Calling All Advocates

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Dear fellow advocates,
Whenever you are making public statements about the autistic community, please include the following information -

The autistic community includes five key organizations:
ANI - "Autism Network International" (lead by the autistic Jim Sinclair, in USA). ( http://ani.autistics.org/ )
ASAN - "The Autistic Self-Advocacy Network" (lead by the autistic Ari Ne'eman, in USA). ( http://www.autisticadvocacy.org/ )
WP - "Wrong Planet" (lead by the autistic Alex Plank, in USA). ( http://www.wrongplanet.net/ )
AFF - "Aspies for Freedom" (lead by the autistic Gareth Nelson, in UK). ( http://www.aspiesforfreedom.com/ )
LARM - "London Autistic Rights Movement" (lead by the autistic Dr. Roderick Cobley, in UK).( http://uk.groups.yahoo.com/group/politicsofautism/ )

Thank you,
Chen Gershuni (aka KenG)
Spokesman
ACI - Autistic Community of Israel

P.S.
Sorry to have listed WP only on third place, but ANI and ASAN seem more central to me. If you think otherwise, go ahead and change the order of the list. But please, do list all five organizations!

I would like to know what the criteria are for considering these "key" organisations. Also, why not include GRASP, AASCEND, APANA, SATEDI, WAA, autistics org, Organiserade Autister, Aspies eV, Aspergia eV, PASS-partout, PAS Nederland, Autism Rights Group Highland or Suomen Aspergeryhdistys, just to name a few?

I feel like I've met a celebrity, having sat next to Ari at lunch once (he really is a great guy, very active on autism issues).

p.s.: I think that your list covers the main sites.

Dear Heta,

ANI is a key organisation because it organises Autreat.
ASAN is a key organisation because it initiated and lead the successful battle against the "Ransom Notes" campaign.
WP is a key organisation because it has over 17,000 members.
AFF is a key organisation because it has over 7,000 members and because it initiated "autistic pride day".
LARM is a key organisation because of the geographical location of its headquarters - London.

Organisations which are based outside of USA/UK can not be key organisations within the global autistic community.

If you believe any of the organisations above is *not* a key organisation within the global autistic community, then please explain why you believe so.
If you believe there are additional key organisations within the global autistic community, then please specify them and explain what turns them into key organisations.

Cheers,
Chen Gershuni (aka KenG)
Spokesman
ACI - Autistic Community of Israel

There's also local adult autistic groups that do great things, but do not get the national recongition. Or, they aspire to do great things but lack the resources. For example, there's the Greater Washingtion Adult Austistics in Washington, D.C. (GWAA). I have met both Alex and Ari through this group.

GWAA has both a president, a vice president, AND a librarian (which was my role until graduate studies took over my life).

I am hoping to become a more active member once I complete my graduate studies and have more free time. Right now, I am looking for employment and finishing my last semester at U of M. In between it all, I volunteer on another board and welcome parents of children newly diagnosed. I do a LOT of work, but it never seems to be enough lol.

As an international meeting I think Autreat is important, yes. But so is Autscape. I believe both essentially have small groups of active organisers handling most of the work. Autreat is older, sure, but if you want to be logical and consistent, shouldn't Autscape organising committee be included?



Is this in any way signifigant for the majority of autistic people in the world? From where I stand, it seems that these nasty campaigns are a peculiar cultural thing specific to the US and UK, and that they don't concern people elsewhere that much.



If you only look at the number of registrations, you count lots of people who have maybe dropped in once or twice. Some of them may not have posted even once; some may have found that they don't like the forum and the ideas it represents.
You would be counting me in, for one. I like this place, but I have not registered to be a member of an organisation called WrongPlanet, I have registered to chat occasionally on an internet discussion forum. In the same way, I have registered on numerous other websites, without joining organisations in the process, and without signing to any kind of program or philosophy.

The number of active participants would be a better indicator of importance. I'm sure this is pretty high at WP too, but they are still not members of an organisation unless they actually join one.



Again, by your criteria I would be an AFF member. I can assure you I'm not.



To me that does not seem sufficient.



In that case, I don't think you should talk about "the global autistic community". Most of the globe would not wish to be members on such terms. Why not just call it the USA/UK autistic community?



I do not believe that there is, in any meaningful sense, such a thing as "the global autistic community". It seems to me that there are numerous local and national, and some international communities, but no general networking, knowledge of each other or agreement on shared principles that would allow any of us to speak for all. I do wish that real global connections will form to allow us to find consensus, or maybe fail to find it but at least become more aware of the truly global picture.



I don't think that I can name key organisations any more than anyone else, for the reasons stated above. I can list a few examples of things I find pretty impressive though.

Satedi, I believe, is developing into the first international non-English-speaking organisation of autistic people, connecting people from several French-speaking areas of the world.

APANA has successfully influenced legislation in Britain to improve the situation of autistic adults in institutions and those needing mental health services.

Organiserade Autister is setting up as a national umbrella organisation, refusing membership of the existing national autism organisation because of ideological differences. I don't know if they'll be successful, but it's a remarkable goal.

Worldwide Autism Association is not quite worldwide, but I believe it's the second oldest organisation of autistic people in the world, it has members in several European countries, and a newsletter coming out in two languages.

In Finland we have set up an empowerment project, initiated and planned by autistic peer group leaders, and obtained public funding for it to run under our national autism organisation. This means we have been able to divert some of the money officially designated in our society for helping autistic people towards acitivities and issues that we consider important. In this we follow the Swedish example. This channeling of funds and resources seems more important in our societies than the kind of media visibility gained by the organisations you consider "key". Does this mean we are not part of "the" global community? If so, maybe we don't wish to be.

Heta, thanks for that considered post. I've thought for sometime there's far too much internet talk and too little real world action. I am a member of the UK's National Autistic Society [ www.autism.org.uk ], a mainly NT organisation, but it spends aroun £100million a year for the benefit of autistics. I've yet to hear of an autistic led organization spending as much as a pound on autistics. We're not going to be taken seriously until we do.

[quote="Zarathustra"]I've yet to hear of an autistic led organization spending as much as a pound on autistics. We're not going to be taken seriously until we do.[/quote]

We are working on getting those funds so we can spend them to those ends. Being relatively new and volunteer organizations, we are at a disadvantage in arranging that. However, some of our efforts result in funds being released. For instance, ASAN's efforts in New Jersey resulted in a pilot program within the NJ Department of Human Services to provide better services to adults with the Asperger's diagnosis (ASAN's preference would be for that to be expanded to all autism spectrum diagnoses). ASAN also works to determine how funding is used to get people out of institutions in New Jersey and was just involved, thanks to ASAN's volunteers, in a recent effort to get a stronger anti-bullying law in Maryland. I believe there is also involvement in Pennsylvania and a few other locations on similar efforts. Hopefully though, autistic-run organizations will start to get the fundraising mechanisms in place to provide more direct services and support to autistics. We should be able to develop the institutions to take care of our own.

I do also think that the NAS, as far as NT-run autism orgs go, is relatively good as compared to some of its American and Canadian counterparts. If I was in Britain, I'd be working on both creating autistic-run groups at local and national levels and working to improve NAS's accountability to the autistic community there. In fact, I may well devote my energies to that, should circumstances ever find me with the capacity to exert influence in that part of the world.

Let me add though, that I think that there is no reason that many of the other autistic-led organizations shouldn't be included on any list that's put together. Any group that's active and that is committed to our ideals should be a welcome voice. I know that ASAN would be only to glad to work with our European, Asian and Australian counterparts, for instance (amongst others). That's something we're turning our attention to.

I don't believe there needs to be only one autistic-run organization, although having some of these groups that already exist acquire more of a global presence could be positive - which is why we're currently working to develop several international chapters, two of which we'll be announcing in the next month or two. Still, there will always be (and should always be) multiple organizations out there. For instance, ASAN draws much of its inspiration and ideology from ANI, but does something very different from what ANI does. We all benefit from each organization working where it is strongest - with mergers where it makes sense, for instance to create global presences or to expand the strength of our voice in public policy advocacy.

By the way, I'm a big admirer of APANA's work as well - and I am really hoping to get the chance to attend Autscape this coming summer, if I can make it.

Of course the finnish autistic community is part of the global autistic community, but the global media is dominated by the us/uk media alliance.
after the us/uk media alliance will report about the us/uk autistic community, it will be much easier for the finnish autistic community to get the finnish media's attention. don't you think so?

Worldwide Autism Association is made of 'people with autism'.
I am not a person *with* autism.
I am an autistic!

AutisticAdvocacy, Thanks for your posts. Perhaps I should have qualified my post by stating "UK based autistic led...". The NAS does have Autistics within its management, and it welcomes and supports them. As much as I like the idea of an exclusively autistic led and run organization, I think the AS/NT combination in organizations like the NAS makes for a powerful and effective lobby.

I do not really feel there is one autistic community in the world...

There are many differences on the autistic spectrum. Some people could not life without support from the government and others earn their own money.

I have been posting on Autsider, the biggest Dutch autism forum, that has many people living on government support and not always able to function in a full-time job. So I was not always feeling represented by the opinions on that forum
Wrongplanet however has a lot of people that study or work full-time, that is really different. But are the opinions similar to the other organizations in your list? Probably not.

So it would be a bit strange to consider it ONE community. If you said communities, instead of community it would be more correct I think.

I'm sure there are plenty of inconsequential things in London. Do all of them become important because of their location?
But how does LARM stand among these organizations in the UK? Perhaps you mean that they're a key organization because of their status in the UK, while they, perhaps, wouldn't otherwise have that honor on the global level?



That's absurd. There are autistic people everywhere, and the US/UK organizations can't help all of them.



That's a silly way to look at it. I assume you are in fact a person. Perhaps one would like to identify with humanity more than with a particular neurological configuration. But I guess if you really feel the need to define yourself according to that label...

No sillier than referring to oneself as a man as opposed to an individual with male-ness - or as a Jew as opposed to an individual with Judaism - or as a gay person as a opposed to an individual with homosexuality. It's an assertion that the autism spectrum represents an intrinsic and pervasive part of who we are - not the totality of who we are, certainly - but trying to pretend that there is a "normal" person somehow hidden "underneath" the autism is truly not only silly, but problematic, in that it encourages some fairly significant atrocities. Furthermore, by placing neurology within the spectrum of legitimate human diversity - alongside race, religion, sexual orientation and other similar categories - we work to truly combat stigma. I respect, certainly, those parts of the disability community that prefer person-first language, but at the same time, I also respect the decision by the majority of the autistic community to prefer "identity-first" or "identity-inclusive" language instead.

Isn't that the case in any community though? For instance, there is much talk about the Muslim community, despite the huge differences of opinion within Shi'ite and Sunni Islam, or the Jewish community, despite the significant cultural and religious divides that exist between Sephardic and Ashkenazi or Orthodox, Conservative, Reform and Reconstructionist. Social, cultural and practical divides and differences of opinion are part of every community. Why should autistics be any different?