A NOTE ABOUT
FC AND DJ’s
WRITINGS
As
I write in the book, the story of facilitated communication
is indeed mixed. There is lots of evidence on both sides
of the debate. What I’d ask of skeptics
is to keep an open mind while investigating the phenomenon. Most
people do not realize that there are now studies that
confirm, or partially confirm, the technique’s
efficacy with at least some non-speaking people with
autism. Nor do they realize that a growing number
of users have weaned themselves from their facilitators’ support
and are now typing independently. Some who still
require support have successfully passed message-passing
protocols. Some have even learned to speak through
typing! If Doug Biklen, Director of the Facilitated
Communication Institute and Dean of Syracuse University’s
School of Education, can post on the Institute’s
web site studies that have both proven and disproven
FC, then the technique’s critics ought to be
able to confront the new developments I mention above. Let’s
have a full and honest discussion. As part of
that discussion, let’s consider new research
from Morton Gernsbacher and Laurent Mottron that suggests
we have been using the wrong tests to measure intelligence
and “theory of mind” in people with autism. By
changing the testing vehicles, research subjects were
able to score much higher than before, rendering the
claim of mental retardation and lack of social awareness
in a vast majority of people with autism quite dubious. If
scientists have fundamentally misunderstood autism,
then it is not so unreasonable to imagine that FC might
work—at least for some.
Readers
of my book will see that Emily and I spent years teaching
DJ how to be literate. Only when he “proved” his
competence by pointing independently at answers
on a page or blackboard did everyone—parents,
teachers, aides—feel comfortable with the notion
of facilitated communication. (If a person is
not literate, FC can’t possibly work.) Some
critics have suggested that we should have waited to
publish this story after DJ had achieved independence.
I would respond that independent typing can take years
to accomplish and, moreover, that some might never
be able to accomplish it for reasons that are still
unclear. The idea of waiting for total independence
at the keyboard before one accepts the communication
of people with classical autism is both cruel and unfair. At
the same time, one has to be very careful about facilitator
influence.
I
am currently working on a project that looks at DJ’s
and others’ communication in a manner akin to
how literary scholars determine whether a newly discovered
poem might be that of a particular author—by
doing statistical analyses of diction, syntax, figures
of speech, etc. DJ has multiple facilitators
(some fifteen) and his very idiosyncratic style remains
the same across this group. So, in addition to
naïve facilitators producing information that
they could not have known, they produce it in a style
that is consistent, though the facilitators themselves
could not be more different with regard to age, gender,
income level, educational background, and political
convictions. Along with message-passing tests,
this sort of corroboration should lend more credence
to FC. If scholars in the contentious field of
literary studies can come to a consensus about a new
Shakespeare poem, perhaps psychologists, neurologists,
special-ed teachers and the like can come to a consensus
about the efficacy of facilitated communication with
some non-speaking people with autism. I should
say that I am also commencing a study of this idiosyncratic
style itself—what I call the “neuro-poetics
of autistic discourse.” A version of it
shows up in many non-speaking people with autism. By
emphasizing the beauty of such communication, we can
all push back against the tendency to pathologize difference.
With
respect to DJ’s writings on this web site and
in the book, I would underscore DJ’s capacity,
when pushed, to mimic neuro-typical discourse, though
not completely. In his Justin
Dart term paper, for instance, you can still see
traces of his idiosyncratic diction: “Dart’s
accomplishments are too numerous to freshly detail.” “Fresh” is
one of DJ’s favorite words, and it shows up in
all sorts of places and in all sorts of unexpected
ways. “Dad has written a book about my fresh
start,” he writes in a letter to the teachers
at the special school he attended before we adopted
him. When left to his own devices—that
is, when simply conversing—he produces a version
of DJ speak, as in his “Note to Dad”: “Yes.dearest
sad dad you heard fresh self and freshly responded
deserting your fears and just freed sad dear saved
me. yes. yes. yes. yes.” As
with any neuro-typical child who is simply conversing,
we don’t pressure DJ to produce perfect English
when he is typing. With his school assignments,
however, we encourage him to conform to the conventions
of standard English. We have marveled at his
capacity to do this—he is a straight “A” language
arts students—while preserving some aspects of
his style. He has an uncanny ability to organize
his thoughts; he understands how an argument works,
and these skills only continue to improve. But
there is still something there that is distinctly atypical
about his communication, something irreducibly him. So,
on the web site and in the book you will see a range
of writings, produced at different ages and with different
objectives in mind. Some things—whether
poems or school assignments—have been extensively
revised (by him); others have not.
Finally,
I would like to address the critics who, without having
read the book (they acknowledge as much), have said
some particular noxious things about DJ’s experience
of sexual abuse. There is no doubt that facilitated
communication became enmeshed in the recovered memory
controversy of the early-to-mid-1990s when claims of
sexual abuse ran wild. There were FC users who
typed allegations of sexual abuse that were clearly
untrue, but there were also some users who typed legitimate
allegations. Some of these allegations have even
stood up in court. Here’s what we know
about DJ: he was viciously attacked in foster care
at the age of three by a much older boy whose father
had sexually abused him. The authorities worried
enough about sexual abuse in DJ’s attack that
they specifically asked the doctor who was attending
to his physical injuries to look for signs of sexual
violation. Though the doctor found none, she
admitted that she wasn’t at all familiar with
male rape. Emily and I never once mentioned this
possibility precisely because we feared planting the
idea in his head. Years later, after DJ was literate
and began working through his past, he reported to
multiple naïve facilitators that he had been raped. If
critics of FC want to imagine that Emily and I have “dirty
minds,” they should talk to the psychiatrist
and psychologists who treated DJ and were absolutely
convinced that he had been sexual traumatized. People
do a terrible injustice to defenseless kids in foster
care, where sexual abuse is high, when they gratuitously
and maliciously dismiss their unspeakable agony.
