Have a 2nd child when 1st is neurodivergent

[SherbertLemons]

Hi all,

Also posted in the SEN threads but posting here also.

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 daughter’s 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. I appreciate it can be an emotive topic.

Thank you.

My husband and I are immigrants so we’ve never had any help. Our daughter is autistic and we have a younger son as well. Like with any pregnancy, it comes with worries and you have no guarantees, but our son very much completed our family. He brings some extra silliness to all of us :)

It is definitely a balancing act - making sure we meet our daughter’s needs while making sure we aren’t forcing our son to have a restricted life. We feel guilty sometimes because there are things we just don’t do as a family that my son might really like, just because we’ve always been used to avoiding noisy, crowded, bright lights sorts of places. We have found ourselves splitting up regularly so I’m grateful I have a coparent in this.

it’s not my son’s job to look after his sister but having him to play with when they were younger was wonderful. They shared a room for a few years and he helped her at night - not by doing anything, just by being there. It’s great on holiday as they have each other and it’s not just all us, all the time. But this is obviously just our family, and what worked for us and of course anything else could have happened. Our son isn’t neurodivergent - if he had been, it would be very different.

It's such a difficult decision! We also have a DD with mild ASD. She's our third child and we didn't have any more - not because of her ASD (she's 12 years old and a delight), but because we'd never planned to have more than three.

If you have one child with ASD, I think the chance of a sibling having it is around 10%. In your particular set-up, I suspect the chance is probably higher, due to you (and presumably your DH) being older parents.

There's also your DH's family history of ASD to consider. Were his relatives with ASD diagnosed years ago, in which case they were probably quite severely affected? Or are they currently children/young people with mild ASD who probably wouldn't have been diagnosed with anything 30 years ago? If the former, I would guess (although I'm no expert) that the chance of your next child having more severe ASD is higher.

That said, our autistic DD is a joy and we wouldn't have her any other way, so having another child with autism doesn't have to be a problem. But, it undeniably has its challenges. You clearly adore your DD, but it sounds like having another child with additional needs might be too much.

I wonder if your GP would be able to advise you, or refer you on to somebody with specialist knowledge? Best of luck coming to a decision, either way, and I hope you'll both be at peace with whatever you decide.

We have a 12 year old who is severely dyslexic, highly anxious and has mild ADS. We also have an 8 year old who is mostly neurotypical (mild ADHD, but no need for medication etc).
No family support whatsoever.
It’s hard and amazing at the same time. I don’t regret having two - they are so different, I’ve learned so much from them.
But its also been incredibly hard .

I have two wonderful neurodiverse children. At the time we TTC the second my first was 2, I was beginning to suspect autism but was still quite nieve about how full on his care needs would be.

By the time she was born my then 3yo was having a lot more behaviour difficulties so the first year of parenting an autistic toddler and newborn was really intense. Luckily the second was an easy baby and pretty much lived/fed/slept in a sling for the first year, as the toddler needed constant hands on and there wasn't a safe way to put her down. If you'd have asked me during that year I'd have probably advised against, as I don't feel it was really fair on youngest.

At around age 5.5, things started to get easier with the eldest, just in time for things to get harder with the youngests emerging needs. We're still a bit in the trenches with the youngest (currently 5, waiting on assessment and in the middle of sorting EHCP) but we're getting through.

But the other side of it is that when I see them together now, I'm so glad that I was still nieve enough to take the plunge with the second. I feel like I've been through he'll and kept going, and managed to come out somewhere really amazing. They are so intune with each other and really understanding each others needs and adjustments. I don't have the worry of ones needs impacting the other because they both have similar needs, so more often then not an adjustment for one also helps the other, and instead of trying to force one into a neurtypical world, we've restructured our family into a neurodiverse unit where we all fit.

There farther was unfortunately not up to the job of parenting them (it can be challenging), but honestly that's his loss and life works much better now we've jettisoned the deadweight. I've also had to give up on having much in the way of a career, as their care needs require me to be around more, but I don't really regret any of it. I love been around for them.

I've got four children @SherbertLemons

Three of them are autistic. All four are very different from one another. They're adults now.

I believe they're all happy. If I were you, I'd go ahead and try for your second baby.

I was diagnosed as autistic myself in my 60s, which really surprised me, but the diagnosis helped me to make sense of my life.

We faced this decision, with a suspected ND age 3 and we went for it and ttc. Our eldest has higher rate DLA now and has autism, anxiety and emotional regulation issues and needs a lot of support. Our younger child is much less impacted but also diagnosed autistic. I had always wanted four but at this stage we decided two was enough.

We get so much happiness from our younger one who is more able to communicate with us. We love our oldest too of course. They get on well with each other so for us it has worked out well, but we did know it was a risk when we decided to TTC.

I’m the younger ADHD sibling of a brother with ASD. My parents didn’t cope well. I felt that his violence towards me was ignored. But his rigidity and my opposite was the worst case for making everyone happy. He thrived on the same, I craved novelty. Because his behaviour was what it was, his needs were met and mine weren’t.

But then I know a family with 4 ND kids and they are wonderful and happy.

You have to think very seriously about the medium risk factors, not just serious risks.

I wouldn’t do it OP.

I am autistic, diagnosed in my 50s after my daughter’s autism diagnosis, and her older brother has ADHD. They are 2.5 years apart in age. Their needs have very often not aligned i.e. their needs have often been diametrically opposite. I only have one pair of hands, one brain, and one allocation of patience and coping-ness!

As you have one ND child you’re more likely than not to have another. My children are wonderful but my god it’s been hard for ALL of us in different ways. Meeting the needs of one child is hard enough, but when you add ND into the mix, well….

We had DC2 before we realised DC1 was autistic.

Dc2 turned out to be autistic too - and I won't lie, I regretted having him for ages.

He had developmental delay and was a very difficult toddler, and at the same time DC1 was having loads of difficulties at school.

I went through the diagnosis and then the EHCP process twice in quick succession. The amount of paperwork, meetings etc was insane. The stress of everything nearly broke me.

But we did come out the other side, both DCs happy in the right schools, DC2's development came on leaps and bounds with the correct support, and things gradually became so much easier. So ultimately I have no regrets and would make the same decision again, but those early years were HARD.

And I’ve just read the response directly above mine, from @MrsTerryPratchett, which says it far more clearly than I could. 100% agree.

Both my DD’s are autistic, the 2nd more severely and will need life time care. I’m 43 now and she’s 19, I worry what will happen when I’m not around, something you need to consider even more as an older parent. My first dd wasn’t diagnosed when I got pregnant with the 2nd. After having dd2 we asked professionals what the chances were of a 3rd child having ASD and we were told 60%. At the time we believed autism was just in dh’s side but now I’m going through diagnosis. We decided against a 3rd and I was deviated as I wanted a big family but as dd2 got older I couldn’t think of anything harder than having more dc with possible autism.

Also I’d like to say - my children are 19 and 21 now, but it can still be bloody hard work!!

DS1 autistic, DS2 NT. It's hard for DS2 though but we didn't know that DS1 was autistic when DS2 was conceived...

And I have one with ADHD and have been able to meet her needs well. Nothing to juggle!

Now I have her I wonder how I would have coped if I’d had an only with ASD. Not as well!

My dd2 was 2 months old when her sister was diagnosed. Dd1 is autistic with several mental health disorders, dd2 has adhd and dyslexia. Mental health issues run in exh’s family and he has autistic traits.

I wouldn't. DS is autistic and so glad to be an only child, he absolutely relishes in not having a younger sibling bothering him or wanting to play with his things and also loves the space and peace and quiet that he can have because he has no siblings.

we have girl / boy twins - I think you have a romantic idea that if you have a sibling for your daughter they will get on .... they might not! My twins are both ND but also high functioning as in they are hopefully going to uni later this year .... but their ND traits are expressed so differently they annoy each other with one being very active and always making noise .... and the other getting sensory overload and seeking peace and quiet ....

My DD is autistic. High functioning but always a child who has needed a lot of attention. She's our 3rd. Only DD is ND.
I did want another but DH didn't. With hindsight I am glad as I think DD has benefitted from my undivided attention. Older DC are my SC.

We have one dd with ASD and I am very glad we are able to parent her exactly as she needs. There are no compromises to keep things fair for another sibling. There is no balancing of competing needs.

all our resources can go to meet DD’s needs. If she needs therapy or equipment, we don’t need to worry about what another child might need. Our entire household is set up to be ASD friendly for both me and dd. If we had a NT sibling in the mix, we wouldn’t be able to do that. We can plan holidays that we know dd will enjoy.

What @MrsEmmelinePankhurst says is very true.
It is a constant balancing act to give both children what they need, and to protect the younger one.
In our case, i think we are doing a reasonably good job - but that means our life revolves exclusively around our children.
Our jobs, our hobbies, the house - all is selected to ensure both get what they need.
I really don’t like my job, but its flexibility and requires no travelling. Neurodiverse kids are expensive….. In our case, we are paying for a private special school as oldest according to authorities is fine in mainstream. he’s not fine, he’s just not violent.
There are no evenings out (except the ones that are for one of the kids - luckily one loves theatre, but we can’t go as a family), certainly no weekends away, etc
Its fine, I’m ok with it, but its incredibly hard work.

Your age makes it harder because my answer is honestly to get to about age 5. 3-5 were the toughest years for us. A good week then is out bad week now and it’s still all consuming but I finally feel like I’m not totally neglecting DS2. OTOH we had no clue that things with DS1 were hard till 2.5/4 because our lives revolved around his needs so he was generally regulated.

I’d also look at what you can afford in terms of private OT, speech language etc. even with professionals you need to do a lot at home, but it’s more doable than when you habe to research everything

and @MrsTerryPratchett completely agree! just forgot to mention you in my post

I’m going to be very blunt and honest about this so please be respectful of my opinions I know this level of honesty from SEN parents can be villainised.

The answer to your question lies entirely on what your second child is like OP. ‘Mild, bright, aware of everything, coming on in their own way’ ASD might seem manageable and ok but ‘non verbal, non toilet trained, no idea of danger, honestly seems like they’re possessed most of the time, rejected by 17 schools because no one wants to deal with this, can’t take them anywhere or do anything, always naked, constant state of nervous anxious mess having to look after them, making ‘that’ noise 24/7, trashing the house, climbing the walls, wiping poo everywhere and trying to eat it.’ Well that’s going to completely ruin not only yours and your daughter’s lives. You will be absolute shells of the people you were before and feel like you’re forever trapped inside a prison made of the new very high needs child.

There will be no holiday childcare, no wrap around childcare, no baby sitting. No one will touch looking after them even if you throw money at it….trust me we tried. We had no history of ASD, no risk factors, we were young ish (I was 26 DH 32) high flying professionals who never even considered this might happen to us tbh. We had a second child before we knew anything was different with DS, it was right around the time she was born that it started to show he wasn’t developing normally. He was 14 months when she arrived.

She is thankfully neurotypical and completely functional and actually very helpful. I’m not joking when I say that had she been like him they both would have ended up in care. It was the worst 4 years of my life. I had a full blown breakdown, lived In absolute hell, DD got outsourced to family and nursery constantly and I still feel like I missed her entire baby/toddler stage too busy dealing with immensely high needs DS. He made every waking minute unpleasant and awful. No idea how DH and I didn’t divorce I think we just couldn’t do the paperwork we were so exhausted because DS never slept. We joined a support group in our local city of about 150 families like ours and all of them are living in hell and hate it.

AVOID AT ALL COSTS.

Of course you may get a functional lower level of need, or neurotypical, and be very glad you went for it but honestly knowing your risk factors that would be a gamble. Had we known about DS before having DD we wouldn’t have had her, would have been too much of a risk.

I wouldn’t do it. You would need to split time, resources, and money when you already know your current child will have additional needs from you in order to thrive. Whai is a second requires even more care? Or what if they are NT and end up feeling left out as everything revolves around the elder child? Just too risky in my opinion.

It’s also worth keeping in mind that girls famously present higher functioning than boys (we’ve seen this first hand and I’ve read endless literature on the subject when DD was a baby trying to figure out the odds she would be like DS). The type of autism that impacts function at a young age (not the type that’s only diagnosed late secondary school or adulthood) is much less common in girls than boys. So if you have a girl who is presenting the chances of having a sibling with ASD also is higher. Especially if the sibling is a boy.

I remember reading quite a few studies that looked at sibling autism statistics when DD was a baby and thinking to myself ‘well we still have a big risk factor because of DS but at least he’s a boy and she’s a girl so our chances are the lowest they could be’ from memory it went like this.

Boy- girl - lowest risk
boy-boy
girl-girl
girl-boy- highest risk

that being said I know of one family who have a high needs girl and a very low needs boy so I suppose it can happen. But that’s just one of our 150+ group