I am resurrecting this blog under a new name to comment on recent developments in my life and advocacy efforts. When the older articles were originally published in 2007-2008, this blog was called aut-word.
I will be participating in something called the "Autism Representatives Group" or A-reps, which will have a consulting role in the large multinational research programme AIMS-2-TRIALS. The projects in this programme are run by pharmaceutical companies, universities and NGOs, a total of 48 partners. The A-reps group is run by the British research funding charity Autistica, the University of Cambridge, and Autism Europe. Its first six members will support the coordinators in their selection of the rest of the committee.
Many people who know me might wonder why I've decided to participate in this, and whether the organizations where I do my voluntary work are involved.
None of the organizations or networks I'm involved in have had any part in this. I can only consult on the basis of my own knowledge, training and experience. As the project website puts it, we will consult "from the many different perspectives of people with personal experience of autism".
I consider this a tentative early step towards active involvement of autistic people in this type of research. Medical and genetic autism research goes on in many forms, in numerous countries and projects, without any attempt to hear autistic voices, and without anyone protesting. We have to start somewhere to have a chance of learning to influence such work.
I am probably more inclined than many others in autistic communities to expect something useful to come out of biomedical research. I sometimes feel that people are barking up the wrong tree because they have simply misread some article, or more probably, believed some journalist's inaccurate interpretation of it.
I know many people who feel that some type of medication is essential for them to get through the day, and I feel I cannot judge them. I hope some of them will eventually get something more closely tailored to their needs than the current products. I also hope that eventually some of this research will contribute towards monitoring our vulnerabilities to certain physical illnesses, and providing treatments.
I do not have faith in every research direction, though. My presence in A-reps should not be interpreted as endorsement of any particular research team or project partner. I am, and intend to remain, a critical voice, not participating to advertise anyone or anything to potential customers or trials participants, but simply to provide feedback. I'm also hoping that I might be able to translate some of the research to lay terms, to help other group members to join discussions and develop informed opinions.
My views on some general aspects of research are quite close to the ones expressed in this response sent to the European Medicines Agency (EMA) in 2016, regarding their draft guidelines for researchers. The text was signed by several autistic people's organizations, and it was completely ignored by the EMA. Perhaps with sufficient repetition, some parts of the AIMS-2-TRIALS consortium will eventually hear what we were saying back then.
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.
2007/08/04
autistic organisations
I have tried to list all organisations in the world that are mainly or entirely 'by and for' autistic people. This immediately led to problems with categories; what proportion of people on the spectrum is enough - in the general membership, and in decision-making bodies? What is an organisation anyway?
Some don't make it very clear on the net whether they are official, how many people are involved, or whether there are any actual decision-making bodies or formal decision-making processes involved. I like the British, I really do, but they seem to want to do things in little scattered groups that other people do in larger associations. Some organisations seem to do a lot of worthwhile stuff, but if on the website autistic people are 'they', not 'we', I dunno... maybe they wouldn't even want to be listed as part of autistic organisational culture.
This is the approximate list I've come up with, arranged by founding date. Sorry about any accidental omissions. I would love to have information about any organisations I may have missed. I'm including autistics.org and some of the UK groups that seem to have broader aims than just local networking and peer group activity.
Autism Network International (ANI), USA, 1992
Worldwide Autism Association (WAA), Switzerland, 1998
Föreningen AS/HFA, Sweden, 1998 (?) - dissolved in 2002
autistics.org, USA/international, 1998
Autism & Asperger's Syndrome Coalition for Education, Networking and Development (AASCEND), USA, 1999
Autistic People Against Neuroleptic Abuse (APANA), UK, about 2000
PASS-partout, Belgium, about 2000
PAS Nederland, the Netherlands, 2001
The Global and Regional Asperger Syndrome Partnership (GRASP), USA, 2003
Aspies for Freedom (AFF), UK, 2004
Aspies e.V., Germany, 2004
Aspergia e.V., Germany, 2004
Autscape (organising committee), UK, 2005
Asperger Adults of Greater Washington (AAGW), USA, 2005
Organiserade Autister (OA), Sweden, 2006
Suomen Aspergeryhdistys, Finland, 2006
Autistic Self-Advocacy Network (ASAN), USA, 2007
Satedi, France/international, 2007 (2008?)
As far as I know, autistics.org, APANA, PASS-partout, Aspies for Freedom and the Autscape organisers are not officially registered associations or societies. Which doesn't mean they are less significant in any way. I assume the amount of work involved - which would vary from one country to another - and the number of people willing to organise official meetings and such, determines whether people want to get registered.
Some don't make it very clear on the net whether they are official, how many people are involved, or whether there are any actual decision-making bodies or formal decision-making processes involved. I like the British, I really do, but they seem to want to do things in little scattered groups that other people do in larger associations. Some organisations seem to do a lot of worthwhile stuff, but if on the website autistic people are 'they', not 'we', I dunno... maybe they wouldn't even want to be listed as part of autistic organisational culture.
This is the approximate list I've come up with, arranged by founding date. Sorry about any accidental omissions. I would love to have information about any organisations I may have missed. I'm including autistics.org and some of the UK groups that seem to have broader aims than just local networking and peer group activity.
Autism Network International (ANI), USA, 1992
Worldwide Autism Association (WAA), Switzerland, 1998
Föreningen AS/HFA, Sweden, 1998 (?) - dissolved in 2002
autistics.org, USA/international, 1998
Autism & Asperger's Syndrome Coalition for Education, Networking and Development (AASCEND), USA, 1999
Autistic People Against Neuroleptic Abuse (APANA), UK, about 2000
PASS-partout, Belgium, about 2000
PAS Nederland, the Netherlands, 2001
The Global and Regional Asperger Syndrome Partnership (GRASP), USA, 2003
Aspies for Freedom (AFF), UK, 2004
Aspies e.V., Germany, 2004
Aspergia e.V., Germany, 2004
Autscape (organising committee), UK, 2005
Asperger Adults of Greater Washington (AAGW), USA, 2005
Organiserade Autister (OA), Sweden, 2006
Suomen Aspergeryhdistys, Finland, 2006
Autistic Self-Advocacy Network (ASAN), USA, 2007
Satedi, France/international, 2007 (2008?)
As far as I know, autistics.org, APANA, PASS-partout, Aspies for Freedom and the Autscape organisers are not officially registered associations or societies. Which doesn't mean they are less significant in any way. I assume the amount of work involved - which would vary from one country to another - and the number of people willing to organise official meetings and such, determines whether people want to get registered.
Reasons for getting started
I tend to wander around on the net, stopping on different forums and lists sometimes to meet new people. I like to keep an eye on autistic culture developing in different countries, and I've ended up writing course materials about it, among other things. I feel I should share some of the knowledge I've gained with the internet communities. Since I tend to be very busy, with my work and children, I will just start by putting bits and pieces in this blog, for anyone to find... maybe I will get comments that will guide me further.
This is also an attempt to look outward, from our somewhat isolated Finnish autistic community. I am heavily involved in developing new things here, and sometimes I develop a minor existential crisis and feel a need to look for influences and opinions elsewhere. For those who don't know, Finland is a country in Europe, between Sweden and Russia, with its own language and a population of about 5 million.
This is also an attempt to look outward, from our somewhat isolated Finnish autistic community. I am heavily involved in developing new things here, and sometimes I develop a minor existential crisis and feel a need to look for influences and opinions elsewhere. For those who don't know, Finland is a country in Europe, between Sweden and Russia, with its own language and a population of about 5 million.
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