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).