In my dreams I am a hockey player. I am drafted by a professional team. I play with my brother on the top line; and our team, the Vancouver Canucks, wins the Stanley Cup.
Understand, this is only a dream.
The reality is, I am autistic, and mostly non-speaking. I am also diagnosed with severe apraxia. Apraxia is a neurological condition in which the affected person has impaired ability to execute skilled movements and gestures, despite having the desire to perform them. One might have difficulty or an inability to make facial expressions; have difficulty coordinating multiple-step activities, such as bathing one’s self; and the inability to make the desired response to a verbal command. Another type of apraxia can also result in difficulty coordinating movement of the mouth in order to speak. Also, one might have challenges with starting actions, switching to a different action, and stopping actions.
This means that you when you observe me, you might notice, for example:
- I have difficulty performing novel actions.
- Imitation of movement is very challenging.
- I require a very long time (even four or five minutes) in order to prompt my own body to begin a movement if I do not have an automatic motor plan previously established.
- I sometimes need prompting to start moving, even though I understand what to do.
- I lose control of my arms when they are outside my field of vision (lifting weights overhead, for example).
- I walk with an awkward gait, and prefer to hold on to the shoulder of whoever I am walking with, in order to keep pace.
- I have difficulty with fine-motor activities, such as drawing and writing.
- I have difficulty balancing when I am standing still, so I adjust my feet constantly when standing in place.
- I lose control of my mouth, and can’t stop myself from repeating words and phrases out of context.
- I understand directions, but my body can’t always move as I intend.
- There are times when I cannot stop an action, such as repeatedly flushing the toilet
Another issue that prevents me from moving with intention is movements which have become automatic, through repetition. For example, when I first began spelling, I would begin to point out the letters to spell “manage,” and would get stuck spelling another word, like “make.” This is because, in school, I had practiced typing sight words so many times, I couldn’t break out of the pattern my hand had learned to follow. When this occurs, I am aware that my movements are wrong, and this leads to so much frustration and misunderstanding.
Impulsive actions, such as taking food from other people’s plates, or suddenly jumping sideways down a crowded hallway, is another challenge I contend with. I absolutely understand such situations, but cannot always override my motor impulses.
Not having body control makes people think my unintended movements are volitional, and intended. The truth is that my body cannot always coordinate with my mind. There is, in fact, a significant body of research which has demonstrated that many autistic people have similar movement challenges to the ones I have described.
When my body movements were assessed, the examiners were quite excited to work with me. While I presented much like the non-speaking autistic people with whom they were familiar, I was able to explain my challenges. For example, when I was unable to perform a novel action, I asked the assessors to physically help me (slowly) so that I could build a motor plan. They were surprised that, once I had the feel of the motion, I could learn some of the novel action, right then and there.
While I might never win a Stanley Cup as a hockey player, I have managed to greatly overcome many of my movement challenges. Because my family became aware of my difficulties, they made sure to help me gain greater motor control by daring to teach me to downhill ski, drive an ATV, and to ride technical trails on my mountain bike. Now, I would like you to understand that I still have my awkward postures and movements; however, I have realized a significant improvement in my ability to control my body. I also constantly challenge myself to learn novel skills, such as painting; and I am desperately trying to gain control of my mouth in order to speak. This persistence, in turn, has translated to greater independence in my ability to type out my thoughts.
Bound by this unwieldy body, I struggle to type each precious word. I love knowing that people read my words; and hope that great realizations will occur, simply because I have shared my experiences.
Thanks so much for reading!
Damon Kirsebom is an autistic advocate who types in order to communicate his thoughts. In line with the United Nations’ Universal Declaration of Human Rights, Damon is dedicated to eliminating barriers to communication and inclusion, so all people can participate fully in our society. He is a member of Spellers and Allies, and has also shared his perspective with educators, medical professionals and government representatives. You can follow him on Instagram, @damonkirsebom