Letter from the North

Letter from the North Fri 14-Jul-2017

Independent Living.

This phrase was thrown at me earlier this week and it rather knocked me for six. I believe that’s a cricketing metaphor which is odd,  because I have no interest in or knowledge of the sport so, lest you think I am into that sort of thing, I’d like to make the point that I have no interest in or knowledge of or desire to ever converse about or take part in any form of sport – cricket included.

Well, that’s that cleared up. I am a member of the NAS, that’s a charitable organisation in the UK called the National Autistic Society. I have been to one local meeting and was a co-trainer for a couple of training session they did for professionals working with autism.

I have found it quite difficult to get past an emphasis on autism as a disability. Still, they are the National organisation, so being a member seemed the right thing to do.

A few weeks ago I spotted they were running a conference on Women and Girls in autism. Looking at the description it seemed to me to be a “there’s much too much done about boys/men, we need to balance things.”

I get that, just about, but two wrongs don’t make a right. You cannot consider a flavour of autism that is typical in males and a different flavour that is typical in females. Humans are far more diverse than that. Even in people identifying as male you can find autism behaviours that go from that expected in males to that ascribed to females and vice versa. Once you add the gender diverse community, it is blatantly obvious that we should remove the idea of gender from looking at autistics and instead look at how it affects the individual.

I tried expressing this idea to the organiser of the conference, I got the brush off, very polite. Whilst these days I can usually identify a brush off, I did check with Teresa because NT’s (neurotypicals) are so good at sounding like they are saying yes and meaning no, and the opposite way around. Why they feel the need to do this I do not understand, but they do.

I tried contacting NAS higher up and got the brush off from them too. Indeed the people at the end of their email system seem to be trained in what Teresa calls “flack-catching” i.e. providing a buffer between the “serious” part of the organisation and the outside world, protecting them from anyone who they don’t want to engage with.

It is in one of those flack-catching emails that someone summarised my concerns saying that I wanted advice on independent living and very kindly told me that NAS have leaflets and a helpline for that.

No, I replied I wanted engagement and since you are unable to listen, please cancel my membership.

So long and thanks for all the fish NAS ☹

“… independent living”, sounds like confirmation of my worst fears, that the NAS are as fixated on the disability model for autism as everyone else seems to be. Of course it’s never that simple but the autism “system”, wherever you look, does seem concerned with helping us cope with them but do not seem to be concerned about peaceful and cooperative co-existence of equals, and it’s the word ‘equal’ that is key here.

I have tried to engage with mothers (and it is overwhelmingly mothers) of children with autism and it can be very painful, they are so focused on diagnosis and getting resources to help their children that it sometimes feels that the children themselves are almost incidental to the parents’ battles.

I understand that today’s society (in the UK) requires diagnosis of a learning disability before resources will be released to help children, but children grow up into adults.

There are extremes of the autism spectrum that can lock an individual inside their bodies (e.g. non verbals) but they are not necessarily mentally or learning disabled. They just have a communication problem with mainstream society. Indeed, if you listen (however they communicate) you find that often the behaviour you think is a problem comes from frustration at a lack of understanding by those around them. That is certainly true for me. Separating learning difficulties and other medical problems from being autistic is not simple and too often it all gets wrapped up in labels.

Autism is NOT a disability, it’s a difference. It can be associated (Comorbidity) with disabilities but, of itself, it is not.

Despite being considered to be a competent communicator, I do have all sorts of communication issues, but the actual problem is the people I try to communicate with. If I change the population I am talking with (e.g. other autistics) then the problem disappears. So, do I really have a problem?

I left the NAS because I am not a victim, I do not want to be classed as disabled, like many people like me, I am quite capable of “independent living”, it can be difficult and stressful, but it’s not a disability problem, it’s a ‘who decided that my way is wrong and theirs is right’ problem and that is about discrimination.

The problem is that most of us are off the radar, we don’t ask for or need diagnosis, we are quite capable of working that out for ourselves. We are often experts in our field and very employable and the managers in our industries accept that to get the best they have to accept eccentricity – of course we are not eccentric, we are normal, but it works for us if that’s what they think and are happy to employ us,

Don’t think we are a minority, we aren’t but we are invisible, it’s easy to dismiss us as the geeks, yet we are fundamental to much of the underpinning of the world people live in, look at technology, engineering, we are there, you wouldn’t be reading this blog without people like me.

So, what to do? Every day, I see the struggles autistics face, dealing with a world that accepts them because it needs to but only in their place of work. In the world outside of that we are strangers, oddballs, misfits and trouble causers.

It’s not surprising that most of us don’t try to communicate with the world outside, it’s a thankless and unpleasant task, I know, I try and the best I get is ignored.

I know I am not alone and yet because the vast majority of us accept the status quo, we end up without a voice and the experts (the NAS included) don’t know about us or do research on us because they have no idea who we are – if the few of us who try to engage are ignored, then how can anyone actually know about us.

Well, Beanisons was founded to address that problem in the small; but I don’t know how to address it in the large. Blogs, Facebook, social media are all well and good but you end up talking to those who already agree and never reach beyond.

It is impossible and it makes me ANGRY, so very angry.

I was training to be a counsellor and had to give that up after 3 years because of systemic ignorance of what autism means in someone like me. I will write about that in a lot more detail when it is safe to do so, but it is just another symptom of the problem.

It is my experience that most autistics like me, just accept that the world around does not understand and get on with their lives, miserable as they often can be.

I understand that and, based on my experience of trying to do anything else, they may well be right, but I just cannot accept that and yet I feel powerless to do anything.

So, I will fight the fight in my little area of West Penwith and try to help a few lives be improved.

Blah (as Teresa would say), autism is NOT a business or an illness, it is a way of being, please get off the bandwagon and meet us as people, not as the results of a diagnosis.

Postscript

There was a time when Teresa checked these posts, helped me write better English and generally ensure that what I wanted to say came across. She is too busy with her own writing, so her input is minimal nowadays, which is why I stopped releasing these letters, though I continued to write them.

I’ve decided that if I try my best then that should be good enough and from here on, I will start to release the backlog.

So what you read is all me, and it won’t be pretty, my English teacher called me lazy – he was of course wrong, I try VERY hard and have done so with this blog. So if it looks like it was just thrown together then you may have some insight as to how hard communication really is for me, because this is as good as it gets.

Bean, the North, Fri 14-Jul-2017

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