One ds with ASD - dare we have another child?

[Chelseagirl72]

I know there's no 'right or wrong' answer to this one but I would really welcome some thoughts. I'm sending myself mad with this going round and round my head.
We have one ds 2.8 years and currently going through the process of dx for asd.

DH and I are knocking on a bit (very late 30's) so if we are going to go for another child we need to crack on. I'm so scared though - what happens if we have another child with ASD? Of course I would love them regardless but I worry about how I'd cope - I can barely cope with one.

I worry that if we had another child, how ds would deal with it - he has huge issues around interacting with other kids, the sound of a baby crying sends him into meltdown. But then I've also heard that kids with ASD can benefit from having siblings - like all kids can.

Also how would I feel if another child didn't have ASD - would I be constantly comparing? Would it be too much for that child to cope with - having a sibling who requires support when I've long gone?

Obviously there's no genetic test for ASD so I know I'd be worried throughout my whole pregnancy and until the child was at least two - constantly looking out for asd 'signs'.

I know that several of you on here have more than one child with ASD/ complex needs and I apologise if my post comes across as insensitive.

I also know that I tend to worry about things too much!

Thanks LeonieDelt - I appreciate your honesty. That's one of the great things about this forum - we can be honest with each other.

One of ds's consultants said that 'roughly the odds are one in ten' of having another child on the spectrum but I know that other factors come into play - parental age/ genetics etc.
To me, one in ten sounds like quite high odds. But then if we don't go for it, will we always regret it?

sigh as you say, it's a hard choice either way.

Ds with severe autism is in fact my fourth child and we decided that he would be our last.

It was a huge shock to discover ds had autism and we decided four was enough especially because he was incredibly difficult to manage.

When ds was seven I found myself unexpectedly pregnant and was devastated. ds was still very aggressive and destructive still wore nappies and didn't sleep.

We did a huge amount of work to prepare ds for a baby entering our house but we also made plans for a childminder for the baby should it turn out to be a disaster.

Dd was born ten days after ds's eighth birthday, the preparation paid off, the noises that he was prepared for didn't bother him

Dd brought him beloved beyblades when she was born and she had to fit in ds's routine. I didn't sit cuddling dd tbh because I thought it would annoy Jack.

He was fascinated by her though and we made a big thing about him being her best brother (and she always had the biggest smile for him)He was gentle with her and he'd never been gentle before.

Even now they openly adore one another. Dd calls him "my boy" and ds calls her "Foofy" He will play games with dd and let her win, she is always considerate of his needs first and they are both fiercely protective of each other.

If I tell either of them off they rush to each other,comfort each other and usually reprimand me for upsetting them.

They are a proper team and have benefited more from having each other than anything else.

The older ones always made allowances for ds and he never had to consider their needs but he did with dd. The others let him get away with ignoring them but dd never has if she wants interaction from him she will pester until she gets it.

She knows he's "special" (her words) and makes allowances but she also gets away with making more demands from him than anyone else would ever dare.

Dd has autism too.

I would never have planned a child after ds but dd has been the biggest blessing and autism second time around is easier it has to be said.

As for how I cope now I'd say that the kids and the autism are the least of my troubles.Any stress usually comes from fighting for the education they need more than anything else.

Ds and dd are exceptionally well behaved and the oldest three are tolerant, independent and resourceful, our routines run like clockwork so in all honesty I think I have an easier life than the average mum of a large family to be fair.

We didn't know dd1 had autism when we were trying and had dd2. Dd1 was dx at 5 and dd2 was about 18 months when we faced facts that she too had autism and she was dx at 2.
Both the girls are lovely but dd2 is worse than her sister in her behaviour and in someways is more effected to the outside world but dd1 concerns me more.
Somedays it's not the girls that wear me out but the double appointments, double amount of professionals, double paperwork and double the fight.
They are great for each other and dd2 has taught dd1 so much.
We have decided to stick to just the two
Siblings are great and teach so much but know you will spend the first year or two watching for signs!

Maybe it's the peripheries then that are easier I don't know Yes I have to deal with dd's needs as well as ds's but I'd have had to deal with any additional child's needs.

I suppose the addition of one to four already doesn't seem as big an upheaval as a second child undoubtedly did. I think once you have three the others don't seem a big step any more really.

Added to that I started early intervention with dd at 17 months so she really is a well managed child and far easier than her peers and the autism is mostly unnoticeable nowadays.

We went for a third child after ds1 was diagnosed...mostly, it has to be said, to give dd the chance of a sibling who she could play with and who could share the 'journey' with her (ds1 is pretty severe)

But wow, it felt like a very brave and foolhardy gamble to be taking. I had the 10% chance statistic in my head, and kept repeating to myself that that also meant a 90% chance of the new baby not having autism. I was tormented with worry throughout the pregnancy and for the first 9 months (until there was a most definite and deliberate finger point!)

I have read studies suggesting the odds are more like 30%, particularly with boys, but I don't think anyone knows for sure. In all likelihood it depends on the genetic makeup of each individual family. So we could have actually had close to zero chance of another autistic child, seeing as there is no-one else going way back in either family who could be said to have any form of autism. And then there are families where one or both parents or grandparents are on the spectrum and their odds may be much higher than 30%. I think it's impossible to give one set percentage risk

We now have ds2, who is absolutely NT and we are thankful every single day. I can't say he and ds1 interact much but they have already taught each other more patience than either will ever know, and are gentle and loving towards each other. And dd is over the moon.

Things could well have gone the other way but for us it was a gamble we were prepared to take.

When I conceived dd I do remember thinking ooh the odds are low, no ASD in the family,paed thought we had just been unlucky, ds has normal chromosomes and it's a girl the odds are looking good. Then dd did in fact have autism and suddenly paed advises that my older ones have genetic counselling before having children of their own and the odds of having a third with ASD are 50/50 .

We had DS2 before DS1 was dxed and he is 100% NT. There is only 16 months between them (not good at family planning!) and we are so pleased that DS1 has a sibling. They are now 6 and 4 and most of the time play brilliantly together. DS1 is teaching DS2 his letters while DS2 is helping DS1 build lego. DS2 does get fed up of hearing about bus schedules etc ad finitum but has got quite good at telling DS1 when he's had enough.

It is a bit odd having children in seemingly parallel universes but they do complement each other and are very loving towards each other most of the time.

I wouldn't want to have had a third child - too old now anyway! - as that would have been too much for me.

I mainly lurk on these threads (we have AS in the family). Could I ask: is it thought that autism is more likely if the parents are older? (Sorry if that's a naive question.)

I was 27 with ds and 35 with dd, dh would have been 34 and 42. I think lots of things are speculated on as being a cause and being older is just another one tbh.

Thanks, I'm sure you're right about lots of things being speculated on. It must be very hard for you, OP, to make the decision.

silvanathegrey: I have read research that suggests there may be a link between autism and paternal age - as there is between downs and maternal age but as insanityscratching says, no one really knows what causes it so could be just one of many factors. Or clutching at straws!

zzzzz: I agree with you absolutely. That's a good way of putting it. I guess it's similar to people with a NT child, planning for another: you can't imagine coping with two or indeed loving another child as much as you love your first but then you do.

I love what I do too and would have liked another after dd tbh. I'm already suffering empty nest syndrome and the older three are still at home but tend to come and go a lot. Going away with the youngest two tomorrow and constantly feel like I've forgotten something because two seems a bit easy when five is probably more interesting .

I had dd1 at 21years and dd2 at 26years. I have plenty of friends who are younger parents with kids with Asd.

The link between Downs and maternal age is, I think, pretty well established? So older mothers know they are at greater risk.

It sounds like any link between parental age and autism is much more speculative. It's just that if you already had autism in the family, and were trying to make a decision like the OP's, you might or might not want to factor in parental age.

Are there any theories about how parents might reduce the risk, I wonder? Or is that indeed clutching at straws?!

It sounds like being ready to dive in with early intervention at a young age would be a good way to proceed if you did have another child.

Leonie. Bastards.

We've had little professional support tbh although swift referral for assessment at 13 months. I put in place my own early intervention at 17 months which is easy when you have honed your skills on number one and dd was statemented at three (20 hours per week). Dd had a developmental age of 6 to twelve months at diagnosis and bleak prospects and now she is 9 came top of her year in numeracy and literacy last term, has friends and the autism is pretty much unnoticeable indeed no one who has been to see her in school can pick her out from her peers.

I have just one child with ASD and I feel strongly that she will be the last, so much so that I've had a termination in the past because I think it would be wrong to bring any more children into our family. I have my own health issues too, so DH would have to manage a lot of the parenting on his own as well as dealing with me and his ft job, and that just wouldn't be fair. I also don't think I would be able to manage all the various appointments, therapies, structured parenting etc if I had another (NT) child and if I had another child with SN, juggling two lots of statements etc would drive me to breakdown I think.

I read a lot of posts here (have namechanged) about how hard it is to juggle 2 or more children with SN and it really does sound like at least twice as hard - and I find it hard enough with just DD. Also, we've had to put a lot of financial input into assessments, statementing etc, so now DD is settled at a great private special school, but it would be impossible to do that all again for another child. She's had a lot of intervention but we've only been able to put in so much because she's the only child we need to worry about.

Personally I think the chances of having another child with ASD would be very high for us, due to the number of other family members with ASD and traits of AS in both DH and myself. And I know lots of families of children with ASD who have more than one on the spectrum - often undiagnosed, or perhaps with conditions like dyspraxia so they're missed on the official stats, but can still be just as difficult to manage.

Your ds is currently going through the process so you are in a land of the very frightening.

DD (NT) has been the best thing for ds. We are expecting our 3rd any time now and whilst we know where we are with DS (ASD - although of course no-one is certain of the future) the fear of ASD or SN in general just isn't there as it was. I am no longer certain to my entitlement to an NT child, and discovery of this child's needs are as eagerly awaited as the discovery of his personality, features and talents.

I just pray that I don't have to go through the god awful 'system' again!