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.
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.