Friday, October 15, 2010

Inspiration is Power: Part 4

Can autism be treated? As a parent of an autistic child, available treatment options fall into four main categories: Pharmacological, Behavioural, Dietary and Alternative. The pharmacological treatments for autism are limited with a few prescription medications being used with minimal benefits. Fenfluramine was used to reduce the blood levels of a naturally occurring body chemical called serotonin. Abnormally high levels of serotonin are found in a significant percentage of autistic children but the treatment has a wide range of unwanted side-effects and limited benefits. Other less invasive pharmaceutical treatments such as the amino acids like L-carnosine, omega-3 fatty acids and megavitamin regimes have been widely used, and while these treatments alleviate some symptoms, they fail to connect with any underlying pathology. Dietary interventions focus primarily on the exclusion of specific proteins such as casein (dairy) and gluten (wheat, barley) and the elimination in the diet of chemically treated foods that may contain toxins. These proteins are thought to pass through the gut into the bloodstream unprocessed due to Inflammatory Bowel Disease (IBD), or as it is more commonly known, leaky gut syndrome and cause an opioid (as if high on opium) effect.

Despite the authority and prestige that rigorous evidence based scientific treatment regimes provide, alternative treatments are highly regarded by parents of autistic children. One reason for the popularity of alternative treatments could be the intoxicating impact of the optimistic language of hope it provides for the parent. Unlike the dry and clinical taxonomy of the medical journals, the engaging narrative style delivery of their alternative medical message is uplifting and is supported by a folkloric body of testimonies from parents and practitioners that support their claims. Disciplines such as homeopathy, cranial osteopathy, metamorphic technique, auditory integration training, brain wave therapy, music therapy and herbal remedies are criticized for their lack of evidence by the medical community, but very few scientific studies have been completed to provide empirical data.
Based upon the empirical research available to date, behavioural intervention is the most effective treatment for children with autism. The Applied Behavioural Analysis treatment regime developed by Ivar Lovaas at U.C.L.A. is the most thoroughly documented and pedagogically refined of the behavioural strategies to date. Intensive behavioural therapy seeks to mould the neural pathways of a child while their brain is still developing and impose rote learned foundation skills of language, comprehension and appropriate behaviour. Theoretically, these learned responses to social skills and basic knowledge are then generalized and allow the child to begin to respond in an intuitive and appropriate manner. While they are an effective early intervention strategy, behavioural therapy treatments treat the symptoms but not the underlying pathology.

Alongside cause, the issues of cure and recovery are the most resonant topics addressed in autism narratives. Can children recover from autism? Is there a cure? The debate surrounding the notion of cure and recovery continues to be hotly contested by a range of stakeholders including medical researchers, parents and autistic adults. Temple Grandin, an autistic adult and author of several best-selling autobiographies, writes positively of her “emergence from autism” as a long slow process of evolving awareness of self and of her journey of self-discovery. Jasmine Lee O’Neill contests the notion of healing by saying that she has no wish to be healed or “emerge from autism”.  She goes on to write that autistic people possess their own special gifts and are not incomplete or less than others. Both Lynne Hamilton and Catherine Maurice chronicle the parental journey of diagnosis, treatment, hope and recovery in their respective autobiographies. Their common view is one of aggressive treatment and medical recovery. Clara Claiborne-Park in her parental autobiographies, The Siege and Exiting Nirvana, differs from the dominant parental view of autism and concurs with the medical definitions of autism, which affirm that autism is a lifelong condition for which there is no cure. So while the biomedical discourse stresses the absence of a cure, the pathographic discourse is ambiguous, and painfully hopeful.

In February 1998 as a parent of a newly diagnosed child with autism, I readily found a canon of texts as my most influential sources of information. Speaking with differing yet equally compelling voices, biomedical texts and parental autobiographical writing constituted the corpus of texts that will be discussed in this blog. Even as a novice reader in the genre of biomedical and scientific writing, all internet, library, catalogue and database searches ultimately lead to a single authoritative medical voice, the American Psychiatric Association’s revised Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition  or DSM-IV (TR). The DSM was first published in 1952, followed by updated editions in 1968, 1973 and the current fourth version published in 2000. In addition to the DSM-IV, the second group of texts that emerged on our radar continually for the next five years were disorder-specific diagnostic instruments such as the Childhood Autistic Rating Scale or CARS. Whenever a child is born, grows and develops in a modern western society, every possible statistic imaginable is gathered so as to further articulate their position on a global scale of normalcy. Whether the diagnostic markers are physical characteristics such as head circumference, femur length or hip rotation, or whether it is developmental characteristics such as plosive consonants in babble, midline coordination, auditory brainstem response or fine motor planning, there is an instrument to measure the difference. In the case of autism, there is a range of specialized screening tools that are designed to identify and position children on a continuum that ranges from severe classic autism to high functioning. 

The American Psychiatric Association’s tradition of biomedical discourse began in the mid nineteenth century, when the prolonged incarceration of persons deemed to be insane in Dickensian asylums or ‘dark houses’ was commonplace. It is now the peak body for psychiatrists in the United States of America and consequently worldwide with over 36,000 members. Its key publication, the Diagnostic and Statistical Manual, is now in its fourth edition and is the global touchstone for medical practitioners seeking to recognise, pathologize and diagnose a brain disorder that results in mental illness.
A generation of psychologists, neurologists, psychiatrists and researchers in disorders of the brain have contributed to the development of this diagnostic manual. The identity of the author in this context is shrouded in the anonymity of the American Psychiatric Association. No individual is listed as the author in this tome of neurological proclamations. Scholarly tradition in scientific writing mostly chooses to recognise teams of scholars with a roll-call of the intellectual elite appearing on a ‘byline’. If this approach becomes too cumbersome for journal editors or conference planners, some researchers may be acknowledged with the simple Latin suffix et al.
While references are made to a task force and various committees and work groups, the DSM-IV emerges as the spontaneous, homogenous voice of this peak professional organization. This single unanimous voice carries with it an assumption of controlled objectivity and uncompromising intellectual honesty. These assumptions are, however, occasionally contested. In the 1960’s the DSM listed homosexuality as a mental illness.
In articulating the list of life-shattering disabilities that constitute autistic disorder, the authorial identity of the DSM excludes any notions of empathy. There are no projected consequences for the affected subject, no lifestyle implications for the adolescent sufferer, no empathetic suggestions for parental responses. The members behind the anonymous collective authorship must breathe a different clinical air, far removed from the reality of the devastating disability they articulate. When describing the autistic child’s predisposition to other medical conditions they write:
Various non-specific neurological symptoms or signs may be noted (e.g., primitive reflexes, delayed development of hand dominance) in Autistic Disorder. The condition is sometimes observed in association with a neurological or other general medical condition (e.g., fragile X syndrome and tuberous sclerosis).
Seizures may develop (particularly in adolescence) in as many as 25% of cases. Both microcephaly and macrocephaly are observed. When other general medical conditions are present, they should be noted on Axis III.

What we have here is a classic example of scientific discourse. Its features are a cold and distant objectivity where the patient exists only as neutral host of the resident pathogen or disorder. While the emphasis in scientific discourse must be to limit the opportunity for misinterpretation with neutral and exclusionary language, the absence of any other contextual description may serve to reinforce the readers’ view of pathology without humanity, illness without impact, pain without feeling. Objectification of the autistic child for the purposes of diagnosis and measurement is a hallmark of the biomedical voice. As parents, how do you measure your child?

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.

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?