Letter from the North

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 

 

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