Who Decides Which Voices Should Be Heard?

By: Jennifer Binder-Le Pape

Nonspeaking autistics who spell and type to communicate are increasingly being included in the wider community, to everyone’s benefit.  You can find them advocating for themselves and their peers with law enforcement agencies, at professional conferences, and with representatives of local, state and federal government. They are changing the shape of college and university campuses, not just as students, but also as teaching assistants, student organization leaders, commencement speakers, research fellows, etc.  The federal government’s Interagency Autism Coordinating Committee appointed its first nonspeaking autistic member in the summer of 2021.  Many are actively involved in nonprofit advocacy groups, as volunteers, staff, executive directors and board members.

And yet, with every accomplishment that is celebrated, there is aggressive pushback from some quarters regarding the legitimacy of their communication.  News outlets, universities and even the Autism Society of America have been criticized for including the perspectives of nonspeaking autistics. 

This small but extremely vocal group of critics frequently refer to a position paper from the American Speech-Language-Hearing Association (ASHA) seeking to curtail the use of various methods that have been developed to help nonspeakers (autistic, as well as with a variety of other diagnoses) access communication through pointing to letters or typing, while working with a trained communication and regulation partner to help them manage their apraxia and self-regulation challenges.

These critics are attempting to convey a message that 1) there is scientific consensus that 2) these methods are not evidence-based and 3) the potential harms they could cause outweigh any potential benefits they may have. However, many experts dispute ASHA’s claims on all three points. I detail their primary arguments below. It’s a long article. You probably don’t have time to read it. I told myself for many months that I didn’t have time to write it. But too much is at stake to not take the time.

Lack of Scientific Consensus

First, there is clearly no consensus on this issue. While ASHA is entitled to its opinion, so are the institutions that have evaluated the authenticity of specific individuals who use these methods to communicate and found them to be valid. Colleges and universities such as the University of California Berkeley, the Harvard Extension School, Tulane University, Oberlin College, Syracuse University, and many others all graduated or enrolled students who use these methods to access education. In each case, that means the speller or typer interacted with clinicians who assessed their needs and recommended accommodations for testing, admissions officers, disability office administrators, professors, teaching assistants, and fellow students.  Across the hundred or so spellers attending or having graduated from college, that’s thousands of people without a vested interest in this debate who beg to differ with ASHA’s position. 

In July 2021, the U.S. government’s Interagency Autism Coordinating Committee, chaired by the Director of the National Institute for Mental Health, named a nonspeaking autistic individual who communicates through typing to the committee for the first time in its history. They too, evidently, disagree with ASHA on the need to systematically ignore the contributions of spellers and typers.

Second, let’s look a bit more closely at the definition of evidence-based practice (EBP). This is easier said than done, as some estimates of the number of definitions circulating out there come in at 80+. I confess I stopped counting after I looked at two dozen. For the sake of simplicity, I cite ASHA’s own definition, pulled from their website:

Evidence-Based Practice 

Evidence-based practice is the integration of

• Clinical expertise/expert opinion
  • The knowledge, judgment, and critical reasoning acquired through your training and professional experiences
• Evidence (external and internal)
  • The best available information gathered from the scientific literature (external evidence) and from data and observations collected on your individual client (internal evidence)
• Client/patient/caregiver perspectives
  • The unique set of personal and cultural circumstances, values, priorities, and expectations identified by your client and their caregivers

When all three components of EBP are considered together, clinicians can make informed, evidence-based decisions and provide high-quality services reflecting the interests, values, needs, and choices of individuals with communication disorders.

Source: https://www.asha.org/research/ebp/  (current as of this writing, on 4/17/23)

There is actually considerable evidence in support of spellers and typers on each of these dimensions. Let’s take each in turn:

• Clinical expertise/expert opinion.  In the case of my son, we have sought and received opinions from the following categories of professionals:  speech-language pathologist, PhD-level neuropsychologist, a developmental pediatrician specializing in autism, PhD-level special education teacher, treating psychiatrist, treating neurologist, and treating family medicine physician. All offered their clinical judgment, under oath, that they view his communication as his own. Our family personally knows a number of nonspeaking autistic individuals with an equally impressive array of clinical supporters.

(As an aside, I would like to acknowledge that our family is privileged in that we can afford to obtain these clinical opinions. Consulting experts can be expensive, and their fees are not generally covered by insurance. As the U.S. Federal Reserve has frequently noted, more than one-third of all U.S. adults report that they would have difficulty covering an unexpected expense of $400. We need to keep these economic disparities top of mind when we are tempted to ask spellers and their families what proof they have.)  

• External (scientific research) and internal (clinical observations) evidence.

On the external/scientific research front, United for Communication Choice’s collection of research supporting the effectiveness of these methods from some individuals can be found   here and include work done at prestigious institutes of higher learning, such as the University of Virginia, and published in well-respected, peer-reviewed journals such as Nature’s Scientific Reports. It should be noted that, while many recent studies involve the use of sophisticated technology such as portable EEGs and eye tracking  devices, ASHA holds a strong preference for message-passing tests. In these experiments, a message is communicated to a speller or typer while their communication partner is out of the room, and then the partner is brought in and the speller is asked to play back the message. This collection of research also has several studies that demonstrate that some spellers and typers are more than capable of this skill.

Internal/clinical observations:  It is ironic, then, that ASHA also chooses to ignore the fact that many clinicians have reported real-world instances of successful message passing, meaning that spellers have communicated messages that could not have been known to their communication and regulation partners but have been independently confirmed by neutral third parties. In many instances, this has involved spellers conveying symptoms not visible to the naked eye to healthcare providers, who have then proceeded to physical examinations and/or diagnostic tests that have led to the discovery of physical ailments ranging from ear infections to cancer.  

• Client/patient/caregiver perspectives.

A number of first-person accounts have been published of the transformational impact of accessing communicating through spelling from both nonspeaking individuals and their caregivers. Here are two I have found compelling, but there are many others:  

Ido Kedar’s Ido in Autismland

Edlyn Vallejo Peña’s (editor) Communication Alternatives in Autism (each chapter includes the perspective of a different speller or typer)

So clearly, based on ASHA’s own definition of EBP, ample evidence supports these techniques. 

Potential Harms

Third, we come to the issue of potential harm. These are the harms I have seen most frequently cited by ASHA and their supporters.

• Time away from other therapies
  • Most spellers and typers have tried many other forms of communication, including traditional speech therapy, Picture Exchange Communication System and other picture-based systems, sign language, and ProLoQuo2Go.  Some have spent years trying to leverage these approaches before finding the path to spelling and typing. They have decided that these methods are most effective for them.
  • Critics tend to portray parents as ill-informed participants who have been tricked into using these methods by unscrupulous professionals. In reality, most parents who eventually find their way to exploring these methods for loved ones are highly educated, financially well-off, and acutely aware of the opposing viewpoints.
• The risk that it might not be their voice
  • I confess this one has always puzzled me. First of all, the “might” implies that ASHA knows that the question is far from settled. Also, what is the alternative? If a speller tells a parent that they want mac and cheese for dinner or that they prefer to swim rather than walk for exercise, and the parent is less than 100% sure that they did not influence the message, how is that worse than the parent guessing what the individual wants?
  • Critics also point to the possibility of influence by the communication partner. It’s true that the early stages of learning to communicate by spelling or typing often involve some level of verbal or gestural prompting, but so do every other form of augmentative and alternative communication. Speech-language professionals are all well-versed in the hierarchy of prompts and how to fade them, and the same is true for these methodologies.  
• False or unproven reports of sexual abuse 

This is probably the most serious charge that is repeatedly raised by critics. I would note the following:

• The sad reality is that disabled people are much more likely to be victims of abuse than to falsely accuse others of abuse. In 2018, National Public Radio broadcast the results of a year-long investigation into the abuse of disabled people the-sexual-assault-epidemic-no-one-talks-about . Using unpublished crime data provided by the U.S. Justice Department, they determined that people with disabilities are seven times more likely to be sexually assaulted than people without disabilities.  (And those are just the assaults that are reported. As the #MeToo movement has driven home, so many sexual assaults go unreported because the process of seeking justice is so traumatic for victims.)  So the greater risk actually is that nonspeaking people have NO means to report abuse.
• Is it possible that false accusations have been made in the past? Yes of course it is. And it is serious and tragic when this occurs. But false accusations have also been made by people who used the spoken word to do so. It is not because some people have lied or have been manipulated in the past that we assume that every new person who comes forward is lying. The authorities have a duty to investigate each claim on its own merits. We are not saying that the claims of nonspeakers should be taken at face value and not investigated, but we are absolutely saying that they should be given the same weight as claims made in the spoken voice.

Let’s weigh those against the harms of NOT treating spellers’ communication as authentic, for example:

• Not being able to communicate urgent medical issues to healthcare providers
• The inability to report abuse
• Not getting the education they deserve because they can’t express their comprehension orally
• The psychological and emotional toll of not being accorded their full right to participate in public and private settings
• The inability to exercise autonomy over the everyday choices in life – what to wear, what to eat, what to do, and how to spend their time and effort

And what about the harm to society as a whole, when certain types of voices are excluded? Neuroclastic has put together a fantastic collection of links to nonspeaking autistic contributions: listening to nonspeaking voices  I highly recommend you read through some of these before deciding whether this perspective is valuable.

So where does that leave us? In a situation where we have experts, evidence, and the theoretical potential for harm on BOTH sides of this issue. But we live in a world where we must make decisions every day with incomplete information and conflicting evidence. This is not new or unique to this context. We are all called on to exercise our powers of critical thinking when weighing the evidence and of turning to our moral values when deciding who gets the benefit of the doubt.

In the United States, our legal system generally gives individuals the benefit of the doubt. People are presumed innocent until proven guilty. Adults are presumed competent unless proven otherwise. No matter what a child’s diagnosis – autism, cerebral palsy, intellectual and developmental disabilities, and so on – parents who wish to retain guardianship beyond their child’s 18th birthday must petition a court to do so and provide proof that the individual is not competent. It seems to me that a system that errs on the side of not stripping individuals of their rights without specific proof is a good one.

Final Considerations

I would like to believe that we live in a society where reasonable people can disagree with one another civilly and constructively. To that end, I’d like to ask those who dismiss the communication of spellers and typers as not authentic to please consider the following:

• Respect the fact that many experts have come to very different conclusions in individual cases. They do not deny that influence is possible, but they do not make the unjustifiable leap of assuming that it occurs in all instances. In fact, all reputable training programs for communication and regulation partners place great emphasis on using best practices to avoid influence. Each individual deserves to be assessed by qualified, open-minded clinicians. Blanket rejections of any particular method are unfounded.
• Neither individual clinicians and journalists, nor the institutions that employ them, deserve to be attacked for coming to different conclusions than you do. Stop trying to silence them.
• By all means, continue to steer families and individuals seeking your counsel away from these methods if you continue to believe that the risks outweigh the benefits, but perhaps acknowledge that other experts disagree.
• Do NOT, under any circumstances, attack nonspeaking individuals who choose to exercise their right to participate in their communities via these methods. You don’t have to attend their presentations, read their blogs, or watch documentaries about them if you don’t view them as valid or valuable. But do not attempt to discredit them or block those who DO value their perspectives from accessing them.  
• Also, on a side note, for those of you who are fond of retelling the Clever Hans story in support of your arguments: Analogies that implicitly compare disabled people to barnyard animals are indefensibly dehumanizing. Just stop.

And for those of you who have not yet made up your minds in this debate, I would ask you to reflect on whether there is a greater harm to be done by listening to the spellers and typers or by silencing them.

Jennifer Binder-Le Pape lives outside of Philly with family.  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!

2 responses to “Who Decides Which Voices Should Be Heard?”

1. Louise Stephenson says:

   May 16, 2023 at 6:21 am

   Thank you so much for a brilliant article, this will come in handy!

   Reply
2. Jeff Binder says:

   April 19, 2023 at 5:23 pm

   You are an amazing advocate for autism and an incredible human being. Anyone and everybody should be lucky enough to have you in their corner fighting for them. I am just really proud that I get to call you my sister.

   Reply