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
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:
(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.)
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.
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.
This is probably the most serious charge that is repeatedly raised by critics. I would note the following:
Let’s weigh those against the harms of NOT treating spellers’ communication as authentic, for example:
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:
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!
Thank you so much for a brilliant article, this will come in handy!
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.