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Having another child when your first has ASD?

181 replies

Prol · 29/06/2022 18:34

Hello everyone.

My son, who is 7, has recently been diagnosed with ASD (autism), although we were told by the psychologist that he would have been diagnosed as 'aspergers' previously. He only got the diagnosis as I pursued it privately, school didn't even think it was necessary and said he doesn't really need any extra support there, he won't be eligible for an EHCP or funding or anything like that. I write this because DS doesn't struggle with the majority of the classic autism symptoms and many people (friends and family) describe him as an easier child than most his age. His main difficulties are in social communication; for instance, understanding when someone is finding him boring, or annoying, or interacting with his peers. He has no associated learning difficulties, in fact he is incredibly clever and well above average for his age. He is very independent - makes his own breakfast, lunch, washes himself, organises his homework.

My partner, who is not DS's dad, things he is just 'eccentric' and a bit 'geeky', and really doesn't think he needs the label all that much. He's a firm believer in taking everyone as an individual and just thinks DS is his 'own person' and should be treated as such. He is very much in favour of us having a child of our own. I am a little unsure as I am quite concerned about us having a child with severe ASD - I don't think I could cope. Has anyone had a child with ASD - then gone on to have another (or with a different dad). How did things turn out for you?

OP posts:
tootiredtospeak · 30/06/2022 11:29

I have a DS 21 autistic traits in most of his Dads family none in mine. I now have 2 more children with a new partner who arent autistic. It's not a given but do you think it could be in your familys Gene's or your ex partner. Its something to consider. My son is HF and although very different to his siblings he does okay. He works PT he drives. He has jo social life in a typical teenager way but he has his own interests and hobbies he pursues.

Prol · 30/06/2022 11:27

@greywinds I understand what you are saying, it's really sad that there is still stigma around autism and lots of misunderstanding in the general population too.

I can also see it from the perspective of the young people I work with, who's peers view autism as 'Kanner's Classic Autism', and they don't feel they can relate to that at all, so prefer the terms HFA or aspergers or don't want the label at all.

OP posts:
greywinds · 30/06/2022 11:25

Transition to high school, the social dynamics get a lot more complex and unmonitored as you go up the school years, school can be relatively structured compared to jobs and universities or apprenticeships.

I'm sure it'll all be fine, we all find our path in the end.

greywinds · 30/06/2022 11:23

I always find it a bit sad that people who have a dx of autism feel the need to reject that they have anything in common with people with autism who are 'really autistic'.

You can feel a common identity and embrace it without claiming your level of disability is the same after al, many many disabilities have a range of impairment.

Prol · 30/06/2022 11:22

@greywinds Yes this is what I am most concerned about, the associated mental health issues. I've already thought about lots of possibilities as DS gets older, particularly years 7, 8 and 9 which can be brutal for all children, and the thought of perhaps home schooling (I am luckily able and in a position to).

OP posts:
Prol · 30/06/2022 11:20

@lolil Of course, it's often times not without struggle, I don't wish to diminish that. There are lots of people with ASD who struggle, there are also people with ASD who manage well. That could be said for lots of people in life, ASD or not.

According to DS's diagnosis, his issues are social communication, and very slight sensory seeking behaviour, which is why he got his diagnosis. He didn't really fit criteria 2 'restricted and repetitive patterns of behaviours, activities or interests' - he has none of these, it was the slight sensory seeking behaviour which got him his diagnosis. His profile from birth was completely what would be expected from a NT child, other than having very high intelligence. What I was highlighting with my post was, autism is such a vast spectrum, DS is a world away from needing 1-1 support, developmentally delayed etc. A lot of people hear 'autism' and assume severity. Hence why, a lot of the young people I work with, reject the term 'autism' as they don't perceive themselves the same at all, they cope mostly on par with their NT peers, and feel it's a stigma for being bullied (which of course is wrong).

OP posts:
greywinds · 30/06/2022 11:19

You have many good reasons for optimism, I'd have another baby in your shoes fwiw.

I'd just want to sound a note of caution - at age 7, it is possibly too early to say how things will be. I know several 'high functioning, Asperger's' types who have had years of severe mh issues as teens and young adults. But I hope this isn't the case for your ds and I'm sure that you'll be able to navigate what happens with a second dc.

The high functioning label is not accepted except in the population for a reason. DLA already differentiates in the level of care required.

lolil · 30/06/2022 10:28

I * think this is where the 'functioning' labels being taken away is controversial. Autism is such a spectrum. There are some who will never live independently and will need to be cared for by parents or the state for their whole lives. Then there are others who are mildly affected, who can get married, live independently, have jobs.*

Well you have to be a little more than 'mildly' affected to get a diagnosis. Aside from that, the other problem here is assuming autistic people who get married, have jobs and live independently are doing this without struggle.

Prol · 30/06/2022 09:47

@rainyskylight Thank you, my DS is lovely. My partner is lovely too, he very much rejects labels and just thinks we should treat every human being uniquely.

OP posts:
rainyskylight · 30/06/2022 09:32

I agree with your partner that labels aren’t always that helpful in mild cases. Thanks Your DS sounds lovely.

SatinHeart · 30/06/2022 09:25

I have DC1 who is on the ASD pathway. Not diagnosed yet but not severely affected, more mild/moderate we think. I was pregnant with DC2 before we realised DC1 was going to need extra support. They are both still very young (4.5 and 2) but at the moment DC2 is having a positive effect on DC1's social communication and they have a lovely bond now (though it was hard at the beginning). I'm aware this may all change, but I know pairs of adult NT siblings who don't get on at all, so I wouldn't automatically blame ASD is the fell out.

Selfishly, having DC2 has helped us as parents not to fixate on DC1's challenges all the time as well.

Prol · 30/06/2022 09:22

I would say with 99% certainty it is my exes side, I would be extremely doubtful that he would go through the diagnostic process and not come out with a diagnosis of autism. There is no autism in my family or in my current partners family. I'm very much aware of the traits now so I am constantly spotting for them!

OP posts:
Staynow · 30/06/2022 09:16

Your son's ASD has come from somewhere, if you suspect it's your ex's side then having a child with your new partner is far less likely to result in a child with ASD then if you had another child with your ex. There's no guarantees with anything though, your next child might not have ASD but (like any child) could potentially have a disability. Do you really want another child is the question really? There are no guarantees ASD or otherwise.

Prol · 30/06/2022 09:16

I think this is where the 'functioning' labels being taken away is controversial. Autism is such a spectrum. There are some who will never live independently and will need to be cared for by parents or the state for their whole lives. Then there are others who are mildly affected, who can get married, live independently, have jobs.

I work with young people who are autistic, the 'high-functioning', who will get GCSE's, A Levels, go to university / apprenticeships, are expected to work and live an independent life. Many of them do not identify as autistic because it is seen - to quote what someone said on this thread - a 'burden' and 'special needs' (in teenager language). I think many people think, wrongly, when they hear autism that it is the severe end of the spectrum, and not those who would have been previously diagnosed as aspergers, for example. I fully expect my DS to live an independent life, there are no reasons currently why he should not. He does 'day-to-day' life with no support, his only issues are with socialising with his peers.

The thread has given me lots to think about. I think once you have one child diagnosed, you become acutely aware of the genetic lottery, even though, objectively, everyone takes a risk when they get pregnant.

OP posts:
nokitchen · 30/06/2022 09:07

It's a tough decision and depends on so many factors. My elder brother has autism and was ten when I was born. He was and still is aggressive, totally dependent for all his care needs and very controlling. I can't imagine how my parents would have coped if I had also had autism. As it was our whole family was centred around him 24/7.

My parents refused to consider care for my brother and when my mum died (with advanced dementia) at 93 this year my brother was still living with her and still very much ruling the roost. He has finally moved to a wonderful Mencap home, aged 67. Mum's expectation was that I would look after him at my home for the rest of my life but after decades of caring for both of them I am pretty much broken.

Underhisi · 30/06/2022 08:59

I think whenever anyone is thinking of having a child or another child they should think about the scenario of having a child requiring greater support and how they will manage that.
We have a child with 'severe ASD'. The amount of support our child requires did contribute to our decision ( although not the only reason) to not have another child.
The chances of you having a child with very high support needs due to ASD is still small and there are lots of other conditions/reasons that a child may require a lot of support. It is risk that only you can decide/ not decide to take.

slowcookerforone · 30/06/2022 08:49

Prol · 29/06/2022 18:54

Sorry - I am only 28. Age is probably important here too!

It's the Dads age that is important too

slowcookerforone · 30/06/2022 08:49

motogirl · 29/06/2022 18:51

My eldest has asd, my youngest doesn't, same dad. I was heavily pregnant with dd2 when we started the diagnosis pathway at 2. I would have had a bigger gap if I had known but it was otherwise fine in retrospect. Dd2 (they are now adults) has helped a lot from around 15, even offering to move with dd1 to university to live with her as at that age she couldn't live independently (actually she waited, went to university locally then did another course living away in her 20's when she had gained more independence skills)

That sounds a real shame for your Dd.

I'm sure you will say she wanted to do it, but I personally think it's so sad she's had to consider your Dd so much that her life has been to serve her.

TheFormidableMrsC · 30/06/2022 08:33

Prol · 29/06/2022 18:51

If you don't mind me asking - has anyone had another child with a different dad? I'm wondering how much / little that would make a difference... for what it's worth, I definitely think DS's dad is undiagnosed autistic (aspergers).

Yes. My eldest is NT but my youngest from my second husband has ASD/ADHD. He definitely gets it from his Dad. It is genetic. We have been asked to take part in a genetic study but we are divorced and ex-h has disappeared therefore it won't be possible for us.

ofwarren · 30/06/2022 08:24

Throwaway4680 · 30/06/2022 00:07

Families I know: 3 boys. Mum late 30s/early 40s.

First two have ASD (meltdowns, angry, emotional, no eye contact, sensory issues). Third child is totally different and very social.

I know 3 families with an ASD diagnosed boy and undiagnosed girl (with lesser difficulties).

Another family with 4 children.
Eldest is tube fed, non verbal. The others all have mild learning difficulties.

Basically you cannot predict this OP. Best of luck to you whatever you choose.

This

I'm autistic, my oldest is and so is my middle child. Youngest is NT as far as I know.
Middle child also needed an organ transplant as a baby so is medically vulnerable and my youngest has a bowel issue so isn't continent at 6.

Having ANY baby is a risk of some sort of illness/disease/condition. If you can't face the risk of this then it's best not to have any more.

d0ves · 30/06/2022 08:21

This reply has been deleted

This has been deleted by MNHQ for breaking our Talk Guidelines.

Gsds · 30/06/2022 08:11

I have one with autism, he was diagnosed very young. In the beginning I was told he would never be out of nappies, in mainstream school, live independent etc. turns out none of that is true, he’s now classed as high functioning (he hates that phrase), I didn’t have another then because I found work/life very difficult, all the appointments, childcare, sleepless nights and food refusal, and now he’s older I wouldn’t have another as I wouldn’t want to burden him with caring responsibilities if his sibling also had autism with more needs than him. When he was younger I feared who would look after him when I died.
its not as simple as love them for who they are, although I do, obviously.

Prol · 30/06/2022 01:16

Thanks again everyone.

I am only 28 - I would love another DC. I adore DS, and I know I could 'cope' (for lack of a better word!) with another child who is similar to him. I would also love the opportunity to have a DC with my partner whom I love. I also think a sibling would be good for DS, he loves being around other people/children, he's just a bit socially clumsy.

My partner just says, 'so what if we have another child who is autistic, it's another kid who is brilliant at maths and very intelligent! All children and people have their struggles...' He very much does not view DS as disabled, just that he lacks social skills which he can be helped with. I think he is viewing autism from the point of view of DS, who is very much 'high-functioning', not from the point of view of children who have a much more life-limiting experience of autism. I see some of my friends who have children that are more severely affected and I genuinely don't know how they cope Sad

I'm really in two minds. It's so so hard. I have a friend who is my same age, previously NT, had a brain tumour and associated surgeries / treatments and is now severely mentally disabled. So anything can happen in life, to anyone. There are no guarantees. Just tricky.

OP posts:
Throwaway4680 · 30/06/2022 00:07

Families I know: 3 boys. Mum late 30s/early 40s.

First two have ASD (meltdowns, angry, emotional, no eye contact, sensory issues). Third child is totally different and very social.

I know 3 families with an ASD diagnosed boy and undiagnosed girl (with lesser difficulties).

Another family with 4 children.
Eldest is tube fed, non verbal. The others all have mild learning difficulties.

Basically you cannot predict this OP. Best of luck to you whatever you choose.

saraclara · 29/06/2022 23:58

toooldtocarewhoknows · 29/06/2022 20:46

This thread is depressing.

I have two with ASD.

Both beautiful, deep thinking, passionate, loyal teenagers. I love the world they see through their eyes, it's pure and unspoilt, unbiased, accepting and affirming. An supported, thriving and accepted person with autism is such a revelation. We need so much more.

It's our view of autistic people that needs to change, the way they are supported and accepted, acknowledging the unique contributions to society they can bring.

It's the Neuro typical world that's the problem not the people with autism.

I firmly believe this. So many are looking at autistic people through Neuro typical eyes. You can't. Embrace the differences.

They can't and don't confirm to what society expects. It's society that needs to change to accommodate not the autistic having to mask and feeling stressed trying to conform.

Those with autism who are able to mask, will do. At the expense of their mental health. Those not able to mask will be societies misfits. All autistic, all not accepted and not able to truly show the world their uniqueness.

Yes they are beautifully quirky, deeply connected but often unable to express this verbally. Yes they may have sensory issues, be unable to cope with normal everyday tasks, they may need to stim and tick but so what?

We need more autism, not less.

Please do not dismiss the huge difficulties and stress that many parents of severely autistic children endure. I taught such non verbal, highly anxious, self harming and often violent children for several decades. I met so many wonderful parents, whose lives were incredibly affected. Threats of being thrown out of their HA homes because their children would scream all night and disturb their neighbours, having no social life, never having any time as a couple because no one would look after their child/ren, having to give up work for the same reason (and with the consequent financial problems), never able to relax in their own homes...I could go on for ever.
But most of all they loved their children, and every day, feared for their future and what would happen to them as adults, especially when they, the parents, died.

I can't count the times that parents sobbed and sobbed on my shoulder. So don't dare say that we need more children with SEVERE autism. Seriously if those parents heard you say what you just posted, I'd have to hold them back.

I'm glad your own children are everything you say they are. You're lucky. Don't disrespect those parents who aren't.

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