To have another baby when my first is autistic?

[PalominoPony]

I have one DS, who is 2, who has autism. We have been told that the chances of our next child (should we decide to have one) having autism is roughly 15-20%. (This is a general estimate, not specific to us - it is given on the basis of the number of autistic children in the UK with autistic siblings and they are not able to be more specific as doctors still don't know what causes autism.)

Do you think it would be unreasonable to have another child? Where would you draw the line? For example, for some couples, the chance of them having children with cystic fibrosis is 50%-50%, and I know I wouldn't take that chance. What is a reasonable chance to take when a child may be born with a severely disabling condition? 50%, 25%, less?

I love my DS dearly and would love another but am fully aware of the struggles he will face in life and I am wondering if it's fair to bring a child into the world when there is a significant chance of them being autistic?

Please give me your honest views!

We have two dc with asd. Dd is less severely affected but still has significant care needs. I don't regret having her, as she is lovely and brings me lots of joy and affection, but I can't pretend it hasn't been hard to have another cd with autism. I became pregnant with dd when ds was just diagnosed, but in all honestly I would probably have still done it. I had the genetic counselling but it didn't tell us much other than the stats. Now I am fully aware that my dp is autistic and I actually think now we would have been better to have tried to have another child with doner sperm. However it isn't always clear where the autism comes from and some families do have NT children too. It is a risk. I think for me the deal breaker is how important it is for you to have another child? If it will eat you up then maybe it is worth the risk.

I absolutely wouldn't. From my own experience all the children I know with autism also have autistic siblings. Their parents are just ground down.

I couldn't take the risk. I think the figure is a very conservative one.

Only you can decide but YANBU in the least. Anyone can face problems in life for a million reasons. The solid fact is they will have you as a mum and you sound brave. They have a head start already. I was 37 when I had DS2. And the 20 week scan showed a marker for Down's plus small measurements which can also be a sign. We refused the amnio and hoped. God what i would have done for that crystal ball! If I could go back I would drag my sorry, sobbing self off the kitchen floor and tell myself that my baby was going to be fine. I would get scared over those months but every time I would tell myself that whatever happened I would make it ok. And I would tell myself if I could pick a family for DS1 it would be the one that just goes for it, takes a risk and makes the best of whatever they have. Seeing my DSs together is one of my greatest blessings and I wish the same for you if that's what you decide to do.

My older son is autistic (fairly severely, on high rate DLA at a special needs school) and my younger son is on the path to a diagnosis.

When my younger one was born I wonder what the hell I had done. My older one coped so badly. I had severe post natal depression and everything was very hard. I was constantly worried that my older son would harm the baby and everything was miserable.

When the little one started to crawl it was like my older son saw him as a person for the first time. I have a video of him laying on his playmat with him saying 'hello baby' and laughing.

Now they are nearly 5 and just turned 2 and they very clearly love each other. There are still difficult times, my younger one is very hard at the moment and I still have to be careful about leaving them alone together.

However I am used to dealing with both of them and have found ways to manage it. The good times are more significant than the bad times, my little one worships my older one and is more confident when he is around. My older one finds the little one so funny which is really cute.

I would say go for it if you want a second child.

I think the conversation should be around if you feel your family is complete, rather than 'what ifs'. I have one child with ASD but I was always only going to have one child. Others I know had always planned for 2 or more DCs and they certainly weren't going to let autism take that away from them.

The other thing is, with a 2 yo and being in the eye of the storm of a recent diagnosis - you are basically in the worst place you will ever be. You will come to terms with the dx. Your child will continue to develop (albeit at a different rate from his peers). You will come to terms with the new normal - so you kind of have to decide based on what the future looks like, rather than the now.

My elder sister is very autistic. Parents probably had no idea, nobody talked about it as much in the 1970s.

Two years later they had me. I am very neurotypical. I am glad I exist. Therefore, yes please do have another baby.

Even if you have two autistic childen, you wil still love them both.

Thanks everyone for your replies - definitely food for thought and some really interesting/nice/kind sentiments so thank you!

For those who have asked, we don't think there is any history of autism in our family. My father/grandfather and grandfather's brother have some almost savant traits (their mathematical ability is very unusual - "Rainman"-like if you will) and perhaps have some of the narrow focus type behaviour - but equally the most social, gregarious people you could meet so I would not say autism.

Actually I worry I caused DS's autism by being incredibly stressed during my pregnancy (working in a very stressful job in the City), not giving up drinking (not drinking much but maybe one or two glasses of wine a week), drinking caffeine, Diet Coke, etc. I know this is probably irrational and pointless thinking though - no one knows what causes autism. I'd like the chance to "do" a pregnancy perfectly though, following all the guidelines to the letter.

I'm sure whatever you did in pregnancy didn't cause your dc s autism. You must try not to think that way

Don't do that OP. It's not helpful. Diet coke and a glass of wine once a week doesn't cause autism. And if you go into ttc with that thinking, then you are possibly setting yourself up for a lot of stress and heartache. Nothing you do can guarantee a 'perfect' pg.

It's a really difficult decision. But it depends on how you feel you would cope if your second child did have autism and how much care your first DC needs. Why not ask to see one of those genetic counsellers. I saw a programme about them a while ago. They seem to be attached to large hospitals.

Like blue cheque I have an older sibling with very severe autism and I'm NT. When growing up I met with other children in my town who also had severely autistic siblings and they were all NT too. It does run in our family as I also have a cousin and second cousin with autism but there are no siblings in the family who both have it.

OP i always wondered if I had caused ds1s autism by dodgy lax pregnancy behaviour but I was perfectly behaved with ds2s pregnancy and hes autistic too.
You cant blame yourself x

op I don't drink alcohol or caffeine and rarely get bothered by stress please don't trouble yourself with those things.

I have several children who have autism ranging in ages from 15 to 21 all attend (or attended) special schools all considered to be severly disabled.

I currently have a almost 3yo awaiting a possible dx and a just over 1yo whose now on the waiting list.

The only things that should factor into the decision is complete family or not and ability to cope or not.

As an aside if you are intending on using state schools or specialist provision many LA's do there utmost to ignore private dx's it may be wise to go down the NHS route (unless they don't these days)

My oldest child is a bit 'odd'. When she was eighteen months old people started talking about autism and it's still brought up now and then (she's five). She had a severe speech delay, lots of tricky behavioural stuff, obsessive behaviours, that sort of thing. Anyway, we had DS when she was eighteen months and he has been the best thing ever for her. DS is NT according to all of DD's therapists. He has a speech delay but other than that he was an early milestone hitter, sociable and fairly flexible. Our third DC was an accident but when considering whether or not to continue we never worried about if she might be like DD. She's only four months but actually she shares a lot of DD1's quirks. DS was a very standard baby, but the DDs are peculiarly independent, frantically sociable, obsessed with lights and Bach babies.

FWIW I worried that I broke DD1 somehow, I had an incredibly stressful pregnancy (family members died, another one went to prison and we bought and sold a house) but I did this one all 'right' and I don't think it's made much of a difference.

My DS has AS, my DD is only two years younger and we hadn't realised DS had SNs when she was conceived, but starting to realise by the time she was born. DD is NT, having her was probably the best thing we could possibly have done for him, they are very close and the fact that he is young for his age puts them very much on a par with one another. Having another child around to practice his social skills on is absolutely invaluable for him as he has struggled with friendships (he's 11 now).

My ds is 15 and has aspergers with adhd. He wasnt diagnosed with As until he was 13 although we knew something really wasnt right from birth deep down although we though thats must be what babies and young toddlers were like. We wrnt on to have dd2 who turned out to be NT and im so glad we did because she helped us realise that ds really did have problems and we started the long road to diagnoses. I had 2 more children, both girls with another partner who also shows traits and we feel sure there is something going onnwith dd3 who in many ways shows similar traits to ds.

Can I point out high functioning does NOT always mean a happier life.

My DD is not low functioning and so far is happy most every minute of her life..obviously later is a worry but her life is very rewarding.

Totally hate when people say "as long as they are high functioning". People who are high functioning have to deal with their own different issues.

My DD has fairly severe non verbal autism and is rewarding and very happy. And so are we, despite being tired.

" if he's going to be high functioning and have a great life that's quite different from needing care your whole life."

These sort of statements make me very sad

Chocnomorechoc - what genetic testing?

I have a Pten gene mutation which is actually a "breast cancer" gene and very rare but I've read studies that suggest many autistic children have undiagnosed Pten mutations.

Therefore it worries me in falling pregnant again. Not to mention the cancer risk for any children I have.

Op is genetics an option? If your son have a recognised gene fault it could be screened for using IVF?

If you work in the City, I would assume you are pretty numerate? Does your DH have a similar job, or engineering or computing?
Autism can be very different for different individuals, it has historically been under diagnosed in girls and also "higher functioning" individuals. Do you also have any history of depression in your family? Being a square peg in a round holed world can lead to feelings that have often been diagnosed as depression.
The 15-20 percent figure includes HFA which might be similar to the quirky members of your family.

However you don't have to have another child, it is your decision. What can you cope with emotionally? Financially two children cost more than 1 and both may require extra resources as they get older.

BTW no one would have even thought my DC with Aspergers was on the spectrum at 2, and it would have been difficult for anyone to suspect at 5 (although it would have been useful if we'd known). Even now you might just think she was quirky or had a short temper if you didn't know.

I have 5DC our 3rd born DS now 13 is autistic,his sister 4th born DD 11 is not,our 5th born DD 7 is also autistic.Our two oldest son's 18 and 16 are not autistic.

We wouldn't give back our youngest for the world she is amazing and she has an amazing bond with all of her brothers and her sister and she and our autistic son really get each other.It's lovely to watch them playing together.

You know what your own life is like at the moment,what you need to think about is do you think you could cope okay if you did have another child that was autistic.It never even entered into it for us that are youngest would be autistic.I honestly didn't know there would be a higher chance,no one told us.But I still don' think it would have changed my mind even if they had.

Following on from a post way upthread with this link www.medicalnewstoday.com/articles/288574.php

I would also say, don't ignore environmental factors. Factors such as toxins in pregnancy can cause gene mutations as the baby develops so any blanket risk factor given to you by your doctor should be scrutinised carefully.

It could be a food additive or a medication.

Many everyday medications have never been tested for their impact on babies. They experiment on rats and if certain traits are observed in the rats then it is deemed a risk. It's not the most effective way of doing it but for various reasons it is the established method. I suspect a huge number of tests don't show evidence of risk when there may be one.

I would urge anyone with questions about risk to read up about gene mutation caused by environmental effects.

Should have mentioned I also became disabled and seriously ill with in a year of having our 5TH DC but life's still pretty good.So it can be done Op and you can still have a pretty good quality of life.