(*and other forms of spelling and typing as communication)
When exploring opinions on Spelling to Communicate (S2C) and other forms of spelling and typing as communication online, various perspectives emerge. Some express unfavorable views, often rooted in outdated assumptions about autistic individuals, which create myths about S2C that often will deter parents of nonspeaking autistics from exploring it as a communication option for their child. These strongly worded critiques may mislead those considering the use or support of S2C or similar methods. I recognize the potential reservations these comments may instill. I shared some of those concerns when my husband and I were first considering whether S2C might help our son build communication skills at the age of 16. However, in addition to being the mom of an autistic nonspeaker, I’ve been a strategy consultant for more than two decades. My profession has trained me to dive into the facts and data when confronted with conflicting opinions. So that’s what I did, and examining the factual evidence led me to accept the possibility that S2C’s approach can help many nonspeakers communicate.
Our son took S2C from possibility to reality. Through his hard work, he learned to communicate on a letter board with the support of a communication and regulation partner (CRP). He showed us that S2C is effective communication for him. He has also shown numerous educational, medical, and communication professionals that S2C is an effective way for him to communicate.
He is far from alone in having demonstrated this. During the past few years, an increasing number of conferences, nonprofits, universities, and media outlets have welcomed the participation of nonspeaking autistics who spell and type to communicate. Unfortunately, these institutions typically get “called out” by a small but vocal group of people who seem determined to shut down these efforts at inclusion by insisting that these forms of communication are somehow illegitimate.
These people are entitled to their opinions. But for them to present those opinions as anything close to “scientific consensus” is incorrect at best and arguably intellectually dishonest.
Continually calling into question nonspeaking people’s communication authenticity has been deeply hurtful to many and results in frustration, anxiety, depression and exhaustion. My son’s good friend Gregory Tino has written this article, which eloquently expresses the hurt he experiences when being mocked by detractors of S2C. To Gregory, and to all nonspeakers who use spelling and typing to communicate, I offer the words of James Baldwin, the great American writer and human rights activist: “Please try to remember that what they believe, as well as what they do and cause you to endure does not testify to your inferiority, but to their inhumanity.”
The Americans with Disabilities Act (ADA) guarantees that people with disabilities have the same opportunities as everyone else to participate fully in society. Having shown that S2C is effective communication for them, my son and other nonspeakers who rely on a letter board and CRP should not be silenced by detractors touting myths as science. Herein, I share some of the most common misconceptions I hear about S2C and some facts that contradict them. Where feasible, I’ve included links so you can go to the sources directly and form your own opinions.
10 Common Myths about Communication Methods for Nonspeakers and S2C Debunked
Debunking S2C Myth #1: No research supports S2C as a legitimate form of communication.
A growing body of research supports the principles underlying S2C and other nonspeaking communication methods, showing, for example, that some forms of autism are primarily motor-based disabilities and not cognitive ones. All of these show ongoing research to support S2C as a legitimate form of communication
- Dr. Elizabeth Torres of Rutgers University has done groundbreaking work establishing the role of motor deficits in autism. She provides an overview of some of her key findings in this interview: E Torres on Autistic Neuro-motor Differences
- Cambridge University’s study on the Hidden Ability in Autism, led by Dr. Alex Woolgar, uses portable EEGs to measure specific types of brain activity to establish nonspeaking individuals’ complete comprehension of spoken language. The phase I study is summarized here: Unconstrained multivariate EEG decoding can help detect lexical-semantic processing in individual children
- Dr. Vikram Jaswal of the University of Virginia has published peer-reviewed research in Nature’s Scientific Reports on his use of advanced eye-tracking technology to establish that individuals communicating by pointing to letters on a laminated board are not being “cued” by support staff.
- Learn more about I–ASC’s research engagement in advancements for the nonspeaking community.
- Browse an extensive collection of supporting research at United for Communication Choice.
If you feel that proof of principle from users of S2C and their families demonstrates authentication and validity, see what they say regarding using Spelling to Communicate.
Debunking S2C Myth #2: Individuals who spell and type to communicate have nothing original to say, and they parrot the beliefs of their communication partners.
There are many examples in which spellers and typers have expressed opinions that differ from those of their CRPs, such as making choices about treatment options with healthcare providers. Furthermore, many nonspeaking autistics have offered vivid descriptions of synesthesia, a condition in which a person experiences one or more senses as linked, such as seeing colors when hearing music or smelling aromas, even when their CRPs do not have these experiences. They have unique takes on what it feels like to experience apraxia/dyspraxia, a condition that makes it hard for the body to execute motor actions intended by the brain. Danny Whitty describes it very colorfully in this post: I jinxed it. Many nonspeakers write plays, poetry, and other forms of creative expression in which their CRPs have never engaged. In addition to the International Association for Spelling as Communication’s (I-ASC) resources by nonspeakers, Neuroclastic’s Nonspeaker Directory curates a wonderful collection of links to a variety of blogs and other media works by nonspeakers. Click on a few and judge for yourself whether they bring a novel perspective to the world.
Debunking S2C Myth #3: S2C has yet to be proven useful in academic settings.
Debunking this S2C myth is easy if you do research online or on prominent media outlets. Many nonspeaking autistics who spell and type to communicate are pursuing their high school diplomas in public and private schools, online and in person.
An impressive array of institutions of higher learning have already matriculated and awarded degrees to spellers and typers, including:
- The Harvard Extension School
- University of California Berkeley
- University of California Los Angeles
- Tulane University
- Oberlin College
- Rollins College
These graduates are putting the skills they honed in college to good use. Some are going on to pursue careers in advocacy. Rollins College Valedictorian ‘22, Elizabeth Bonker, currently the Executive Director of Communication4ALL.org, has participated in conferences and events on disability and communication rights worldwide.
Hari Srinivasan is a fierce advocate, serving as a board member on the U.S. Department of Health & Human Services Interagency Autism Coordinating Committee. Hari, a Phi Beta Kappa, cum laude, Haas Scholar graduate of the University of California Berkeley, won a fellowship to pursue his doctoral studies in neuroscience at Vanderbilt University.
He still carves out time from his busy schedule to write op-ed pieces on disability rights for such publications as
- Time – Who Autism Research Leaves Out
- Newsweek – A Dual Approach for Autism
- Fortune – Equity of Access Should Never Be Optional
- Psychology Today – Dignity Remains Elusive for Many Disabled People
Debunking S2C Myth #4: Using a CRP prevents individuals from developing independent typing skills.
Many individuals have progressed from using letter boards with a CRP to independent typing. Achieving independent typing skills requires thousands of hours of practice. One typer reports that he can now achieve 60 minutes of independent typing without a break and up to 4 hours in a school day with a break in between. He notes that gaining this level of stamina took over 8 years and more than 3,000 hours of practice. He notes that in some circumstances, he may use an S2C laminate board or keyboard supported by a trained CRP to spell faster and continue communicating after a long school day. This helps him to chat on the go, keep up in classroom discussions, and extend his ability to participate after a long school day.
Several other nonspeakers have asserted that they prefer communicating on a laminate board with a communication partner, as it is faster and more comfortable for them. Nonspeakers are entitled to make their own determinations about how best to communicate. Interestingly, none of the individuals who are now capable of typing independently have disavowed any of the earlier statements they made while supported by a CRP.
Debunking S2C Myth #5: A message-passing test conducted under controlled conditions is the only way to establish an individual’s authentic communication.
In experimental terms, a message-passing test occurs when an individual is told or shown something while the person supporting them is not present. Then, the support person is brought into the room, and the first person is asked to communicate what was shown or told to them. This response could be in the form of pointing to a picture, symbol, or word or typing a word, phrase, or statement.
A message-passing test is ONE of the tools that qualified clinicians MAY use to check for signs of influence and assess the effectiveness of nonspeakers’ communication. Other options include direct observations of individuals’ spelling and typing in extended conversations with evaluators in familiar settings or using more advanced technology, such as highly calibrated eye-tracking systems.
Another source of authentication may be instances of what is referred to as “natural message passing,” in which a speller or typer conveys information unknown to their CRP to a third person who can independently verify it. The only difference from an experimental message passing test is that these are spontaneously occurring situations in everyday life. For example, accounts of natural message passing abound in the context of healthcare. Many instances involve spellers conveying symptoms to healthcare providers that are not visible to the naked eye, causing the providers to administer physical examinations and/or diagnostic tests that have led to the discovery of physical ailments ranging from ear infections to cancer. Given that it has been well documented by researchers that autistic individuals have higher rates of health issues throughout their lives, any methods of communication that allow for nonspeaking autistics to convey their concerns to healthcare providers should not be discouraged but instead encouraged. To learn more about autism health issues, read the “Mortality in Individuals with Autism” study.
Debunking S2C Myth #6: It is dangerous to presume competence. An individual should prove that they are authentically communicating before they are allowed to participate in a public forum (i.e., school, conferences, media interviews, etc.).
The United States legal system presumes adults to be competent unless proven otherwise, which means that unless you believe that nonspeaking individuals do not have the same legal rights as other citizens, they are presumed competent under U.S. law. Parents who wish to retain guardianship beyond their child’s 18th birthday, no matter what a child’s diagnosis – autism, cerebral palsy, intellectual and developmental disabilities, and so on – must petition a court to do so and provide proof that the individual is not competent.
Even if you feel that a speller or typer does need to formally establish authorship and prove that they are conveying their own thoughts and not those of the person supporting them, how many times do they need to do so? Many individuals have undergone rigorous evaluations, only to be repeatedly questioned by detractors who demand a repeated demonstration or an additional one based on their preferred method. What right do they have to make these demands? Would they be so bold as to require repeated demonstrations of competency from nondisabled individuals?
Debunking S2C Myth #7: Using prompts in the early stages of learning to use S2C for communication renders it invalid.
Prompting is a way of helping students learn or use a skill or behavior. Using prompts with a fading hierarchy is part of mainstream education and in many teaching and therapy methods for nonspeaking people. Coaches in every sport and teachers regularly apply physical, gestural, and verbal prompts to help nondisabled people develop the motor skills needed to achieve mastery. Speech and occupational therapists also use prompting in their professional practice.
In the nonspeaking world, prompting is widely used in teaching picture-based alternative and augmentative communication AAC systems such as Picture Exchange Communication System (PECS) and in almost all variants of applied behavior analysis. In this context, it is baffling that detractors find using prompting in learning to communicate via S2C objectionable.
(Note: Although PECS is often accepted as a nonspeaking form of communication by educators, it is very limiting for the nonspeakers. Think of a time you’ve been given a question, and your only possible answer was yes or no. You want to say “maybe” or “yes, but” or ask a clarifying question before responding. It’s incredibly frustrating for someone with full cognition and vocabulary to be this limited.
Debunking S2C Myth #8: Using S2C or related methods to take standardized tests automatically invalidates their results.
To debunk this S2C myth, let’s look at current accommodations widely used in standardized testing. Accommodations for many students with disabilities such as ADHD and dyslexia in standardized testing environments are commonly accepted and considered standard practice. The only requirement is that they provide proof that the student is currently and actively using these accommodations. In addition to computers for typing, students can have someone write what they dictate or fill in the circles on their Scantron; use multiple testing sessions and multiple breaks due to their inability to sustain testing activity because of attention span or physical disability; and the student/family can choose a familiar person to facilitate and read aloud directions and test questions.
Many organizations allow hand-held S2C laminated letter boards and keyboards and the support of a CRP as reasonable accommodations, including
- TASC (Test Assessing Secondary Completion), New York’s Department of Education’s high school equivalency test
- Keystone, Pennsylvania’s Department of Education achievement test
- The American College Testing (better known as ACT), a standardized test used for college admissions in the United States administered by a nonprofit organization
Furthermore, standardized IQ tests, such as those used by many neuropsychologists and school psychologists, allow for accommodations. For example, the WAIS-IV Scoring and Administration Manual states, “Prior to testing an examinee with physical, language, or sensory difficulties, the examiner should become familiar with the examinee’s limitations and preferred mode of communication, both of which may necessitate deviations from standard procedures. Some flexibility may be necessary to balance the needs of the examinee with the need to maintain standard procedure.” Similarly, the Essentials of WISC-IV Testing states: “Clinical judgment must be exercised in determining whether a modification to the test or the impact of the specific impairment prevents the calculation of standard scores.”
Debunking S2C Myth #9: Some individuals have made false or unproven accusations using methods similar to S2C, and therefore, no one who uses any of these methods should be believed.
The sad reality is that disabled people are much more likely to be victims of abuse than to accuse others of abuse falsely. National Public Radio broadcast the results of a year-long investigation, The Sexual Assault Epidemic No One Talks About, into the abuse of disabled people. 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. 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. The greater risk is that nonspeaking people have NO means to report abuse, not that they are likely to make false reports.
It is serious and tragic when false accusations are made, and yes, it is possible that this may have happened in the past with some nonspeaking individuals. But false accusations have also been made by people who used the spoken word to do so. No one assumes that every new person who comes forward is lying because some people have lied or been manipulated in the past. The authorities have a duty to investigate each claim on its own merits. I am not saying that the claims of criminal misconduct by nonspeakers should be taken at face value without corroboration, but I am absolutely saying that they should be given the same weight as claims made in the spoken voice.
Debunking S2C Myth #10: Is S2C valid, or is S2C a “discredited” method that has been “debunked”?
What does it mean to be valid? To be evidence-based?
- According to the Oxford Dictionary, validity is
- the quality of being logically or factually sound, soundness, or cogency. If items 1 to 9 above have not proven S2C valid using this definition, please read this article I previously wrote.
- Or the fact of having legal force or being legally acceptable. Please refer to the ADA and how it relates to communication supports and services. The following statements have been edited for brevity, but you can read the entire text for that section of the act here.
- The ADA states, “In determining what … auxiliary aids and services are necessary, a public entity shall give primary consideration to the requests of individuals with disabilities.”
- “A public entity may not, directly or through contractual or other arrangements, utilize criteria or methods of administration: (ii) That have the purpose or effect of defeating or substantially impairing accomplishment of the objectives of the public entity’s program with respect to individuals with disabilities;”… Nonspeakers who use S2C or typing to communicate are suffering substantial impairment to accomplishing the same education that all children are afforded in the U.S. through their public education program.
- Or the fact of having legal force or being legally acceptable. Please refer to the ADA and how it relates to communication supports and services. The following statements have been edited for brevity, but you can read the entire text for that section of the act here.
- Evidence-based practice, according to the American Speech-Language-Hearing Association, is the integration of
- Clinical expertise/expert opinion – The knowledge, judgment, and critical reasoning acquired through your training and professional experiences. Many S2C Practitioners are registered Speech-language Pathologists, Occupational Therapists, or have degrees in special education, and their support of this method in their professional practice andexperience through their knowledge, judgment, and critical reasoning satisfies this requirement.
- 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) – Examples of external research supporting S2C and related methods are laid out in Debunking Myth 1 above. The I-ASC community works with a global network of interdisciplinary thought leaders in the motor-sensory field using best practices to validate spelling and typing as communication modalities that deliver positive results for nonspeaking people. Their involvement helps set the standards that make this essential evidence-based step possible. Internal evidence has been acquired from many S2C practitioners with clinical and nonclinical backgrounds.
- Client/patient/caregiver perspectives – The unique set of personal and cultural circumstances, values, priorities, and expectations identified by your client and their caregivers. You will see multiple links to examples of this in Debunking S2C Myths 1 to 9.
If this list hasn’t already debunked the myths about S2C for you, there are many, many universities, colleges, government committees, nonprofits, researchers, professors, teachers, doctors, psychologists, occupational therapists, lawyers, and journalists who fully support the idea that spelling and typing, including with the support of a CRP, are valid and effective ways for nonspeaking individuals who prefer it to communicate. A small group of detractors cannot unilaterally declare these methods to be “debunked” in the face of this strong supporting evidence of their effectiveness for many nonspeakers.
About the Author
2 Responses
I am not a parent & haven’t ever known anyone personally with autism, it just wasn’t prevalent when I grew up, I’m 59. I want to express my gratitude & excitement for the work you are doing! I was reminded about The Telepathy Tapes a few days ago & dove in, watched Spellers the Movie, & have found so much information about people, parents, all are heros like you helping non-speakers be heard. I am signing up for your newsletter & am sharing all that I can. I feel so passionate about this. THANK YOU! PEACE & LOVE TO ALL!
I couldn’t be more proud of my sister Jen(the author) and my nephew Alex!