If your child has ASD, did/would you have a second?

[Sunfyre]

Hello,

First of all I just wanted to say that I hope that this post doesn't come across offensive, it's definitely not my intention to be abelist or anything of the kind.

I am the mother of a wonderful little girl who we strongly suspect has ASD, although not yet diagnosed. Since having her and researching I've realised that I am most likely ND myself. DH and his family have always kind of described themselves as ND in quite a mild way, they are all big on routines, have certain sensory issues etc. Basically what im trying to say is that our lives seem to have all been slightly brushed by autism, but have been very lucky that nobody has been profoundly affected.

However we are know trying to decide whether a 2nd child is right for us and I find myself worrying that the combination of our genes makes us pretty likely to have another ND child, possibly one who is more severely affected. And il be honest, the thought utterly terrifies me.

I have found motherhood very hard, but I don't fear raising my daughter. I believe she will be a lot like me and I feel very equipped to be her mum. My own mum didn't 'get' me very much so it motivates me to be the absolute best parent I can even though I know it's not going to be plain sailing. But I don't have the same confidence that I'd be able to cope with a more profound presentation.

Did anyone else have the same fears? What did you do?

Oh it’s so tricky isn’t it. I have two teenaged ASD boys and although I obviously won’t be having any more children, I worry about their children and if they will be more affected than my two.

My youngest has always been in specialist education and has learning disabilities too and my eldest has ASD and always struggled academically and socially. I’m now a single Mum and it’s really, really hard to get the help and services that they need.

Not very helpful for you but I guess you have to be prepared for the fact that they may be more significantly affected and how you would cope with that. Maybe think If there was a test for it that you could take whilst you were pregnant would you terminate the pregnancy if you found out that they would be profoundly affected.

My DD (3y8m) has been awaiting assessment for ASD since before she turned 2. I had these fears but ultimately desire for a second has won out, DD2 due in 2 months...

If I knew then what I know now then no. My youngest will never leave home.

Just my experience but I only wanted one and personally I am grateful not to have had more. Parenting resource is stretched further the more kids in the family there are obviously and when there are additional needs this can get very challenging.

Friends with two or more kids and ND in the mix at home have it very tough. Parents’ NDs and their children’s NDs don’t always complement each other in how they need to live life, is another issue I was worried about. But that’s just my experience and every family is different. I don’t know what my friends who have it tough would say about having a second child, but certainly no regrets have ever been spoken.

For me if there's strong family / genetic links I'd be less inclined to have another.

But it's easier for me to state this because my ds has a genetic condition passed form me (I don't have full penetrants so didn't know I was the carrier until after he was diagnosed) so I've been through that decision making.

My ds is also autistic but that maybe linked to his neuro condition or maybe familial because his half uncle is also on the spectrum.

It was my second DC that was clearly autistic before we realised my first was. But they have a great friendship and look out for each other all the time.

Should add any further children wouldn't have been with his dad as we split when he was 1yo (autism is on his dads side with his half brother) so for me autism genetics weren't what I was considering.

But as I'm the carrier and have 50% chance of next child having same condition I decided that wasn't worth the risk.

Not the DDX3X gene is it per chance??!

It's so hard to know and of course there is no right answer here we can only say what we might do - I have two with ASD, I knew there was something with dc1 but didn't really know before we had dc2. If my dc1 had been diagnosed and had some of the issues she later hit before dc2 was here, I might well have not run the risk, my younger one has significantly more issues (and more co morbidities).

We have a lot of people in our family in several generations on both sides who've struggled with mh and life in general

Again speaking for my family, my dc1 doesn't get a lot out of being a sibling, she really would be happy as an only child and tells me this frequently.

I have four nd dc. My eldest was diagnosed before my youngest two were born. I still went on to have more dc. I’m also AuDHD but didn’t know that at the time. We think their dad is likely ND too. Family life can be very challenging at times but I definitely wouldn’t change my dc.

I have one with Asperger's and both he and I are extremely glad I didn't have any more.

I did have a second one. It did benefit DD (who is ND) tremendously and she has come on leaps and bounds since having a sibling. They are very close, though sometimes it does annoy DS as he doesn't understand yet why DD is different to others of her age.

I think there's a lot to consider and lots of factors that would impact my decision.

Age of parents.
If you have the capacity to care for a child both physically and financially.
What family support you have.
If you died would someone else be able and prepared to care for the child.

There are ND children in friendship circle and the parents seem to have to fight for everything. They are fighting for support, fighting for diagnosis, fighting for EHCP, fighting for the correct school placement. Honestly, the parents are exhausted. I don't know how they hold it together. I personally wouldn't want to add another child to that struggling.

The chances of having another child with ASD is significantly increased, and the severity seems to increase with subsequent children. I think if you can prepare yourself that it's a real possibility and are happy then go for it.

I hope you don't mind but I have a slightly different perspective I thought it might be helpful to share. Sorry it's a long one...

My sister is quite severely autistic, with learning disabilities, and has never left the family home (she didn't get diagnosed until she was an adult despite profound difficulties but that's a story for another day.). She will be 39 this year and will never live independently. I've come to realise that my Dad is clearly autistic too, in the traditionally Asperger's style presentation.

Growing up as the younger sister of a sibling with severe learning and behavioural problems was not easy. It involved a lot of sacrifices and there was no room to act out or disappoint. It has shaped me into an anxious people pleaser. However, my relationship with my mum was fantastic and I know my 'normal' successes brought her unbelievable joy. We had zero support and she was quite depressed at times in my childhood. I know I was an antidote to that.

My mum died a few years ago and now I find myself responsible for an elderly autistic dad AND my sister. They're going to need increasing support.

When I became pregnant with my son I was terrified he might inherit the family neurodiversity. Honestly, I didn't know if I had it in me. I still don't. Thankfully at 3, he's showing absolutely no signs and I've taken the risk on a second one, due in November. It still scares me, even though I know the support available is like night and day compared to the 90s when they wouldn't even diagnose girls.

I guess I'm sharing this because it's important to think about the impact your current child's neurodiversity might have on any future children, regardless of whether they are ND themselves, but also what you feel you may gain from another sibling. I think if my mum had known, she wouldn't have had me. But she'd have missed out on a lot of what brought her happiness.

Not sure if that's remotely helpful! Good luck with your decision.

Little miss Bonita the bscl2 gene. It's a degenerative neuromuscular condition. Autism often presents in neurological conditions as a comorbidity as it's a "set of behaviours".

But also because his dads half brother has asd it's unknown if it's Co morbid or he lucked out on the family genetics 🫣🤪

Bonita?! No it's ...!

Thank you all for the opinions I really appreciate people taking the time to respond. So much to think over.

My first a daughter is neurodivergent ( 11 years old) and I have another child a little boy who is neurotypical. At nearly 7 he is a great supportive brother to his big sister who is moving onto secondary school in September. He’s always helped her.

I did, but only after autistic dc1 reached adulthood. He took up all my energy as a child and he spent a lot of time having therapies and being out of school for a period, and I went through multiple legal battles to get him into an indie special school (which was absolutely worth it).

By adulthood he was far more mellow and self-sufficient, though he does need me to be his carer. I couldn't have met his needs when he was a child, and look after a baby/toddler too. He was definitely happy being an only child as a child and didn't get lonely, and liked the calm of being the only child in the family.

Dc2 is 6 now and seems NT, she has a different dad, so a lower genetic risk, though I'm diagnosed autistic too so a lot of the risk comes from my side. She does have quirks so there's a chance she could get diagnosed, but no real issues and certainly none of the extreme behaviours that dc1 had. Dc1 still lives at home but we have a big house where he has the top floor to himself, so he's away from the bustle of noisy dc, and he is fine at home on his own so I can take my younger one out (and on holidays for a few weeks at a time) and give her a fulfilling childhood without being restricted by her sibling's needs.

DS wasn’t diagnosed until he was 9. Dd was 4 at that point. I think she has adhd however she manages fine and the waiting list is so long it puts me off wanting the diagnosis. I think even had I known about DS before having dd I’d still have another, it’s a 50/50 chance. Me and my 5 siblings, non of us have either adhd or autism. DS has a wonderful personality, yes we have challenges but I we deal with them and move on.

DS is autistic, I'm 99% sure I'm NT and DH is sure he's ND. I also have ND on my side of the family. I have had 2 more children, so far DC2 is not autistic but I'm not sure he's NT. DC3 is only 11 months but developing typically at the moment. I conceived DC2 before I knew DS was autistic and DC3 was a surprise, but I was worried throughout both of their pregnancies

If my third had been first I don't think I would have had the others all of mine are ND to a degree number 1 adhd but she is fine out in the world working and living independently number 2 autistic but undiagnosed because although it is recognised he is autistic they won't put it in writing he is still in mainstream school and coping for the most part number three I've had to quit work for their dad has fucked off its just me last woman standing

I have ASD (Aspergers) and a younger sibling (I wasn't diagnosed at the time). They have traits but wouldn't meet the diagnosis threshold. They are amazing and on a practical level have helped me with things I can't do due to ASD (eg accompany me to events so I can go, talk to people on my behalf, help with executive function).

But, I'm now married and a big part of not having kids was worrying about having a kid who has profound autism. Whilst I communicate better with others with autism I know that my own ASD would stop me providing the level of care a child would need (frankly even a NT child would be difficult; the ideal would be one exactly like me but that's not guaranteed 😂). So if you have borderline ND issues yourself I would think really hard before potentially adding another ND child into the mix.

I decided not to go for a 2nd as dd 2.9 is asd. Im now too old for another but if I knew what I know now I'd have a 2nd.
.I had dds hair analysed for minerals, she is high lead and aluminium, low zinc and magnesium.

I am very high copper high lead low zinc.

I fear that i gave dd her metals and so atm I am chelating my own.

If the toxins drop , I would've had another.