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Thursday, July 4, 2013

Science and Autism

As Debra Stone described, paradox defines policy making (Stone, 2001). One such paradox involves the tension in democratic politics between the responsibility to ensure the protection of unpopular science while respecting a boundary between science and politics which in the ideal firmly separates politics from the objectivity of science. The most passing reflection on the history of the twentieth century reveals the potential of both reliance on scientific objectivity and the politicization of science to at best set progress back and at worst lead to social injustice. In the case of autism related politics in the United States, negotiation of this paradox is demonstrated by the issue of thimerosal in vaccines. Intriguingly, the less popular science relied most ardently on the traditional hallmarks of scientific reputation.
Another paradox found in the roles of science in autism related policy involved the paradox of participation. Good practice in both democracy and science involves a broad basis of participation in which power of voice is ideally connected to the merit of the argument. Of course, both realms tend toward cementing of norms and power tied to money rather than evidence or persuasion. In part in response to the default norms which mainstream organizations engage as unquestioned truth, other autism related organization tend to advocate overt restriction participation in scientific discussion even while insisting that their voices should be better represented in autism policy discourse. The paradox strongly relates to the definition of science and the degree to which distinctions between basic and applied science have become more complicated in modern research. It is also a reflection of the expectation that public enjoy increased involvement in the articulation of scientific questions.
Finally, examination of use of science in autism related policy discourse turned up extremely limited discussion coming from the perspective of rights of individuals with autism, particularly outside of organizations explicitly committed to neurodiversity. The legislative discourse included no discussion of neurodiversity and limited discussion of rights. The discussion of rights that was found in the legislative discourse was generally set in opposition to science. Entitlements such as education or social services were mentioned as other important priorities needed for individuals with autism that should also be attended to while society waits for answers about autism. Typically such discussion was exclusively about children with autism and their nuclear families. Given the decades-long history of rights based disability policy, the lack of such discussion in autism related policy discourse could be considered surprising, if not, disappointing. On the other hand, in discourse relating to specifically the role of science in autism related policy, this circumstance could be considered less discouraging and, instead, a recognition that normative elements of public policy, such as the provisions for protecting the rights of historically oppressed individuals lies beyond the realm of science. In the end, the interactive goal of science and democracy should be mutual reinforcement and improvement.
In The Journal of Applied Research in Intellectual Disabilities, Travis Thompson writes:
Three main factors have contributed to the proliferation of autism research. Subsequent to the demonstration that many children with autism could be effectively treated using early intensive behavioural intervention (EIBI) methods (Løvaas 1987), the idea that autism was an immutable condition largely vanished. Autism has become an imminently treatable condition, given effective methods are used with sufficient intensity. Persistent barriers to treatment are continued theoretical quibbling, insufficient personnel training and limited political willingness to invest in treatment, although in some countries antiquated theoretical ideas persist (Feinstein, 2011; Haag et al. 2005). Second, it is widely recognized that autism has its basis in cerebral dysfunction, and some of the brain are as known to be involved in autism symptoms are established. Different types of events can lead to brain malfunctioning to varying degrees with corresponding variations in symptoms (e.g. genetic conditions, syndromal developmental conditions, toxin exposures). Autism is a family of overlapping conditions; there is no single homogeneous autism disorder. Third, several technological advances greatly contributed to a rapid increase in autism research and changes in practice beginning in the mid-1960s and abruptly increasing in the early 1990s. Without those technological advances, only a limited number of these discoveries would likely have occurred, and the lives of people with autism spectrum disorders would be more limited as a consequence.
Introduction for the first time, of a widely accepted and validated diagnostic instrument, the Autism Diagnostic Observation Schedule (ADOS) and its sister research instrument, the Autism Diagnostic Interview Revised (ADIR-R), made it possible to reliably distinguish individuals with autism spectrum disorders from those with other mental health conditions or developmental disorders by 2 years of age (Lord et al. 1989). The introduction of the ADOS and training of a substantial cohort of test examiners revealed that a great many more children met the criteria for autism than had previously been recognized. It became apparent that the earlier notion of autism from the 1960s was very misguided, and that many people with autism have some spoken intentional communication, exhibit social interest and display little aggression or self-injury, unlike what had previously been believed. Most of those people had gone undiagnosed prior to 1990, or if they were diagnosed, it was with learning disability or another mental health
label (Rutter 2005a,b).
  • Feinstein A. (2011) A History of Autism: Conversations with Pioneers. Wiley-Blackwell, Inc., London, UK.
  • Haag G., Tordjman S., Duprat A., Urwand S., Jardin F., Cl ement M. C., Cukierman A., Druon C., Du Chatellier A. M., Tricaud J. & Dumont A. M. (2005) Psychodynamic assessment of changes in children with autism under psychoanalytic treatment. International Journal of Psychoanalysis 86(Pt 2), 335–352.
  • Lord C., Rutter M., Goode S., Hemmsbergen J., Jordan H., Mawhood L. & Schopler E. (1989) Autism diagnostic observaton schedule: a standardized observation of communicative and social behavior. Journal of Autism and Developmental Disorders 19, 185–212.
  • Løvaas O. I. (1987) Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology 55, 3–9.
  • Rutter M. (2005a) Aetiology of autism: findings and questions. Journal of Intellectual Disability Research 49(Pt 4), 231–238.
  • Rutter M. (2005b) Incidence of autism spectrum disorders: changes over time and their meaning. Acta Paediatrica 94, 2–15.