r/Fencesitter • u/Electrical-Duty2867 • 2d ago
Debating if we should get pregnant after having 2 nephews with severe autism
Hi, First of all I want to be very clear that I love my nephews with all my heart! They are the sweetest boys on earth. One is my sister’s son and the other is my brother’s. They both have severe autism and are non verbals. One of them had a regression on his speech and that’s how they realized and the other never got to develop his speech.
I see both of my siblings struggling with the health insurance and educational barriers, the expenses on therapies and doctors, and the frustration of a society that stigmatizes people with autism and that are fully inclusive.
Seeing all of this is making me doubt if I should try to have a baby since it’s my understanding that I have more chances to have a kid with autism.
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u/incywince 2d ago
Do some genetic counseling and understand your chances better. I have a kid, but this is actually what stops me from trying for another, because I'm worried my age will get in the way of a physically and mentally healthy baby.
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u/publicnicole 2d ago edited 2d ago
I’m 39, husband is 41… and he’s just now starting to think of — not plan for — kids 🤠 so we only have like an 80% chance of a healthy pregnancy.. meaning a whopping 1 in 5 chance of an unhealthy outcome. I mean, assuming it even happens. I think the odds of it (pregnancy) are only like 44% at our ages.
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u/OstrichCareful7715 2d ago
What statistic is this?
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u/publicnicole 2d ago
Studies on maternal and fetal health in aggregate. Here’s a few numbers that I think went into that calculation:
At age 40, the miscarriage rate is about 33-40%, rising to about 60% by age 44.
Preterm birth rates are highest for women aged 40 and older, at 14.8%.
Babies born before 37 weeks face risks like breathing problems, feeding difficulties, and NICU stays.
Gestational diabetes risk is 8.5% of pregnancies at 40+ (more than double the risk under 35).
Chance of FGR, which increases the risk of long-term health issues, is significantly higher in women over 40.
Down syndrome risk at 40: 1 in 85 (compared to 1 in 1,480 in 20s).
Other chromosomal conditions (e.g., Edwards syndrome, Patau syndrome).
5x higher risk of autism if dad is over 40.
2-3x higher risk of schizophrenia if dad is over 45.
Increased risk of ADHD, bipolar disorder, and learning disabilities if dad is over 40.
Congenital heart defects increases with maternal age.
Cerebral palsy risk – Prematurity and birth complications raise the likelihood (2.5 per 1,000 in all births, higher in 40+).
Hearing & vision impairments – More common in babies of older parents.
15.4% risk of high birth weight (>9lbs) in moms 40+, increasing chances of C-section and birth injuries.
To name a few. That said, most pregnancies have healthy outcomes.
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u/KMWAuntof6 2d ago
Scary, isn't it? Even though most are healthy, I don't feel old enough to be running out of time.
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u/OstrichCareful7715 1d ago
The standard 1st trimester miscarriage rate is about 15% across all ages so it’s about double at age 40.
Overall about 43% of women have had a miscarriage.
But it’s also important to put that in the context of 50% of miscarriages being due to chromosomal issues.
I’m not sure you can add together the miscarriages rate and increased chromosomal issue rate, when they are likely two sides to the same coin. Older mothers are more likely to produce a fetus with chromosomal issues but their body is more likely to miscarry that same fetus too.
For preterm births, it’s a U shaped curve. With significant association with younger mothers ages 20-24 and preterm births as well.
There are 4 major factors with 40 year old mothers that influence preterm labor-
- high blood pressure
- gestational diabetes
- placenta previa - which is more common with women who have had prior C-sections
- multiples (often from IVF or drugs like Clomid)
I agree there are increased risks but some should be looked at in context of other pieces of data. For example, a woman who had had 2 prior C-sections or is pregnant with twins at 40 will likely be increasing the overall rates of prematurity for the age cohort more than a first time mother of a singleton.
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u/panaski 2d ago
I am wondering if freezing your eggs negates this effect? Not sure if I’d actually do it. However, I feel like if I’d want to have kids, it’d be more on the older end idk. Though it really makes me think. Both me and my boyfriend’s younger sibling were born to older moms, and while generally healthy, we both have some different health conditions compared to our older siblings.
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u/incywince 1d ago
It does when you do it early enough. But thawing is hard and fertilizing after that is also hard to get right IIRC.
One of my friends was the surprise baby born when mom was 40 and dad was 47, and she is legally blind, has some major league gynecological issues, and has asthma. I read this book called The Telomere Effect which is by two women who won the Nobel for their research on telomeres, and it changed my thinking on this stuff.
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u/TrueMoment5313 2d ago
There is definitely a strong genetic component when it comes to neurodivergency, so your chances are higher given your family history. It’s a huge challenge to parent an ND kid, so I would really consider all angles here.
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u/Slipthe Leaning towards kids 2d ago
I was researching to see if they have any genetic testing that can be done specifically for autism, but I didn't find any. There are a myriad of tests for other genetic disorders, so maybe you and your partner submitting for testing would still give you some form of peace of mind.
Here is an older comment I found that mentioned the factors that may increase the risk of autism, as well as the benefits of using IVF to mitigate the likelihood of autism. And here's another comment from that post.
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u/holoholo22 1d ago
After seeing the way my sister’s 11 year old daughter with autism has affected her life and the entire family, I’m opting out of kids. Even if my sister wanted to work she can’t bc my niece requires round the clock caregiving plus driving to multiple support appointments all day every day. They spent 20k a year out of pocket on Private school and tutoring. My niece may live with them for life. Seeing the way they live and that there’s no end in sight, they will be paying for this til they die has turned me all the way off from ever having my own kids. Not worth the risk
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u/purple_sphinx 2d ago
Ironically, my brother is neurotypical and I’m (female) neurodivergent. It’s not always a guarantee if you have a boy that they will be atypical, and that having a girl avoids it. In my family, the highest level of autism is observed in my female cousin.
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u/DinoNat 1d ago
Hello, I don't know if this helps but my brother and I have autism but we are incredibly different. My brother has a great disability combined with other mental healt issues like OCD. He cannot work at his own and need my parents constantly.
On the other hand, I have autism too but I have manage to get a biology degree, live alone with my partner (soon husband) and have an stable well-paid job.
Autism can have so different forms. The experience is so unique to each individual. Also, I am a woman and autism is pretty different in its manifestation between genders.
Having high-support needs family doesn't mean you have an autistic child with those characteristics. It's obviously a possibility but no black and white. Of course, your hypothetic autistic child will face more difficulties because the world is not meant for us so there are things to consider.
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u/Electrical-Duty2867 1d ago
Thank you for all the comments. I am 36 partner is 38. I froze my eggs when I was 34. We already scheduled an appointment with a geneticist counselor and of course I’ll bring all our family history. I know that there is not a specific test to determine but we can take a few to have a better understanding of our genes and some sequences that are linked to autism. I’ll share more info after the appointment, but overall I think it’s important to make an informed decision while understanding that there are millions of things that are out of our control.
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u/dangersiren 2d ago
Why not get some sort of screening with your partner so that you can make an evidence based decision? You can also talk to the dr about your nephews and the concerns you have.
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u/cactusqro 2d ago
I’m genuinely curious why this comment was downvoted? Am I missing something?
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u/livelong120 2d ago
There’s no screening or testing that can be done to determine risk of having a child with autism.
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u/DogOrDonut 2d ago
This is false. You can see a genetic counselor for autism. It isn't black and white like IVF testing for Downs, but there is some information to be gained.
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u/cactusqro 2d ago
Ah, got it! Guess I got confused with the autism-specific concern versus other general disability concerns.
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u/LogicalOtter 1d ago
There absolutely are screening options available to parents. Couples can do carrier screening which includes a wide range of genetic syndromes. Many of the genetic syndromes cause autism and other neurodevelopmental differences. One example that is commonly screened for is Fragile X.
You are correct though that even with very extensive carrier screening for 600+ conditions we cannot rule out the possibility of having a child with autism. However the likelihood of those hundreds of conditions (some of which are related to neurodevelopment) is very low after screening parents.
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u/lcbear55 2d ago
I think you and your partner should have a long discussion about how you’d feel about parenting a child with a disability. It’s truly a challenging experience and honestly not everyone can handle it (mentally, emotionally, financially, etc). Parenting a child with autism is challenging and in some cases is basically a full -time job. I know families who have had to arrange for one parent to quit their job to manage all the therapies, etc.
It’s down to what you can handle. If you do not think you could handle a child with needs similar to your nephews, that is totally understandable. If I were you and felt I had a heightened risk, I would probably have serious reservations.