Has anyone given birth *after* being diagnosed with Asperger's/HFA?

[penguinflippers]

I'm 34 and have a formal diagnosis of high-functioning autism/Asperger's.

My life seems 'normal' from the outside - full time job, married, house, good friends. Only a handful of people know about my diagnosis and how much I've struggled through to get to this normal looking life.

DH and I would like to have a child but I am absolutely terrified of my diagnosis not being taken seriously when pregnant/discussing birth choices, as I seem to be coping so well with life and I don't fit the autism stereotype.

I'm wondering if there's anyone out there who already had a formal ASD diagnosis before they got pregnant, and whether midwives/consultants actually took it into account, especially with regards to birth choices? If you expressed anxiety about labour/vaginal birth, did they take your concerns seriously?

There is barely any information anywhere aimed at pregnant women who are autistic and I would be so grateful if anyone could share their experiences just so I could get some idea of what to expect. Thanks so much.

Hopeful bump?

I honestly have no idea where to go for advice on this - there is almost nothing written online about it. Feel like I would be massively wasting my GP's time by telling her about my fears relating to a hypothetical pregnancy

I was diagnosed between DC2 and DC3.

I had PTSD from DC1s birth so DC2s birth plan was basically to minimise further trauma to me and deliver her safely.

5 years gap and one ASD/ADHD diagnosis later, DC3 was a surprise baby. They didn’t consider it in my birth plan for DC3 due to already considering the PTSD, it kind of fell under the same umbrella.

Most women don’t present like the stereotype and my Consultant wasn’t at all surprised when he saw my diagnosis when I was pregnant with DC3.

This website might be interesting for you to read OP, she is a midwife who has a diagnosis of Autism.

www.positivebirthmovement.org/the-camouflage-women/

I'm autistic and have never had anyone question my ability to make decisions regarding my health care. I have 3 DC and it's literally never even been so much as mentioned in my ante natal care.

Thank you so much for all your replies! @HigherFurtherFasterBaby I'm so sorry you had such a traumatic first birth, I hope your second and third were nothing like that.

@123bananas that is a fantastic article, thank you!

@puppyconfetti that's good to know!

I think because there's so little information anywhere my mind is filling in the blanks with the worst possible scenarios because I don't know what else to expect.

Following with interest, also autistic and terrified of getting pregnant because I really do not think I can cope with the unpredictability of labour and birth. I do want children but think the uncontrollableness of that scenario will give me a hard time with autism, whilst also having to deal with the pain.

I want to be confident that my fears are listened to before I get pregnant. Also worried that I have no idea who I will get on the day, e.g. midwives; what if they don’t understand?

I received my diagnosis 10 years ago, and am having my first child any day now. I started a thread on the pregnancy board a few months ago asking about other autistic women's experiences and got some fantastic advise, The most valuable of which has been to write a brief explanation of my autism and how I might appear, as well as what midwives can do to help. This is stapled into my maternity notes in a couple of different places. So far most of the midwives I have encountered have been great, they have taken the time to read my autism note and have asked questions and commented on how helpful it is. I have had one midwife, unfortunately the one I have seen most frequently, who is utterly dismissive of me. But you can choose to not see a specific midwife. They are there to offer you reassurance as well as looking after your pregnancy. You are perfectly within your rights to not see anyone who makes you uncomfortable. I have also been following a hypnobirthing course, which has been incredibly helpful for preparing mentally for the unpredictability of birth. I actually feel relaxed and prepared for the birth, which I would not have thought possible a year ago. It also helps that my husband understands my autism and how I react to stressful situations very well. He has also done the hypnobirthing course, which he found very useful, and have discussed in immense detail what he will be doing during the birth to help me.

Autism is a lifelong difference (it's not always a disability so I don't use that word, dd hates it) therefore it's irrelevant whether you are diagnosed before or after really. Everyone experiences childbirth a little differently and midwives are trained to look after you however is appropriate to you. There's good information online

Thanks so much for your replies everyone - @MollyChandler I just read through your thread, it's really useful, thank you! What you mentioned in your posts about the midwife saying that you're just being 'controlling' - this is exactly the sort of thing I'm scared of. If she understood anything about autism at all she'd understand where you're coming from. Hope your birth goes smoothly, it sounds like you're in a really positive frame of mind about it now.

@user1471548941 I feel exactly the same. Not knowing which midwife I'd get on the day would stress me out massively - as well as having to see lots of different midwives and explain the autism to every one and probably get all the 'you don't look autistic' nonsense every time.

@stucknoue the reason that I made the distinction is that I need to know whether having the diagnosis actually makes a difference to whether medical staff take your concerns about unpredictability/sensory stresses/sensitivity to pain seriously - if a woman without a diagnosis raised those concerns then she would most likely be told that she was being overly anxious/dramatic. But if you raise those concerns when you've got an ASD diagnosis then midwives/consultants should, in theory, realise that your concerns are valid and allow you to give birth in the way which is going to be least traumatic to you - rather than just sending you for a bit of counselling or telling you to relax.

OP - no they weren’t, I had a fabulous Consultant who had my back 100% on all my decisions. Plus... For some bizarre reason 2 and 3 were really fast labours - 94 mins and 40 mins

You can write down your birth preferences and your DH can have a copy to give on the day if they don't read your notes. Believe me it is not going to matter which midwife you do or don't get on the day! You will not be paying any attention to them, you will be in labour. You will not be wanting to or capable of explaining anything. Your DH bears the responsibility of communicating on your behalf, he knows your preferences and will be your support throughout. I'd invest your efforts into DH and making sure he is prepared with the knowledge of intervention pathways, pain relief options etc and confident to advocate for you. A good antenatal course should prepare you both e.g. nct.

Could you look into having a doula with you? That way it'd be someone you know, and their role is to advocate for you so they would be able to explain about your autism on your behalf.

In terms of pain and unpredictability, is your thinking that you'd prefer an elective c-section? If so, there's some good threads on MN about requesting one.

I was diagnosed a few years before having DS. My midwife then was very dismissive of it and basically said it didn't matter - like you I come across fine until I'm not! It did affect my labour and birth (induction) as I wasn't able to communicate my needs, and DH was at home when I went properly into labour as it was the middle of the night. This was despite me trying to make it clear on my notes and birth plan that there could be an issue.

This time my midwife is awesome and has autistic family members so 'gets' it a lot more. She said she will help me make it clear on notes/birth plan and will also speak to the team on the ward before I'm likely to go in to make sure they are aware. I feel much more confident about it all this time!

Thanks so much for sharing your experiences everyone, I really appreciate it

@HigherFurtherFasterBaby your consultant sounds brilliant! Glad to hear you had much better births the second and third times.

@Navy123 it's appalling that you weren't listened to with your first birth, I'm so sorry. Your new midwife sounds amazing though! I hope you have a really positive experience this time.

@RednaxelasPony I hadn't actually realised how much responsibility DH would have during labour! Although he'd definitely be willing to advocate for me, I do worry that if things started going wrong he would panic.

Although I don't think we could afford a doula @Dreamingofsunshine, one of my best friends is a very calm, encouraging person generally and I always think she'd make a good doula - so if I did go for a natural birth I'm sure she would be willing to be my birth partner, I think DH would probably be quite relieved to not have the responsibility!
But as you've guessed - I do feel that an elective c-section would be the best option, and this is why I'm so afraid of not being taken seriously. I'm really concerned they'll just think I'm trying to take 'the easy option'.

I just don't know how to describe the effect that even moderate pain has on me - it's like it fries my brain and I can't even think, let alone speak or move. Because of this I think it's very unlikely that I would be able to follow the midwife's instructions in labour, which would clearly be hugely dangerous to both me and the baby - not to mention really frustrating for the people trying to help me.

Thanks so much again to everyone who's replied, it's really helpful.

@penguinflippers then I'd read up on the NICE guidelines and look to see if you can find out your local hospital's policy on maternal request c-sections. There should Also be some fab advice on the childbirth board here. A c-section isn't without risks or pain, but it does have some advantages especially in terms of being able to plan and prepare.

Your best friend sounds like she would be the perfect person to have with to advocate.

OP I have never sought a diagnosis and had DS1 nearly 19 years ago. I am also selectively mute and literally can't speak, can't even answer questions on where pain is on a scale 1-10, when overwhelmed by pain. I can still see the eye-rolls and hear the sighs. I requested a c-section with the backing of my midwife. The fear of being out of control and in pain meant I was obsessing about the birth rather than making preparations to care for the baby.

I do intend to get a diagnosis before I have greater contact with the NHS as I age as the anxiety produced by being misunderstood and not being able to communicate crushes me.

@Dreamingofsunshine luckily I live near an excellent hospital which has an ELCS rate above the national average - I'm just hoping that doesn't mean they'll be under pressure to perform fewer elective sections in the future. I've discussed all the risks/after-effects of a CS with DH and I've written down how we would cope with each one - so hopefully the consultant would see that I understood the risks.

@KeepOnKeepingOnAgainandAgain that is such a good point about 'obsessing about the birth rather than preparing for the baby' - that's definitely what would end up happening in my case. So glad to hear that your midwife backed you.
Good luck with pursuing your diagnosis I can never get my points across very well verbally, so before my assessment I sent the psychologist a huge document listing all my 'symptoms' and how they were affecting my life - it took me weeks to write and it dredged up some really upsetting memories, but it meant that I could communicate my points/examples far more effectively than I could in in the assessment. I would really recommend it if you think you'll have similar problems making yourself understood on the day.

I have only just been diagnosed, but found being in hospital when ds was born incredibly frightening, I had panic attacks & spent most of the time in tears, at the time the midwives & doctors thought that I was attention seeking. I wish I could walk in there now with my diagnosis & tell them exactly how bad their treatment made me feel & how it has damaged me.

This is such a fantastic thread! I wonder about talking to PAls at the hospital where you would consider giving birth to ask wha support they would be able to give you.

I meant fantastic because you have raised such a good question and it’s great to see the support you are getting on here.

According to this article there is a closed Facebook suppprt group for autistic mothers /mothers to be:

network.autism.org.uk/knowledge/insight-opinion/autistic-women-pregnancy-and-motherhood

Oh @Nat6999 I am so sorry that you were treated that way, I can't even imagine how awful that was for you. Does the hospital have any sort of 'birth reflections' service where you could tell them just how badly they've affected you? Congratulations on your diagnosis, and on your DS 

@Onceuponatimethen don't worry, I knew what you meant I did try to join that FB group a while ago and explained I wasn't a mum yet but just looking for pregnancy advice, unfortunately they said they'd had bad experiences in the past with people joining who weren't mums and to try joining again when I'm pregnant

This thread has been so helpful to me but it's also made me so angry about the way so many of the posters have been treated in labour - no woman, regardless of whether she's autistic or not, should have her concerns dismissed or made to feel like she's 'attention seeking' ffs.

@Onceuponatimethen I hadn't thought of PALS - that's a really good idea