can see, for me, Warwick isn’t the North but for the sake of this letter we’ll go with Teresa’s definition!

12:10 and here I am in the beer tent, drinking beer, obviously. Nice and quiet and lots of free chairs and tables; once things get going, or it rains, that won’t last and it will be standing room only, so, I am happy for now.

The glasses are a hard polycarbonate – a good compromise between dangerous glass and floppy plastic. £1 deposit to reduce littering. Very sensible to me.

There have been so many ‘autistic’ conversations since we got here, just issues over arrival time, getting pitched, do we come to the beer tent or go into town (the threatened rain got me out of that one).

For example, I just went to kiss Teresa. I do that if I feel the emotion, I can never know when it will just well up so I have learnt to grasp the moment, however inconvenient or inappropriate, so I pulled her head towards me. To her it felt like a ‘grab’. So I now feel awful for hurting or surprising her, and that I got this whole demonstrable affection thing wrong, AGAIN. My action may have been clumsy but it was from the heart and that won (this time, it doesn’t always).

Teresa said ‘This must be how the cat feels when I give a cat a pill.’ i.e. she takes the cat firmly by its head, prises open its mouth and pushes the pill down its throat. I’m not sure that was how I kissed her, but…

Fortunately we can talk about it, and laugh, and it’s OK, but it is a minefield. I told Teresa what I had just written and she says that she’d rather a pill pushed down her throat than not, in other words, me being a bit rough physically (by accident) is better than not getting kissed at all. NTs, I’ll never understand them but at least this one understands enough that on our good days this sort of incident is not a problem for either of us. It is so easy for it to be a problem, for one or both of us, if we are not both on good form.

The beer is excellent and lots of choice but I’d rather be at THE North drinking PJ, yes same old beer. Yes there are lots of different beers here which I do like but the North is MY space and I’d rather be there. But then I would, the point is that Teresa is enjoying herself, sitting here with the program working out who she wants to see and when she can see them

Me, I’ll just tag along. There is only one MUST for me and that’s the Oysterband, and Teresa is up for that. So, for me, the easy path is her path.

This is not how I’ve done festivals in the past when I have been very controlling to make it work how I need it; this is a trial to see if it’s possible for us both to enjoy the festival in our own ways.

I went to pay for Pint #4 (not yet 2pm so…) and got the price wrong (£2.70 instead of £3.70) I was so embarrassed, I laughed it off, but I felt the floor open and I wanted to run out of the bar and never go there again. That old fight and flight reflex is always waiting!

Nipped over to caravan to get some warm cardigans and pick up my lunch (made earlier). Anyway, nice bit of lunch. Sun is now shining and so Teresa is off for a look around the stalls. Me, I’m safely nested here and I’ll stay with the beer and my Kindle. Bye for now, chances are you won’t hear from me till I’m back in Pendeen and over at the Gurnards Head on Monday lunchtime for our Wedding Anniversary meal.

Postscript 

What you have read is a precis of what was really going on, my brain never stops dealing with and planning for problems, potential problems and coping strategies. I normally keep it hidden because, in my experience, other people form conclusions as to my nature as a person because of what sort of person they would be if they felt like that, and it’s not complementary!

There is much more that followed the end of today’s letter and I will try and return to it later, but it’s complicated to work out how to write it, so I’ve chosen to stop here.

Lastly, the whole emotional game is a nightmare and I’m not good at all the kissing, hugging, “I love you” stuff, so, for me, solving practical problems and making the practical world (e.g. taking a caravan to a festival) as smooth as possible for Teresa is how I can show my love. It’s not a perfect way, but it is often the best I can do. So, failing to “get it right” is tantamount to saying I don’t love her enough. If you can get your head around that, you are well on the way to being a real autism expert :-).

To return the cat metaphor, think of a cat bringing in a dead mouse as a present, it’s not what you’d really want as a present unless, maybe, you were another cat, but you understand the intention and that is what matters. I am forever bringing dead mice to Teresa as gifts, it is surprising just how many she accepts! Yet if ever she quite reasonably doesn’t fancy a dead mouse, I feel I have failed, it’s not her fault and she would say it’s not mine, but I’ve lived my life as a failure on the emotional front and it’s very hard to put that aside, though I do try to.

As a final footnote, I think I’ve said this already, but please don’t think your use of the word ‘failure’ and mine are the same, it is my experience they are very different things.

Bean, A North, but not The North, Fri 28-Jul-2017