AIBU to be frightened of my child having a disability that runs in the family

[daffodilsoverthebridge]

Opinion seems to be divided as to whether or not it is genetic and there's no prenatal screening.

I am now in the awful position where I want a baby but am petrified of passing it down. W

OP I understand your concerns. My DSis has two boys with autism and it's hard. I didn't have a child until I was 42 and the risks were high due to age etc. I remember clinging to the fact that girls were lower risk and so I had a 50/50 chance of a girl. But then when I was 30 weeks someone pointed out that the fact was incorrect so I spent the period up until the birth with it at the back if my mind. As it happens I had a DD and she appears to be perfectly average (not going to say normal as it's a little insulting to my nephews).

My Dsis loves her boys even though it is hard work. The boys absolutely adore my DD and I often leave them 'looking after her' while i have a cuppa with my sister. They are 16 and 15 and are gentle giants with her.

Until my nephew's were born there was no sign of autism in my family. It can happen to anyone so please don't be afraid.

You sound like your familiarity with the disability which is present your family members has negative associations for you.

I can remember going to the park with a friend and her DD before I had children and thinking what a miserable experience it was, all cold and nothing in it for me

Now I have kids, going to the park is fun and I am fascinated to watch my kids play, but that is because I love them. What I'm trying to say is that having a child with a disability is hard work, but there are lots of happy bits too.

MrsD what I meant was that when you've experienced something already, you can sometimes have a fear of it. I shouldn't really have used your situation and am sorry for that.

I know there are a myriad of possible disabilities. It's like (say) if you'd been in a plane crash you'd be scared of it happening again next time you got on a plane even though logically the chances of it happening again would be nil. So although it isn't logical, this disability is the one I am frightened of - does that make a bit more sense?

I can't, because people will just say I can't be a parent then, and I don't think I want that either

My parents just managed to wreck things and they didn't mean to AT all, but they did and I'd hate to do that to a child. If I thought I'd be approved for adoption it might be a possibility but I wouldn't in a month of Sunday's!

I wouldn't have thought adoption is an easy answer either I, m not an adopter but it isn't an easy process by all accounts and children that are adopted may come with a whole host of other issues ,the thing is patenting is hard wether your child has disabilities or not ,I wouldn't have chosen for my child to be severely autistic but he's a very much loved child who brings us a lot of joy as well as worry ,our lives are not unhappy in the main but that's just my experience i do think Mrs Devere is right when she suggests counselling.

I know it isn't x but I wouldn't be actively bringing another life into the world - that child would exist already. But it is not for me.

I haven't - I'm not sure it would help with autism, or would it?

I don't know a huge amount about my family history but there was almost certainly something on my mother's side and to be honest I don't trust my own memories!

I know it's a risk whatever you do, logically I know that, yet also logically I know if I had a baby and what I fear happened, I'd feel AWFUL.

Please understand that's not me saying 'children with autism should not be born' it's just led to so very many problems and they break my heart.

Who will say you can't be a parent, and why would you have to take any notice of them?

My 7 year old ds has AS, he is very high functioning and is doing very well in mainstream education, his teacher calls him a 'high flyer'. He has friends, he is happy, he is well behaved, doesn't meltdown and isn't violent. He will chew your ears off with 'facts' about volcanoes, the weather and astronomy, repeatedly. His memory is phenomenal. To look at him you wouldn't know.

Would I change things if I knew then? No. We went on to have two more children (both NT) his quirks make him the wonderful, bright, loving, child he is.

I won't lie, there have been times when it's been hard, his anxiety, coping with school in the early years, dealing with CAMHS etc.

I agree with Mrs D. Is there someone you can talk too about this?

Can see where you're coming from. I'd be finding out as much as possible about it beforehand if at all possible. Here all the care falls to me so it has massively affected my life.
My ds is a happy little soul, but wouldn't wish his diagnosis on anyone.

As MrsDeVere said, that 1 in 68 includes all the points on the spectrum. I would say that my teenaged DS, who has an ASC, has just as good a chance of leading an independent, fulfilling, happy and successful life as his cousins, who don’t.

But there’s no fixed answer to your question. Sometimes life’s a risk. If you think you might have a raised risk due to other family members having the condition then you might be able to get genetic counselling. A chance to learn more about the real risks for your children and also to explore your feelings and concerns and maybe come to some kind of resolution.

And that's the thing with autism it's such a big spectrum what ever point a person is on the spectrum brings it's own worries but the person you describe with autism who has a sad life is just one person with autism ,people with autism are all different just like any neurotypical person life can be good or bad at times wether you have disabilities or not.

Just to see how stupid it is in black and white :)

Seriously, it's helpful to 'speak' about it. A thread last night worried me all over again.

I can't, because people will just say I can't be a parent then, and I don't think I want that either

Which “people” will say that? They would be mistaken. You wouldn’t be the first prospective parent to have counselling beforehand. Parenthood can bring up all sorts of worries and issues and half-forgotten memories from our own childhoods and talking some of them through beforehand makes them easier to cope with later on. Much easier than if the issues suddenly hit after you’ve been awake for five days with a baby who wont settle!

maybe looking in the testing topic would help.
having a disabled child is not that bad

Arf, yeah. I regretfully hear all that. My heart breaks just reading that post.

very good point Arf i often think other posters who have children with higher functioning autism cant possibly understand the worries of parents with lower and i hate that word functioning autism my son is much like your youngest hes as a happy as larry he has no idea like you said he is autistic he will always need a lot of support to live but he is not at all distressed but as you said your oldest may be higher functioning but that brings its own worries .

I don't think YABU to be frightened of it. I think every parent and soon to be parent is worried that their child will face hardships they would like to prevent. It could be that they won't conceive till they've saved up X amount of money to see a child through uni, it could be that they don't want to have a child till they've met somebody who will be an ideal father to their child, and for some that fear manifests in the unknown and uncontrollables - like wanting to prevent disability because they feel it's a hardship they don't want their own child to face.

But it is unknown and uncontrollable. There's very little you can to do prevent it, other than not get pregnant. And that's frightening.

I have dyslexia and will be tested for suspected Autism in the next few weeks. I am also pregnant, so there is certainly a good chance that my baby could have dyslexia and/or autism.

I wish that there was a test that could be made early when she is born, just so I know what I need to be prepared for, but there isn't. To be honest, I'm slightly more scared that she will be totally NT as I'm not sure how I'll be able to relate to her (not that I'm wishing that she isn't).

Thankfully I have friends who have either dyslexia or autism and they have all turned out fine and well adjusted people. DH is NT, so he will be able to help teach the baby how to relate to other people and read emotions, so I'm really hopeful for the future, whatever happens.

This is unbelievably hard, and such a personal decision - I could never judge anyone in this position.

I don't have any personal experience of autism in the family (although I have several wonderful autistic friends), but I do with inherited genetic illness. My DC and I are at risk of Huntington's disease, which I only discovered when DS2 had just turned 1. Had I known we were at risk, it undoubtedly would've affected my decision to have children, and how I did it - there are pre implantation genetic selection methods available, so any babies are born without the mutant gene. I appreciate this isn't for everyone, but it would've been my choice.

However, had life gone down that path, I wouldn't have the fantastic DC I have now. The choice is yours, and yours alone (I count your DP in that too).