New kind of autism organization

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In the jer resigns from autism speaks thread, I brought up the idear of starting up a new kind of autism organization that focuses on making practical things to help autistic people, e.g. educational resources for autistic students.

I want to start up this kind of organization doing practical projects, because it is needed, and I also think that it is area not covered by current autism organizations like autism speaks, asan, or grasp, and its practical focus can use the skills of autistic people who want to help but can't do or don't want to do advocacy.

To start, I suggest getting together some people (can be online, no meet) to work on specific project, e.g. educational resources for autistic students.

Please discuss what to do and how to get this thing going in this thread, and please help in any form for any amount of time, if you think this is good idear. I am verry merry berry interested and motivated about this thing, and I always go after what I am interested and motivated to do, so this is for real, verry merry berry.

Very good proposal.

While the first focus area referenced in the OP is outside my expertise, I would suggest asking posters to provide stories, or discuss by PM, about which resources helped them, and which resources were not effective.

Are you still working on the wiki, agent? The wiki is good project for sharing information outside traditional advocacy.

I am willing to assist.

I recall Tuttle expressed interest as well.

I'm happy to contribute

I think this is a very good idea. While wikis are generally used for the release of information, they tend to be better for subjects that are already know. Perhaps a forum site for this purpose could be a starting point. Individual forums can be set up for research areas. You can have private forums where dedicated groups work on specific topics, while having open submissions by those who would like to contribute without a committed dedication. Polls can also be useful for research and testing as well. Releasing the developed topic then through a blog or wiki for application and refinement.

I would suggest formulating a basic modal of the NT and ASD perception and behavioural patterns. This is an abstract, and may seem as practically pointless, but is a basic reference point for practical research. Much of what I see that causes grief is misunderstanding. Both in how NTs interpret us and how we interpret NT. Most of the existing research is NT focused on trying to understand us. This is a comparative observation, based on the ordinary perception of “You're not like me. What's wrong with you?” While those in the field may argue that the purpose of this effort is to assist, not judge, so this is not really important. To a degree this is true, but the reality is that NTs are not going to do the translating. While some have an interest in ASD, the vast majority do not. They focus on their own lives and what is most relevant to them. The practical reality is that we must do the translating, and for this we need an accurate modal. The translations between NT and ASD are very often not simple word replacement. There are some fundamental differences in perception and prioritising. Often the translation between the two may appear to any individual as totally different, but for practical exploit they are the equivalent.

Ian Fords book, "A field Guide to Earthlings" addresses what you just mentioned about the misunderstanding of NT intent.

He will be speaking on this topic, as well as his plans to create a place for autistics in N.M. at AutHaven February 22-25 in the mountains 35 miles west of Denver Co.

We will also have a workshop on our plans to initiate an autistic community within an already existing community in Thornton Colorado.

Kathy Lissner Grant, one of the 3 founders of ANI [Autreat] will be speaking on access to services and on sexual abuse against autistics.

In addition, there will be a trip to the Denver Aquarium. For the $100 per person charge, lodging [shared rooms] all meals, workshops, and trips included.

I know I sound like a broken record, but we really need to pull together and get things started. pm me if interested.

Specifically, what sort of assistance for education for autists are you talking about? We, as you know from our pm's a few weeks ago concerning AutHaven, are taking a holistic approach. As far as education assistance, other than making sure that autists are aware of various programs, have JUST started working with different agencies about scholarships.

My son was offered several scholarships. Every one of them was contingent on my son attending school FULL TIME. Since my son, like many other autistics, is unable to handle a full-time academic schedule, he had to turn the scholarships down.

We are approaching different groups that offer scholarships, about offering them to people who cannot attend school full time. We have actually only met with one group who is already agreeing that they should make exceptions to the full-time rule, but we there are thousands and thousands of groups that could be approached. All over the world. And guess what? People uncomfortable with in person meetings could at least initiate interest through e-mails.

There are so many things we could do to assist in education of autistics, but, we have to work together.

I am thinking about educational materials for autistic students, e.g. ESL materials that helped me a lot and taught me language, speech, and communication when I was eight years old and were what I needed to develop delayed language functions.

Tuttle mentioned in other threads that she has been tutoring autistic students in math, so I am hoping that we can work together to create educational materials in math in which some autistic students struggle with as much as some struggle with language.

I forgot to mention a few things. Per the scholarships, most organizations who pass them out also take into account outside activities. Consideration for flexibility in this area should also be requested.

Because of his neurological pain and profound Tourettes, my son was home-schooled. When he was ready for trigonometry and calculus [truthfully, anything beyond first year algebra] I was clueless and hired a young man from the local high school. One, he was extremely high functioning autistic. Autistics teaching autistics, in my sons case at least, worked out well. [ one thing simpler to initiate in our intentional community within an established community] Also, though we paid his tutor, he informed us that he would have been willing to do a certain amount of the tutoring at no cost because one of the schools gradution requirements was a certain ammount of volunteer work. He told me that many schools are now adding volunteer work as a requirement. Perhaps we could get in touch with schools and let them know of autistic young people who could use some tutoring.

Last thing. My son suffered significant brain damage from his seizures and needed to get a GED. Studying from the GED books with others helped him get through it, as well as helping the other kids. [yet another reason my main focus is on an autistic community within an already established community] I think matching autistic kids together to study could help many.

Btbunny, like you I am a member of a GRASP group. Working under the umbrella of your GRASP group, which is an established, non-profit organization, could save you the expense and headache of starting your own non-profi,t,,at least initially. [ that's what we are doing. all of our personal money is going into the retreat ,that, will be affordable and will hopefully snowball into something amazing]

I had some other ideas, but I don't have the energy [chemo brain] to list them right now. If I wait until tommorrow, iy will bump this back up, which is a good thing.

I heard that grasp has contract with nyc public schools to provide information about autism for teachers to understand how to work with autistic students.

Besides education and wiki, I think that how-to resources for adults would be good project, like how to do ABCDEFGHIJKLMNOPQRSTUVWXYZ tasks for eberryday life/independent living.

What I have observed on wp is that a lot of people have a lot of knowledge on doing practical things, and it would be nice to collect that knowledge in one place.

if you are actually talking about doing some of the teaching on diffferent life skills on WP threads, that is a great idea. when I first found WP, I was both dissapointed and surprised that threads for various life skills did not exist. Truth to tell, I could still use a good one on how to tie my shoes, how to dress my aging autistic body, and anything on how to make the sproungy wiry stuff on my head resemble human hair. i would also like a dealing with PTSD thread, and the love and dating thread; I read some of the posts, So many of these young peoplehave no clue how to flirt, how to date,and that if they think they are in love on the first date, they're actually not, so boy howdy, don't let the girl know that you think you are. I think as we prioritize what threads are most important [yeah, I know, shoe tying is not a priority] those active in the project would need to post on the threads regularly to keep them at the top until more people became interested in turning it into a long-term thread.

At our mini-retreat in February, we plan to tape some of it, compile it into an interesting 3 or 4 minute video which we can distribute to the 100s' of autism organizations around the country. Our intention is to encourage autistic groups all over the world to put together their own mini retreat in their area for a very nominal cost per person. We also hope to attract others to our intentional community OR provide them with the impetis to start their own.

If you have a more specific plan of action before the retreat, possibly you could make a dvd explaining what you are doing and how people can help. We would be proud to share it and attempt to get attendees involved.

I think that we can start by making and sharing an eggsample of things in three categories:

1) autism information on verry merry berry specific topic that many people have questions about
2) education in school subjects on verry merry berry specific topic
3) life skills how to for teens/adults, a verry merry berry specific topic

The key is verry merry berry specific to start with. I tend to do bester than I plan, so it's best to just do it, then think about what to do after getting some feedback on the beta.

What idears do y'all have for which topics for 1, 2, 3?