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.