Watch “Miracle or Nightmare?” on abcnews.go.com

I think it is very important that everybody who either has a child with autism or works with the child with autism takes the time to watch this series of videos.  They are about what can happen when we simply ignore science.  They are about facilitated communication which came to light in the U.S. in the early 90s. At that time it was seen as a miracle cure. People all over the country were having their children facilitated. It is a form of communication that involves somebody holding a wrist or elbow to “facilitate” typing. All of a sudden individuals who could never communicate before were typing out wonderful things.  Children with profound impairments were leaving special education classrooms and entering general education classes, doing grade level work.

It wasn’t long back in the early 90s when things started to go bad. All of a sudden some children started typing things about terrible abuse at the hands of their parents. At this point things needed to be looked at very carefully. Children’s lives were at stake.  Parents lives were at stake. When the scientific community started examining facilitated communication carefully was documented in study after study through rigorous scientific experimental methodology that facilitated communication simply did not work. It was basically the facilitator, unknowingly, in most cases typing their own thoughts through the hands of the children with autism.

By 1995 there had been probably close to 100 court cases involving children making allegations against their parents through facilitated communication. In almost all of these cases, it was eventually demonstrated that it was the facilitator answering the questions and not the child with autism. Most of the court cases were dismissed. Sadly and unfortunately the damage was already done as you can see by watching this set of videos. By 1994 there had been a number position statements placed out there by reputable organizations, The American Psychological Association, the American Academy of Child and Adolescent Psychiatry, the American Academy of Pediatrics and the American Speech Language and Hearing Association, all stating that they could not support the use of facilitating communication and that the scientific evidence demonstrated that it did not work.

You have to ask yourself after all this time and all this evidence showing it doesn’t work and all this damage done to so many families, why here in 2012 is it still around. Why are families still being led down the path which will eventually, for many of them, lead heartbreak.  It’s because we ignore science. We let history repeat itself and we don’t learn from our mistakes. I think it is really a tragedy that I have to watch this video of things that I thought were no longer around and that families no longer had to go through. Several years ago there was an article in People Magazine talking about the wonders of facilitate communication.  I wrote a letter to the editor which was published simply stating that there was evidence showing it didn’t work and discussing some of the harm that came out of it back in the 90’s.

Sadly after that letter to the editor I got hate mail. I actually got mail from people telling me that I was vicious and mean. That’s what happens when you try to stand up for science. You can’t blame parents of children with autism. When somebody tells them they can reach the inner mind of their child who has never been able to communicate of course they would do it. I would do it. You can blame is the professional community. We are responsible and obligated to follow science. In education it’s required by law that we use evidence-based practice. So to me when there’s so much evidence demonstrating that facilitated communication doesn’t work and when it’s being used in school program, in my humble opinion, those professionals are breaking the law.

As a speech language pathologist I think the most disturbing thing to me about facilitated communication is that you take away the most fundamental right of free and independent communication from the individual with autism.  I understand that many of these individuals are nonverbal but that doesn’t mean that they don’t have thoughts and wishes and desires that they would like to communicate. Sadly, all they’re allowed to do is communicate when somebody’s holding their hand. And, most likely, not even their own thought or wishes. That is really the tragedy of facilitated communication.

Joanne Gerenser, Ph.D., CCC-SLP.
Executive Director

[hr]

In response to “Miracle or Nightmare?,” originally aired on ABC News.