I am planning on starting an autism nonprofit organization that focuses on autism acceptance, support, lists of services, and possible therapy (physical, speech, occupational, etc, just as long as it is not promoted by CAN and/or DAN) and educational grants. The tenative name that I got picked out is The Autistic Network Foundation and I planning on incorparate it in the state of Illinois. I do need ideas on the mission statement and goals. I am currently in the planning stages in it.
Cool! I've been planning to start something similar in a few years (still in high school...).
Hm. Regarding mission statement, probably you want to mention something like "putting autistic individuals and their families in touch with needed services and supports". One goal could be to be receptive to input from autistic individuals (and families, but especially autistics). You could have a place on the website for feedback and comments and suggestions.
It makes me shudder when I think about those 20-some million dollars Autism Speaks gets annually, and then dumps most of it to research that doesn't help us and towards an end that a very significant portion of us oppose. Anybody who succeeds in diverting funding from them and putting it to good use has my support, full stop.
I will be really happy when Autism Speaks is no longer in business. At least Autism Society of America does not promote a cure, but rather education and support.
I'm also working on something similar here in Iowa. The web site is being constructed right now at
http://aspiecentral.org
There is very little happening in the Des Moines, Iowa, area. Actually, we're a bit behind in most of the Midwest.
Thanks, tlcoopi7, for your initiative.
The Meidwst is behind in autism support, especially in the rural areas and I hope that The Autistic Network Foundation will help parents, professionals, and autistics to get the help that they need to have fulfill lives.
I would strongly advise that you have a few autistics serving on your board and evaluate all therapies with a strict approach:
1 - What is this therapy aimed at? Autism itself or a comorbid of some sort?
2 - Is it scientifically proven and priced reasonably?
3 - Is it ethical? Does it require the patient to be forced into anything? Does it have side effects?
Keep us informed
I am planning on having a few autistics serving on both the board and staff. I bet that many people will be surprised that an autistic founded and running an autism charity. I will keep everyone informed about it.
You would have to do more than a website and bulletin board listing supports and services. You would have to have a clear plan on how you would evaluate autism services and how often. How would you collect the opinions of people with autism using these services? I encourage you.
When I evaluate the services, I am going to contact the professionals and asked them how many autistics do they serve. I will then contact either the autistics themselves or their parents and asked them if it is helping them in anyway. There are some services that I used myself and I can use my experiences to help evaluate them. I will evaluate new services monthly and the approved ones on an annual basis.
Not sure how I can contribute suggestions but I wholeheartedly endorse your idea. We will not be recognized as free humans until we advocate for ourselves.
The Meidwst is behind in autism support, especially in the rural areas and I hope that The Autistic Network Foundation will help parents, professionals, and autistics to get the help that they need to have fulfill lives.
UVM sponcered the Vermont Rural Autism Initiative that supported schools & parents in understanding autism and helping to plan education. VT is big on unsing MAPS, etc to help the teams see each child individually and holistically.
For adults, finding the right job sites (acceptance of ND) in which they can then work from strengths and finding knowledgeable shinks & doctors seem to be deffinate needs
Yeah, networking is so vital!!
Many programs focus on autistic kids, not autistic adults, and I want this one to focus on autistics of all ages.
Yeah. It would be good if you put out advertising campaigns for things like encouraging acceptance and employment opportunities. Perhaps you could get in touch with some of the autistic advocates (on this site and/or elsewhere) who know how to use cameras and edit and who own the video cameras. I'm sure you could find people willing to do this promotional sort of stuff for cheap or even for free (that way, you can also boast that the maximum amount of money of the organization goes to helping autistics rather than self-promotion or lawyers).
I do have my own digital camera that takes both still photos and video with professional settings for still photos. I am contacting various autisitic avocates through here and other sites for ideas and possible help.