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.
2007/08/04
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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