How do I begin such a topic when those reading have a completely different experience in navigating their bodies through this existence?
Imagine knowing exactly what you want to say, but the words don’t make it from your brain to your lips. You know how you want to move, but your body fails to comply. You’re thirsty, but your hand refuses to reach for your cup. You see the traffic but can’t stop your feet. It’s what I refer to as a brain-body disconnect. My brain knows what I want to do, say or stop doing, but my body doesn’t usually comply.
This is the reality of millions of non-, unreliable and minimal speakers living with autism. This is the reality of living with something called full-body apraxia, a term I hadn’t heard until recently, despite my 30 years of being diagnosed with this and or that disorder. But apraxia perfectly sums up my lifelong struggles.
Apraxia is a neurological condition that affects an individual’s ability to plan and carry out intentional movements, even though the physical ability and desire to complete the action are present. It’s a disorder that can very easily deceive onlookers into believing the individual lacks an understanding of the most basic concepts of danger or human emotion, or that they fail to comprehend the simplest instructions or are choosing not to comply.
Most well-meaning autism professionals are creating and implementing therapies based on these inaccurate and dangerous assumptions: the assumption that their student’s inability to complete their assigned tasks are due to either a behavioral or cognitive impairment. This is despite the fact that many of us have the correct diagnosis of motor planning and/or sensory processing disorder. Many treatment providers fail to recognize how these motor and sensory differences might manifest when implementing hours of behavior training or when assessing our cognitive abilities.
These dangerous assumptions lead to children with autism enduring hours of dehumanizing and, at times, abusive therapies. And these assumptions rob us of our right to receive an adequate education and limit our access to and acceptance of alternative therapies. We are burdened with the impossible task of proving our intelligence with bodies that are not fully connected to the intentions and instructions of our brains, with bodies that not only fail to move how we want, but in many cases, take over and do what they want.
Often instead of what I intend, my body will say what it wants, point where it wants and complete loops that I have little to no control over. Because educators and treatment providers fail to understand this, our basic human rights are withheld until we are able to prove our intelligence, emotional awareness and worth. We are often not treated with dignity until we can prove that our outward appearances and actions are not a true reflection of our minds and hearts.
I was a victim of those dangerous assumptions for 30 long years. Educators and doctors repeatedly told my parents that I had the intelligence of a 4-year old, and I was relegated to living out my days in a windowless warehouse called a day program. These are programs designed to house those who society believes don’t know, understand or feel enough to recognize the inhumanity of the system in which they exist. This system holds overwhelmed families hostage, forcing them into accepting only their approved options. The experts running these systems are blind to our needs, and often dismiss parent questions and concerns, treating them as if they are unfamiliar with their own children.
That was my life, a lesson in patience and surrender. I was resigned to accept my bleak and uncertain future until my family learned about spelling to communicate. This is a motor-based communication method that understood that my inability to communicate was due to a motor challenge rather than a cognitive one. It’s a therapy designed to support my regulation and my body movement, and has taught me how to override my body’s automatic actions and create new ones. It taught me how to coordinate my eyes with my hand in order to accurately point to letters on a letterboard to spell my thoughts. It’s a therapy that, within a year, had changed my life beyond recognition. It was no easy task.
If my family would have taken my behavior as communication, which is common when you have nothing else to rely on, we wouldn’t have made it past the first few sessions. My body rebelled. The prospect of finally being able to communicate overwhelmed my system with excitement. I spent the first several months screaming and shaking uncontrollably, but with the skilled guidance and quiet determination of my practitioner, I slowly progressed from one large letter being exposed to all 26, from answering questions with only one possible response to spelling my thoughts. It’s been a long journey but worth every moment. I’m now able to express my love for my family and my dreams and desires. And I can give my family strategies for helping me. This seemingly simple method of communication has changed everything about my life.
I’m writing this article, pointing one letter at a time to my letterboard in the hopes of reaching the parents of nonspeaking autistics and the professionals supporting them. I am asking you to put aside everything you’ve been taught about your autistic child or student, everything you’ve been told or think you know, and imagine you might be wrong. Imagine they are in there, understanding everything but unable to show it. There is a growing community of parents, therapists and teachers who have discovered just that. They are uncovering what decades of experts have missed. Everything about my life changed when I was given a reliable means of communication. I am sharing my story because I am able to. I am one of the lucky few who have been freed from my prison of silence.