Do we need a new autism organization ?

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Neurotypicals may question societies rules but only if the group they belong to questions societies rules. Therefore I present you with a challenge. Why don't you try visiting various churches and get their opinions about Communism. Point out to them that as recorded in the book of Acts that the members of the first ancient church held all property in common. And report back to me whether you get a logical response or whether you get a response based on what the group thinks.

@scubasteve: I like very much the idea of a professional and a mentoring network with a focus on education.

@Sparkstorm: I don't plan to do anything in France. Autism is a lost cause here to be blunt. Unfortunately, since I don't have a job, I have spare time on my hands to try to launch a project. Yet, it is much harder to develop an organization with real activities and members. Finding the people, the funds and the strategy ain't easy. Plus, as spectrumites we are not always very good at team building.

@btbnnyr: I agree there is too much talk in advocacy. I think part of why organizations are so focused on talk is that it is cheap, easy to do and gives some PR exposure. Plus, it is something socially accepted by the rest of the population and it helps the egos of the most vocal spokespersons. Doing things requires money.

@YourMajesty: I agree with the need to explain what is autism and how diverse it is. Yet, the problem is that to get the point accross in the public you need to keep the message simple. There are tradeoffs everywhere.

Decided to go a head and do a little investigation into these sites - the first two sites are a possibility though they do have some articles that are on the theme of poor sick us - we need lots of special help. However, the third suggestion here, so doesn't get it that they put the "S" word right in their name. There other sites as well http://aspiesforfreedom to name another (mostly just an on line discussion site) - and lets not forget WP.

Yes, these sites exist - many are completely given over to accepting the NT norm and viewing us as the sick ones and the sole source of the problems we are having. I am looking to something that is much more structured like one of the other civil rights groups work.

I wish I could go into more details at this time but it is quit late and I am trying hard to nod off here. Tomorrow I should be able to give a more detailed view.

You can cross the channel to UK, where a few organisations by Autistics already exist:
Autistics Rights Movement UK: http://www.autisticrightsmovementuk.org/
London Autistic Rights Movement: http://www.londonautisticrightsmovement.org/
Autscape: http://www.autscape.org/
Autistic Rights Group Highland: http://www.arghighland.co.uk/
Autreach: https://autreach.backpackit.com/

Autreach is aspiring to become a pan-European network.

Even better if there were employers involved too. It seems to me it's possible it could be a unique recruitment pool that certain employers might be interested in. Plus they like to dole out money for PR sometimes. Google comes to mind, perhaps.

Thank you guys for your opinions and research efforts. It confirms my feeling that the autism non-profit "market" is very crowded already. Yet, strangely, none of us seem really satisfied. The autism "market" seem dysfunctional. Maybe we don't get involved enough in these organizations to influence them or to keep people accountable, or they don't listen to the need of the community ? I am a bit angered by the possible outcome of DSM V. Asperger might somewhat disappear and services may be cut back. Every autism organization has lobbied against the changes. Yet, nobody is able to really fight the insurance company lobby. Many of us keep complaining about Autism Speaks but I wish to see another autism organization professionally managed with deep pockets and highly skilled PR staff. It brings us back to backers, money and strategy as a community.

@MrPickles: I agree we must put people's skills forward instead of lamenting. Unfortunately, having autism is not rosy for most people (especially parents) and compassion makes people donate money too. Thus, I assume there is a financial rationale behind these strategies. You have to understand that non-profit are somewhat like businesses, except selling values and projects instead of goods and services.
The aspergerish mindset (including mine) being black and white at times, It makes it hard to negotiate principles and we tend to forget such things.

@KenG: Thank you for the list. The problem of getting involved in another country is a cost problem. Either it becomes your job or you get a job that allows time to volunteer (eg academia, teaching).

I thought I might be useful in an organization and get a salary out if it but I fear it sounds kinda unrealistic.

How about starting a French chapter of the ASAN?
They already have chapters in the USA, Canada and Australia.
I'm not sure if they could give you a salary nowadays, but perhaps in the far future...
I'm sure France could use its own chapter of the ASAN.

The ASAN, run by Autistics:
http://autisticadvocacy.org/

Actually, my idea was to move out of France. I don't know if you read about the problem of autism in France but it's far from pretty. If you have not, i recommend to read my post on wrongplanet's main page. Some parents and I evaluated the strategic opportunity to morph our campaign against the psychoanalysts into a new organization and we decided against it. France already has too many organizations with little to no money (even the largest organization doesn't have any paid employee) and no interest for autism or disability (discrimination is very very deep). Fragmenting an already extremely fragmented world would not be a good strategic opportunity.

When I see the high unemployment and the lack of adult services in the community in the US, I think some must team up to do really something about it. I have yet to find people able and willing to do something.

Out of curiosity: How do the French people discriminate the disabled?

To answer your questions :
* 75% of kids with autism don't have access to schools,
* Many kids are diagnosed at a very late age (6 to 10),
* Mainstreaming is not the norm, and even separated from the regular special ed system,
* Some kids are packed in freezing cold wet sheets,
* People with autism have virtually no access to employment,
The list goes on

David

Then move to England.
Can't you to get unemployment benefits and disability living allowance in the UK? (under EU regulations?)

Thanks Ken. I have thought about it before but I have very few friends and contacts there. I would not relocate unless I have a job or at least very high probability of having one (like a promise).

In theory, EU citizens can settle anywhere in the EU. Some french families have settled in Belgium or Sweden to get better services. Yet, you don't get unemployment benefits if you have not paid in the country's system and allowance criteria varies by country. Your family and friends are back home so unless you are a dual citizen with families or friends in that country it is usually not a good idea. Plus, there is often a language barrier and paperwork is not transferable.

I had two opportunities earlier this past year. One was to go to Canada and the other was to go to the UK. In Canada, I emailed quite a few people and could not find a job, even though paperwork could have been relatively easy. In the UK, I could have studied autism at University but didn't find contacts or schools interested in having me work there and job prospects as a teacher seemed somewhat remote as a foreigner. Everybody favors their own citizens these days.

Back to an organization project in the US or Canada, seems nobody is interested. Oh well.

How about visiting Autscape 2012, in July:
http://www.wrongplanet.net/postt197496.html ?
It lasts four days, and you will meet Autistic activists from the UK, and from elsewhere in the EU.

Thanks Ken for the idea. I want to get money from a job, not to spend money on other's organizations lol. Nice way of subvertly advertise your event by the way. £200 is a bit pricey, that would be £400 with travel expenses as it is kind of in a remote place too. I noticed you have not published your programs yet either so we don't know what the speech will be about or who will be the speakers. Good luck with that event.