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Key points
- Access to communication is a fundamental human right.
- Misconceptions about nonspeaking autism can be harmful.
- Spelling to communicate (S2C) can be a powerful tool for nonspeaking autistic people.
- Neurotypicals should presume competence and become helpful communication/regulation partners to nonspeakers.
Trapped in her inner world for 16 years, unable to speak, Nina Meehan describes how it felt: “It was torture…I suffered in silence for my entire life. I have always been locked inside, but no one could hear me.” Nina communicates these feelings by spelling them out, using a method called spelling to communicate (S2C), which enables her to share her story.
Meehan is an autistic nonspeaker who grew up with her parents and two sisters in Fairfield, Connecticut. After multiple doctors told Meehan’s mother, Raquel, that Meehan lacked the cognitive ability to communicate, Raquel lost hope that she would ever be able to connect with her daughter. Raquel laments how the physicians’ messaging detached her emotionally and spiritually from her child. Among the general public and within the medical community, too, there is a common misconception that autistic nonspeakers do not have cognitive ability. This persistent fallacy can lead nonspeakers to lose hope, as well as lose access to an appropriate education that can unlock their deep potential.
Within disability circles, “presuming competence” is an essential mindset. When people are assumed not to understand or be able to learn, our educational and medical systems create barriers that deprive them of dignity and respect. Throughout history, the dominant majority has suppressed the voices of marginalized communities. Individuals who are led to believe that they are cognitively impaired lose faith in the systems designed to support them. When we assume that those without a voice are not verbal, we demean their capability and fail to uncover the intelligence they hold inside. Not only did Meehan know English, but likely due to exposure to her grandmother’s native language, one day, Meehan spelled in Spanish, “I’m bilingual. I know how to speak Spanish, too.”
Due to apraxia, a motor movement disorder, many autistic people cannot demonstrate what they understand. Apraxia is a disconnection between the brain and the body, and autistic people often struggle to get their bodies to do what their minds intend. Nonspeakers cannot show their verbal acuity without the motor skills to convey their intelligence.
When Meehan was younger, she would point at pictures on an iPad, a form of augmentative and alternative communication (AAC) that provides options for one-word prompts. The trouble with many AAC devices is that they are limited to icons and don’t represent natural speech. The devices rely on limited choices that can perpetuate motor loops (getting stuck on one icon or word) that may not reflect what the person really wants to say.
Caroline Mazza is a physical therapist who has been working with neurodivergent clients for over 20 years. She has a customized brain-based approach and has worked with Meehan for the past few years. Mazza created a treatment plan for Meehan that addresses her posture, ocular-motor skills, and balance. Core strength, motor planning, and nervous system regulation are all necessary to spell one’s thoughts using the letterboard.
As motor skills improve, the goal is to progress to independent typing. Meehan, now 18, has been practicing her spelling for the last two years with the support of her family and the professionals around her, and she takes typing lessons three times a week. In Meehan’s words, “Through spelling, I can participate in my own life and decisions. It feels like I am being reborn.” She wants others to know that they can do this, too, with motor skill practice and the gift of neuroplasticity.
As Meehan’s mother, Raquel, shares, “The depth of who she is is so moving. It’s a different life now. It’s reaffirmed my faith and kept my dreams alive…It’s like meeting her for the first time.” What surprised her most about Meehan is that she is a deep thinker and cares about “every single thing.”
Meehan’s older sister, Natalia, has been training in S2C and is a communication partner (CP) for Meehan. Natalia always knew that Meehan could read and understand, and it was painful to watch her sister’s frustrations as they grew up. Now that Meehan can spell, it turns out that she and Natalia share a passion for helping people through healing modalities such as plants. “She had so much information about plants that I didn’t know,” says Natalia. Natalia and Meehan are building an apothecary for the sisters to run together, and they look forward to using herbs and plants to heal others.
Facilitated communication (FC) has been hotly debated in the disability world. Some studies have indicated the effectiveness of FC is attributable to facilitator bias. FC usually involves a communication partner physically supporting the child at the hand, wrist, arm, or shoulder while the child types or points to a letterboard. The concern amongst skeptics is that the facilitator is the one conveying their own thoughts. Rapid prompting method (RPM) and S2C, however, differ from FC in that the facilitators do not typically support the child’s hand or arm and instead hold or move a letterboard.
Spelling to communicate teaches individuals with motor challenges the purposeful motor skills necessary to point to letters as a means of communication. The goal is to achieve synchrony between cognition and motor. Skilled and rigorously trained communication partners teach purposeful motor skills using a hierarchy of verbal and gestural prompts, never influencing the content of the speller’s message. The 2023 documentary Spellers shows the process of S2C in action.
Her mother states that before S2C, no speech therapist had taken Meehan’s motor abilities into account. This blind spot is frequently encountered, even though autistic individuals often rely on support to help with sensory, motor, attention, and self-regulatory needs.
The American Speech-Language-Hearing Association (ASHA), which certifies and sets the standards for speech and language pathologists, wrote a position statement in 2018 warning against the use of the RPM and S2C, claiming a lack of scientific validity. This is an emerging field, and having sufficient research means having the necessary interest from the public and funding from large institutions.
Regarding the efficacy and integrity of S2C, a recent study (Jaswal et al., 2020) used head-mounted eye-tracking to show communicative intent in their research subjects. The device measured how quickly and accurately the subjects looked at and then pointed to letters. “Our data suggest that participants actively generated their own text, fixating and pointing to letters they selected themselves.”
United for Communication Choice, an organization made up of individuals with disabilities, their families, and allies, calls ASHA’s position “flawed and dangerous.” They consider access to preferred communication essential to “dignity, education, inclusion, independence, and self-determination.” Gabriele Nicolet, speech therapist and family communication coach, says, “In ASHA’s own language, evidence-based practice includes the inclusion of people’s clinical and lived experiences. To deny someone’s lived experience and call it a hoax is the opposite of what that organization stands for. It’s abhorrent.”
Recently, Meehan met another local speller named Wynston. They started hanging out, and Wynston asked her to be his Valentine. They are forming a deep and loving emotional connection. Through spelling, they can fully express their feelings for each other, and they hope that other spellers out there know that they can build meaningful relationships, too.
Meehan is on a mission to liberate nonspeakers from being silenced. She wants to create a school where spellers thrive. She is asking for neurotypicals to see what nonspeakers are capable of and give them the chance to have meaningful opportunities in society. She has created The Nina Foundation to educate the world about autism and raise awareness about autistic people’s ability to comprehend the world around them. According to Meehan, “There is a revolution happening through unlocking the voices of all nonspeakers.”
References
Jaswal, V.K., Wayne, A. & Golino, H. Eye-tracking reveals agency in assisted autistic communication. Sci Rep 10, 7882 (2020). https://doi.org/10.1038/s41598-020-64553-9
