We should make our own autism organization!

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That way we could control who the funding is going to,so that every person on the spectrum that is a part of it would get SOMETHING!And it wouldn't all just go to a cure!
(although to accommodate the people that want a cure we could possibly do some kind of research or something)

Or maybe we could dedicate it to removing the bad stigma around us!! !
wouldn't that be nice?

what are your thoughts on this?

Last edited by demoluca on 22 Mar 2008, 12:01 pm, edited 1 time in total.

Yes, I think it would be cool for Aspies to create their own organization to raise money and appropriate it in ways they feel will best serve their community.

I don't think you will get many donations if the simple goal is to give every Aspie money, however. Donors don't like to give direct financial aid. They like to feel they are doing the equivalent of "teaching someone to fish." The list of goals may certainly include financial support in certain areas of life many Aspies have trouble with, however. Perhaps providing organizational assistants, things like that. Shoot, you all describe in this thread what sorts of services would improve your life, and enable you to become a stronger asset to the community.

The whole "pay it forward" concept is another powerful one to play upon when looking for donations, which is why I suggest you also consider how what will help you, will ultimately benefit the community.

Last edited by DW_a_mom on 22 Mar 2008, 12:04 pm, edited 3 times in total.

Forming our own organizations, yes.

http://www.autisticadvocacy.org/

and recently announced first international affiliate: http://groups.yahoo.com/group/ASAN_AU/

If you want a job done properly, do it yourself.

I think that it would make sense for us, to have our own organization.

We can use the money, towards things that will benefit us.

More important, we can have input into making sure that governments and research groups spend community money wisely.

I am a member of the most forward thinking Autism Advcacy group. It provides 24/7 support worldwide. It has improved the lives of thousands, and brought them the knowledge that they are not alone, that there are many others, and some in the group will have very close best answers to any problem you might run into.

It's called, Wrong Planet.

The service has been directed to inside my head, the latest step in service delivery. It is a very frontline service organization.

It works, it took three years for for a few original posters, CockneyRebel, Et al, to bring in 7,000 people to hear what they had to say, then me by accident. In the next year 10,000 have joined.

This direct service model is working.

Proof is, people who use this service will give it money. I am cheap, have economic needs of my own, but I chipped in to support Wrong Planet. Many did, which is proof of value recieved.

New folks will never know of the 11 PM crash, performance is up with doubling loads.

Alex Plank has done a great service to us all.

We in turn have provided a great service to parents, teachers, friends, co workers, employers, educating them about the Autistic world. What is known is not feared or hated.

The world view of Autism has changed because of Wrong Planet.

It now has broader support than fund raising organizations, and counteracts their propaganda that we are not worthy of being born.

It has brought out that Autism is related to advances in Science, the Arts, and human progress.

It has changed from a disabled/disability model, to a natural part of the human range, just in the year that I have been watching.

The leading thinkers in the field have been brought out, given world exposure, and our support.

I mention Tony Attwood, but he is not the only one who is seeing that the Autistic Spectrum spreads far beyond the Clinical, as defined by an Impairment.

It is now coming out that there and many many more Half Aspies, where the thought pattern is the same, but has not lead to Clinical Impairment. The whole spectrum is perhaps 10% of the population of Europeans.

They tend to be an educated lot, are known for developing technical skills, having a high functional IQ, and low functional social skills.

As only about 25% reach a University level of education, and they keep the world running, it seems that 40% of that group has some Autistic traits.

Semlena recently gave a talk to 100 professionals about Autism. She had a very strong response, and will likely give more talks. She said, "perhaps they see the same traits in family members and co workers," but my view is they saw the same traits in themselves.

We are the part of the ice burg seen. 90% is hidden, but it is there.

Descriptions like Geek Syndrome, The Engineers Disease, point to Autism in the Professions.

Our observations and answers work for them. We are strong examples, but someone with a quarter of the same problem, has the same problem.

The Class, Very High Functioning Autistic, VHFA, is large, professional, the world depends on them, and we can help them.

They have the same social disconnect we do, no idea about the behavior of the majority. We can define that, and be their support group. There is us, and and the world of social chit chat, talking football, TV, and the top functioning humans, are between the two worlds.

The ends of the spectrum are an Autistic Researcher with IQ 160+, and Joe Six Pack, sports fan.

Who's opinions will the VHFA's listen to? We speak to their innermost thoughts.

We are not all brains, and those only part time, we are very close to VHFA's. We share the same life problems.

It has been said many times, I went from the wierdist person I knew, to being an ordinary Aspie in no time, on Wrong Planet.

Once you discover there are many people like yourself, it stops being a personal load to carry.

"Well that explains my life!" Has been a common response.

Perhaps 5,000,000 fit the Dx. That leaves 50,000,000 who fall short, or fit it, but have gotten by with out economic impairment. Money cures lots of things.

Will they not feel the same sense of relief we did in discovery of the reason?

Autism is not a disease, only a differance. It can be a disability, which is shared with the VHFA's. Mostly it is in the social disconnect, of feeling that you are the only person in a crowd. The VHFA's share this feeling.

Wrong Planet is open and welcoming. The self Dxed, Half Aspies, people who claim to be NT, I have my doubts about them, who all seek to hear the Wrong Planet message, different, and enjoying it.

I do not see a wall between us and the ten times as many who might miss one test question. I see Autism as a personality type, which is fairly common.

How many have said, "I read Wiki on Asperger's, and it had everything about me but my picture?"

Half Aspies will have the same identity, when it is brought to them.

The path to acceptance is to include the much larger group that has to be accepted.

Self defining the Autistic personality type, and how it benefits the world, is our goal.

Its not a competition. There is room for all kinds of advocacy and some of that is for people to have direct influence into political decisions. I think places like WP are important. I have been a member of many online groups for over 17 years and do not feel that any are superfluous. The only thing I suggest is that we accept each others needs and differences and remember that united we are a force.

I have no problem with the fact that the autism continuum means that there are people who do have autistic characteristics but who lack the intensity required for diagnosis. I hope that working towards an autism friendly world will benefit them too.

Am think it's good-great idea the more of them the better.

What do mean by organisation? something like http://www.nas.org.uk and http://www.autisminitiatives.org/ -that offer a lot of services such as residential home and respite placements,day centres,schools,social/support groups etc or one that is only for Autism rights?
Am would like to see an organisation- similar to the NAS,but who are also able to offer alternatives of all suitable services to lf Auties with high complex needs.
People assume anyone with classic autism get all the support and it's only aspies who have problems getting it,am was unable to get a placement at a NAS LFA day centre even after getting the funding off the council and a tour of the place,as they said am was too HCNs for it.
As the choice from Autism organisations isn't currently there,am get put in severe LD res. services which are very limited in autism and HCNs training and understanding-a lot of horrible staff and unsuitable places-there should be an Autism service there.
Am would like an organisation that recognises the need for services that are tailored to Auties and Aspies and not just tailored to the diagnostic criterias.

Am wonder whether an Autism organisation could even have their own dentists and hair dressing places [both major problems for a lot of people on the autism spectrum,child and adult],and have homes all over the country where Autistics [of any age] and their families/carers/support staff can go for holidays in them-some do offer this but usually only for children.

And am would like an Autism organisation that has the input from LFAs and MFAs,not just from the high functioning end so are all represented.

Am would rather it be one for supporting the Auties and Aspies who do exist,rather than researching for those who don't.

sure!

that would be a great idea!all of those are wonderful!thank-you!

maybe we could like..make one of those so-called "care homes"...only better!more like a town for people with anything on the spectrum really!that way we could make sure that the police have proper education on it,as do the doctors and everything!

That would be so awesome, I really wish their was a mianstream organization run by aspies and people from all parts of the autism spectrum.

Inventor,

Great post.

When I first joined WrongPlanet I was a mess. My first son had been diagnosed with Asperger's and I didn't know much about it. I was scared that he wouldn't be able to reach his potential. I was scared that my former happy, sunny child had disappeared, to be replaced by a very anxious, unhappy boy. I was suffering clinical depression and on anti-depressants.

I came to WrongPlanet and immediately many members immediately stepped in to mentor me and my sons through. In the early days KBABZ, Inventor, Lau, ZanneMarie, Sinsboldly gave my sons and me heaps of good advice.

I hate naming names because so many people have been helpful. I'm just talking about those early days. My son also got heaps of excellent support from LabPet, Whiteskunk, Sopho, Kilroy, Hartzofspace, Deaconblues, Cockneyrebel.

Then another son of mine was diagnosed with Asperger's. The first thing he did was make an announcement on WrongPlanet. The thread was full of people congratulating him and encouraging him.

We've had excellent therapy from an Autism Clinic - both my sons and me. I had 6 months of therapy and am now off my anti-depressants. Who did I get the best advice from regarding medication? Chuck, a pharmacists, gave me heaps of advice and encouragement!

We had therapy from an excellent clinic, but we wouldn't have made such leaps and bounds without WrongPlanet.

I was priveledged to meet 7 WrongPlanet members in London. This was an amazing experience and another turning point for me. Meeting these incredible adults made me so confident about the future for my boys.

Inventor, you've made me realise I need to pull out my wallet and donate to WrongPlanet. I will do it when I get back from our holiday at my Mum's place. How can I not donate to such a fabulous organisation.

WrongPlanet just keeps getting better and better.

Maybe it's time we all donated what we can to enable Alex to do more lobbying. Imagine if WrongPlanet could afford to pay someone a salary to lobby full-time! I don't know that Alex wants to do it because he's studying. But it would be great to have a person in this role.

As Inventor mentioned, I gave a talk at work. I'm not getting much work done lately because my colleagues keep stopping me in the corridor asking me heaps of questions about Autism/Aspergers.

Wouldn't it be great if there was a way that WrongPlanet could support members so that they could educate others under the WrongPlanet banner. WrongPlanet pamphlets, WrongPlanet powerpoint proformas that people could modify for their audience etc

Helen

If only we could make this a reality

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If only we could make this a reality[/quote]

We can make it a reality. people who are able to can directly lobby governments. After years of trying, I am finally involved in government consultation. In USA one group is advising a university on ethical research as it relates to autism. A USA group had a huge advertising campaign stopped because of its negative stereotypical view of autism. The thing is that people need to join advocacy groups even if they cannot face personal contact with those in power. When you say you represent an organization with 1000 members you have much more clout than if you represent yourself.

People cannot leave it up to one or two individuals to make a difference. They need to back them up.

Most countries around the world already have organizations which are fully operated by autistics. Most of them are listed in the "Global Registry of Autistic-Run Organizations": http://www.wrongplanet.net/postt58920.html