Autism Treatment Network Doesn't Work
By Katie Wright
We have such a relatively small amount of federal money for autism research. We cannot afford to waste it on incremental and unambitious science. The ATN is supposed to be about Treatment, not summaries of summaries or reviews of the obvious. Additionally ATN is supposed to address GAP areas of treatment rather than conducting superfluous research. ATNs are located in hospitals. Parents take their sick ASD children there because of GI pain, immune dysfunction, seizures, severe food allergies, inability to sleep or stay asleep, metabolic or mitochondrial problems. They do not want ATN to summarize their child’s problem; they want ATN to develop real solutions for their child’s problem.
Examples of Typical ATN Research
Mainly 2013- 2014
Health Care for Children with ASD. (yes, as suspected, healthcare for ASD kids is poor)
Medical Treatment for Children with ASD. (not much)
Little Evidence to Support Medications for Children with ASD. (no kidding)
Little Evidence of Clear Benefit for Medical Treatments for Children with ASD. (same as above)
Evidence Based Practice and Health Advocacy for Children with ASD. (nothing much)
Here is the bottom line: ASD Kids have health problems and need better medical health care. Everyone knows this.
Communication Deficits and the Motor System- newsflash they often go together
Alarm for Toilet training- OK, bought a $3.00 egg timer. I put my son on the toilet every 30 minutes. It works, done deal, no need to spend tens of thousands studying this!
Relationship Between Restricted Behavior and Sleep Disturbance. More severely ASD people have the worst sleep problems, established over 5 yrs ago, move on
Correlates for Sleep Disturbance. Sleep Problems and Sensory Over responsiveness. Same as above
Identifying Insomnia – any ASD parent can identify this for free
The first and second ASD/ Sleeplessness Study were great but there have been a half dozen almost identical studies. ATN needed to study the biological problems causing sleepless. Behavioral interventions alone do not always work. For 10 yrs I have asked ATN to please study yeast and wakefulness. No way.
Physical Activity and Dietary Habits of Obese ASD . Can you guess what causing obesity? A mystery for the ages!
Obesity and ASD – yes, a problem!
Robot Mediated Interventions – please come back to earth where the most basic health care is still almost impossible for ASD people to find. Leave the robots for later.
ASD Family Funded Treatment Research (SafeMinds, ARI and NAA among others)
This research, sadly, is largely paid for by ASD families who can ill afford to donate this money. There is no transparency at ATN. We have no idea what their budget is. We have no idea how a parent can take part. We have no idea how they create their research agenda. There are no mechanisms for public input or reviews of their services.
Clinical Trial of NAC (treatment)
Manipulating Microbiome to Improve Symptoms (treatment)
Review Of Novel Treatments for Seizures (Here and Now Help)
Environmental Toxins and Autism (prevention)
Measuring Mito Dysfunction (desperately needed novel diagnostics)
Biomarkers for Guided Biological Interventions (same as above)
ASD Epigenetic Findings – (environmental prevention)
Spirnolactone Possible Immunological Intervention (treatment)
Gut Brain Permeability in Regressive Autism (studying giant gap area of research and intervention)
Non IgE Mediated Food Allergies and Autism (diagnostics & treatment)
Cytokine Profiles Associated with Behavioral Symptoms Following Immune Insult (diagnostics)
Nutritional Status and Dietary Supplements (treatment)
Detection of Autoantibodies in ASD (diagnostics for giant gap area of study)
Interaction Between Yeast and GI problems (treatment for major cause of night wakefulness)
ASD GI Flora - Correlation and Severity (again huge cause for sleeplessness- these problems NOT resolved via behavioral interventions)
Immune Response to Dietary Proteins (treatment)
Altered T Cell Responses in ASD (why ASD kids are always sick)
Is Autism And Autoimmune Disease? (diagnostics)
Guidelines for autism and IVIG (treatment)
Helmith Therapy and GI disease (treatment)
Immunotherapy and ASD (treatment)
Immunological Characterization of ASD (diagnostics and treatment)
Deregulated Immune Systems and Dietary Interventions (diagnostics and treatment)
Late Onset Autism and Anti NMDA Receptor Encephalitis (diagnostics and treatment)
Trial of Glutathione and Autism (treatment)
Katie Wright is a Contributing Editor to Age of Autism.
Autism Go Away...I think u are 100% correct! What we really need is his another multi million $ study on parental age!
All of you are right. ATN docs think our kids "are born with it" and they act accordingly. No wonder we are getting nowhere....
If anyone has an specific ATN experiences to share please do so.
Posted by: Katie Wright | July 05, 2015 at 11:48 PM
Thank you, Katie.
Posted by: Denise Anderstrom Douglass | July 01, 2015 at 06:08 PM
WE all know who established ATN. It's designed to appear useful to those who don't know anything about it. It is a money-making outfit and that is all it is. Unfortunately it can't be said that they are fraudulent. They don't promise much and they put in some work. Some of those people working there may even believe they do good.
The problem is that ATN acts as a screen to keep the ignorant population safe from feeling enough sympathy for those afflicted with autism as well as the families around them. To put it bluntly: Autism doesn't kill like AIDS did not too long ago. Alzheimers gets more attention because it often appears that people die from it. Their relatives have no doubt that Alzheimers patients were well before they fell ill.
There is still a great misconception that autism is something the kids were born with. It must be genetic and these kids must be the result of a "bad seed". I am sorry to have to put it that bluntly. As long as it doesn't afflict them, they are safe.
Posted by: Birgit Calhoun | July 01, 2015 at 01:21 PM
You are right, this is all orchestrated and I have heard that an AZ clinic has now said no to anyone who dares veer from the schedule.
Posted by: for Sophie | July 01, 2015 at 12:28 PM
Well, I think they should do a very large study to see if autism is caused by old parents and teenaged parents. What could be more useful? Let's put money into that! Personally, I think autism is caused by the mother. I was recently told that my son would be doing better if I breathed more slowly. Perhaps a treatment program aimed at teaching mothers to breathe better? Or better yet, study old mama mice who breathe too quickly and drive their baby mice crazy. Dysbiosis, mito, gut issues - what could they have to do with autism?
Posted by: AutismGoAway | July 01, 2015 at 10:28 AM
What is clear , is if anyone does try to seriously help the condition imaginatively called Autism , otherwise known as "vaccine maiming" , they can expect a DAWN raid by the authorities FDA\CDC\CIA . Those authorities who have a vested interest in stopping any treatment which might prove the condition can be improved upon or god forbid CURED .
Medical Tyranny is upon us .
Posted by: Sophie Scholl | July 01, 2015 at 07:53 AM
Language and auditory system stimulation (music as well as language) should be on your list.
Also, my 52-year-old son has lately been followed by a doctor from Japan, trained in Japan and China, who took my son off psych meds. My son has lost 60 pounds and his drug-induced diabetes is now under control.
This is the first doctor who asked to talk with me, about family history, my ideas about auditory system injury from asphyxia at birth, how my son learned to speak after learning to read, and my son's phenomenal knowledge of music, movies, and the memories they evoke.
Posted by: Patience (Eileen Nicole) Simon | July 01, 2015 at 06:40 AM