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.

1 comment:

  1. Very insightful Michael. I admire your courage and openness to share your personal and sensitive story with others, as you navigate your way through what seems to be a plethora of information and opinions. I think blame is a way for copping for some people. It makes the inexplicable or unknown easier to deal with. I imagine it must be challenging to develop your own feelings when you are influenced by such contrasting information.
    My thoughts and prayers are with you and your family.