Do we need a new autism organization ?

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Hi everyone,

Some of you know me for my stand on the autism issues in France. After this event and the DSM V struggle, I believe in the need to build a new type of autism organization focused on promoting services and social inclusion in the US and abroad. I have been working on ideas. But right now, I would like to hear from you about your desires for the future of autism:

* Do we need for a new organization ?
* What should a new organization do or could do better than existing organizations ?
* Are some persons on the spectrum ready to get more involved in projects and in the decision making process ?

Sincerely,

David Heurtevent

It would be a good Idea to set up an organization that is controlled, run, and represented by people on the spectrum, so a more accurate portrayal can be made. It would be a good Idea to work with some of the NT Experts that you see representing other organizations, but not be controlled by them, as they can only relate to textbooks and outside experience, rather than personal experience.

* I'd appreciate a new organization with the task to represent people on the spectrum and their social and political interests. This would require self--organization.

* It should be less of a diplomatic peace mission and ingratiation toward NT's and their standards, but guided by own standards. NO whining in the style of "i want to be NT!"

* Yes, as long as it remains online.

We need to abandon this concept of neurodiversity. Neurodiversity teaches that our oppressors opinions are just as valid as the opinion of an autistic.

Oh so now all the neurotypicals are our oppressors? come on with all the complaining you do about how intolerant, judgemental and ignorant neurotypicals are you're not making yourself look much better then the neurotypicals that actually do behave the way you accuse them all of acting.

Would you prefer an Autism Supremacy movement and disposing of the pesky neurotypicals? Or maybe we need to cure the neurotypicals, you know try to make their brains like ours......because we can't have variation that would just be terrible.

Autism promotes variation and thinking differently. Neurotypicals promote the ideal of conformity.

Autism does not promote anything nor does being neurotypical.......those are just ways of the brain being wired.

My answer is - yes we need to build an organization run by us for our own benefit. We need an organization to advance our goals - not NT goals for us.

I can name a dozen goals we should be working toward. To name a couple - develop a standardized Identification protocol that can be administered by non-professionals or on line. It need not be acceptable to the medical community as it is to aid us in finding more of our kind and not for medical diagnosis. Another - build communities and local organizations where we can gather and be with our own kind. Yet another we need to start schools primary for Asperger's and Autistic children that is run by us and goes beyond crude attempts to force us into the NT mold that so many of the present programs and schools are all about.

To make this kind of stuff happen we need people willing to work, yes, work at doing these projects. A short time back I read a thread on WP of a bunch of posters that though someone should do a Aspie/Autie convention - but no one on the thread was willing to step forward and start the process that would lead to having such a thing come into being. - The thread has died out. Great Ideas and no action ends in nothing! Action without plans and goals end in nothing!

Now I am working toward starting some project to aid Asperger's as My son as well as myself are Asperger's - and I find woefully little is being done to make our lives better.

Building a organization to aid all Aspies in advancing their goals looks to be a great place to start. Anyone else willing to start building such an organization - pipe up here and we can get started.

I understand that the main demand is to have an organization run by and for people on the spectrum. I agree, it should be basic pre-requisite for any autism organization. ASAN and GRASP have done quite a good job at it, hence my concerns regarding the need for a new organization. You cannot just start an organization from mere ideas. You need to think in terms of strategy, fund raising, funding, PR, programs, etc. It's not different from any major venture project.

I am more appaled by fat cat wages in some autism organizations. Some leaders in NY are making several hundreds of thousand dollars a year ! What a shame when most with autism face long term unemployment or underemployment ! Wall Street mentality conquered autism.

@androbot2084: I don't think you can escape social norms. It is a framework to avoid anarchy. If you think about it the goods you buy or eat everyday or the internet you use don't come easy, someone has to produce them and to follow directions to do so. They require investments, time and labour and a structure to produce and to deliver them. Yet, I can understand the difficulty to cope with this framework and what sounds like "stupid rules".

@MrPickles: I agree that I see lot of "do this" and ideas and very few people willing to build something and to get involved. Maybe most persons on the spectrum have fear of NTs or reject NTs and are uncomfortable working at a team. There are couple auti conventions (Look no further than Autreat this summer in the US). I am more than willing to work with anyone willing to commit to a project and I note you might be interested.

Most I read here seem to choose a reclusive attitude toward NTs. Yet, it would be a major mistake. We could never engage the NTs with a reclusive attitude. The deaf community has learned it historically, so has the gay community. You must teach others how to accept you.

Yes, we need to join and reinforce the three American organizations which already exist:
* The Autistic Self Advocacy Network: http://autisticadvocacy.org/
* Autism Network International: http://www.autreat.com/
* The Global and Regional Asperger Syndrome Partnership: http://grasp.org/

Why only American? With the right backing, an international organisation could form. It might be a bit harder with France...
Also, I would agree with anyone who has said this already that we need OUR OWN REPRESENTATIVES, not people who think they understand us. We need some driving force, though. Wishing for it won't make it happen.

I joined GRASP, but I am not sure what eggsacly they do. I am going to start attending a monthly support group in my area.

I would like to join an autism organization that focuses on practical things like developing educational techniques and materials for autistic children or helping autistic people with functional or social skills learning or helping autistic adults figure out ways to support ourselves financially. For a lot of us, the problem is not not being able to learn or do something, but not being able to learn or do something in the standard ways. I am sure that some of us have figured out how to learn or do different things in different ways that work for the different minds that we have, and I think that we should share our accumulated knowledge and eggsperience in an organization that focuses on practical things that we can teach and learn to and from each other instead of advocating this or that to NTs to get acceptance or assistance from NTs.

I am bored with all the talk talk talk talk talk talk talk of advocacy from the autism organizations run by autistic people. I am an autistic person, and I only care about practical things, not talk talk talk talk talk talk talk, and I hope that the autism organizations can focus on practical things instead of talk talk talk talk talk talk talk.

I wish that there were an autism organization with a minority of autistic people who are moar socially active and adept and good at advocacy and talking and a majority of autistic people who are moar reclusive like me, but good at creating materials for education or functional skills or social skills.

Last edited by btbnnyr on 11 May 2012, 4:28 pm, edited 1 time in total.

So is that how neurotypicals think of us? That if an autistic dares to question a stupid rule that somehow society will fall apart in total anarchy? Maybe just maybe it is because of these stupid rules that society is in the mess that it is in.

Some neurotypicals question these things as well though.

I don't know an organization that represents me, the person with Asperegr's who still kinda functions, even pretty well, but has issues nonetheless. Many seem to focus on those who are completely impaired, and yes, they deserve a voice, but I'd like to point out that "high functioning" doesn't mean that I don't have a history of depressions and battle against anxiety. Let the world know that autism doesn't necessarily mean that you have grave apparent issues, because right now, I'm afraid of prejudgements like "having autism means you never take a shower".

An organization that shows the diversity of the spectrum.

I think it would be great if we had an organization of professionals w/ASD who work in a variety of different fields, and would be willing to help mentor children, teens and young adults w/ASD who are interested in their field. They could provide career advice, someone to talk to when they have noone to discuss their interest with, and most importantly a role model to show that people like them can be successful. They could also offer parents an adult perspective on what it's like growing up with an ASD, and maybe help them gain a better understanding of what their children may be feeling in certain situations and how they express themselves.