They say if you’ve met one person with autism…then you’ve met one person with autism. It turns out that when they also have apraxia, you didn’t meet them the first time.
Apraxia is a disconnect between the brain and body. The brain of a person with apraxia does not have instinctive control over everything their body does. From whole-body movements like sitting down to the finest of motor skills, speech, the body of someone with apraxia acts regardless of the desires in their brain.
Apraxia occurs at the synaptic level but manifests outwardly in what lay people might recognize as autistic behaviors: erratic body movements, vocalizing at inappropriate times, repeating phrases, or any seeming overreaction to stimulation around them like crowds, lights, and noises. Behaviors that, compared to a neurotypical person, might be considered immaturity and incompetence.
Because of apraxia, these behaviors are sometimes the exact opposite of what the brain wants from the body. I heard a story of someone screaming and slapping their caregiver when they arrived some place, but it was found out that the individual was excited to be there. Often, the body with apraxia moves toward everywhere but the brain’s goal. Apraxia is a formidable barrier to intentional movements and therefore, to live life on one’s own terms.
Through faith, ingenuity, and advocacy, supporters of people with apraxia are discovering that their loved ones have been intellectually adept their whole life, trapped inside their body. These nonverbal people had learned to read, watched and remembered everything, did what they could to communicate their inner feelings and intelligence, and listened—even when their body covered their ears or spoke over others.
Because their bodies behaved as children without self-control, we assumed unintelligence or a refusal to cooperate. But it was their bodies which were non-compliant. We know this because, now, some people with apraxia are learning to spell out their authentic thoughts.
They don’t spell by saying the letters or typing or texting them. They are learning how to focus their body to point—letter by letter—to a stencil board of the alphabet. Something about this gross motor skill, intentional whole-body movement, and the desire to communicate what they’ve never before been able to enables them to override their non-compliant bodies, for at least as long as it takes to spell a word.
Spelling through apraxia has been life-changing for people around the world. They can finally speak for themselves! And it’s transformed my approach to supporting people with disabilities.
I used to condescend to people with disabilities: spoke to them as if they were children and, assuming they could not understand me, infantilized my instruction and even made them the butt of a joke. I regret these years of patronizing and grieve their wasted years of too-simple education to people with apraxia. But we couldn’t have known better.
But now we do.
The golden rule in this new age of disability support is to assume competence. So, begin to treat adults with disabilities as you do adults without disabilities—and the same for children. Know that what’s happening with their body may not reflect what they want to be doing.
Visit the International Association for Spelling as Communication (I-ASC.org) for more information and resources.
– Scot Bellavia