Failures of Autism Speaks

July 7, 2016
Barry Segal, Founder of Segal Family Foundation & Focus for Health

When I got started with autism, I met Katie Wright early on, and she introduced me to her parents Bob and Suzanne, the founders of Autism Speaks (I’m sorry to hear that Suzanne isn’t well). Bob and I got along, and he was aware that some children are susceptible to vaccine injuries. When I saw how Autism Speaks refused to deal with environmental influences on the development of autism, I did whatever I could to try to get them to change. But Bernie Marcus originally funded them, and because of his relationship with Julie Gerberding, that wasn’t ever going to happen.

Their legislative failures are abundant:

autism
The organization supported bills that actually caused harm to families dealing with autism, precluding autistic individuals from mainstream medical treatment and imposed age caps and lifetime spending caps. The Autism Speaks bills completely ignore medical issues like GI issues, seizures and mitochondrial disorders, as well as treatments such as physical therapy, speech therapy, and occupational therapy. They refused to sign onto a bill that had the endorsement of nearly every other autism organization in the country. When Autism Speaks refused to collaborate with other organizations, the autism community suffered.

In 2011, they supported the Combatting Autism Act that put zero dollars towards environmental causation of autism. When it was reauthorized in 2014, they went along with renaming it the Autism CARES ACT, as if autism was some sort of benevolent actor. They are heavily influenced by the insurance industry. The lobbying company they hire to pass these bills (Manatt) represents over 180 HMO’s.

Autism Speaks has been completely missing in action in response to “educational reform” which in many places has gutted special education and now requires the passing of multiple standardized tests in order to graduate from high school, making the situation of people with autism related learning disabilities far worse.

Their failures in the research arena are even worse:

Katie Wright recently wrote an article on the amount of money that Autism Speaks has wasted on research – millions more than the organization has wisely spent. Since 2005, Autism Speaks has raised and spent more than half a billion dollars, and they have nothing to show for it. We still don’t know what causes autism, we have no treatments, we have no cure, and we still don’t even know how many people have it, nor do we have any accepted biological markers. Children today are just as likely to develop autism as they were $500,000 million dollars ago. They’ve saved no one.

By observing the actions of Autism Speaks, it becomes obvious that they have an agenda, but it is not one that involves solving the autism epidemic.

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Stay Informed. . . Stay Healthy!


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15 Comments

Trace Farley

Great article but I’d Ike to correct one ststement. You said ‘Children today are just as likely to develop autism as they were $500,000 million dollars ago. They’ve saved no one”.. implying there’s an equal chance today.

Actually, children today are much more likely to develop autism. Just a minor correction as I’m sure you’re well aware of this.

Keep up the great work, Trace

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Daniel Soria

The correct statement is that autism is diagnosed more, not that it occurs more. There is absolutely no evidence to suggest that autism is more prevalent.

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LW

you have got to be kidding – from 1 in 10,000 to 1 in 45 – yep, just better dx – you keep telling yourself that until it’s 1 in 2 as senior MIT researcher Stephanie Seneff, PhD, predicts.

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Ettina

Autism is just as common in adults as in children. Is it rising for all ages?
http://jamanetwork.com/journals/jamapsychiatry/fullarticle/211276
Autism awareness efforts show a biased sample of the more ‘severely affected’ children, and deliberately make them look worse than they are. Did you have a geeky classmate that everyone picked on? They were probably autistic. That’s what most of the increase is – socially awkward smart kids with subtle gaps in understanding getting diagnosed while their forebears struggle on without any help. My Dad, if he were growing up today, would almost certainly have been diagnosed – he’s more autistic than I am. But in the sixties, kids like him didn’t get diagnoses.
Don’t forget deinstitutionalization and mainstreaming, too. The kids who couldn’t function in regular society, whether they were diagnosed with autism or with mental retardation or childhood psychosis (which, incidentally, has decreased dramatically at the same time as autism has increased), you wouldn’t have seen most of them. They’d have been in special classes, special schools, or institutionalized. Just because you didn’t see them doesn’t mean that they didn’t exist, hidden from your view.
But autism organizations really don’t want you knowing the true history of autism, because the false epidemic creates panic. And panic helps them make money.

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Josephine Befumo

Close Autism Speaks there are honest organizations out there. Please do the research on Autism Speaks and see how harmful .

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Lisa McCarthy Towe

Well as always Autism Speaks speaks for no one but themselves.

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Denise Otten

Thank you Barry for that informative piece. I didn’t realize where the dollars were spent but I did notice that Mr. Wright doesn’t speak to how it’s caused and the many holistic methods that help some children reverse some or all of their symptoms.
AND…WE DO KNOW WHERE IT COMES FROM . Please, Please Barry, watch the documentary VAXXED. Without prejudice or question. Go with an opened mind to learn what a CDC SCIENTIST who turned whistleblower reveals. Yes…that he read the reports of how THE MMR VACCINE WAS CAUSING AUTISM …and even more in Black Males. Please, please see the movie, ask to read the research that they were given by the Whistleblower. THE TRUTH IS BEING TOLD. Do the research …but first…see the documentary. I’m sure the producers will give you FRONT ROW SEATS.
Blessings and thanks again for your honesty.
A mother of a vaccine injured child. But I healed her!

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Eric Durak

Autism Speaks seems like most of the other big money non profits. The Susan G. Komen Foundation has spent millions on the “walk for the cure”, but they are no closer to one, thanks to ignoring environmental issues. The Jerry Lewis MDA Foundation was recently contacted by Dr. Joel Wallach – who performed three separate research studies on micro-nutrients and the cure for MDA. The results? Lewis was fired from the BOD, and there are no more telethons. When organizations’ main concern is simply fund-raising, then the minushia of actually dealing with the issue gets lost. As a health promotion professional – I have some good ideas as to the causes of diseases – even with autism. However, many are prevented from discussing it because only the pharma industry can use the word “cure” with their potions and pills.

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Yvette Arellano

Hello, I am a doctor of Oriental Medicine and a mother of a child with a dual diagnosis of autism & Downs. He eats all organic & super foods, as well as a product called Asea that helps him sleep. As with him & all my other patients that I treat, I’m seeing more complicated illnesses at younger ages. I definitely have my ideas to those causes & that’s another conversation. Eric Durak I would like to hear you ideas. As I will continue my quest for the health of my child, and in turn share that with others.
dryarellano@gmail.com
Ultimately, this is another example of how systems have been ran inefficiently with not many real results. Thank you Barry & all your insightfulness through the years. You have made many impacts on my life!

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Jennifer Giustra Kozek

AutismOne, Epidemic Answers, Generation Rescue, Autism Hope Alliance & others are much more worthwhile organizations. They are proactive health advocates – fighting for our kids daily. #KidsRecover #BiomedWorks -I hope folks will find those- Jenn (HealingwithoutHurting)

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LW

You suck autism speaks. Ive known it all along. Your policys and fund allocation have hurt my son – my family – and so many others. If Bob Wright knew all along about vaccines causing damage to our kids – he has blood on his hands – his influence has perpetuated this madness. So many kind well meaning people donate to your BS organization thinking they may be doing their small part to help our kids – shame on you.

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Jaimi

Thank you for writing this and helping to expose the truth about this misleading and un-helpful organization. As a parent of a child diagnosed with autism, I have become painfully aware of how little the majority of organizations such as Autism Speaks actually are doing to help people with illnesses of any kind. It baffles me that people do all of this work to raise money for “cures” for this, that and the other…when it’s so obvious that the industry doesn’t want anyone to be cured. There is no money in the cure. If people want to find cures…you need only look to what you are eating and drinking and putting on and around your body. We live in a toxic soup…clean up our environment and people will get well. It’s pretty simple. But there’s no money in that…nope, we need illnesses so we can develop drugs for them. Sad indeed. Many of us parents out here do know better however, and we help our kids who are indeed suffering. through dietary changes, supplements, therapies and much more.
Thank you for sharing these truths.

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Chris Smith

I was similarly frustrated trying to get Children’s Hospital of Philadelphia and NIH to add a very simple question to their upcoming studies a few years ago. I simply wanted them to survey parents of autistic children and controls for family food allergies and non-IgE food sensitivities. They refused, claiming that parental recall and reporting is unreliable and biased and in their opinion, no reliable test was available. However I see that others are looking at the connection between food and chemical sensitivities and it appears that a predisposition to allergies/sensitivities and a “trigger” looks like it can set some children off to years off ADHD or autism. My limited experience with a food diary and then targeted elimination diet approach was very supportive of the link between food and autism. Has anyone else experienced this?

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