An open letter to my son’s skeptics:

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

Let me cut right to the chase:  no, he won’t do a message passing test for you.

He has proven himself to different clinical experts on multiple occasions, and to continue to demand that he do so again and again is both psychologically damaging and discriminatory.

For those of you reading this who have no idea what I am talking about, let me give you some context.

My son is autistic, apraxic (meaning his brain has difficulty translating intent into movement) and suffers from extreme anxiety.  He is also nonspeaking.  When he was 16, he learned to communicate by spelling out his thoughts, pointing to one letter at a time, first on a stencil, then on a laminated board, and currently working on a key board.  This has been life-changing for our whole family, but especially him.  He writes about it from time to time, on his own blog, which you can find here if you are interested:  https://musingsofabeginnersmind.com/ 

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM,He is in excellent company, as he is part of a small but rapidly growing group of individuals who communicate in a similar fashion.  They’ve been taught via various methods, some of which have been codified into more formal approaches, and some that are more home-grown methods developed by their families and professional support teams.  Some of these individuals now type independently.  Others still prefer to work with a communication and regulation partner to help them stay focused and manage sensory dysregulation and other issues.

They are an amazing group.  Some are poets, novelists, or visual artists.  Some have graduated from or are currently enrolled at prestigious colleges and universities such as UC Berkeley, Tulane, Oberlin and Harvard, among many others.  Most are advocates, some professionally, others as just something they do on the side to give back to the community.  Some have written op ed pieces in the Wall Street Journal, others have given presentations to the United Nations.  Some are active in non-profit advocacy groups or lead student-run organizations on campuses.  Some have shared their perspectives with medical providers, educators and architects to help these professionals understand how to better serve nonspeaking people.   

“This all sounds great”, you say.  “So what’s the problem”, you ask?  Well, there is a small but vocal group of individuals who are actively working to undermine these hard-working advocates.  They insist that what they communicate can’t possibly be their own thoughts, but rather assert that they are being manipulated, either consciously or unconsciously, by the individuals supporting them.  Their primary argument is that, back in the 1980s and 1990s, some individuals could not execute a “message passing test” developed by researchers.  (There are other studies, showing that other individuals could indeed perform this task as described, but those studies are ignored by this crowd.)  

The idea of the test is that something is communicated to a nonspeaking individual while their trained communication support staff is out of the room, then the support person is brought back into the room and the nonspeaking individual is asked to answer a question about the information conveyed.   They believe that, for individuals unable to respond correctly to their questions, that the only possible explanation is that the support person was the person communicating all along.  They don’t consider alternate potential explanations, such as issues with short-term memory retrieval or interference from heightened anxiety (as an analogy, think about how stutterers struggle more when in high pressure situations.)  Claude Steele’s work on stereotype threat at Stanford and later Columbia is particularly relevant to the potential role of anxiety here.  For those interested in understanding more, his book Whistling Vivaldi explains his research in a way that is readily accessible to non-academics.

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM,There may be other variables at issue as well.  Often tasks that seem easy to us “neurotypicals” can actually be quite challenging for autistic people.  Take for example, looking someone in the eye while they are speaking to signal that you are paying attention to them.  This is considered polite and normal behavior in western cultures.  But many autistics, both speaking and nonspeaking, have explained that they are hypersensitive to sensory input.  For some, looking at you while trying to listen to you is distracting, and even overwhelming.  For them, looking elsewhere so that they can focus on what you are saying signals attention, not distraction.  So unless autistic people are involved in research design through modern participatory methods, we may not even be able to identify all of the potential barriers present in a given experimental construct.

So, despite the fact that there are several difficulties in interpreting what it means when an autistic person has struggles with message passing, this group actively uses this research to attempt to undermine the work of *any* nonspeakers who spell or type to communicate, refusing to acknowledge their authorship without a message-passing test they’ve personally witnessed.  They are suspicious of anyone who declines to do so.  “Why wouldn’t you?” they ask.  Everyone who declines has their own reasons, here are our family’s:

  1.  Alex has already demonstrated to us, in real-life situations, that he is capable of communicating information that is unknown to us but can be verified by a neutral third party.  There are multiple examples of this, here’s one.   One morning he went and got his letterboard and handed it to me.  When I asked him what was up, he spelled “I need to go to the doctor”.  I asked him why and he replied “Ears hurt, throat hurts.”  There was no external evidence of this – no fever, his appetite had seemed normal at breakfast, he wasn’t pulling at or holding his ear.  We went to have him checked out by the doctor, who confirmed that one ear was indeed infected, the other had a significant amount of fluid pressing on the inner ear, and his throat was irritated by post-nasal drip.  So to summarize, Alex told me something I could not have otherwise known, which was then confirmed by a professional with absolutely no stake one way or another in how he communicates.

  2. When Alex was in the early stages of learning how to communicate this way, we did read the arguments of the skeptics, and we actively considered the possibility that we were “seeing what we wanted to see”.  So we sought out professionals to observe and evaluate Alex’s use of this method, after asking Alex if it was okay with him.  We asked five different professionals from a variety of backgrounds – a speech and language pathologist, a developmental pediatrician with an extensive background in autism, a neuropsychologist, his psychiatrist and his long-time board certified behavior analyst – to weigh in (all on separate occasions.)   Some of these individuals told us outright, before agreeing to observe, that they wanted us to know that they were highly skeptical.  However, all came away from their evaluations saying that they believed that Alex was communicating his own thoughts, not those of the person supporting him.  All were willing to put their findings in writing and to testify under oath at a due process hearing (an administrative legal proceeding used to attempt to resolve disputes between school districts and students and their families.)  So, we’ve already kicked the tires with the help of highly trained professionals with decades of experience across a variety of backgrounds.
     
  3. More recent research in this area has taken advantage of significant advances in technology to approach the question of authenticity from other angles.  For example, research from the University of Virginia using highly-calibrated eye-tracking technology has provided evidence that spellers are communicating their own thoughts and not picking up on some subtle clues from communication and regulation partners.  Another interesting project is underway at the University of Cambridge where researchers are using portable EEG to compare brain activity linked to speech comprehension in both autistic nonspeaking and neurotypical individuals.  The early results are quite promising.  Our family is certainly not “anti-science”.  In fact, we are avid readers of new research in neuroscience, cognitive linguistics and other areas.  Robust science approaches important questions from multiple angles.  The message passing crew will say “the science is against this”.  The reality is much more nuanced, which is not surprising, since so much about the neurobiology of autism is still so poorly understood.  United for Communication Choice, a grass-roots campaign to promote acceptance for all forms of communication, has compiled an excellent list of research supporting the validity of communication methods employed by many spellers and typers.  You can find links to many supportive research studies here.

  4. But the most important reason Alex won’t do a message passing test for you is he doesn’t want to, and we respect his choice.   It takes a lot of energy for him to spell out his thoughts, even more so since he unfortunately also suffers from chronic migraines.  He wants to use his limited energy to focus on interacting with people who are interested in what he has to share.   As we laid out in #2 above, he’s done his share of “proving himself” to people.   When is it enough?  How many people have to validate the authenticity of his words before he is extended the benefit of the doubt by people who have never met him?  Please stop for a moment, and really think about what it would be like to constantly have strangers demanding that you prove something to them before they will even consider your words.  Think about the psychological and emotional toll that would take.  Alex doesn’t owe you or anyone else any proof of his competence.  Some people believe women are intellectually inferior to men.  I don’t owe them proof to the contrary.  Some people believe Black people are intellectually inferior to white people.  My Black friends do not owe them proof to the contrary.  No one should have to prove that they are entitled to respect or the right to participate in society to the fullest extent they desire.


The group of individuals that consistently attacks those who spell and type to communicate will protest that they are really just seeking to “protect” them.  Protect them from what, exactly?  From getting the education they desire and deserve?  From making choices in their own lives?  From advocating on behalf of other non-speakers?  From pursuing career choices they find fulfilling?  

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

Is it possible that there have been cases where communication partners have influenced the individuals they are supporting?  Yes, of course it’s possible.   Good training programs provide explicit guidance on how to avoid this, but best practices are not always followed.  But influence is not limited to nonspeakers.  Neurotypical children have been influenced by unscrupulous people to lie in custody proceedings.  There have been instances, perhaps most famously in the case of the Central Park Five, where law enforcement officials have used interrogation techniques prone to extracting false confessions from innocent people. But there is a huge difference in being aware that influence may occur, understanding good practice to take steps to ensure that it does not, and asserting that it is the default.

Critics assert that because there have been some cases of influence or uncertainty around authorship that all people who use these methods are to be systematically ignored.  They assert that it is unethical for people to accept the words of spellers who are, in their eyes, being manipulated.  I urge you to think about what it really means, in real-life, practical terms, NOT to accept what these individuals are communicating as valid.   Earlier I discussed an incident where Alex conveyed to me that he was in pain and a doctor subsequently diagnosed an ear infection, a painful but relatively benign medical condition.  We have an acquaintance, however, for whom the stakes were much, much higher.  With support from his communication and regulation partner, this individual described certain symptoms, again not visible to an observer, to a doctor.    Based on this description, the doctor was concerned and ordered diagnostic tests, which confirmed his suspicion:  testicular cancer.  Happily, this individual underwent successful treatment and is doing well.  But if the doctor had refused to consider his communication as valid, he might not be here today.  

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM,Ironically (but happily), in real life situations, Alex has almost always been met with respect and interest when he communicates.   He’s had funny banter with waitresses at our local diner, important exchanges of information about his treatment plans with the neurologist who helps him manage his migraines and the psychiatrist who helps him manage his anxiety.  He’s been interviewed by journalists.  He’s part of a book club where other spellers share their views.  He’s presented and fielded real-time questions at an online symposium designed to help architects and interior designers better understand the challenges autistic people face in navigating the built environment.   In all of those situations, his communication has been respected and his right to participate embraced.  When his competence has been questioned, it’s generally been online, by people who have never even met him or seen him communicate.  But we all know the power of online speech, even when disconnected from reality, to influence people.  And to hurt people.

So this is my reply:  Nonspeaking individuals have had their intelligence, empathy and competence doubted for far too long.  It’s past time to extend them the benefit of the doubt.  Not only will their lives be better as a result, but yours will too.  They have so much to share with us.  If you pay attention you will find them witty, charming, original thinkers who have much to offer to all of us.  Engaging with them respectfully is a win-win situation.

Note:  Both Alex and the acquaintance mentioned in the third to last paragraph above read the text of this article before publication and gave their consent to having their experiences discussed herein.

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

8 responses to “An open letter to my son’s skeptics”

  1. anoja Rajapatirana says:

    As the mother of a 47 year old who has been typing since he was alsmost 18 I thank you for this article. My son too has proved himself (not that we asked him) in dozens of ways but he and I both refuse tests that demean and devalue him. I am appalled that this controversy still continues. Some people just can’t make the paradigm shift this requires.
    Anoja Rajapatirana

  2. Susan Baker says:

    Jennifer, what a fabulous, well-written piece! Thank you for sharing it. Nonspelling community members, like our family (my son is 12), can reference this article without having to recreate the wheel ourselves! — Thank you! And thank you to your son, Alex, for persevering. A gift to us all! ~Susan Baker, Toronto, Canada

  3. Joanne Doyle says:

    I’m only halfway through reading and I WILL carry on. Right here upto this point I am halfway through so maybe some would say I shouldn’t comment yet But I don’t care how many tests the freaky white coat brigade come up with and how many your son ‘so called’ passes! You know that your son communicates and understands and that is that!!! You are the expert you and your family not strangers getting paid lots of money to find inhumane ways of denying you as a mother, we are Mother Earth we don’t need pieces of paper they will never learn what we innately know ❤️ I will read the rest later I get a sick feeling the rest will be about their abusive ‘made up’ power being evil towards your selves and your community. It looks like my amazingly beautiful happy grandson has been MMR damaged Feb 2020, he’s still all of the above but eye contact has gone about 80/90% but his personal contact with you blows me away. He will just lean his cheek into mine, no eye contact very little words direct to me but loads of beautiful actions that Means I know he is telling me things and understands what I’m telling him. Bless you keep ✊ You and your son are the experts just remember that xxx

  4. Arthur Golden says:

    Excellent article! I am the father of a 49 year old with nonverbal autism who has used spelling to communicate since February 1991 which is 30 years.

  5. Sandi McClennen says:

    Jennifer – This is beautifully and very clearly written. Thank you!!

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