This article has taken me months to write. Self- doubt, anxiety and what I call the bathroom towel syndrome have all taken over (I’ll explain more about that later). Welcome to the world of the autistic adult; Mother, Woman, Midwife.
Like many women who are autistic I went through life always knowing I was a little different. I was one of the lucky ones, many people appeared to like me, I managed to flit between groups in the playground, but I never really felt as though I fitted in.
I was obsessed with music, always dancing. That was my way of coping with what was really going on. I managed to find that one role model I could learn from, to be my confidant and guide. Many autistic girls are not so lucky, they find themselves without friends and are often secluded and bullied.
Autism is a neurological difference, the cause of which is not fully understood. Research is continually evolving; we do know that people with autism see the world differently to those who we refer to as neurotypical. There are many myths, untruths and misunderstandings surrounding it. Historically it has been thought to affect boys more than girls, think Rain Man and Einstein, these are the poor examples often given. We’ve also been wrongly told that having the MMR vaccination, being an older Mum, taking pain relief and SSRI’s (a form of antidepressants) all cause us to have autistic children.
There will always be debate around autism and as an autistic adult I am interested in opening up the conversation. The current data states the ratio for every 4 boys diagnosed only 1 female will get a formal diagnosis. The data for girls is wildly underestimated due to what is known as female camouflage or mimicking behaviour.
Last year aged 44, I finally got the confirmation that I would have been diagnosed as having Aspergers. The diagnostic manual now classifies autism as Autistic Spectrum Disorder (there is dispute around this terminology). The journey to this diagnosis was a long one which also resulted in my daughter being diagnosed the year prior. Following her diagnosis, I went through the journey of grief, blame and despair. When I came out of that cycle it gave me a fire in my belly to do more, I wanted to advocate and bring awareness of the autistic woman.
I started my Midwifery training in 2007 and qualified as a midwife in 2010. During these 12 years of my midwifery career I have never been taught about autism. Only recently have we started to become more aware of learning disabilities and training has commenced in this area. However, this is somewhat concerning; the two are often being interlinked and this is not the case. Autism is not a learning disability.
Some individuals, however, may have a co-existing learning disability. Many women like myself do not, we have degrees and academic roles. Some may struggle with face to face communication, forced eye contact can be very distressing. Other women are often sadly misdiagnosed: due to what is called ‘masking’ these ladies are diagnosed with eating disorders and mental health conditions due to their autism being overlooked, and many autistic girls and women are sectioned in assessment and treatment units.
Having done an article search online it makes for very sad reading, the Royal College of Midwives have no articles regarding autistic women, and in fact there are no positive research articles currently available.
I had my children when I was aged 25 and 30, and both experiences were very different, but both have left some trauma within me. Every woman has different autistic needs, for me the environment is very important. I have a sensitive sensory system which means light, noise and touch are all very difficult. A long induction for pre-eclampsia in my first pregnancy resulting in being in a bright theatre surrounded by strangers was really traumatising. Two things will stick with me from that birth, thinking I was dying as I started shaking uncontrollably following an epidural top up, and thinking I was never going to walk again hours after delivery when I couldn’t lift my legs off the bed. My second birth was quick and shocking, another induction and within minutes of my waters being broken she was on her way. My senses were totally overwhelmed, I was overwhelmed. I didn’t want her near me, I couldn’t cope with the sensory overload. A doctor had come into the room and shouted at the midwife for not examining me, and that will always stay with me. I didn’t want my baby skin to skin – the thought of her being slimy and bloody made my skin crawl.
This is where wrongly it was thought children developed autism as their mothers were ‘refrigerators’, unable to care or love their children. Nothing could be further from the truth.
So, what about the bathroom towel syndrome I spoke of at the start? For many autistic women our social battery can drain very quickly. My community midwife used to tell me off for the house being spotless and everything being ‘just so’, but what she didn’t realise is that my home is my safe haven. It makes me anxious when people visit and even more so when busy community midwives were late for appointments. My home being ‘perfect’ was another form of masking my autism. Some days however, the bathroom towel syndrome takes effect. I can be so drained from human interaction and over stimulation that I can realise hours after having my shower that I am still sat in my towel! Some autistic women talk of ‘using up their spoon allowance’.
How can health professionals make a difference? With the roll out of Better Births and The Long-Term Plan (NHS) there is scope to make a positive change.
Knowledge and understanding is power. To be able to support autistic women and their families with the transition to parenthood midwives need training. Training that is inclusive and that has autistic women’s views at its core. I have heard from many brave women who tell me they were never asked if they are autistic or have a hidden disability, but this needs to be a core question during the booking process. Many women have been traumatised during their birth as their fundamental needs were not understood or met. Every single autistic woman is different, just the same as in the general population. There needs to be understanding and compassion but without training this cannot be achieved.
As caregivers and supporters there are easy adjustments that can be made by midwives to enable a more positive experience for the autistic woman and her family. The environment can be adapted with ease, communication can be person-centred, with the awareness of the discomfort of forced eye contact. The limitation of physical contact and minimal changes of staff. Being aware that many autistic people have what is known as face blindness, we may have seen you before, but we may not be able to place where it was, even if you’ve only been out of the room for your dinner break. Another key aspect is the difference in pain perception, autistic women do not use the same facial communication and we can sometimes appear ‘blank’ this lack of expression must not be mistaken for lack of pain, although we often have a very high pain threshold.
We need to see autism as a positive neurological difference whilst also being aware of the difficulties many families face due to spectrum of the condition.
There are some really inspiring women who are at the forefront of changing attitudes and bringing awareness of the Autistic Spectrum. To midwives, I would urge you to undertake autism training and to my fellow autistic women be brave and voice your needs.
Jackie Herbert-Valentine is a midwife who is passionate about autism support. You can find her on twitter @cupidhearts1.
Resources and further reading:
If you’ve ever given birth, researchers at the University of Cambridge would be so grateful if you would consider taking a survey about your experience of pregnancy, childbirth and parenthood. The aim is to understand how both autistic and non-autistic parents can be better supported.
If you’d like to take part, here is the link: https://cambridge.eu.qualtrics.com/jfe/form/SV_9LewVFGHxiXvDbT