Estimated reading time: 6 minutes
April was Autism Awareness Month, but how can we be aware of something we don’t fully understand? What assumptions have we made about autism that have since been proven to be wrong or harmful?
As a sibling of an autistic non-speaker, I can attest to their wealth of untapped potential that a neurotypical world doesn’t acknowledge or understand. As a society, we have been led to believe that they are neither capable nor intelligent. I’m ashamed to admit I felt the same way. To some degree, I didn’t believe in my sister’s strengths until she had access to a medium to prove them in a way we neurotypical people can understand.
In 2022, my older sister Siri started learning how to communicate using a letter board. My mother – whom I liken to having the resolve of a superhero, has always tried out different activities with my sister. Boxing, speech therapy, equine therapy, music classes, the list is endless. So when she told me about the letter board, I was somewhat dismissive, offering the same reaction that I would to being told Siri had started painting. But my mom continued, describing how Siri could answer questions about Benjamin Franklin by pointing to letters on a stencil, and my entire understanding of Siri shifted.
The Letter Board
Non-speakers don’t experience an intellectual disconnect but a physical one, called apraxia. Put simply, it is the difficulty with performing purposeful, skilled movements even when one has the ability and desire to execute them. Apraxia leads society to believe that nonspeakers’ physical inabilities to perform tasks reflect an intellectual shortcoming, which is not the case.
For instance, Siri is so much more knowledgeable than anybody gave her credit for before she started using the letter board; she understands Sanskrit, Hindi, Telugu, Tamil, Spanish, and Vietnamese, but we used to think she didn’t even understand English!
Her not being able to speak reliably, her struggles to communicate over text, and her repeating what other people say to her can all be explained by apraxia. It’s not that she doesn’t know any better; she can’t get her body to listen to her. Learning how to use the letter board allows non-speakers to practice purposeful motor skills while offering a means of communication.
With this new knowledge, I actively changed how I interacted with Siri. Knowing she completely understands everything we say, I communicated with and treated her like I would any other adult. I would make it a point to greet her. Instead of talking about her, I’d address her directly to include her in conversations. I wanted her to know that I see her intelligence and that I refused to be yet another neurotypical person who assumes she doesn’t understand anything.
Becoming a Communication Regulation Partner
Once Siri could communicate through the letter board, she told my mom that she wanted to go to medical school and study neuroscience. My mom reached out to the community college, and everything was set to change again.
I was nearing the end of my final semester at college, and my mom encouraged me to become a Communication Regulation Partner (CRP), someone who uses and teaches letter board communication to nonspeakers and their families. Having just graduated with a Bachelor’s Degree in Psychology, I jumped at the opportunity to get closer to my sister and work in a field I had always been interested in.
I enrolled in a letter board communication training course through the International Association for Spelling as Communication (I-ASC), where I learned about autism, apraxia, and letter board communication. It became apparent to me that using a letter board to communicate is so much more complex than it may seem to most people. It’s not as simple as holding up a letter board and waiting for your student to poke letters. It takes time and dedication to understand your student’s unique motor and regulation needs. As 2024 progressed, I had become more skilled at using the letter board with non-speakers, including Siri.
Being a CRP is a great fit for me. I have the privilege of giving a voice to those who have not yet had one. Throughout the span of about 9 months, I worked with various non-speakers, but would most routinely and consistently work with my sister. I would read her lessons written by myself or other CRPs, and ask her questions about the material.
A Big Sister
Generally, within a lesson, the questions start easy and get more complex as your speller’s motor skills progress. For example, in a lesson about butterflies, an early-on question might be “what is this lesson about?”, and the speller would spell out “BUTTERFLIES” on the letter board by pointing out each letter. Then, the CRP would work their way up to asking more open-ended questions like “what themes in life can butterflies represent?”
Slowly, but surely, over the year, Siri and I progressed in our communication to the point that we could be open with each other. I’ll never forget when she spelled “I love you Kiran” while I was holding the letter board. I melted into a puddle of tears.
I had just realized that I could actually talk with my sister. I was now able to confide in her in ways that she had been longing to have her younger sibling to do for all her life. I finally had a big sister. A big sister who is bold, mischievous, sensitive, protective, and so much more than the rigid definitions that society imposes on non-speakers like her.
A Helping Hand For Schoolwork
A few weeks later, my mom called me and frantically told me that the CRP who was helping my sister with her college classes had suddenly quit. With midterms coming up, Siri needed a new CRP, and soon. When she asked my brother (who was also training to be a CRP) and me if we could help, I said yes. The confidence to do so had come from Siri herself and the hours I spent practicing with her.
Signing up for classes, keeping up with homework, and keeping myself updated with the class material are just some of the challenges unique to helping Siri in school. But it has brought us so much closer together. Through the letter board, I can ask my sister how she’s doing, how she feels about her classes, and what she wants for lunch. The letter board provides me a medium to communicate with Siri, but I also have to step outside myself to show up for her. I had to prove to my sister that she deserves the support she seeks and can rely on me. I wasn’t very active in Siri’s life growing up, but things are different now.
This isn’t to say that all of autism’s difficulties and challenges go away as soon as you introduce the letter board. Siri still struggles with her body not cooperating with her. She still needs support in her daily routine and activities. But she now has the voice to help us help her. She can advocate for herself when we inevitably mess up. She can prove to the world that she is intelligent and capable. And it is my honor to be by her side.
Learn more about Siri and her family’s journey through the Emmy-nominated documentary “My Name Is Siri”. We interviewed the filmmakers, Siri’s mother Swathi, and Siri last year! Follow Siri on Instagram, YouTube and Facebook.