Autism and family history test before birth

Asd is a neurological developmental condition it cannot be picked up on an ultrasound, infact the only clinical test that can be done which picks up most cases (though not all) is a FMRI and is no use to children or those people who can't handle the noise or clostiphobic environment, nor those who lack the mental capacity to answer the questions.
The dr was clearly speaking about his heart.
I do hope that any heart issues have been resolved or are not an issue afterall

I have always wondered about this. DS14 is diagnosed with ASD, ADHD and PDA. He is mostly a fabulous human but life with him is constant negotiation and adjustment.
At my 12 week scan I was advised to have an amino (nuchal test high risk for Downs). Came back chromosomally normal. At my 20 weeks scan the sonographer identified a heart condition, was referred to a specialist and to this day I can still hear her saying “well, something’s not quite right, but I’m not sure what. I suppose we’ll find out when he’s born”
When he was born (planned c-section) he ended up in scbu for a week because he wouldn’t breathe or feed on his own.
I have always wondered if what they were seeing were things that are actually due to ASD, but 15 years ago (or even now) not things that could be identified.
For context, there is a family history of ASD on both sides, and the more I learn about it, the more I realise that DS18 also has very many ASD traits.

Also, I haven't read the full thread, but any test results have to be taken in context of them being an indicator but not necessarily the definite outcome.

I have a child with autism and ADHD and another with ND traits. I chose not to have invasive testing before birth as I very much wanted children and knew that even if I had a child with a disability, I would not terminate. However, I did have (non invasive) scanning. The very distinguished prof was extremely keen for me to have invasive testing, as my second child was 1 in 11 chance of a severe disability; it was my right to refuse; she is wonderful (and not disabled).

However, I would absolutely support the right of other women to make different choices.

No, it isn't. It's very important to underline that eugenics isn't something the demonised Other did and we Good Guys didn't. For one thing it stops all this "only Evil Nazis want this, it'sthe first go to thought therefore I win" rubbish and to recognise the immense pressure Society can put on parents in various ways.
As for Right to Choose, it is perfectly possible to think someone should have the legal right to choose something one thinks of as a bad idea. I'm not about to campaign to ban hang gliding, to use a slightly flippant example.

No it's not.

The combined test picks up 85% of babies with T21, the NIPT test is 99% accurate and an amnio is almost 100% accurate.

Your sample size of 1 counts for bugger all.

Stop spouting absolute nonsense online.

As we see here its not necessarily the case all /many would abort.
If it is the case more older parents have autistic kids then it may just reset the balance.
Having the info would make a difference in family planning for siblings etc. Most people probably have around 3y age gap.
In very few situations i know did parents have time to realise dc1 was autistic before having another child. Certainly in uk with long wait lists and wait and see approach.
In fact only 2 kids i know here had diagnosis by 5-6.

It wouldnt be eugenics if say asd were caused by diet coke in pregnancy and everyone avoided it.
Even with aspergers it can affect parents working if the child cant cope with wrap around. And secondary age some out of school as cant cope.
Not to mention having a child not sleep for 3years etc.

I have 4 sons with asd/suspected asd and one son who doesn't have it, but has other SEN. My chances of having a non SEN child are pretty much zero and my chances of having a child without autism aren't great either. My dc are somewhere in between the "bit quirky and with super powers" type and the "non verbal and still in nappies" type. All 4 are classed as high functioning, although with DS5 his autism is very pronounced if that makes sense so he can't always show that he has average to high intelligence as he is too busy stimming, having meltdowns and trying to eat the plaster off the walls. Oh and he hates writing, and school in general. He would like to be friends with other children but they mostly find him annoying. TBH I think there should be another category for people who have severe autism but no learning disabilities and another one for people who have autism with mental health problems.

Anyway, I think it would be really useful to have an in utero diagnosis of autism. 1 of my autistic children reacted badly to the ctg monitor and another reacted badly to the induction process. If I had known they were autistic at the time, I would have done things differently. Also the diagnosis experience has been a nightmare x4 and we are still going through it with all support being too little too late. A blood test while I was still pregnant would have been brilliant although I would still have kept them all, despite the lack of sleep. Not judging anyone who would have made different choices though.

I thought of Canada (maybe because I have a family link to Canada) where First Nation women were being forcibly sterilised long after the Nazis were defeated. It was even reported in the 21st century.

I’m not ‘determined to be right’. I am not the only one on this thread who found the link you made distasteful. You did not state that was not enough for you, you made an absolute statement - perhaps without an awareness of how it came across (a generous assumption).
Are you really so lacking in awareness yourself that comparing a woman choosing to terminate a pregnancy as a result of medical test results to eugenics (which is absolutely the parallel you drew) is downright horrible?
But then - your lack of awareness is not mine to fix, though, is it? 🙄

It's not disingenuous, because I had the Swedish model in mind when I posted it - they would put autistic folk (among others) in mental institutions, and then make sterilisation a condition of release.

Your lack of awareness is not my responsibility to fix.

Of course it does, because you're determined to be Right On The Internet.

If you're bothered about what I actually think, though, that's the criteria I'd apply to myself. Not other people.

I’m so sorry to hear that was your experience - that behaviour from the doctor was inexcusable.
As you say - the right to choose should be absolute and free from pressure on either side of the decision.

My son has autism and if there was a reliable test that would have informed me how badly it would impact him, I would have terminated my pregnancy. It's a shame that all the DM's of the "high-functioning" "quirky but bright" autistic kiddos can't see further than their own noses, but my life and my DH's has been irretrievably ruined by DS' autism. I haven't had a full night's sleep for 7 years, for starters, and I am still changing nappies.

You either believe in the right to choose, or you don't. (I very much do!)

At nearly 40 and pregnant I ended up crying as I was so distressed at the pressure a doctor put on me to have amnio as "time was running out" for me to abort if the result was positive for DS. A midwife had to intervene.

A right to choice is great if no one is allowed to put pressure on for their point of view.

We’ve just struggled to get answers around a different genetic condition that can be tested for and it’s actually a really difficult discussion in genetic counselling. Something that helped me was thinking about the low chance of genetic condition v the low chance of a genetically healthy but physically very unwell baby. My first had a non-genetic condition that nearly killed him, it couldn’t have been predicted, so I couldn’t guarantee his health even if I’d genetically tested and been counselled etc.

Equally, after an adult diagnosis of ADHD due to realising one of my DC has it, we’ve realised they also have some symptoms fitting autism and I’m now also looking at adult diagnosis of autism. I find some things excruciatingly difficult - meeting new people, changes, too much noise, certain touch, eating with others. I’m also a special interest kind of girl. However, I run a successful company, am a published poet and have good friends. The DC who shows symptoms struggles with any minor change to the plan, gets fixated on things, struggles with anxiety and sleep, finds breaking rules very difficult and often struggles in social situations, but masks well. However, they’re amazing at Lego, can work out complex written instructions, taught themselves balloon modelling, have brilliant creative ideas, has thrived in one to one swimming, managed to move forward in bouldering and (with guidance) has made good friends at school. They love a cuddle, though often do the body lean away and come out with both brilliant philosophical deep thoughts and very kind, loving comments.

There’s a line of thought in the adoption community* when you are at the stage you are being matched and deciding whether you feel you could parent that child which goes a little like, “You can focus in on the issues of the children to the point you no longer see the child” and I think that applies a bit here. It’s the idea that these issues can blinker you to thinking about the other aspects of them as a rounded human child. If your child has autism, they are still your child and every child has different interests, strengths and struggles. If you were to think broadly of only the negative parts that autism can have, you’d never think about the wonderful things that come along with your child too (like those loving comments and sudden deep philosophical thoughts or amazing Lego ability).

And it is disingenuous to try and seperate your statement from Eugenics to Nazi references when that is probably the most prominent example in modern history. Certainly where most peoples minds would go, by way of association, when it is brought up.

‘As I said, though, I don't think "this isn't the child I ordered" is a good enough reason for termination unless there's zero chance of survival past childhood.’
Sounds a lot like disagreeing with a woman’s right to choose to me, @ntmdino .

@HelenTudorFisk

Whoa there - I don't disagree with a woman's right to choose, quite the opposite. I was talking about it from a personal standpoint; that's all. My wording could probably have been better.

Also, I made no reference to Nazi policy at all; eugenics is not exclusive to them in the developed world. The US, UK, France, Sweden...all had official eugenics policies at various points during the 20th century (under most of which I would never have been born), all the way up to the mid-70s in some cases.

In Sweden, for example, it was couched as a choice in a lot of cases - it was a condition for release from mental institutions (among other things).

I believe there was a great deal of opposition to the Spectrum 10K project, which would collect DNA from 10K autistic people for research, because there was a lack of clarity about what exactly would or could be done with the DNA. One of the arguments was that a test could be developed that may 'indicate' autism in a foetus, and the parent could then be offered the option of terminating the pregnancy (similar to the test for Down's syndrome). Irrespective of any argument, when we talk about selective viability, we are talking about eugenics.

There is a strong familial history of neurodiversity in my family, this includes autism of Level 3. This history means that we know how to access early support, and there is a ready made informal network of people who are experts by experience. One or two of my family members made a decision not to have children. But this was a very personal decision, made on the basis of their own support needs and their own preferences.

There is, at present, no genetic test for autism and I hope there never will be.

Medical advances that detect serious issues have made a huge possitive difference to many people. The fact that more will become mainstream is to be expected and celebrated.

I have no idea about any of these new tests and suggest that your friend should get a second medical opinion until she fully understands the benefits (or not) of any tests that are being promoted.

The condition my daughter had will be accompanied with various levels of Autistic Spectrum tendencies and can cause significant distress in many of the children who have are experiencing the more medically complex aspects of brain anatomy that have not been created during conception, the size and shape and ability of brain structures and the endocrine system and how it functions. As in our case and a few others we know of, unless it is severe at birth the challenge was knowing if she was producing enough to not cause problems
But the condition isn’t seen until after the true sight had developed as the first thing we noticed was her lack of vision

Two days later she had dangerously altered chemical processes within her body. She had been compensating and had made strange patterns in the endocrine systems that suddenly became a huge snowball of problems as she began to crash
if the sight situation had not been the obvious sign then she would never have survived
the lag of optic nerves instantly pointing to one condition

The asd diagnosis was also expected

They explained that a child is born with it and many have trouble with gastric problems and sickness and if I had been given the diagnosis that it was there that would have helped Horowitz manage as she was unable to cope with milk

also early help with developmental milestones is hugely beneficial in children with ASD

IIs the person having to have the genetic and heridatary factors done due because certain cultures have a higher risk of developing genetic problems that can lead to serious complications in children.

I had read that Ashkenazi Jews and Jews from that region have some genetic compatibility tests first?
I only heard of this when it was apparent that there was problems in our family
I developed Crohns a while ago, this has developed into more autoimmune conditions, Them my Dads two younger sisters - he was oldest of 9. So my aunts were 5 and 6 years older than me so we’re all close. They both separately 4 years after me, but slightly different presentation were diagnosed as having Crohn’s, the youngest had also been diagnosed with Arthritis and had been diagnosed as primary problem of diabetes,
I have now also started to follow their own disease path.

Due to the complexity of the disease and that we struggle to find treatments. Within 6months we all had separately received letters from a new hospital that had been sent referrals as they were part of most of research
We each had a different doctor, so we all went together for each person

That is when it had been mentioned that the solid link they knew of was from that specific area.

we are waiting for some more tests

But in the past and people who have decent connections are tested before dating

is that what happens happens in this case

No, you’re right, I was being too reductive above about how it could manifest. I think we are clearly on the same page.
I tend not to be as articulate or thought through as I’d like when people draw comparisons between women having a legal medical procedure and Nazi policy.

And I don't mean "classical", do I? My head is struggling to find the right words tonight. It took me a good minute to work out that the word I needed was "influence", at one point. I'd better go and sleep and stop inflicting myself on innocent people 🤨😒

Sorry, I've realised how long that was. My medications make me so bloody wordy 😖 Hope the gist is there, anyway.