Some people want to know the “research” or “science” behind spelling on a letterboard for communication.
To us, Luke’s voice is enough.
It’s heart-breaking to know there are skeptics and disbelievers who seem to think Madison is manipulating or influencing Luke’s spelling. She has 50+ clients, and I think it would be exhaustingly creative for her to “make up words / poems / stories” for each one of them. Sigh. When Luke heard about this and even experienced the skepticism (dare we say discrimination?), he became quite frustrated and ranted that he was “SO ANGRY”; so much so that he wanted to quit advocating. He is tired of having to “PROVE MY VOICE IS MINE”.
We invite anyone to come and have a conversation with Luke. We have invited MANY people to have a conversation, yet they haven’t. When you see him spell in person, you will believe. There is no doubt. And we have to pay $100/hour to have Luke “prove his voice” again, and again, with different audiences. Often one person at a time. Sigh.
When people ask me about the “science”, I am inwardly crushed. I think to myself: How much did science really do for Luke? The psychologist who diagnosed Luke when he was little, and the psychologist who performed a “Psych-Ed” assessment at age 16 both provided a label that impacted Luke’s education and how he was treated. Their science literally traumatized Luke.
No doctor, neurologist, pediatrician, psychologist, speech and language pathologist (SLP), occupational therapist (OT), physiotherapist (PT), and all the other “science” professions along Luke’s early journey EVER said the word “apraxia” or “dyspraxia” to us. Why did no one consider or investigate the possibility that Luke was struggling with a brain-to-body disconnect?
And if they didn’t know, I get that. But now that they have an opportunity to learn by seeing / hearing / watching Luke... they have a responsibility to understand and change. There is a mantra in the Spelling community that should now be applied: Know Better. Do Better.
Again we extend the invitation: Luke and I would love to have a progressive conversation with any “science” professional who is open-minded, curious, and willing to learn about this new revolutionary communication tool. We need change in the diagnosing system. We need change in the psychological education assessments. We need change in the school systems. Luke fell through a HUGE crack in the system. Let’s all acknowledge this crack, fill it/correct it for others like Luke. Together, let’s make change happen.
I do begrudgingly get it, though. In order for us to create change, people need science (sigh).
We have to provide the research.
There IS research.
Fortunately we do have scientists within our Speller’s community.
Soma Mukhopadhyay (Master’s in Chemistry and a Bachelor’s Degree in Education). She created the original spelling on a letterboard program, and was successful in reaching her autistic son.
Elizabeth Vosseller of i-asc.org was an SLP.
Dana Johnson of spellers.com is an OT.
Dr. Diwakar Krishnamurthy, PhD, PEng, is a Professor of Electrical and Computer Engineering at the University of Calgary, and is a father of a non-speaking Speller.
Dr. Vikram Jaswal (B.A. in psychology from Columbia University; MSc in neuroscience from the University of Edinburgh; M.A. in psychology and PhD in developmental psychology from Stanford University) is based out of the Department of Psychology at the University of Virginia.
Together, Krishnamurthy and Jaswal and their team have proven that our kids are “in there”, and are “smart”. They have collected data, written research papers, and have done many presentations. They are spending their lives, time, and efforts on providing the science.
So for all those who are super skeptical, and need “science/research”, we have created a new page on Luke’s website titled “Research”. If you are a non-believer, or on-the-fence, or “need science”, take a look and read the research articles, and please watch the video below.
The science to support Spelling for Communication is here, and it will continue to gain strength.
You will continue to hear about this as more research is being done, and as our revolution of non-speaking voices of Spellers becomes greater and greater in number; louder and stronger.
At one point reporter Adam Donnelly of CFJC-TV asked Luke what he has to say about the “haters”... Luke spelled: “WHY ARE THEY SO THREATENED BY MY VOICE?”
EXCERPT FROM THE VIDEO ABOVE:
“So as you may know there are critics who insist that non-speaking individuals who communicate in the way you just saw [spelling on a letterboard] could not possibly be conveying their own thoughts. They think that the assistant is somehow cueing the user to particular letters or moving the letterboard under their finger in some kind of a ouija-board-like fashion. I think what this position reflects is disbelief, that someone who cannot communicate effectively using speech, who is autistic, who moves in unusual ways, who may act in socially non-normative ways, could have sophisticated thoughts... . I think it also suggests that the critics haven’t actually had the opportunity to spend much time with non-speaking autistic folks who spell. Unfortunately, however, the critics have succeeded in preventing non-speaking autistic people from having access to this and related methods in schools and other settings. The non-speaking folks that I know ... are absolutely aware of these critics and they’re absolutely aware that their communicative agency has been questioned or denied. And it’s taken an incredible mental toll on them. Imagine being denied access to the only effective means of communication you have. Not being supported in school to use it, and having no way to participate or gain an education. And all this because a small but strangely influential group of people who’ve never met, or interacted with you, has decided that you could not possibly be conveying your own thoughts.”
—Dr. Vikram Jaswal