Autism Speaks, but Not with One Voice

The Autism Speaks organization has merged several advocacy organizations under its umbrella to become a dominant fundraiser in a crowded field.  But controversial theories about the cause of the condition present a challenge to the founders even from their own daughter. 

The New York Times (Jane Gross and Stephanie Strom) reported on the public rift between the founders of Autism Speaks (EIN 20-2329938 Form 990) and their daughter on the proper direction for research into the condition. 

The founders are Robert "Bob" Wright, vice chair of GE and former head of NBC, and his wife Suzanne.  They are pursuing a process of creating a big tent fundraising organization to support autism research, merging with other organizations like the National Alliance for Autism Research (EIN 04-3246763 Form 990), Cure Autism Now (EIN 95-4542637 Form 990) and the Autism Coalition for Research & Education (EIN 13-3869783 Form 990).  From the 2005 Form 990s, the combined organization would have income of about $36 million a year.  That far surpasses the results of the long-standing organization, the Autism Society of America (EIN 52-1020149 Form 990), which raises about $7 million, directly and through its network of local chapters (group return EIN 58-2248889 Form 990) and its foundation (EIN 52-2007155 Form 990). 

But the world of autism advocacy is sharply divided into two camps: those who believe that the condition is genetic and who favor intensive therapy and those who believe it has an environmental cause, specifically thiomersal (also known as thimerosal or Merthiolate), a compound containing mercury that was used as a preservative in vaccines.  Because autism often manifests itself in children at about the time as they receive vaccinations, there is a temporal association between the two, but scientific studies have not established a causal connection. 

There has been a large increase in the number of reported cases of autism, which may be due to an actual increase in the incidence or due to changes in reporting and awareness.  There has been an even greater increase in the number of autism groups.  I looked at the IRS master file from April and found 207 organizations filing returns in 2005 or 2006 that had the words autism or autisitic in their names.  Of these, 131 had a ruling date since 1998.  From 2002 alone there were 24 organizations. 

The Wrights are using their show business fundraising connections to establish some leadership in the field or to bully other organizations into submission, depending on your point of view.  But other groups organized around specific medical conditions tend to have local chapters as a basis for fundraising, support, and advocacy.  It will take a great deal of diplomacy to build that kind of structure in today's environment, where it is so easy to start a new grassroots groups and gain traction through Internet word of mouth among those most involved with the cause. 

Comments

[Michael]

Anyone wanting a succinct and hilarious opinion of Autism Speaks ought to listen to a 13 year old boy's comments at the end of Midnight In Chicago's latest free audio podcast at www.mic.mypodcast.com

The podcast is entitled

"Special Feature Interview with Douglas Giesel and An Update Interview with Lewis Schofield"

and is part of their Autism Spectrum Podcast series.

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Go here to sign a petition against Autism Speaks before it is too late...

http://www.autism-hub.co.uk/autism-speaks-dont-speak-for-me/index.php

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Autism Speaks is a great organization that has done a lot for the community, especially awareness. Thirty years ago, that unique uncle that did not socialize so much may now have been considered autistic, based on the increased awareness.

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The Wright family is doing an incredible job increasing awareness of autism in the community. I tried contacting them with my non-profit, and they were unfortunately not able to help me.

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