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Growing up Autistic

Empty swing in sand-covered playground with child on equipment unfocused in background.

Written by Tim Chan

I was diagnosed with Autistic Disorder at three years old, with severe developmental delays in cognition, social understanding and communication. I do not speak despite intensive intervention and speech therapy. I have learned to use Alternative and Augmentative Communication, with assisted typing to communicate, which I was taught at nine, as my preferred mode of ‘talking’. I have severe hypersensitivities, dyspraxia, information processing issues and very high levels of anxiety as well.

My Autistic challenges have been part and parcel of life from earliest memories. Putting things into the big picture has always been problematic. I recall a time when I was becoming more mobile, towards the end of my first year. On this occasion, I had pulled myself up using the bars of my crib, and once upright, was puzzled as to where I was. From my standing position, my view of the room had changed and I thought I was in a different place to when I was sitting down. Likewise, I identified family members by visual appearance, smell, tone of voice, movement, etc., but with less familiar people, like relatives or friends, I was often confused when they came with different attire, as I couldn’t reconcile these deviations with how I saw them before.

In hindsight, I realise that most of my childhood was spent in trying to make sense of my body, of the people around me and the rest of my world. My hypersensitivities, which made every incoming sensation overwhelming, meant that I was constantly trying to modulate things to a more comfortable level. From Day One, I was blocking out most of the input from the outside world. These issues translated into an incomplete picture to form a working map of my surroundings and zero language comprehension or understanding of what language was used for.

To this day, when anxiety climbs with oncoming sensory overload, my language comprehension will decelerate to a standstill, and I will lose sense of my body as I still have a fragmented body map, with difficulty in coordinating the various body parts.

From about three to six, I was exposed to a home program with a behavioural focus in which assorted therapists or teachers came for hours each day where I had to sit at the table to go through tasks like matching objects, or pointing to the right thing when therapists said a word. Again, with the disconnection between my mind and body, this leg of my learning journey was another obstacle course which I had to run, but was seldom able to succeed at. In one drill, when the teacher asked me to point to the right object, like ‘dog’ or ‘ball’, I would try to figure out the correct answer by a combination of guesswork and her body language. Without language, I didn’t understand what I was supposed to do and was completely at sea. Because it was all very baffling, and pretty much hit and miss, the hours of ABA seemed interminable. Even when I was finally released from the table, I would drag my feet as life was no longer my own.

Early Intervention, soon after diagnosis at three, meant that I had to deal with a new set of expectations and classmates with similar challenges. Kinder at four added another mission impossible operation.

My challenges in not being able to understand or do the simplest thing made life extremely unnerving with additional external demands. I often felt stupid, as well as ignored and dismissed by others.

At kinder, my default activity was staying in a safe corner by the bookcase with eyes shut and hands on ears to block out the noise and mayhem. Fortunately, Mum was allowed to stay and was often on hand which made it easier for me to adapt. I also had the opportunity to watch the other kids, and although I knew I couldn’t do many things, like talking, making Lego models or playing house or chasey, I was ‘okay’ in their eyes. No child seemed to mind that I wasn’t quite like them, I was accepted and included in activities, and enjoyed blending in when playing in the sandpit or climbing on the frame.

At this stage, my understanding of people and my surroundings involved working things out by context. For instance, I would get an idea of what we’d be doing when we got in the car in the morning based on seeing familiar buildings or other landmarks. So if we drove down the street to the main road, past the shopping centre and kept going, I knew we would be dropping my sibs off to school followed by going to kinder. On the other hand, if anything in this route changed, like when Mum had to pick up something, or change the order of drop-off for out-of-routine activities, I would panic. By the time we got to kinder, just by taking a different route, I would be kicking and screaming.

In my rule-bound contextual understanding of the world, the anticipation of an event led to knowing what to expect and hence what to do. Since I didn’t talk, I couldn’t ask questions to clear up any issues. When my theories of the world disintegrated in the face of things unaccountable, my meltdowns were the only way of telling people I was at a complete loss and didn’t know what to expect or what was expected of me.

Mum had to come to terms with my Autistic ways of doing things. But she refused to accept the gloomy prognosis accompanying my diagnosis, and worked hard to provide me with the best resources and opportunities to live the life my sibs were leading. Upon seeing the writing on the wall with ABA, in the huge outpouring of money and time with three long years of not achieving the expected results, Mum forged another path in designing a program tailored to my unique learning style. I was also given the necessary support and encouragement to learn at my own pace.

The tide began to turn, and I regained my zest for life with mastering language at around five to seven, which opened my eyes to a wonderful new world.

I remember when the first glimmer of language comprehension dawned. After hundreds of trials and three months of ABA, I finally figured that the sounds the teacher made when she held out two objects had to stand for the things in her hands. With more trials, I learned to associate certain sounds with things like ‘dog’ or ‘ball’. While I was still a long way off from understanding the meaning of words, an ‘aha’ moment had arrived: the sounds people made were for communication. With this momentous discovery, I became more motivated in discriminating the speech sounds associated with things. Mum made word games in pairing spoken or written words with objects, gradually replaced by photos of objects. With home-made books of stories of daily routines and special events by matching the words to the photos, another flash of insight came that language constituted the means for telling people things, like ‘I went to kinder’ or ‘I got to go swimming’, etc. This quantum leap in understanding enabled me to eventually get the meaning of words by translating language into pictures and vice versa. It was a laborious process but with practice, was getting much faster and smoother with less hiccups.

My increasing grasp in language made understanding the world much more effective and provided unforeseen opportunities to connect with people and engage with life. As I began to take my first steps in conquering this brave new world, it was the unconditional love and support of my people that made my endeavours possible, and it is to them I am forever indebted.

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