This piece was my contribution to the I Can Network Humans on the Autism Spectrum Project

http://icannetwork.com/humans2017

 

Tim Chan                                                                                           

April 2017       

 

Believe me, life can be a monumental struggle when you can’t speak, not even to make a simple request for your most basic needs. Severe autism has rendered me, among other challenges, without a voice. With an intensive learning program starting at 2 years of age, I have made certain progress. The way I learn was to imbibe what was presented to me as if by osmosis. I took everything in, and needed time to digest and make sense of things, but, even after years of discrete trial learning, speech therapy, occupational therapy, as well as other methods in the armamentarium of autism treatment and education, I have not been able to communicate using my own voice or other independent means (I also have dyspraxia, severely curtailing speech and writing ability).

I have a vivid memory of an occasion in Grade 3 in the school psychologist’s office. She was checking my responses on an assessment done a couple of weeks prior, and without any hint of emotions, told Mum that I was severely autistic and intellectually disabled. What I felt then would more than make up for the psychologist’s lack of emotions.  It was anger. No, it was rage, but also, a suffocating sadness. Although I have always known that I was different, I felt my world disintegrating with her verdict, guilty, and the sentence, would never amount to anything. Being labeled and dismissed was especially painful because of all the work that I had put into the remediation and intervention programs with the hope of getting better. In many people’s eyes, speech equates intelligence. By fixing me with a label, the psychologist dismissed me as a lesser human being. All this was done right in front of me, it was as if I was unable to understand anything she said, or lack the capacity to understand anything of importance, all because I did not speak and failed tests that were designed for kids with speech. 

 

However, not long after the psychologist’s visit, I learned to communicate by typing with support, at the DEAL Communication Centre (later renamed the Anne McDonald Communication Center).  I will never forget the first meeting with Rosemary Crossley, the director who had made such an enormous contribution to bringing viable means of augmentative and alternative communication (AAC) to those with little or no functional speech.  With her hand under my wrist, I learned to type by moving my index finger on the keyboard, thoughts I had never been able to express until that moment. In the space of but an hour, I answered some questions and wrote a little story. Nothing spectacular, about Big Bird and Grover, another day on Sesame Street, but it was the first time I was able to use my own words to create a story. That simple communicative act, a thing most people take for granted, was, for me, like reaching the summit of Mt. Everest, a milestone. I found my voice, what exhilaration and power.

Typing under Rosemary’s facilitation and tutelage was by no means easy. The spirit to communicate was strong, but my recalcitrant body was unwilling, just like a wild horse that bucked, kicked and tried its best to throw off an inexperienced rider, me. Rosemary’s support was fine but my right arm felt like lead, and moving my index finger across the keyboard required total concentration and excruciating effort. I felt tense and overloaded, was completely drained after the session. However, the incentive for honing this exciting new skill was clear-cut. With the uncompromising face of the psychologist still fresh in my mind, I was going to bust my guts to prove that she was wrong about me.

 

The opportunity for a means to communicate was the ticket for me to freedom of self-expression, but it was hard going. Held in the stranglehold of an errant body that just refused to obey my mental instructions, I could only think of the vivid image of a diving suit. I had read The Diving Bell and the Butterfly, written by blinking his left eye by author Jean Dominique Bauby. Bauby suffered from the Locked-in Syndrome after a massive stroke with his left eye as the only part of his body under voluntary control. I strongly identified with his comparison of his paralyzed body to a deep sea diving suit, that is, a cumbersome body which did not obey his intentions or will is like one kind of suit used for underwater work. To withstand the pressure of the ocean depths, this suit is made of steel and weighs over 120 kilograms. Even after intensive training and effort, moving in the diving suit under water is extremely slow and lacking in precision.  Over the years, I have tried in different ways to make my body more amenable, and can certainly attest to the strength of mind and will that goes into learning to drive your body in a direction that it never registers.  Mum and I read books on the Lock-in Syndrome, spinal and other debilitating injuries, and ultra-marathon training and we’d practice. We did qigong and body awareness and we’d practice. Mum gave me back, shoulder and arm massages and we’d keep practicing.  With practice, I certainly got better at typing, but sometimes I get discouraged as no matter how hard I tried, especially in self-correcting, my finger seems to have a mind of its own, and persists in hitting an adjacent key time and time again. Inside, I knew I need to keep going because finding my voice with a means to communicate has helped me establish some control over my world, and especially, to connect with people and with life. 

 

​