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?

@TheViewFromTheCheapSeats yes, I am definitely in the cracking stage so feeling totally overwhelmed with the thoughts that our family could get any harder. DC is sociable so am not stuck at home. But the walking on eggs shells around possible trigger points, meltdowns and no at everything is so hard

The other thing people often overlook when talking about their own DC with autism is that very often they are still young DC. They haven't had to navigate the teenage years or faced their adulthood yet - both of which will being new challenges and difficulties. So the 'my DC has settled' is potentially only temporary. The teenage years can be horrific, but equally they can be easy. You just don't know, but whatever any child is there is no guarantee they will always be that.

Yes, I can imagine that it can get even harder once their are older. I am really concerned about secondary schools and bullying. DC has AD with PDA - so wants to socialise but is really terrible at it so is already having issues with other kids.

Have you considered starting the process for an EHCP? You can apply yourself, you don't need to wait for school, and all you need to show for an assessment is that he may have a support need (which he does by default as he has a diagnosis). Even if he isn't awarded an EHCP at the end of the process you can still use the reports generated by the needs assessment to show school what SEN support he needs, social skills support would be part of this too.

Yes I did. But I didnt have the facts before dc4 was born. Ds3 had delays which was a major concern but I was poo pood repeatedly over my concerns. So I had ds3. He was also delayed but I wasnt majorly concerned at 1 as he was still young so we tried for dc4. At 35 weeks with dc4 we had genetic results and DC 2&3 have a genetic issue. A bit too late for any use to me at that point.

Ds2 was diagnosed around dc4 birth and ASD diagnosis of dc3 when dc4 was one.

So I didnt know they would be diagnosed when I had them if you can follow me 😉

Would hindsight change anything? Only if I knew dh carried this duplication before we had any kids..I would have had IVF Pgd. But they asd might still have happened. Just not this severe.

B

Brutally honest and negative post, but it is what it is.
Dc1 fine, Dc2 asd. Was terrified to have third although so broody and felt like I missed out on dc2 childhood-It was overshadowed by stress and worry. Along came dc3 unplanned. I observe constantly and am filled with fear that I may see signs of asd. It saddens me and I feel I can’t bond completely with her. I don’t know why. I just know I’ll be absolutely devastated which is not politically correct but there you go.

@0nlyMe I can totally relate. I was watching dc4 like a hawk until they had the genetic tests. But she does have ASD. She is right on the cut off so that's one blessing.

The grief of what you missed in their younger years is something I struggle with massively. I have four kids. I didnt experience that joyful time x 4. I was scared alone and stressed. And worse of all, not belived so fighting for help

Already had dc2
But wouldn't have had dc2 no. Under 4 dc1 was very difficult and bright. On target and ahead on speech etc.
However even age 1 dc hadnt settled at nursery so we took them out.
They were difficult at groups and shops etc.
Dc1 was already at school and dc2 was 1yo when it was clear dc1 wasnt going to calm down at school.
So now for eg getting to school. Neither dress themselves although they can, if i dont do stuff it doesnt get done.
We are still getting issues with dc1 at school y5 and now friendship issues are worse.
Starting to refuse to go to brownies. Hates pe.
And the 2 kids fight all the time.
Dc2 im not sure seems better at masking at school. But at 6 still loads crying (every single day) and is unbelievably stubborn.
Dc1 is pda and wont do anything. At least dc2 will do most except reading.
During lockdown it took all day to get dc1 to do the maths.
Plus dc2 didnt sleep till 3.5yo. And only really now at 6 doing 9h.

I think HV listening to concerns younger would make a lot of difference. Plus the neurodiverse kids already stood out in reception but none have been diagnosed at our school. And yes im sure some wouldn't have chosen to have as many kids.

Yes, but because at the time I’d not cottoned on that DC1 had autism. As it turns out DC2 is neurotypical, but I’m glad we didn’t know about DC1 then because I probably wouldn’t have dared have DC2. The two of them are very close, good for each other and I don’t regret DC2 for a second - but a second child with autism would have been difficult for me to cope with, and more importantly I don’t think DC1 would cope with another child like them. Many of their behaviours are things they find intolerable in others.

It all worked out for the best, but it’s a big factor in not having a DC3.

I guess we were quite early with the diagnosis. But it doesn't take away from the worry. I don't know DC would cope with another child and their demands or the noise. Or how I would manage if both had PDA. D
For you, do your kids play together?Do they understand each other's demands and needs? How do you cope?

It depends on the kid TBH. We have an autistic DS1 and a probably-neurotypical DS2. We’re preparing for fertility treatment to try to have a DC3.

My DS1 is probably gifted and, as his after-school carer says, he’s not disabled as much as he has an atypical learning style and needs extra support to find his place in the world. I didn’t realise he had ASD until he started having problems in group settings. Under those circumstances, there’s no reason I’d not want a DS3 (shrug).

Yes I imagine lots of people had more before their kids were diagnosed or they even knew, I had two born a year apart so I didn’t know, I had 3 kids before she was diagnosed and yes it’s much harder as I imagine I could have put all my effort into her if I only had one, I am a lone parent and I struggle to take them out as I can’t manage them on my own and it’s a struggle having to look after everyone else including my daughter who needs 1:1 support, considering my daughters needs she ideally needs 1:1 and I can’t do that, being the oldest as well also makes it more difficult than if she was the youngest.

My eldest of three has ASD although he was diagnosed shortly after my third was born.
Yes, it’s challenging and affects the whole family but I like to think my younger two are more accepting of differences and better able to deal with conflict than they would be if they only had NT siblings. For my son with ASD, someone told us when he was diagnosed that having siblings was really positive for him and that has stuck with me. Yes, it’s challenging, there is shouting and aggression and there are times when I wish his siblings didn’t have to put up with that and I worry about the impact on them, but you deal with what’s in front of you and they love each other to bits and are so close in the good times

My DS2 has autism, I was newly pregnant (unplanned) when he was diagnosed. We were told that any further siblings would have a 1:4 chance of having ASD if they were a boy and iirc 1:10 if they were a girl.

At my 20 week scan we found out baby was a boy. I winced as all I thought was the odds are against us, but the sonographer thought I was unhappy because of the sex and told me off.

DS3 does not have ASD.

Yes, but because at the time I’d not cottoned on that DC1 had autism. As it turns out DC2 is neurotypical, but I’m glad we didn’t know about DC1 then because I probably wouldn’t have dared have DC2. The two of them are very close, good for each other and I don’t regret DC2 for a second - but a second child with autism would have been difficult for me to cope with, and more importantly I don’t think DC1 would cope with another child like them.

Same with us. DC2 was over 1 before we knew DC1 showed signs of autism. He was an easy, happy child but he was saying few words. It took two years to get a formal diagnosis and by that timehe was 5 and his brother almost 3. They’re 4 and 6 and they play together all the time. They wrestle and my oldest will kiss his brother’s hair or forehead. They don’t know anything else or different. Our oldest is in his first year of a specialist school and he is thriving so we’re doing the wait and see approach with him to see if a third is possible. There were no genetic factors found when they did test us and our son. His siblings don’t have ASD and my sister and I don’t nor do our parents. The only difference they found that they felt was a contributing factor was the birth. I was induced despite no evidence or medical reason for doing so with him leading to an emcs and him blue and not breathing (no idea for how long) whereas my second came into the world of his own accord (me making sure I didn’t go through the same issue again) healthy and no complications.

We have talked about a third but we are doing the wait and see approach to see how our oldest is after his first year at his new school and how our youngest handles his first year of reception next year in case something does come up.

I knew that dc1 wasn’t developing typically by the time I was ttc dc2. I had concerns about dc1 by the time she was 7 months old (such was the severity of her behaviour and deviation from ‘typical’ development). Dc1 was diagnosed when dc2 was 6 weeks old, having been in the system for about 15 months by that time.

Dc1 and dc2 totally played together when they were small. They did (and do) understand each other’s needs - which isn’t to say that the toddler years weren’t fraught and very difficult at times!

By the time dc3 came along, dc1 had an EHCP, and had been in a fabulous SN school for 4 years. Dc2 was getting along ok in mainstream.

Both dc1 and dc2 played with dc3 nicely enough. Dc2 and dc3 are very close now - they are very similar in ASD profile, and in personality (which leads to clashes too). Dc1 is now in 6th form at the same fabulous SN school, and has come so far from the, frankly, isolated, withdrawn and difficult to engage toddler she was.

We have been incredibly fortunate (despite the extreme difficulties), and really are now in a good place. I am now a single mum, and to be blunt, a lot of the calm now is becaus exH is not here anymore. We manage days out, with a reasonable spread of things to enjoy - the hardest part there is finding something that a 15 year old and a preteen want to do, as well as being suitable for dc1 with learning difficulties, but we manage, just about. There is an enormous amount of planning, and an acceptance that our ‘normal’ and way of enjoying things is not necessarily the same as a lot of other families’, but it honestly is ok for us.

I am facing dc1’s transition to adult services with a large amount of trepidation, and of course I fear what the future holds. But there have been some very good times along the way, interspersed with the difficult bits (and a lot of the difficult bits have come from having to deal with admin and battling with local authorities etc, which really should not happen the way it does).

I hadnt realised that you could do genetic testing. How did you guys go about it?

It is such a large spectrum, DS2 was my youngest and we did want one more but it was clear life was going to be difficult. In all honesty my older children lives have been scared and I feel guilty for that. holidays, meals family occasions only happen if one of us stays home. Even watching a movie at home is impossible. Equally my brother who was diagnosed as an adult improved every aspect of my life as a child and an adult.

My kids often feel resentful towards dd because there’s a lot of places we can’t go to because of her or she regularly has melt downs or we have to leave places, they often say they wish she didn’t have autism etc which makes me feel bad/guilty. It definitely impacts my other children.

I hadnt realised that you could do genetic testing. How did you guys go about it?

It was part of the assessment for autism when we did it.

@BlueHydroponicCarpet do you think a diagnosis of PDA makes it harder for them to manage siblings? It's so hard - DC is very sociable but most of the time it ends badly so on the one hand, they would love a sibling but on the other hand, will I just end up having to rescue one while trying to calm the other

DC2 has ASD although she wasn't diagnosed until she was 9.We had our son 3 years later but I'm beginning to suspect he may have some form of autism.
DD2 has mild ASD and will likely be able to live independently etc but as our son is so young I've no idea how he'll cope.
I don't regret any of my children though and I'd make the same choices again.

My ds1 is sociable and wants to have friends but also wants to control everything (pda). He is very focussed on his specific interests, tends to want to play with just one person at a time and isolates them in order to achieve this and loses it as soon as the person he is playing with is no longer happy or willing to do everything ds1 wants.

When his siblings were younger they really idolised him and wanted to play with him but couldn't understand if they were not the person chosen for his 1:1 playing, and generally any game which he organised which involved all of them would go fine for up to 10mins after which there would be tears and massive upset as 1 or more of them failed to follow his rules or didn't understand how to follow his rules.

He has retreated to mainly playing on his computer as he is now a teen - where he used to get the younger ones to play on the computer with him but again would always need to be in charge and as they have got older they have got less and less willing to be dictated to.

It does depend on your own dcs particular presentation and needs, but I understand from various groups I'm in that my dcs experiences are not at all uncommon with pda.

There is also the added complication that parenting a pda child differs massively from ordinary parenting and a NT or even a non-PDA ND child will not flourish if parented in that way so there is a huge struggle for the others to understand why ds1 is treated differently. It has lead them to having a more sophisticated understanding of difference and people getting what they need rather than all getting the same, but I'm not completely convinced that this is a totally positive thing for rather young children to have to come to terms with.

@BlueHydroponicCarpet thats exactly how DC is which is heart wrenching. DC wants friends but I can see why other kids find it so difficult. The older they are, the worse it is getting. I almost feel that if DC presented in a more typically autistic way i.e. not as interested in say play with other kids, then we wouldnt even be thinking about another child. As it is - I know DC would love to have a playmate but I just dont know how that would work or whether I have enough in me.