Advice from parents with an autistic child- should we have a second child?

[SherbertLemons]

Hi all,

I’m looking for some honest advice from other parents who have a child with ASD.

We have a beautiful daughter who is 3. She is suspected to be autistic – she has a speech delay and is a bit behind her peers developmentally, but she’s bright, aware of the world around her and progressing at her own pace. She currently sees a speech and language therapist and we’re doing all we can to support her. We are considering a private assessment before she starts school as the NHS wait list in our area is still over 2 years.

I’m turning 42 this year and my partner and I are trying to decide whether or not to have a second (and final) child. Because of my age, it really feels like a now-or-never decision.

ASD runs in my partners family but not mine (as far as I’m aware).

We have no family support whatsoever, and one of our biggest concerns is whether we could cope emotionally and practically if our second child is also had autism (perhaps of greater severity than our daughter) or had more complex needs, either physical or mental. We worry about how this might affect the time, attention and support we’re able to give our daughter, who already needs a bit more than average. It would, if I’m being honest, also be hard for us as parenting even without added complications is tiring, especially when you have no support from family.

On the other hand, we wonder if a sibling could be a wonderful addition to our daughters life, both now and in the future, and to ours.

It makes me so sad to think if we decide not to TTC that we will never meet our second child and know them like we know our lovely daughter. But equally the fear of making the “wrong” decision is weighing heavily on our minds. I would give anything for a crystal ball!!

If you have a child on the spectrum, did you go on to have another? If so, how did you find the experience? Or if you decided to stop at one, do you feel it was the right choice for your family?

We’re really torn and would be so grateful for any perspectives or experiences others are willing to share.

Thank you.

I think everyone seen it differently. I have a 5 year old who presents similarly to your daughter. He can speak but not isn't yet conversational. I agonized a lot about having another child. We eventually went on to have another who so far is NT. However, I'd say it fully depends on who you are and what you think you can handle. For us, we've decided to stop at two kids as need to ensure we have the time and money to support the kids, especially our first.

We had dc2 with a 3y age gap.
Dc1 had been tricky from birth/very young. No sleep etc. Now looking at asd/adhd diagnosis. Nearly 13yo.

Dc2 also seems to have something going on which i though pre school age was adhd but now at 9 is also ocd like.

If your dh has asd in family plus you are both (?) 40s i definitely would not.
I dont think with a 3yo you can anticipate how unrelenting sen parenting can be.
We had awful reception year and y1. Its a fight to get schools to acknoledge anything and get diagnosis. My friend is trying to get ehcp for her child who school refuses.
There really isnt any schools right for academic asd kids. Schools say xyz but dont necessarily make any adjustments.
10% of dc school year had asd diagnosis. Which is high but if rates are increasing it wont be that uncommon.
Its also things like even at mainstream perhaps the child cant cope with before or afterschool clubs.
Or has few friends. Severe anxiety and depression and self harm.

My 3 (nearly 4 year old) has a speech delay and is awaiting an autism assessment but it is very likely. I have just finished doing his DLA form and looking at schools has been so stressful!! He has been going to nursery 2 days a week since February and he absolutely loves it!! He spends most of his time there playing on his own but he has bonded with the staff and he loves counting up to 100, can recognise his numbers up to 20 and has started adding (Number Blocks has a lot to do with this though!!) and he knows his alphabet and can recognise letters but socially he is still developmentally about 2 years old if not younger.

I 100% want to have another child. I am an only child and I always wanted a sibling and I think it would have definitely benefited me socially. I was also diagnosed with autism as an adult so it is very likely that my next child will be autistic too. I am not delusional though and I know it could be very hard but I think it will be worth it to have the experience of having two children and giving my son a sibling. We are planning to wait until he is around 7 years old though so we will not have two little ones at the same time. I understand that with your age you need to decide right now so I think the best question to ask yourself is will you be happy in 5/10/15 years time if you don’t try to have another child now? I know that wouldn’t be.

I have two kids. DS is 5 and autistic; DD is 2 and so far I think not, though she's very young to make that call for certain. DH is autistic and it runs in his family. Our families are supportive but live far away; I have a pretty flexible job.

DH is now generally happy with his life - friends, career, hobbies - but his school days were very challenging: all but expelled at one point, periods of what would now be called EBSA/school anxiety, lots of struggles around friendship. DS has hit some very, very rough times especially between 3-4, but is doing better in a supportive school and an EHCP. Getting the EHCP was one of the hardest things I've ever done and I didn't have as bad a time as some people; but the constant seeking of support, working out systems, writing about your child in the worst possible light really wears you down. And then you also have to parent a child with quite challenging behaviour in my case.

I have and do worry that DD has drawn a tough lot. We parent and manage the kids' childcare etc. to meet DS's needs (and DH's too, if I'm honest). He can be explosive, and though its not usually directed at her, eventually she'll be old enough to see her brother having a meltdown and know that it's not "typical." Already, I plan time for them apart at separate activities so that she has one parent's total focus for periods.

But my two love each other so much. They play and laugh together. My DS reads to my DD. I feel like my heart bursts every time they have a conversation. And DS has learnt so much from having DD and being a big brother. I appreciate that I don't have an autistic child with significant support needs, who is verbal, and who I am not a 24/7 carer for, and I don't have two autistic kids - maybe I'd answer differently then.

Chosen to stop at 1 child. He's 4.5 non verbal and have high support needs, if we had a second whether they were NT or autistic it wouldnt be fair on them as we couldn't give them the time or resources a child deserves.
He needs 24/7 care and been told to be prepared that he's likely going to receive a learning disability diagnosis in the next couple of years so that's unlikely to change much in the near future.

Personally for me which not might be right for you I would not have any more children. We had our children very close which was a benefit. However it took time
to realise / get diagnosed an ASD child. Fine if they are only “ASD” (plus the usual SPD / adhd etc) however PDA is an absolutely killer. It’s not fair on the child they hate it. Not fair on the family as trying to survive. Plus the siblings hate how their life how is compared to their friends (I’m not comparing them but the siblings see the massive daily struggles)
.

you just can’t predict. Plus pda opens a can of worms fighting for an EHCP and then ensa plus no school and being a carer 24/7 for years is

Spending thousands on reports being a carer and no life. The child doesn’t like it either. Such a hard way to exist

if I knew this was my life I wouldn’t of had any children to be fair to all of them

I'm not sure the problem is that you could have a second ASD child. I would warn that the problem would be that you have a nt dc. Ideally, you will change your lifestyle to accommodate dc1 autism. A second autistic child will then be likely much easier than a neurotypical child. E.g. all our dcs are autistic, so we travel and socialise far less than families with nt children. A neurotypical child would likely want playdates at home, go on active/social holidays and days out. This would be difficult to accommodate with an ASD sibling who would find loud playing noises and strangers in the home difficult as well as changes to routine and likely will trigger meltdowns. Also asd friendly Christmases and birthdays are different (speak boring and without magic and fun from nt perspective) for ASD dc than they would need to be for nt dc. In my experience, if everyone is ASD it is perfect, as good or even better than everyone being nt, but half and half is a nightmare.

For me I decided to stop at one and it was absolutely the right decision. It's a really difficult decision and only one you can make with the information you have currently. I was fairly certain by 5 he was going to have life long care needs and now at 15 I know I was absolutely right. It was the best decision for ds and me. Your little one sounds very different to him at the same age. I was 21 when I had ds. You need to think very carefully whether you could cope with a child who could potentially have more severe needs due to your family history. It's total guess work unfortunately, you have to do what you can live with.

DS was difficult from birth, then slight speech delay and SPD diagnosis from 3. Never quite reached the diagnosis point of ASD but there are definitely some signs. Has always been tricky, fun and cheeky and gorgeous but still tricky. DH family has ASD is spades, I have ADHD so I knew something was on the cards.

Had DD 4 years later and knew she was different from my son straight away, much calmer, anxious and settled. DD has slight ADHD but not SPD or ASD.

A friend of mine sent all her ‘things’ off to get tested for genetic disorders or whatever. I don’t know what the ‘things’ where, I didn’t ask whether it was gametes or fertilised eggs etc but she was older and didn’t want to ‘risk’ it. She spoke to a fertility specialist about the risks, so there is that possibility?

DS is 6, not diagnosed yet but very likely.
he also had a speech delay at your DD age, and his talking is absolutely great now but behind conversation wise, has improved over time.

we went back and forth about a second for years, we have a 5 year gap.
DD came and so far is showing no traits like her brother.

she has been the best thing for him to be totally honest. He is obsessed with her.

if she was to show traits I would handle it a lot better this time I think due to knowing more. And knowing the help that is there.

I have a DS who is 11. I'm the same age as you and my husband I decided to be 1 and done.

I'm pretty sure DS has ASD - he has sensory processing sensitivities particularly with noise. He was speech delayed until just before he started school but it was like he was taking everything in and it all came out!

I'm the eldest of 4 and my DH is the youngest of 3. I don't think either of us really got a look i parenting wise as we grew up and so that was a big factor in deciding not to have anymore children. We can give DS everything he needs without anything being difficult. I love that its just the 3 of us, we are a really close family unit.

More importantly, DS tells us in no uncertain terms..... "I don't want a brother or sister Mum, ai like it just us"