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Saturday, August 16, 2014

Science and Community Engagement

At Autism, Mayada Elsabbagh and colleagues have an article titled "Community Engagement and Knowledge Translation: Progress and Challenge in Autism Research."   The authors note that clinical practice and public beliefs do not always reflect good evidence, and they cite the vaccine controversy as one example.
In addition to these prominent examples of absent or flawed use of evidence, public engagement, which is viewed as a key facilitator in translation, has been inconsistent in the field of autism. On the one hand, families themselves instigated and drove advances in research through active support and fundraising. Parents have also historically contributed to expert understanding of autism and directed avenues of research through advocacy and fundraising for autism research (Silverman and Brosco, 2007). On the other hand, scientific research is often viewed as disconnected from the divergent ways of thinking about and responding to autism in society, the variable immediate needs and priorities across different communities, and the policy choices made by governments (Elsabbagh, 2012; Khan et al., 2012; Pellicano and Stears, 2011; Young et al., 2002).

Numerous cases of this disconnect have been previously described in the field of autism. First, it has been suggested that media hyping of biomedical studies and premature claims of clinical utility of new findings can, in the long run, undermine the true value of scientific discovery and reduce public trust in research (Walsh et al., 2011). Second, framing of long-term goals of autism research by some charity funders as a search for a “cure” has led to antagonism from neurodiversity advocates who reject the view that autism is a disease needing a cure (Jaarsma and Welin, 2012; Molloy and Vasil, 2002; Singer, 1999; Walsh et al., 2011). Third, when considered from the perspective of diverse cultural and socio-economic contexts, certain practice guidelines for the identification and management of autism have limited utility especially in low- and middle-income countries (Khan et al., 2012). Therefore, a real or an apparent disconnect between the mainstream research agenda and the values, needs, or priorities of any stakeholder group poses a challenge for knowledge translation.
  • Elsabbagh M (2012) Perspectives from the common ground.Autism Research 5: 153–155.
  • Jaarsma P and Welin S (2012) Autism as a natural human variation:reflections on the claims of the neurodiversity movement.Health Care Analysis 20: 20–30.
  • Khan NZ, Gallo LA, Arghir A, et al. (2012) Autism and the grand challenges in global mental health. Autism Research 5: 156–159.
  • Molloy H and Vasil L (2002) The social construction of Aspergersyndrome: the pathologising of difference? Disability &Society 17: 659–669.
  • Pellicano E and Stears M (2011) Bridging autism, science andsociety: moving toward an ethically informed approach toautism research. Autism Research 4: 271–282.
  •  Silverman C and Brosco JP (2007) Understanding autism: parents and pediatricians in historical perspective. Archives of Pediatrics & Adolescent Medicine 161: 392–398.
  • Singer J (1999) Why can’t you be normal for once in your life?From a problem with no name to the emergence of a new category of difference. In: Corker M and French S (eds) Disability Discourse. Buckingham: Open University Press,pp. 59–70
  • Walsh P, Elsabbagh M, Bolton P, et al. (2011) In search of biomarkersfor autism: scientific, social and ethical challengesNature Reviews Neuroscience 12: 603–612.
  • Young K, Ashby D, Boaz A, et al. (2002) Social science and theevidence-based policy movement. Social Policy and Society 1: 215–224.

Another problem is that many academic journal articles are not readily available to the general public.  Unless one has an institutional affiliation, one has to pay a good deal of money for access.  This single article, for instance, costs $30 to purchase.  (One important exception: it is a condition of Autism Speaks funding that all peer-reviewed articles supported in whole or in part by its grants must be made available in the PubMed Central online archive.)