2008/04/02
Interview with Matthias Huber
For the past ten years, Matthias Huber has been involved with Worldwide Autism Association (WAA), a small ‘by and for’ type organisation founded in Switzerland by Patrick Frey. WAA has multinational membership, and all its members are on the autistic spectrum. Recently Matthias also became board member at his national autism society. I interviewed Matthias about his experiences and his current academic work.
The idea of self-representation autistic people has come up only recently in the Swiss autism society. Matthias tells about how things started moving:
- I am member of Autism Switzerland, German-speaking part. We have a French-speaking and an Italian-speaking part. Together we all form Autism Switzerland.
- There were some people on the spectrum who complained about only parents and professionals being board members. After some discussions within Autism Switzerland German-speaking part, they decided to take an autism spectrum person "on board".
I asked Matthias about the selection process. He expressed satisfaction with the cautious and thorough preparations taken by the Autism Switzerland board.
-They first invited me because I was recommended by professionals as being always on time, knowing much about autism (personally and as a professional), being active in teaching parents and professionals about autism, and teaching people on the spectrum about the behaviour of the non-autistic population.
-They invited me to some of their meetings, as a visitor for a couple of times. During these meetings they explained everything to me; structure, formalities, and content of discussions. After these visits they asked me if I would be interested in becoming a member, and if so, what would be my personal interest in being one. I got officially elected at a general meeting.
-They did a good job. Explaining every step, asking what would be appropriate for me – regarding things like asking questions, environment...
Matthias has a variety of tasks, tailored to his abilities and limitations. There is plenty to do, as awareness about adult issues is still very limited.
-I am a representative for people on the spectrum. That means I tell board members about their requests, their wishes, their concerns. I do not have a department as the others have, but "special duties and responsibilities".
That means I only do things I am capable of, like helping with renewing older articles about autism, or to writing some parts of new ones. Or helping to find future speakers (professionals, parents, people on the spectrum) to invite to our events. They ask me about my opinion on offering a workshop for people on the spectrum, what ideas I have, or if I could ask others on the spectrum about their wishes. I go to autism relevant events and tell them about it, or I write summaries about the events.
- There are urgent issues in Switzerland, like being aware that autism is a life-long issue. Adults on the spectrum are rarely discussed in media; diagnosticians for adults are not yet taught about the autism spectrum; there are workshops and summer camps for children and teenagers, but not yet for adults. Many adults on the spectrum do not find appropriate education, jobs, or apprenticeships.
Matthias trusts his autism society’s willingness to improve the situation. He believes that much could be gained by international co-operation and networking, but has doubts about his own resources in this respect.
-Autism Switzerland and its German part are interested in hearing from adult-oriented projects from other countries, and they are in contact with Germany for instance.
-Sometimes it is not possible to copy everything, due to cultural, political or social differences, but it is possible to copy some parts and to modify the rest.
-I am convinced that international networking between autistic adults or between organizations is important. Personally I am afraid that it would take too much time being active in networking, but I am still interested.
In 2005 Matthias visited us in Finland, running a workshop about his master’s thesis. He got very positive reactions from the Finnish audience, as a professional dedicated to patient, empathetic hands-on work with children on the spectrum. Currently he is pursuing a doctoral degree.
-My doctoral thesis is about special interests in Autism/Asperger Syndrome: The meaning of special interests. Until today, no research has been conducted on a possible correlation between the stage of psychological development of individuals with Autism/Asperger syndrome and their cognitive, emotional and social expression while engaging in their special interests.
-I would like to show that special interests are more than a clinical symptom. They should be seen as more than just a psychopathological diagnostic result. Special interests are a tremendous resource at home, at school, at work and at therapy sessions.
2008/03/05
Interview with Kerry Brook
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.
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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