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.
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.