Autism and family history test before birth

[wherearemywellingtons]

Hello! Looking for reassurance/advice.

I’m British but living and working abroad and my friend (native to the country I’m working in) is having a baby. She’s very stressed because she has been advised to have a (pre birth) autism test and a (pre birth) DNA/family history test for diagnosing hereditary diseases. I’m very skeptical because she knows her family and isn’t adopted and they have no known hereditary illnesses - she knows her parents, cousins, aunties, grandparents etc and they have no hereditary illnesses so I am worried that the doctor is exploiting her anxieties and making her pay for an unnecessary test (where we live, all health care is paid for so of course these tests will be paid for by her). I’m also very skeptical, having an autistic brother, that there is a pre-birth autism test that can be conducted and even if it could - why? She doesn’t necessarily feel it’s necessary but is worried having being told by the doctor that she should have this.

I am writing this thread to show her the answers and ease her anxiety about not needing them/maybe finding a different doctor as I’m concerned about the morals of this one, so please be kind and informative.

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.

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).

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.

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!)

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.

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.

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.

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? 🙄

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 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.

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.

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.

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.

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.

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 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.

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