To be convinced I’m going to have a child with autism

[EalingLucy]

Sorry if this offends, i really don’t mean it to.

Im pregnant, at 40. I have adhd and DH has probably adhd / autism. He has a lot of Autism in his family, some quite severe with neices not being able to go to school etc.

we wanted this child but now it’s a possibility I am so scared the child will be profoundly autistic like his family members. I just can’t see how I would cope, and even though it sounds mean, I just don’t want to live like that - they are now adults and unable to live independent lives, it’s hugely worrying and stifling. I don’t think the pandemic helped. All they do is play video games and they have no interest in human interaction at all.

being ND myself I get easily overwhelmed and worried about things and I know I wouldn’t cope well.

on top of this the enormity of motherhood has me very anxious too, what if I miss my life? I like my life! And my alone time - a lot of it.

on the other hand I love children and have felt for a while that I won’t feel fulfilled without one. Like life is sort of pointless even tho I do enjoy mine. Having the closeness of being a mum looks lovely. All these thoughts have disappeared with my anxieties tho and I am just filled with dread and fear.

I am honestly considering a termination because of this anxiety and being convinced I will have an autistic child.

am I being silly?
how do others cope with these worries?
are there any specific kinds of counsellors I should see? It seems generic counsellors can’t help.

im at a loss of what to do.

yabu - you are worrying too much
yanbu - you are right to be worried

I have adhd and DH has probably adhd / autism.

Has your DH not had a diagnosis?

Honestly absolutely nobody can tell you.

However, you are pregnant and I think that’s the big difference - you obviously knew the possibilities and went ahead anyway. Whereas I would (and do) take every step available to make sure I would never fall pregnant again.

Just don’t kid yourself that you can ‘parent it out’. I read what you said about your husband’s nieces. I would bet my house that they parented the way they did out of necessity not because they were lazy or permissive. You need to understand that you can’t ’do better’ or ‘fix’ this like it’s a problem. Thinking like that is setting yourself up for potentially a lot of frustration. You need to accept that you can deal with whatever comes your way - and believe that.

However, marriages break up, careers end, etc over parenting ND children. If they can’t cope or are expelled or suspended etc - are you prepared to be a stay at home carer? These are all genuine possibilities, as you’ll see the various boards and Facebook groups.

I have done better than most in as much as I was able to leave a career job that I loved, but still use my qualification at a flexible and less demanding level so I have continued to work - but I have not been able to fulfil my career potential or even get close to it.

That being said though - ten years ago nobody even really realised the link and that it passes in families - if you didn’t know, would you just be happy that you’re pregnant? Because, if it changes anything at all, a large part of me wishes I had decided to have another baby BEFORE I knew, and I am sure I wouldn’t have regretted it. It’s very different looking in hindsight or weighing things up clinically as you are doing here vs just happily enjoying a pregnancy and not trying to imagine what might be..

Oh wow, this is such an interesting perspective. I have found NT boyfriends both exhausting and boring with their constant need to socialise and talk! So perhaps having a ND child would be better!

This is very very true.

I have to be honest and say it makes me really sad to hear that your main reason for having a child is that you don't want to miss out and you want the closeness of a mother-child relationship.

This seems to me to be the start of being a narcissistic mother, so I think you may need to step back and reevaluate.

The reality is that your child could have any sort of health problem - they could have a genetic disorder, they could be injured during birth or catch an illness/be injured during childhood, all with potential long term consequences.

When we choose to have children, we have to choose to step into the unknown and commit to loving the child and caring for them come what may. If you can't commit to that, then I don't think you should have tried for a baby.

I'm not trying to be unkind here and I am sorry that these thoughts are causing you distress. I hope you can discuss this with your midwife and seek some support.

Yes that’s a very interesting point. It would certainly be easier if I didn’t know about the risks!

yes we have discussed if the child needed full time care, it would likely be my dh as I earn a lot more. Harder if the marriage breaks up tho!

I should chat more with him about this.

his nephew was expelled sadly and has been at home for years now. His sister has had to adapt a lot, it looks very hard.

you said his twenties and thirties were very difficult

is that not two decades?

I think it is incredibly unfair to accuse OP of narcissistic mother syndrome before she has even given birth
It reminds me of those who used to tell unmarried mothers they were selfish unless they gave up babies for adoption.
Everyone wants a close mother or father child relationship and everyone surely has hopes and dreams of parenthood, that isn't narcissistic...it's just broody/biology

My twenties and thirties were difficult too. They are for many people.

Yes exactly. I’m not obliged to provide a full laundry list of reasons to want to be a mother to ensure I’m ticking all boxes for ‘non-narcissist’

This is all a bit ridiculous imho. It's a baby you are having not a Five Year Plan. Let alone a Twenty Year Plan.
Who knows what will happen in even a year? Famine Flood and Pestilence or cuddling on the sofa. Or both, at once

OP your concern is rational and it's normal to worry.
I have an autistic son and two NT kids. I'm NT. My husband is autistic. My husband has a good job and we have a happy marriage and family. My son has just moved to a wonderful specialist school aged 11 as mainstream wasn't working.
But he loves life, loves learning and knows far more than us about some subjects. He's funny and quirky and full of joy. We've had tougher times as he has found regulating his emotions hard but it's got so much easier as he's got older.
I have learned so much about the ND world and I'm still learning. My eldest often gravitates towards ND kids, and me ND adults. I probably always did.
Your worries are valid but just remember that your child won't just be a child, they will be made by you and your husband and you will love them so much.
We all want our children to thrive and not struggle in life. I've fought more for my middle autistic child to remove some struggles for him than the other two but honestly he loves life and experiences as much joy and passion as my other two. And I don't worry more about him than the other two! Worrying is part of being a mum.

How far along are you OP? If you’re still in the first trimester, I think it’d be wise to terminate.

This is a very difficult situation and I do sympathize. It’s likely that your child may have some level of neurodivergence, but it’s not possible to know until after they’re born-possibly till they’re 18 months. They could have a manageable level of adhd or autism which allows them to work, form relationships and lead a good life, or they could be profoundly disabled. In your position I probably wouldn’t have got pregnant as I know I’d struggle in my 40’s to cope with a very disabled child. However, if you terminate you may regret that too. I’d suggest counselling.
Edited to add-my Aunt married and had four kids with a man who had bipolar disorder. 3 out of 4 inherited it and suffer awful mental health which means they can’t work. However, she has no regrets.

I have a profoundly autistic child. Quite alot of the time I wish I didn't, but I don't think I would change it. He's gorgeous and adorable.

It has been a very turbulent time and I've been close to a breakdown quite a lot of the time, but we have both tried to continue full time and this doesn't work well for most families with nd children, let alone when one that is severely disabled. We are only just getting to the point where we are getting our head around his diagnosis and coming to terms with what is in front of us, and getting school/support in place as navigating such a shit system is a battle. It does get easier after this, but I won't lie, it wasn't what I was expecting in life, so it has been hard and exhausting.

I think you are seeing this as a certainty though. Having a child with severe autism is rare. Your child may not be autistic at all. My son is generally cheerful and quite a joy to be around a lot of the time. It isn't all bad. It is all tiring though!

Even NT children can be difficult too. It is always worth remembering that. It is probably easier with an NT child, but not necessarily easy.

My friend has an autistic DD age 6, non verbal. She is a single parent with no help. As in none. Only her childminder where she lives. DD’s father walked away. I am an ex colleague and I do feel for her so have an hours phone call every week to listen to her off load and I give her advice, and i’ve helped her with the ECHP. She does confide in me that it was a big mistake having another child at her age (she was late 30’s and her other DC were older). Her life is really difficult. She is hoping to move, closer to support network but she is NC with most of her family so its mainly friends she would be moving closer to, and back to where she grew up

Probably not what you want to hear but wanted to offer a realistic experience. We can all say it be ok, but we have no idea. There’s a real case your child could be autistic yes, but there’s a big spectrum. Friends DD is on the more severe end, non verbal, not toilet trained at 6.

Thank you, and sorry to hear it’s such a battle getting help. I’m glad you’re enjoying it nonetheless. I think my anxiety is creating this sense of uncertainty. I went on here for comfort and perspective but sadly feel a lot of people have taken offence or enjoy attacking which is quite odd. Appreciate those who can lend honest perspective and informed experiences.

Poor lady.

all experiences welcome. It’s good to know my worries aren’t necessarily all anxiety.

I will add that I am on the waiting list for an ASd assessment. I have struggled in life, but have always been employed, had partners, got a good degree and managed pretty well considering the demands on my life. I have just felt like a perpetual weirdo and struggle with social cues and understanding speech and have probably underachieved.

I have one cousin with a job who has struggled to get a girlfriend, and another that has worked and had a girlfriend, but a few years back struggled a lot to the point people didnt think this was possible. It's different for everyone.

People do take it personally OP, but it's not the child you're worrying about, it is the impact and lack of support you read about everywhere. They shouldn't, it is reasonable to worry.

It’s good that quite a few posts emphasis how severely disabling and devastating for the family autism can be. So much talk of neurodiversity being a “superpower”! I have a friend with a non verbal child who has started saying that her child has ‘the real McCoy” autism. This may be provocative but understandable when people who can manage professional jobs, family commitments etc are now saying they have the same disability (or even saying it’s not a disability). I think the day that medicine/ science can measure the degree of autism can’t come soon enough.

This is a very strange reply

Yes, you are absolutely right. My life is totally different to that of parents whose children are locked away with their autism and and that level of worry and stress and anguish is a world apart from mine.

It is likely your child will be autistic.

I agree. We need more vocabulary to differentiate the levels of autism severity. Getting rid of the term “Asperger’s” feel like a mistake in hindsight.