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.

This is such a hard position to be in. In my case, I had my first DC at 38 and DH is older. The first few years were very tiring as we are older parents and by the time we were thinking about another this factored in our thinking. As far as we know my DC is NT and is developing in line with usual milestones. However we have lots of ASD in our family (my Dad and brother as well as my two nephews) and it very much factored into our thinking about having another.

Advanced parental age and the prevalence of ASD in the family meant that we decided to not risk having another. I felt that it wouldn’t be fair on existing DC to risk having a high needs child. Both DH and I have demanding but not hugely high paid jobs which meant we would have struggled if one of us would have given up work and seeing the struggle my sister has gone through with her two boys where she hasn’t worked since the children were small because of their needs it felt like the risk outweighed the benefit of having another child.

I’m still sad about it from time to time, but I have more or less made my peace with just expending all my resources on doing the best I can for my one DC.

Oh and I wanted to also say that we also don’t have any family support which also factored into our decision. Just that alone makes things hard even for a single NT child as you never get a break unlike lots of people I know who have grandparents or aunts and uncles who can help out. It really is just us all the time and it’s hard.

My parents would say no. ‘Oh in my day there was none of this….’ But in adulthood, I see that both my brother and I are ND. Cousins, and others, clearly are. Some have diagnoses now. Only one did back then.

It was funny being an (at that point) undiagnosed parent. Nursery, teachers etc. all desperate for DD to get diagnosed and then medicated. I thought she was totally ‘normal’ :D Doesn’t sleep, sensory issues, zero fear and constant risk, never stopped moving, couldn’t sit for a minute, no impulse control, all completely typical, right?

What’s interesting is that what was an issue with recognising behaviour is a massive asset now. Firstly, I can understand in a way NT people can’t. Second, I don’t judge when she just has to do something or not do something. Third, and this one is key, she doesn’t have to learn everything the hard way like I did, because I already have the strategies. If she has two safe pairs of shoes, that’s one more than she needs and yes, she can wear them all the time. If she struggles to diligently do one hour of homework a night, I’m fine with her catching the hyperfocus wave and doing 8 hours on Saturday and none for the rest of the week. Happy to explain to teachers. Happy to move that one cup out of her way that is a bit rough and gives her the heebie-jeebies. Happy to go with what she can manage on the weekend. NT daddy doesn’t get it in the same say because the same things don’t work for him.

My brother is diagnosed Autistic/ADHD, my dad had a very late diagnosis of ADHD but would have been diagnosed as autistic if that had been a thing.

My daughter and I are very similar - I suspect that if I was a child today I'd be diagnosed as well. I was in a support group for parents and was talking through some stuff and suddenly realised I very easily could have been speaking about myself when describing my daughter's challenges!

My sister has two autistic children and didn’t realise the first was before having her second. She had to give up her career as successful corporate lawyer as it was so intense bringing up her two children. They never seemed to sleep, huge behavioural issues, now both kids are young adults but will always need care and will not be able to live on their own. Having them changed her life and not necessarily for the better. Thankfully, her husband has a very good job so they’ve had a lot of money to throw at the issues like medical, behavioural support, therapy, carers etc I dread to think how much harder it would have been if they couldn’t. Personally, I wouldn’t have another. I’d concentrate on giving the best life I can to my first autistic child..

@SherbertLemons Funnily enough, I came across somebody else in a similar position to you today, and they have a possible solution, so I thought I'd mention in to you.

In this case, the DH has ASD on his side (having a few traits himself, but also some family members with a diagnosis of ASD on his father's side but not on his mother's side). The DH is close to his cousins on his mother's side(ie without ASD in the family) and they have asked one of these cousins if he would consider donating sperms to them. The cousin has agreed in principle but is discussing the situation with his own DW at the moment.

Is this something that might work for your family? The advantage is that any DC arising is that they would still be related to your DH, but should have no more risk of ASD than anyone else.

Personally, I’ve seen this firsthand with my sister. Her first child is autistic, severely and will never be in mainstream school, has needed one to one support and will probably need care for the rest of her life. They had a second child thinking what are the chances? Well, clearly not good as second child is worse! Non verbal, not able to attend normal school and had to go to a specialist autistic school and also needed one to one ABA therapist support at home as well. He is not needing to be medicated as gets violent and as he’s older and much bigger in size than my sister, she was getting hurt. So me personally, no I wouldn’t have a second as I’ve seen what could happen and I’ve seen the hardships that my sister and her husband face (thank goodness he has a very senior management well paying job so they can afford extra therapists and hands on help!)