Simon Baron-Cohen wrote an unconvincing editorial in response to autistic people who worry that genetic tests for autism will result in people eugenically aborting autistic fetuses, like what happens with Down syndrome already.
Genetics plays a large role in causing autism, so knowing more about which genes influence it could allow a better understanding of the condition.
It is a rapidly unfolding area of research, but there is a problem. As director of the University of Cambridge’s Autism Research Centre, I am increasingly aware that more and more autistic people don’t want to take part in genetics studies.
It seems to be happening because of a fear that the agenda is eugenics – find the genes to identify potentially autistic babies in pregnancy, and terminate such pregnancies. These fears are understandable if we look at how this has happened in the case of Down’s syndrome.
Some people also worry that genetics research will lead to genetic engineering to “normalise” autistic people. Again, I would be horrified at this application of science, because it doesn’t respect that people with autism are neurologically different, and like any other kinds of diversity (such as hair, skin or eye colour, handedness, or sexual orientation) should be accepted for who they are.
My colleagues and I are opposed to any form of eugenics. The worry though is that if people equate autism genetics with a eugenics agenda, valuable progress on autism genetics could be slowed down.
Today, autism is known to be strongly genetic, with heritability estimated at between 60 and 90 per cent. Autism is not 100 per cent genetic – if one identical twin has autism their co-twin doesn’t always have it. The obvious conclusion is that a genetic predisposition interacts with environmental factors.
Feel better? I don’t.
It doesn’t really matter if Simon Baron-Cohen is a Good Person who’d never support eugenics. The question is what’s likely to happen once we have enough information to start implementing eugenics. If Simon Baron-Cohen is personally horrified, that doesn’t stop a private company from offering prenatal screening.
Baron-Cohen is the one going around spreading the idea that autistic people lack empathy, which is part of why someone might want to abort us in the first place. He’s basically washing his hands of any social responsibility associated with his work.
As scientists, our agenda is simply to understand the causes of autism. This has intrinsic value, because it contributes to human knowledge and will hopefully deepen autistic people’s understanding of their own identity.
Thanks for the help with my identity!
I’ve learned identity-impacting information from genetics testing: my Y chromosome probably comes from someone who raped their slave. Certainly it’s interesting that autism is related to preeclampsia and vitamin D deficiency. It’s neat to know that I have this or that SNP. But I’m pretty sure I could’ve lived a good life not knowing those things, and they didn’t fundamentally change something deep.
Why is Simon Baron-Cohen in such a hurry with his genetic research agenda? How about we work on the acceptance of autistic people in society first, and then we indulge our intellectual curiosities? Wouldn’t that be safer and more socially responsible? In a world where actual Nazism is becoming socially acceptable, maybe the public can’t be trusted with that sort of information, so it shouldn’t be produced.
Genetic knowledge could also change lives for the better. For example, one clinical use of gene discovery that we think is ethical would be early detection of autism, with a view to early intervention, if parents opt for this.
This isn’t at odds with the “neurodiversity” view, because in an ideal world early interventions would target only symptoms that cause disability or distress, not autism itself. Examples of unwanted symptoms might be language delay, epilepsy, learning difficulties or gastro-intestinal disorder.
Prenatal screening just carries “early detection” to its logical conclusion.
What are these special autism interventions that are so different than just loving your kid, paying attention to them, explaining stuff to them, etc.?
Of those “unwanted symptoms”, the only one that applies to me is gastrointestinal issues. Why not focus research on epilepsy, language development, etc.? He’s playing fast and loose with the definition of “symptoms” here, because those are common co-morbid conditions. They’re not autism-defining symptoms, which is how a lay person could be expected to read this.
Another advantage of early detection might be better early support for children who are vulnerable to becoming teenagers with poor mental health. If you leave an autistic child without the right support and they are expected to cope in an education system that might not fit their learning style, or if they are bullied for being different, you end up with a child who feels like they are failing. Or a child who loses self-confidence because they are abused and manipulated by others with more “street smarts”.
What’s he trying to say here? If you don’t intervene early, your autistic child might turn out “different.” It’s implied that intervention will prevent bullying by normalizing the child. Why is it easier to study hundreds of genes and their interactions than it is to get people to stop bullying us?
We at the Autism Research Centre have no desire to cure, prevent or eradicate autism. I hope the autism community will be willing to trust researchers who nail their colours to the mast in this way.
Nope, sorry! The editorial doesn’t honestly address the actual concern about consequences. It just insists on Baron-Cohen’s Good Person-ness. It hasn’t done the one thing it would need to do in order to earn trust: explain why things would be different for autism than Down syndrome.