Autism, genetics and epigenetics: why the lived experience matters in research

Popular scientific publications regularly have articles with headlines suggesting that 'autism is hereditary' or that the 'risk for developing autism' is mostly caused by genetics. Consequently, there is the suggestion that associating certain genes with certain subtypes of autism will pave the way for future medicines.

Indeed, as the key diagnosis of the late 20th and early 21st centuries, autism has for long been perceived as a neurodevelopmental disorder that one has from birth and that is highly familial and genetic in nature. Although it is true that genes play a significant role in its development, the vast majority of genetic variations that may explain autism are risk factors, meaning that these variations also occur in the non-diagnosed population, and that other factors influence autism's development. As pointed out by Pellicano et al. in 2014, genetic research and its discourse is based on notions as 'truth' and 'certainty', but paradoxically and despite the significant levels of investment, autism research is noteworthy precisely because of its uncertainty and indeterminacy.

Examining the genealogy of autism research and diagnosis it is apparent how the field of genetic autism research and its definition of autism as a purely organic disorder, can be seen as emerging as an explicit disavowal of the psychoanalytic concept of autism as rooted in the mother-child relationship.

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4th December 2017
Bio News