I S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM Science

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM

A few weeks ago, I published a blog entitled “An open letter to my son’s skeptics”.  Even though there is a section where I specifically reference exciting new scientific research, some readers with opposing views came away convinced that I am “ignoring the science” or an “anti-science.”   So let me clear things up:  I LOVE science.  Hard-core geek here.  Love hanging out with the kids at all the hands-on science museums such as The Franklin Institute here in Philly or San Francisco’s The Exploratorium. Worked with the tech industry for years.  Sometimes known to read scientific articles for fun.

There’s a lot to love – from life-saving medical treatments to cool videos from Mars delivered to small computers in our pockets.  And a seemingly endless supply of sources of wonder.  Every new discovery brings with it a whole new bunch of questions for us to explore.  I love the collaborative nature of it, and the way our collective body of knowledge grows and shifts over time, sometimes in startling ways.S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM

The basis of turning conventional wisdom on its head is often a new way of thinking about an old question or problem, bolstered by data from new tools for observing the world.  The ancient Greek astronomer and mathematician Aristarchus of Samos was the first known person to posit a heliocentric universe.  The idea didn’t get much traction until Copernicus independently arrived at the same conclusion during the Renaissance.  But it was really Galileo, backed by observations from the then-new tool of the telescope who sent the concept on its way to widespread acceptance (in the face of often fierce opposition from both the scientific and religious authorities of his day).  Similarly, Louis Pasteur used the invention of the microscope to disprove long-held views of spontaneous generation and confirm the principles of germ theory.

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPMNot all examples of upending conventional wisdom are this old.   For example, for decades medical textbooks and professors taught that gastritis and peptic ulcers were caused by stress and consumption of spicy foods.  When Marshall and Warren put forward the hypothesis that the bacterium H. pylori was responsible for a majority of cases, they were nearly laughed out of academia.  They proved their hypothesis in 1982, but it was so contrary to long-held beliefs that it didn’t gain widespread acceptance until Marshall ingested the bacterium and gave himself gastritis in 1985.  Shortly afterward, the treatment of these disorders was revolutionized, providing relief to millions.  In 2005 Marshall and Warren were awarded the Nobel Prize for Medicine.                                                                                                              

Why is it so hard to change people’s minds?  (Including our own!)  One powerful reason is known as confirmation bias, first described by Peter Wason.  All humans are subject to this tricky mental heuristic.  It means we have a tendency to heavily weigh information that agrees with what we already believe but discount information that contradicts it.  This tendency can be particularly damaging when incorrectly held beliefs apply to certain groups of people.

Like most people and things I love, science is imperfect.  Some of its darkest chapters have occurred when the mantle of science has been inappropriately used to justify bias towards and mistreatment of whole groups of people deemed to be somehow “lesser” than the groups doing the studying. 

In the U.S. and Caribbean of the 1800s, physicians and scientists widely asserted that people of African descent did not perceive pain to the same extent as people of European descent.   The “father of modern gynecology” J. Marion Sims operated on at least 10 enslaved black women without anesthesia or consent.   And the legacies of these myths die hard.  No serious scientist or physician would assert that belief today, and yet in the U.S. Black Americans continue to be systematically undertreated for pain.

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPMMany respected scientists of the Victorian era, including Charles Darwin, perpetuated the myth that women were intellectually inferior to men, a “fact” widely cited in denying them civic and economic rights.  And some of the examples are much more recent:  The American Psychiatric Association only retreated from viewing homosexuality as a form of pathology in 1973, by removing it as a diagnosis in its Diagnostic and Statistical Manual (DSM).

All people, including scientists, are shaped to at least some extent by the prejudices that are anchored in the societies in which they live.   It’s one of the reasons that diverse groups of individuals frequently outperform more homogenous groups – They bring different perspectives and can challenge and counteract one another’s biases.  It’s also one of the reasons that many modern researchers advocate for the participatory model of research, where representatives from groups that are being proposed for study actually participate in formulating the research studies’ objectives and design.participatory model of research

So, to bring this back to the subject of my initial blog, how do I reconcile my love of science with my views of the validity of the communication of nonspeaking spellers and typers, which supposedly flies in the face of the “scientific consensus” pushed by organizations such as ASHA?  Actually, quite easily.  I am aware of and have read ASHA’s position paper and some of the research cited therein.  Here are the science-backed reasons for which I disagree with their conclusions:

  • Their summary of the existing research is selective and excludes over 150 peer-reviewed studies that do not agree with their position paper.  It also excludes support from clinicians working with nonspeakers, despite the fact that empirical experience of clinicians is a key component of evidence-based practice.
  • Their argument is largely based on a number of so-called message-passing studies where some nonspeaking participants struggled to communicate messages conveyed to them when their communication partners were not present. However:

o They do not consider alternate explanations that have been shown to disrupt performance in testing in other situations, such as heightened anxiety, especially for groups who suffer from negative stereotyping. 

o Nor do they account for many real-life examples of nonspeakers communicating information to third parties that could not have been known to their communication partners. (And when real-life empirical evidence S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPMcontradicts your theory, you need to change the theory, not ignore the evidence.)  Many of these examples have occurred in medical settings where nonspeakers reported invisible symptoms with the support of communication partners, and doctors’ physical examinations and diagnostic tests subsequently confirmed medical conditions consistent with those symptoms.

  • Most of the message-passing testing experiments were done in the 1990s. Since then, we’ve obviously experienced a multitude of breakthroughs on the technology front, including portable EEGs that allow researchers to observe signs of comprehension in nonspeakers, and sophisticated eye-tracking technology that shows that nonspeakers’ eye movements follow patterns found in those of neurotypical people when typing out their thoughts, rather than the random movements one would expect if they were searching for clues from support staff.  These more modern approaches to research have been carried out at places like the University of Cambridge in the UK and The University of Virginia in the US, and have been the subject of peer-reviewed articles published by scientific journals of renown, such as Nature’s Scientific Reports
  • And most importantly, minimally and nonspeaking persons who type and spell to communicate have produced myriad first-person accounts of their struggles with apraxia and emotional regulation. They have also produced literature of remarkable beauty, journalism of great insight, and advocacy on behalf of themselves and their community that should not be ignored.

So there is not “scientific consensus” on this subject.  There is active inquiry, on-going research, and a wide spectrum of opinions, as is the case with most questions related to neuroscience and the brain, an organ that remains poorly understood by science despite centuries of study.

This is not some arcane academic debate of little relevance or import to the outside world.  This is a topic that has a substantial impact on nonspeakers’ access to communication, and by extension to education, medical care, and autonomous life choices.    The odds are already stacked against autistic people, whether or not they can speak.  They are statistically more likely to die young, be unemployed or underemployed, suffer sexual abuse, and be taught in a segregated, self-contained classrooms.   It is not a stretch of the imagination to say that nonspeakers are even more likely to be subject to these experiences.

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPMIn this context, it is simply unethical to ignore any attempts at communication from nonspeaking individuals.  In the absence of true scientific consensus, they deserve the benefit of the doubt.  Their spelled and typed communication, even when aided by a communication partner, must be given the same weight as spoken words.  Is influence possible?  Yes, of course it is, just as it is possible to influence people who speak to communicate.  But is it fair to assume that it is always present when spellers and typers communicate?  No, absolutely not.

The U.S. legal system presumes competence by default.  No matter what diagnosis an individual has – IDD, autism, CP, Down syndrome, etc. – when they turn 18 their parents or guardians must petition a local court to extend their guardianship into the person’s adulthood.  So, if nonspeakers declare themselves to be competent, and their parents and treating medical teams concur, why is it that a subset of skeptical individuals feel entitled to challenge that competency, particularly in very public fora?

Those who are concerned about the possibility of influence from communication partners are of course welcome to share those concerns.  All serious communication and regulation partners are well aware of this risk as well, and they follow best practices to avoid it.  But for critics to continue to assert categorically that no nonspeaker can possibly be communicating validly if they are supported in any way, flies in the face of both experience and recent research.  And this blanket rejection is a deeply troubling reminder of some of the ugliest chapters in the history of science.

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM,Jennifer Binder-Le Pape lives outside of Philly with her husband, two sons, one dog and one cat.  She’s a strategy consultant by day and an ally-CRP in other waking hours.  She is immensely grateful to all of the nonspeakers who have widened her perspective over the last few years!

 

 

The mission of I-ASC is to advance communication access for nonspeaking individuals globally through training, education, advocacy and research.  I-ASC supports all forms of augmentative and alternative communication (AAC) with a focus on methods of spelling and typing. I-ASC currently offers Practitioner training in Spelling to Communicate (S2C) with the hope that other methods of AAC using spelling or typing will join our association

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