I’ll try not to Godwin this post too soon but I suspect its going to be hard as its one of those rare occasions when the subject does feel vaguely fascist. Actually, more than vaguely.
In June this year the Times ran a story about a team of British doctors who were:
….preparing an application to the fertility watchdog that would allow them to screen out male embryos to reduce significantly the chance of a couple having an autistic child.
As boys are four times more likely to be born with autism than girls, couples with a family history of the condition want to ensure they have only girls.
This is objectionable on two levels. Firstly, it gives legitimacy to the idea that autistic people are of less worth than non-autistic people. Writing about similar plans in Business Week, Elizabeth R. Schiltz said:
Imagine the public outrage that would greet the publication of a study calculating the cost of not terminating pregnancies if it were broken down into a category such as family income. Although most of our civil rights laws now include “disability” in the litany of prohibited bases for discrimination – along with race, gender, and ethnic origin—our enlightened liberal commitment to diversity appears to go only so far. While we are willing to mandate accommodation to make jobs or public transportation accessible to a person with spina bifida, *the social cost of accommodating her birth is increasingly being seen as exceeding her worth*
This same idea was expressed another way in the not to distant past:
[A] philosopher told me about a Nazi propaganda film he’d seen, called “Freedom through Deathâ€. 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.
The British Council of Disabled People also are concerned.
Simone Aspis, parliamentary and campaigns worker for the British Council of Disabled People, said: “Screening out autism would breed a fear that anyone who is different in any way will not be accepted. Screening for autism would create a society where only perfection is valued.”â€
Cost and perfection. Is that what we’ve been reduced to as a species? How much money we’re worth and how close to Brad and Angelina we all look like? Consider the following from Ballastexistenz
I was accompanying a friend to the doctor a couple weeks ago, and we were sitting in the waiting room, both of us using wheelchairs. We had the following conversation, or something very like it (I won’t get the details right, but this is the gist):
Her (to my staff): We need to find you a place to sit down. I forgot, you’re chair-impaired.
Staff: Actually I’m okay standing.
Her (gesturing around the waiting room): Just look at all this furniture devoted to your special needs. Hospitals must spend thousands of dollars buying chairs for the… uh… chair-challenged. They require assistive technology wherever they go.
Me: Yes, as a matter of fact, you and I can take our chairs with us, but those poor walking people all have to find places to sit. Must be such a drain on society…
Funny how you can find truth in humour don’t you think? We all have a cost. Not just financial. To decide to attempt to eradicate people based on financial or labour costs is ridiculous.
One of my favourite (series of) book/s is Dune which, aside from being (alongside Lord of the Rings) the greatest fantasy/Sci-Fi books ever written, are also a study in how political power and the ‘power’ of absolute inflexibility and non-diversity inevitably leads to the stagnation of the species. We need change – as a species we _require_ it. Our success as a species was _born_ from our ability to adapt. To adapt we need new skills and new ways of being. Without them we have no flexibility and an ever dwindling series of options.
Now, aside from the incredibly stupid idea that ‘weeding out’ people we have no understanding of is a good thing, there is also the rather more practical point that this patent is based on the flimsiest and most ramshackle logic ever. The science team basically want to screen for male embryos in families that have a history of autism and if they find one, to abort it.
In essence then, this isn’t even an anti-autism piece of ‘science’ – its an anti-male piece of ‘science’. Just to put this idea into some kind of numerical perspective, here’s a quote from Wikipedia:
For families that already have one autistic child, the odds of a second autistic child may be as high as one in twenty
So a woman may have to go through twenty abortions to get her desired NT offspring. And even then there’s no assurances that the girl child won’t be autistic. Mine is. My great Aunt was. Lots are. Lorna Wing is on record somewhere as stating she believes female autistics are historically very under diagnosed.
Mike Stanton pointed out that even the process itself is fraught with peril. And for what? Absolutely no guarantees whatsoever. In fact there is good evidence to suggest that IVF increases the ‘risk’ of autism.
To make another comparison: How about aborting black children to reduce Sickle Cell Anaemia? Who in their right mind would stand for that? How about aborting the children of people who are hypertensive just in case they develop heart disease?
I’m not anti-abortion per se but this is utterly ridiculous. I know that Mike has corresponded with the lead author, Professor Joy Delhanty, in his official NAS role. I would like to add something pretty unofficial:
Professor, this is without doubt the dumbest and least humanistic application of medical science I’ve seen in quite awhile. Please stop and think about what you are doing.
Left Brain Right Brain 
Hi Kev,
This is a great post. Just a couple of points:
“For families that already have one autistic child, the odds of a second autistic child may be as high as one in twenty”
I’ve read that the odds of a second autistic child may be as high as 1 in 10 (Constantino JN et al, 2006).
“So a woman may have to go through twenty abortions to get her desired NT offspring”
Sorry to be pedantic, but I’m not sure about your math?
I’m not sure about my maths either ;o)
Please feel free to correct it – maths has never been a strongpoint of mine.
An interesting post indeed Kev. I think Ian is right about the math. The odds favor an NT offspring (not ascribing value, just probability). It would seem that the reverse of your mathematical suggestion would be true. A woman may have to go through ten or twenty NT pregnancies before the statistical likelihod of ASD appears. Of course those statistics are based on “What is ASD?”.
Well, if a woman’s chance of conceiving a second autistic child are 1 in 20, then 19 out of 20 times the baby she conceived would not be autistic, statistically speaking. Then, if one were screening only for gender, the chances of her conceiving a male child would be 50/50 for every attempt. So, every time she conceived a child her chance of it being male would be 50%. Technically, she could conceive 19 males and abort all 19 embryos before she was able to conceive a female, but that female might turn out to be the 1 out of 20 that was autistic. So, she might have aborted all of her NT boys to wind up with one autistic girl in the end. Makes sense to me.
Me and Alexander’s Mommy are contemplating on having a second child (money is an issue now with only me working and AM having left her high paying Controller job with a Nasdaq tech co.) and to be honest, I don’t know if I could raise an NT child. I don’t think I could relate as well to an NT child as I do Alexander. I wonder if others have had these same thoughts?
As boys are four times more likely to be born with autism than girls, couples with a family history of the condition want to ensure they have only girls.
This constitutes limited medicalization of the male gender as a whole. Someone could also make the argument that since the vast majority of serial killers are male, it makes sense to abort male fetuses as much as possible.
There is something wrong with this story.
I contacted the fertility watchdog and got this anser
“Dear Laurence,
Thank you for your comments which we received on 21 June.
To our knowledge, we have not received any application to discard male embryos that contain autism gene.
Please let me assure you that each license applications we received are not granted lightly. Each applications goes through a lengthy process and it is subject to peer scrutiny.
I am sorry the news of the application has upset you. I hope this email has assured you when receiving an application, we looked into all aspects that would be affected from the license granted.
With best wishes,
Joyce Chia
Trainee Communication Officer
Human Fertilisation & Embryology Authority”
The odds I believe can be as high as 1 in 10 or more for an ASD sibling. But that’s for your average family with an ASD child. I can only imagine the odds are a lot higher if, say, the dad is also known to be on the spectrum. I’ve heard of cases when the mom and the dad are both on the spectrum and they still manage to have an NT child, which is interesting and amazing in a way.
This is already being done in the United States, by means of in-vitro fertilization, implanting only female embryos. The government doesn’t regulate it.
And you’re right, “stupid eugenics” just about sums it up.
Joseph — all the males in my family for three generations are autistic. Although I am female, I’m probably the most autistic of the lot. My son takes after me. Somehow I also managed to produce a chatty daughter who loves shopping, shoes, and hanging out with a large group of friends. “Interesting” was definitely the word when she invited about 50 of her friends to our house for her birthday party a few weeks ago.
Aside from gender selection, IVF increases the chances of having an autistic child if one counts Prader Willi and Angelman Syndromes.
“Technically, she could conceive 19 males and abort all 19 embryos before she was able to conceive a female”
Assuming the 50% probability for male, the chances of this scenario are close to one in a half million. While technically possible, it’s highly unlikely.
Actual odds: (1/2)^19 = .00000191
If memory serves correctly, this is a step probability function, in which the number of abortions per woman would approach but not equal 1.
50% would have no abortion, 25% would have one, 12.5% would have two, 6.25% would have three, 3.125% would have four, etc., assuming probability of a male is 50%. Obviously real world conditions would alter the result (probability of a male is slightly greater than 50%, if these pregnancies are IVF then cost and administrative willingness might be limiting factor, and there is probably a limit to the number of IVF (i.e ovarian stimulation) attempts and abortions one can have before the next pregnancy becomes problematic).
Of course, realistically 19 males in a role would be highly unusual, but my father-in-law’s mother gave birth to seven boys in a row- the first identical twins.IVF procedures sometimes result in multiple pregnancies since more than one embryo is typically implanted, so it’s possible a woman might have only one abortion but abort more than one child. The point is, a woman has no way of knowing ahead of time that a child is or is not autistic based only upon gender. She can roll the dice and hope that statistics are in her favor, that by selecting against male embryos she increases her odds of having an NT child. She can go through all of this, and still give birth to a girl with autism. She can unwittingly abort NT male embryos in her quest for the perfect child. Then, there’s the possibility that while technically NT, her daughter might still have autistic characteristics, as my daugher does. This is just so wrong on so many levels…..
what would happen if the “selected” child was autistic anyway?
awww, shoot. I guess we have to try to -love- feed it anyway.
NM, do you have a cite for the increase in autism with IVF? I’m interested if you do.
There’s something that looks like Isodicentric 15 q or inv-dup 15 (vaguely looks like Angelman’s because the problem is in the PWACR) in my ex husband’s family. There are a bunch of very odd people all descendents of my ex’s mom’s mom (and maybe her mom). My ex is not diagnosed, as far as I know, but he’d likely get a PDD,nos type dx if someone could get a good history or look at the genes involved…
My extended family has some Asperger type people including the guy who co-invented Netscape and founded Silicon graphics…. my father’s cousin’s son. All the ASD folks in my family are descendents of my father’s father’s mother. And we all seem to have connective tissue issues along with the ASD or BAP features.
Anyway, point being, two very weird people were attracted to each other (me and my ex) and we had one very odd child, mostly like his/her father, and one really normal child. That kid and I get along fine. S/he is a little on the shy side with new people, but not too much. It’s hard to say how much of that would be from being raised almost entirely by me. My ex is outgoing (but weirdly outgoing). The mostly NT kid has a dysgraphia (bad handwriting) like me, only worse, and spells badly but can read perfectly. I irritate the spit out of that kid sometimes with my perseverations, but mostly we get along really well. One of his/her teachers in 4th grade noted how she could see how much my NT kid loved me by how s/he interacted with me when I went to the kids’ school. She said it was unusual, in her experience to see that with a single mother. I guess most single mothers are so stressed that their kids don’t feel comfortable with them or something. The teacher said she was surprised to find out that I was a single mom.
I don’t recommend single parenthood, but I’m saying with all the challenges I figured out how to parent an NT kid successfully. 🙂 They just need love, and more play time with other NT’s than we do.
The gene thing with my NT kid is really amazing. This kid never looked like either of his/her parents from birth on (who’s kid is this?), until recently when s/he started to look a little like me. My two kids look almost nothing alike, neither of them look like me, except skin color and hair color. Wavy hair is supposed to be dominant, my hair is wavy, my ex’s is quite curly. Our kids’ hair is straight. ? My eyes are brown, my ex’s are blue, we have green eyed kids (which is not surprising, my mom has green eyes).
If deaf parents can raise a hearing child, then ASD parents should be able to raise an NT child ok.
Bonnie Ventura said ““Interesting†was definitely the word when she invited about 50 of her friends to our house for her birthday party a few weeks ago.”
😮 …. Oh wow! … I thought it was bad enough to have a dozen teenage boys at our house for the Superbowl football game!
As it turns out none of us are autistic. My son’s disabilities are possibly due to seizures (the last one during a bout of dehydration when he had a possible rotavirus infections). He also has migraines… something that DOES run in the family (and there is a fine line between some migraines and seizures). Along with the hypertrophic cardiomyopathy (a physical abnormality of the heart that seems to run in families).
Over the years I met parents whose kids had had the neurologcal impacts that caused the speech disability by actually getting the now vaccine preventable diseases (like Hib and mumps).
So to add to “No Receipt, No Return”s question on what happens if the selected child is autistic… what happens if the anti-vax folks get their way and the historically primary reasons for disabilities returned (measles, pertussis, mumps, Hib, rubella, polio, etc, etc).
This is also one of those cases where eugenics can have a long-term result that is contrary to the intent of eugenics. When a woman in an autistic family aborts a male fetus, she’s ready to conceive again without having to wait 9 months, and she’ll probably want to. Female kids in this family have lower odds of being autistic than boys would, but they are probably also carriers. So the reproductive liability this family had due to males not being good at romantic conquests is ameliorated to a large extent. Therefore, these eugenic abortions contribute to an increase in the frequency of autistic alleles in the general population — not that I mind that part.
Julia : NM, do you have a cite for the increase in autism with IVF? I’m interested if you do.
IIRC, there is increased frequency of Angelman Syndrome and PWS (which are associated with autism) in children conceived through IVF.
http://bmj.bmjjournals.com/cgi/content/full/326/7382/184/e
Thanks, NM!
This whole situation is really … twisted.
There’s an element of hatred in destroying an aspect of one’s self. The hatred is not always visible as stemming from fear, because the inherent paradox can be repressed. This paradox of virtue by self-hatred comes from a double-bind disguised as social responsibility: “Don’t you want to have a healthy baby?†How could this seemingly innocent question be a double-bind, an unwinnable situation? If you answer Yes, then you are at fault for not doing/having done the deed. If you don’t want to do the deed, then you are a worthless [future] parent because you aren’t Doing The Right Thing.
If an embryo carries a genetic trait, then that means you were responsible by having the genes in the first place. If those genes are undesirable, then that can be described as the genetic equivalent to passing on the sins of the fathers to the sons. Screening embryos for hundreds of “bad†genes is essentially seeking to perfect and breed better humans. People are uncomfortable with the fact that we can’t “fix†everything with science or social engineering, and remove all traces of perceived imperfection …
Why stop at autism? I mean, males are genetically much more vulnerable than females – that whole Y chromosome is just a bad idea! More likely to have autism, fragile X, Muscular Dystrophy… the list goes on. Why not just bin the lot? Because they kill themselves off at a greater rate than females we have to give birth to more of them, which is plainly a waste of time and money that could better be spent on far more functional females.
If you read Dr, Geier’s patent for his Lupron protocol you can see the testosterone is at the root of nearly every disease known to man….