The Autism Treatment Network needs help.
In theory ATN is an excellent idea. ATN member hospitals could specialize in providing medical services to ASD patients. We all know how unfamiliar most doctors are with the chronic medical problems many ASD people endure. It is a great idea for interested hospitals to conduct relevant research and provide cutting edge diagnostics and treatment to the underserved ASD community.
Early on there were a few bright spots at ATN. In 2009 at the urging of many, many parents ATN held a GI conference and released and important consensus statement on the prevalence of the disorder in the ASD population.
ATN also has done nice work on creating guidelines for treating constipation (why they leave out diarrhea is beyond me, 2 sides of the same coin). ATN has done a great deal of early identification and early ID work. It is good science but ASD parents don’t take their kids to the hospital to ask for more learn the signs research, additionally there are endless funders of early ID and learn the signs science.
Sadly in recent years, the Autism Treatment Network turned into the Autism Data Collection and Psychological Research Center.
There is very little cutting edge research going on at ATN and far too much investigator driven incremental academic science. I am also very tired of hearing complaints from ASD parents who cannot get good medical help for their autistic kids at ATNs. Or if excellent medical help is available at a particular ATN the waiting list for that specialist is a year and half!
ATN has spent millions, probably tens of millions on data collection, support staff, salaries and mediocre research. It seems to me that creating ONE cutting edge full service GI clinic and one decent immunology clinic should have been a priority. ATN needs to stop referring people out and start spending the money they do have on patient service, not overheard and not academic science that isn’t helping anyone.
I was absolutely exasperated by two recent ATN studies made. The first was the Stewart study from University of Rochester. What a train wreck! Headlines everywhere trumpet conclusions that supplements are dangerous to ASD kids. Never mind what the average ASD kid IS actually eating: processed carbs, tons of sugar, fried food, soda…No, the real problem is that Vitamin C tablet you give your child! Please. The authors studied a 3 day (yes just three days!) food dairy of 100 + ASD kids.
Again the investigators never saw the kids, no blood work, no urine or stool samples they just added up nutrients from a 3-day diary. Imagine a caloric intake study using men, women and children as subjects and evaluating their diets as if all were 150 lb men. For a professional’s take on the study read this.
Dieticians are great people to turn to if you have a heart condition or Type 2 Diabetes. Unfortunately few are experienced with ASD health issues such as leaky gut. Almost none have any training in methylation or the blood brain barrier. Additionally, many older dieticians were trained in the era of the food pyramid – when carbs were king. I think these are the problems plaguing the ATN dietary intervention staff.
It also annoys me that AS’ Medical Director Dr. Paul Wang is always telling ASD families to hire a dietician. First of all almost no ASD families have the money for a private dietician! Additionally isn’t that what ATN should be providing its consumers, nutritional counseling, for free? ATN had Kelly Barnhill at their conference last year. Barnhill is a lot more than a dietician and really knows what she is doing. Why isn’t Barnhill running ATN dietary intervention research?
The second ATN study (Ferguson) hypothesizes that stress exacerbates and or is a causative agent in ASD/ GI disease. So inane. ATN is supposed to help physicians take our kid medical problems SERIOUSLY not frame them as psychosomatic.
Of course stress is bad, that is a given. More water is wet science. But stress is not causing the epidemic of GI disease among ASD people. If only it were that simple! I think I speak for most ASD families when I say our lives revolve around NOT stressing our ASD child out. We avoid loud places, long lines, crowded events, place with flashing lights (the list is LONG) and always have a bag of appropriate snacks and sensory items wherever we go! Isn’t this the norm? ASD families are experts in avoiding or mitigating stressful situations for our kids.
Does stress cause appendicitis? Is stress causing celiac disease? Autism families do not have time for this nonsense. This is not playtime ATN. The medical problems plaguing ASD people are serious, pervasive and largely untreated. We need novel treatment interventions- now- not small time, redundant science.
My son has ulcers in his intestines; they are there because of his leaky gut, not stress. Remember H Pylori? Doctors thought it was caused by stress? No, it is caused by bacteria. You can renounce your life, your possessions, become a monk and live on a mountaintop and the GI disease will not go away. It is not about stress.
This ASD “stress” research reminiscent of 1950s psychiatrists who insisted menstrual pain wasn’t real, just a psychological manifestation of girls not wanting to become women. We need to keep psychology out of ASD medical science. Enough already. We don’t want ATN spending our scarce medical research dollars on juvenile hypotheses.
ATN should be doing research on treating GI disease – and not just with that poison Miralax (as if happening with the AS Levitt GI study). ATN should be researching using anti-inflammatories for gut pain. ATN needs to be researching identifying and treating dysbiosis early on before real damage is done. ATN needs to be researching real dietary interventions and autoimmune interventions for all the kids with PANDAS.
How do bad studies like these get approved? A speech therapist is the director of ATN. Does this make any sense? Who is the accountable for such poor funding decisions? Why is there no financial transparency at ATN? I cannot get a straight answer about how much AS funds ATN or how much the NIH funds ATN. We have no idea who is choosing these grants. The anonymous stakeholders who do participate are chosen by the ATN, thereby ensuring unchallenging voices. There are no mechanisms for public feedback at ATN. ATN offers no pathways for wider consumer input.
I am guessing, because there are no financial documents available, that ATN is largely financed by tax dollars? I want my money back.
Katie Wright is a Contributing Editor to Age of Autism.