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?

@secular39 @lolil Parking the possibility of having another DC for a moment. I cannot live my life preempting what DS might be like in 5, 10, 15 years time and what might happen. It wouldn't be fair on him, or me, to live life like that. The best I can do is educate myself on autism, which I am doing. I can be the best mum possible by listening, understanding and boosting his self esteem in the present, and think about what I could do in the future should anything crop up - for instance, the home schooling, private school, after school activities that interest him, making connections within the ASD community, private SaLT and OT which I am prepared to fund myself because he isn't considered a high enough need to qualify for it on the NHS.

My best friend, up until a couple of years ago, was perfectly NT, able, a mother herself. She developed a brain tumour, and as a result of the surgery and treatments, is now severely mentally disabled, no longer has custody of her son, can no longer work. Needs 24/7 care. Life has taught me that, sometimes, it just happens and you cannot control or preempt it.

I agree with that but in numerous posts you have stated that you are worried about having a second child with severe ASD considering that your child is has relatively mild ASD.

If you feel like that (what you written post). Then take the gamble and have another child. Life has no guarantees anyway.

I wasn't saying that you shouldn't have a second child because your DS ASD may be unmanageable when he is older. Putting it bluntly. But I felt you were undermining children with low functioning ASD (I hate that term but there you go) in comparison to your high functioning ASD child- you probably wasn't but that's how it sounded. It was more of a wake up call that there is no guarantee that your high functioning child will remain high functioning.

There's 22 months between mine. It was at DS's pre birth HV check that DD's autism was picked up, she would have been 12 months.

Her autism is fairly severe but there wasn't much I could do about child number 2. DS arrived and lo behold he also is autistic. Clashing needs in lots of ways.

Somehow it just works and we manage. I certainly wouldn't have more considering their needs but I absolutely don't think DS wasn't a good idea, they adore each other. In lots of ways they clearly 'get'each other and they seem to understand that they get each other. Fiercely protective of each other in what is quite a scary world for them both.

Also consider that you may be signing your unborn child up to a support role/caring role, possibly for a lifetime, long after you and your husband have died.

@galaxyqueen I was absolutely not meaning to undermine 'low functioning' children, in fact, several posts on here, particularly ones suggesting a sibling with ASD is a burden, have made me feel deeply uncomfortable.

All I was after was some advice from people who have had a child with ASD, then gone on to have another child with a different man, and what the outcomes were.

Similar situation here

I cannot live my life preempting what DS might be like in 5, 10, 15 years time and what might happen

No but you have to be realistic about the fact that your DS will change.

@lolil Yes. Just like any 7 year old, won't be 7 forever. Of course his ASD traits could worsen, he could develop co-morbidities like anxiety etc. His ASD traits could also improve with the correct support and guidance. There is no telling what could happen in the future.

from a point I would say can you handle another child if next one turned out to have asd down the line

Just have another. Seriously it's very unlikely that you'll have a severely autistic child. Statistically it's unlikely as the father is different this time.

My life has been really tough with autism but on balance I'm glad I'm here! I live completely independently on my own, own a house, full time job, on various exec committees for one of my interests and a local councillor. Chances are your son might grow up to be like me. My anxiety is unbearable at times but I was diagnosed late and knowing sooner would've taken far less toll on me and would probably mean that I was coping even better now.

Good, I hope by 'deeply uncomfortable' you mean ' starting to think about'!

I am the eldest so it was not my parents deliberate decision to create a lifetime carer in me for after they were gone, but if I was younger I'd be pissed off.

Sure, you don't have to do it, but that's hard as well - to walk away.

My siblings have aspergers (so, high functioning autism, like your son). They will always need help and support. In some ways it's difficult because their needs are not immediately obvious to local authorities. I manage their finances, their pip and esa claims, their health appointments, their police interviews (one usually as victim of crime, one as either victim or aggressor), their housing, help them when abusive relationships get too much, evict the drug addicts they allowed to move in. It's an endless joy.

I have three autistic siblings with varying levels of support needs. They are not "burdens".

mine are.

They are my unasked for burden.

We get on well, but their needs dominate my life. I can't move away, I spend huge amounts of time helping one or the other to live independently, they have regular mental health crises. Holding down a full time job plus my own family is really knackering.

How have you managed to avoid that, after your parents died - genuine question, would love to know the answer!

I feel sorry for the people that feel as though their siblings affect their lives so much they see them as burdens. We have special needs in our wider, extended family (though not ASD), varying mental health conditions (some so much they qualify for PIP), grandparents who have had dementia for 10+ years who were cared for in the home, not put into care. As a family, we all pitch in together to support the individual as and when they needed it, some are long term supported by various members. We never regarded that person as a burden and never would.

Lucky you. As long as you are aware that once you are gone that caring role devolves down then that is your choice (not your unborn child's choice of course). For me, I don't have cousins who would step in to help (the older generation are, by default, not going to be there, or will have health needs of their own).

Funny you mention pip. I was thinking about this thread this morning. I have huge anxiety around both pip claims. Obviously they can't make their own, so that's my responsibility. I have a lot of anxiety around it. It's started building now as the next renewal is in a year. Every time, we go through it from beginning to end - right through to tribunal. It's genuinely really awful for me. I find the forms very upsetting. It's upsetting having to speak in front of them about the care needs they are oblivious to. It's hurtful for them. I have to gather all the medical evidence - one refuses to see a GP anyway. Get the most recent police case numbers together. It's just a very upsetting process. Which I have to do fairly regularly and then spend 12 months worrying about. The constant worry about everything actually - their future, their finances, their safety - is very stressful.

Sibling role is a lot.

My siblings are not affected/ burdened by me!!!!

Anyone having a second child is risking creating a burden for the child they already have. Likewise any first child can become a burden for the second child. I guess the only solution to avoid all risk is that everyone has at most one child.

The way this thread is going, no-one should have any children at all, just in case. And we can all become a burden on the state instead and then die out. That'd solve the problem.

Tell me about it!

It's true. In this case though, the op knows their first child has a disability. I'm not actually saying 'dont do it' but do reflect and mitigate and think first. How will you avoid burdening the younger siblings.

Obviously, my siblings actually have no clue whatsoever about the stress it brings me.

@Prol he sounds like most 7 yr olds tbh. And I say that as someone with a severely autistic sister, autistic brother and father.

That's a shocking thing to say.

My eldest is autistic. My other 3 - 2 are quirky but manage life fine, the other is NT.

Yes my other children have been affected by having a disabled brother.

Because their brother is disabled....They understand that not everyone's needs are the same and that fair doesn't always mean equal. They understand that the expectations are different for each of them based on their skills and qualities and that they are each expected to try hard in their own way. They know that we have no less joy in eldest child joining us on a day trip because he feels up to it and interested than we feel when number 3 gets a grade 9 in her maths GCSE a year early, or number 2 gets a C in his sociology mock A level exam after finding it so very difficult. They know that what comes easy to some people comes hard to others. They know that their brother won't buy them birthday gifts because it doesn't occur to him to do so, but they buy him gifts anyway when it's his birthday. They know that him writing "happy birthday from F" in their cards is just as meaningful as a personalized message from me or their dad. They know F will probably live in our house until we die, and they probably will not, and that isn't because he's the favourite or spoiled but because he doesn't have skills for independent living, though he is in many ways academically brilliant.

Not every autistic child is gentle and professorial like my F. Of course not. But neither is every autistic child (or for that matter, a child with another disability) a burden who ruins the life of their siblings as you imply.

How dare you dismiss people's value so callously.

You'll notice, op, that siblings who dare to speak about any of the downsides, or, yes, burdens, are pretty shunned and shouted at. We should all be the amazing self-sacrificing ones who learn so much about what matters in life and are endlessly giving.
Ironically of course, we mostly actually are, but there is no space allowed for us to be anything but that anyway. The grooming starts from birth.

I've had a lot of counselling in order to access my own emotional needs and wants because, basically, there was no room for them. A lot of siblings end up in 'rescuer' or 'caregiver' mode where they endlessly self-sacrifice and can end up in quite nastily exploitative relationships because of it. We are certainly not allowed to complain. Anonymous online space is very valuable for that.

@DrRuthGalloway I don't think anyone is saying that every autistic person is a burden. But there have been quite a few posts implying that none are, simply because their own child/sibling isn't.

The person upthread who is clearly having to be responsible for every detail of her siblings lives, to the extent of not being able to fully live her own, is clearly burdened. It doesn't mean that she doesn't love her siblings, but it's a huge responsibility that she will presumably have until she dies. And it's unfair not to recognise that she is far from alone in carrying that responsibly. And although burden might seen a harsh word, by the dictionary definition, that's what it is.

... Also people's situations are different. If you have a large, warm, local extended family, then your responsibility might not seem so great. If there is no-one else around to support emotionally or practically, it will be way more of a burden.