Scared to have children in case they have additional needs

[Avelin]

A cousin of mine has two extremely autistic children. I love her kids deeply but I would be absolutely devastated if I had to live her life. One of her kids is non verbal and they are both very physical and can cause harm (intentionally and unintentionally. My sister and I try to give this cousin a break whenever possible (maybe once a month?) but we are so exhausted after even one evening.

I know the risk of having a child with additional needs is low but I’m absolutely terrified this could end up being my life. I love children, I love seeing how they interpret the world. I love doing arts and crafts/baking with my nieces and nephews. And many people think I’d make a good mum. But I’m just so scared of the possibility that any future children would have problems. Even though im very healthy and so is dh.

Is this normal? I’m 31 and dh is 35. 2026 was supposed to be the year we started trying for a baby. But I’m extremely anxious.

It’s sad there have just been so many people dealt lousy cards e.g. Jesy from Little Mix and her twin daughters.

I know some will say “well it sounds like you’re too selfish and immature to have a child”. I don’t believe that to be the case. I’m just aware of my limits and having a life that is not extremely hard is a priority for me.

I have a sister with a spontaneous chromosome anomaly that has affected many aspects of her life and my mother’s life. Being a bystander to the struggles of parenting a complex-needs child gives you a very different perspective to being the parent. I can totally understand how OP feels how she does. I felt similarly, both in how much I loved children and wanted to have them and in being worried about having a child who could have additional needs. I had all the tests I could during pregnancy and just tried to push the worries out of my mind. I also tried to have the mindset of others who hadn’t seen as much as I had, and just believe that of course everything would be okay. OP, I definitely don’t think this means you shouldn’t have kids. I know you feel scared but don’t let that stop you and risks are higher the longer you wait.

I'm autistic too and totally agree with you. I'm not sterilised but I wouldn't want a any child to experience what I have.

As mother to a disabled child, I don’t think people with disabled children are strong, brave and admirable. Most people with disabled children just get on with the cards they are dealt with.

I don’t think the OP is insensitive, but it shows a certain immaturity - only wanting children if she can guarantee that they’re healthy.

There are no guarantees,

OP. It’s exhausting. There is never an escape, really. But I am having a bad day.

OP knows that there are no guarantees. Hence her thread. And I think that carefully considering what she can deal with shows a great deal of maturity.

You roll the dice every time. It's why I won't have a third child especially due to my age. However at your age the odds are heavily in your favour that your child will not have significant additional needs. There is a lot of autism and ADHD in my family; some relatives will never be able to live independently. I was very lucky: one of mine is autistic but will be able to live life independently and is doing very well at school, is tricky to manage at home but isn't violent, the other is neurotypical as far as we can tell at the moment. I wouldn't be without them and I wouldn't change them.

You should have children because you want children. Regardless of who they turn out to be.

You cannot have children with the expectation that they will be anything at all. They will be their own people, additional needs or not.

Even if they are born healthy it doesn't mean they'll stay healthy. So I think it's best you don't have them.

Can only speak for myself but I'm not offended at all when people are honest about their limitations.

I wish everyone put thought into whether they would be a good parent and made decisions based on that rather than them wanting a child and not taking time to consider whether they can be the parent a child needs in every circumstance.

I think it’s mature thing to do to consider this. And it’s only natural that you take in your life experience which includes your cousin’s life.

i had more experience of some friends I know having a close call with birth trauma (in one case very tragic) and I was mostly terrified of the birth trauma resulting in profound disability to a child, but I thought about autism, trisomy (done full NIPT panel both times privately and researched the heck out of reliability of results). And I also thought about the risks of things happening later in life as nothing is guaranteed.
the risks are small but not non existent.

in the end I felt stronger desire to have my own biological children that outweighed my fears.

Being a parent is letting a lot of control go over many things. But it’s very normal and natural to think about various scenarios.

Its like another thread that was posted today saying that autism is a spectrum condition. So just because you've experienced autism from one kid doesn't mean that they're all like that. I'm autistic and yet can live a fairly indepedent life albeit with some problems I've learnt to live with. I wouldn't choose not to have kids based on the reason only that they might be born with special needs. If everyone did that, there will be far less people in the world.

I’m a mum to 3 children, one has autism and learning disabilities.
You’re right , it’s hard and I think you’re being realistic .
I am tired all the time , I have no hobbies , I don’t really have a social life and I don’t have money .

Just fyi, parents of disabled or neurodivergent children aren't built better, stronger or more compassionate than those who don't have children or have children without additional needs. We become those things as a result of the hand we have been dealt and we step up because we would do anything for our children.

@Avelin I've sent you a PM, but to save you some time the message is basically don't worry, and don't pay too much attention to what others have to say about your concerns.

I actually didn’t have any of the screening tests in pregnancy because I knew I would not go through with an abortion. When I decided to have a child it was with the mindset that it is a leap into the unknown and I will take whatever life throws at me. Most times that humans think they are in control it’s an illusion. You play the cards you are dealt

It is unusual to be this anxious about an additional needs child. It’s probably not right to ttc at the moment, but work through the realities and if you could face it.

You shouldn’t have children , even if you give birth to perfectly healthy children all manner of things can mean you end up as carer to an older child / adult child .

@Avelin totally agree with you, my friends daughter is non verbal, level 3 autistic and has golbal development delay. She is essentially a carer for the rest of her life.

Yes she loves her daughter of course but it hard and I know she has dark days and it has caused the break down of her marriage so now manages alone (she is utterly amazing)

We are child free not by choice but multiple reasons meant it was never going to be easy for us, I sometimes wish we had a child but I would rather be child free than be in my friends situation. No doubt I will be pulled apart for saying that but no would choose that life or wish for their child.

You're not unreasonable for thinking this regarding your personal situation.

It is unreasonable to post this thread here where so many parents with disabled children are present.

My dd has autism, adhd and a collection of auto immune disorders.

nd runs in my husbands family. Various cousins etc are diagnosed.

my dd has said she will never have biological children because she doesn’t want them to have her shit genes.

And I DID have the screening tests so that if it did show anything I could be mentally prepared for a child with a disability. Not having the tests doesn’t make you better than anyone who did, did you want a gold star?⭐️

I admire you for your honesty, but not many children have difficulties as severe as your cousin's children. Yes, having a baby is a risk - but so is crossing the road etc. It's life. You could have genetic testing to quantify the risk, but I suspect that even if it told your your risk was, say, one in five thousand, you would catastrophise that you would be that one.

When I was pregnant of course I worried a bit about whether everything would be OK, but only a bit. Your worries seem so much more overwhelming that perhaps you are right not to have children, though I would never have made that choice,

But does your DH feel the same? If he got married to you in the expectation that you would at least try to have children together, he might well be very upset if you have changed your mind. It changes the expected course of his life too.

This is why we have stopped at two kids. If we had a third with additional needs it would be too much of a stretch for us to be the quality of parent we would want to be and would negatively impact the children we already have. The risk increases as you get older which was another big consideration for us.

I’d say don’t have children then, it’s probably for the best. Of all the problems a child can go through (severe physical disabilities, cancer, learning difficulties such as Down’s syndrome etc), autism is probably the least concern for me. Also, when you lose babies through miscarriage, you actually just don’t care that your child has autism because at least they’re alive.

I mean it in the kindest way, I’m not being flippant. Autism is a massive spectrum, many children have it and totally thrive, it isn’t the end of the world. If this is something you seriously can’t see yourself dealing with, you’re probably best remaining childless.

Sounds like a bit of anxiety/OCD possibly. You could speak to a genetic counsellor about it if you are worried, or to a therapist if you feel it is more of an anxiety issue. I would *not jump to the conclusion of never having children if you want them.