Academic journal article Health Sociology Review

Sorting out Autism Spectrum Disorders: Evidence-Based Medicine and the Complexities of the Clinical Encounter

Academic journal article Health Sociology Review

Sorting out Autism Spectrum Disorders: Evidence-Based Medicine and the Complexities of the Clinical Encounter

Article excerpt


The American Psychiatric Association is currently embroiled in an argument, both within its ranks and in the wider public domain, over the boundaries of autism. The Association is in the midst of revising its compendious Diagnostic and Statistical Manual, the authoritative and widely used classifi cation system for mental health disorders, in preparation for its fi fth edition. It proposes to roll Asperger's syndrome, the diagnosis of choice for high-functioning, high profi le individuals like designer Temple Grandin and artist Stephen Wiltshire, into a more general rubric, part of the autism spectrum, rather than leave it as a separate, special form of autism. The current version of the DSM-IV-TR lists fi ve kinds of autism: autistic disorder, Asperger's disorder, Rett's disorder, childhood disintegrative disorders, and pervasive developmental disorder not otherwise specifi ed (PDD-NOS). The psychiatrists embroiled in the DSM debate disagree about the evidence for classifying Asperger's as a separate syndrome, arguing that research points to the continuity of high-functioning autism with the extreme impairment found at the other end of the scale1. This claim is contested both by other psychiatrists and paediatricians, and by the advocates for the neuro-diversity movement, who claim Asperger's as a positive identity rather than a defi ciency, and oppose its assimilation into a spectrum disorder (see Baron-Cohen 2009; Grinker 2010; Hamilton 2010).

We draw attention to this DSM controversy not because we propose to take one side or other in the debate, but because it gives a strong fl avour of the biomedical uncertainty that surrounds autism spectrum disorders (ASDs) more generally. Autism has widely variable symptoms which manifest differently in each individual, in highly unpredictable combinations (Grinker 2007). The autism spectrum encompasses communication diffi culties, learning diffi culties, social awkwardness, and severe disability problems that are sometimes combined with extraordinary abilities like those of Grandin and Wiltshire. The current version of the DSM-IV-TR defi nes autistic conditions as:

Characterized by severe and pervasive impairment in several areas of development: reciprocal social interaction skills, communication skills, or the presence of stereotyped behaviours, interests, activities These disorders are evident in the fi rst years of life and are often associated with some degree of Mental Retardation. (American Psychiatric Association 2000)

Social impairments might include poor eye contact, uncommunicative gestures, a lack of friends. Communication impairments might involve a delay in or absence of (spoken) language, or repetitious or imitative use of language, as with echolalia for example, where the child repeats another's utterances without reference to their meaning. Stereotyped behaviours, interests and activities refer to 'infl exible adherence to non-functional routines' (such as lining-up toys and then throwing a tantrum when the line is interfered with), stereotyped body movements (such as hand fl apping or rocking the body), and 'preoccupation with parts or sensory qualities of objects' (such as the sound an object makes, or squinting while holding an object up to one's eyes; Ozonoff et al. 2005:523).

Autistic presentation in the clinic is thus highly idiosyncratic, and represents particular problems for diagnosis. The sheer heterogeneity of ASDs in terms of causes, age of onset, manifestation of symptoms, outcome and comorbidity with other disorders, means that the application of this label is broad and thus leads to indeterminate medical defi nitions of this disorder amongst practitioners (Bumiller 2008). There is a concern that some children diagnosed with an ASD have been misdiagnosed (Romanczyk et al. 1994). Unlike more straightforward childhood disorders like asthma or allergy, ASDs lack a biological marker or a set of pathology tests to aid in this diagnostic process. …

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