if your DC has ASD did you go on to have more children?

[23bumblebee]

DC has ASD with PDA and we are currently discussing having a second. Both are unsure and are concerned that another child might also have ASD - due to the genetic links (lots of ASD in my husband's family so definitely genetic), whether we'd have enough energy for both, what will happen to DC in the future. We dont have anyone to ask in RL but if you did have a child with ASD - did you have any of the same questions, how did you make a decision them?

My DS had his diagnosis just before he turned 4, although it was apparent there were ‘issues’ from 2 1/2. There is 21 months between him & our DD so we didn’t have any choice. The spectrum is so huge it is difficult to compare 1 family situation to another. In our case our family dynamics work perfectly- the kids are very close and complement each other. DS is so organised & precise and DD is completely dippy. DS some learning difficulties and attends a special school while DD is a high achiever academically. Our main concern was ensuring DS didn’t lose self esteem being compared to DS which hasn’t happened. As ASD making life harder, especially with 2, with us it hasn’t an issue.

Heart wrenching - heart breaking. I don't know how many times I have sat with ds1 while he has sobbed his heart out because he desperately wants friends but can never make it work. It is so desperately hard to watch someone you love and feel helpless to help them

Are you in any pda fb groups? I find them quite helpful and a good source for a specific discussion/advice about pda which is so different in many ways to other parts of the spectrum.

@BlueHydroponicCarpet - no, not yet. Everything has been a bit overwhelming to be honest. I get why he struggles with friends but nothing seems to help. I have no idea how to make him understand why it doesnt work - I try but it doesnt get through. But kids around him dont want to be bossed around, plus DC is so fragile that anything goes wrong and he is in floods of tears. So he comes across both as a bossy boots and completely fragile. So kids kind of avoid him now, in turn, he seems to gravitate towards the bullies. No idea whether it will get any better as he gets older. I mean even at home, he is totally focused on myself and is really rude to his dad whenever am around. They are totally fine when am out and DH does as much with him as I do.

I guess it would depend on where on the spectrum they fell and how able I thought they would be to live independently as adults. I've known people with children with complex needs who've gone on to have more children with the plan that they could care for the complex child in adulthood when the parents were no longer able to. In some cases second children have been NT and in some equally complex.

I don't think it's an easy decision to make. People who have healthy babies with no disabilities decide whether to have more children or not without having to consider any of these factors. I had genetic testing done to see if we had "caused" my DDs condition, they came back clear but even then my ExH wouldn't "risk" having another child.
So a big ramble there with no real conclusions, it's really difficult

We both thought we'd like 3 kids but stopped at 2 partly because of DC's ND and the challenges it brings. We are already on our knees dealing with it (they've both had other medical problems) and would really struggle to cope with another child that wasn't "easy" / found life easy. I'm sad about it, but my two existing DC need all I have to give.

They can play brilliantly, and DC1 has found a way to play with DC2 and accommodate his quirks, but mostly they fight and trigger each other due to their differing profiles, and it's exhausting.

Oh dear - that sounds so exactly like my ds. I'm guessing yours is much younger and you have a massive start in having the diagnosis young which means you can do the right things and there is more chance of success. My own ds was not diagnosed until age 10 and the first decade of basically being seen as the naughty boy and the problem by almost everyone has been massively damaging for him.

We were offered a referral for genetic testing by the NHS paediatric team that assessed DC1 for autism as they apparently offer it to every child diagnosed. In DC case though we were told it was unlikely they’d find anything definitive (DC doesn’t have any typical comorbidities that might suggest a particular syndrome for example) and we declined.

We were told if at any point, even years later, we decided we did want it we could contact them and ask for a referral - you could try whichever service provided your diagnosis and ask if they offer it.

I’d toyed with having another (DH would have been on board at the drop of a hat) but wasn’t sure. And then DS2’s difficulties became apparent at just before 2yo and that sealed the deal - I decided absolutely not. Ds2 has autism (lower functioning) and other co-morbidities.

Having a third would have had too much impact on both DS1 and DS2, plus the r impact that ds2’s difficulties would have had on the third, plus the extra work and ‘burden’ that another child (neurotypical or neurodiverse) puts on parents. It was just way, way too much to contemplate.

I do see some other families having a third and feel a twinge, but that’s not because I regret the decision I made, more than I’m sad that the decision was made for me.

I'm in exactly the same boat - DC1 has ASD, Im trying to come to terms with it. Currently fighting to get him support & scared of having a second, but also desperately want another. Ultimately we will have another (if fertility allows) as we're already in it, is that makes sense? but it will be tainted with fear that our 2nd might also struggle. It's very hard.

If i took my darling boy out of the equation & someone told me I would have autistic children, I wouldn't have done it.

But he's here now & I love him almost more than I can bear.

I'm pretty sure my DS has PDA and he over reacts a lot to his younger sister. He had had many developmental issues, but I was obsessed and somethings did work themselves out. I do find it hard to be patient with DC1 if DC2 is crying. I did consider whether I could take having another child like DS. It turned out my second was a girl and whilst she's a tricky fish too, at least the obsessions aren't the same.

I absolutely adore my DS but he is easier solo, but having a sister is good for him too. Not good for me 😬

My brother had a child with a genetic illness that caused a mental disability and then had another child who was of high intelligence. It worked out very well.

Our son is on the waiting list for asd assesment. We just dismissed his odd behaviour until his teachers brought it up when he was 9 years old, he's almost 11 now. He has no issues with learning, actually very intelligent (especially with maths).
Our girls don't have any signs of it, one older and 4 younger than him.

I have 3 children. I was pregnant with no3 with no1 started school and then started to have difficulties at school. He is diagnosed with ADHD and has strong ASD traits (including significant sensory issues). I hadn't worried about No2 as he initially seemed easier
and quieter although a little quirky- but school proved hard in many ways - he is autistic (pda). No3 is undiagnosed although probably has something as the genetics are strong. In hindsight logically I would have stopped at 2 - I can handle 2, 3 is too many! However no2&3 have a lovely relationship. No1&2 have shared interests. No1 was thrilled with the arrival of no3. They are a little tribe, we are a neurodivergent family. . We just about cope. I have a hands on partner and a good school. I know if I only had one child it would be easier to meet their needs. In many ways I'm blessed I didn't know what I know now when I got pregnant. It's hard though. I think 2 is manageable with the right support.

We have two children, ds11 (asd, ocd and severe anxiety) and dd8 (asd, learning disabilities, hyper mobility and muscular dystrophy).
Our dd was diagnosed first at 4.5, it was evident very early on. Now ds has always been very advanced, talked so early and always had his quirks. We didn’t suspect anything as he was our firstborn and our norm. It started to become more difficult when he reached 5/6 and we’ve had some very difficult times. When dd was referred to the pathway we began to suspect ds was autistic too (Teachers and paediatricians mentioned autism as he was getting older as well and he was referred for assessment around 6ish, he has only recently received his diagnosis!) we were included in a group of ‘forgotten’ referrals which meant our children had been on the waiting list the longest! So we were outsourced by the nhs to a partner company who went through the assessments so it’s been a long time coming.

Dd has always needed all our attention all of the time. I won’t lie, it has been difficult! Sometimes I’ve felt I can do it no longer. I had gone back to study when dd was little and somehow I managed to complete my degree during our rollercoaster life. I haven’t been able to get a job after graduation though. There are too many to do lists, too many appointments, too many routines to follow. Dh is the breadwinner and I manage everything linked to the kids. Had the journey with dd not been as difficult as it has been, I would honestly have had another 2 already, I always wanted 4 children.

We are currently discussing having another baby. Our main concern in our circumstances is the muscular dystrophy. We have already had and would still need to have a lot of genetic tests to ensure any subsequent baby is healthy.

Dh is very worried about another child with asd, I am less so as I know we can do it. I do totally understand where he is coming from. I really want to try and would love another child. Part of me thinks it would be amazing but then I do think, are we ruining how far we’ve come, is the age gap too big now, we have no family support as it is so is adding another child a good idea and then what if the testing for the new baby comes back with negative results, am I strong enough to go through that? We lost our second baby and it almost killed me. I am struggling with the intense desire for another baby though, it is so difficult when the choice is taken away from you.

I also strongly believe I am on the spectrum myself as well as my mum and my brother. As I’ve been on this journey I resonate so much with everything I have learnt along the way.

It’s so difficult to make the decision on another baby as you can picture it any way you choose but you have no idea which little person you’re going to get and how your current child would respond to them.
My dd was completely unaware of her brother’s existence up to about 3 years old. Ds struggled massively with that. They have a lovely relationship now (biting episodes aside!)

After DC1 was diagnosed with ASD, we went to see a geneticist who told us that the risk of a second child having ASD was around 5-20% (depending on if we had a boy or girl). Those were odds I felt I could live with (although if she had said 25% I think it would have been a different story).

I desperately wanted a second child and felt that, if that child had ASD or not, having a sibling would benefit DC1.

We had DC2, she is neurotypical and gets on really well with DC1, and I really think has helped DC1's social skills.

I have to say I wouldn't have a third if I had two with ASD - the chances of that third having it are significantly higher (they think at least 25%).

I appreciate that some people with ASD might be offended that people might choose not to have more DC based on the risk of them having ASD. Whilst I acknowledge that ASD can in some cases just be a "difference" and in some cases can even be a gift, at the far end of the spectrum autism is, I believe, one of the most difficult disabilities there is (both for the individual and those caring for them). And I do think it's right that people consider the risk of bringing children into the world who could be so affected.

I had a terrible birth with DS1 and couldn’t have any more. He was diagnosed with ASD and PDA when he was 8. I doubt he would cope with siblings and it’s easier for us to manage just him. We can also afford a lot of therapy and private schooling etc which is better for him. But I think having siblings is a good thing generally.

My eldest wasn't diagnosed until 12 and I had a 3rd child by then, he's recently been diagnosed ASD too. They're both also moderately deaf. My middle son isn't. I suspect their father might be too but never been formally diagnosed.

My parents made the decision to have another child (me) when they already had my autistic sibling. They always said they had me so I could look after my sibling when they got too old to do so. It was a very unkind thing to put on someone, and I'd hope that those considering having a baby would never do this.

My son was still non verbal and non sleeping at 4 so I promptly had myself sterilised

Partly because I didn’t think I would be a le to deal with a subsequent child with the same issues but mainly because he would have really struggled so much if I had a third. He needed me far too much at that age. I am still glad I did that although he seems to have grown out of many aspects of ASD!

I am still glad I did that although he seems to have grown out of many aspects of ASD!

Autism isn't something you outgrow. Your DS may be coping better in certain situations, probably because of changes you have put into place to help him, but he absolutely hasn't outgrown anything.

Dd2 wasn't diagnosed until 16, didnt suspect sen. I have 2 younger dc. Youngest has asd. I wasnt having anymore anyway.

Personally I’d concentrate on the child you have.

@claymodels

I am still glad I did that although he seems to have grown out of many aspects of ASD!

Autism isn't something you outgrow. Your DS may be coping better in certain situations, probably because of changes you have put into place to help him, but he absolutely hasn't outgrown anything.

This!

Lots of food for thought. I guess DH and I will need to sit down and really talk through things. I guess my concern is both DC are how they will manage but also the prospect of having another child with ASD with even more complex needs that we currently have to manage. The uncertainty is a scary thing. No idea how we make a decision as to whether or not we take the plunge. I can also sympathise with everyone else who said they watched their child like a hawk to see for any signs of ASD. The stress of it all does often feel quite overwhelming

I only have one. I'm still glad I didn't have any more 15 years later tbh and more importantly so is he.

No I didn't (although largely due to external circumstances rather than DS's ASD.) I am very torn about the decision. I feel incredible guilt about not giving DS a sibling. We don't have a large family and I really worry about the possibility of him feeling lonely and isolated in later life.

That said - it's a lottery. I know several families with multiple ASD kids. Some are happy, some are barely clinging on. There's no crystal ball or perfect decisions, OP. It's a leap of faith....