Autism Speaks and Avonte. Open Barn Door. Smack Cow on Ass. Buy Door Alarms.
This week Liz Feld of Autism Speaks appeared on Katie Couric to talk about Avonte Oquendo's wandering, disappearance and death. This precious boy, a mother's son, died in The East River. I don't know if Avonte could swim or not. But if you fall into a large body of water in the chill of a New York October (he eloped from school due to lack of proper supervision on Friday, October 4) swimming is kind of the least of your worries. Michael Phelps probably would not have survived the fall, the splash, the panic and then trying to find a safe place to get OUT of the river. Note - this was not the pool at the Harvard Club, it was the dark, murky East River.
Autism Speaks is backing swimming lessons for our children. Really? After months of Avonte's disappearance - some folks affiliated with AS put together a terrific reward for his return - and that was great - but swimming lessons? THAT'S their response?
Our Contributing Editor Tim Welsh Tweeted:
TannersDad Tim @TannersDad
40+ children die from wandering in the last couple of years and no sense of urgency to deal with Autism. Swimming lessons? really no really?
TannersDad Tim @TannersDad
@LizFeld_AS @katiecouric Swimming Lessons?
And our Contributing Editor Adriana Gamondes created the Marie Antoinette graphic meme to show the disconnect of the effort.
I've often said Autism Speaks' role for the community - the flesh and blood people dealing with the challenges of autism - is akin to watching our kids get killed crossing a highway and instead of building fences to protect them, Autism Speaks raises funds on the backs of the very same families to purchase Mercedes Benz ambulances to whisk the kids off to their own hospitals. The cow has left the barn, so to speak.
I agree the video by the NAA is brilliant, I will share it in my facebook too. Thanks for sharing
Posted by: Mabel | February 15, 2014 at 01:34 AM
I did not know that Bernie Marcus was tainted by the CDC.
SO not likely the coffers of federal and state money that have been opened will come to any good use.
Posted by: Benedetta | February 14, 2014 at 06:37 PM
Comment I posted back in November:
To put this in context Autism Speaks was founded when CDC Foundation Board Member Emeritus, Bernie Marcus, approached Bob and Suzanne Wright to found the charity endowing it with $5m of his own money every year for the first five years.
Bob and Suzanne both spoke up about their concerns regarding vaccination in a visit to the UK in October 2008 but little has been heard from them on the subject since, though we note that board member Alison Singer was sacked when she acted out of turn at the IACC to veto exploration of the vaccine issue in a dirty procedural manouevre in 2009.
Unfortunately, Autism Speaks has been paddling fast in the wrong direction ever since its inception crystalising perhaps in the appointment of former Wyeth and Pfizer executive Robert Ring as science director earlier this year. Paradoxically, Autism Speaks cannot work out whether autism is a good thing or a bad thing, locked as it is in with a pharmaceutical consortium trying to develop products with an expanding market as an attraction. The glee with which they announced the discovery of a rate of 1 in 38 in the Korean city of Goyang in 2011 was unmistakeable, although it turned out that 75% of the screened for positive subjects had been removed by their families from the project before it could be completed.
I think perhaps Bob and Suzanne Wright have presided over this with a sense of solemn corporate duty, while the "scientists" and their industrial sponsors decide the policy. We always hope for a change of heart but Autism Speaks has done so much to confuse the picture.
Posted by: John Stone | February 14, 2014 at 04:19 PM
There's still no answer about how Avonte came to be wearing a stranger's underwear. How would swim lessons have helped him there? Our kids are dying in droves-- from wandering, institutional abuse, lethal drugging, elevated rates of deadly seizures, etc.-- and there's this vast commercial machinery profiting from the disaster and blocking actually effective recovery.
So it's bleakly hilarious that nothing brings the Skeptic biotech front squad out of the woodwork faster than publishing some off-hand infographic, aka "meme." As a commercial enterprise, I guess it's not surprising that the fronts fretfully guard it as their sole turf, probably because of Dawkins' garbage theory that "memes" can virally infect DNA and "alter thought patterns for generations" or some nonsense. And the results, oy... https://www.facebook.com/RtAVM/photos/pb.414643305272351.-2207520000.1392410303./648046935265319/?type=3&theater
The front hubs have a disadvantage playing at "gallows humor" and "rebellion" when they're basically the hangmen for corporate and state interests. Wonk-wonk, too bad. At the end of the day, it's just an image, right? Where's the outrage at restraint, seclusion, over-drugging, denial of organ transplant? ... Crickets.
Posted by: oy vey is meme | February 14, 2014 at 03:55 PM
Check out Autism Speak's 2011 tax form 990--if you have the stomach for it. Their employee/director/officer salaries are on page 13 of the PDF here: http://www.autismspeaks.org/sites/default/files/documents/2011_tax_form_990.pdf
Posted by: Jennifer Hutchinson | February 14, 2014 at 03:22 PM
Thanks Stag Mom and John Stone Thanks for pointing out that Autism Speaks is just backing swimming lessons.
Do you think Autism Speaks could be squeezed a bit like helping pay for swimmming lessons or even dish out some money to help build pools in communities that do not have pools.
Could Autism Speaks be forced to put out?
Posted by: Benedetta | February 14, 2014 at 02:20 PM
Swim lessons? Give me a frigging break! This is more of the autism lite version that has become so popular. This needs to stop now. It's not all The Big Bang Theory. We should complain on the Katie Couric site and to AS.
Posted by: Jen | February 14, 2014 at 02:09 PM
I was corresponding recently with a Facebook acquaintance close to the situation, regarding Autism Speaks' refusal to step up to the plate when asked by Avonte's supporters/searchers -- apparently it was all that AS could spare to offer to print up a few hundred flyers. Hopefully this person will speak up and blow the lid off this sham of a front organization.
Posted by: BJ | February 14, 2014 at 01:40 PM
My jaw dropped when Liz Feld said that Avonte drowned. They still don't know how he died. Like his mom said---he was frightened of the water. Swim lessons? Please.
Posted by: Susan Leusner | February 14, 2014 at 12:59 PM
Me thinks Mikejaws is WELL aware of Autism Speaks' lavish salaries and more.....
Posted by: Maryjaws | February 14, 2014 at 12:32 PM
mikejaws, It's understandable hearing your your frustration (and anger, I think).
As to Autism Speaks' history, perhaps you are not aware of their lavish salaries for their executives and staff, their Annual Dinner at some fancy hotel, AND, guiding all their $millions AWAY from any studies of vaccine damage.
As far as I can discern Autism Speaks is a sham, in bed with Pharma and the dishonest criminal leaders at the CDC and NIH et al. who REFUSE to rethink or reassess the obvious toxicities clearly evident in ALL the vaccines they champion.
Posted by: david m burd | February 14, 2014 at 12:29 PM
I agree with Liz Feld on developing a national strategy to address the issue of autism wandering. yes, we need a national strategy that includes mandatory training for first responders, public awareness campaigns as well as affordable, easy to use tracking devices for our kids.
Posted by: SarahW | February 14, 2014 at 11:40 AM
I think you have to consider how irrelevant being able to swim in controlled conditions is to a story like Avonte's. The trouble is that Autism Speaks is offering sticking plasters for gaping wounds. It might sound good if you don't know anything about it.
Of course, someone with high functioning autism could learn to become an ocean swimmer, but it really is not the figh-functioning cases that are at risk.
PS It is about time that Autism Speaks began to address why people are seriously fed up with them.
Posted by: John Stone | February 14, 2014 at 11:33 AM
Amazing how we quietly live out drama everyday with our kids while the rest of the world passes by oblivious to our struggle.. sort of like a child drowning, silently slipping under the water when noone is looking. By the time public realizes what's happening, it's too late.
I think by far, the best Autism Wandering awareness piece, which I've shared on FB, is this one by NAA.
Posted by: SarahW | February 14, 2014 at 11:05 AM
This is one of the most misleading posts I've ever read. If you watch the piece, which you can on the Autism Speaks site and on Katie Couric's site, you'll see that funding for water safety courses is just one of the programs her organization is promoting.
The image on this post is incredibly insensitive- a flippant reference to drowning children has no place in this discussion.
This isn't a game. Check your ego and your grudges at the door. Many parents and individuals with autism are reading this site. Making light of the importance of water safety in our community is not just misleading, it's dangerous.
Posted by: mikejaws | February 14, 2014 at 10:49 AM
Our district includes DROWN PROOFING on the IPE through 8th grade and the kids have swim lessons in the school pool. Mia and Gianna can swim across an Olympic sized pool. They would NEVER know to save their own lives via swimming were they to fall into a body of water - they do not have that survival instinct - we see it over and over. No fear in a parking lot. No fear near fire. This is grandstanding by AS - a gesture to sell more light bulbs in 2 months. Pool water is blue!!!! So are the nail beds of the drowned.
Posted by: Stagmom | February 14, 2014 at 10:33 AM
Living near the ocean would be rough, how scary!
I still think they need to learn to swim as earlier as possible. I am not talking about one sneaking our of school, or the house and going it alone for a hours just one breaking aaway from a parent - and if they can swim it gives the parent at least a little bit of time. Otherwise just like my son I would easily find him sitting at the bottom of the pool so very calm - sitting and drowning. If they can swim at least it gives the parents a bit of time.
And they can get away from a care giver so easily -- how come they are so ---- clever? I noticed it was not just mine -- so many of them I have met over the years exactly how to turn around in the oppostie direction; toward the parent - up under and away.
Posted by: Benedetta | February 14, 2014 at 10:16 AM
Swim lessons? How are swim lessons going to help a child with autism who wanders (btw they wander in the water too). In my sons case he would likely keep swimming deeper and deeper. Then what do you do? We live near the ocean. One day, I was at the beach standing in the water watching my son swim. He had his swim vest on suddenly he started going deeper and deeper in. I yelled for him to come in but he kept going. Panicked I literally had to jump in our kayak, paddle out to him and grab him by the vest and pull him into the boat codfish style. Swim? oh ya, my son can swim.
You'd think they'd ask the autism families of kids who wander for some useful suggestions such as:
Lojack Safetynet tracking bracelet
wear as swim vest or life jacket whenever the child is near water
training first responders, police
training for lifeguards
we already have door alarms and double locks on the doors.
Posted by: SarahW | February 14, 2014 at 09:36 AM
Marie-Antoinette was a crushed butterfly in comparison.
Feld reminds me a lot (even physically) of Jane Asher, President of the UK's National Autistic Society and Vice-President of Autistica, the British branch of Autism Speaks. It is not awfully clear why Asher is there. CV includes being a middling actress,former girl-friend of Paul Macartney, running a business making bespoke novelty cakes and daughter of the psychiatrist who invented the condition Munchausen Syndrome (although not its "by Proxy" variant). Any personal connections with autism prior to her appointment (now a great many years ago) have never been reported.
Posted by: Leaders of Society | February 14, 2014 at 08:04 AM