Ethics and autism

The recent media debate about the ethical questions that would have to be dealt with if a reliable pre-natal test for autism became available was notable for one reason. It acknowledged that there was an ethical dimension.

In part this rests on our changing perceptions of autism as more autistic voices are heard in the media. There is still a long way to go. As far as I know, no autistic persons’ views were heard during the broadcast debates. One parent from the Autism Hub, Sharon from the Voyage took part in a radio discussion and made an outstanding contribution by comparison to the experts on the panel. And the Guardian did publish an excellent piece on its website by Anya Ustaszewski. I do not know if this made it into the print edition. It deserved to.

This is a short piece because I am in the midst of annual reviews where I sit down with parents and discuss their child’s progress and what we can do to improve their prospects for the future. I love these meetings. They are a chance to celebrate my pupils’ achievements and consider the wishes of both the parents and their children who all make some contribution to the meeting. Pre-natal testing will not be on the agenda.

January 21st, 2009 Posted by Mike | ethics, genetic testing, journalism | 6 comments

My Background

ACT NOW FOR AUTISM

United Kingdom Autism campaigners are working together to ACT NOW about the proposed benefit cuts and medical assessments. We have launched a petition which we intend to deliver personally to No 10 Downing Street. Please sign here and show your support.

I am Mike Stanton. I live and work in the UK where I teach children with severe learning difficulties, many of whom are autistic. My adult son is diagnosed with Asperger Syndrome. I am a member of the National Autistic Society. I speak and write on autism. My book, "Learning to Live with High Functioning Autism" is available in a Spanish translation, Convivir con el Autismo. I have also contributed a chapter to Asperger Syndrome in Adolescence edited by Liane Holliday Willey.

ACTION FOR AUTISM is a reaction against names like Action Against Autism and Defeat Autism Now! Names like these suggest to autistic people that we are against them as people. You may not mean that. But if you care about autism you ought to care about the feelings of autistic people and not use language that makes them angry or upset. If you disregard the feelings of autistic people do not be surprised if you are disregarded.