Saturday, September 25, 2010
Inspiration is Power: Part 1
In March 1996 my life changed forever with the birth of my first child, Charlie. As with all first-time parents, my world view, philosophical assumptions and personal priorities were tossed into the air and on their return to Earth, settled in a range of locations that I would not previously have been able to foresee. My professional life as a university music lecturer initially became a complicated distraction to the wonders of new life and then, almost as quickly a snug refuge from the hourly crying, feeding, nappy changing and general chaos that a new baby brings to any number of orderly suburban homes. I cast myself enthusiastically into the role of new committed father with the purchase of a wide range of products designed to telegraph to the pubic gaze our allegiance to a carefully chosen set of values. We were educated, outdoor, safety conscious, creative parents with an eye on the environment and a subscription to Choice Magazine.
Once the dust had settled and a routine in place, my wife and I immediately planned a second child to partner our first in a life of choreographed adventures, schoolyard discoveries and family bliss. Sixteen months later in July, 1997 our second child Thomas was born amid a chorus of family joy and triumph and a more sober and informed redistribution of personal priorities and philosophies. Despite the temporary derailment of domestic order and repeated disruption to routine and priorities, we were soon back on the rails with a Disney roadmap of life adventures in place.
However, as Charlie approached eighteen months of age, his developmental milestones which to this point had been boringly consistent with statistical norms began to regress. His language diminished, he started to lose eye contact with us and he began to retreat from all contact with his family and his environment, choosing instead, for example, to play repetitively with a single toy for hours at a time. His happy demeanour was replaced now by almost constant crying, restless irritability and self-absorption. His fixation with a single object or ritualistic play routine could see him secluded in his own world for extended periods of time and if interrupted, was capable of intense and lengthy bouts of uncontrolled screaming. The subtly eccentric behaviours that Charlie began to exhibit at eighteen months of age intensified over a four month period to the point where at age twenty-two months we decided to have him assessed by our family GP. The doctor assured my wife and me that while there was some evidence of unusual behaviour and delayed development, she believed that a thorough evaluation by a developmental paediatrician would ease our concerns. Our personal narrative of ‘obsessive parents with quirky child’ was shattered when two weeks before Charlie’s second birthday a paediatrician diagnosed him with severe Autism Spectrum Disorder, a life-long condition for which there is no cure. Our colourful family folklore of eccentric cousins and late bloomers was instantly silenced by this unwavering voice of biomedical authority.
After several weeks of numbing and incapacitating grief, we began in a more systematic and strategic way to try to answer the questions that our family and friends were asking and that we were also asking ourselves. What is autism? Is there a cure? What is the treatment? What do other parents do when their child is diagnosed with autism? What will Charlie be like when he is an adult? Will he recover? Will everything ever be normal again? Thus began our journey of research and therapeutic intervention that continues to this day. Our research over the following months and years emerged from two very different genres of writing, each speaking to a distinctly different audience. The first was the biomedical voice which focuses on the physical processes of illness such as the pathology, biochemistry and the physiology of disease and which speaks to the scientific reader. The second was the parental autobiography; the personal accounts from parents of their journeys parenting a child with autism, providing emotional and practical roadmaps for action and speaking to a much broader general readership.
Where to next?