Autism Woke: The Pie in the Sky Failure of The Autism Speaks Autism Treatment Network
You couldn't design a worse system than anything launched by Autism Speaks. The Autism Treatment Network is, as my dear old Dad used to say, "Like the sleeves off their vest." Or my favorite, "Like a fish needs a bicycle." Useless. Katie Wright details the travesty - well funded, back pats galore, fully employed professionals, University cred, all while individuals suffer and families slip deeper into debt, despair and doubt.
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The Autism Speaks Treatment Network is an embarrassment.
In twelve years of its existence, ATN received tens of millions of taxpayer dollars and accomplished virtually nothing. ATN gives new meaning to setting a low bar in autism research.We know how low the bar is, so that's quite an accomplishment! Autism Speaks and the NIH should cease funding wasteful project immediately.
ATN was founded because autism families were having an impossible time finding medical care for their children. This is especially true regarding ASD kids with GI problems. In the waiting room of Christian’s pediatric GI, I regularly meet parents from PA, OH, MD and other far away states. It should not be so difficult to find a GI who knows how to treat our kids.
The NIH has yet to fund 1 ASD/GI clinical treatment study. ATN was created to fill that gap. They were supposed to do urgently needed medical treatment research. Treatment research, not just addressing GI problems, but autoimmune conditions, PANDAS, intractable seizures, etc…..
However none of that happened. The director of ATN for twelve years, is, incredibly, a speech therapist! That says everything you need to know about ATN’s commitment to helping medically affected autistic kids. The vast majority of ATN research is redundant, dated or useless, telling us what we already know.
For 12 yrs ATN has researched ASD sleep problems behaviorally only!! This is inhumane. A friend took her son to their Vanderbilt sleep clinic and, of course, none of ATN’s “treatments,” basically sleep hygiene, worked.
When behavioral interventions don’t work for night wakefulness you must immediately look into biological causation of sleeplessness. In my son’s cause it was an overgrowth of candida causing the sleep problems. The rashes are a giveaway. Elimination of sugar, simple carbs and a round of antifungals stopped this seemingly intractable problem. This problem was destroying my family. We had not sleep through the night for years. Other families should no longer be suffering this fate.
ATN’s GI research is basically give the kid Miralax! Ok, we did that in 2000! Since then we have learned that Miralax is incredibly toxic and should not be given to anyone under the age of 17! CHOP did a study exposing the fact that Miralax contains an excessive amount of arsenic!
These are just some of the ridiculous ATN research you have financed:
1) Causes of obesity in ASD kids. Guess what?? Bad food and lack of exercise!!
2) Relationship between GI problems and stress! Yes! They are related!
3) Association of repetitive behavior and sleeplessness. Helping no one and telling us what we already know.
4) Communication deficits often associated with motor system deficits. Once again, research helping no one leading to nothing.
5) Creatine deficiency in ASD kids. This was established almost 20 yrs ago.
6) Parents of ASD kids suffer from chronic stress!! And grass is green!
7) Caregiver education level and ASD child with sleep issues. I find this just plain insulting,
8) Decreased Sound tolerance in ASD kids. NO!! Shocking
9) Medical care and associations with depression. Who isn’t depressed when they need medical help?
11) Walking! Walking is a possible option for promoting exercise in obese ASD people. I mean, can you even believe this??
12) Sex differences in repetitive behavior. Families have really been clamoring for this one!
13) Behavior impairments can be caused by sleep problems. Yes, they ARE related!
14) Hand-writing problems in autism. A top priority in autism community!
I’ll tell you what ATN did not study- treatment for GI disease, treatment for PANDAS, treatment for immune deficiencies (IVIG), intractable seizures and CBD, food allergies (a large % of ASD kids have undx celiac or gluten intolerance conditions).
The nutrition studies ATN conducted are dated and useless. None studied the Specific Carbohydrate Diet. It was the same old study of kids eating any kind of junk food, just no dairy or gluten. They are still eating sugar, processed food, artificial flavorings and coloring, MSG, etc.
Having failed to provide any medical help to the ASD community, the ATN is officially transitioning away from the facade of medical research network. They have renamed themselves The Autism Cares Network, the irony, right? Their new focus is basically political- social justice issues, equity, autism is a superpower narrative, bringing the “actually autistic” (the healthiest population!) to the table, an autistic review board and, my favorite, “ending the pathology around autism.” Parents of nonverbal kids with severe medical problems nowhere to be found.
I remember the day the ATN was formed. So many parents had been sending Autism Speaks pictures of medically affected kids that showed the effect of constant pain- kids who poked out an eye during hours of unbearable pain, teenagers in diapers because the diarrhea won’t stop, kids with no hair because they pulled it all out, children with cuts and bruises all over their head and arms from self-injurious behavior. Families also sent pictures of beaten siblings and parents. They all were asking for help and finding none.
I am sure the parents of the severely affected autistic boy who poked out his own eye in a frenzy of GI pain induced injurious behavior will be thrilled to know that ACN is now staffed by Social Justice Warriors who will conduct “strength based” autism research!!
It’s absolutely shameful the ATN abandoned these vulnerable and suffering children. It’s even worse that they have morphed into a parody of insufferable autism progressivism. ATN - Autism WOKE.
Thank u all for your brilliant thoughtful comments!!!
I don’t think I would donate my son’s brain to brain net. I’m concerned they wouldn’t do useful research and/or treat it with respect, 10 yrs ago a dozen brains were ruined by an ancient, malfunctioning temp monitor.
Posted by: Katie | June 24, 2022 at 10:11 PM
Will there now be a shortage of HUMANIZED mice?
https://www.lifenews.com/2021/05/06/anthony-fauci-gave-scientists-over-400000-to-make-humanized-mice-with-scalps-from-aborted-babies/
What will our MAD SCIENTISTS do?
https://www.breitbart.com/politics/2022/06/24/maxine-waters-on-dobbs-ruling-the-hell-with-the-supreme-court-we-will-defy-them/
Posted by: Emmaphiladelphia | June 24, 2022 at 05:40 PM
Emmaphiladelphia,
You continue to grow on me. Few teach me these days. You are one who does.
Posted by: Visitor | June 24, 2022 at 10:11 AM
I would like to take my son to donate blood. I heard Dr. Mercola say he donates 3-4 times per year to get rid of excess iron. I wonder if people who receive blood from ASD donors develop ASD?
There is this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340509/
I was trying to find who is the largest donor to Autism Speaks and found this: https://www.opensecrets.org/orgs/autism-speaks/totals?cycle=A&id=D000047522
I guess the biggest donor is a closed secret.
Posted by: Autism Mom | June 23, 2022 at 07:23 PM
@Autism Mom
Is this the group that collected "autism" brains from deceased children in 1988 and stored them in a freezer that suffered a mysterious "malfunction" in which the tissue thawed and became unusable for research?
"The Simons Foundation and Autism Speaks created Autism BrainNet in 2014, building on the Autism Tissue Program created in 1988 by the National Alliance for Autism Research (NAAR) and Cure Autism Now (CAN), two of the legacy organizations that became Autism Speaks."
Looks like the fox is guarding the hen house....
Autism BrainNet and NIH NeuroBioBank Partner to Advance Autism Research
"Simons Foundation and Autism Speaks have entered into an agreement with the National Institutes of Health to align two of the world’s largest repositories of donated postmortem brain tissue for medical research: Autism BrainNet and the NIH NeuroBioBank.
The partnership will produce a unified resource for neurological research by aligning the procedures that the two repositories use to collect, prepare and preserve the field’s most precious and limited resource – the human brain. The agreement will also establish shared standards and strict criteria that researchers must meet to obtain tissue from the two brain banks.
“The collaboration between the NIH NeuroBioBank and Autism BrainNet is a key step in developing the necessary resources to understand and treat autism spectrum disorder,” says NIH NeuroBioBank project officer Michelle Freund."
https://www.ageofautism.com/2022/06/autism-woke-the-pie-in-the-sky-failure-of-the-autism-speaks-autism-treatment-network.html#comments
This was in 2015!
An NIH Jobs Program.
Posted by: Emmaphiladelphia | June 23, 2022 at 06:16 PM
Autism Speaks budget was $9 million in 2015 and $47 million in 2021. They are hiring! If you want to gaslight people for a living.
Is there a way to save our son's and daughter's brains?
https://meridian.allenpress.com/aplm/article/145/4/494/444122/Autism-BrainNet-A-Collaboration-Between-Medical
The link above says: While performing neuropathologic examinations of the postmortem brains from individuals with autism collected into Autism BrainNet, increased numbers of perivascular CD8-rich T-lymphocyte cuffs were observed in approximately 65% of autism cases relative to control cases (Figure 1, A–L). In addition, a unique pathology, astrocyte membranous debris, was found in the Virchow-Robin perivascular and subarachnoid cerebrospinal fluid spaces, which resemble the blebs generated when cytotoxic T-cells attack tumor cells (Figure 2, A–O).56 Interestingly, the quantity of these GFAP+ astrocyte blebs (Figure 2, D–I) correlated to the number of lymphocytes across the autism cases (Figure 3). While still under investigation, these findings suggest the possibility that a lymphocyte-based adaptive T-cell immune response might drive the inflammatory state of the brain in autism. These exciting new findings represent possible new therapeutic targets that are not yet a part of the standard treatment for ASD and could positively impact the lives of many individuals and their families. Further studies of the human postmortem brain in ASD are essential to justify and motivate the expensive clinical trials that will need to be performed to advance the standard of treatment in autism based on these new and exciting findings.
Posted by: Autism Mom | June 23, 2022 at 02:33 PM
@Gayle
What is the cause/definition of "neuroimmune dysfunction syndrome?"
If you read the previous AOA article, "Vaccination and Chronic Disease," I think you will find the answer.
https://www.rescuepost.com/files/dr-richard-moskowitz-vaccination-and-chronic-disease.pdf
If we don't properly identify the CAUSE, we will not properly cure or prevent future cases.
Covering up the CAUSE with our tax payer dollars is quite profitable for those in the industry, but DETRIMENTAL to the victims. This is criminal.
Posted by: Emmaphiladelphia | June 23, 2022 at 01:35 PM
Autism Speaks stopped speaking to me long ago, when they let Big Pharma off the hook saying there was no correlation between vaccines and autism. Buh bye.
Posted by: Marie | June 23, 2022 at 01:02 PM
Katie-I'm so glad you agree with DR. Goldberg that our children have a neuroimmune dysfunction syndrome! Please post to all social outlets and any connections that you have to Autism Speaks, NIH, CDC and any other medical people who can help us! Thank you and I hope we will finally succeed!
Posted by: Gayle | June 23, 2022 at 11:27 AM
Agree! For our kids autism IS a neuroimmune disorder. ATN's research is a total disgrace, given the amount of chronic illness and continual suffering of our kids and families. Tweet about it to Autism Speaks. they need to know we are paying attention.
Posted by: Katie | June 23, 2022 at 10:55 AM
Great article!
When I was kind of naive about this stuff I went to a meeting of one of these autism groups in Montpelier. There was an incredibly boring talk by some autistic young man who had written a couple of books about overcoming adversity. I can’t remember what else. All totally useless.
I described this to Andy Cutler who welcomed me to “the new, child sacrificing religion.”
Those of us who have any understanding of this religious construction had no trouble seeing through the pandemic nonsense in a flash.
Posted by: Rebecca Lee | June 23, 2022 at 09:23 AM
Katie-These waste of time and money studies are a total DISGRACE! I have an adult son with autism and I am appalled at the extreme lack of progress in the research of the causes and correction of all the conditions that you mentioned associated with the autism condition. My son also suffers from seizures and has an over active thyroid. We have been helped by a doctor in California, Dr. Michael Goldberg, who has published a book called "The Myth of Austism." This book documents all the health issues you mention and he says our children are suffering from a "neuroimmune dysfunction syndrome." He says the cure for this illness/disease are medications known as "immune modulators." These can regulate and correct the immune dysfunction and actually provide a cure for the misunderstood autism condition. The book is published by Skyhorse Publishing. I encourage everyone to read the book and spread the word on all social media sites you use that there is hope for a real cure for our children.
Posted by: Gayle | June 23, 2022 at 08:39 AM