Tuesday, September 28, 2010

Inspiration is Power: Part 3

Public perception of autism has been largely framed by Hollywood caricatures such as that of the character Raymond, made popular by Dustin Hoffman in the film Rainman, or by fictional autistics such as Mark Haddon’s Christopher in The Curious Incident of the Dog in the Night Time. But do these fictional representations of Autism Spectrum Disorder really capture with any accuracy the realities of the condition, and its impact upon individuals and families? Pop folklore suggests that global figures such as Albert Einstein and Microsoft founder Bill Gates also suffered from autism. 

This popular association of autism with savant skills is a misconception as only 10% of people with autism possess savant skills compared with 1% of the mainstream population. This delicious fantasy serves only to reinforce a community perception that people with autism and their families inhabit a carnival world of welcome eccentricities with children reciting telephone books and playing piano concertos by rote at age five or decoding deeply encrypted military messages while watching television. But characters like Charlie in the Australian film The Black Balloon are probably closer to the mark.

 Upon receiving Charlie’s diagnosis of severe Autism Spectrum Disorder, we looked in the only medical text we had at home which was the Oxford Concise Medical Dictionary. The first sentence in its definition of autism read, “A rare and severe psychiatric disorder of childhood with an onset before the age of two and a half years . . . many are intellectually sub-normal . . .”.  The directness of language used in the text was shocking, and the more medical texts we encountered in those first months the more stark and hopeless the situation seemed.
In contrast, the autobiographical writing from parents of autistic children had a quasi-religious tone  where they wrote of the theft of their child by some type of demon invader, a type of unholy possession that transforms the child from an active participant in life to a passive host of an unwanted trespasser. Autistic authors themselves, rather than describe their autism as a biological or genetic pathology, view it as a way of being, a way of living. Their frank and intimate audits of self, and the unique filters through which they interpret the world, are in some ways painful to read but also incredibly inspiring and full of hope. The perspective that autism could be viewed as a beautiful event rather than a neurological disorder is in sharp contrast to the majority of literature promoted by community organizations in their orientation of newly-diagnosed parents into a world of resignation, respite and grief. So, while the direct language of the medical encyclopaedia offered concise and rigid representations of psychopathology, these autobiographical stories immediately suggested a less clearly defined perspective on the disorder.

In examining both the biomedical and parental accounts, one primary question remains unresolved: what causes autism? There is vigorous debate circulating in biomedical and popular journals regarding the trigger that causes the onset of autism in infancy, none of which provides any real nourishment to the hope-starved parents of autistic children.

One controversial theory involves the acquisition of the disorder through some sort of systemic infection, triggered autoimmune process dysfunction or vaccine injury. The greatest volume of research energy is currently being directed toward the latter scenario of vaccine injury with a combination of anecdotal parental accounts and scientific research pointing toward vaccines as a causal factor in the onset of ASD in infancy. While key research in this area has now been discredited, the concept of damage to the child through some type of malicious third party agent (e.g., Government Vaccination Policy) finds a willing audience in parental autobiographical writing possibly because it allows the author to physically locate the pathogen in the form of thimerosal (mercury-based vaccine preservative) and a demon in the form of government health policy. The measles-mumps-rubella (MMR) vaccine is viewed as the most likely suspect in the equation with both popular and scientific press devoting significant energy to reporting statistical congruence in autism diagnoses and MMR vaccine delivery and the emotionally and politically charged debate that surrounds it. The practice of vaccine manufacturers using thimerosal (a preservative which contains 50% mercury) as a stabilizing agent in vaccines is being cited as the cause for the explosion in autism diagnoses in the last twenty years. While researchers found that thimerosal-containing vaccines exposed children to levels of mercury that far exceed the maximum permissible levels set by the American EPA (Environmental Protection Agency) and the FDA (Food and Drug Administration), subsequent studies have failed to identify a reliable causal link.

So, from the biomedical perspective, their narrative suggests autism’s causation is genetic predisposition, a consequence of the human reproductive lottery. But, with numbers coming up for families around the world increasing at an exponential rate, the pathographic narrative is looking for the trigger, for someone to blame.

Monday, September 27, 2010

Inspiration is Power: Part 2

In the years immediately following Charlie’s diagnosis, I was passionate and driven to succeed in my search to understand and perhaps even cure my son’s autism. While the term ‘lay’ normally operates within a religious setting, the certainty provided by the search for a cure and hope for my child empowered me with the moral authority, if not spiritual zeal, to boldly engage with this foreign literature. Like most religious orthodoxies, biomedical science operates within a similarly rigid setting of jealously guarded specialized knowledge, whose alternative readings are usually strenuously opposed. 
This literary pursuit was the beginning of what has become a personal quest narrative of hope and recovery. There are three dominant strategies in medical narrative.  The first is the restitution narrative in which health is regarded as the normal state to which the ‘sick’ person will be ultimately restored. The second is the chaos narrative where the illness lacks causality, sense and predictable trajectory and subverts the expectation that one event leads to another. The third and final narrative is the quest narrative. Loosely based on the writings of Jung and Homeric recollections, the quest narrative follows the narrative arc of a hero who suffers, acquires knowledge and then returns triumphantly to make that knowledge known.
In addition to the biomedical texts that articulate every aspect of the disorder’s symptomatology, pathology and prognosis, I encountered a body of ‘illness narratives’ chronicling the experience of parenting a child with autism. Books such as The Siege and Exiting Nirvana by Clara Clayborn-Park, Let Me Hear Your Voice by Catherine Maurice and Facing Autism by Lynne Hamilton are benchmark texts in the genre and required reading for any parent of a child newly-diagnosed with autism. Temple Grandin’s Emergence Labelled Autistic and Donna Williams’ Nobody Nowhere deliver fascinating insights into the autistic experience. The narratives of these human lives, unlike the socially neutered biomedical hosts, were rich in emotion, inspiration and personal experience.

Twelve years have elapsed since I asked myself, ‘Will everything be normal again?’ but the answer must remain an open question. For the journey of grief, discovery, advocacy and healing upon which I was an unwilling traveller has transformed both the passenger and the destination. I have retraced the steps in this journey in a memoir titled The Other Country: A Father’s Journey with Autism. The title, The Other Country, in this context refers to the largely invisible parallel society inhabited by anyone who lives outside the mainstream. This ‘other country’ I encountered is inhabited by the families of children with disabilities whose shared identity is as defined by their culture, their language, and their dreams as any migrant population. Unlike the festive public celebrations of difference that multiculturalism champions, however, this community celebrates its identity and aspirations in more private spaces. These are spaces from where even those progressive champions of support and advocacy retire respectfully, leaving the disabled and their families to their private lives.