Spelling to Communicate Goes on
Trial: Part II
This is
the second part in a series on a Spelling to Communicate (S2C) lawsuit against
a school district. You can read more about the background in my first post, but,
in brief, the lawsuit arose because the school district, the Lower Merion
School District of Lower Merion PA, refused to hire an S2C “communication
partner” for the parents’ non-speaking autistic son (A.L.).
This series
focuses, specifically, on a hearing that occurred last December that I now have
permission to write about. The hearing was a Daubert hearing, aka a “voir dire”
(an oral questioning/examination) of several of the plaintiff’s expert
witnesses whom the School District sought to disqualify.
In my
previous post, I described the examination (as opposed to cross-examination) of
Dr. Anne Robbins, the
neuropsychologist whom the parents hired to do an independent, neurocognitive
assessment of A.L.: an assessment that was based, in part, on output that A.L.
generated via S2C. The examination of Dr. Robbins was conducted by one of the
plaintiff’s lawyers, Nicole Reimann (the
only one of their lawyers in attendance at this hearing). Dr. Robbins’
testimony reports several psychologically extraordinary things about A.L.:
·
He has average or above
listening comprehension capabilities but (on certain nonverbal subtests) didn’t
understand what she was asking him to do.
·
He couldn’t point to a
numbered choice on a stationary surface but could point to a number on a held-up letterboard.
·
His scores, based on
S2C-generated output, were much higher on verbal subtests than on nonverbal
visual pattern subtests: a striking reversal of what’s generally found in
autism.
In this
post, taking advantage of the public but pay-walled transcript I’ve acquired, I’m
going to skip back in time to the morning of December 2nd, and to a
part of the Daubert hearing that I didn’t attend: the examination of Dr. Wendy Ross. Dr.
Ross, the director of Jefferson Health Center for Autism and Neurodiversity, is,
as we’ll see in the course of this examination, an influential and highly
celebrated figure in the Philadelphia autism and neurodiversity scene.
As
before, I’ve put my commentary in bracketed italics and elided the parts of the
examination that are more procedural in nature and/or less relevant to the
questions that concern us here at FacilitatedCommunication.org. These questions
are: what can we learn about the validity of the instances of S2C that have
arisen in this case? And, in the case of the examination of Dr. Ross: what
leads an accomplished medical professional who is highly experienced in autism
to believe in the validity of S2C? And what sorts of justifications for this
belief does this autism professional provide in response to friendly
questioning while testifying under oath?
The
examination begins with Ms. Reimann asking Dr. Ross how she knows A.L.,
referred to here as “Alex.”
Ross: Alex was my patient.
Reimann: Did he also participate in programs that your nonprofit developed?
Ross: Yes. So I had a practice, and I also had a nonprofit that worked on
community participation. And many of my patients and other people from the
autistic community participated in those experiences.
Reimann: And did Alex also serve at some point as an advisor for neurodiversity to
give perspective as a person with autism?
Ross: Yes.
[Dr. Ross does not specify the means by which
A.L. provided advice, but presumably it, like all the other verbal output that
has been attributed to him, was generated via S2C.]
Reimann: And you are a developmental pediatrician, correct?
Ross: Yes.
Reimann: And what is the practice focus of a developmental pediatrician?
[There follows a lengthy discussion Dr.
Ross’s educational background, which includes Mount Sinai, Yale New Haven Hospital,
and Boston Children’s Hospital; her
initial practice at Albert Einstein Medical Center; and her current positions
as Associate Professor at Jefferson University and Director of the Jefferson
Health Center for Autism and Neurodiversity.
Also discussed is her work in school settings; her collaborative
work with teachers, speech and language pathologists, and psychologists; and her work, in
particular, with three individuals:
·
Neuropsychologist
Dr. Anne Robbins (see above)
·
Speech-language pathologist Susan Chaplick, whom
A.L.’s parents introduced to S2C several years ago and who accepts S2Ced output
as valid, and
·
Child
and adolescent psychiatrist Dr. Manley Ghaffari, who testified in an earlier hearing that the letter board was
“extremely effective in allowing [Alex] to express his thoughts and feelings.”
Dr. Ross characterizes all three individuals as having
excellent reputations.
Discussed as well is Dr. Ross’s longstanding interest
in autism and how 60-70% of her patients are autistic, totaling “probably
thousands.” We learn about her
nonprofit, Autism Inclusion Resources, which has worked to make museums,
sporting events, and air travel more accessible for autism families. We learn that New Jersey Senator Lautenberg
and then-transportation secretary Ray LaHood have each asked her to share her
findings—e.g., with the Department of Transportation. We learn that she was
selected as a top-ten CNN hero. We learn about how she partnered with the
Special Olympics to get people with intellectual disabilities included among
those prioritized for early COVID vaccination, leading to a publication in the
New England Journal of Medicine Catalyst. And we learn about how she worked
with the Pennsylvania court system to make family courts more autism friendly
by educating lawyers, judges, and guardian ad litems about autism; by helping to design their
sensory rooms; and by writing “visual stories” that could be used across the
state with autistic individuals.
We learn that Dr. Ross spends 60 or so percent of her
professional time with direct patient care, including diagnosis and follow-up
visits; and we learn about her involvement in a new pavilion at Jefferson
dedicated to specialty programs, where she included “my population” as design
consultants.
Following the enumeration of Dr. Ross’s credentials
and accomplishments, there’s a discussion of anxiety in autistic individuals,
of how it stems from communication barriers and heightened sensory awareness,
of how it can affect performance, and of why environment is so important for
neurodiverse populations.
Reimann then offers Dr. Ross’s CV as an exhibit, and
Dr. Ross as an expert.]
Reimann:
So plaintiffs offer Dr. Ross as an expert in behavior and developmental
pediatrics and the diagnosis and treatment of autism.
[At this point, Mike Kristofko, the lawyer
for the Lower Merion School District, interjects the following:]
Kristofco:
I don't have any basis to question her qualifications in those areas. The
motion was really about her opinion she was given about communication, which
she is not being offered as an expert in.
The Judge:
Okay. So for purposes of this hearing, we will certainly have her as an expert
in that.
[Reimann agrees, and her examination resumes.]
Reimann:
Can you tell us just -- how does autism affect a person's ability to
communicate?
Ross: So, communication has a few parts. There's receptive language, our
understanding of language; our expressive language, our use of language or communication;
and then there is the motor component of expressive language, which is sort of
like the sub-area. And when we think about language, it's not just about spoken
language, there is nonverbal communication. Somehow we use our eyes, our hands
to communicate, how we point, socially reference.
[Here we see Dr. Ross, like other FC believers,
making much of the motor component of expressive language, as if motor
difficulties are the main challenges in non-speaking autism, which they aren’t.]
Reimann: Okay. And how does the inability to reliably communicate affect persons with
autism?
Ross: Well, if you can't communicate, you could get easily frustrated or
anxious.
Reimann: And can autism also affect motor movement?
Ross: Individuals with autism might have a low tone or they might have a
component of apraxia, which is a problem with motor planning. It can affect
different parts of your body. It can affect, you know, like your overall
ability to move. It could affect all different parts.
[Many individuals with autism have low muscle
tone, and some have apraxia of speech, but there’s no evidence that individuals
with autism are impaired in their “overall ability to move.” Most attested motor
difficulties in autism are difficulties other than apraxia: see this discussion.]
Reimann: Okay. So I’ve heard of apraxia speech, but apraxia, is it something more
than just --
Ross: You could have apraxia of any body part that moves.
[That doesn’t sound quite right. The various proposed non-speech apraxias (and not
all are agreed upon; see Wikipedia for a
review) are these:
·
nonspeech
oral apraxia (smiling, puckering, blowing, or swallowing)
·
limb-kinetic
apraxia (which mostly pertains to finger movements, e.g., tying shoes or
typing)
·
gait apraxia
(difficulty walking)
·
constructional
apraxia (e.g., difficulty copying a simple diagram or drawing basic shapes) and
·
oculomotor
apraxia (difficulty with voluntary eye movements).]
Reimann: Okay. And... is there an interrelationship between the executive
functioning and autism or an intersection there?...
Ross: Yeah. So a lot of individuals with autism have the executive functioning
deficits that can impact apraxia. There is an interplay because it affects
motor planning, so executive functioning is sort of like our inner
administrative executive that helps us execute what we want to do. So it can
impact motor movements. So that things that are automatic can be done quite
easily, but things that need spontaneous ongoing development can be very
complicated.
Reimann: Okay. So just in terms of Alex, are you aware that -- so like that he can
type, like, lists of things. Do you know that?
[Court documents report that A.L. can
transcribe lists of words by independently typing them out on an electronic
keyboard.]
Ross: Yes.
Reimann: And so how is that different than -- from being able to spontaneously
generate thoughts through typing?
Ross: So some individuals with autism, instead of a repetitive behavior, they
can have -- well, his repetitive behavior is hyperlexic, so they can type repeatedly
or have special interests, but that's different than communication. That's just
a repetitive sub-stimulatory behavior for him.
[This is the first time I’ve heard anyone propose hyperlexia/typing
words from lists as an example of a repetitive behavior in autism. More typical
examples are hand flapping, rocking, toe-walking, head banging, and the
spinning of or lining up of objects (see here).]
Reimann: And how does executive functioning sort of come into play with that?
Ross: Well, that does not require executive functioning, because it's something
that is done by approach.
[While transcribing a list of words by typing
them out doesn’t involve as much executive functioning as communicative typing,
it does involve motor planning—and thereby rules out apraxia. That is,
regardless of how “repetitive and self-stimulatory” and non-communicative
A.L.’s typing transcription abilities/activities are, they aren’t consistent
with a diagnosis of any sort of non-speech, non-oral apraxia.
Limb-kinetic
apraxia, again, mostly pertains to finger movements, e.g., typing.
Constructional apraxia entails difficulty copying
things, e.g., words.
And oculomotor apraxia entails difficulty with
voluntary eye movements, which includes those required for transcribing a list
of words via typing, particularly when one is typing with just a pointer finger
(as is reportedly the case with A.L.) as opposed to touch typing. Transcribing
a word with a pointer finger would require deliberately moving one’s eyes back
and forth between a word on the list and the keyboard.]
[With no
further discussion of apraxia or typing, and no discussion at all of why Alex
needs a letterboard to be held up in order to type in a non-repetitive, non-self-stimulatory, communicative
way, the examination turns to the heterogeneity of autism. It’s only
after this discussion that Reimann turns to letterboard-based communication.]
Reimann: So let's talk about Alex's communication with the letter board. Was Alex
your first patient to communicate with a letter board and a communication partner?
Ross: Yes.
Reimann: And have you had other patients after Alex who communicate with a letter
board and communication partner?
Ross: I have.
Reimann: And have you had other patients who have tried to communicate with a
letter board and communication partner but have been unsuccessful?
Ross: Yes.
[Patients, plural. This is significant.
First, it throws into question the high success
rates proclaimed by S2C practitioners, most notably S2C “inventor” Elizabeth
Vosseller. One of Vosseller’s most widely broadcast statements is the one that
opens the pro-S2C documentary Spellers: “There’s never any doubt in my mind
when someone walks into my room that they can and will spell for me.”
Second, it raises the possibility that some families
who briefly try out S2C quietly disappear and keep their mouths shut—except in
private conversations with, say, their pediatricians.
Third, it raises the question of what S2C failure
looks like. Is it lack of compliance by the autistic individual? Perhaps not
all minimal speakers with autism are willing to “tolerate” S2C—i.e., to sit or
stand still and poke at a letterboard held in front of their faces, at least
for long enough to spell apparently meaningful phrases.
Or is S2C failure the result of a decision by the
parents to stop using S2C? Perhaps for some parents, red flags appear early on.
Perhaps they discover (as some report they have)
that they never have any success when they’re the ones facilitating their child
and find this troubling enough to
abandon S2C (not everyone does). Or perhaps they find themselves confronted,
when the S2C practitioner first “unlocks” their child, with S2Ced output exhibiting
literacy and verbal sophistication at skill levels that just don’t seem like
something their child could have secretly attained (I know of at least one
parent who abandoned S2C for this reason).
As we’ll see below, however, Dr. Ross has something completely
different in mind for S2C failure.]
[At this point in the proceedings, the judge
establishes that A.L. has been Dr. Ross’s patient for 8-10 years, and there’s
some discussion about where Dr. Ross was affiliated when she first started
seeing him.]
Reimann: Okay. And for the patients who have tried communicating with a letter
board and communication partner, for the ones that have been unsuccessful, did
they continue to use the letter board and communication partner even though
they were not having success?
Ross: No.
Reimann: And approximately how many times have you been with Alex when he has
communicated with a letter board and communication partner?
Ross: I don't know an exact number of times, but he has done it in my office;
he has done it at experiences we have had in the community. He presented at a
couple of conferences. One was a symposium that we have, which is an
international symposium on autism and the built environment. And he and some of
the other individuals who spell to communicate presented it.
[There is a clarification that this was
during COVID and that the presentations were on Zoom.]
Ross: So...
part of the statements were prewritten and then people did ask questions. And
spellers communicated on Zoom. And... the way we had them set up is people could see
them spelling on the camera. It wasn't just Alex, it was also some other
individuals.
[Here the judge jumps in.]
The Judge:
I guess I have seen some of the videos, so I am trying to understand, because
it seems to me that when he is using the letter board -- and I’ve only seen a
very minor segment of videos, not a huge amount. But how did that work when he
was asked questions in terms of -- it seems to me like he touches the letter
board, touches the letter. The communication partner may or may not say the
letter out loud. They might write it down. But it sort of seems like it's a
run-on sentence. Does that make sense?
Ross: Sometimes,
Yes. He has some tactical errors.
[“Tactical errors.” I’ve never heard this
term used before in the context of S2C, and I have no idea what Dr. Ross meant
by it.]
The
Judge: Forget the errors. Just say that if he does a whole running sentence,
once you see it at the end, you can see the sentence. But say he wrote, “I am
happy and sad.” He might do that whole thing. And then once you see it, okay,
the letters all make out that sentence, right?
Ross: I see
what you are saying. But I guess from what I remember from the conferences, his
statements were much shorter.
The
Judge: Like “yes” or “no” or something?
Ross: Or
more like short answers, not complete sentences.
The
Judge: So it's obvious what the word is then once he spells? Everybody in the
audience knows?
Ross: Yes.
The
Judge: And nobody has to say it out loud?
Ross: No.
The
Judge: So you see it based on him doing the letters?
Ross: Touching
the board, yes.
[A couple of clarifying questions ensue.]
The Judge:
Do you remember an example of what he said?
Ross: I mean,
I think it varies. Sometimes when he writes, like it's pretty obvious, like you
hear the letters and you know. Sometimes I have had it where if it's just he
and I in my office and his statements tend to be longer, sometimes I will write
it and then I will look at it....
[This statement appears to suggest that Alex
has typed messages in Dr. Ross’s office without a communication partner present—unless Dr. Ross herself served as his communication
partner.]
[A discussion ensues about how the length of
A.L.’s utterances can vary, as is the case for everyone.]
The
Judge: I am trying to understand for your audience how they were able to
understand [what A.L. was typing.]
Ross: Right.
So they would see him touching the letters, and then sometimes somebody would
say it afterwards. But you could see that he used those letters.
[There’s one more clarifying exchange and
then Reimann resumes questioning.]
Reimann: For that symposium, who acted as his communication partner?
Ross: It was Tom.
Reimann: Tom Foti?
[Tom Foti is the communication partner who is
to assist A.L. at the trial, and who is to be examined and cross-examined later
this day.]
Ross: Yes.
[Another clarifying exchange.]
Reimann: And has Alex initiated conversations with you?
Ross: Yes.
Reimann: And do you have an opinion to a reasonable degree of professional
certainty as to whether the letter board and communication partner is an
effective method of communication for Alex?
Ross: I believe for Alex it is.
Reimann: And do you have any doubt that Alex's communication with the letter board
and communication partner are his thoughts and no one else's?
Ross: Yes, I believe that.
Reimann: Do you have an opinion to a reasonable degree of professional medical
certainty as to whether Alex's need for a letter board -- as to whether Alex
needs a letter board and communication partner to communicate?
Ross: Yes, I think he does.
Reimann: And what is the basis of your opinion? So... you saw Alex before he
started communicating with the letter board, correct?
Ross: Yes.
Reimann: And can you just tell us what that communication looked like?
Ross: It was a lot less than when he had the letter board. And I have been with
him. For example, when he went to see Dr. Stevens [the doctor who became his new doctor when he transitioned from
pediatrics to adult care], I accompanied him, and he told her things that
there was no way we would have known. Like he said his ears hurt, and it wasn't
like he was touching his ears and she looked in his ears and he had an ear
infection. So, you know, I believed that he was communicating. I don't see how
just from having watched him, nobody touches him, nobody is moving the board, I
don't see how it could not be his communication.
[We’ll return to the ear infection later. For
now let’s just note that we see here the lay person’s lack of familiarity with
subtle cues (both subtle facilitator cues and subtle pain cues) and the lay
person’s susceptibility to naïve realism: the fallacy that we can trust that
what we perceive through our senses is a thorough and accurate depiction of
reality.]
Reimann: Okay. And do you have an opinion to a reasonable degree of medical
certainty as to whether not letting Alex using the letter board and communication
partner silences him?
Ross: I think it absolutely silences him.
Reimann: Do you have an opinion to a reasonable degree of medical certainty as to
whether communication with the letter board and communication partner is
effective for all persons with autism?
Ross: I don't think it's effective for all persons with autism.
[I suspect that the purpose of harping on
this point is to lend credibility to Dr. Ross’s judgment that S2C works for A.L.
That is, repeated reminders that she’s
noticed cases where S2C doesn’t work might help suggest that Dr. Ross is
able to discern the difference between S2C successes and S2C failures. In fact,
of course, there is no evidence that S2C has ever been successful.]
Reimann: And why is that?
Ross: I don't know. I don't know all the persons with autism. But I do feel
like it's effective for Alex.
The
Judge: For the patients that you have had that it's been unsuccessful for, do
you know why?
Ross: I don't
know why. I think sometimes the parents were moving their fingers, like
were holding them or touching them. So it wasn't clear to me that it was their
communication as opposed to their parents moving their hand. They didn't – you
just -- they didn't seem able to communicate things that other people would not
have known unless they communicated it like Alex has in the past. And their behaviors
didn't seem related to the communication... So they didn't seem to have a
change in their behavior and demeanor after using the board. But I don't know
why it doesn't work for some people and why it works for other people. But
that's no different why I don't know certain other things work for individuals
with autism.
[“It wasn't clear to me that it was their
communication as opposed to their parents moving their hand”—this disclosure is
one of Dr. Ross’s most significant. What she has in mind by S2C failure, as it
turns out, isn’t kids who don’t comply or parents who abandon it, but facilitator
control. This makes Dr. Ross the only S2C believer I’ve ever heard publicly
acknowledge that in some S2C partnerships
—ones that she’s actually observed first hand
involving her own patients, presumably patients from the general Philadelphia area--the S2C-generated messages may be being controlled
by the facilitator.
And yet, in assuming that this happens only to some
individuals, Dr. Ross doesn’t explain why it wouldn’t happen to others.
Presumably the point of this line of questioning is
to suggest that Dr. Ross is aware of the possibility of facilitator control and,
thus, to add credibility to her claim that she has observed no facilitator
influence over A.L. Of course, the fact that someone is able to detect the most
obvious signs of facilitator control doesn’t entail that they’re able to detect
all signs of facilitator control.]
The
Judge: And how did Alex communicate with you before the letter board?
Ross: I mean,
not a lot. I mean, I don't know. Sometimes -- you know, it's really hard to
know when somebody with autism is even engaged in nonverbal communication
because sometimes it's easier for them to attend when they are not making eye
contact, or they might be having repetitive behaviors. But when he is using the
letter board, he can do that for a prolonged period of time. I will ask a
question, and he can provide a somewhat complex answer that only he would know.
It's reciprocal...
[No specific example is offered here of A.L.
outputting a complex answer that only he would know.]
Ross:
[Continuing] When we look at autism and we are doing an assessment, we use
something called the autism diagnostic observation schedule, and there are
different levels of communication. So there is like: can somebody answer a question?
Can they answer a question and then elaborate on their answers spontaneously?
Can they answer a question, elaborate on their own response spontaneously, and
then ask the examiner a question? Because a conversation is very reciprocal.
It's like a tennis match. It's not like squash where it's hitting against the
wall or you are just serving, right. It's an ongoing, reciprocal, social
experience. So the nature of his communication became more reciprocal and
sustained by Alex.
[Squash is as ongoing, reciprocal, and social
as tennis, actually; apparently the sports venues Dr. Ross has consulted on
don’t include the large number of squash facilities in the Philadelphia area, including the world’s biggest.
But more important than Dr. Ross’s squash remarks is
her commentary about the autism diagnostic observation schedule (the ADOS). The
ADOS is considered the gold standard for measuring autism severity. Dr. Ross makes it sound like A.L.’s scores on the ADOS’s
measures of conversational reciprocity would improve dramatically were he
measured based on S2C-generated output. And apparently this doesn’t raise any questions
in Dr. Ross’s mind about whether that output is authentically A.L.’s.]
[At this point Reimann resumes her
questioning with a discussion of A.L.’s transition from her practice to Dr.
Stevens’ practice when he aged out of
pediatric care, and this is where we return to the earlier mentioned ear
infection.]
Ross: This was when Alex transitioned, and he also had an ear infection and
sinus infection.
Reimann: And who was his communication partner? Did he use the letter board to communicate
with Dr. Stevens?
Ross: Yes.
Reimann: And who was his communication partner?
Ross: His mother.
[This
raises the possibility that his mother was also present and assisting Alex’s
letter selection during the previously mentioned visits to Dr. Ross’s office.]
Reimann: And did Alex communicate anything about how he was feeling at that visit?
Ross: Yeah, he said that his ears were hurting and that he had sort of
pressure.
Reimann: Okay. This medical record, does that reflect Dr. Stevens's examination of
Alex?
Ross: Yes.
Reimann: And what did she conclude?
Ross: She concluded that he had a bilateral otitis media, which is an ear
infection. And she also concluded here that she was conversing with him.
[And with that, we’ve arrived at one of the
plaintiff’s main exhibits in defense of S2C: the fact that, when A.L. informed
Dr. Stevens through S2C that he had an ear infection, her examination of him
confirmed this and led her to conclude that A.L.’s S2C-generated message was
coming from him, not from his mother.]
Reimann: Okay. And so is this record made as part of a regular medical visit at Jefferson?
Ross: Yeah, this is part of the electronic medical record.
Reimann: And are these records made at or near the time of the visit?
Ross: Yes.
Reimann: And is this medical record created as part of Jefferson's internal record
keeping?
Ross: Yes.
Reimann:
That's all I have. Thank you.
The ear infection story is the only story I’ve encountered of an S2Ced
person communicating information that the communication partner purportedly
didn’t have access to. I first came across it in 2021, in a piece by A.L.’s
mother entitled “A Letter to My Son’s Skeptics.” In it, A.L.’s mother gives
four reasons why A.L. shouldn’t have to participate in a message-passing test—the
“most important” being that “he doesn’t want to, and we respect his choice.”
That is her fourth reason; her first is that there are “multiple examples” of
A.L. communicating information that she says couldn’t have been known to others
and that were verified by third parties. She cites only one example, however: the
ear infection story.
And that singular story makes a second
appearance in court, in the cross-examination of Dr. Ross by the school
district lawyers, to which I’ll turn in my next post.
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