Being an Autistic person and pregnant

[Annoymous3659]

Hi all,

I recently got a late diagnosis for autism. This was triggered by a pregnancy last year which unfortunately did not end in a birth. It was an incredibly hard pregnancy due to sensory issues and issues around introception. I really struggled and my mental health declined significantly. At the time I did not know I was autistic

I would really welcome other women who are autistic to share their experiences of pregnancy

I'm sorry for your loss.

I went through a few pregnancies before I knew I was probably autistic. I don't think it was any different than a non-autistic woman going through those things, other than maybe some less conventional choices for birth. I know that mightn't be very helpful, but that's my experience anyway.

Thank you @weirdthread for sharing your experience

Hi, I was also diagnosed late, 5 years ago aged 35. I had my first child at 24 and my second at 29. During both those pregnancies I was very much in the dark and in full masking mode. I’d received various mental health diagnosis and had some treatment which hadn’t helped, but was in a good place when I fell pregnant that second time.

My mental health deteriorated during that pregnancy however. And during the next two years. It was basically a breakdown; I think I reached my masking limit. It was a year or two before I saw something about how autistic women can present, and that kicked off my diagnosis process.

Now I “live as an autistic person” my mental health is far more solid. I have something I refer to as the ladder of burn out, and it’s only if I reach a super low rung regarding all my triggers (so sensory, being functionally overwhelmed, social interaction) that I suffer from my symptoms.

Knowing I’m autistic has meant I’m more aware, and can seem way more autistic, so I am curious as to how this pregnancy will progress. As well as life with a baby as I was a co-sleeping and breastfeeding on demand parent. Which is obviously intense sensory wise.

However, I have so far been offered enormous help and support from my midwife et al team. It’s definitely out there if we need it, including people’s personal experiences to help us try and work out how we may be feeling. As I’m expecting to feel a certain amount of blindness to how I’m feeling in the moment. I might need some deciphering.
My midwife said she’d send over a link to a book an autistic lady has recently written about pregnancy and child rearing as an autistic person. I can share it when she emails me.

@EmPeEf Thank you so much for sharing all of this — it really helps to hear from someone who’s been through pregnancy without knowing they were autistic at the time. Your description of masking, burnout and the breakdown you experienced really resonates with me.

I only found out I was autistic after a very overwhelming pregnancy that sadly ended, and I’ve been trying to make sense of everything ever since.

It’s reassuring to hear how much more solid your mental health feels now that you’re living with that understanding of yourself, and that you’ve developed ways of noticing where you are on the “ladder of burnout.” I relate a lot to the sensory and functional overwhelm you mentioned, and it’s validating to know I’m not the only one who struggled so intensely.

I’m really glad you’re getting good support from your midwife this time around. It gives me hope to hear that there is help out there for autistic women in pregnancy when people actually understand our needs. I’d be really interested in the book recommendation when you get it — thank you for offering to share it.

Sending you lots of good wishes for this pregnancy and the early months with your baby. It means a lot that you took the time to write all this out.

I used to follow drkristynsommer on instagram and she had a whole list of requests printed/laminated for staff on the delivery ward. For example, I think she had preferences about lighting, sound levels, how to talk to her (clear, direct language), when not to talk to her, reminders to knock before entering... It was around 2 years ago so I don't remember it now, but it might be worth preparing something like that for your antenatal care/delivery if it helps you to articulate and communicate your needs.

As for postpartum, I can't help but I am sure there are plenty of mums on here who can give you advice!

@Annoymous3659 honestly, I always assumed medical professionals would tell me off for wanting another baby as an autistic person. But it couldn’t be further from the truth. We’re just as deserving of everyone else, and to be able to live how we need to.

My midwifery team gave me a Hospital Passport which is a form you can fill in if you require additional needs, but so you’re not always having to try and explain yourself and advocate yourself when things are most difficult. Everybody who gives you care will be able to access it. And as I can reach a non verbal stage so it’s essential for me.
It’s very much “this is how I see and understand things and what benefits me”, so for example on mine it states I prefer blunt and to the point information, and sudden changes of plan are difficult for me, but if I get the logical facts I can cope much better. No one wants to be having to explain that in an emotional state lol.

Also, I just want to add that pregnancy may be challenging, but autistic people make some of the best parents. Our capacity for empathy along with a practical and logical outlook is such a great combination. My youngest is neurodiverse and we are so extremely close because I can understand him. I’m his safe person. And like I say to my kids; if you’re ever forced to go through something challenging in life, it’s not awful luck or only terrible news. It means is you are perfectly set up to support somebody else and help them go through it as well. And I love doing that for people. When I can bare being around them of course 😆 🤣