The Autism Treatment Network Needs Help
By Katie Wright
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.
re Eileen Nicole Simon, I think what I remember is not about recovery from autism, per se, but the jump in global development after recovery from a common childhood disease.
Posted by: Theresa 66 | June 29, 2015 at 08:50 PM
Theresa 66 - Frances Ilg and Louise Ames appear to have continued the work of Arnold Gesell at Yale. I see several of their books in the library catalogue, but nothing about recovery. They span the years 1937-67, and it would be interesting to see if they discuss autism at all.
Posted by: Patience (Eileen Nicole) Simon | June 29, 2015 at 06:17 PM
Katie, Thank You for being tireless in Your pursuit for justice. It seems greed takes over as soon as someone/ or some group says they well help. Would love Your view on IVIG, as our tiny doses don't seem to be working.
To Eileen Nicole Simon, and all.... Does anyone remember a book about child development explaining the jump in a childs cognitive, gross motor, ect... after a childhood disease ? I was thinking Ilg and Ames, but can't find that book here. Anyway, what if we are vaccinating the chance for normal development out of our children ?
Posted by: Theresa 66 | June 28, 2015 at 07:01 PM
Katie, thank you for pointing out the ATN, new to me. I found a 2005 article by Werner, Dawson et al. on regression. What I don't understand is why pediatric records aren't examined. I disagree that pediatricians can't assess developmental delay. They can, but believe parents should be discouraged from comparing their child to those of friends, neighbors, or "milestones" in books or online. At my local library I found a book written in 1935 by Arnold Gesell in which he documented expected milestones in movies!
Also, do you know what is happening with the IACC??? The secretary of HHS is supposed to appoint new members. I have written to her and other HHS people on hhs.gov, but have gotten no responses. Autism is clearly not a priority at HHS.
I have written to President Obama suggesting that autism should be a primary focus of his "Brain Initiative." But as always get the same old response that he wants to level the playing field for all disabled people. It is disappointing (and outright disgusting), but autism appears to be only a plaything to be kicked around between all our federal agencies.
Posted by: Patience (Eileen Nicole) Simon | June 28, 2015 at 01:34 PM
I love you, Katie Wright! "Autism families do not have time for this nonsense!" For my son, the "custodial parent," I thank you for your guts to speak out like you do!
Posted by: Denise Anderstrom Douglass | June 27, 2015 at 11:04 PM
Margaret:
I know what you mean by they had something but not autism.
My son had three vaccine reactions and the peds still insisted on that third time -- Not the fourth though.
He had a stroke on that third one. He has two white spots on the front of his brain about the size of quarters to prove it - Ischemia damage they called it .
I never thought he would - come as far as he has. He was not speaking - he was not engaged with the world - his fine motor skills -were not good and still are not great.
Yet, he went on to college has an AA degree in electronics, electrical construction. He had a job - but not right now - I hope that he will have again. He had a part time job recently - customer service??? __!!!!! Well he did alright.
On the other hand I have a daughter that was perfect - she had Kawasakis as a child, from a vaccine. After that she was at moody, but her fine motor skills were great - she graduated first in her high school class, she has a BS degree in biology and BS in nursing. Her teen years she began to be really moody and then just too happy.
Further vaccines - and many years later we have bipolar. and it is not a small mood swing but a large one.
Again she has no job. I think we got this mood swing thing under control, but there is still no job and the board of nursing plans on her never holding another job. And so life goes on.
Buying health insurance is eating us alive.
If
Posted by: Benedetta | June 26, 2015 at 07:14 PM
Hi Margaret,
I think you are referring to a 10 yr old Geraldine Dawson study. Yes, I think much to the researchers surprise, there was absolute confirmation that many babies were completely typical at their first birthday party. The babies were happy, related displaying age appropriate motor and speech skills. However these same babies definitely displayed very autism specific behaviors at their second birthday. There was much less eye contact, more sensitivity to sound, and often a loss of speech.
Incredibly almost no one has wanted to discover WHY this happens. Instead most research has focused on how parents missed subtler clues" that were there all along." OR research has focused on finding underlying genetic causes for regression. Either way, such research has accomplished nothing. I think the whole subject makes doctors an researchers uncomfortable. They do not want to believe it and this ASD trajectory does not square with "you are born with it," belief.
Only Feingold, Bradstreet, Rossingnol and a few others have really delved into biological causes for regression- and their science is really sound.
Posted by: Katie Wright | June 26, 2015 at 06:18 PM
@ Margaret
Some years ago there was a study carried out in the USA where first and second birthday party videos were examined 'blind' by people who didn't know what they were looking for. To some people's surprise (but not mine nor many other Autism Mothers) there were found to be significant differences in some children.
Is there a very kind, knowledgeable person out there who could inform both of us of the origin of and link to this study?
Interestingly, doctors hurriedly change the subject when I point out that we have dated camcorder footage showing normally developing fraternal twins until their MMR when one twin recovers after being off-colour for several weeks while the other twin (also off-colour) loses eye contact, totally loses their developing speech, etc. etc.
Posted by: British Mum | June 26, 2015 at 02:52 PM
The big problem with autism research is that it concentrates on very young children. That means problems with control groups because no decent parent will risk a placebo over the real thing. Children also change, with or without a disability. I know a number of individuals who supposedly "recovered." I doubt they had autism. They had something, certainly, but I suspect that without therapies, they would have ended up in the same place. ALL research should involve adults where we can have control groups and we don't have to deal with maturation impacting the results. With rare exception, studies that only deal with young children should be viewed as scams.
Posted by: Margaret | June 26, 2015 at 01:20 PM
So well-stated, Katie. Thank you for this information, as I was not even aware of ATN (sounds like I wasn't missing a thing, though).
The amount of money (millions/billions), time (as in YEARS), and energy (tremendous amounts by parents; in the wrong direction and abysmal by those getting paid) that have been WASTED by one entity after another supposedly created to help with the autism EMERGENCY are inexcusable and reprehensible.
Meanwhile, hundreds of thousands (millions, if we're talking worldwide) more children have been added to the autism/vaccine-injured body count. Seems clear that the people working at these government/pharma-funded autism entities are answering to the same people to whom our legislators are answering.
Posted by: Laura Hayes | June 26, 2015 at 01:02 PM
I think the biggest issue with ATN is it's the child of Autism Speaks. Remember, this is the organization who posted on their home page their stand on vaccines; They do not cause autism. Therefore, for ATN to go in the direction it needs to would mean they almost have no choice but to end up with the question; Why are there a plethora of viral and bacterial pathogens, parasites, heavy metals, etc. in people with autism? For all the obvious reasons this is not in the best interest of A.S. Money, money, money and oh yes, ego.
In the 23 years I've been dealing with my own son's chronic infections, no matter how well documented, every new doctor I see still gives me that glazed over blank look. It's not worth my time anymore to try and convince those who do not want to be convinced. It's a matter of picking your battles and I think attempting to convince the ATN they are going in the wrong direction is rather futile. A better way perhaps would be to hack in and put a referral on their site which states something to the effect; If you want real, proven bio-medical help for your child click here. and send them off to the Autism One 2014/2015 conference page where they will get the education they truly need to help their child.
Posted by: Sherri | June 26, 2015 at 12:44 PM
I just found out that being anemic - being low in iron - can cause itching.
So after a life time for my Mother, My Father, My husband and Myself now I know.
Eating a bunch of what pizza dough last month - with my son because he thought he needed a treat after being stressed from being laid off and going to the unemployment office - Well a month later and I am still paying.
I have taken two afternoon naps two days straight and I never take naps. Apparently the gluten did not allow my gut to absorb iron See how delicately we are balanced!
Being anemic also will allow yeast overgrowth, and probably every other microbe including strep. Although I am beginning to think that I really only had that one time in my life the rest was wheat and being anemic.
Just thought I would pass that little personal discovery along. That and the fact that I was addicted to crushed ice; as was my Mother, and My daughter - for many years before I found out that that too was a symptom of anemia.
Take a little iron and that all consuming craving goes away. Well; so does the itching!.
Anemia and the B vitamins; and at the very least - not gluten is where it is at, hardly - behavioral modification therapies. ----- And it takes lots of vitamin C to help the body to absorb the iron.
Now how are they measuring anemia? My kids began to have anemia before they were even one year old. For heaven sakes
Posted by: Benedetta | June 26, 2015 at 12:30 PM
Thanks for the link to Judy Converse's evaluation and shining a light again ... I'm pretty disenchanted (disillusioned?) with the whole idea of taxpayer funded research ... crowdfunding...?
Posted by: Jeannette Bishop | June 26, 2015 at 12:13 PM
I forgot to write that I want to hear about your experience with ATN. If you have had a great
experience or a not so great experience, please share it. Thanks!
Posted by: Katie Wright | June 26, 2015 at 11:22 AM
Very appropriate commentary. We all respond differently to different therapies, but there are successful treatments for gut dysbiosis, such as the GAPS diet. I suspect what is going on here is a combination of sheer incompetence (common in the medical industry), disinterest, and the warping influence of pharmaceutical-driven medicine and the Dietary Guidelines. Making more noise doesn't always get the results we need (as those of us who oppose SB 277 learned), but it can help nudge things in the right direction (as we also learned-we turned eight Democrats against it). Powerful political support would help, but politics runs on money, not on knowing the difference between right and wrong.
Posted by: Gary Ogden | June 26, 2015 at 09:51 AM