Autism Acceptance or Genetic Testing?

The Sunday Times has a story headlined Doctors want to screen out embryos with autism. There are no genetic tests for autism so doctors at University College Hospital are proposing to screen for male embryos using preimplantation genetic diagnosis (PGD) because boys are four times more likely than girls to be affected by autism.

Joy Delhanty, professor of human genetics at University College London medical school, said couples would undergo the treatment only if autism had inflicted severe suffering on the family.

I find this particularly disturbing. At present PGD is only licenced in the UK for highly heritable, life threatening disorders. The Human Fertilization and Embryology Authority have published a list of such conditions. To extend this to autism when it inflicted severe suffering on the family is at best an unfortunate turn of phrase. At worst it lends credence to the "trainwreck" mentality of those who see autism as an unmitigated disaster that has to be eliminated at all costs. There is already a disturbing trend for parents who kill their autistic children to be seen as unfortunate victims of their child's condition. When Alison Davies jumped to her death with her son Ryan her sister described it as "an act of love." the Times dutifully reported her words under the headline

A mother's leap of love

Alison Davies’s fatal jump off the Humber Bridge with her son Ryan was a selfless act to end their torment, her sisters tell Deirdre Fernand

Mike McCarron, the grandfather of Katie McCarron, a three year old autistic girl who was killed by her mother has had to struggle to to get his granddaughter's story told in the face of media sympathy for the mother. He has challenged parent groups who have tried to exploit Katie's death to argue how terrible life is for the families of autistic people and how we need more services to prevent desperate parents from carrying out future "selfless acts" of murder.

By seeking to offer PGD to parents concerned about autism, Professor Delhanty and her team seem to be confirming that autism is every bit as bad as the diseases that are currently screened for. They are saying, in effect that if you are going to be autistic it may be better if you were never born. This must contribute to the belief that parents who kill their autistic children, and there are many of them, are in some way justified.

According to the Human Genetic Commission report, Making Babies: reproductive decisions and genetic technology PGD costs between 4500 and 7000 pounds sterling.

1. Typically a mother has ovarian stimulation to collect 12 eggs.
2. In vitro fertilization produces 10 embryos of which 8 may be suitable for biopsy.
3. Seven are successfully diagnosed and 2 are normal.
4. One is implanted with a 15% to 20% pregnancy rate per reproductive cycle.

So a lot can go wrong. Making Babies also points out that very little is known about the safety of PGD. only about a hundred children have been born this way in the UK. There may be a 1000 worldwide. It says

Long-term follow up of children born following PGD is important if we are to establish that embryo biopsy does not cause subtle damage to children. Follow up research in the UK is currently hampered by confidentiality requirements of the HFE Act. We recommend that the Human Embryology and Fertilisation Act be amended to permit more satisfactory and systematic follow up of all children born following PGD, and that the Medical Research Council should support appropriate research. (page 47)

There is a small risk to the mother of ovarian hyper-stimulation syndrome when eggs are taken for in vitro fertilisation. This may result in hospitalization and in one case (out of 500,000) the mother died. So PGD is not something to be undertaken lightly, as Professor Delhanty says.

Normally we would not consider this unless there were at least two boys affected in the immediate family. We would be reducing the risk of autism. Couples are not going to undertake this lightly when we explain what they are going to need to go through.

I am not sure how much Professor Delhanty knows about autism in addition to her experience with the families who have approached her for PGD. A recent TV broadcast about the Jackson family shows totally different presentations of autism in Luke, Joe and Ben. If you have two autistic sons there is no way of telling what form the autism will take if it is present in a further child. And even if you could tell it would not help. What are you going to do? Implant the Asperger and reject the Kanner embryo? My Asperger son was having such a miserable time at school that he envied a young man with classical autism who was non-verbal and liked to flap because he was happy. But the message I get is that the future happiness of the child is not a factor. Rather, it is the impact on the family of having another autistic child.

I am also concerned about the impact on a family who go through this arduous process. What if they have an autistic daughter? Having gone to such lengths to avoid another autistic child how will the parents react to her? And if she isn't autistic will having a normal little girl to love affect their feelings for her autistic siblings? How will the boys feel if they think that their parents in rejecting autism are rejecting them? Will the parents place all their hopes on their daughter? Will she feel pressured to succeed in all the things her brothers struggle with?

These are questions that I hope are addressed by Professor Delhanty and her team while preparing their application to the Human Fertilisation and Embryology Authority. She stresses that

Couples are not going to undertake this lightly when we explain what they are going to need to go through.

I believe that couples who are so desperate for a normal child that they are willing to accept the risks associated with PGD actually need counselling and support to accept their autistic children before they are offered help to conceive a non-autistc child. Estee Klar's Autism Acceptance Project would be a good place to start.