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?