With Spencer Austin
How can I begin such a topic when those reading have a completely different experience navigating their bodies in this existence?
Imagine you know 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 won’t comply. You are thirsty, but your hand refuses to grasp your cup. You see the movement but you can’t stop your feet. It’s what I refer to as the brain-body disconnect. My brain knows what I want to do, say or stop doing, but my body usually doesn’t 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 whole-body apraxia, a term I hadn’t heard until recently, despite being diagnosed with this or that disorder for 30 years. But inaction sums up my lifelong struggles perfectly.
Apraxia is a neurological condition that affects a person’s ability to plan and execute purposeful movements, even though the physical ability and desire to complete the action is present. It is a disorder that can very easily mislead onlookers into believing that the person does not understand the most basic concepts of danger or human emotion, or that they fail to understand the simplest of instructions, or that they choose not to comply.
Most well-intentioned autism professionals create and implement treatments based on these inaccurate and dangerous assumptions: the assumption that their student’s inability to complete assigned tasks is due to either behavioral or cognitive impairment. This is despite the fact that many of us are correctly diagnosed with motor planning and/or sensory processing disorder. Many treatment providers fail to recognize how these motor and sensory differences may manifest when implementing behavioral training hours or when assessing our cognitive abilities.
These dangerous assumptions lead children with autism to endure hours of dehumanizing and at times abusive treatments. And these assumptions rob us of our right to receive adequate education and limit our access to and acceptance of alternative treatments. 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, bodies that not only do not move as we want, but in many cases take over and do what we want. Often, instead of what I intend, my body will say what it wants, mark 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 can 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 mind and heart.
I was a victim of these dangerous affairs for 30 whole years. My parents were repeatedly told by teachers and doctors that I had the intelligence of a 4-year-old and 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 do not know, understand or feel enough to recognize the inhumanity of the system in which they exist. This system holds devastated families hostage, forcing them to accept only their approved options. The specialists who manage these systems are blind to our needs and often dismiss parents’ questions and concerns, treating them as if they are unfamiliar with their own children.
This 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 mobility-based method of communication that understood that my inability to communicate was due to a motor challenge rather than a cognitive one. It is a therapy designed to support my body’s regulation and movement and has taught me how to override my body’s automatic actions and create new ones. He taught me how to coordinate my eyes with my hand to accurately point to the letters in a letter to write my thoughts. It is a treatment that, within a year, changed my life beyond recognition. It was not an easy task.
If my family had taken my behavior as communication, which is common when you have nothing else to rely on, we would not have made it through the first few sessions. My body rebelled. The prospect of finally being able to communicate flooded my system with excitement. I spent the first several months screaming and shaking uncontrollably, but with the skillful guidance and calm determination of my intern, I slowly progressed from a large letter exposed to all 26, from answering questions with only one possible answer to writing down my thoughts. It’s been a long journey but worth every moment. Now I can express my love for my family and my dreams and desires. And I can give my family strategies to help me. This seemingly simple method of communication has changed everything in my life.
I am writing this article one letter at a time on my letterhead in hopes of reaching non-speaking autistic parents and support professionals. I’m 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 that you could be wrong. Imagine that they are in there, they understand everything but they can’t show it. There is a growing community of parents, therapists and teachers who have discovered just that. They reveal what decades of experts have missed. Everything in my life changed when I was given a reliable means of communication. I share my story because I can. I am one of the lucky few who have been released from my prison of silence.
Sources for more information:
The International Association for Spelling as Communication
Rollins College Valedictorian Speech by Elizabeth Bonker
“The Anatomy of Autism” by Diego Pena
“The Spellers Guidebook: Practical Advice for Parents and Students” by Dawnmarie Gaivan and Dana Johnson
“Underrated: A Miracle for Autism” by JB Handley and Jamison Handley
Spencer Austin is a 33-year-old non-speaker with autism who lives in Ojai and has been talking about communication for two and a half years. He welcomes anyone interested in spelling to contact him to attend one of his spelling sessions. You can reach him at spencer.s2c@gmail.com.
This article first appeared on California Health Report and is republished here under a Creative Commons Attribution-NoDerivatives 4.0 International License.
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Previously Posted at calhealthreport.org with Creative Commons license
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The post Breakdown: What it’s like to have non-verbal autism and what helped me appeared first on The Good Men Project.
