It is often difficult to draw the line between organisation and action group or peer group. Small groups can make a difference, helping their members, influencing public policy, educating people, often just as well as larger organisations. At the end of 2007, I talked to Kerry Brook, representative of one influential action group, Autism Rights Group Highland (ARGH).
I asked Kerry about the events leading to the formation of ARGH. The history of the group is closely tied in with local service development
- From June 2005 to May 2007 the Scottish Executive funded a study looking into the provision of services for autistic adults in the Highland region of Scotland. As part of the study consultation groups were formed: one for parents / carers to give their views and one for autistic adults themselves to contribute. I should mention that it took some persistent persuasion before the group for autistic adults was set up as this was not in the original plan.
- At the first meeting of the adults group a few of us decided that we wanted to form our own group that would continue after the study had finished and would be fully independent and managed by ourselves and other autistic adults. For many this meeting was the first opportunity to meet and mix with other autistic people and we felt that meeting each other was of benefit and should continue.
- As the funding for the study and therefore the original group came to an end Simon Webster who had been given the task of executing the study facilitated the continuance of the group: by arranging funding for insurance and aiding the drawing up of a constitution; he gave us the “kick start” that we needed to continue before being left to run as an independent group.
After the survey of needs, recommendations were made to develop the local services, but these were ignored – apart from one, which led to a disastrous situation.
- One recommendation was implemented (a recommendation that was added at a late stage of the consultation and contested by parents/ carers and the autistic representatives): the decision to withdraw funding from the Scottish Society for Autism; (SSA). The SSA had been providing the only autism services for adults in the whole Highland Region (although they also dealt with children and families) including referral for diagnosis, suicide prevention, relationship counselling, crisis management housing problems and general day-to-day problem solving.
ARGH's current primary concern is with acute situations created by this gap in service provision.
- The most urgent need is a point of contact for those that find themselves in crisis and have no-where to turn; a service that will ensure a safety net for those that find themselves alone and desperate and may be at risk including at risk of suicide. Currently there is no provision of services and autistic people without an identified learning disability or serious diagnosed mental health problem; we fall through the gaps and there is no responsibility on anyone to provide any service at all.
Like most groups of autistic adults, ARGH has had to define its boundaries with respect to existing organisations and non-autistic allies. Full membership of the group is limited to people on the autistic spectrum only, but this was a decision that required thorough consideration. Co-operation is valued, but experiences of conflicts have made the group members cautious.
- A couple of us who have children had previously been members of a local autism society that had claimed to represent autistic issues as a whole but we had found them to be quite obstructive and unwilling to listen to the views of adults. After months of bullying this culminated in the expulsion of several autistic members from the group as they saw it as a group for parents only.
- I personally would have preferred to have kept working with the parents in the area as I feel that speaking with one voice is an ideal: parents/ carers and autistic people working together for a common goal. This view however was not shared by the parents who made the decisions and so was unworkable. In the end we felt that to ensure our voice was strong and spoke from an autistic viewpoint we would have two tiers of membership: full members who are all autistic and associate members who do not have voting rights yet share our principles and vision.
More recently we have been developing a working partnership with a parents group who are more accepting of the need for autistic people themselves to have a voice; we are not opposed to working with NT allies we welcome working as a team but we still feel a need to retain our autonomy.
Local publicity has turned out useful for ARGH, making service providers more attentive to their message. The members are developing roles as consultants and educators, gaining respect and credibility through years of effort.
- After a recent newspaper article which ran on the front page as the leader in our local newspaper (for which two of our members were interviewed) we have raised our profile and found it much easier to arrange meetings with local managers in health and social work, currently we think they are listening and are hopeful that some progress will be made in the provision of appropriate services. Many of our members have been involved in training over the years including in conjunction with the SSA and the education department; talking at seminars and direct hands on training.
- Next month we have our first day of training that has been designed by one of our members and will be delivered by us alone; hopefully this will be the first of many.
Regarding co-operation with other groups of autistic adults, Kerry is cautiously positive, emphasizing the principles formulated as ARGH was formed.
- We have been careful to make sure that ARGH is fully democratic and it would be something that members would have to have agreement. We have not had lengthy discussion on affiliation or working with other groups, however our members do appear to agree that we value our independence and we are striving to make a difference in the Highland region whilst in the future hoping that growth may be possible.
- There are members of our group who have attended Autscape and we have some who are AFF members also. I am not really sure who we are closest to ideologically, I’d probably have to go for ANI (although I am aware this is not a UK group) because they are closest to our principles but also share the belief that equality through choice and opportunity are key. Although this view is shared by many groups we would not wish to associate with any group promoting autistic superiority. Equalness and fairness of opportunity: the right to live a full life as the individual chooses are crucial.
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