Having friends like Damon is a blessing. While we have only met in person once, briefly, love and appreciation for each other engraved that moment in me forever.
Cool and brilliant Damon, take is away…
I would like to thank my friend Jordyn Pallett for proposing I write a post on his most excellent blog. I am honoured to have been asked.
My name is Damon Kirsebom, and I am an 18-year-old guy who types in order to communicate his thoughts. I began on a letterboard three years ago, and have realized my dream of participating in decisions which affect my life. It doesn’t seem much to ask, yet, for 14 ½ years I was unable to express even the most basic thought.
As Jordyn has so eloquently explained, many non-speaking or unreliably speaking autistics must overcome tremendous challenges in order to move as they intend. I am no exception. Even my mouth has little connection with what I would like to say. In my years of intensive therapies, I was prompted to learn scripts which were meant to facilitate social interactions. For example, I am embarrassed, at my age, to be unable to prevent myself from loudly repeating, “The little pool is fun”. This occurs every Thursday, as I used to go to the pool with classmates every Friday. The thing is, these words were practiced to “mastery,” and this neurological pathway has become difficult to extinguish. Being unable to stop myself from repeating such scripts is humiliating. Most people believe my speech is intentional, and make assumptions about my intelligence.
Lack of movement control is what I would say is the core of my type of autism. In spite of this, I am an athletic person. I have learned to overcome many impulsive motions in order to build more intentional movements. For example, I learned to ride a bike when I was five, which is probably pretty average for any kid. I know that some professionals who speak out against people who communicate as I do would see my bicycling ability as proof that I do not have movement challenges. I disagree. My dad taught me to steer and pedal for years prior to my first solo ride. What many critics do not understand is the difference between novel, intentional motions, and movements that have become automatic through repetition—and are sometimes performed impulsively. Further, being unable to perform an action is not necessarily due to lack of desire, or lack of understanding. As Jordyn has stated, slowing down practice of novel movements leads to greater control of intentional motions overall.
Probably the biggest misconception about people like me is the idea that intelligence can be measured in the same ways that were developed for people who speak, and who do not have movement challenges. These movement differences are confused with lack of understanding. For example, in my therapies as a child, I could not advance unless I could demonstrate my knowledge trial after trial. People were confused by my impulsive movements. When I would master a skill, I was thought to have finally grasped the concept, rather than the truth: my body finally learned to respond correctly to a task my mind understood the first time. These days, typing enables me to demonstrate my abilities in academic subjects. I am limited only by people who make assumptions about me without having met me.
I share these thoughts with the hope that I will make a difference. Going forward, I intend to advocate with and for people who use spelling or typing to express their thoughts. I am grateful to the many people who stand with us, despite the criticism. As technology advances, I look forward to the time when my thoughts will spill out on command as I think them. In the meantime, I will happily type my words.
Hope you love Damon’s sharing as much as I do. Please give this bloody, and mighty, intelligent dude some shouts out.