<p>In an effort to expand my world (see large life/small life thread), I’ve been thinking of causes in which I’m interested and autism is one (Son has Asperger’s). However, I really don’t believe that vaccines cause autism, so I’m afraid I would not fit into the Autism Society or other autism advocacy group.</p>
<p>If you are an active member of the Autism Society or other support/advocy group, please share your experiences.</p>
<p>My parents were in the autism society when my autistic twin brother and I were young (early '90s). I don’t remember hearing my mom complain about lot of vaccine paranoia, but it was 15-20 years ago and things have changed. I do remember that there were fights about the validity or lack thereof of facilitated communication (which is no longer a popular issue).</p>
<p>My brother played with some of the kids of other people in the Autism Society - they were the closest thing that he had to a social group. Of course, by today’s standards of diagnosis, all those kids would be considered severely autistic, though back then they were considered very high-functioning. A kid with Asperger’s, or today’s standards of high-functioning autism, probably has more access to friends and might not get the same benefit.</p>
<p>Not all people with autistic kids have vaccine phobia.</p>
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<p>Of course - I know that. But my question is whether the support/advocy groups are dominated by the people who do have vaccine phobia, such that a person with differing views would not be welcome.</p>
<p>Missypie - Look into Autism Speaks founded by fromer GE CEO Bob Wright and his wife Suzanne. Their grandson has autism and they have doen fantastic things wonderful research outreach, etc. Unfortunately, they had a terrrible separation from their daughter because she striongly believes vaccines are the cause of her son’s disability. Bob and Suzanne feel that research does not support this and believe that only more research is the key. Daughter was the one who decided to split.</p>
<p>Thanks, Woody.</p>
<p>I have nothing personal against the people with strong beliefs about vaccines. But it would be like me, as a Democrat, joining a Republican group - why get into a situation where you know you will clash?</p>
<p>This was just on the cnn.com web site, from Autism Speaks. Yikes!</p>
<p>[‘I</a> Am Autism’ Advocacy Video Sparks Controversy - TIME](<a href=“http://www.time.com/time/health/article/0,8599,1935959,00.html?cnn=yes]'I”>http://www.time.com/time/health/article/0,8599,1935959,00.html?cnn=yes)</p>
<p>Autism Speaks.
Great organization.</p>
<p>missypie - did you see this column about autism diagnosis in today’s NYTimes? <a href=“http://www.nytimes.com/2009/11/10/opinion/10baron-cohen.html?_r=1&scp=1&sq=baron%20cohen&st=cse[/url]”>http://www.nytimes.com/2009/11/10/opinion/10baron-cohen.html?_r=1&scp=1&sq=baron%20cohen&st=cse</a></p>
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</p>
<p>(if the author’s name sounds familiar, I believe he is the cousin of Sacha Baron-Cohen)</p>
<p>I belonged to the Autism Society of America for years. They are the premier Autism organization, well respected in the autism community. They include board members who are on the autism spectrum. Be cautious about Autism Speaks. They are not so inclusive of adults with autism, and don’t devote as much attention to the substantial number of adults with autism who are functioning in society.</p>
<p>The ASA gave my child the opportunity to attend Asperger camps and opened doors for me to attend several dozen autism and Asperger workshops.</p>
<p>You can PM me if you’d like more details and references.</p>
<p>missypie, I think the video very good; no yikes from this mom of a kid on the spectrum!</p>
<p>The article talked about Autism Speaks not funding services; well, someone has to fund research! And I’m glad Autism Speaks does. </p>
<p>I don’t belong to any autism organization; I have donated to both Autism Speaks and ASA.</p>
<p>In the TIME article missypie linked, there was this:</p>
<p>[For</a> the First Time, a Census of Autistic Adults - TIME](<a href=“http://www.time.com/time/health/article/0,8599,1927415,00.html?iid=sphere-inline-sidebar]For”>http://www.time.com/time/health/article/0,8599,1927415,00.html?iid=sphere-inline-sidebar)</p>
<p>A census in England found that autism was just as common in adults as in children, about 1 in 100. Amazing.</p>
<p>There is total disagreement about how the organization, Autism Speaks, can help patients, parents, and the autism community. It’s true the organization split between the founders and their daughter over the direction of the organization. Here’s what their mission states:</p>
<p>“We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.”</p>
<p>You’d have to dig deep to find the word “vaccine” anywhere, but the founders believe whole-heartedly in uncovering Why. Autism Speaks is not so “great” for families of those affected, and here’s why:<br>
<p>For anything that is not extreme and obvious it is very difficult to get support or even accurate diagnosis.
However- I am unsure if the new definition is going to hurt or help.
As an adult who has 9/10ths of the indications of dyspraxia, I have been told by MD.s that I couldn’t have anything on the neurological spectrum that is atypical because I was not diagnosed as a child ( in the 1960s)</p>
<p>( most info is through U.K.)</p>
<p>[dyspraxiausa.org</a> - Home](<a href=“http://www.dyspraxiausa.org/]dyspraxiausa.org”>http://www.dyspraxiausa.org/)</p>
<p>In the Autism Society (formerly “of America”), much of the day-to-day stuff is done on the local level. It has very much been a grass roots, bottom-up organization. However, recent structural changes make it likely that the national organization will play a larger role in what happens at the state/local level in the future (for better or worse).</p>
<p>As far as the vaccine issue, since the vast majority of your involvement would be with local advocates, your experience would be dependent on their attitudes. Officially, they need to follow the Options Policy, as shown here:</p>
<p>[Autism</a> Society: Options Policy](<a href=“http://www.autism-society.org/site/PageServer?pagename=asa_princip_options]Autism”>http://www.autism-society.org/site/PageServer?pagename=asa_princip_options)</p>
<p>My experience is that there is considerable disagreement about what the Options Policy means. Does it mean we should take a position regarding treatments which have more of a scientific basis (i.e., peer-reviewed scientific studies) both pro and con, or do we throw things out to our members and the general public without taking a position and let them decide? Without sharing all the details, some of our members have left the organization over the years because our position was either not focused enough (more common) or not inclusive enough. This is partly why there are so many autism organizations out there - strong opinions on what are the most important issues and how to address them. The Autism Society is very much a generalist in that regard and is typically a “big tent” organization.</p>
<p>In general, though, most of the local chapters focus on ways to improve the lives of people on the spectrum and their families. Autism Speaks has focused much more on research, at least in the past, but is broadening their mission.</p>
<p>My experience on the vaccine issue is that the national Autism Society wants further study on the issue, but locally, most of us are skeptical about any link. Probably the best way for you to find out about your “fit” (egad - CC talk leaking into real life) is to meet with local leaders at some event and see if you’d like to either be a part of what they do or influence the direction they’re taking. I can guarantee they’ll be more than happy to have you volunteer for them!</p>
<p>BTW, I hope your son had a better first semester in college than mine. Time management and self-discipline were challenges, to say the least (what a shock).</p>