The Interagency Autism Coordinating Committee (IACC) is meeting tomorrow. On the agenda is “Welcome and Introductions of IACC Members”.
It is no secret that many groups have wanted a seat at the IACC table. Autism Speaks was previously represented by Alison Singer, but she left Autism Speaks to form her own organization, the Autism Science Foundation. The vaccine-causation groups have been very interested in increasing their presence on the IACC. Currently, they are represented by Lyn Redwood of SafeMinds. But, Generation Rescue and the National Autism Association and, I assume, TACA would like to have membership on the Committee.
In a recent blog piece discussing the IACC, Katie Wright, board member for the National Autism Association and Generation Rescue, pointed out the broad membership base of the NAA and TACA. Further, she stresses the importance of a “significant public constituency”
The National Autism Association, representing 12,000 dues paying parents and TACA representing 17,000 parents implored Dr. Collins to assign these organizations seats on IACC. Of the 19 members on the committee, only 3, Lyn Redwood, Lee Grossman and Stephen Shore represent a significant public constituency.
To me, the message seemed clear. The NAA or TACA should be on the IACC because they are so big. They represent such a large base of support.
I’ve been reading about how these groups represent “thousands” or “tens of thousands” of families for some time. The statements are always unsupported, so I tend to give them little weight. But when I read the above statemen, I spotted the phrase “dues paying”. To me, that reads as “a fact I can check”.
So I pulled the 990 forms for the NAA. 990 forms are the tax forms that charitable organizations file in the US, and they are made public, albeit after a couple of years.
The 2008 form 990 shows under “membership dues” that the NAA took in $17,640.
Membership dues to the NAA is $35/year for an individual, $60 for a family. This was the same in 2008.
Taking the $35 value, that gives a membership for the NAA of 504 (an upper bound estimate). Very respectable. Not 12,000, though. Perhaps they’ve had a major membership boom since 2008. Perhaps I misunderstood something. But, this fact check would suggest that the 12,000 claim for the NAA’s membership is, perhaps, somewhat high.
Maybe 2008 was a bad year for the NAA? Checking the other Form 990’s for the NAA gives the following amounts for dues collected:
2006: $14,950
2007: $22,592
2008: $17,640
Hmmm. Looks like they may have peaked in 2007.
Perhaps there are a number of dues paying members in the NAA chapter. Guidestar shows a number of these NAA chapters. The few I checked (like the Northeast Ohio chapter) report no dues.
I’m open to being corrected, with proof. But, for now, it looks to this observer that the National Autism Association membership is much less than the 12,000 claimed.
Whether the size is important, that is a discussion for another post.
For the record–
Ms. Wright is invited to research her facts further. Her statement:
“Lyn Redwood then suggested a town hall on environmental factors in autism research because environmental research is the biggest gap in the strategic plan.”
Is not consistent with the facts. The IACC has a number of projects on environmental causation and gene-environmental factors, with a substantial budget.
I’ve blogged it a few time, but here is the link to the IACC’s website:
http://iacc.hhs.gov/strategic-plan/2010/budget_estimate/q3_estimate.shtml
Maybe the dues she was talking about is the price a family has to pay to deal with Autism.
They are probably referring to their ‘free memebership’ which is essentially their email list.
“Free Membership – includes our online newsletter NAA News and Views. Simply sign up for our free membership by entering your email address below. All contact information remains confidential and for NAA use only.”
Apparently, entering your address and filling out your personal information constitutes ‘paying your dues’ and also means that you agree with all thier projects as well. The math is also 12K + 17K = 39K, nobody could POSSIBLY belong to both orgs, could they?
livsparents,
She made a point of claiming “dues paying”.
TannersDad Tim Welsh,
thanks for taking the time to comment.
http://autismdiva.blogspot.com/2007/07/national-autism-association.html
Google Street View: http://tinyurl.com/26fmmef
jypsy,
When you are scooped by the Diva, you can’t complain. She is amazing.
jypsy,
just to be clear–I meant when I’m scooped by the Diva. Should have said “when one is scooped by the Diva”
Ah well.
livsparents,
That’s 12+17=29. Though, it’s a much smaller error than 12K as opposed to 500… And these people want to “help” with handling finances and/or data analysis?