Estee has just posted an excellent piece on The Economy of Pity. I was particularly struck by her reference to Dr Buxbaum and the possibility of a prenatal genetic test for autism. There is more on this in her earlier piece, Autism and Paradox.
If advances in genetic understanding do see off the biomedical curebies this creates a new set of problems. The curebies have already created a situation in which autism is seen as a devastating disorder. Severe expression of autistic difficulties in childhood is presented as the norm for all autistics of whatever age. Early intervention in the form of ABA/IBI is being trumpeted as a medical necessity.To judge from media reports this picture is becoming the popular view. Prenatal testing will inevitably raise the question of abortion. If autism is so horrible why bring autistic children into the world?
By coincidence I received a newsletter from the Human Genetics Commission this week. I am a member of their Consultative Panel and they have just asked for my views on
- Whether there should be a law to prevent genetic discrimination (for example, like there currently is for sex discrimination) ?
- Whether you feel that such a law should exist, what should be included in the legislation and how could ‘genetic discrimination’ be captured?
- Whether you can suggest other ways in which genetic discrimination could be tackled?
The government is also creating an electronic database of health care records. The Human Genetics Commision has asked me how I feel about genetic information being included in such records. They are concerned about access to this information by healthcare professionals, in particular “who [...] should be able to access it and in what circumstances?” There is also the question of family history being included perhaps in a genogram and thus other family members’ medical history being available to healthcare professionals who look up an individual’s records.
Also this week I read an email on an autism list from a parent who was told by an educational psychologist that their son would never achieve his full potential because of his Asperger Syndrome!
I apologize that this is not a particularly coherent or polished entry. But I just felt the need to raise concerns about the impact of advances in genetic research coupled with persistent negative images of autism.