The Global Registry of Autistic-Run Organizations

Post Reply New Topic

I have compiled "The Global Registry of Autistic-Run Organizations (v.1.0.0)"
(compilation date: 4th of March 2008).
If this version includes organizations which do *not* belong in this list, please report them (and explain why they don't belong in this list).
If there are additional organizations which belong in this list, please report about them, so we could add them to this list.

The Global Registry of Autistic-Run Organizations (v.1.0.0)
(compilation date: 4th of March 2008).

Belgium
=======
PASS-partout.be – "Zelfhulpgroep voor Personen met een Autisme Spectrum Stoornis"
Website: http://www.pass-partout.be/

France
=======
SAtedI – "Spectre Autistique troubles envahissants du développement International"
Website: http://www.satedi.org/

Israel
=======
ACI – "Autistic Community of Israel"
Website: http://aci.selfip.org/

Netherlands
================
PAS – "Personen uit het Autisme Spectrum"
Website: http://www.pasnederland.nl/

Sweden
==========
OA – "Organiserade Autister"
Website: http://www.autister.org/

United Kingdom
==============
APANA – "Autistic People Against Neuroleptic Abuse"
Website: http://apana.org.uk/

ARGH – "Autism Rights Group Highland"
Website: http://www.arghighland.co.uk/

LARM - "London Autistic Rights Movement"
Website: http://uk.groups.yahoo.com/group/politicsofautism/

United States of America
==================
AASCEND.net - "Autism and Asperger Syndrome Coalition for Education, Networking, and Development"
Website: http://www.aascend.net/

ANI - "Autism Network International"
Website: http://ani.autistics.org/

ASAN - "The Autistic Self-Advocacy Network"
Website: http://www.autisticadvocacy.org/

autistics.org: "The REAL Voice of Autism"
Website: http://www.autistics.org/


GRASP- "The Global and Regional Asperger Syndrome Partnership"
Website: http://www.grasp.org/

Wow! This post should be a sticky.

So you're determined to move on with this right now. Okay maybe this isn't a bad way. Here's some more for you. Not all of them official organisations, but neither are autistics.org or apana. And if AFF is counted in, so should WP, but then again there may be dozens of forums that serve similar functions on a smaller scale. Who knows, some might even have more active users than AFF and WP. It's quite hard to draw boundaries.


United Kingdom
==============

AFF - "Aspies for Freedom"
Website: http://www.aspiesforfreedom.com

Autscape organising committee
Website: http://www.autscape.org/

Autreach
Website: http://autreach.backpackit.com/pub/1382191


United States of America
==================

AAGW - Asperger Adults of Greater Washington
Website: http://aagw.net


Switzerland
==================

WAA - Worldwide Autism Association
Website: http://www.beepworld.de/members61/autism_waa


Germany
==================

Aspies e.V.
Website: http://www.aspies.de

Aspergia e.V.
Website: http://www.aspergia.de/


Finland
==================

ASY - Suomen Aspergeryhdistys
Website: http://www.kolumbus.fi/asperger/

Also US-based:

Academic Autistic Spectrum Partnership In Research and Education (AASPIRE)
http://aaspireproject.org/index.html

KenG, do you mind if I make a copy of this list to put on my own forum, Gestalt? It would be great to have.

Version 1.0.1 of "The Global Registry of Autistic-Run Organizations" has been compiled.
This version covers the additional following autistic-run organizations: AFF, Autscape, Autreach, AAGW, WAA, Aspies e.V., Aspergia e.V., ASY, AASPIRE.

If there are any errors within version 1.0.1 of the registry, please report them to this thread.
If there are any autistic-run organizations which are missing from version 1.0.1 of the registry, please report them to this thread.

"The Global Registry of Autistic-Run Organizations" is an "Open Source" project.
Therefore, feel free to copy/distribute the registry to any website, mailing list, magazine, etc.

The Global Registry of Autistic-Run Organizations (v.1.0.1)
(compilation date: 5th of March 2008).

Belgium
======
PASS-partout.be – "Zelfhulpgroep voor Personen met een Autisme Spectrum Stoornis"
Website: http://www.pass-partout.be/

Finland
=====
ASY - Suomen Aspergeryhdistys
Website: http://www.kolumbus.fi/asperger/

France
=====
SAtedI – "Spectre Autistique troubles envahissants du développement International"
Website: http://www.satedi.org/

Germany
======
Aspies e.V.
Website: http://www.aspies.de

Aspergia e.V.
Website: http://www.aspergia.de/

Israel
====
ACI – "Autistic Community of Israel"
Website: http://aci.selfip.org/

Netherlands
=========
PAS – "Personen uit het Autisme Spectrum"
Website: http://www.pasnederland.nl/

Sweden
======
OA – "Organiserade Autister"
Website: http://www.autister.org/

Switzerland
=========
WAA - Worldwide Autism Association
Website: http://www.beepworld.de/members61/autism_waa

United Kingdom
===========
AFF - "Aspies for Freedom"
Website: http://www.aspiesforfreedom.com

Autreach -
Website: http://autreach.backpackit.com/pub/1382191

Autscape organising committee -
Website: http://www.autscape.org/

APANA – "Autistic People Against Neuroleptic Abuse"
Website: http://apana.org.uk/

ARGH – "Autism Rights Group Highland"
Website: http://www.arghighland.co.uk/

LARM - "London Autistic Rights Movement"
Website: http://uk.groups.yahoo.com/group/politicsofautism/

United States of America
=================
AAGW - Asperger Adults of Greater Washington
Website: http://aagw.net

AASCEND.net - "Autism and Asperger Syndrome Coalition for Education, Networking, and Development"
Website: http://www.aascend.net/

AASPIRE - "Academic Autistic Spectrum Partnership In Research and Education"
http://aaspireproject.org/index.html

ANI - "Autism Network International"
Website: http://ani.autistics.org/

ASAN - "The Autistic Self-Advocacy Network"
Website: http://www.autisticadvocacy.org/

autistics.org: "The REAL Voice of Autism"
Website: http://www.autistics.org/

GRASP- "The Global and Regional Asperger Syndrome Partnership"
Website: http://www.grasp.org/

Hi Emily,
"The Global Registry of Autistic-Run Organizations" is an "Open Source" project.
Therefore, feel free to put it on your own forum, Gestalt.
The most recent version of the registry is v.1.0.1

KenG

Excellent:

Gestalt
http://asdgestalt.com

May I ask a couple of questions? I like to try to categorise these organisations, although there may be no satisfactory way to do it really.

Is AASPIRE meant to be a permanent organisation, or a project with a defined lifespan?

Does it have a board or other decision-making structures? Is the proportion of autistic people among the general membership / participants defined? If there is a board or committee running it, what is the composition?

Personally I have been defining "autistic-run" as approximately 50 % or more autistic, at least in decision-making, but it's not always easy to figure out whether this applies or not. AASPIRE seems to have "community members" from various groups of people, but that's all I can find out from the website.

Overall, looks like a fantastic project, of course.

that list is ok but why exactly is wrong planet not listed? it's also an organization; not just a random website on the net.

Well I said somewhere that if AFF is on the list, so should WP be. But I have had difficulty figuring out which ones consider themselves organisations, and which ones would also be considered such by any casual observer.

To be an "official" organisation, any group should have a founding date, clearly defined membership, and decision-making structures. Is there an actual WP association, society, anything like that? Who's the "we" who will enforce copyright, for example, if this were necessary? Is there a board somewhere, a democratic structure? I'm sorry if I've missed something obvious, haven't spotted that type of information on this site. I see Yellow Sneaker Media, LLC at the bottom of the page, but I don't know what LCC stands for.

WP is of course very well organised and serves anyone who turns up here in many ways. I don't mean to belittle that. I would just like to know how I could accurately describe it, if anyone asks why a discussion forum is included on a list of organisations.

I can only speak for myself of course, don't know what KenG's reasons are for omitting WP.

I didn't know WP was an organization, but if it is then WP will be added in version 1.0.2 of the registry.

Yes, you may.
I don't know. Maybe sophist (or somone else) knows.
I don't know. Maybe sophist (or someone else) knows.
I don't know. Maybe sophist (or someone else) knows.
I don't know. Maybe sophist (or someone else) knows.
Personally, I define "autistic-run" as *exactly* 50% or more autistic in decision-making.
(if it is 49% autistic in decision-making, it does not belong into the category of "autistic-run")

Not in Canada, you say? topic

I have been loathe to find anything in Canada specifically for Autistic Adults. There was something in Montreal at some point, for adults, but no longer. There was some forum thing called Aspergers.ca but I found it wanting, and it was not an organization. So far we are listed under Mental Health/Special Needs. I wish there was something specifically for us.

Sorry, I am not good at doing the group thing.

I am getting involved in the research part of it, but it is meant to be an ongoing group. Currently, there are two projects for which we are applying for grants and then will likely be designing a third very soon. However, it will (hopefully) be/remain a permanent organization which will continue to perform and help organize research which benefits auties, especially adult autistics since we've had so little focus.

It is currently set up in mailing lists, and these are divided by the type of involvement the responder wishes to have in the organization. For me, I am signed up especially to the research mailing list because I wish to be involved in that (as well as some general announcement mailing lists). But there are also two other main mailing lists involving networking and the computer tech stuff.

I believe there is no set "board". The original idea involved a board, research + general lay members (autistic) + nonautistics, but this wasn't working so well as I understand it. So now there isn't really a board; just a group of people, mostly autistic, who wish to carry out and support advocacy-related autism research. In future, I don't know, a board may become more necessary. But given the group's small size, I think such division was impeding communication.

Without an official board, there is no stipulation of "such and such % needs to be autistic". Although I would imagine that were there ever to be a board, direct autistic involvement is central to the group philosophy and would naturally be a given.

That clarified things a lot. I would categorise you guys together with ARGH, Autreach, autistics.org and other small (but significant) groups with loose organisational structure.

When there is a board, it often ends up being just a formality anyway, but it can affect the way the rest of the world views the organisation, at least in some countries.

By the way I'm working on an MEd in special education at the University of Birmingham, UK (distance ed). For my MEd thesis, I'm comparing concepts of empowerment among autistic adults and professionals, and trying to figure out respectful, empowering ways to teach autistic adults facts about autism. I don't have a lot of time for networking, but I'm going to stop by and see what AASPIRE is doing sometimes, and maybe give a description of my research if anyone is interested.