What It’s Like & What We *think* We Know
Since our work at I-ASC is informed by subject matter experts – those who are nonspeaking, minimally speaking and unreliably speaking people, we wanted someone who is actually apraxic to describe what this feels like. William was kind enough to share his expertise and experience. We have added what we think we know based on current science and research. The reality is there is still so much to learn – the most important thing is to be open to that learning!
“Having Apraxia feels like a weakening in my neural paths, as if they don’t have the strength to deliver the weighted instructions given by my mind to my body parts.”
Apraxia, or dyspraxia is the medical term used for what our community refers to as the “brain-body disconnect”. It refers to a dysfunction in executing volitional movement, commanded by the motor cortex, even if the same movement can be completed involuntarily, and there is no other physical reason stopping its execution.
There are many types of apraxias, in addition to the ones mentioned below. If you look up these types of apraxias, you may have some “a-ha!” moments. Individuals may exhibit one, some, or all types of apraxias.
“The Motor Cortex receives the information. It cannot get internal instructions to the respective ligaments and muscles in the anatomy.”
The motor cortex looks like a strip in the brain, with segments dedicated to the movement of each body part. It is responsible for the planning, control, and execution of voluntary movements. The brain commands the body right here.
“My heaviest burden is my speech production. Gaining language and having nowhere to lay it down still leaves me heartbroken. I am frustrated all the time because my words are RIGHT THERE. Thank God I found another way to tell you this.”
Those diagnosed with apraxia of speech have expressive language but cannot use speech for output of their thoughts. Some people with apraxia of speech communicate using other body parts, but when combined with other disabilities, especially those affecting the senses, the apraxia is rarely limited to speech.
“My remark that it is limiting to act out one motor command should give you an idea of how difficult it must be to string together a series of actions in a meaningful way to produce a more complicated motor task or activity.”
Ideational Apraxia is the inability to independently coordinate activities with multiple, sequential movements, such as dressing, eating, and bathing, even though isolated steps in these sequences can be physically accomplished.
“Saccadic dysfunction affects everything I do and may have the most impact on how others see me and my abilities. Ocular motor control has more to do with self-regulation than you can imagine.”
Ocular Motor Apraxia is the inability to volitionally initiate saccades. Saccades are the “rapid, ballistic movements of the eyes that abruptly change the point of fixation. They range in amplitude from the small movements made while reading, for example, to the much larger movements made while gazing around a room.”
“Trying new things that are hard is the only treatment for apraxia. It will always be hard if you don’t practice. You have to get out of your old habits and into your ‘motor mindframe’.”
The thing that helps the most is the thing that is hard to do – practice volitional movement! Using principles of neuroplasticity, we can create new neural pathways and strengthen them. The difference between a beginner on letterboards and an advanced and fluent speller is myelination of neural paths through practice. The same thing goes for all other motor skills.
Written by Giorgena Sarantopoulos and William Tziavaras. Giorgena is an S2C Practitioner in Ontario. Her practice is Good Point Communication Partners. William is a grade 6 student. He enjoys being the only nonspeaking autistic AAC user in his regular classroom of neurotypical kids and getting the education he always dreamed of after many years in a segregated intensive support classroom. William has presented on inclusive classrooms, and is often asked to contribute his unique perspective as a consultant on matters such as inclusive education and public spaces, effective implementation of AAC and, very regularly, common misconceptions about nonspeaking autistics.