"A piece of the Action"

Bringing the NAS into the twenty first century, thoughts on the governance review

my photograph at the glasgow AGMI suppose it is possible when discussing questions of how the NAS ought to be run, to lose sight of who the NAS is actually for. Fortunately the constitution provides a ready answer to this question, it is “established for the public benefit, for the education, treatment, welfare of people with autism and related conditions

In all likelihood when the Society was set up forty years ago no one considered that there were articulate and intelligent people on the autistic spectrum who had a sufficient degree of self-awareness to take an interest in the affairs of the society. The issues I am raising were very far from peoples minds but that is no longer the case as people like me are wanting a piece of the action.

In fact all that we are doing is following a trend towards inclusion that has been going on since the 1980’s amongst the various charities for disabled people, many of which were established under similar circumstances to the NAS.

Those who cannot see how autistic people can have more involvement in the NAS seem have a number of misconceptions AS/HFA people

Firstly they would allege that we are self-seeking individuals who lack the necessary empathy to be concerned about any of the issues which do not affect us directly

This I know not to be true. Amongst the people I know on the internet and in real life, there are some very caring people on the spectrum who seem to show at least as much concern for others as any other group of people you are likely to meet. There are I know, numbers of people, who are interested amongst other things in working with other people on the lower end of the autistic spectrum as much as improving our own lot. There is a genuine pan autistic solidarity that I am aware of. We can show concern for the welfare and education of so called low functioning people with a form of genuine empathy that is not available for "neuro typical" folk.

 Secondly I have heard it said of those of us who would regard ourselves as activists, that we wear our autism as a badge of pride and consider ourselves as superior to neuro typicals, whilst being in reality bitter warped individuals with huge chips on our shoulders.

My reply to this is; that who amongst us once informed that they have a “disability” would not want to look for the positive aspects of that and develop some degree of self-assertion and self esteem. To decry us for doing comes across a bit like those public information spoofs by Harry Enfield. "Aspies know your place!”

The final myth is that it is somehow in our own interest not to be burdened with the responsibilities and risks that management of a charity involves. However if you consider this properly you will realise that any of the trustees are equally vulnerable and make use of the professional advice of accountants and business people to compensate for any lack of skills or specialist knowledge. On that basis why should we not be able to make use of similar help to aid us in the areas where we are weakest. It is then a matter of balance and partnership where everybody works as a team to make up for the others deficits.

I have held positions of responsibility as a charity trustee, a director of a charitable company and similar and I am sure I cannot be the only person with Asperger’s ever to have done so, if the base of the organisation is suitably broadened there will a wider base of people on which to draw for the necessary skills.

I am not naive enough to believe this can be achieved overnight or that there does not need to be a considerable degree of debate within the NAS first. Nonetheless I do strongly believe that we need to create an environment within the NAS which encourages more people on the spectrum to join. It would however be a pointless endeavour if we only joined for what we could get out of the NAS and not what we could put back into it. Without the possibility of assuming any responsibility or ever being able to change the status quo there would not be much encouragement to join

There should be scope for more involvement at every level of the society in my belief, from local branches to trusteeship and employment. To facilitate this there should also be a greater focus on making training available for people who want to take on active and responsible roles and that includes neuro typicals as well as people on the spectrum.

by Larry Arnold, National Councillor

Published in: "Communication" the magazine of the National Autistic Society Spring 2002 Vol 36 No1

Laurence Arnold and NAS 2002