12 June 2018
Dear Board of Directors,
I am responding to the ASHA committee’s conclusions on FC, RPM and other typing forms of alternative communication.
I am Autistic. I am also a music teacher, celebrating 25 years teaching this year, and a parent of an Autistic teen. My non-speaking students learn to play violin, viola, and cello from me acquiring the lifelong skill of playing independently on the instrument. This is not just as a fun therapy; my students actually learn music and learn to play their instruments.
While I was at Agnes Scott College as a Psychology major, I became involved as an Autistic Advocate, voicing my thoughts for the benefit of others. Fifteen years later, we have significantly more evidence to support theories on how the brain works than we did when I started on this path. However, I feel as though I am still having the same discussions over presuming competence, despite the emerging research supporting the idea that those of us with Autism are capable of significantly more.
I encourage you to take a moment to read the emergent truths that research has brought to us because autistic people like me choose to participate in this research for the betterment of Autistic lives. As a violinist, I would much rather spend my time playing my violin, but I choose to participate in research and be a voice because, until very recently, people like me were locked in hospitals. RPM and spelling-to-communicate are advances in thinking brought to us to help free Autistic people from the confines of their inner selves and express not just our physiological needs, but our hopes, dreams, and desires to be a part of a loving world. This is not abuse, it is freeing us from abuse.
If you think we are using these kids as our personal mouthpieces, then you give us way too much credit. In order to create the proposed illusion, a parent, as a speech partner, must create an entire being different from themselves, create different vocabulary, and continue this effort with amazing consistency. I love and appreciate the parents I work with, but none of them are so clever and devious as to pull of a hoax of this magnitude for this long with this level of consistency. In fact, there is more than enough evidence to support the amazing evolution a parent would have to go through to be multiple people and not be recognized immediately by the professionals they encounter on a regular basis.
As a professional or teacher, I would have to maintain not one illusion, but hundreds of illusions with precision. To spend my professional time and creativity developing a hoax or illusion of this magnitude would be a waste of my time. As a professional, I have spent hundreds of hours sharpening my skill as a violinist, a performer, and a music educator. Expanding my teaching base to include students with disabilities, especially those who cannot communicate by traditional oral means, adds a significant workload on me as a teacher. I have had to restructure pedagogy, create new approaches, research multiple communication modalities, and create a balanced physical space to welcome these students in. I gladly take on this responsibility to make music accessible to all students who wish to learn, consistent with my Suzuki Method training of “every child can learn.” All students, no matter their diagnosis, pay the same rate per hour, eliminating financial gain. My motivation is strictly to share the love of music, and I do so successfully even with non-speaking students.
To that extent, as a professional, I would like to note that musical talent occurs at the same rate in my non-speaking Autistic students as with my neurotypical students. Some non-speaking students play with more accuracy than others but they all do so independently, and not because of savant syndrome. Given the hierarchical structure of the brain in regards to musical thinking, it seems to me that a cognitive delay so profound that these students are not able to independently speak using a method such as RPM, then it would stand to reason that they would also be unable to acquire the bilateral, complex skill of playing music on a violin independently. I would be quite the magician if I were inadvertently channeling my musical talent through them.
More importantly, why would I put energy into creating the hoax? We as advocates subject ourselves to constant scrutiny. We expose our deepest and most personal thoughts because we love the world we live in and want to be part of that world. I am Autistic and I have my own voice. I am officially diagnosed and received disability accommodations at Agnes Scott College. I was open about my diagnosis and voiced how it felt to have my sensory system on guard all of the time in very public ways so as to educate my fellow college classmates. I struggle with spoken language and have yet to successfully learn to speak a foreign language despite being raised around one. I was open to my classmates about how language was an issue for me, not in forming words with my mouth but in communicating effectively. To this day, I experience loss of speech when overly stressed, overly stimulated, or tired. Being open about this in a public forum opens me up to scrutiny. To get up everyday, go to school, and subject myself to constant trial and error was my choice. This was so because I was the first openly autistic student at ASC and I felt I could play a part in supporting other Autistic people that want to be better than subminimum wages, housing projects, and juvenile activity groups. In the spirit of eliminating financial gain, it is worth it to mention here that I personally still carry a $20,000 debt from college I cannot seem to payoff. Being open has not given me a nation of unsuspecting minds to rule or money filled pockets. But it has given the next generation a foot in the door.
My fellow Autistic people who use a letterboard subject themselves to this same energy depletion and scrutiny because they are the first. Being open, being the first means we take some pretty big sacrifices beyond the scrutiny and judgement that impact our daily lives and rights as humans. Why would we subject ourselves to all of this? Because the real cruelty is returning to the days when potential was not recognized.
RPM and other systems like it are the conduits that bring the inner intellect to the ears of a mostly verbal world. Similar to sign language for the deaf, the system requires knowledge of how it works and an interpreter for those on the outside. If I were, as a dancer, to learn a dance number and suddenly invite another person to dance with me, the steps would be clumsy and the chemistry off. As people with Autism, our communication partners, our educators, and our therapists must be able to dance with us. We must be able to trust them and see that they presume our competence, cherish our personalities, and avoid shoving us into the pigeon hole of normality. To remove access to this method simply because you do not know how to dance would be as cruel as cutting out the tongue of anyone who sings because we dislike the music.
More research is needed, and on this point we agree. Researcher Dr Vyacheslav Ryabov, in a study published in the journal Mathematics and Physics, found that dolphins can communicate using their own language. These types of discoveries are made because we wish to understand more about dolphins and how nature can help us develop further as humans. I would encourage anyone who wishes to understand the human mind to an even broader depth than we currently know to research non-speaking students and their preferred methods of communication. This issue with RPM and the like should be embraced as an amazing moment of wonder, open minded collaboration, and the next step in the human’s need to be understood.
Thank you for considering my opinion.