Good news- Spectrum 10k study has been postponed

I only just learned about the study from this post, but... and I know this will be controversial, but isn't greater understanding of autism a good thing for us? I understand the fears about eugenics, but so far as I know there isn't any technology sophisticated enough to choose what genes to "turn off" before birth. The closest I'm aware of is something called CRISPR, but from documentaries I've seen on the subject it cannot be used to make any kind of genetic selections about something like autism, or any form of learning disability or personality trait.

I'm happy to be corrected by anyone more educated than me on this, but as someone with a lot of issues associated with my diagnosis of autism spectrum I only feel disappointed. 

They won't turn off the genes before birth, they'll just terminate pregnancies that would result in autistic children, just like they do with tests for other disabilities.

They won't turn off the genes before birth, they'll just terminate pregnancies that would result in autistic children, just like they do with tests for other disabilities.

Forget the "racism" for a moment. I was born in the sixties, I've made a hell of a lot of adjustments to my attitudes that were taught to me over the years, and remember my friend (who's had 30 years of my way of thinking) invited me to his wedding... I refuse to accept or promote lies be they from fascists of old or the WEF thought leaders of today.

Simple economics says if you keep bunging extra mouths to feed into a deeply unproductive economy, something will break.

And this myth of the new arrivals being somehow "premium people" only holds up amongst those of my white brethren who haven't gone out and immersed themselves as far as possible into social or business interactions with those of other cultures. Most people who call me "racist" have less "other race" long term friends than I do... 

And to be fair, I've recently been watching a heck of a lot of 1970's sitcoms with a friend both for entertainment and also to analyse the social programming that the writers incorporated to help get us where we are now... They are designed to skew your thinking as well as amuse, (that's one reason why the entertainment industry is awash with money and I probably lapsed into a more 70's writing style.)

And that concludes the statement for the defence your honours..

I was abused too and an abortion would have quickly and easily prevented decades of misery for everyone involved. It wouldn't have done me any harm as I wouldn't exist. It would have been the best option for everyone, not least because it's always a much safer option than childbirth.

People should always have as much information as possible to allow them to make decisions about pregnancy. If even one abusive childhood can be prevented, the study has been worthwhile.

It would only be eugenics if the government passed a law saying you have to test for and abort autistic children. Given they don't even do that for much more severe impairments it seems like an extremely unlikely outcome.

The racism that has appeared in the other reply is disgusting. We should have open borders. Instead people simultaneously whine about our aging population while voting to stop young working age people coming into the country. Barmy!

HP35 said:

The people who abuse their autistic children often got pregnant deliberately though, so none of that is relevant.

You don't need to tell me, I am one of those kids who got abused, and I'm telling you it is relevant: Hate is derived from fear and ignorance for which the cure is education. (Better education about neurodiversity and disabilities and parenting could be part of the curriculum right after sex education and the LBGT talk.) Telling my abuser after their formative years ended didn't work, the best time to stop abusers being formed is in their own childhoods.

HP35 said:

I agree that people should be encouraged to think more carefully in general before bringing a child into the world.

Well yes.

HP35 said:

Carrying to term should always be seen as the exception, not the default decision when someone finds themselves pregnant.

And no.
We'd all be better served if the support and education was in place so that by the time a pregnancy does occur it is planned and due to occur in the best circumstances, and leave abortion as a last resort for true crisis cases, because abortion actually isn't a "fun ride" for the person who has to resort to one either.

It is political, that's what eugenics is, for all the people who bemoan "the UK can't support more than X population" you'd think the government would have schemes handing out condoms on every street corner. But they aren't, because that's just the narrative, they only want less of certain populations, like immigrants, the government don't want more of them either unless they come with several degrees and at least a quarter million in savings right through the gate.

I really am growing tired of this tbh, and really disapointed to find I have to explain to people why opening our community up to entertaining borderline or literal n*zi ideologies is dangerous. Because it didn't start with just us as the "undesireables" and if allowed it won't stop with us either. So this will be my last reply on this thread specifically.

You can educate and help people to not have children they hate at the same time. I don't know how you'd stop people having kids at all.

HP35 said:

The best way to prevent child abuse is to do everything possible to make sure that children don't end up being born to people who hate that kind of child.

No, it would be better to educate people to not hate any kind of child! Or to not allow people who hate any kind of child to have kids at all.

The people who abuse their autistic children often got pregnant deliberately though, so none of that is relevant. Autistic children don't deserve to be brought into an abusive childhood to punish people for their prejudice. We are people, not moral lessons. The best way to prevent child abuse is to do everything possible to make sure that children don't end up being born to people who hate that kind of child. That includes screening, where possible.

I agree that people should be encouraged to think more carefully in general before bringing a child into the world. Carrying to term should always be seen as the exception, not the default decision when someone finds themselves pregnant.

I know what you mean but also there's no less than 17 methods of preventing it from getting as far as an unwanted pregancy in the fist place, and all are free on the NHS. https://www.nhs.uk/conditions/contraception/ Now I am not unsympathetic to failed methods, but knowing victims of failed methods, condoms and then plan b due to medicine interaction, but it's not like plan C (abortion) fails, at least it is virtually unheard of. At that point it comes down to ideology. And I never thought I'd say this but my Gran's archaic Catholic Python-esque "every sperm is sacred" b*llocks is comparatively still more loving than the "autism is like a soul robbing demon" rubbish. All I'm suggesting is it's not actually that unreasonable to call out when someone goes from happy to be a parent to unhappy to be a parent just because there's "a chance" the fetus could not be the NT golden child they envisioned. I also think it's pretty selfish of a parent to expect a "perfect" child to their exacting standards when, even if neurotypical there's every chance the child wouldn't live up to the parents expectations anyway. Because let me tell you my own Dad bangs on more about dispointment in the fact that I voted Lib Dem in 2010 than the fact that I'm autistic. And that's hilarious for all sorts of reasons.
Also with 17 other methods of avoiding an "unwanted preganancy" I really don't think lack of an 18th is the issue here. Because a screening for autism won't result in less unwanted "pregnancies" it will only result in less unwanted autistic pregnancies specifically. And that is literally diving head first into the eugenics dirge bucket.

Every child deserves to be a wanted child. The ideal would be for bigoted people to not have kids at all, but I don't know how society could enforce that. Making it as easy as possible for them to avoid being parents to the group they are bigoted against is something that can be achieved and can prevent a huge amount of suffering and abuse.

HP35 said:

Which is a good thing, surely? If parents feel strongly enough that they don't want an autistic child that they're willing to terminate and start over, it would be child abuse to force an autistic child to grow up in that family.

No. Not really, that's like blaming the potential victim rather than the abelist mentality of and/or the perpetrators of that abuse. It's better to terminate abelism and social innequality that denies struggling families the support they need rather than to terminate the autistic child. The duty should be on parents to be good parents, not on the child to be "not autistic or not exist".
This isn't a prolife argument either, if people don't think they can cope with parenthood then they shouldn't be parents that's not in question, but if they would be happy to have a non-autistic kid but not an autistic kid I question how much they really want A kid, autistic or not, because kids of the best kind of parents know that that kind of love is unconditional. This is exactly why LGBT people were so against scientists trying to find a "gay gene" too. Because it's not for our benefit, but the bigoted parents who view our existence as the tragedy rather than the society that makes it so.
If parents are ready for a kid then they need to be ready, because even if you could test for autism, there's no guarantee it will be %100 accurate (like the Downs test is just a "likelihood"), and it's not a guarantee that if you get a Neurotypical kid it will be easy. It could be something else, against odds even the Downs test misses some*, kid could have Downs, it could just be a really bratty NT kid, and by the time you find out it's "too late". If you aren't ready you shouldn't let it get as far as taking an "Autism test" to "know for sure". I never took a downs test for mine, I was ready to take my child as it comes for better or for worse. If I wasn't prepared to handle it come what may the only test I would have needed was the one I peed on.

*infact the downs test regularly misses some, false "likely"s as well as false "unlikely"s, a step daughter of mine was tested and showed as "highly likely to have Downs Syndrome" thank goodness her mother knew the meaning of unconditional love, not only did she keep her but she didn't even have downs. She's alive and well and one of the loveliest people I've ever met. ( And I have no doubt would be just as lovely if she did have Downs.)

Which is a good thing, surely? If parents feel strongly enough that they don't want an autistic child that they're willing to terminate and start over, it would be child abuse to force an autistic child to grow up in that family.

Well the paper I quoted was actually a meta analysis of several studies but either way if autism is at least 50% heritable (and its probably a lot more) there is every reason to think many cases could be inferred from genetic analysis alone. Just because the same level of genetic analysis necessary to infer autism could possibly infer intelligence it doesn't mean parents would be offered that complete spectrum of information. As you say people might feel giving parents predictions of intelligence, even crude ones, might be a bit eugenics like but sadly far more people would be comfortable passing on a prediction of autism. 

At the end of the day any autism 'test' would be a product with a one or 2 number output generated by a computer program no one outside of the manufacture really understood, certainly not the doctors giving test results to parents.

They might use something like ensemble machine learning on the gene SNP results. X% of the neural nets say autism, Y% are indeterminate, this is associated with Z% likelihood of autism. Something like that is what they'd get back. Sure you could get the same SNP results and run them through a different set of appropriately trained neural nets to get a prediction of intelligence ... but even if anyone creates such a tool it wouldn't be offered clinically.

The point about the paper on micro array screening I quoted is they were arguing for its adoption to replace screening that is already done using simpler methods. Let me put it this way. The chromosome micro array analysis is now common enough hospitals have information pages for parents explain why their children are being given the test. (www.nationwidechildrens.org/.../microarray-analysis-test) Biotech is getting cheaper. In ten years expect micro arrays to be routinely used in health care.

That is one study, in statistics -dependent studies a single study is rarely definitive. This paper gives a rather different spin, though it found genetic factors to be of more importance than environmental: https://pubmed.ncbi.nlm.nih.gov/25738232/

We know that for a small number of people there are certain genetic deletions and duplications that cause autism. The problem for most autistics is separating the wheat from the chaff, deleterious from non-deleterious alelles and other genetic differences. That is going to be very difficult. As autistic traits are entirely embedded in humanity at large, I thinkthat a straightforward, "there is an X% chance your child will be autistic" algorithm is unlikely. More likely will be, "your child has an  X% likelihood he will be an excellent visual artist, a Y% chance he will be a gifted mathematician and a Z% chance he might be autistic. How do you want to proceed?" This is far too close to "designer baby" eugenics for it to be acceptable to most societies. The interrelationship of autistic and gifted traits will make extirpating one without extirpating the other almost impossible.

I think that microarray screening will be expensive, at least in the short to medium term, and this will restrict its diagnostic use. The paper you cite was not using microarrays in a normal clinical setting - it was not a service - and it was looking at quite obvious departures from normal foetal development. Autism is considerably more complex and subtle.

That’s not my understanding and tbh the research Ive read doesn't support it https://pubmed.ncbi.nlm.nih.gov/26709141/

not having a simple yes no answer isn’t an issue. If an algorithm can tell parents ‘based of your child’s genes there is an X% chance he’s autistic.’ Some parents will still abort on that basis.

as for micro arrays for prenatal screening this is already very much in the works for other conditions bmcpregnancychildbirth.biomedcentral.com/.../s12884-020-03368-y

Not really.

Down's syndrome is wholly genetic in origin, autism has environmental factors in addition to genetic ones. Some identical twins exist, where one is autistic and one not. A genetic test would not have any direct application to the environmental causation aspect of autism.

While micoarray testing is feasible on a research scale, it would be expensive to produce and use for diagnostic purposes, and is unlikely to produce 'yes/no' answers.  Most autism, or its genetic component, is caused by a particularly high concentration of alleles that are found in the general neurotypical population. Any microarray-type test result is going to be very complex and difficult to interpret; the effect of each individual allele would have to be ascertained to separate the deleterious from the advantageous. Then the cumulative effect of many different alleles would have to be estimated and a clinical opinion given. Add to this epigenetic involvement in autism is very likely, therefore a whole extra level of complexity may be needed for any test. This is what I meant by a "simple screen" being unlikely.

your first point is rather wrong. Micro array and sequencing tech is becoming more and more available. Testing for 1000 mutations at once is no longer that hard. The 2nd point is more complex, there seems to be a significant overlap between pro intelligence and pro autism genes. However with enough research, the kind of research this study is doing, you might be able to infer which combinations of genes lead to autism and which to intelligence (and which to both.)

Autism is known to be complex, Down's syndrome has a 'simple' cause - an entire extra chromosome. Down's is easy - relatively - to screen for, Autism, being, as we already know, multifactorial will be almost impossible to create a simple screen for. Plus we know that some of the genetic factors leading to autism are beneficial, so removing autistics from the community would be counter-productive. All that stymying a study conducted in a liberal demorcacy (or several) will result in, is something similar, but worse, being conducted in China or somewhere else where ethics are non-existant. I am far from happy at this news.

That’s true I see that, there was a failed attempt to change the law on this regarding Down’s syndrome I think? 

It’s an extremely complex issue. I mean we support women on abortion rights when those decisions are made for other reasons, when they they are not in a position to be a mother, and we wouldn’t necessarily ask questions about why. If I remember rightly in the case of Down’s syndrome the stage of pregnancy at which an abortion can be carried out is later but I can understand, as someone who has worked to support adults with Down’s syndrome and severe autism, and with all respect and compassion towards vulnerable adults, I can understand why women and families may not feel they can be the right parents to a child for whom the risk of severe autism is higher, just as when the risk of other factors effecting parenthood is higher - employment issues, poverty, age, any number of difficulties we would be empathetic towards women and families about in light of the right to have an abortion.

I say this not to be controversial but because I don’t think I can ever condone actions taken because of fear of knowledge. And to learn from people with differing opinions if I’m making a mistake. But even as an autistic person myself I have some faith that in a sufficiently educated society we will not experience an eradication of autistic babies when we know people on the spectrum bring such needed contributions to society. 

Indeed Down’s syndrome is an excellent example of this. Very easy to screen for because the anomaly involves an entire chromosome not just a few small localised mutations.

Down’s syndrome children are widely aborted so unless the government was willing to make aborting a foetus because it is autistic a crime there is always going to be anxiety about genetic analysis of autism. 

in fairness they very nearly did make sex selective abortion illegal so it’s not out of the question.