Sepia, Autism, and Facilitated Communication

Research.  My son wanted to know why I was doing research yesterday—after I had finished my first draft of Sepia.  I explained that, while I had done some research as I was writing, and while I already had some experience with the topic, now I was working to be as well-versed as possible on my subject, to be sure that I do not misrepresent my characters or have them act in ways that are not true to reality as I make my first revision.

What are you researching? he wanted to know.

Autism.  Autism and facilitated communication.

I have had experience working with children who are autistic.  My first internship in college was with a preschool program for children with special needs, and while I did research and compiled a database of resources on siblings of children with special needs, I also spent my days working in the preschool and focusing on a bright autistic boy who communicated with gestures and echolalia.  Working with D. gave me a lot to think about.  Here was a child whose potential was locked up by his behaviors, by his way of relating to the world and to others, by his difficulty communicating.  I wondered what it must be like for his siblings, knowing how much he was capable of, and yet seeing how poorly he functioned in this world.

Later experiences in my work gave me more to think about.  A little boy who communicated in song; a little girl who did not speak at all, but hummed and smiled and took you by the arm to tell you what she wanted.  A glimpse was all we had of their potential.

I began writing Sepia just weeks after my brother passed away.  I needed to explore the relationship of a character with her special-needs brother, but I did not want the main character to be me, and I did not want her brother to be Bobby.  I was writing fantasy, not memoir. I was exploring relationships in a universal way, although I specifically wanted to explore the typical sib/disabled sibling relationship.  So I chose to make Cara’s brother autistic.

Now that I am reading about facilitated communication, and reading the works of autistic adults who were believed to be mentally retarded but are now able, through facilitated communication, to write of their experiences quite eloquently, I am especially glad that I chose an autistic boy as one of my main characters.  There is so much that is misunderstood about this condition, and there is such a universal need to be known which applies to all human beings, that I think I can do justice to one of the themes of my work with this particular set of characters.  All human beings deserve to be known and recognized as individuals; everyone has something unique to offer the world.  Facilitated communication has given many disabled individuals an opportunity to say this for themselves.  We need to listen to them.

Facilitated communication is a controversial method which involves the support of a non-disabled “facilitator” to assist while a communication-impaired individual learns to point or type at a keyboard.  At first, the facilitator supports the hand or arm of the disabled individual, and this appears to be the most controversial part of the process.  Critics say that the facilitators are guiding the subject to say what the facilitator actually (but subconsciously) wants them to say—like operating a Ouija board.  Critics say that it is the facilitator’s thoughts that appear on the keyboard screen, not the subject’s.  Certainly, this is possible and may be quite common.

But, clearly, there are instances in which the subjects do learn to communicate and type on their own, with only the gentle pressure of a facilitator’s hand on their shoulder, or the spoken reminder of what the subject had just typed and a little “nudge” to keep going and finish what they were trying to say.  Some autistic individuals who use FC (facilitated communication) write of their need to have emotional support as they write, to keep them physically grounded and to help them focus. While FC remains controversial, there is, at least, a small set of individuals who have gone on to become independent typists who are now able to communicate freely with the world.  And how much they have to say about the world, about individuality, about the universal need to be recognized, to be known as a person!  FC was a way to open doors for these individuals which may never have been opened otherwise.

Reading their words supports and validates so much of what I want to communicate about special needs through my story. Cara had always believed in Mickey’s potential, and the opportunity for her to communicate and interact with him easily in Sepia will have repercussions for both characters in the sequels.  I hope that Mickey will have an even greater role in the next book, advocating for himself and others while learning how to handle the challenges of being autistic. 

I can’t wait to do more research, to learn more from the amazing individuals with autism who are advocating for the disabled.  On my list of books/movies/blogs which I need to read and watch:

“Reflections on Language,” by Lucy Blackman  in “Autism and the Myth of the Person Alone” by Douglas Biklen

Lucy's Story: Autism and Other Adventures by Lucy Blackman.

Wretches and Jabberers (movie—Amazon)

info written by and about the following individuals: 

Sue Rubin, Chammi Rajapatarina, Tracy Thresher, Larry Bissonette

I am in their debt, as is the world.  Thank you for opening our eyes.