Autism, Labour and Birth

I don’t usually talk about my children, they have their own stories, but those stories are not mine to tell.

But their beginnings in this world are my tales, so I shall tell them. I have been in labour five times. The first was in hospital, the next three were home water-births and the final one was induced in hospital but born in water.

Having discussed this with other Autistic women, there seems to be a familiar story emerging; Autistic women are often not listened to as they labour. Our pain is not always recognised as pain because we do not perform it in the same way as non-autistic women.

I wrote recently about the way that autistic people may present differently with pain (Performing Pain: Autism). We are more likely to go quiet, to find speaking difficult. We are more likely to lack expression, to keep still. We find it hard to communicate our pain in a neurotypical (non-autistic) way when the pain is too big.

Labour is one of those times when people are watching your reactions. To state calmly and quietly that you want some pain relief, may be ignored. Why? Because you don’t look to be in pain. It doesn’t matter that it took you everything you had to gather those words together from the fragments in your head. It doesn’t matter the monumental effort it took to spew them out in a tiny voice. They cannot see that.

I’m going to tell you a story – I’m going to tell you five stories – of the things that went wrong and the things that went right when I was in labour. I have been lucky that all my labours were straightforward. I did not need any intervention at any point, but despite that, the experience I took away from each one was very different.

My first labour was long ago, back in the distant past. A hazy and distant path made all the more hazy by pethidine.

I remember it as being surrounded by arms, everyone touching me when I hated to be touched. I remember being given pethidine and it not taking away any of the pain, just making me feel drunk and out of control. It’s less a tale of labour, and more a tale of the aftermath.

I was terrified by the whole process. Faces I didn’t know. Unfamiliar surroundings. Pain in front of people. It was long and slow and I hated every moment.

Then afterwards, getting things wrong, giving answers to medical questions that would lead to the least amount of invasion (even when invasion was necessary for my health). I hated being touched, I hated it.

I would do anything now to keep people away, I was deep in fight-or-flight and determined to fly. An open ward meant constant sensory Hell. So much noise, so much movement. I did not sleep, I watched my son sleep instead. He soothed me, but all I could do was give the answers I thought they wanted, so that they would let me escape that place.

Did I show them my fear? No. How did I appear in that state of high alert and terror? Calm, placid, compliant, rational. I was not behaving rationally. I was a caged animal looking for a way out. I kept worrying symptoms to myself, because they would trap me for longer. I refused stitches because I couldn’t bear anyone else touching me, I chose pain. I put my health at risk because my physical pain was less real to me than my emotional pain.

I was lucky. Young and healthy, they let me out and I healed well. If I hadn’t been lucky? Would I have asked for help? I don’t know if I would have been able. It would have taken someone noticing, and they would have had to notice an atypical presentation of pain.

Now this isn’t a story about horrible midwives and terrible care. Everyone I met was kind and lovely. There is no villain here. There is just misunderstanding, and that never leads to support and fairness.

People could not see the problem I was looking to solve. They could not see my motivation. I was not driven by “wanting to avoid pain” or “wanting to be healthy”. I had two drives, “protect my baby” and “get to a safe space”. They were my goals. I was not looking to protect my physicality. I was wanting to rest my overtaxed and utterly burnt out brain, but I did not dare until I was home.

I swore I would never set foot on a labour ward again unless it was an emergency.

For my second child I decided on a home-birth. In the UK this is quite common. As long as you are a low risk pregnancy it’s usually very straightforward. There are limits on what pain relief you can have at home, but that was fine by me. I would choose pain over people any day.

I wanted to have a water-birth. I love the water and remembered how trapped and confined I’d felt by my lumbering body in my first labour. This way I would be light and could move, as well as being soothed by the sensory feel of the water on my skin.

When I labour I go quiet. I go quiet and I need quiet. Each contraction rolls through me and I disappear deeper and deeper into myself. In between contractions I am lucid and awake. I am alert and able to speak on my terms, but as the contractions get longer and the gap gets shorter there is less and less of me to communicate.

The room was dark and calm, our small, first-house, living room filled by the pool and my enormous fish-tank. I lay in the water watching the fish swim between contractions.

A midwife arrived and started to unpack her things. She was a soft woman. I don’t know how to describe that properly. I am a hard woman; I am tense and purposeful in my actions, my limbs are long and lean, there is no give in me. She was a soft woman; responsive and warm, with too much movement, too much give and not enough purpose. That was who I saw when she came in. She flustered and fussed over her bag, but did not really engage with me.

I was less and less there. I was quiet and dreamy. She continued to fuss over things, when I spoke in a small voice “I need to push.”

She didn’t turn around. She was six feet from me, but a million miles away.

“No you don’t. Don’t worry, dear, the other midwife will be here soon.”

The other midwife did not arrive in time.

“But… there’s a head.”

For her there was seemingly no warning. I had gone from calmly contracting to crowning without a sound. She panicked. She hadn’t checked the water temperature, she was not ready.

I was.

She pulled me up to stand, no water birth for me, the last moments were loud and bright and wrong.

Then there he was. All 9 lbs 4 oz of him. She wanted to hug me, she hugged me, I do not like to be hugged by strangers.

But this was still better. I was able to bathe in my own bath, fall into my own bed and bask in the beauty of my newest child. I watched him all night. That’s what I spent my energy on, him, not escape. The birth wasn’t perfect, I was ignored and then panicked at by the person there to help me, but he was here.

I did not forget the pain, I did not forget the panic, but it was better.

My third – new home, new baby – she came fast, flew into this world and her feet still haven’t touched the ground. We lived next door to the hospital at this point, so they were happy to pop in and assess how far along I was. When they arrived I was already fully dilated. I remember feeling like if I could just let go it would begin, but I wanted to stay with contractions and not do the birth. Birth is when the midwives would leave their tea and biscuits and their spots on the sofa at the other end of the room, and they would come and touch me.

Two hours from start to finish for number three. Still a silent labour. My midwife was an old hand. She didn’t watch my face, she watched my contractions. She ignored my behaviour in between, that wasn’t relevant, but she timed and noticed each pain.

This was right. She was a hard woman. She was clear and blunt. She had the time to devote to understanding how I laboured, and she was there beside me – not in my way, beside me – every step. She did not monitor me constantly. There were no arbitrary checks every hour. She trusted me and I trusted her back. This was a good labour.

Why was it so much better? Because she didn’t rely on how I was “performing” pain. She watched the strength of my contractions and she listened when I said “I need to push now”. She didn’t need me to say it in a certain tone of voice for it to be true.

My fourth went along the same lines, apart from me not really noticing I was in labour. My midwife was a farmer’s daughter, like me. Years of lambing meant I very much appreciated it as a good thing when she told me I had a “roomy pelvis”.

I was overdue, she had been out to visit me at home in the morning, but said that labour looked like it was still a few days away.

Baby number four had other ideas. I went and had a bath as I started contracting strongly. My waters broke. Twenty minutes. Twenty minutes between waters breaking and birth. That was my time. Moving house again meant we were now fifteen minutes’ drive from the hospital.

Between contractions I said to my husband, “You may have to deliver her.” And the man did not blink.

“Then I will deliver her. We will be fine.” He said firmly.

Later he confided that in that moment he had never been more terrified. For a neurotypical that was some excellent masking!

The midwife arrived between contractions. I smiled and greeted her, because that’s what you do. Even in labour I followed the social rules. I never learnt the times we are allowed to break them. I didn’t know that labour was an exception.

She told me afterwards that when she walked in she thought that I was nowhere near delivery. Until she saw the next contraction.

As soon as she saw how my body was moving she reacted. Another hard woman; purposeful and certain.

She was surprised by how relaxed I seemed, but she put aside all her assumptions the second she saw through them.

For number five I was having other issues. My hyper-mobility which had had me on crutches with the previous three’s pregnancies, was worse than ever. My hips were so unstable in their joints that I could only walk by dragging my legs. I couldn’t lift my feet off the ground to dress myself. It was a dark time.

As it was getting worse and I feared permanent damage. I agreed to be induced in hospital. This was not an easy decision, but with four other children – one of whom was still a baby herself – I was desperate to regain my mobility.

I would have a private room this time. I would be induced, labour and birth all in the same room. The room had a birth pool and a bathroom of its own. A far cry from my first hospital experience. Being induced meant I had plenty of time to make the room my own. I paced it and plotted it. I looked at it all and touched it. I made it mine and packed it away.

The only thing I couldn’t control were the people. I was monitored hourly at first, and then half-hourly. Home births responded to me, hospital births had a regime imposed. I was polite and smiley at first. Eventually, as labour progressed, I told them to stop.

“But this is how we do it.”

I do understand why, but I cannot labour with interruptions. I cannot focus and disappear. I may look calm and receptive, but every time you come at me with a monitor you set off my fight-or-flight. You give me a shot of adrenaline. Adrenaline slows labour. It works against me and the baby.

You may not see my distress, but it is there.

After an age I finally slipped into the pool and wallowed, hippo-like.

I had told this midwife that I would be quiet until I told her I would push. She nodded and believed me. I told her I didn’t want anyone else coming in. She guarded me. She argued quietly outside the door with a doctor who insisted I must be seen. She told her that she trusted me. I knew what I was doing. I should be left alone.

A new face in the room just before pushing would have thrown me. A new pattern, an attempt to mask, to communicate, with energy that I needed to use for the birth. It would have been wrong for me. People are the biggest variable, being unable to control that when I was at my most vulnerable would have been painful.

I know that every health-care professional I came in contact with had my best interests at heart. I know that they wanted to provide the best physical health support. I know they wanted me to be mentally healthy too.

I know that it is a difficult balance. When do you need to intercede if something goes wrong? Is more monitoring the answer? Is it the answer if it slows down labour and increases the chances of complications?

When baby number five was born he had the cord wrapped twice around his neck. My midwife stayed calm and gentle. She told me that I would need to pause in pushing so that she could unhook the cord. There was no panic or force in her voice, and because of that I listened without question. I trusted her. She had built that in a very short time. Such a skill.

She was youthful, but she was hard. A born midwife. All her questions were asked in moments of necessity and always in between contractions. They were closed questions, with short answers. Not huge open ones like “how are you doing?” Which I could have fallen into with my autistic brain.

In moments she had slipped the cord over his head, and she seamlessly handed control back to me. He was born swimming.

Labour is intermittent pain. I don’t respond to that in one reaction. I have a Sudoku puzzle book in which I wrote the times that I completed each puzzle in labour. During contractions I would become silent and far away, then in between I would wake and solve Sudokus. I finished my last one just minutes before a new human appeared in the world. Pain is a switch, it’s on or it’s off. It’s everything or it’s nothing.

Hyper-focus carried me through the in-between times. Every time that was broken, by someone speaking to me, by someone touching me, by someone coming in, making noise, changing something, I had to untangle my mind, and then try to re-tangle it. Every jolt was adrenaline. Just because I didn’t scream at it, didn’t make it less real.

I was never going to have children.

I was never interested in their cuteness or their tininess. I was never going to put myself through labour for a mewling parasite.

How wrong I was. For all the sensory incompatibilities, for all the chaos and the school-gates, for all the parents’ evenings (oh the horror), I would not be without them. I am so very glad that I changed my mind.

Honesty. I needed honesty about labour. I know there is the idea that we mustn’t tell people how much pain something will cause, but that is so wrong for me. I need to know how bad it could be. I will not place a value-judgement on that, pain is just pain, but I need the truth. I need to know the consequences – bad and good. I need to know where, when, how long. Don’t tell me it’ll all be over in seconds if you know it will take five minutes, be honest. I don’t balk at things that need overcoming, I balk at the world not being how I expect it to be.

I will always hate hospitals, but that doesn’t mean I won’t also love every single person who works in them; not just the medical people, the others too. The people who feed and clean and take the time for the smallest and most important kindnesses.

Many autistic women will choose to have babies. We need people to understand that if our words don’t seem to match our behaviours, then our words still need to be listened to. If I don’t look like I’m in pain, but need pain relief, listen. If I don’t look like I’m in pain, but I tell you I’m about to give birth, then listen. If I need some space and peace then step back. Of course I’ll let you come close in an emergency, we all have the same purpose here, we all want the same outcome, but where everything is going according to plan trust me, I’ve got this. I know me.

30 thoughts on “Autism, Labour and Birth

  1. I can relate to SO much of this in relation to my 4 births. The last one had to be an in-hospital pre-planned induction due to my son having congenital heart disease. I was determined to have pain relief this time if I *had* to be in hospital. I still didn’t get any as my insistence that the birth was progressing fast was again totally discounted. Now I at least have some explanations of why this might have been. Thanks.

    Liked by 3 people

  2. Stories like this should be told to med students of all kind – they should be told that every person reacts and acts diffrent when in pain for example.
    As an NT person with fibro I tend to go quiet to when painlevels get high. And no, people don’t belive that I can be in so much pain either since I seam so positive and happy…
    Take care and may your Christmas be as you want it 💕

    Liked by 4 people

    1. Same to you, I’m hoping for more snow. I make an excellent snowman. And yes, many NTs also react atypically to pain. It’s so important that we listen to people. I’m sorry you’ve had the same experience of not being heard 💐

      Liked by 1 person

      1. Yes, more snow that stays! Here it snows in the evening and rains the next day. Over and over again 😝 Somehow I get the feeling that it’s a bit of a “womanproblem” not being belived when you talk about pain and stuff. Men dosen’t seem to have the same problem with it…

        Liked by 1 person

  3. Thank you for sharing your experience. I have asked how autistic parents cope with the sensory issues that come with babies, the screaming most especially. I never wanted kids. I am autistic and can’t even go to restaurants as a screaming child will rent the air at some point. Even with noise blocking headphones, the stimulation is too much. Every story is different.

    Liked by 4 people

    1. It really is. I’m not going to pretend the sensory side can’t be difficult. Babies crying is not one of my particular issues, and it felt different again when it was my own baby (though I couldn’t possibly have known it would).

      And then there can be even more issues if your child had incompatible sensory issues with you.

      Every story is different indeed. No right or wrong journey, just different.

      Liked by 2 people

    2. I didn’t realise I was autistic until my eldest (now 16) was a toddler, but I did go on to have 3 more kids. I found that although it was certainly stressful at times, I was far more immune to my own kids’ noise than other people’s kids- and I tried to do what I could to prevent crying with a lot of attachment parenting and breastfeeding etc.. Now my youngest is 8 I find I’ve become far more sensitive to the crying of babies and kid’s noise again and it’s causing me far more issues than for the past decade. I think this probably happens to some extent to most parents- (although I’ve never understood how *anybody* could do ‘cry it out’ personally..) but maybe more so to autistic ones. Now headphones or earplugs are my go-to. Or just getting away from the noise as far as possible. I get upset on the crying child’s behalf, more than annoyed at it, per-se- but it still induces a panic response. I didn’t have this half as much with my own kids though, so I expect there’s some built-in protection there somewhere. It’s hard if you’re a sensory avoider who has sensory-seeking kids though…

      Liked by 3 people

      1. Yes, that’s a really good point, I didn’t have the same reaction to my own children’s noises as I do to other people’s. I’ve wondered if maybe I’m becoming less able to cope with increased sound as I get older. Noise cancelling headphones are a wonderful thing.

        Like

  4. Thanks so much for sharing this story. I have an Autistic daughter, and it is often hard to interpret her pain and symptoms when she is not feeling well. This was very helpful.
    All the Best,
    Gwen

    Liked by 3 people

  5. Inner weeping going on here. I only had one birth experience – far too like your first – and long before I knew I was autistic.
    It was traumatic. I did not have the courage for another.
    Thank you for translating what I could not.

    Liked by 1 person

  6. Rhi ,
    You are truly amazing to have experienced this 5 times you need a fantastic Medal , My Autistic daughter has said she could never do what you have done Autistics are the most amazing people in the world always surprising you in what they achieve totally misunderstood and even today the Medical profession finds it difficult to understand autism. Hazel who is in an Eating Disorder Unit she has Anorexia as well as Autism still is not having her Autism treated Luckily I have found a nice small Charity called the Challenging Behaviour Foundation who I am hoping can help us. So many misunderstood Autistics are either in Prison or in a detained facility. thanks for the post excellent as usual.

    Love and Kisses Laurence xxxxx

    Liked by 2 people

    1. You’re right that autism is so misunderstood. As you say, so many “autism experts” get it very wrong. Autism is a great brain type, we just need a bit of extra understanding in how we work. I always say that unless you have every brain type thinking about something, you will never get the whole picture! We all need each other. I hope you can find the support Hazel needs to be a fantastic autistic woman. It’s hard being young, I wouldn’t do it again for all the money in the world!
      Rhi

      Liked by 1 person

  7. Thank you for sharing your experiences. I am NT, with one autistic son, and one who is waiting to be assessed. My oldest and I both curl up and go quiet when in pain, and we both certainly don’t like to be touched when unwell or in pain. Your experience of not being listened to and treated as an expert in your own body is unfortunately a very common occurrence. Thank you also for deepening my understanding of how people with autism cope with pain.

    Liked by 1 person

  8. I love these stories and I relate so much to so many aspects of them from my own two birth experiences. Yes to the need to journey inward and be silent, yes to not performing pain. And a big yes to midwives who are more like vets, going on physical signs from a watching a labouring woman’s body. If you find this midwife she is like gold – if you have one with her nose to a clip board and ideas about how long labour should take…beware!

    Liked by 1 person

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