I wrote an article for a magazine called The Doula which was published in March 2019. Below is an extended version of that article about my life as an autistic woman and doula.
Growing up I felt like an alien. People and their behaviour seemed so very foreign to me and I spent an awful lot of my time confused and utterly convinced I was somehow living on the wrong planet.
Throughout my teenage years I bounced from one group to another trying to find my place in the world, doing my best to assimilate and force myself to become part of the group. Needless to say this wasn’t particularly successful. The world was a strange place for me, every day was hard work. The world was loud and confusing, I spent most of my time overwhelmed and unsure what was happening. I developed an array of unhealthy coping mechanisms because I needed something, anything that would make everyday life more bearable. My sensory regulation often involved isolation within my room in the dark, my family often joked how I was a vampire and only came out at night!
Fast forward to my niece receiving a diagnosis of Autism spectrum disorder, things suddenly started to fall into place. When I was growing up very little was known about ASD, especially ASD in females. It was never even considered. Getting a diagnosis was not an easy journey. It took me quite a while to even approach my GP. His first reaction was to laugh at me ( which he later apologised for) but eventually I got a referral and after the first round of assessments it was decided I did indeed need further tests. The waiting list was long and when the time came the assessment was not pleasant however when they presented me with the report that stated I was Autistic I felt validated. I wasn’t an alien, I wasn’t the rude, selfish and unsympathetic person I had been accused of so often. There were things we could put in place to make life much less uncomfortable for me and I didn’t have to keep fighting who I was.
Having my children was a huge experience for me. Labour and birth can be overwhelming for anyone but for an Autistic person the challenges can be huge. I wasn’t aware I was Autistic when I had my children, however I knew what I needed to feel safe and I knew what things were difficult for me. Explaining this was tough. In my first pregnancy I had no continuity at all, I saw many different midwives and ended up being induced on a hospital over an hours drive away from my home. Trying to explain how I felt and what I needed was so tough. The hospital was so overwhelming, the smell, the lights, the noise. The sensations of labour were not what I was expecting, trying to explain what I was feeling in my body was impossible for me. They kept telling me it would get worse and I should just accept an epidural now, I didn’t and I didn’t need one. I just needed them to listen. I hated being touched and I basically shut down and stopped communicating which is a coping mechanism for when I am very overwhelmed. This led to them giving me Pethadine far too late and me having a really tough job pushing my baby out. I discharged myself from hospital and swore I would never have another baby in hospital.
It took me 7 years to consider having another child.
My second experience was very different, I hired a wonderful doula and she ensured I knew my rights and had plans in place to help me stay calm and as relaxed as possible. She also taught me ways of coping with some of the overwhelming sensations that come with labour. Having a doula allowed me to ask many questions during pregnancy and feel like I could gather as much information as I needed. Autistic people often need to understand things deeply and the in depth questioning can be super annoying to people who do not understand. I had a wonderful home water birth, I felt in control and safe, my established labour was recorded at around an hour long and my daughter was born about 40 minutes after the midwife arrived! I was safe to move as I needed, make the noises I needed to and feeling safe allowed my body to birth quickly. Having this support from Georgie and realising what a magnificent difference it can make to a person’s experience was what inspired me to become a doula. Once my daughter was around 18 months old and we finished breastfeeding I completed my training.
The life of an Autistic doula is not always straight forward. Hospitals are a sensory overload and birth is an intense experience. Lights, smells, noises, not getting any sleep, being woken in the middle of the night. There were a lot of things to consider when deciding to become a doula. Could I really manage to support a person through one of the most important times in their lives? After lots of thinking and talking I decided that yes I can. Although birth is intense and a hugely important time for the family, as a doula it is a temporary state. Even the longest births are a moment in time and a life time of trying to mask my difficulties and fit into the mould of normality has completely prepared me to be able to do this. Now that may sound awful however when you break it down this is what many doulas do, you put your life and your needs on hold while you support a family. Now while I love doing this and it fulfils me in a way I never thought possible, it does take its toll. I am limited in the number of clients I can take on each year as I have found I absolutely have to have time off in between to recharge. My sensory overload after a birth is fierce and my family know once I am home from a birth I need at least another 48 hours to recover before I can function as a wife and mother again. Ideally I don’t want to speak to anyone, make decisions or have to get dressed as even clothes on my skin make me uncomfortable. Then slowly I start to recover and get back to my “normal” self. This is a sacrifice I have to make to be able to follow my passion.
From when I was pregnant with my daughter, birth became my special interest, learning about and discussing birth makes me feel happy. My intense focus and need to know as much information as possible allows me to gather knowledge at quite a pace, I have been called a “walking encyclopaedia” I am still unsure whether that was an insult or a compliment. I can often recite policies and research I’ve read on the subject and will be able to back up my point of view with reams of evidence and facts. I can be intense and relentless when talking about birth and becoming a doula allowed me an acceptable outlet for my obsession. I have, after years of practice at rehearsing everything I say before I say it, been able to construct ways of presenting information in a unbiased and non-judgemental way. This is essential as a doula, clients deserve to have access to all information and be confident they can make decisions without judgement from those supporting them. It is a skill that can be difficult to learn if you are not used to really thinking about how to interact with people.
As I have grown and learnt more as a doula, my passion and interest has only increased. I now consider myself a Birth and feminist activist. I volunteer as vice chair of my local Maternity voices partnership as well as the Positive birth movement. My life is absolutely and completely taken up with birth and improving maternity services for all. I have to concentrate hard on not allowing it to take over too much and have a negative impact on the other roles I have in life with my family. The hyperfocus can easily overwhelm and obscure any thoughts of my other responsibilities.
I am now learning to embrace my differences even more, firstly by being open about them! Being autistic is strength, it brings another dimension to the support I can offer people. It also makes me wonderful at supporting women and birthing people who are Neurodiverse themselves or have family members who are. I can help navigate a maternity system that is not set up to manage autistic women birthing babies. All my clients benefit from my full commitment to my job and my ability to process information.
Autistic people are often written off and assumed that we have nothing to offer the world. This is not the case, yes sometimes I need something a little different or I need to go about something a different way. I may experience things differently to Neurotypical people. However this can be managed and as long as I accept my differences rather than try to ignore or silence them I can function as a productive and valued member of society. Simple tools such as sunglasses, fiddle toys, headphones can make a huge difference, I am often found with glasses and headphones on before or after meetings, this allows me to minimise my sensory overload when I can, ensuring I can function at my best when I am needed. Supporting pregnancy and birth is my happy place, talking about birth makes me feel calm and engaged. I can focus and achieving things that I simply cannot manage when doing something else.
So don’t underestimate the autistic person in your life, support them, listen to them and watch them achieve more than you ever thought possible! Please do not hesitate to get in touch with me if you want to discuss things or you would like to collaborate on raising awareness of autistic birth and parenting.
I am going to post some links below to places where you can get more information and support on the things discussed in this blog. Also search twitter or facebook for the hastags #actuallyautistic #autisticbirth #doilookautisticyet
Agony Autie- www.facebook.com/agonyautie/
Autside education and training- www.autside.co.uk/
The girl with the curly hair- thegirlwiththecurlyhair.co.uk/