A few weeks ago, I encountered something that surprised me: a full-length documentary about profound autism. Even though it came out in 2023, I’d somehow never heard of it—and neither had any of my autism cronies. Furthermore, from its initial scenes all the way to its ending, it lived up to its promise as a realistic portrayal of the trials of life with profound autism. It was, in other words, a huge departure from the facilitated communication and Telepathy miracle documentaries (Spellers; The Telepathy Tapes) that have dominated the electromagnet spectrum at least since 2023. Entitled “Beyond”, directed by Thiago Dadatt, and posted a year ago on YouTube as BEYOND (Feature-length documentary film about severe autism), (it currently has 223K views), it showcases Tamara Mark, a professional dancer and voiceover artist who is a single parent to two profoundly autistic non-speakers, Ian and Harry, currently in their early twenties.
Beyond opens with
the sounds of strident violins and a montage of Mark and her two sons, who,
highly excitable and often distressed, seem to be in constant motion. The first
scene is Thanksgiving, 2020, at Mark’s home in Pasadena, California. Mark is
alternating between preparing dinner, speaking with the documentary team, and
following after one or the other of her sons in response to their cries of distress.
We learn that the state-funded, in-home support she gets falls far short of
what she needs and that she pays out of pocket for more. We learn that Harry
was in a residential placement but had come home at the start of the Pandemic.
We hear about sibling strife, self-injurious behaviors, and seizures; about
Mark’s isolation and sleep deprivation (“Three hours a day, if I’m lucky”);
about the three-year-long waitlist for residential placements in California;
and about the many people she knows across the country in similar situations,
some of them “being injured by their kid” or seeing their kids die after being
placed in a home. Finally, Mark sits down to dinner all by herself at the
table, takes a short breather, and wishes the cameraman, in a combination of
wistfulness and irony, a “Happy Thanksgiving.”
The film then flashes back to Mark’s career as a dancer.
While it continued to play in the background, I started multitasking. I
listened with half an ear as the film turned back to Mark’s sons Ian and Harry,
their births, their symptoms and diagnoses, the emotional roller coaster, the
challenging behaviors, the seizures, the urge to fix things. Then came the
litany of therapies—chelation, Chinese herbs, chiropractic therapy, holistic
and holographic healing, John of God healing, Son-Rise, equestrian therapy,
dolphin therapy, and occupational therapy—some of which were new to me. I began
listening out for any mention of FC, but wasn’t really expecting it: there had
been no letterboards in sight during those Thanksgiving scenes. The boys
communicated entirely through vocalizations and body language, and Mark
communicated with them only through bodily contact, body language, and simple
phrases (“What is it?”; ”It’s alright;” You’re all right.”). In other words,
authentic, independent, un-facilitated communication.
But then suddenly, at around the 30-minute mark, my
attention is yanked back by a telltale word: “typing.” Someone is
reporting on how Harry had been typing during a lesson about dolphins. I
abruptly close several windows that were occluding the video, and there before
my eyes, debriefing with Mark, is none other than Darlene Hanson. Identified
here as “long time Ian and Mark’s speech & language pathologist,” Hanson’s
actual specialty is facilitated communication. Considered a master facilitator,
she’s been facilitating since the early 1990s. Her clients include Sue Rubin of
Autism is a World,
Peyton Goddard of I am Intelligent,
and Emily Grodin of I have Been Buried Under Years of
Dust. Hanson is also the second author of the Cardinal et al.
study that Janyce has been blogging about (starting here).
But even though Beyond, as it
turns out, includes FC, it still distinguishes itself. Unlike Autism is a World, I am Intelligent, I have Been Buried Under Years of Dust—and
unlike the movie Spellers and
countless other accounts of FC—Beyond presents
FC as just another rather unremarkable part of life with profound autism. There
are no breakthrough moments, no revelations of unexpected intelligence, no
moves away from life skills and immediate needs towards academics or poetry
writing or FC advocacy or any of the other motions that non-speaking autistics
are routinely put through after they start being FCed.
Rather, in response to Hanson’s report about Harry’s
interest in the dolphins lesson, Mark’s reaction is simply to emphasize that
“Communication is all that I ever wanted” and that “I should be doing this
every day.” Hanson’s response is telling:
Yeah, it’s going to be a dance, you know, because you don’t know what days it’s going to be a good day. So you can’t schedule me to come over on Tuesdays at 10. Because Harry doesn’t follow that schedule.
Facilitated communication, so much more elusive and
tentative than in other accounts, depends here on Harry’s mood and Hanson’s
availability.
The FC scene that follows the debrief comes across as a
relatively unremarkable clip from an established routine. It begins with Hanson
approaching Harry as he makes distressed vocalizations. Hanson takes his hand
and says “You are upset about something... Can you say Hi?...” There is a
pause.
Hanson: “Hi, Harry. Good to see ya. Want to say
something?”
She holds up a colorful letterboard, puts her hand on his
arm just above his elbow and the typing begins.
Hanson: “Beautiful, Keep your rhythm. We should fir—first“
The letters “WE SHOULD FIRST” appear on the screen,
ostensibly as a transcript of what Harry just typed. (The letterboard moves a
lot and it’s hard to see which letters are actually selected.)
Hanson: “Mm hmm. We should first...”
The letters “TYPE ABOUT” appear on the screen.
Hanson: “About what? What should we type about?...”
Harry moves away and makes noises.
Hanson: “Oh! Something important. Sounds like it’s
something important. Feel free to share it.”
Harry thrusts a hand out and in as if repeatedly throwing
something.
Hanson: “Go over here? You want me to go over here? Like
this?”
Hanson moves away from Harry. Harry makes a vocalization
that sounds kind of like “more.” “More?” Hanson moves further away.
Hanson: “Alright, so think about what you’re going to tell
me that we should really type about.”
Harry is now sitting down in a chair, facing away from
Hanson. She approaches him.
Hanson: “I’m going to come over and see if you want to
finish that thought. Ok, buddy?”
The scene cuts to Hanson once again holding the letterboard
in front of Harry, her hand back on his arm.
Hanson: “To what? V-e-r- Very? T-i-r Very tired... Of... “
The words VERY TIRED OF appear on the screen. Harry makes a
vocalization and pulls his arm away from the letterboard.
Hanson: “Very tired of? You think you can finish it? ... Do
you want me to leave? Would you finish this and then I’ll leave.” (She puts her
hand on his shoulder) “How about that? Can you try?”
I find it quite telling the incentive to finish the FC
session is the facilitator’s departure.
Hanson puts her hand on his shoulder and adds, “I really
want to know what you’re tired of, buddy.”
Harry makes a short vocalization.
Hanson: “Okay! Can you tell me and then I’ll go?”
She takes his hand.
Hanson: “Try, try, try. Very tired of what?”
She has her hand back on his shoulder and moves the
letterboard around.
Hanson: “b-e-I, being... i- n, in... p-a-i... Very tired of
being in pain.”
Bit by bit, the message VERY TIRED OF BEING IN PAIN has
been appearing on the screen.
Hanson: “Pain. There you go. Now I can go because you hit
that period. Thanks.”
Hanson says those words with enthusiasm. She then pulls the
letterboard away and gets up. A moment passes before she expresses any
sympathy.
Hanson: “I can only imagine, Harry. When I’m in pain. Man.
That’s rough. It does--you just like, you want it to stop, huh?... I get that.
I’m sorry. I know your mom is working on that.”
(It is eventually decided that Harry is suffering from
tooth pain and needs dental surgery.)
Notably absent from these FCed messages is the dazzling
vocabulary—“amber,” “kale”, “constellation”—and poignant content—“I love you
Mom and Dad”, “I am intelligent”—of many initial FCed messages. To viewers who
know little about autism and language development, the messages attributed to
Harry may seem unremarkable—or at least not implausible. But implausible they
nonetheless are. Every single vocabulary word (“should,” “first,” “very,”
“tired,” “pain”), pronoun (“we,” “I”), function word (“about,” “of,” “in”), and
morphological inflection (“being”) are well beyond the receptive and expressive
vocabularies even of many individuals with somewhat less profound autism (i.e.,
those with two-word, telegraphic speech).
The next time FC comes up is much later in the movie, in
the context of Mark’s attempts to help set up a residential community for adult
non-speakers. Here the documentary provides captions about the scarcity and
long waiting lists for such programs. Mark needs collaborators, and she travels
to San Diego to meet with some other parents. But besides their shared interest
in setting up a community, it turns out they all have one other thing in
common.
Foreshadowing this shared commonality is the first parent
we see: Dawnmarie Gavin, described here as an S2C practitioner (Figuring
prominently in the Spellers Documentary, Gaivin will go on to rebrand S2C as
the Spellers Method). Like Mark, Gaivin is also a single mother of two
non-speaking sons with autism. Another couple also has two non-speaking,
S2C-using sons. We hear briefly about their experiences with “spelling” and how
one of their boys eventually earned a high school diploma. In fact, all of the
parents appear to have S2C-using kids.
Fleeting moments of S2C include Gaivin facilitating out the
word “birds” from one of her sons and then asking him “What else could we put
on this property?” The group is milling around some land they are considering
as a site for the adult community, and there has been some vague talk by the
parents about how their children will have input and play leadership roles. But
Gaivin’s son’s response to her question is to turn from the letterboard to his
brother and grab his hair. Gaivin calmly intervenes, asking the one brother to
“open your fingers” and then comforting the other brother, who is crying out in
pain, before returning to the first and facilitating out the word “sorry.”
There is no talk, even among these S2C believers, of unlocked genius, of
starting a Spellers Revolution, or of pursuing advanced degrees in creative
writing or neuroscience (to name a few paths taken by other S2Cers). Rather, the
discussions center on the logistics and fundraising required to ensure that
their children can live out their lives after they are no longer able to care
for them.
We have yet to see Mark’s older son, Ian, being
facilitated, but towards the end of the documentary Hanson reappears and makes
several failed attempts to do so. Ian eventually tosses the letterboard on the
ground, but Hanson picks it up later and after a jump cut, with Hanson’s arm on
his upper arm and shoulder, Ian has apparently typed out “This is stressful.”
He then appears to type out “being home” (we can’t see which letters are
actually selected). Hanson expresses sorrow and asks him if there’s anything
they can do to make him less stressed at home. Ian then allegedly types (we do
not see the process) “in my independent home.” Hanson infers that he wants to
live independently. Meanwhile, Ian has made it quite clear that he wants to
stop pointing to letters.
As for Mark, she has reconnected with a high school
boyfriend who lives in Australia. She takes her first trip away from the two
boys, leaving them for several weeks with a team of helpers. Indeed, we see
numerous helpers throughout the film: helpers, but not facilitators. Hanson, it
appears, is the only person who ever facilitates either of them (a couple of
additional moments of Hanson facilitating flash by towards the very end of the
movie). There is no evidence that Mark has ever facilitated her sons even once.
The documentary ends on a happy note, but it’s not thanks
to an FC miracle. Mark continues to communicate with her sons as before, in
simple phrases; the boys continue to communicate back to her in authentic
gestures and body language. But Mark has returned from her trip with her
boyfriend; he has decided to join the family; and the film’s final scenes are
on Thanksgiving of 2021, where Mark is no longer sitting alone at an empty
table. The closing captions tell us that Ian is working at a local plant
nursery and that Harry had his teeth fixed and is currently pain-free. As for
FC, it’s just one more routine event in life with profound autism; it itself
has solved nothing, and much of life appears to be continuing more or less as
before.
All this makes Beyond more
honest than all the other accounts I’ve seen that include FC. But it also makes
the FC more insidious. With no explicit introduction and no remarkable moments,
seamlessly incorporated into the rest of the documentary, FC appears as totally
normalized. This, of course, is also a testament to just how entrenched it’s
become. And even without the false revelations of intact genius and spiritual
gifts, and even with the continuation of authentic communication between parent
and children, FC still, inevitably, supplants authentic communications with
false ones. And, as we see in each FC session here, as elsewhere, holding still
and pointing to letters while someone hovers over them and holds their arm is
something that all the non-speakers clearly find aversive.
Shortly after watching this documentary, I had another set of surprises. Back when my son was first diagnosed, I read all the autism parent memoirs I could get my hands on. Among these were several refreshingly honest memoirs of profound autism: the three “Noah” books by Josh Greenfield and The Small Outsider by Joan Hartin Hundley, all of them published in the 1970s. There was also Craig Schulze’s When Snow Turns to Rain, published in 1993. The latter, in which a boy develops normally, even precociously, until his third year of life, is the most haunting and heart-wrenching of all. But several days ago I had reason to take it off the shelf and review some of its contents.
Like Beyond, When Snow Turns to Rain withholds
nothing about the trials of profound autism and the litany of quack treatments
(Fenfluramine, Naltrexone) and non-evidence-based therapies (vitamin therapy; Son-Rise)
that the parents, in their desperation, try out. In the end, they settle on the
program that seemed to best suit their son Jordan: the Boston
Higashi School and its “Daily Life Therapy.
A scene from the Higashi School, incidentally, bookends the
FC-debunking exposé Prisoners of Silence.
A foil to all the scenes elsewhere in the documentary of children being
facilitated, here are young children without facilitators hovering over them
and holding their arms over Canon Communicators. Instead they stand together in
rows as a teacher plays the piano and leads them in “If You’re Happy and You
Know It” and “He’s got the Whole World in Hands.” Some of the kids even sing
along. And when the scene resumes at the end of the documentary, the voiceover
says:
One day, the mysterious condition of autism will be understood and researchers may find a cure. Until then, as the evidence against facilitated communication accumulates, a painful question remains, whether parents and those who care deeply about autistic individuals are choosing to see them as they would like them to be, rather than respecting them for who they are.
One of the closing scenes of Prisoners of Silence: Profoundly autistic
children at the Boston Higashi School sing “He’s got the Whole World in his
Hands.”
As I finish my scan through When
Snow Turns to Rain, I find, just seven pages from the end, the
following passage:
Ten, twenty, maybe a hundred disconfirming experiences with treatments for this crazy disorder aren’t sufficient to kill the seed of hope within me. Just as there is for a weed sprouting through a crack in the pavement, there is always a light to reach for. Today, and for several months since I first learned of it in an article in The Harvard Education Review written by Syracuse University Professor of Education Douglas Biklen, “facilitated communication” has been the next flickering glimmer in the distance... (p. 210)
How had I forgotten about this section? Certainly, at the
time I first read it back in the late 1990s, I was under the impression that FC
had been so fully debunked that it was no longer in use. Was that why this
paragraph, and the ones that followed, had made no lasting impression on me?
I read on:
Jill and I have spoken about facilitated communication, and we have done some reading on the subject as well. At this point, we are skeptical.
Schulze proceeds to explain the theory behind FC: the alleged
apraxia, the alleged high levels of locked-in literacy skills, and the typical,
FC-generated messages: “I am not retarded;” “I want to go to a normal school.”
He then writes:
Maybe it’s possible. At some point Jordan knew his letters and even some sight words. Somewhere in the dark recesses of his mind this information may still survive.
That’s something I never thought of before. Parents with
late-onset regressive autism may be especially prone to FC, inasmuch as their
kids, pre-regression, had acquired significant amounts of language and perhaps
some literacy skills as well.
Shulze continues:
But is it likely? He doesn’t seem to suffer from apraxia; he would certainly be able to pick up a small piece of candy from a collection of similarly shaped objects if given the opportunity, for instance. Does it then make sense that he would be physically unable to push the appropriate keys independently to spell words and create messages if he had the mental capacity to do so? Well, it could be that the task of communicating makes him so anxious that he can’t control his movements. Whatever the likelihood, this prospect is too tantalizing to ignore, and, luckily, I will get an opportunity to see facilitated communication for myself on this very day at Boston Higashi. (p. 211)
I read on, eagerly turning the page:
For some time, one of the students at the school has been using facilitated communication at home. His parents have been so impressed with the results that they have asked the school if they would sponsor a workshop for the staff. They are convinced that the school should investigate the possibilities of this method for their own child and others attending Higashi. The school has allowed two trainers associated with Doug Biklen to conduct this staff development. An added bonus is that approximately fifteen students will be given the opportunity to communicate with these teachers on the Canon Communicator, a small typewriter-like device that is frequently used with this approach. (pp. 211-212)
As I pull into Higashi’s parking lot I have a tremendous feeling of anxiety. Even though I have felt that this idea has been oversold, I can’t help wondering. After all, proponents of this technique are suggesting that not just a few, but most of the children they have worked with can communicate. Even a kid whose abilities have been dormant for five years may succeed. When I think that Biklen’s article appeared not in “New Age Newsletter,” but in The Harvard Educational Review, I wondered even more. (p. 212)
Here we see, yet again, the power and perniciousness of prestige
publications promoting facilitated communication.
Schulze meets the trainers at lunch and hears their reports
on how the Higashi students did when facilitated:
They claim that the overwhelming majority of the children are communicating in a manner which would be nothing short of miraculous. The children’s reported statements are amazingly similar to the kinds of communication that were attributed to children in the Harvard Education Review article, including claims about the ability to read and think normally, despite being able to express their thoughts in typical ways. (p. 212)
But then Schulze reports on what the Higashi staff said
about the training:
Nobody reports that they could unequivocally establish that the children were communicating, and many are put off by the facilitators’ heavy handed hard sell. In fact, these facilitators seem to spend a good deal of time at lunch prodding everyone with questions about how they see their method fitting in with the Higashi program. (p. 213)
Despite this:
These sessions with the Higashi students do seem to convince one of the parents whose child participates. She comes away from the event absolutely certain that her child is communicating and later helps to organize workshops for other parents at the school, one of which Jill attends.
Meanwhile, I borrow one of the Canon Communicators that has been donated to the school to experiment with Jordan and home. (p. 213)
It occurs to me for the first time how integral the Canon
Communicator was back then to FC and its marketing. Somehow the notion that the
methodology is associated with a dedicated electro-mechanical device seems to
lend it some credibility. (As Janyce just told me, the company that marketed
it, along with another company that marketed another device associated with FC,
were sued for false claims that the devices enable users to communicate through
FC—see this report in Quack Watch.) But
Schulze takes a more flexible approach:
We also try to interest Jordan in the keyboard of our computer and in identifying letters arranged on a sheet of paper—as they would be on a typewriter, to lend a little portability to our efforts.
For a period of about three weeks, Jill and I work with Jordan in this manner to see if we can elicit from him the kinds of communication that is being reported. The results are mixed at best. At times we think that he is able to identify the letters that form his name; or that he is able to locate the “y” or “n” to answer yes/no questions. He also seems to do better at identifying a specific picture from an array when we hold his hand. But mostly he rejects the whole concept. Coincidentally, he is going through a period where he is particularly tactilely defensive, and he often pulls away his hand and appears agitated when we try to pursue the matter. (p. 213)
I find myself wondering whether this is a complete
coincidence.
Assuming that he is actually capable of communicating with us, our experience suggests that Jordan does not have a burning desire to do so. Moreover, the children whose parents claim thy are communicating don’t appear to be behaving any differently. The parents of one child who is facilitating claim that she now reads frequently and types such messages as “My mother isn’t dedicated.” But when I see her at school, she behaves as she always has, namely, jumping up and down and squealing. It seems a little unbelievable that children with little or no instruction in writing and reading have absorbed these skills. It seems even more incredible, however, that after demonstrating the ability to communicate they don’t look or act any differently. (p. 214)
As in Beyond, so too
with When Snow Turns to Rain: for all
that FC and its variants supposedly unlock, life more or less goes on as
normal. And I’m reminded of all those early stars of FC and Rapid Prompting
Method and the like who vanished from view—Peyton Goddard, Sue Rubin, Dov
Shestak, Emma Zurcher-Long, Carly Fleischmann, and a host of others. As
behaviors continue and life goes on more or less as it always has, it’s hard to
sustain the illusion over time.
As for the Schulzes in that moment, the illusion goes only
so far:
To this writing, Jill and I see the potential of facilitated communication. Indeed, we have tried the method again and again with Jordan over the past few years. But we must be honest in reporting that it hasn’t worked for Jordan. And claims of others that we have observed remain an unproven hypothesis. (p. 214).
In the 1 ½ page epilogue that follows, there is no further
mention of FC. As with Beyond, the
happy-ish note on which this harrowing memoir ends comes from elsewhere:
It took me six years of wandering the labyrinth of my child’s disorder to realize that the path to joy would lead back to me. I would come to understand through this trial that pinning my hopes for happiness on Jordan’s recovery or on any particular outcome for my life was totally absurd. If the empyrean was to be found at all, it would be located deep within my self, in a core of acceptance and love of life, regardless of its outer dress.
REFERENCES
Shulze, Craig. When Snow Turns to Rain.
Woodbine House, 1993.
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