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.

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26 thoughts on “Autism Acceptance or Genetic Testing?

  1. Hi Mike

    Please allow me a bit of off the particular topic you presented here, that is extremely important in my opinion.

    I wish you a Happy Father´s Day.

    Best regards

    María Luján

  2. Mike,

    Excellent discussion of a very important issue. It seems we are now past the point of “what if autism could be presented” and at the point of “should we allow autism to be prevented.” Is it a personal choice that should be given to parents, or is it a choice that should be made by ‘society’ (whatever that might mean)?

    I see some very interesting debate – and invective – across the autism blogosphere in the days to come. Thanks for helping me get the thoughts going in my mind.

  3. Thanks Mike. So not only are they discriminating against the male sex, they think selecting gender will reduce the risk of having an autistic child? Did i read this right?

    Oh by the way, don’t they use Lupron to stimulate egg production? Nasty side effects I hear.

  4. Brett: This is not a prevention for autism. It is a prevention of male babies in families who already have autistic children. It’s not the same.

    Under that scheme, my non-autistic brother would never have been born, and I would have. And I’m considered (by people who use silly but typical measuring sticks) to have a more ‘severe’ form of autism than my brother does.

    So it’s not even really an autism-prevention method, it’s a boy-prevention method.

  5. This is appalling. First of all, how can autism ‘inflict serious suffering on the family’. Then how can this be used as an excuse to prevent the birth of boy children. I’m surprised that such horror is coming out of UCL(where I studied). I had a lot more respect for that university than to think such, what else can I call it, but such crap, could be undertaken by one of it’s academics. I’m going to tell everyone I know with a connection to UCL about this.

  6. Mike will you join me some time in a personal protest at this hospital, you know where it is, not far from the Ibis Hotel. I am sure we could arrange something at a future NAS meeting, press being suitably informed and all.

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  8. thanks Mike and thanks for the link to Virginia Bovell’s excellent article. A couple of weeks ago the New Scientist had an “Ethics Professor” putting an argument summed up on a “bio-ethics” website thus:
    “We argue that in a society where couples have considerable autonomy relating to decisions about the fetus at least until viability, the routine restriction of PND for minor genetic abnormalities would be an unjust infringement of individual liberty.”
    This is official ethics, even scarier when put together with the non-person thing as exemplified in this passage from the Hobson book The Cradle of Thought : “We have also learned that without the propensity to take attitudes towards one’s own mental as well as physical characteristics – a process that involves identification with others – we would not acquire the specially human form of self-reflective awareness. Although the picture in autism is patchy rather than absolute, especially in very able and articulate individuals with autism, it teaches us something about the Jamesian distinction between the consciousness of humans and the consciousness of animals.” P238

    I showed this passage without comment to two friends, one a philosopher the other a sociologist. Their reactions were identical: this is the argument behind Nazi exterminations. The philosopher told me about a Nazi propaganda film he’d seen, called “Freedom through Death”. It featured golden haired youths clad in white, wheeling drooling [non]persons around in wheelchairs while the audience was asked to consider how much labour was being wasted on keeping the droolers alive.

    Plus ca change, plus c’est la meme chose.

  9. btw the Human Genetics Commission, headed by Helena Kennedy was set up to look at ethical and other issues around genetic screening etc. It has consulted with many bodies including Mencap, but they have had no input from the NAS nor any other organisation concerned with autism. Surely with its involvement with huge well funded research projects into the genetics of autism the NAS should be represented.

  10. very good news Mike that you are on their consultative panel – they didn’t tell me about you when I inquired.
    Were you on the panel as a representative of the NAS?

  11. I applied as an individual with experience of genetic conditions both as a parent and a teacher. The NAS generally communicates with bodies like the HGC via professional staff

  12. With regard to the daily mail article, I registered a protest with the Human Fertilisation & Embryology Authority.

    The reply I got was to the effect that no application for a licence has been made to discard Male Embryos for families with an autistic member.

    Somebody somewhere is not telling the truth about this, so has the hospital applied or not, and if so for what has it applied?

    Well I shall have to wait till Monday to confront the hospital about this.

    Pity the NAS is being spineless over the issue, they could save me the bother.

  13. Indeed I am growing rather sick of the way the NAS makes appointments to exterior bodies from staff, and NT staff at that, I have made my feeling known to both board and Council about this, they are passing up significant areas of expertise, but it is of course a “control” thing, staff are under contract.

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