I’m a mum of three but it’s only since having my children that I’ve learnt I’m autistic. My older child is now 8 and my twins 5. My autistic realisation, like for many, caused me to re-examine all sorts of life experiences through a new autistic lense, not least those relating to becoming a mother. Here I share a little about my perinatal journeys (1) and reflect on what helped or might have helped me had I known I was autistic, with the hope of helping other expectant neurodivergent people. I’m a strong advocate for enabling women and families to make informed choices and decisions to suit their own needs, desires and circumstances. Even if my preferences and suggestions aren’t for you, hopefully they will help you think about what might support you.
PREGNANCY
Sickness and sensory issues
Without wanting to start with such a negative, nausea and vomiting marks the beginning of many pregnancies, and there’s evidence to suggest that autistic women are particularly prone to this. (2) It makes sense to me that I was more likely to experience hyperemesis gravidarum (HG), aka severe nausea and vomiting in pregnancy, due to my autistic hypersensitivity to stimulus. This was heightened during my pregnancies, particularly my sense of smell. The awful, debilitating nausea and sickness I experienced for the first 16-18 weeks of both my pregnancies wasn’t a great deal worse in my twin pregnancy.
I lost a lot of weight, yet because I was rarely vomiting I didn’t realise (and wasn’t told) that it was HG. Only more recently have I learnt that there is a less common ‘dry’ kind, with little vomiting. Had I realised perhaps I would have got better, specialist support and contacted the charity Pregnancy Sickness Support. (3) At the time I suspected that my strong sense of smell didn’t help. It wasn’t easy to go into the kitchen never mind open my (clean!) fridge. Brushing my teeth, moving about (as opposed to lying down) and most smells were triggers. Even having a shower was problematic. I couldn’t bear the smell of soap or shampoo, and I would be left exhausted and needing a nap before my hair was even dry. I could avoid some triggers of course but not others. I took the chance to lie down and rest whenever possible; preferably just me and the TV.
So little ‘getting stuff done’ would usually stress me out but anything more than lying down and watching light-hearted comfort shows (typically Friends or Gavin & Stacey) was hard to manage. During my first pregnancy my GP signed me off work for some time and I was also able to ‘work’ from home. During my second pregnancy I wasn’t working at least but it was tough not being so present for my lively 3 year-old. I lowered my standards, let him have more screen time (often with me crashed next to him), and was thankful that my sickness passed in the second trimester, unlike for some HG sufferers.
Eating
When it comes to eating when I’m not pregnant, unless I’m ill or feeling particularly dysregulated I enjoy a healthy and diverse pescatarian diet. But when pregnant and nauseous my diet was extremely limited and mostly beige. It was hard to find much at all that I could stomach and especially for any length of time. Trusting when and what my body was allowing me to eat and trying not to feel bad about it was essential, particularly when the only liquid I could keep down was Diet Coke. Bananas and custard, crisps, white toast, mashed potato, baked beans and macaroni cheese were key items on the list of foods I could sometimes nibble on. Comfort foods from my childhood! I couldn’t imagine eating and enjoying a salad ever again but as soon as the nausea eased my body seemed to compensate and I went through a stage of being ravenous and eating far more and better which I was more than happy to go with.
Trusting your body and intuition and being mindful of what you are told and read
Along the same theme, you are told a lot in pregnancy about what you will experience and when as if it’s somewhat written in stone and the same for every woman and pregnancy. IT ISN’T. This is especially worth remembering if you are prone to taking things literally. For me, the feeling of ‘being pregnant’, not to mention the nausea, kicked in before most women feel it. Likewise, when I started to sense movement weeks before the time most women feel baby move I was told it couldn’t be the case. Yet this seems understandable if you are hypersensitive, including to your own bodily sensations. Less easily explained, my predictions about the sex of my babies turned out to be accurate. These days I’ve more trust in my intuition.
That’s always useful as a parent, but easier said than done if your mind is crowded by anxiety and bombarded with multiple sources of often contradictory information, advice and opinions. If you are able to hone in on what speaks to you then do your best to discard the rest. Contrary to the common suggestion to just ‘smile and nod’ when friends, family and even strangers give you advice that you don’t want because ultimately they mean well, shutting those conversations down early on, and thereby hopefully reducing future interference, was more important for my mental health than being polite. Having to justify your parenting actions and choices is another thing you get used to, but over time I’ve tried to do this less, not only because I don’t have to but also because it can be futile and is not good use of my mental space. Practice this asap I’d say because annoyingly it only gets worse when baby is born…
Continuity of care team
I wasn’t fortunate enough to have continuity from the same team of health professionals throughout my pregnancy, but this is an adjustment I would certainly have requested had I known I was autistic. (4) I feel I would have benefitted greatly from being able to develop a trusting relationship with a midwife who was kind, flexible and aware and accommodating of my needs and communication preferences. Not to mention, who had the patience to answer my many questions and go into the level of detail I needed. Reducing the number of health professionals that I had to communicate with, and having someone to advocate on my behalf, especially during my more complex twin pregnancy, would have really helped my anxiety. Some women who have the necessary funds hire a doula to provide them with extra support and continuity, which I can understand the attraction of.
Contact with the outside world
As the due date of my first pregnancy approached I withdrew from contact with people (much to the frustration of my family), in an attempt to try and stay calm about being overdue and a pending induction which I was keen to avoid. I found messages asking me ‘If I’d had it yet?’ very annoying and distracting and regretted having informed people of the exact due date.
We didn’t tell anyone when I’d gone into labour, because I didn’t want my partner and I to be distracted by messages requesting updates. When our son was born I wish we’d put off letting people know a bit longer. Even just a couple of hours, to give us a bit more peace and quiet after the birth as just the three of us, free from messages and telephone calls. It’s not time you can ever get back. We really valued some peaceful ‘golden hours’ after the birth of our twins, which also helped with skin-to-skin and getting breastfeeding established.
BIRTH
Place of birth considerations
I’m a planner and an organiser who likes to be informed and prepared with lots of relevant and reliable information. No time was this more evident than in pregnancy. Despite already being more informed than most (I’d previously worked in research and policy for maternity charity NCT) I did a lot of reading and research to inform my decision-making. Firstly about where to give birth. My first pregnancy was straightforward and low-risk, meaning I had more options and I opted for a midwife-led birth centre which I’d had the chance to visit and where I felt I’d feel more relaxed. But the first I knew about being in labour was my waters breaking with visible meconium (baby’s first poo) which can be a sign of foetal distress, so we were told to go straight to the obstetric unit at the hospital. The change of plan was stressful for me, but I’d given other aspects of the birth a lot of thought too, which helped me and my partner to remain focused on trying to achieve a more relaxing birth environment.
Second time around, other than choosing which hospital, I had no birth place options due to the increased risk associated with twins. The only alternative would have been to hire an independent midwife, if I’d wanted that or had the money. Had my first birth been more straight forward, and my second pregnancy just the one baby, a home birth would have appealed to me, because I think I’d feel less distracted and more in control in my own environment rather than a medicalised one.
More birth planning and preparations for an optimum environment
In my birth plans I set out preferences and instructions to help create a more relaxing environment. I say plans, because of the need to be flexible, hence producing ‘birth preference’ documents for both vaginal and caesarean birth, which we took along to the hospital when the time came.
Birth planning for my twin pregnancy was far more complicated and partly because some of my preferences for a more physiological twin birth were beyond the comfort zones (and guidelines) of my care providers. This necessitated a lot of meetings, discussions and negotiations and ultimately the Consultant Midwife signing off my plans following a late healthy scan and circulating them to midwifery staff. I’ve since learnt that an interest in NICE Guidelines (5) is an autistic thing! Ultimately it worked out well but not without a lot of hard work and stress in order to decide and exercise my choices. There’s more information about my twin birth and the journey I went through to get it in an article I wrote for a midwifery journal. (6)
I wouldn’t necessarily suggest going to the lengths I went to to plan and prepare for birth. But the exploration of my options did help me identify key things that helped me cope in labour. Even without knowing that I was autistic, through my birth preferences I advocated for the sorts of accommodations that can benefit autistic women. This includes a quieter, calmer and darker birth environment and minimal interruptions, for example with questions put to my partner first. Being given full information and explanations about my care and opportunities to discuss any changes was also important.
These preferences to support my sensory and information needs are also common hypnobirthing suggestions, known to help the production of the hormone oxytocin (the love hormone) which brings on contractions and helps you stay calm. (7) I’d practised hypnobirthing religiously in both of my pregnancies, through the use of Natal Hypnotherapy audio tracks, which I found helped increase my confidence in my ability to give birth and me to stay relatively calm in labour. (8) I also hoped to labour in water for my first birth, which I think would have helped with pain relief and relaxation, but that didn’t work out.
Due to needing extra monitoring each time, and particularly during my first birth, I did need more peace and quiet than I got, and often fled to hide in the toilet to get it. At times I also wore an eye mask in labour to remove visual distractions. Noise cancelling ear phones would have been good too, and on the postnatal ward after. With the twin birth I felt the staff were more respectful of my choices and gentler with me, in part because I was more obviously vulnerable due to my anxiety about it being a twin pregnancy.
Packing comforts not only essentials
My hospital bag didn’t include my own pillows or blankets, but now it is hard to imagine how I managed without my soft favourites. I did have my essential dressing gown, eye mask, lip balm and hand cream. I can’t bear having dry hands or lips. During full on labour my lips felt so dry that I had my partner apply lip balm for me in between every contraction. I also couldn’t have done without my slippers, and flip flops to shower in. My naked feet were not going on those floors. Straws came in handy for taking little sips in labour. Not to mention edibles. I couldn’t keep anything down in labour but afterwards I needed my own snacks. Including the pack of Cadburys Fingers that I put away soon after my first son was born. My partner felt the full extent of my wrath when he suggested I might want something healthier!
Private hospital rooms
Even without knowing I was autistic, as a light sleeper at the best of times, I knew that getting a private room for an overnight stay after the birth would be critical if I was to get any sleep. For this reason, access to private hospital rooms was one of my considerations when choosing a place of birth. Bear in mind though, it can’t be guaranteed and you may have to pay. During my first labour we specified that we wished to pay for a private room after the birth, but when the time came were told there wasn’t one available. Sure enough, 48 hours after my first son was born I hadn’t had a wink of sleep on the busy postnatal ward and I ended up threatening to discharge myself in the middle of the night to expedite my return home. Second time around and in a different hospital we did get a private room for the one night before we went home which made a big difference. Not only because I got a few hours sleep but because it was so much easier having our own space and privacy. I was prioritised because I had twins but we also knew from experience to keep reminding staff about the request when I was still in labour. Now if I were requesting a private room again I’d emphasise being autistic and my sensitivity to noise and light. You can but try.
POSTNATAL
Mental health support
My mental health experiences were very different in my two parenthood journeys. For my first child, once I’d gotten over the first difficult trimester, my mental health was good. As long as I was getting out and about I really enjoyed being a new parent, despite since recognising that I experienced some postnatal anxiety.
When our planned second and final child turned out to be twins, I knew I’d find having three children very overwhelming and challenging. This unexpected news caused me great anxiety and spiralled into depression, which continued beyond into the postnatal period. At the time I didn’t access any support, partly because I was so anxious about the thought of involving someone additional in my care, who I feared would be yet another person saying the wrong thing and making me feel even worse. It took a mental breakdown when my twins were nearly three, triggered by my epiphany that I was autistic (a different story!), to make me access the metal health support that I needed, and to realise that I had been suffering with anxiety all my life. Had I been able to access appropriate perinatal mental health support, perhaps I would have found it easier to enjoy more moments of life as a busy mum of three with young twins, or at least to adapt and cope better.
Breastfeeding
Breastfeeding was important to me and I was determined to make it work. While I had a lot of problems to overcome with my first son, I was fortunate that I didn’t experience some of the issues and difficulties commonly reported by autistic women, including uncomfortable sensory sensations and high levels of pain. (9) Once breastfeeding was going well, although I felt ‘touched out’ at times when my baby was particularly keen not to be off the breast, I really enjoyed it on the whole.
During both pregnancies I’d already gotten to know someone who I trusted and felt comfortable with to help me with breastfeeding. Accessing support that met my needs was key. I saw an International Board Certified Lactation Consultant privately, including postnatal visits at my house. After my first son I’d already learnt that it is never too soon to get help with breastfeeding. You could even contact private support from inside hospital if you feel you’re not getting the help you need there, which is sadly not uncommon.
As any breastfeeding mum soon comes to realise, it takes a lot of time, especially in the early days. But I didn’t have a problem with sitting around or lying down to feed for long periods of time when I could distract myself by getting absorbed in a box set or something on my phone. Expressing milk and washing and sterilising bottles I found far more stressful, although it was necessary with my first child who didn’t latch for the first few weeks.
Parenting boundaries, visitors and gifts
I’ve always been somewhat able to set and maintain boundaries for myself and family, but realising I’m autistic has helped me do this all the more. This would have been useful, for example when it comes to receiving unwanted parenting advice and interference, and with visitors and guests.
Amongst the people who want to visit you and your little one you might want to think about whether there is anyone you really want or have to see, and put off the others. They might think they can just pop in at a convenient time but there was no convenient time for me in the early days because it was impossible to predict when I or the baby would be trying to sleep. Plus guests are prone to overstaying their welcome. When I was already overstimulated having more people around was not what I needed. This meant that those who came with their kids were particularly difficult. Visits need to be on your terms.
Although I did keep visitors to a minimum there were some early visits I found very stressful. I remember them distinctly, and particularly how everyone else seemed to be sitting around really happy and excited with nothing to worry about except for getting a cuddle in but I was sitting there really stressed, completely overwhelmed and screaming on the inside. Moving forward I asked my partner to keep an eye on the clock and voice when it was time to go, in the interest of looking after the new mum and baby.
Gifts were also tricky for me. Generally I dislike presents as I find clutter and waste stressful and unless I’ve chosen them myself they’re rarely anything I want or use. If people asked I tried to be specific, although I wish I’d said to others that they didn’t have to bring anything, but if they wanted to, vouchers would be most appreciated. Even for take aways to help with meals in the early days. I found the best visitors were not only quick but those who would bring or do something useful. Such as bringing a prepared meal to leave us with or picking us up some groceries. Which brings me nicely to the topic of help.
Asking for help
I was fortunate to have help from family and friends but learnt to be selective and intentional about what help to accept, ask for and from whom. For example, when I had my twins, it was helpful to have friends and family who could entertain my older son by taking him out or to their place. Having them over to play with him was not helpful because it added to the noise and chaos when I was already struggling with sensory overload. Some help was more trouble than it was worth, for example from people who needed a lot of instructions, or worse wouldn’t follow them.
People often want to help but don’t know how. It is probably clearer to you what needs doing than to them so specific requests are best. Even with your partner. We found specific things he could be responsible for (like laundry) rather than me having to constantly make requests. When I had my first son I don’t think I changed a nappy the whole time my partner was on paternity leave, given I was busy expressing milk and breastfeeding round the clock.
After the first few weeks and definitely months I found offers of help dwindled somewhat, and sometimes when I needed it most. For example when the newborn bubble has burst or my babies were going through yet another difficult ‘phase.’ Looking back there were times I could have made more specific requests for help. Often if you don’t ask you don’t get.
Mess, clutter, chaos
If you’re anything like neat freak me who needs my home to be tidy and organised, the mess, chaos and general amount of new stuff that comes with a baby can be hard to handle. The often-heard advice to ‘just ignore the mess’ or ‘leave the washing up’ was NOT for me. Not in the least at dinner time when we needed clean plates or when you couldn’t find the things you needed among the mess. What did work for me (or at least sometimes), was being more selective with my tidying and shutting the door when possible on messier rooms and putting stuff that needed organising in there, keeping it out of sight until necessary. I was certainly grateful for the spare room.
Lowering your standards and being kind to yourself
When it comes to mess lowering my standards doesn’t work for me, but for other areas of my life I consider myself a perfectionist in recovery. And there’s nothing better to help lower your standards than having three children.
Key safety issues aside, when you read/ hear that it is best for your baby if you do X, don’t take this too literally. What is good for you is also important. It’s harder to look after anyone else if doing whatever the advice tells you to do is driving you up the wall. Too long after having my first son I discovered this tale and graphic about the ‘Shitty Guilt Fairy’ that you give birth to alongside your first child. (10) I love it and send it to all of my friends when they have kids.
I find it especially important to be easy on myself when I’m knackered. When you’ve been tired for months on end it can be hard to forget what you are like otherwise, but the impact of sleep on your mental health shouldn’t be underestimated. It is so much easier to be less anxious and more positive when you’re not knackered. Just learning this made it a bit easier for me. Tapping into my sources of autistic joy has also helped ground me and enjoy moments throughout the daily slog. Sniffing the heads of my little ones helps me to enjoy them.
Socialising & connections
Getting out and about was a lifesaver for me after my first son was born. We both seemed less relaxed and settled at home unless he was boobing or snoozing on me and I was zoning out in front of the TV. Mums and babies groups aren’t for all, but I found some better than others and found making friends with other likeminded parents going through a similar thing comforting and sanity-saving. Especially if we could instead arrange to meet in a nice park, museum or parent and baby cinema. Since learning I’m autistic I’ve found connecting with other neurodiverse parents and communities really positive, often using social media.
I also know parents who have felt pressure to be out more than they’d like to be or feeling they should take part in activities such as music and baby sensory classes for the sake of their child’s development. For a baby most things are new and sensory experiences. Watching out for your own overstimulation is more important for you both.
Time to yourself
The importance of ‘self-care’ is always stressed but in the early days and the first year, it can seem somewhat of an impossibility and yet another thing that should be on the to do list which you don’t have time for. I’m not talking lying around in a bubble bath, but anything that gets me a bit of needed peace, time alone or time to get something done that has been playing on my mind. Back when I was still being regularly woken by the kids I used to chastise myself for not going to bed earlier to get much needed sleep, instead choosing to stay up and watch TV. I found it so hard to go to bed though without having had some time alone, to wind down and do something that I wanted to do. As my twins have got older and more independent it has been easier to have more time to myself, but I think I’ve also got better at prioritising it and asking others to help me get it.
X: @SarahFisherPPIE
Sarah Fisher is a women’s heath advocate and Patient and Public Involvement advisor for health research and services.
Footnotes
(1) By perinatal I mean the period of time when you are pregnant and up to a year after giving birth. I love a definition!
(2) Hampton, S., Man, J., Allison, C., Aydin, E., Baron-Cohen, S., & Holt, R. (2023). A qualitative exploration of autistic mothers’ experiences I: Pregnancy experiences. Autism, 27 (5) 1271-1282. https://pubmed.ncbi.nlm.nih.gov/36325726/
(4) For information about support for autistic women during pregnancy and potential adjustments see:
Fox, D (2022). ‘Supporting autistic pregnant people’, National Autistic Society. Available at: https://www.autism.org.uk/advice-and-guidance/professional-practice/pregnant-autistic Accessed 19 June, 2024. And:
Henry, K. (2023) Providing Accessible Healthcare for Autistic Women. Available at: https://www.all4maternity.com/providing-accessible-healthcare-for-autistic-women/?sfw=pass1705574926 Accessed 12 July, 2024.
(5) Guidelines produced by the National Institute of Clinical Excellence (NICE) for the health and social care sector for different conditions and diseases. There are a number relating to pregnancy, birth and the postnatal period: https://www.nice.org.uk/guidance/health-and-social-care-delivery/maternity-services/pregnancy They can help inform you about the care you should receive and the underpinning evidence.
(6) Fisher, S. (2023) A quest for a physiological twin birth. The Practising Midwife, December 2023, 31-34. https://www.all4maternity.com/a-quest-for-a-physiological-twin-birth/
(7) Howell, M. (2009) Effective Birth Preparation: Your guide to a better birth. Surrey: Intuition UN Ltd.
(8) Hypnobirthing for Birth – Effective Birth Preparation Audio Tracks. Natal Hypnotherapy. https://natalhypnotherapy.co.uk/product/hypnobirthing-effective-birth-preparation/ Accessed 29 April, 2024.
(9) Grant, A., Jones, A., Williams, K., Leigh, J., & Brown, A. (2002). Autistic women’s views and experiences of infant feeding: A systematic review of qualitative evidence. Autism, 26 (6) 1341-1352. https://journals.sagepub.com/doi/pdf/10.1177/13623613221089374
(10) The Shitty Guilt Fairy. Hurrah for Gin. https://hurrahforgin.com/2016/07/07/the-shitty-guilt-fairy/ Accessed 2 May, 2024.
Comments