Huge, overwhelming fear of having disabled child

[l3m0n]

Good afternoon Mumsnet

I'm very new here, so I hope I've done the right things with the thread/topic.
I have been on and off trying for our first baby for a few years now, but having had a big career overhaul in the last year I've put off anything happening for the past 12 months, and went back on the pill, but now I'm settled I'd like to try again.

For clarity, I have ADHD and my DH has undiagnosed AuDHD (he exhibits aspects of both, but I'd argue he's heavily skewed ADHD more than Autism) - I am medicated and happy that way, DH is coping with his symptoms so isn't necessarily in a rush for a diagnosis, whereas I was struggling after an incorrect bipolar diagnosis and awful treatment for the past 8 years.

I'm 32 and DH is 29. I don't want to wait too long to have a baby and would ideally like to be a mother by the time I'm 34.

However, getting to the point of it, I am deathly scared of having a child with severe needs, in particular Autism. I know it's an unreasonable fear, but please hear me out.

My best friend has a four year old child who has severe Autism. Her husband is incredibly unhelpful and often wishes that the child would 'get better', has said he would have to put the child up for adoption if my friend left/died etc. He is absent and obsessed with his video games, spends no time with their two children (they have an older child, 10, who has mild ND symptoms).
Now, my DH is far more supportive overall than my friend's husband is. I'm well aware that my friend's marriage isn't just affected by their child, but the child is definitely going to be the end of it.

However I've seen how hard it is for her, she had to give up her career to care for her child. They are completely non-verbal and highly unlikely to ever speak. I've seen her at her most downtrodden, from her husband's awful behaviour and the difficulties their child presents.

I love the child to bits, I would consider myself an aunt, I've been close to them since she was pregnant. The child trusts me and I help out, I understand their routines but sometimes when I'm with them I think 'I could never ever do this, not in a milllion years'. Because they're the only child I have in my life, though, their condition feels like its more common than it probably is, they're the only child in their nursery class like this, but they're all I ever see, and of course my friend hangs out more with other ND child parents. Perhaps this inflates my perception of it?

I grew up chasing my career, I finally have my dream job. It's taken me years of struggle, trauma from a previous DV relationship, mental health maltreatment by the NHS and I'm finally at the point where my life is stable, happy, calm, peaceful. I feel ready for a baby, but I am so so scared of ending up like my friend. I see her struggles, I've felt her pain, I've seen the torture she goes through. I know she loves her DC so so much, but I know she feels frustration and sadness, like any ND parent would.

I don't think I'm strong enough for it - I know though I could deal with an ADHD child because of both me and my husband being ADHD heavy, I recognise it now and I know I will bring up an ADHD child with awareness and give them the help I never had - I was only diagnosed this year as an adult.
Having a child like my friends' though, with the potential of either of us having to give up our hard-earned careers, the high divorce rate, the heavier commitment with severely disabled children, terrifies me beyond reason.

I don't know if I'm just being scared of something that's got such a slim chance - my ADHD doctor made me very aware that my chances of a child with ADHD are much higher, especially with DH.

I also know that I don't have anything against ASD - when you're ND you tend to flock to similar people, so so many people in my life, including DH, my brother, my best and closest friends have Autism or Autistic traits. I work in a field with a LOT of ND people. Whilst ADHD and Autism have a lot of crossover though, they are still very different, I can get frustrated with Autistic behaviours in some people, which is an initial reaction due to my ADHD and not my true feelings - its just a reaction my brain does initially because it doesn't add up to me and can frustrate me, before I critically think. I find this only with adults though.

It's more the aspect of the child being more than mildly disabled, any disability, that scares me, I really don't think I could cope. I don't know how people do.

And that leads to so much guilt, because I am torn - should I even want to be a mother if I am scared of the prospect of disability? Surely I should just be grateful no matter what? And am I being ethically right by having a maternal child when I KNOW I will have someone with a high chance of ADHD, is it fair to them that I know it will happen? Knowing how they will struggle? Should I adopt and break the cycle?

So sorry for the big rant. I know that this paints me as a horrible person, I'm prepared for the hate. I just can't get it out of my head. I know not every child is perfectly healthy in and out, that's fine. It's more the idea of having a child that will need much more severe needs for the rest of my, and their, life.

I have anxiety, as well, if it wasn't super obvious, and this kind of panic can eat someone alive. It makes someone unreasonable.

I really ask, if possible, to have any empathetic responses, but please also be honest.

Thank you for reading <3

[kallenop]

I have an autistic son. He's an adult now, and not considered as severe as your friend's son, but he did require extensive support including a special needs residential school. It's definitely stressful and I had to give up work to be his carer. We have missed out in many experiences that most parents enjoy about raising children, and had to deal with far more demands and administrative burden with the SEND system.

If you and your DH are neurodiverse there is a much higher probability of any child being neurodiverse. It's not something that can be tested for before birth, and really the only way to guarantee not having a disabled child is to get sterilised and ensure that you never have children at all. My son was only diagnosed at age 10, and some dc are only diagnosed in their teens and adulthood, so you will never really be sure that autistic traits might emerge later. And there are of course many other disabilities that might happen following an illness or accident, following the birth of a perfectly healthy child. It is just one of the unavoidable realities of being a parent that you have to be prepared to deal with whatever needs your child will have, no matter how severe they might be.

[itsmyp4rty]

The problem is OP no one can say, but having two ND parents is going to make the chance of having an ND child much higher. Mine was also diagnosed at 10 with ASD and is doing brilliantly academically - but I'll still always worry about him a lot more than if he was NT as his difficulty with social skills impacts everything. I have a lot of diagnosed (and I suspect undiagnosed) family that are ND.

I don't think you're horrible at all and i think it's important to really think these things through. There's no underestimating how hard it can be to cope with the needs of a severely disabled child.

ADHD is highly inheritable especially from the mother - I think something like 50% chance. You've talked about severe ASD but what about ADHD? Would you be ok if your child had ADHD? I think that is the highest risk here and probably the thing you should be concentrating on.

For me I would say if you're ok with the child having ADHD then you should go for it - there are always risks with any child. If you don't think you could cope with a child with ADHD though then I would not take the risk.

[Freshair1]

I wouldn't have a baby then. Sorted. Blunt but you're already an absolutely bundle of nerves and anxiety from what I've read that pregnancy and post birth could be challenging. Don't for a minute contemplate having a child unless you can cope.

[elliejjtiny]

I'm sorry but between you and your dh the chances of you having a non disabled child is really slim. Both me and dh are ND and we have 5 dc who are also ND.

[Comedycook]

After reading your post, if I was you I would not have a baby. Saying with kindness by the way

[stargirl1701]

How about conceiving with donated eggs and sperm?

[PickAChew]

It's fine to be honest about your concerns as neurodevelopmental conditions are so often hereditary. I'm from a ND family and we have 2 DS who are ND and both have been incredibly challenging at times. DS1 is a lot calmer, now, as an adult, but still needs a lot of support with some very basic things. He may or may not grow to enjoy a little independence. DS2 will never be independent in any way, though.

[MadCatten]

This is why we didn't have kids. I have autism, DH has ADHD and dyspraxia.

We wouldn't cope and we know it.

[MoonLion]

If you are this worried and really feel that you couldn't cope then I think it may be better for you not to have a child.

[Daleksatemyshed]

I think you're very wise Op to have really thought about your capacity to parent a ND child. There's no shame in knowing your own limitations and if you really feel you couldn't cope then it's far better for you not to have a DC, when you and your DH are ND your child has a much bigger chance of inheriting ADHD or Autism.

[Waffle78]

If that's how you feel don't have your own biological child. Maybe as someone suggested above have a child through IVF with donated eggs and sperm.

But I just want to say as a mum of two ND young adults ( severe autism and ADHD) The thought never entered my head when I was expecting my son. I'm sure I have ADD myself. But even so if I could see into the future of how my children would be. There's no way I would have not had them.

You could also have a perfectly healthy child but they suffer an illness like meningitis causing brain damage. I know a child this happened to as well as a woman. Or they could be involved in an accident. But if you're really that concerned don't have a child.

[QueenofTerrasen]

I agree I wouldn't have a baby if you feel this way. There just isn't a guarantee.

[Jellycats4life]

I agree that you are basically guaranteed to have a neurodivergent child. No one can reassure you whether they will have high support needs or not.

It’s a huge dilemma I know. I had no clue that myself and my husband were ND until our kids were diagnosed. I’m glad we didn’t know then what we do now, because we would have had to think seriously about bringing children into the world who were going to struggle.

[RhosynBach]

Your DH may not have autism or adhd - being undiagnosed AuDHD doesn’t mean someone definitely has it. Obviously if he is ND and so are you then are chances of having a ND child have increased. Maybe you should look into assessment for your DH first.

[Singleandproud]

It is a sensible thing to be concerned out particularly with yours and DHs ND however even if a child was born healthy they could become disabled through illness or injury (as could you or DH). Many people feel they would be unable to cope but they muddle through in the end.

DD is very low needs autistic, in fact most people don't know and she doesn't have meltdowns etc (she internalise and has shut downs) but even so everything requires planning to the nth degree, I changed careers so I could work fully flexi as sometimes she has panic attacks in the morning and starts school a little later which my previous job couldnt fit around. The patience levels I have to use are something else and just as she masks at school I put on a front of zen-like patience and calmness at home.

You don't have to have a biological child, other IVF options are available or getting a dog etc which is absolutely not the same but may help channel that energy, love and fulfill that need to care for something.

[NeverMrsAgain]

@Comedycook

After reading your post, if I was you I would not have a baby. Saying with kindness by the way

This.

[TheIsleOfTheLost]

I didn't know i was neurodivergent before having kids. Didn't know dp was either.
My kids are at the lower support needs end and it has still been bloody tough. One is partially diagnosed and the other on a waiting list, but it is very obvious. The constant battle to get them to school, them masking there so the teach don't believe me, difficulty getting holiday care they can cope with etc.

I love them as they are and have no wish to change them. I just wish I could change society to meet their needs and afford specialists private school, or to give up work and hone school. Neither is remotely possible. It is so exhausting and emotional. I am surenit is much much harder for parents whose kids have higher support needs.

[LoveSandbanks]

We have three boys - 2 with audhd. I actually applaud your attitude. I adore my boys and wouldn't be without them but I'd be lying if I said it hadn't been hard. Every single system in this country (and many others) is stacked against them. I've had to fight tooth and nail for an appropriate education for them both. I'm now fighting for my young adult ds to have appropriate support as an adult. Its not them that's the problem its everyone else but the problems are huge.
As someone else said the chance of a neurotypical child are slim and our own issues (I'm almost certainly undiagnosed audhd myself) make coping with the challenges even harder.