Facilitated Communication

Just found this response that I wrote in response to a group of naysayers who were basing their arguments against FC on "scientific evidence". Thought I would share it here.

Why I Support the Use of Facilitated Communication

By Gail Gillingham Wylie, MSc

In 1988 I met my first friends on the autism spectrum when I was hired to work as a group home supervisor and I have been on an absolute incredible journey with them ever since. In the beginning I faced the total frustration of working with people whose behaviour did not make any sense to me, the recognition that very little I was doing was helpful and that what my superiors were suggesting was actually making things worse. I witnessed abuse of these people in the first week on that job and spent the next nine months fighting against that abuse and speaking out about it, in hopes that it would stop. I was fired for my efforts. At that time I thought that this would be the end of my connection with these people but it was not to be. For they are my people. People I love in way I never thought possible. People who have taken my whole life over and it is good.

I went into the world to find of methods of treatment for autism to bring back to our province so that we could close down the abusive organization and give these people what they needed. There wasn't much available that made sense back in 1988. I started to collect the words of those who have autism in order to figure out what works for them after Rainman came out and I heard Temple Grandin speak about the sensory problems that she experienced as a child. There was little to go on at that time, but I pieced it together with articles, case studies, letters, research studies, presentations and so on from throughout the world. Every one of these people spoke or wrote of how their sensory systems were overwhelmed. I developed a method of care based on reducing sensory input. We saw an immediate change in those who were nonverbal: those who couldn't tell us what they needed or what they were bothered by when we reduced the amount of sensory input they had to endure in the environments in which they were living.

I was absolutely delighted in the early 1990's when facilitated communication was first made popular in America. Finally we were hearing the words of those on the extreme edge of this condition. And they were telling us that their sensory systems are even more overwhelming to them than the information I had gathered from those who are able to speak. I believed in FC as soon as I read and heard those passages. Why? Because it wasn't a topic that people were talking openly about. There wasn't any information on the impact of the sensory system available to parents or to professionals at that time. It wasn't something that the facilitators would know to type. So the message had to be coming from the person with autism.

It's 2006 and we all know that the sensory system plays a huge role in autism..... some of us with a far better understanding than others but, it is difficult to find anyone who doesn't understand that there is a connection between autism and the sensory system. It's in the articles. It's on TV. There are hundreds and perhaps thousands of books out there that speak of it. This wasn't true in 1990. The words they typed were coming directly from their experience and they were eager to share the reality of their lives with us. We didn't learn everything about the sensory system and autism from those who use FC, but they did add significantly to our knowledge base.

I have witnessed the paranoia and fear of FC throughout this time and I am absolutely amazed at the passion of people who want to take away the voice of those on the spectrum. I sit back and watch and wonder what is wrong with this world. Who is actually disabled? I was fully aware of what was going on in the early nineties when scientists were frantically designing stupid research studies to prove that it does not work. I recognized where their fear came from. They were desperately protecting their own credibility because there was no way anyone would support most of the "treatments and therapies" used in this field if these people were as intelligent as FC was indicating. How can one give up a belief and one's life work based on the mental retardation myth? One has to stop these people or everyone will know what fools they have been all these years and what destruction they have done. It's the people who have no connection at all with it who amaze me at this time. Where's this great need to support invalid scientific research coming from?

Those who lived in fear of ruining their own reputations succeeded for a time. But the truth will always be set free. It hurts to think of all the wasted years that have happened since the early nineties. It hurts to think of the lives spent in silent desperation. It hurts to see people as they really are: not those on the spectrum but the normal people who speak out with such authority having absolutely no idea of what they speak of.

In the midst of this there are those who brave enough to shut out the opinion of world and to continue on supporting their family members and friends with FC. There are those who have put their careers on hold in order to ensure that the people they love continue to have access to communication in this way. And because of them, we have continued to learn so much. I thank them with my whole heart. I have had hundreds of conversations with people on the spectrum using FC and I am not fooled. I can tell you when the person who is facilitating is putting words in the person's mouth and I can tell you when the conversation is coming directly from the person who has autism. There are hundreds of ways to test it if you are willing to make the time and effort.

I have gotten to know these people at a level that few of you who have responded to this article will ever have a chance to, because you are not willing to step out of your little box, based on your own reality. FC is not an easy method of communication. It takes a level of trust, of acceptance, of dedication and of time that nothing else does. When I look at the whole picture of humanity I see it as one of the greatest gifts that we can offer another human being. I stand in awe of those who have persevered. Because of them TIME magazine has the guts to speak about this subject again in public. Because of them more and more people will be offered a voice. Because of them, some who began with FC now type independently and others have started to speak. The greatest test of FC is that when this happens; does the message change when they are independent...... it doesn't.

Be very, very careful with the words you are sharing with the world unless you have personal experience. When it comes to FC this means that you must experience it first hand, through conversations with those who are using it, and by trying to do it yourself. You must put yourself in a crowd of people and watch the conversations flow with words, with letter boards, and with computers. You must take the time to sit and wait as the answer to your question is slowly and carefully typed out. If you can do this you will be blown away with what happens. If you don't.....you have absolutely no idea at all what you are talking about and the damage you are doing.

In 1993 the organization I first worked for was closed down by our provincial government because of the abuse. We had to go as far as the national news to bring that to a head. It took five years of my life to accomplish that. It's taking a much longer time with Facilitated Communication but it's not going to go away. It is much too powerful for that. Gail Gillingham Wylie, Author: Autism Handle with Care Autism A New Understanding and Sharing Our Wisdom
May 15, 2006 @ 10:50