I know that’s the burning question on our minds. “There are so many autism based organizations out there. Who deserves my support?” I’m going to approach this from a parents perspective, but I will mention a couple groups for adults on the spectrum as well. I’m going to give a description of each group and, at the end, give you my opinion of said group. I don’t want you to confuse the facts with my opinions, and I certainly don’t want to be charged with libel.

First up: the 800 pound gorilla in the autism fundraising world.

Autism Speaks has been around since 2005. Much of their funding goes to scientific and research grants, but they also have a strong advocacy arm. They have been instrumental in getting the Combating Autism Act passed as well as pushing the states to mandate autism insurance coverage. Their 2009 annual report shows their income and outgo, and is public information as they are a nonprofit. They do have some local clubs, but at the moment they primarily operate in the political and medical arenas. They also hold fundraising events all over the country. According to Charity Navigator, annual income for Autism Speaks was $45 million in 2009. Their administrative expenses were only 5%, but their fundraising expenses were 24%.

Next up: The original organization dedicated to autism research.

Autism Research Institute was founded in 1967 by Dr. Bernard Rimland and has sought treatment for autism since its inception. ARI originated the Defeat Autism Now! (DAN!) project to create a place where clinicians could share their work and safely discuss causes and treatment options. ARI is primarily a research body, although they hold 2 annual conventions to share their research with parents and adults on the spectrum. ARI’s annual budget was about $1.9 million, and according to Charity Navigator they only spent 10% of that on administrative expenses. Fundraising expenses were 4.7%.

Third: the Autism Society of America

The Autism Society of America was founded in 1965, also by Dr. Bernard Rimland, and is a grassroots organization dedicated to political advocacy. It has a club model, and has over 100 chapters across the US dedicated to local and community based supports. They also do local fundraising through a variety of projects, and the national organization spends a great deal of time in DC lobbying for autism assistance on the federal level. Per Charity Navigator, their total revenue was $4 million, of which 10% went to administration and 12% went to fundraising.

Fourth: Generation Rescue

Formed by parents and championed by Jenny McCarthy, Generation Rescue is a very popular and powerful group. They support recovery and believe in a cure for autism. They have an annual convention and have a network of Rescue Angels, people that newly diagnosed families can call for help and support in their area. Their website is a great resource for newly diagnosed families. I can’t find their charity info on their site or Charity Navigator so I don’t have any financial information on them. They are listed on the IRS site that verifies nonprofits, so they are a legitimate nonprofit organization.

Fifth: TACANow, short for Talk About Curing Autism Now.

TACANow is another club model group with local chapters for community support. TACANow started as a support group and grew into a national organization with chapters all over the country. They do a great deal of fundraising but they also give a lot back on the local and national level. Again, they are not listed with Charity Navigator so I don’t have any financials on them. However, they are on the IRS site so they are a legitimate charitable organization.

Finally there is the National Autism Association.

The National Autism Association’s mission statement is “to respond to the most urgent needs of the autism community, providing real help and hope so that all affected can reach their full potential.” I must admit, when I was searching for an autism organization to support they were not on my radar, although they have been around for several years. Since I don’t know much about them, I’m just going to let folks check out their website and make their own decision. Their financials are on their website as well.

There are others, of course. Autism is like any other cause and there are dozens of organizations doing good work that need support. These are the ones, however, that are most likely to show up when you start looking to get involved in the advocacy world. I want to explain which organization I have chosen to support and why I gave the other organizations a pass.

First off, Autism Speaks operates at a high level. They advocate professionally and have a lot of staff. They also get a ton of money from corporate donations. In the early days, for us, they were the most visible and we considered supporting them. However, I felt that their habit of supporting genetic research that did nothing for people on the spectrum right now. Also, they didn’t have any real parent support, barring a couple downloadable items, and I couldn’t really get behind them for that reason as well.

Second, ARI is a research organization that I couldn’t “join” if I wanted to. I’m not a doctor or a scientist. While I do support what they do, I wish they would make their verbage a little friendlier. When you say you’re going to “defeat autism” it sounds like you may actually attack my son, which is not cool with me at all.

Third is the Autism Society of America. They were the first organization we donated to back when Raymond was first diagnosed. I now serve as secretary for their Northern Virginia chapter. I like the grassroots aspect, and they are the only organization I have listed that seems to really grasp the lifespan issues of folks on the spectrum. ASA helps train folks to be advocates, and their online resources are excellent. Plus, the fact that the organization has so much history and experience is helpful when trying to get things done.

Generation Rescue is a wonderful organization, and my wife is a Rescue Angel for our area. I like what they do, and their site was a great help when we entered the world of autism. There’s just one problem with “joining” them. They’re in California! The 3,000 mile difference being a barrier, we elected to support them spiritually by becoming a rescue resource.

TACANow is another organization we considered supporting, and actually talked to some other parents about opening a chapter here in Fredericksburg. At the time we couldn’t get the parent support we needed, so we opted not to go that route. In hindsight I’m glad we didn’t. As my perspective has grown, I think I would have difficulty supporting an organization with the words “cure autism” in their name. TACA is a well intentioned group full of hardworking and caring people, but ideologically we are on different pages.

I just found out about the NAA a few months back, but after browsing some of their web resources I see the same “recovery” and “cure” language that I dislike, so I wouldn’t really think about joining them either.

Two other groups that I support are the Autistic Self Advocacy Network (ASAN) and Self Advocates Becoming Empowered (SABE). ASAN is focused specifically on the rights of autistic people and is run by adults on the spectrum. SABE seeks to empower all advocates with a developmental disability, the most visible and known of which is autism.

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