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 emotion, 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, that I 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. In the psychologist’s pronouncement right in front of me, she had assumed that I was unable to understand anything she said, and also lack the capacity to understand things of importance, By categorising and labeling me, I was dismissed as a lesser human being because I did not speak.
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 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.
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 the 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’d get discouraged as no matter how hard I tried, especially in self-correcting, my finger seemed to have a mind of its own, and persisted in hitting an adjacent key time and time again. Inside, I knew I needed to keep going because finding my voice with a means to communicate had helped me establish some control over my world, and more importantly, to connect with people and with life.
In addition to continuous sensory overload, movement difficulties and extreme anxiety, it was never going to be easy for me to adjust to the busy life of school, but with assisted typing, I could at least feel a sense of being in control. I was able to more or less adapt to primary school because of three factors: a congenial and supportive school environment, a fantastic Aide, and as I started to type to communicate I got better at understanding and taking part in the school programs. However, high school was a completely different ballgame. In the first two years, I faced a bleak time. Without speech, I was further restricted from using my method to communicate via typing, as the school decreed that they did not have the resources to accommodate my differences and to train up staff to support my typing. This deprived me of my ‘voice’, and my means to connect with people. All people could see was the Autistic kid, as I wasn’t able to let anyone get to know me as a person. I dreaded the moment I stepped into the school gate, but tried my best to navigate the overwhelming array of input and expectations from teachers, Aides and students in mute despair. The task of managing the constant and extreme overload from hypersensitivity took on Herculean proportions when I walked from class to class or around the playground during recess and lunch. The movement, noises and voices of students in the corridor, or outside shooting basketball, playing dodge ball, or just laughing or chatting with their friends felt like I was trapped in a gigantic theme park ride in a malfunctioning buggy, with very little control over its speed or direction. Whenever someone noticed me, I felt like the Hunchback of Notre Dame amongst graceful athletes.
Social isolation and the nagging feeling of being in the wrong place became inescapable facts of my high school life. With no speech, and no means to type with support and connect with people, I felt completely overlooked as people walked past me as if I didn’t exist. I wasn’t aware that I was becoming depressed, but got the sense that life was grinding me down. At times, I even felt the world would be better off without me. Through those dark days, I would never have made it if I didn’t have people who care about me and believe in me. Eventually, after strenuous negotiations with the school from my team of advocates, professionals and family, I started to type with support in Year 9. With a supportive social network, family, advocates, and concerned professionals in and out of school, I gradually found my voice and my feet. In Year 10, I became more confident to speak up for myself and more importantly, was listened to. I was able to start believing in myself again. With the support of my advocates, my Aides, the Head of Senior School and teachers, as well as people who care personally, my family and friends, I managed to finish Year 12 graduating with the rest of my class.
My journey towards communication has been long and arduous, but I am one of the lucky ones. With assiduous practice, I am now approaching independence, able to type with just a light touch on my shoulder or back, which goes far in establishing that what I type comes from me, and not my facilitators. It is incredibly empowering to talk to people, and to write about things from my perspective after years of being denied this opportunity. With communication, a whole new world is opening for me. With continual improvement in assisted typing, I have been able to attend and complete mainstream high school, make friends, join advocacy groups, present at forums, and even give a TEDTalk. With the support of my social network including my mentor Chris Varney, with being provided with a means to communicate, and with their belief in my communicative competence, I can be optimistic towards getting a meaningful life and a worthwhile future.
We need your support to mentor more people on the Autism Spectrum. Join us by donating or giving monthly to create employment opportunities for people on the Autism Spectrum, and to support schools and workplaces to celebrate their individual strengths.