Autistic Mums experiences of giving birth and postnatal care

[MollyChandler]

I am 26 weeks pregnant and autistic. I received my diagnosis when I was 18, over 10 years ago. I am not great with new experiences, particularly when there are people I don't know around, and obviously giving birth for the first time is a very new experience!
I am not particularly worried about the birth, I am low risk and hope to be able to have my baby in the local midwife unit. I feel fairly well prepared for the actual birth part. What is worrying me is immediately after the birth, particularly being on the postnatal ward, which sounds like my idea of hell, and a very bad environment to be in if I am overloaded. The local hospital does have a few amenity rooms attached to the postnatal ward that, if I have a straight forward birth, I hope to be able to pay for, but they are available on a first come, first served basis so there is not a guarantee of a private room.

I have a very supportive partner who knows very well how I react when I am overloaded and will be a fantastic advocate for me. However, so far every midwife I have seen has just brushed off the fact that I am autistic with the one I see most frequently repeatedly telling me that I cannot be too controlling of the situation and that it is a very unpredictable business. I am fully aware that childbirth is unpredictable! I am trying to gather as much information as possible so I can be prepared for all eventualities. It worries me a lot that they are not listening.

So, are there any mums out there who have given birth in the last few years who can tell me:

1. If it helped to inform the midwives of your diagnosis?
2. If you overloaded during/ after?
3. How you found being on the postnatal ward after giving birth?
4. If you had a straight forward birth for your first child, how long did you have to stay before you could go home?

Thank you for reading all this!

I'm not autistic but wanted to reply.

It is totally reasonable to want to gather information. Midwives may have had virtually no training around what autism is so they may be tricky customers. I do think it will be useful to inform the staff of your diagnosis when you have the baby but I would suggest writing a few bullets of explicit instructions of how they can help - and stick it by your bed - because they won't know.

I would suspect that there will be a private room free, probably not that many people pay for it... but can you find anyone who can answer a concrete question such as - how many times in the last month has there not been a free room for someone who has requested one?

Is there anything you could take (headphones, eye mask??) to help manage overload in a postnatal ward? I'm sure you've thought of this.

Trouble is that even if you have a straightforward birth, you may need to stay in for help with feeding etc. Some people can go home the same day and some need to stay overnight. You just never know, which is obviously hard to plan for. You could draw up a plan for scenario 1, scenario 2 etc?

Good luck.

Also, I know this is slightly off topic but have you considered taking part in research studies looking at the experiences of autistic mums? There's been hardly any research in this area so far but it is sorely needed so that perinatal services can better cater for the needs of autistic women (and stop you getting responses like the ones you've had). Prof Simon Baron-Cohen at Cambridge I believe is doing some studies of this kind so either get in touch with him or keep an eye out!!

I was sent home the same day so never went on the ward. Just stayed in the private birthing room.

Survival tactics for the ward would be similar to public transport or a crowded supermarket I guess. Take earplugs and sunglasses.

If you have no complications and the birth is straight forward you could leave 2-3 hours after the birth. To be honest your main concern should be the health visitor appointments - many view mums with an autism / asd diagnosis as higher risk for pnd due to higher incidences of anxiety etc and may inform social services proactively.

Hi, interesting op. I am autistic but that is not information I generally share in real life and it didn't occur to me to inform the midwives. I was a low risk birth but there were complications which lead to me being transferred from the midwife lead unit to an emergency room.

I have never thought about how my autism may have affected my experience of labour before. As stupid as that may sound. I found a lot about the experience quite traumatic but think that is probably normal as giving birth is a big deal. I felt a great sense of relief when I got transferred to the emergency area. I felt much calmer there.

I spent about 16-18 hours in the postnatal ward. I think I was too sore and tired (hadn't slept for over 48 hours at that point) to really absorb everything. If there hadn't been complications I believe I would have been able to leave the ward much sooner. You really cannot plan for this though, mine should have been a very straightforward birth and it wasn't.

I’m autistic, but at the time I had my DDs I wasn’t diagnosed. My experience of birth isn’t typical either, as I gave birth in my own hospital, where I’d worked for 9 years and knew the staff, had a single room both times and a six hour discharge ditto.
I think you need a plan for how to deal with the postnatal ward, OP. Some of the threads on here describe an utter hell of blaring TVs, noisy visitors, snoring patients and overnight staying husbands, endlessly crying babies and so on, which would induce meltdown in the mildest autistic!
Definitely either pay for a single room or book the earliest possible discharge. Thankfully, hospitals nowadays do get you out as soon as possible - even after a Caesarian, it’s only one or two days now. It used to be 5 days for normal delivery and ten for a CS.
I agree with the PP who suggested headphones and sunglasses - anything to reduce the sensory overload. And if you’re on any monitoring during labour, get the midwife to turn the sound down. The repetitive whoosh and bleep of the machines is hell for autistics. I used to mute all my theatre equipment (I was an anaesthetist).
It isn’t a big chunk of your life, and you will get through it, but you’re wise to discuss it in advance with the labour suite team and ward staff and have a plan. Good luck!

I'm not autistic but my dd is so I have insight... yes postnatal wards are my idea of hell too! Noisy, full of tired, emotional, yet ecstatically happy people. My advice is to enquire to see if you can be discharged straight from delivery, whilst not always offered for your first baby or possible, this allows you to go to your quiet normal space, normally a midwife visits you at home, but would be best if you have your mum/sister/friend who has had kids to support you in addition to your partner if opting for this (in my experience most men don't have a clue with their first!)

Also please read up on all the interventions possible and reasons for transferring so you aren't startled too much if it doesn't go to plan, perhaps visit the likely referral hospital.

Finally headphones are your best friend!

I'm not autistic but there are a number of reasons why I'm not keen on the postnatal ward at all. I'm having a c section so know I'll need to stay in at least one night but I had a meeting with a consultant and my midwife and we all agreed that I would need an accelerated discharge and that, for the sake of my MH, my time on a ward should be minimised. Sadly my hospital doesn't have private rooms otherwise that would be a good solution. It helps, I think, that I live close to the hospital but even so, I was quite firm about the negative impacts of the ward on my MH.

Maybe it would be possible for you to call the ward and ask to go and have a look before you give birth. Explain youre autistic. If they say no, can you ask if you can have some photos of the ward and who might care for you.

No diagnosis but don't like other people touching me/lack of privacy/noise etc:

on the post natal ward, what was hard was the bf helper touching my boobs to try and get DD to latch on when she was sleepy, a horrible memory and happened quite soon post partum.

If you would freak out with someone touching you, make sure that you make it clear that you want advice only/or for them to leave you alone on that front.

In fact second baby the advice wound me up, they didn't touch me but they did tell me I was doing it wrong when I wasn't and I'd fed my first one for ages.

I couldn't sleep at all on the postnatal ward as it was so bright but on the upside you hardly see the staff as they're so busy.

and I felt overloaded both times but the fact the experience is so exhausting helps as you are in a bit of a daze. Branleuse's advice seems good to me about going to see the ward etc.

I only have autistic traits, but my midwife (I have one for myself here) did say that affected my first (horrendous in her words) birth.

I went overdue, was calm on the surface, but was eating myself up inside. Then my ob did a sweep and things kicked off, but when I arrived at hers (MLU) after a night of contractions to check how things were progressing, she wouldn't let me go. She genuinely believed baby was going to make her appearance in half an hour flat. I hadn't told her I loathe surprises like this, so long story short, she completely got me unawares, contractions went, I ended up on a drip with no pain relief (not available at MLUs here), failure to progress at 10 cm after 13 more hours, transferred to hospital for ventouse, because my ob wasn't sure they were going to pull it off properly there. Postnatal wasn't too bad, but there are maximum three mums in a room here (in mine there were only two) and my roommate didn't have many visitors.
Fast forward a year, back in the MLU. Midwife swore she'd leave me at home until I said I wanted to go. Contractions did go as soon as I arrived with 7-8 cm and saw the same bed where it all went wrong, but she said she didn't care and to go and sit or lie where I was comfortable. So we waited and they came back. Gave birth in the pool until DS's shoulders got stuck at which point my ob arrived.

Postnatal was bliss, though, because there was no-one else there and I went home after four hours and snoozed on the sofa, watching TV.

IMO, it's important you know your surroundings and maybe the midwives too. Is there a possibility of hiring a private one (in Germany it is) who will come to the hospital with you to do your birth?
I would also tell the hospital you insist on leaving ASAP. No ifs, no buts (unless there's something medically wrong obviously).

Or have a home birth. That's still my ideal, but unfortunately where I am, it's not going to happen.

Wow, this is amazing, thank you, everyone for replying.

@diddlediddle I quickly realised that midwives have no training whatsoever about autism. That is a great idea for the notice by the bed, my partner is also well practised at explaining this. And I am well prepped with aids to help with overload, big headphones and music are my favoured aids. I am booked in for a tour of the wards, so that will be a good opportunity to ask about how often the rooms are free or unavailable.

And, sadly, there is no research into autistic mothers. I regularly take part in autistic research at Kings College, and give talks to clinicians in training there about living with autism and it was quite odd when I began talking about pregnancy, so many turned round and said it was a great idea for new research.

@Preggosaurus9 I think commuting on the London Underground at rush hour may have been good preparation for this!

@Jellylegsni to be perfectly honest I wouldn't have been nearly so worried if I hadn't previously had a miscarriage at 12 weeks. My experiences then has thrown up all sorts of alarms for myself and my partner. I am prepared, I think, for things to go wrong, but not having a plan for a best case scenario and then all being ok would probably throw me just as much.

@Babdoc Thank you for the advise on the machines, that had not occurred to me, but the noise would have a massive effect. So long as they are available I plan to get a private room. Do you have any advise on booking the earliest possible discharge?

@stucknoue I am researching every possibility, mumsnet had been an amazing source for this. Luckily the midwife led centre is in a hospital across the corridor from the consultant led unit.

@mynameiscalypso perhaps MH is something that will be listened to more, so far my midwife has just told me to stop being so controlling and all I need to do is a bit of research. Not very reassuring, but it is good to hear that you are being listened to.

@Branleuse tour is booked, and there are a lot of good photos online.

@restingpigeon I had not thought about BF helpers touching me, thank you, that's a good point to make clear.

@kikibo I'm sorry to hear about your experiences.
Locally, they are pretty consistent with seeing the same midwife, but I have been considering a private midwife. I think a home birth would be a very good alternative, my mum had a great home birth with her fourth, and it was certainly the happiest I remember her being after having a baby, however it would depend on where I move to, a home birth in a rented flat probably isn't very kind to new neighbours!

stop being so controlling? Wow! It is amazing how little some people understand ASD in this day and age.

I also agreed to having a student ob examine me for dilation because I wasn't expecting it and have trouble asserting myself with unexpected demands - another one you may want to be clear on, no letting the students have a go!

It's funny that the bf help mauling is what really upset me but I'd geared myself up somewhat for the rest of it and just when I thought I'd reached the end...

MollyChandler

It wasn't too bad. My midwife found it much worse than I. 😂

She does have a little experience with ASD, though, as her grandson is on the spectrum. Though unfortunately since she's known this about me, she thinks she knows me better than she does.

I would say definitely get that private midwife, because it gives you the chance to get someone you like and trust and know, so they can actually reassure you and you don't have to worry you'll get someone you can't stand.

The reason why I went to an MLU here was because I didn't want people I haven't seen before doing things to me because of procedure. And especially not poking their fingers up me because they feel like it. My ob and midwife can stick their fingers up me all the time now if they wish, but I've known them for more than two years, so that makes a huuuuge difference.

I'm actually expecting DC3 so she can still do that birth hopefully (baby must be smaller), as she's going on retirement.

Sorry not Autistic either but I'm a nurse in an intensive care unit and I have an ASD daughter.

When I have patients come through my unit with an ASD diagnosis I write a page or two about their needs, unfortunately this is usually from a caregivers perspective as my patients usually cannot communicate with me bc of whatever disease they have.

It ALWAYS starts with Hi, my name is (preferred name) and I have autism spectrum disorder NOT an intellectual imparement.

Hospital is hard for anyone but because of my autism it will probably be even harder for me to cope with. You can help me by;

And then some headings around

Communication e.g.eye contact or no, when you talk to me please give me some extra time to process what you've said before I respond etc.

Sensory considerations
What ever your personal needs are, AND perhaps bring your own bedding etc. Lights might be an issue and they may use torches overnight. Will this bother you? Also invest in some ear plugs. It will be loud with other babies, visitors etc

I also include a line about melting down that usually reads something like. I probably won't meltdown during my stay but if I do, please understand that everything has gotten too much and I can't control what I'm doing. Please don't touch me but reassure me that I'm safe and stay near me/get my DP until I feel better- or whatever works for you....

I do this because most medical staff have little experience with ASD and I know that my colleagues really DO want to understand and help, they just need to be pointed in the right direction.

If you we're prepared to write something similar for your file trust me the staff would be grateful 😁.

And huge congratulations

@ restingpigeon I can understand people not knowing a lot, but it does amaze me how many medical people who know absolutely nothing about ASD. My mum has warned me not to let students near me also! She always found them very distressing.

@kikibo So often when I do come across someone who knows a person with autism it is a young autistic boy! Or mention Sheldon from Big Bang! My local trust have so far been very good for seeing the same midwives, and everyone I know who has had a child there have had one or two midwives that they had met before. Congratulations!

@Takemetovegas You sound lovely, this is brilliant! It can sometimes be difficult to break down autism to a clear and concise description, I get bogged down in describing the fine details too much and end up with a full novel! Thank you

I'm an aspie and when I had my first it was a horrible experience, traumatic birth via forceps and when I got onto the ward I asked if my mum could stay with me longer, the midwife rolled her eyes and her exact words were "you're a mother now it's time to woman up" I burst into tears I had a blood pressure machine which inflated every hour and drip attached to me all night due to ventricular tachycardia, I just wanted to cry and cry and cry.

I struggled alot with all the prodding and poking, the sensation when they removed my catheter, everything.
I really feel like if they had handled my aftercare better it would of made the experience atleast bearable.
I'm currently 32wks and dreading the birth again for the same reason

I planned to have my son in the midwife unit, prepare yourself for the possibility of having baby in hospital.
Assuming all goes well there’s no reason for you to stay in, I left after 6 hours after a traumatic labour

I would second having something written up in your notes about your needs and wishes - your healthcare team may change several times if you’re in for a while.

As an aside, can you change your midwife? She doesn’t sound supportive.

If you are looking for super quick discharge after, and it is entirely possible, I would recommend asking what needs completing before that happens and making it clear (in writing if you need to) now that those are your wishes, providing all is well with you and baby.
There are a number of baby checks that need completing and can delay the process - waiting for a specialist midwife to complete the last baby check and paperwork delayed us by 1.5 hours (shift change etc) but we insisted and left just before midnight. Some hospitals don’t like night time discharges and will grumble because it is lots of paperwork with fewer staff but certainly not impossible.

Can you request a meeting with head of midwifery to talk to your concerns and your plans? They are generally happy to meet and may have suggestions on how to put things in place early so worth a try?
Stick to your guns.
Good luck x

@ MissPollyHadADolly19 Sorry to hear you had such a horrible experience.

@Ravingstarfish It's also good to plan for a best case scenario, I think it would really throw me if I'd only planned for worst case and then nothing went wrong.

@Tini17 I don't know if I can change, the only other midwife I have encountered at my GP surgery fills in forms incorrectly, at least with my current midwife she writes down the correct information on my notes. That's a really good point about checking what needs to be done before discharge, and meeting the head of midwifery, thank you!