Autism Treatment: What do we really know?
It is clear that we still do not know enough about autism spectrum disorder, especially when compared with what we know about other conditions. For example, in December 2013, 131 clinical trials investigating autism were currently recruiting on www.clinicaltrials.gov, compared to 604 trials investigating asthma and more than 10,000 trials researching cancer.
The need for more, proven treatments prompts many parents to pursue their own research — often using the "trial and error" method. One quick Google search yields close to 1.5 million "hits" on the topic of "ASD treatment" — truly everything you would want to know about treating ASDs. A preliminary study conducted in 2004 by Dr. Vanessa Green and colleagues1 found that over a hundred different treatments were being tried by families across the United States and that, on average, parents were using seven different treatments at one time for their child. The number and types of treatments being used varied with the child’s age and the severity of the child’s disability. Many of even the most commonly used treatments lack empirical support.
It’s overwhelming for families to navigate this mountain of information. Although many start with the drive and determination to find the best single treatment or combination of treatments for their child, it doesn’t take long to become tired and discouraged.
In our own month-long review of websites identified using Google, we compiled a list of over 180 treatments and/or therapies. The treatments promoted are as vast and varied as the autism spectrum itself, ranging from the commonly accepted standards to the exotic and possibly dangerous. While some options offer reasonable solutions to discrete problems, others promise a cure and/or complete recovery from ASD. Almost all require a checkbook and/or credit card.
For service providers and other professionals in the field — including researchers — the landscape of ASD treatments and therapies offers just as many frustrations. The diverse nature of the disorder makes it particularly hard to diagnose and treat as well as to research efficiently. In response to this challenge, researchers are now attempting to identify groups of children on the spectrum with similar characteristics (known as "subtypes of autism"). By focusing on a subtype of autism, it is hoped, treatment studies can be better targeted to certain symptoms and thus be more likely to yield positive results.
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 children protected.
We hope you will join us, and we urge you to spread the word about IAN.
What are we learning about autism treatments being used by families in the United States who are participating in IAN Research? Read our Treatment Series.
- Green, V.A., Pituch, K.A., Itchon, J., Choi, A., O'Reilly, M., & Sigafoos, J. (2006). Internet survey of treatments used by parents of children with autism. Research in Developmental Disabilities, 27(1), 70-84. Abstract