What do we really know?
In the sections below, we discuss what is currently known about various treatments for Autism Spectrum Disorders (ASDs):
It is clear that we still know far too little about ASDs. This becomes even more undeniable when compared to what we know about other illnesses or disorders. For example, at last count, only 53 clinical trials investigating ASDs were currently recruiting on www.clinicaltrials.gov, while nearly 6,000 were recruiting for cancer-focused studies.
IAN hopes to greatly improve our ability to generate evidence-based ASD treatments and therapies by facilitating autism research.
From “Folk Wisdom” to Evidence-Based Treatments
We at the Interactive Autism Network (IAN) place great value on the highest scientific standards of evidence. We also place great value on “folk wisdom” –that is, on people’s collective experience and acquired knowledge. This is one of the reasons we are asking parents to share their experience and observations regarding their children with ASDs.
On many occasions throughout history, there has been a path from one to the other, from people’s intuitive use of some therapy or substance to proven medical treatments. Quinine, a natural substance used for centuries to treat malaria, provides one excellent example. (See Story of Quinine.)
On the other hand, there have been medical interventions, also fiercely believed in for centuries, which were later proven to be ineffective and sometimes fatal. (See Story of Blood-Letting.)
How do we tell the difference? How do we distinguish therapies based on mistaken theories, desperate hope, or flim-flam from those that are really working? The answer is: through well thought-out and carefully performed research.
Research comes in many forms, and is conducted in many ways. Methods range from an in-depth analysis of a single case (called a case study) to surveys involving thousands of people and using statistics to draw conclusions, from interviews probing the attitudes, beliefs, and behaviors of a few dozen individuals to clinical trials testing the usefulness of new drugs. All have worth and contribute to our understanding.
Ideally, however, therapies and treatments for ASDs should be tested using a Randomized Controlled Trial (RCT) so as to meet the gold standard of proof. This method of research eliminates as many sources of bias from the process as possible, yielding the most respected and valued results. To learn more about RCTs, see Understanding Research – Randomized Controlled Trials.
The IAN Research project itself is not a Randomized Controlled Trial, but a means to finding out which of the many current therapies are worth putting on the priority list for investigation. With the help of parents of children with ASDs, we are creating a large database of our collective observations. This will help us to gather our communal wisdom and allow us to compare treatments against each other in the hope that more promising treatments can be selected for further study and refinement.
We not only want to find out what is working or not working for parents, but help link families to legitimate autism research studies so that high-quality studies can take place, moving us along the path from “folk experience” to “scientific evidence.” Valid treatments can be legitimized and made available to those who need them. Ineffective or dangerous treatments can be debunked and our children protected.
We hope you will join us, and we urge you to spread the word about IAN.
