Note: Thank you to Bruce for this raw post, written from experience as only a parent can write. We are all facilitators for our children with autism. In some fashion. This post delves deep into the use of Facilitated Communication. KIM
By Bruce Dalziel
My dear wife Mary still has dreams in which suddenly Matthew speaks. She dreams she is somewhere ahead of him-- perhaps driving a car with him in the back seat, or with her back turned towards his at a family party-- when he speaks a complete sentence, with perfect diction, such as “I always prefer that we drive this way as opposed to the highway.” In the dream, Mary asks, “Who said that?” and Matt says “I did,” or someone says “Matt did;” Mary is the only one in this dream who did not know Matt could talk.
This dream has precedents in our lives-- when Matt was 2 ½ he said “no” quite clearly to his grandmother, and that same month he said the word “bubble” perfectly at a birthday party. Today at 30, Matt has a good heart, a strong mind, and a wide vocabulary, and he is able to type to communicate basic needs, but he has not actually spoken again since.
When Matthew was diagnosed at age three, in 1990, autism was only beginning to be understood as a developmental disability. Its incidence has increased fifty-fold since. Doctors could tell us Matt was autistic, but not why. We found ourselves unlikely pioneers on an unexpected frontier. No one could tell us what caused it. Autism is defined in terms of symptomatic behaviors, including impaired communication and social skills, with no single identified cause, despite lots of theories. Yet the mystery gave us some hope that the secret of the tomb could be discovered, and that Matt’s disability somehow could be cured. Like cancer patients chasing clinical trials, for Mary and me at that time, it was that or die trying.
Before Matt was diagnosed, like most Americans, we knew little more about autism than what we learned from Dustin Hoffman’s portrayal of the precocious character Raymond in Rain Man, which premiered just after Matt was born. That is to say, we viewed autism as a curiosity, like Outsider Art. The Who’s rock opera Tommy presented a darker view: Tommy falls into a catatonic autistic-like state because of extreme childhood trauma linked to his mother, reflecting outdated 1950’s psychological theory suggesting autism is caused by “refrigerator mothers”, who are somehow unable to love their children.
In our house, this was always a laughable premise. Mary is all love all the time, especially for her dear boy and his younger sister Suzanne. Indeed, Mary literally taught Matt to love. It was like a D-Day assault, or maybe the Macarthur plan is a better metaphor. I am not sure I can describe it more precisely than as a singularly intimate focus or as a supernatural force. We had both read a memoir called “The Siege” by Clara Claiborne Park, a mother of a child with autism, who took an aggressive behavioral approach to breaking through to her child. Like Joan of Arc, Mary took up the sword.
Matt’s view of the world was distorted and enormously frustrating. Mary stood right in front of him, offering her full presence at every moment, and absorbing his pain. She nursed him for sixteen months, which was his only consolation at the time, since he did not suck his thumb and he had no use for toys or stuffed animals that might comfort other children. They developed a deep connection.
Mary taught him how to give a hug, and that other people sometimes needed hugs. She was constantly explaining other people’s behavior to him, especially emotions: “Suzy is crying because she is sad. She is sad because her game got knocked over. Can you give Suzy a hug?” Though Matt is still autistic, over a long period of time, Mary’s approach was wildly successful in building his empathy and self-confidence.
Mothers of children with autism have a heroic creative fire. They will try anything to make life better for their children, and they develop their own deeply informed prescription for what needs to be done to meet the needs of one singular individual, who is different even from all others with autism. These mothers are willing to change family diets radically, wrangle with insurance companies, bully school boards, restructure their family dynamics, move to other school districts or other states if necessary, all to facilitate this relentless quest.
Beyond Mary, there was no one in the world that was a better friend and advocate for Matt than his sister Suzanne. Two years his junior, she had to grow up quickly to become the big sister he needed. She also needed time of her own with us, which could be interrupted at any moment. She loved to play games involving stories and imagination. She made up a game she would make us play again and again. “Let’s pretend I was a baby and you did not know I could talk,” she would say. The plot then might vary a bit, but it always started with cooing and gurgling, and ended with our dramatic wonder and joy that this beautiful little baby had been hiding the fact that she could talk all along.
Most people were kind to our dysfunctional family. Sometimes though, we got the sense that some people believed we harried caregivers were perhaps part of the problem. We endured lectures from relatives and strangers about proper parenting. While some might offer great advice for modern families, our situation was post-modern, nearly bursting with ironic twists and practical relativism. We were saddened by a diminishment of some friendships, as some parents decided that Matthew’s challenges were more than their healthy families could bear.
A study in the 1990s found that, as a group, relative to other parents, parents of kids with autism were “anxious, impulsive, aloof, shy, over-sensitive, irritable and eccentric”. Fair enough, I suppose, but I am not sure we were unusual in any of these regards before we had children with autism. Maybe that’s what happens when everyday is a vigilance test to keep your beloved child from running out into traffic, and every night you lie in bed wide awake, worrying that he well might sneak downstairs to try to cook, turn the gas stove on, and burn the house down.
It was very difficult to get information about autism at that time. It was thought to be rare and had not been nearly as extensively studied as it would soon come to be. The internet was just getting started really, and there were virtually no on-line resources for parents of children with autism. Life was too hectic to travel to obscure academic symposia, hoping some professor’s presentation might provide a clue. We attended as many parent education seminars as we could to understand our son’s disability, but really it remained one big mystery at that time.
We met other similarly grieving parents, and bonded, primarily on the basis that none of us wanted to be in this position, and we would do anything to change it. This was our new tribe. It was here that we met the Gastons, Eileen and Rick, both whip-smart, ambitious attorneys approximately our age, and their sons Andrew and Danny. Andrew was Matt’s age, and was diagnosed at about the same time. We became close friends quickly, sharing hopes and frustrations, as well as information on emerging therapies.
In 1992 we became aware of exciting research by Douglas Bicklin and his associates at the University of Syracuse. They were getting remarkable results with a technique developed in Australia in the 1970s called Facilitated Communication (FC). In FC, a trained person called a “facilitator” lightly holds the hand, wrist, or elbow of a non-verbal person typing on a keyboard. Rather than pushing, the facilitator’s hand is to remain a neutral force on the hand of the communicator, or even pulling it back just a bit to allow the communicator to retain control. The premise is that this passive support of out-of-control gross motor skills can enable people with cognitive disabilities, especially autism, to access and demonstrate previously undetected literacy and numerical skills. Autistic people seemed to be constantly cutting through a clutter of sensory overload, so intuitively this made sense to us: if we could just control the neurological static, clearer signals might emerge and be heard.
Matt’s disability did not diminish his intellect, and he taught himself to read very young. He loved numbers and letters. He especially loved children’s dictionaries, with their colorful pictures of each word in alphabetical order. He would write in these books, first tracing over each printed word, then writing the word underneath the printed text, then writing all of the words on the inside cover of the book. He very quickly picked up on the value of using a picture board to communicate basic needs, starting with a picture of French fries. Over time those picture boards became pictures of keypads on paper, on which Matt “typed” out requests, without facilitation. He learned rudimentary sign language as well, even inventing a few of his own, such as a move like a baseball umpire’s call of “Safe”, which he used to announce that he was “done” with whatever task he was assigned. He used this sign often. Matt’s non-verbal communication skills were strong relative to his peers, and we were convinced that they might be an advantage in learning FC.
Doug Bicklin’s team was based at The Syracuse University Facilitated Communication Institute, where business was booming. When we learned there was a substantial waiting list, we begged for a priority appointment on the basis that Matthew was an ideal candidate: they did not need to teach him to type; he typed independently already! We were beyond excited when the admissions counselor agreed.
Set in a beautiful campus environment, the newly built institute was a vibrant center of cutting edge FC research, and more recently had become a Mecca for FC training. Demand for hands-on seminars was so robust that the sessions needed to be held in the ballroom of a hotel in town. After an initial lecture, we were assigned an enthusiastic FC trained graduate student to help train all three of us.
“Tell me about this book,” she asked Matt, placing her hand gently on his wrist. He did not want to do it and tried to leave his chair several times. Finally, the facilitator was able to hold him more firmly, and she showed Matt a picture in the book, and asked him to describe it. As the facilitator supported his arm, he miraculously typed:
The Mouse is on the shelf.
The mouse is holding wood.
Amazed, I switched places with the Facilitator, excited for my training to begin. I sat right next to Matt, cradling his forearm gently in the palm of my hand. “What’s in this picture Matt?” I asked. Matt looked at the picture briefly, then around the room, patiently, as if inspecting the building, perhaps surveying the quality of the ceiling construction, as his arm hung mid-air. Nothing happened. Then Mary tried and she failed too. But we were undeterred-- it was only our first day of training-- this was a practiced skill one could not expect to gain overnight.
Matt’ speech teacher Louisa also went to Syracuse, and came back to teach her Speech Therapy students FC. Imagine our delight when, in response to three pictures, Louisa reported that Matt typed the following sentences “by himself answering my questions”, using the FC technique.
Frog is wearing a hat. The Frog is green.
It is a bag for candy. The bag is for Halloween.
Mouse. The mouse is wearing a hat and a mask.
This was a very exciting day! Louisa was making progress with many of Matt’s classmates as well. Matt’s friend Andrew was the real star of her FC efforts. Louisa, Rick and Eileen were all able to facilitate with Andrew extremely well. After Matt spent a rare night away from us at Andrew’s house, Louisa facilitated a note from Andrew that read:
Tuesday 5/23/93 I had a good day today. I was calm all day. I told Mojo Matt that I had fun with him on Sunday at the Hotel Gaston. He told (SMELL MINT. I HAVE TO STOP.) me he had fun too. I know he made my day. I’m so happy to have a friend! It’s a Monotoning. It’s good for me. I’m so lucky! I’m tired now. The End!
Andrew was only five years old, but “monotoning” seemed a perfectly invented word to help the world understand his needs in managing sensory overload. It seemed he was breaking through a barrier of crippling sensory chaos to a quieter place where he could communicate. We started to think of him as a gifted young man. A medium whom Eileen consulted told her that Andrew had psychic powers which would be revealed over time.
Eileen scrapbooked every note Andrew wrote. Much of what he reported was about sensation, and they used this tool to learn about him. Mary and I scratched our heads a bit sometimes though, as when five year old Andrew told Eileen that he liked her black stockings because they looked “whory”. Matt had a pink glove fetish himself, sometimes insisting women put them on, but he had no vocabulary for it. Where would Andrew have learned that word? Another parent friend of ours discovered that her formerly non-verbal six-year-old son typed perfectly in Italian, just like his mother. The apparently studious young man explained, through FC, that he had found her college text books in the basement, and had read them cover-to-cover.
Mary and I were also a bit crestfallen that Matt would not communicate with us through FC. I am his best friend on the planet, Mary thought. Why won’t he talk to me? Other parents were having similar experiences of success at school but none at home. Matthew, who started out strong when the game was new, was increasingly disinterested. He wanted to play with the keyboard, preferably by himself. He started to get angry with Louisa for continuing the game. To her credit, it was Louisa who told us that she did not think Matt was taking to FC, that the struggles were exceeding the value of the communication, and that she was no longer doing FC with all of her students. For the students for whom the techniques appeared to be working, she continued to facilitate. I think she viewed it as genuine communication.
In the wake of our own disappointing results, skeptical articles we ran across, the “whory” stockings, and the Italian-speaking savant, we began to have serious doubts. These doubts were largely supported by a 1993 PBS Frontline feature called “Prisoners of Silence,” which questioned FC and emerging sexual abuse claims gathered through the technique.
But this contrary evidence was viewed with deep suspicion by many of us, because miracles seemed to be happening all around us every day. I myself recall distinctly watching Rick facilitate a conversation with Andrew in a McDonalds when Andrew was having a complete meltdown. Rick was right in his face in a good way and I must say that they did in fact communicate somehow, and that Andrew was calmer and better off for it. Perhaps this ritual of listening and acceptance worked well for them whether it was based on fact or not. In any case, at that time, I did not think it would be wise or kind to contradict people reporting positive results; no sour grapes for our dear friends based on our own disappointment.
That changed when Louisa was promoted to be Principal for Matt’s school, and she decided to form a men’s support group for fathers of children in her program. It was exciting at first for me to think that perhaps after a few meetings we could maybe just hang out and talk about other stuff, to get away from all the tension at home with other men who would truly understand and appreciate that luxury. What I had not considered was that the group would include just two seasoned Dads-- me and Rick-- plus four other Dads who were new to the game with fresh diagnoses, and many unanswerable questions. They needed all the help and advice we could give them, so the floor was given to me and Rick.
I went first, but I don’t really remember what I said. I probably recommended finding physical activities to do together which did not require a lot of communicating. I may have talked about the importance of respite with your wife in preserving marriage, and giving time to other siblings. I most likely encouraged these young fathers to include their autistic child in all of life’s activities, even though it was incredibly difficult and stressful. But I was not really listening to what I was saying, because as I was talking, I had a clear premonition of what would happen next.
It was Rick’s turn. I squirmed as he told the tale of how FC had changed Andrew’s life, that underneath his autism he was in fact gifted in both language and math. The other dads leaned forward, hanging on his every word. This was the miracle they all wanted to hear, the one for which they had literally prayed.
There is indeed valor in discretion. Were I little bit kinder to my friend, or wiser perhaps, I might have kept my doubts to myself at this moment, or saved them for a separate discussion. But as I looked around at my fellow unfortunates, I could not let them go through the emotional rollercoaster of a miracle dream doomed to be dashed. I felt compelled to tell the truth, or at least the truth as I knew it.
I let Rick finish without interrupting him. It was quiet for a moment. Then, almost in a whisper, without looking up, I mumbled, “but there is some controversy about it,” and hoped to leave it at that.
Louisa looked up at me, startled, but said nothing. Did she have her own doubts at his point? I am not sure, but she must have known by then it was controversial. It seemed like a century before anyone said anything, and there was a palpable sense of danger in the air. Then Rick cleared his throat, looked me in the eye, and asked earnestly, “What do you mean?”
I stuttered, then mumbled that skepticism about the technique was becoming widespread in academia (Yes I said academia—ugh, this was no time to be high brow). I said that Mary’s and my experiences and those of other parents were confusing as well. Rick became more pointed. “Are you saying that you do not believe in Facilitated Communication?”
“I don’t know,” I stammered, a lie by then. “It’s probably a good way to teach typing, but some studies suggest a kind of Ouija Board effect”. I immediately regretted the metaphor of this banal parlor game; its plastic planchette guided by imagined spirits; not wrong as a comparison perhaps, but unkind and poorly timed.
He looked shocked, staring at a space just above my head, as he processed it all. “If you don’t believe in Facilitated Communication, then you don’t believe Andrew can…” His voice trailed off, as a blush of hatred rose, or was it just grave disappointment, and silently abated, like a cloud rolling over a friendship on a vast prairie, blown away in thin trails of gray vapor, forever, gone.
Soon thereafter Matt changed schools and we did not see the Gastons after that. In his early 20’s, Andrew became famous as an Outsider Artist working in plastic tape, stencils, and Lego. His work is colorful and was well reviewed. His Mom provided the facilitation he needed to become an artist, gathering his materials and publicizing his work online and in gallery shows, but Andrew created the work.
One of the reviews incidentally revealed that Andrew has a vocabulary of less than 50 words, so apparently the Gastons had their own realization about FC by and by.
Do I feel in anyway good about that—about being quicker than some others to detect the illusion of FC? No. I lost. Mary lost. Matt lost. Andrew lost. Louisa lost. Rick and Eileen lost. We all lost. Our son, and all of our sons, were briefly someone else underneath who they are, someone else they could be, someone more average, or even better than average. Then, again, they were not, just like Flowers for Algernon.
But to keep it in perspective, we only lost a dream and some friends; we still had our lives and dignity. Around this same time, a sixteen-year-old autistic girl, Betsy Wheaton, produced lurid allegations of sexual abuse against her father and brother through FC with a trained Facilitator, Janyce Boynton, for which they were arrested and tried, humiliating the family. The press followed the lurid details closely, bringing the kind of public outrage one would expect, given the horrendous allegations.
For the trial, Speech Pathologist and FC skeptic Howard Shane developed a simple efficacy test. In a series of double-blind trials, Janyce and Betsy viewed pictures of objects independently. In some of the trials they viewed the same object, while in other trials they viewed different objects. Jayce was asked to facilitate with Betsy to identify the objects they were seeing. When they viewed the same object, the facilitation seemed to work- Betsy seemed to identify them correctly. But when they viewed different objects, the facilitation invariably produced what Janyce had seen, not what Betsy had seen. Janyce was unwittingly controlling Betsy’s typing with her facilitating touch, as she had done when the allegations had been produced. The case was dismissed. Janyce herself was devastated by these results and her revealed delusion. She apologized to the family, later working to remove FC from the school system where she lived.
There were a host of similar FC sexual abuse claims from the early 1990s through the later 2000’s. Shane’s efficacy test was used in many of these cases to discredit the technique. In 1994, the American Psychological Association declared FC an “unproved communicative procedure with no known demonstrated support for its efficacy”. James Randi, renowned skeptic and scientist, calls FC “cognitive bias at work—a textbook example”
Yet FC persists, still used by trained speech therapists in many schools across America. Some hold-out advocates stress the importance of proper technique, while others see using the scientific method to search for verifiable truth itself as demeaning to participants, who must endure the mantle of bigoted outsiders’ doubts, potentially violating their civil rights. In 2014, a pharmaceutical executive was convicted of manslaughter for her role in killing her eight-year-old autistic son, after he communicated to her via FC “I need lot of drugs to die peacefully… I wish u do it soon”.
We are no longer shocked that people cling to bad science. And there is no sin in being deceived, only sadness. The most serious errors made in FC were in refusing to let go of an illusion, as unfortunately some still do today. All of us—family, friends, teachers, and therapists,-- try to “facilitate” the lives of the disabled people we care for as best we can. If there is a lesson, perhaps it is only that we parents of kids with autism need to hold on tightly to our skepticism, to channel our “anxious, impulsive, aloof, shy, over-sensitive, irritable, and eccentric” natures, to demand scientific verification, especially when it is most difficult, when we so, so, much want to dream and believe.
Bruce Dalziel is a former finance and technology executive, who is currently pursuing a doctoral degree in Arts and Letters at Drew University. Bruce also serves on the board of Our House Inc., a housing and day program provider, and on the investment committee of PlanNJ, a service and trust provider, to people with disabilities.