I haven't got this figured out just yet. It's been over 22 years, and I still don't know how to best share the good news that people who don't speak are often in fact full of knowledge, ideas, creativity, and feelings just like the rest of us.
In the early days, it was easy. We invited anyone who might be interested to visit our classrooms and see for themselves what was happening. Sure, there were skeptics. It was a revolutionary change in our thinking and perfectly natural that some were more reluctant than others to see these kids in a completely new light. For the most part, it was the kids themselves who helped bring about the shift in most of our visitors. If one of our young students would allow a new person to take their hand, and then point to letters on a letterboard, what they had to say almost always brought about astonishment, excitement, and cries such as "This changes everything!"
But of course it didn't really change everything. These same kids still needed lots of help and support in virtually all aspects of daily living. They still got frustrated and acted out, and they still did lots of things that parents and teachers wished they wouldn't do. As far as communication goes, they still couldn't speak in a way that matched what they typed, and they could only type when they were given physical support from a trusted facilitator.
Personally, I was ready to shout from the rooftops - it really was THAT exciting! My whole professional career was turned upside down, and my whole life was being affected. But it didn't last long. All too soon, the controversy took over and many supporters of Facilitated Communication (FC) lost heart, became discouraged and/or afraid, and called it quits. The rest of us became quiet, talking about our experiences only among each other or with family and friends who had remained supportive - we were comfortable only preaching to the choir. I lost my teaching job over the issue, but I used that down time to write a book about my experiences. With the book published but sales almost nonexistent, I started giving the book away to anyone who showed an interest. Not many did. I wondered if anyone was actually reading my book!
Then, after many years of silence, some stories began to emerge. Thanks to brave souls like Sue Rubin, Sharisa Kochmeister, Jamie Burke, Payton Goddard, Lucy Blackman, Larry Bissonnette, Tracy Thresher and others, videos were produced, books were written - and word got out ever so slowly to the general public that something really impressive was going on.
So, even more slowly, I ventured back into the water. I submitted proposals to autism conference program committees, I offered free presentations at local libraries, I toyed with ideas for training facilitators, just in case interest would return. Results have been mixed, at best.
A recent example: After a couple years of talking about it and making plans, I was invited to give a presentation at a locale just over four hours away (driving time). My husband drove along with me, and as we pulled into the parking lot of the hotel, we noticed immediately the monstrous sign in front announcing that an "autism speaker" would be there that evening. Ha! That would be ME! We snapped a picture to share with folks back home and went inside to be welcomed by the hotel staff, who graciously welcomed me as the person they were expecting. The two great women who had made all these arrangements took us out to dinner and we all returned to get ready for the presentation. A large coffee urn was ready to do, ice water and cookies were available and tables and chairs were set up to accommodate about 70 people. I hooked up my computer, booted up the PowerPoint slides, and waited.
As the announced starting time approached, it was all too evident I'd be talking to the two organizers, three family members of theirs, my dear hubby, and two surprise guests - childhood friends (with no connection at all to autism) who had read in the local paper that I was going to be speaking in their area. That was it! I went through the presentation as planned, struggling somewhat with a scratchy throat and voice (emotional reaction maybe?) and answered most of their questions. But I had no answer for the last question of the evening. "So, what can we do to help?"
I have been thinking about this ever since, and I have been thinking about the families I have met over the past 10 years or so with kids who have limited or no spoken language. Only a few of these families have even asked about FC for their children, and only one has ventured far enough to ask me to evaluate their particular child, their particular situation, to see if typing might help. In that case, it really DID help, but I can count about 10 other young people who could also benefit - all in very close proximity to where I live and work.
What is holding everyone back? Why are people so afraid? Why don't they want to hear more about this? What can I do to help???????
