Being autistic and pregnancy

[wombatsandadoor]

Hi,

I don’t intend to have a baby for another 3-5 years but I’d like to get all the information in advance, so I’m starting tentatively.

I’m autistic so I’m looking for other autistic people to give me their experience, how it affected their autism. I’m worried I won’t cope, so also considering surrogacy.

Thank you.

I was undiagnosed when I had my children, both times I hated the changes to my body (previous ED issues as well). However, apart from that, and the horrid PND. I look back and think it wasn’t actually that bad. Second pregnancy was a LOT smoother than my first.

I expect if I ever decide to venture down that path again (very unlikely), I’d be better and more at peace with myself.

There’s a book been released about autistic women and pregnancy, and a midwife is doing research about autistic women’s experiences of pregnancy.

I was also undiagnosed with both pregnancies. I didn't find the body changes too difficult, but the first birth was traumatic (failed induction resulting in EMCS - there were other complicating factors in my 'care', too). It took me a while to acknowledge how much it affected me and now I'm having trauma therapy for PTSD.

However, DC2 was an ELCS and the sheer control I felt over that delivery was so much better - I knew when, how and that I'd be out in 24h barring complications. I would definitely give that serious consideration in advance. Likewise how you feel about internal examinations and being touched by lots of people if you need monitoring, etc. You can refuse internals so it's good to think in advance. Also think about having someone with you all the time to advocate if you're getting overwhelmed.

The things I've struggled most with post-birth are the lack of time to myself, constantly being available to deal with kids who need physical contact, never getting to properly relax. One DC is also autistic which requires a lot of extra thinking for me. When they are upset by routine changes or sensory overload I'm dealing with it too, for both of us, but there's never enough downtime to decompress.

The various changes in routine, breastfeeding, changing needs, returning to work, trying to carve out space for myself, not having slept properly in years is now taking a significant toll on my mental health. Had I known at the point you are what I know now I'm not sure I would have made the same choices (this is no reflection on my DC who I love beyond anything) but a reflection on what this process has done to my ability to cope with the basics of life. It's almost impossible to mask now. I can't keep up. I feel overwhelmed and have more meltdowns which I have to hide from others. My relationship and my work are suffering, I feel I'm failing in all aspects of adulting.

Read around as much as you can. Look at where the uncertainties are, from my experience: conception isn't guaranteed, pregnancies don't always work out, there's no way to know what birth will be like, you don't know how your baby will feed or sleep, you don't know if they'll be autistic too (with all the sleep deprivation and support they might need), etc. Look at what mitigation you can put in for each step so you're as prepared as possible.

I'm sorry mine is a cautionary tale, maybe once I'm through therapy I'll find it easier to focus on the positives (and there are many of those, despite the way this post reads). You also have an advantage as you already have a diagnosis, you won't be trying to cope with pregnancy and motherhood and all the attendant physical, routine and sensory changes whilst not understanding what's happening and why you're struggling when others appear fine.

I think you're wise to consider this in advance and wish you luck on your journey.

I had hyperemesis gravidarum so the first half of the pregnancy was utterly brutal. The second half of the pregnancy was a breeze by comparison.

Childbirth was f*#%! ing painful and if I could go back in time I would have chosen the epidural.

But the biggest challenge of all was proving to social services that I could look after a baby.

All of my antenatal appointments went smoothly and nobody flagged up any concerns, then shortly after birth social services wanted to take my baby away. I had to attend an emergency court hearing over Zoom.

The original threshold report claimed that I had significant learning difficulties and lacked the cognitive capacity to look after a child. I had been assessed as having autism and developmental delays when I was four years old and the safeguarding midwife probably saw that on my medical records. I handed a copy of my degree certificate to my solicitors and when the court found out that I had a masters in mathematics from a prestigious university they began to question the threshold report.

The court decided that I would go to a mother and baby placement. After three months at the placement I was finally allowed to go home with my baby and I had regular visits from social services for another three months after that.

Looking after a baby was actually easier than expected. I was unsure of how I would cope with a crying baby with my auditory hypersensitivity. As it turns out DS rarely cried and if he did cry he would stop immediately if I put him over my shoulder and walked around with him. He’s now almost eight months old and he’s a playful giggly baby who is curious about everything. He’s utterly photogenic and an early talker to boot.

Also undiagnosed at the time of both pregnancies. I coped fine with pregnancy to be honest, but I was healthy throughout, didn't even have a days morning sickness.

Had some gripes about being hot and uncomfortable and smells irritating me but generally, par for the course pregnancy irritations.

For me, with hindsight, what I struggled with was the total up-ending of my life after my eldest was born. I'd expected, like everyone else I knew, that I'd have my baby and it might be tough in the newborn days but I'd adapt and life would go on. In reality what happened was I had my baby and really really struggled with the total lack of control that you have during those early months, the inability to have a routine that you can manage yourself and on top of that I had a baby (who was later diagnosed as autistic!) who never slept, always cried, needed constantly holding even for sleep, had horrendous silent reflux that meant she couldn't feed properly etc etc. She also had to have medication for an unrelated issue for her first year. Breastfeeding was a total no go, despite my best efforts. I HATED the feeling of it, it really hurt me. My baby hated it too!

I ended up basically creating a routine for us which meant we didn't leave the house for much of the first year. Now I can see now that it is true that it would be very difficult to do with everything I was dealing with but I completely isolated myself and locked us away. It was my way of coping I think.

Second time around it was much much easier because I knew what to expect. I knew how it worked. And I coped well with that. Second was a much easier baby overall anyway, though she too is also likely autistic.

Oh and also echoing what the PP said about birth. First birth was a traumatic 3 day induction forceps horror show. Second was a planned CS. I loved the second one. The control and planning element was key for me. Even though I didn't realise it at the time.

I've had three children. The pregnancies themselves were fine but I didn't enjoy feeling out of control during the births. In all of them I had to be tied to the stirrups as I couldn't do as I was told. I was twisting onto my side, drawing my knees up and closing my legs.
I wasn't allowed any pain relief due to a platelet issue I have. I would advice getting an epidural so you remain in control. I wish I could have had one.

I loved being pregnant and didn't have any problems with the physical adjustment. I had no issues or complications.

Ds1's birth was complicated as a registrar performed an unconsented to membrane sweep which was traumatic and painful. I ended up with an EMCS and ds had Strep B infection due to premature rupture of membranes.

Ds2's birth was fine because it was an elective section. The biggest problem was the woman in the next bed on the post natal ward who complained non stop about literally everything.

Looking after the babies was fine, but it was hard work not having a lot of sleep, particularly with ds2 who liked being up at night. Ds1 was a better sleeper.

The constant "mum, mum, mum" got on my nerves a bit and I'd hide from the other parents at the school gates 😄