Monday, December 4, 2017

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

Epigenetics, in our view, is not a mere replacement of one explanatory model by another one. One does not want to bring back the 'mother blaming' of the 1960s and 1970s. Neither does one want to replace a simplistic single gene explanation of autism by a simplistic single environmental factor, such as, for instance, in the MMR vaccine controversy of the early 2000s. Ethicists and scientists alike should make sure that no black and white conclusions are drawn from epigenetics studies, and that this new field is not simply replacing one culprit (the autism gene) by another (the autism environmental pollutant). In fact, the more nuanced view of human biology that is suggested by epigenetics may help move the discussion from the search for causes and culprits to experiences and understanding.

Who we are and the problems we face are the result of complex interactions of our genetic disposition with our physical and psychosocial environment. As such, problems are never problems of the individual (Barad 2007). For autism, this may suggest a view that a genetic or neurological vulnerability, in combination with environmental factors (both physical as well as psychosocial) can cause the difficulties of autistic people, and that the search for causes solely in the individual itself is doomed to fail.