Having another child when your first has ASD?

[Prol]

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?

Not all autistic people/people with ASD agree about the term they prefer. It’s best to ask the person.

My youngest was diagnosed with asd just after he turned 2, his older brothers all have traits though , as do I so I think it's from my side

I wouldn't have had any more if he'd have been my first.

I'm not sure the world changing would help, just for a start my 3rd hates noise and my 4th just loves it, especially his own! Not sure how the world changing could accommodate both of them

My son was born 5 years after my daughter. He has severe autism diagnosed age 3, non verbal, challenging behaviour, not fully continent (age 13) and will always need constant 121 care and will never live independently. My daughter was also diagnosed with autism at age 13, and has managed in mainstream education with extra support. So for me both children have autism with the second much more severely affected than the first

I'm the oldest and I'm the only one with an autism diagnosis. Neither of my siblings are diagnosed but we all share traits I would say.

Is there autism on your side of the family or your exes? A child with a different father will have different DNA. I wouldn't let it stop me. Yes I struggle but I am currently trying to have a baby and hope that understanding how autism affects me, I could help an autistic child cope better than I did growing up undiagnosed.

I know quite a few families with more than one child and at least one of those with ASD. I think it's a positive thing, it can be especially lonely for children with ASD and siblings can make for a less lonely existence. My friend tries to make up for her son who has quite a lot of challenges and no other kids around by lots and lots of playdates but it's tricky sometimes as my son or myself aren't always in the mood and her behaviour is more challenging which is the real reason, but I always want to help because her son is great.

I'm not saying you should have a childfor the other child. But siblings can be a beautiful dynamic even when things go wrong, my brother is a nightmare but I'd rather have him than not

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.

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.

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

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.

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.

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.

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.

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.

It's the Dads age that is important too

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.

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.

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.

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.

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!

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.

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

@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.

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.

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.