Terra Incognita beckons, could this be my last blog?

I was going to entitle this blog “the suicide season” but that is too scary or “suicide postponed” which is more accurate, but I did not want people panicking and overreacting.

Anyway whilst driving into town on a necessary errand, it occurred to me whilst thinking deep suicidal thoughts that it can’t be that bad else I wouldn’t be paying attention to the road and my safety would I I seem to have far too much hold on life to be reckless on the road:)

Well it may be the suicide season, but I think I still have too many immediate things to do so I will postpone the crisis until June, in a Micawberesque hope that something will turn up (it won’t, things never do, interjects the perpetual pessimist)

So what brings all this on then?

Well I note a general tone in my blogs of dissatisfaction with life. Winter is always a miserable time for me, more so now when I am sitting around in my cold flat worrying about the heating bills.

My decision to study at Birmingham is one of the principal causes for my unsettled state beyond the season itself, in that up to now I have had the structure of a conventional course to take me away from my flat and give me some routine. Things are not turning out with distance learning, it is not that I can’t cope or am behind in any way, I just don’t like it.

I am determined to continue though, because the second of my worries would not be a worry if I planned to abandon my studies, and that is my concern over how I will pay for them next year. (Hence the postponement of any suicidal plans until I am certain I will not be able to)

And what else? I am disappointed that no-one is buying my video from the NAS. I am disappointed because it is clear that a coherent and rational lecture is not what the autism market wants, I am badly positioned.

I would be better off as another autism “whore”. Dancing to my masters tune at some curebie conference. Do you think they would take my teeth out too, like a dancing bear so they could be sure I wouldn’t bite?

The upshot of this despair is that you might be seeing more of me on youtube instead showing that I can play the flute and act the fool. A few brief hints of Terra Incognita, that project that is pointless my continuing with as there is no market for it.

So is this my last blog?

Probably not, I know myself better than that, and although I am somewhat sick of the autism hub at the moment, things may change.

I pagliaci.

The NAS and I

Considering the speculation as to what the role of an NAS councillor is, on posts to fellow councillor Mike Stanton's Blog I have decided to post something I was asked to write following my election to the board and I include the preamble that goes with it, to set it in context.

So there can be no doubts about whether I am writing with NAS approval or not, the article as written was passed by the then Chairman Tony Kay before I submitted it to Autism Europe for publication, which explains why I am fairly tame in some parts of it and don't speak more of the particular struggles I had to gain acceptance and credibility. Please also bear in mind that I wrote this more than three years ago, at the beginning of my role on the board of trustees. I have now served one full term on the board and was recently re-elected for a second term.

Preamble:
The following article is by Larry Arnold, a person with an Autistic Spectrum Disorder (ASD) , who has recently been elected to the Board of Trustees of the National Autistic Society, (NAS), in the UK. He was asked provide an article for the magazine LINK, the magazine of Autism Europe, to describe why he stood for election and to express his reactions to the NAS.
Readers should be aware that the NAS’ governing body, the NAS Board, is elected by an electoral college of 35 Councillors which in turn, is elected by the whole membership.
A working party was established several months ago to examine whether to change the constitution and governance of the NAS and, if so, what changes should be made.

The NAS: The view of an insider with ASD

My first encounter with the NAS was back in 1999 when I was looking for information to take to my doctor about diagnosis. I was in London for a meeting with RADAR (Royal Association for Disability and Rehabilitation) as I was at that time the member’s representative for the West Midlands Region.

My next encounter was after I had joined the NAS and went to my first AGM. The meeting was not too far away from me I decided to find out more about what went on being as there are no branches where I live. I did not really know what to expect and sat through most of it with a burning question on my mind. Where did I fit in? I had in my past involvements seen the general move away from parent dominated organisations in the disability field toward organisations of disabled people. It was very much in the spirit of “nothing about us, without us”, that I asked a question about involving people like myself in the future of the NAS.

I am not sure I was altogether satisfied with the seeming vagueness of the answer, as I did not see a lot of evidence of participation, I had heard of Richard Exley, another person with an ASD and that was about it. However when the papers came out for nominations to the Council I decided I had nothing to lose by having a go at election myself.

I had the support of a couple of stalwart members who I had met on the internet and penned a little manifesto which included such phrases as "cutting the Gordian knot". However I mitigated that with information about the various other committees I had served on locally and to my surprise I was elected.

I would say that I probably started off on the wrong footing with a minority of the 42 fellow Councillors, as I guess I came over as quite confrontational and I found the style of the Council meetings somewhat difficult to start with.

I was aware of what I regarded as some major failings in the NAS so far as representation by people with AS was concerned. I was angered at the constitution’s favouring of parent membership which I saw as a definite barrier to ever seeing a majority of people with ASD’s on the Council.

I felt it was quite difficult for me to put my view across and at the same time convince the other members of the Council that I was not just a one issue person and could think about needs beyond my own.

I was and still am involved in a world wide internet culture where there is enormous suspicion of organisations like the NAS and its American cousins. I felt caught in the middle of this, trying on the one hand to show that there is a competent body of Autistic people capable of taking on the responsibilities of governance and on the other trying to show people why it was worthwhile getting involved with the organisations in question if you want change them.

I have always felt that if you are not happy with something it is not enough to stand on the sidelines and moan about it, you need to get involved.

As I learnt more about the inner workings of the NAS it became more apparent why the simple approach of demanding a quota of people with ASD’s would not work. There were simply not enough of us in the organisation to begin with in order to fill it. What is more on encountering the entrenched views of the “opposition” I came to the conclusion that I needed patience and diplomacy, skills that don’t come easy to me.

I think my real opportunity came through serving on the governance review working party. There I could see why my initial approach was over simplistic and that there was a need to convince the entire membership before major change became a possibility. Although I had demonstrated the power that is potentially there for 20 members to put an amendment to the constitution, I realised that to have gone ahead with a separate motion to remove that part of the constitution which requires a majority of Councillors to be ‘Parent Members’ before the working party had reached its deliberations, would have been to force the issue prematurely and in any case the majority of the working party seemed to favour change so it made more sense to go with that consensus.

So far as progressing beyond the Council to the board, I was disappointed at not making it onto the board at my first attempt, which led me to fear that there was an inbuilt balance against that as one needed a majority of the Council to be voted on.

However I have modified my view considerably as I have learnt more about the structure and dynamics of the NAS. I still regard it as a dinosaur, but not in the sense that it is obsolescent but from the point of view that it takes a long time for things to travel from the head to outer parts of the organisation. Change cannot be forced any faster than the organisation can take it.

I think I have proven something by coming onto the board, that a person legitimately diagnosed with an ASD can be more than merely a token presence and that I can understand and advise on the totality of the organisations involvement not just my special area.

My goal is to encourage other people like me to get involved, not necessarily at top level, but in branches, to demonstrate our abilities through action and learn the skills necessary for good governance. I was pleased when Clare Sainsbury, another person with an ASD spoke as a guest at the last AGM, since she was saying many of the same things that I was and I am sure people were listening.

That is not to say the NAS does not have to change to be more welcoming toward our involvement. Parent members have to overcome the fear that we have a different agenda to them. I want the same, a fairer society, where diagnosis is not a political issue to be stalled for fear of the claim it puts upon resources. Though not a parent myself I am still desperately worried about education and the rising numbers of exclusions which is mocking the so called drive toward inclusion.

In all of these things I speak from experience. As a person who has been through the education system with an unrecognised ASD. I am as qualified to speak about it as any parent is, so long as I keep up to date and keep listening.

We all have a tremendous contribution to make and I include those who are currently using the NAS services in that as well. It is not only a great challenge to the NAS to more actively involve the client group it represents but for us when we do get there at senior level it is a challenge to understand the dynamics of the organisation and overcome our preconceptions so that we do not lose sight of the breadth of the Autistic spectrum either.

The Scorpion or did I blow it?

Aesop has this fable and never mind what my star sign is, it goes thus:

A scorpion wanted to cross the river so he asked the frog to carry him across on his back.

The scorpion protested “Oh no I cannot do that because you will sting me and I will die”

“You will not die” answered the scorpion because if I sting you and you die then I will drown.

Convinced by the scorpions logic, the frog relented and agreed to carry the scorpion across the river on his back, but as the frog swam to midstream the scorpion stung him.

“Why did you do that?” said the frog “Now we will both die”

“Because I am a scorpion” answered the Larry.

Well perhaps I scored an own goal today at the NAS AGM. Well I wear the smart clothes that betoken me as a respectable bourgeois and I try to keep within the rules putting my hand up to ask questions but come the second half then I am as unable to control my own ineffable Larryness as the scorpion was to avoid his own doom, for one of the speakers was an Aspie no less, who appeared to me, to be singing the gospel of Lianne Holliday Willey, that it was wise to pretend to be normal if you wanted to get on in life. Now forgive me if I am misrepresenting the actual message of the speaker I am merely talking of my reaction which was to ignore all protocol and treat the meeting as if I were a placard waving demonstrator intent upon making a point.

“That is everything I stand against” I loudly protested several times before resorting to a self imposed temporary exile from the meeting.

Now the point is, it was perceivably rude of me to shout down a fellow Aspie when that behaviour of mine is surely normally reserved for curebies like David Amaral. Indeed after the meeting there proceeded a discussion where I was challenged by my erstwhile antagonist as to what I had achieved, and indeed maybe I had misunderstood some possible ironic content and subtlety in all of my “righteous zeal” and "red mist"

However that seems forever what I am fated to do. I don’t know in retrospect whether it was wise for a member of the board never mind a member of the audience to remonstrate with a speaker thus and what message this might have sent to first time attendees at the meeting who have yet to encounter my somewhat “unusual” style.

Old timers familiar with me would not have taken that amiss because in a sense not to have behaved as I did would be to be someone other than I am. However the challenge was whether by appearing to be someone other than I am, I might have been able to make a better impression on those I wish to convince of my point of view and not to turn them off.

It is in a way a subtext of this whole “neurodiversity” vs the curebies argument as to whether both sides are being so “unreasonable” that dialogue is impossible.

Well dialogue was not impossible between me and my antagonist even though he had originally got me well riled and right narked.

Well whether it was wise or not, I did what I did, and I don’t suppose this will be the last occasion no matter how hard I try to dress up the external me. My point really was that although I have some degree of choice how I behave (not going into deep fatalistic philosophy here, lets keep it simple for now) and the guy who annoyed me had even more control, I was trying to hold it together for those who will react in unpleasant ways that do not seem in their best interest in the uncomprehending world of NT’s.

Point is though when I say that I actually realise that although I can see the criticisms, see possibly that I did over react and was over literal and somewhat polarised in my thinking perhaps I really did have no choice but to do as I did and cannot try and explain it away neatly. Whatever? I can at least appreciate the consequences and just as last year, when my overriding of the chief exec when I did not like his answer ended up in the official record, I did what I did and just have to hope that my message was still heard in spite of whatever repulsion some folks might have to the way I put it.

Winter Blues

Maybe it is the season or maybe I am feeling my age. I have not been free of a sore throat or cold of some sort for weeks on end and my back hurts to the extent that walking is difficult.

I fear I don’t have the stamina to get through this coming winter and do anything positive, its an endurance to get up and go out these days.

Apart from that I am in relative despair at the way autistic culture seems to be going, I don’t feel much in common with the ever growing number of freshly diagnosed aspies out there, or even some who have been around a while for that matter, whose form of self identity seems to encapsulate just about every false idea on autism going around. And if it is not the received culture of deficiency it is the notion of hyperperfection with the usual litany of retro diagnosed genius heroes to beef up ones ego.

I can see why the autistic world seems to be polarising and whichever way you lean we are actually the worse for it in my opinion (not that my opinion counts for much nowadays)

Quite honestly there is some writing from the spectrum I just would not wish to associate with and sorry to say some of it on the autism hub too.

I suppose when summer comes (If I have not died from pneumonia in the meantime) I shall get a new hard drive and get back to my film making, though what is the point of that as it’ll only end up on you tube I guess since my late attempt at a more commercial venture seems not to be of interest to anyone out there. People want something for nothing, and they certainly don’t want to pay to be told they have the wrong idea about autism. Oh well perhaps the cages of the self narrating zoo exhibits are warmer than my idiocentric flat.