ASD DH & DC- worrying about new baby

amother

OP ↓

Wed, Jan 01 2025, 1:45 am

Hopefully worrying in vein... But can't let go of worry cuz it's oh so hard and painful to deal with... Is this what everyone married to ASD husband goes through with each new baby from birth until their full personality shows? If you have a child with HF ASD , what were early red flags? And at what age?

amother

NeonPink

Wed, Jan 01 2025, 1:48 am

amother OP wrote:

It's not only husbands with ASD . Even just running in the family. So I would worry anyway but that's me.

And I would daven.

amother

Magenta ↓

Yesterday at 4:19 pm

Yup, that's me. I am on long term BC because I cannot manage any more HFA children (I have a few) with my HFA husband. If there was a way to know that the next child would be NT I would have more in a heartbeat but there isnt and I can't manage any more or the anxiety around all of it.

amother

Melon ↓

Yesterday at 4:25 pm

Definitely runs in dhs family and I have one child who definitely seems HFASD but too young for a diagnosis, another who is pretty high strung but seems neurotypical. I have accepted that there is a lot of things I can control and this is one of the ones that I absolutely cannot...

I definitely did notice the signs with this child from pretty much day 1 though. The things that showed up from that early present as signs of an HSP (highly sensitive person) and there's a lot of overlap with that and HFASD, so the more I educated myself on how to help their nervous system the more it helped me be their parent and help them. It's still a journey for sure but it's helped us do so much early intervention (both the official kind and things we did ourselves at home) that will help regardless of the eventual diagnosis or not. So I think educating yourself is one really important step and then davening and leaving the rest up to Hashem is the other.

Besides for that, just remind yourself that ultimately a label is just that, a label. It doesn't change the behaviors that you will be dealing with and it doesn't change your love for your child. In fact it doesn't actually impact anything about what your child will grow up to be (bear with me here!). It's just a way of understanding the way their brain processes things and learning about that can help you help them navigate the world. As the saying goes, if you've met one person with ASD, you've met...one person with ASD.

Hope this helps.

amother

↑ Melon

Yesterday at 4:27 pm

amother Magenta wrote:

Good point I am also on bc for longer than I expected to be, but I am coming to terms with the reality of what having another will look as I do have a large age gap atm and want another in the next few months/years. But op has a new baby so not sure how helpful that will be for her.

amother

Sand ↓

Yesterday at 6:58 pm

first of all, if your husband and child has asd you can test for the gene and if they can pick it up you can do ivf with pgd to have a normal child. you can make appt with geneticist to run the tests for future pregnancies.

when it came to my second child with asd I noticed immediately in the hospital that my child had sensory issues- didn't want to nurse or cuddle. body kept on getting rigid,
baby did not look at me while nursing....then did not track object with eyes...

I'm going to second the posted who said about delaying vaccinations- wait until your child is 100% clear of any Nuerological issues before vaccinating.( as reccomened to me by CHOP Nuerology)

And of course keep davening!!!

amother

↑ Amaranthus ↓

Yesterday at 7:52 pm

amother Sand wrote:

There's no one "autism gene".

Very surprised CHOP neurology told you to delay vaccines. They're known to be extremely militant about vaccines. Which doctor was that?

amother

↑ Sand ↓

Yesterday at 7:58 pm

amother Amaranthus wrote:

There's no one "autism gene".

Very surprised CHOP neurology told you to delay vaccines. They're known to be extremely militant about vaccines. Which doctor was that?

nope. there are lots of panels of testing to run. and yes some are inheritible genetic mutations. reach out to a geneticist or call bonie olam to help you through the process. bonei olam was really annoyed that noone told me about this after my first child- there is so much public lack of knowledge in this area!
not comfortable publicizing the nuerologist name publicly since it was based on my children's specific medical history, but if you are a parent of children with asd look into this piece and do your research carefully- it is a real thing for specific genetic makeups.

amother

↑ Amaranthus ↓

Yesterday at 8:08 pm

amother Sand wrote:

Only about 25% of autism cases are syndromic/genetic. Most individuals with autism have clean WES.
Very curious what gene came up for you.

amother

↑ Sand ↓

Yesterday at 8:14 pm

amother Amaranthus wrote:

Only about 25% of autism cases are syndromic/genetic. Most individuals with autism have clean WES.
Very curious what gene came up for you.

25% is enough to make it worthwhile to do the full exome/genome sequencing.
I asked a shayla before going down this route.
it's a simple bloodtest/cheek swab. if nothing comes up then you did whatever hishtadlus is possible and back to davening again for a healthy miracle child!

I am waiting for results:) but I spoke to many people who were able to identify it and had a healthy child doing ivf with pgd.

amother

↑ Amaranthus ↓

Yesterday at 8:19 pm

amother Sand wrote:

I agree it may be worth it, knowing a gene can help identify pathways which can open the doors for more targeted treatments.

You know people who did pgd for asd? Or for a syndrome that includes asd? Or just pgd in general?

amother

↑ OP ↓

Yesterday at 8:21 pm

amother Amaranthus wrote:

Hate to say this but I'd postpone vaccinating them at least until they're older and work really hard on their gut health.

I can't tell you about mx husbands vaccinations but my child with hf asd started vaccinating at two and half years. What do you mean by working hard on gut health ?

amother

↑ Sand ↓

Yesterday at 8:23 pm

amother Amaranthus wrote:

pgd for asd.
asd is a blanket statement.
their initial dx was autism but once genetic testing was done got a real name for the syndrom( not just fragileX)

I wiiiish I would have known about this when I was young after I had my first sn child.

amother

↑ Amaranthus ↓

Yesterday at 8:25 pm

amother OP wrote:

I can't tell you about mx husbands vaccinations but my child with hf asd started vaccinating at two and half years. What do you mean by working hard on gut health ?

Working on gut health means doing everything to avoid gut dysbiosis and leaky gut which is a huge contributor to the development of autism.

amother

↑ Amaranthus ↓

Yesterday at 8:26 pm

amother Sand wrote:

Not sure what you mean by "not just fragile x" . Fragile x is a legitimate syndrome that is known to cause ASD.

amother

Powderblue

Yesterday at 8:26 pm

I have 2 children, both with ASD conceived via ivf.
I would like another child but I'm worried about another ASD child.
We have embryos at the clinic, but they were not tested. Is there any way to still test them? what gene do I look for? Both me and my husband don't have asd.

amother

↑ Sand ↓

Yesterday at 8:28 pm

amother Amaranthus wrote:

Not sure what you mean by "not just fragile x" . Fragile x is a legitimate syndrome that is known to cause ASD.

I mentioned fragile x just bec fragile x has its own test and is more well-known. a Google search will bring up fragile x, but there are lots of rare mutations that us laymen don't know

amother

↑ Sand

Yesterday at 8:33 pm

amother Powderblue wrote:

yes! that's what pgd is- tests the embryos.
speak to your dr/ geneticist about it.
I'd assume they'd test your older children and if they can pinpoint the mutation will look for that in embryos.
still no guarantees but worth trying!