AUTISM SPEAKS' TAIWAN PROBLEM
By J.B. Handley
As a child living in Tokyo, I remember my fascination in seeing a copy of a black market World Book Encyclopedia my Dad bought in Beijing, with the pages where Taiwan should have been left completely blank. Just white paper in the middle of the book, as if the country did not even exist.
Go to the website of Autism Speaks, and you encounter a similar phenomenon.
It is as if the world of DAN!, SafeMinds, Generation Rescue, TACA, and recovered children never happened. “Mercury and Autism” receives a single mention, shrouded in pseudo-science babble and qualified statements. Helpful for a parent with questions? Not in the least.
The parallels between Autism Speaks and China don’t stop there. A quick review of their now-public Form 990 reveals that of the $13.98 million in fellowship awards given in 2006, a full $2.3 million was allocated to a single project at the Kennedy Krieger Institute, a nonprofit organization run by the Chair of Autism Speaks’ Scientific Advisory Committee, Gary Goldstein. This represents an incomprehensible conflict of interest, dwarfs all other awards made in 2006 by a factor of 10-20x, and would never be permitted in an ethically-minded public company. (It is also worth noting that Dr. Goldstein’s compensation from Kennedy Krieger in 2006 was $873,400 – a princely sum for a non-profit CEO.) As in China, cronyism appears to be alive and well at Autism Speaks.
Autism Speaks is also more than happy to rip-off one of the most widely used words in our community – “biomedical” – and use it for their own propaganda purposes, like in this sentence from their 2006 annual report:
"Autism Speaks is committed to aggressively funding biomedical research that will uncover the causes of autism."
At first blush, you’d think Autism Speaks was finally recognizing Taiwan, when in fact they are using OUR word to mean ALL funded research, including genetic research (which is where almost all their money went in 2006).
As perhaps one saving grace, Autism Speaks does still have some democracy in their ranks. It’s their walks. In 2006, walks represented almost 50% of their total revenue. Clearly, there are parents organizing and participating in the walks of Autism Speaks who still believe in what Autism Speaks stands for. I don’t know these parents, I’ve never met anyone who walked for Autism Speaks, so I will pose a simple question: Do you know what you are walking for?
So, here I sit, a proud citizen of our Taiwan, a world where the truth about the risks of vaccines is well-known, and stories of recovered children abound. We’ve been joined in this great country by Autism’s highest profile leading-ladies: Jenny McCarthy, Deirdre Imus, and Katie Wright. Our Taiwan is thriving, our ranks growing, our mission clear, our future certain, and, most importantly, our children recovering.
J.B. Handley is the co-founder of Generation Rescue. Mr. Handley and the other officers of Generation Rescue are volunteers and have never received any income from autism and never will.
Hi my name is Debbie and I have a grandchild with autism. My daughter co chaired the autism speaks walk in NNJ for 2 years as a volunteer and will never make that mistake again. You would be shocked at what she found out! Take a look at their salaries Big mistake many of our members dropped out of Autism Speaks also. You are so right all salaries and that community grant is not a commuinty grant like they claim it is see the list of recipients!!!! I started my own special needs year round recreation group, support group, we do group trips, we get a movie theater to ourselves each month and around 70 of us go see a new release movie with popcorn and soda with the place all to ourselves, Breakfast with the Easter Bunny, Christmas with Santa and more. We have our own Social Skills Groups and have had therapist do different group therapies in a donated facility so the over head was cut out and families that couldn't afford vital therapies have been able to provide them to their children. We have been around for 4 years and have a cheer dance squad that has been to 3 compititions and now will be cheering in front of the NJ Assembly at the end of this year. We have an art show that hangs in a gallery all the art pieces were created by children with autism. The list goes on. We are a mom and grandma of a child with autism. We have applied for that community grant and we are well qualified to receive it. None of us take salaries NONE OF US. The grant has been given to Drs. University's and so on no community groups and certainly not us we service over 100 children the places that received the grants have no where near the number of families we serve. They are not doing this for the right reasons and they are doing the right thing at all!!!!
Posted by: Deborah Wertalik | August 23, 2008 at 11:55 PM
Side note: Kennedy Krieger flubbed my child's diagnosis when she was 3. We lost valuable time thanks to their inability to recognize ASD in my daughter, and their dismissal of mom's concerns.
Posted by: Michelle O'Neil | December 11, 2007 at 06:13 PM
I HAVE SAID IT MANY TIMES BEFORE AND I WILL CONTINUE TO SAY THAT 'AUTISM SPEAKS' DOES A LOT OF SPEAKING BUT FAILS TO LISTEN. JB, please do not even give AS the time of day. All of that money for 2006 (and we are talking about millions here) could have used for something else such as one free month of ABA or other well known therapies for many families in need. I personally know one child that became potty trained at the age of 5 within the first 3 days of attending ABA!! All that money that was wasted on trying to find the one gene that is thought to cause Autism. Autism Speaks is the wizard of oz of all other groups that perform charity walks down the yellow brick road and then donate money to god knows who. They should have just as well flushed those millions down the toilet. I have had enough! I am going to start my own group and find a way to help those in need and hopefully I too will not flush millions of dollars down the toilet. Wish me LUCK because god know I need it!
Posted by: Elucidatus | December 10, 2007 at 06:37 PM
J.B.
Things may be changing at AS.
I was in Atlanta and heard Katie speak. Her parents were in the audience. With regard to the focus or platform for AS moving forward, she said something to the effect of, "The old gaurd has had their turn and they have produced very very little. I think you'll see some new faces and some new direction, soon."
I am very new to all this, but I'm patiently optimistic that with Katie's input (now that her parents see that bio-med does work) they will start focusing their efforts (funding) where it will do the most good. Very few Autism organizations that I have come across (other than TACA-NOW) appear to have come through their early years unscathed (your GR included - although Kevin B. cleared up a few things for me in Atlanta).
For Autism Speaks, it is what they do from here that will ultimitely prove their worth in my eyes.
Posted by: Todd Dea | December 09, 2007 at 01:10 PM
The pharmaceutical industry has many front groups and I'm grateful to these environmental injury forums, not to mention beautifully written articles like this, for alerting us to the evidence that Autism Speaks is creeping closer and closer to the status of psychopharmceutical front groups like CHADD and NAMI.
Don't hate me, but I do have to disagree that the term "biomedical" is ours per se: http://findarticles.com/p/articles/mi_qa4427/is_200509/ai_n15704473
I think this is a point worth clarifying because there are many psychiatric reform groups and sites around which are deeply critical of pharma (and which, unfortunately, are not supported by the same power and financial base as drug company front groups), such as psychrights.org, icspp.org, psychtruth.org, in which the proponents of non-psychopharmaceutical interventions for disorders refer negatively to "biomedical interventions"- but they don't mean altmed parents. It's not "our biomedical" that they're referring to, but the APA's historical use of the term "biomedical" and the psychopharmaceutical industry's "biomedical". The reformists were using this term almost as long as the drug industry has in order to criticize pharma practices, which makes our use of it a bit new wave.
That doesn't mean that no psychiatrist in history has ever referred to, say, vitamin treatment for schizophrenia as "biomedical", but this kind of reference would be very rare these days in the majority of pharma-driven research. When they say biomedical treatments of children, the APA, pharma-funded academia and pharma itself mean hard-core psychiatric drugs, psychosurgery and electro-convulsive therapy. And many people fear that this is what Autism Speaks means as well.
Having attended the ICSPP conference and Congressional briefing in October, I can attest that many prominent members of the coalition are squarely on our side and many others are coming along, so I think it would be a shame if those from our side were to misinterpret certain psych reformists' intentions in attacking biomedical interventions. In fact, it was Dr. Karen Effrem, who sits on the boards of directors of Alliance for Human Research Protection (from which the safer-vaccine movement has been getting some love lately) as well as the ICSPP (International Center for the Study of Psychiatry and Psychology, founded by Peter Breggin, one of pharma's long time critics), who initially told my husband and I to read Kirby's "Evidence of Harm", first warned us about thimerosal in our children's flu shots and first directed us to resources for "our biomedical".
Clearly Dr. Effrem knows the difference between "our" biomedical and "their" biomedical, but the almost completely contradictory use of the term in these different realms has caused some confusion. Maybe we can eventually coopt the term completely, but I think that the day the rest of the world wakes up to the dangers of certain pharmaceutical products and practices isn't going to come over night.
Posted by: Gatogorra | December 07, 2007 at 07:29 PM
I truly believe that many of the thousands of people who participate in the Autism Speaks walks have no clue what AS actually does with the money raised. How about them fancy offices in New Yawk City? Private planes to scoot around the country/world? One tidbit I learned recently is that Mr. Wright's other gig, GE, manufactures machinery on which vaccines are made. No, he's not going to look into vaccines. The list goes on and on, but its the biggest game out there and people want to be in with the "in" crowd, whether its cool or not. Ignorance may be bliss in some places, but here its just plain unfortunate.
Posted by: Diane | December 07, 2007 at 08:58 AM
Did you order your "Nobody Speaks for Me" T-shirt yet? I'd like to see a lot of those at the next walk - standing on the sidelines....
Check it out over in the ad column.
Secret Santa
Posted by: Wear your heart on your sleeve | December 07, 2007 at 08:32 AM
I whole heartedly agree, autism speaks does note represent the majority of parents within the autism community. They like CAN and NAAR before them have done everything possible to minimize the vaccine connection. Initially my thinking was Bob Wright being the CEO of NBC was in a catch 22 position. When he left (was forced out??) NBC I thought; "Ok now they can pull out all the stops and begin aggressive investigation into vaccines."
And I waited and waited and waited some more, to no avail. I think the thing that irritates me the most is obviously they (Bob and Susan Wright) believed in the vaccine connection at one time. I clearly remember Susan briefly discussing this in one of their early interview. They also paid for their grandson's bio-medical therapies. So what happened? Did they start taking funding from the drug cartels. Did they start getting flack from the government? I just don't understand how or why their attitudes changed.
As for me and their walks, never ever will I sweat for them when the money is going into ONLY genetic research and not into the environmental triggers that are certainly playing a role in this generation of mercury toxic children.
Deborah A Delp
Posted by: Deborah | December 07, 2007 at 08:09 AM