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Autism and early motherhood: joys, challenges and missed opportunities

2 May 2024

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My name is Linda and I am an Autistic mother. I have the great privilege of working for Reframing Autism as a learning coordinator and parent educator. My areas of deep interest, which I pursue through my work at Reframing Autism and involvement in other projects and research, are motherhood/parenthood, parenting and Autism. I also work as a yoga teacher, postpartum doula and have a background in education and training. I live with my husband, daughter and labradoodle in our colourful little home in Western Australia.

The joy of motherhood

Motherhood has been an incredible experience. I have learned so much about myself and have grown in so many ways. It has been a joy to experience awe and wonder, guided by my curious and dynamic daughter, who has taught me more about life and love than I imagined was possible. Through her unrelenting self-advocacy and authenticity, she has given me the gift of self-awareness and self-compassion, as I have finally discovered my Autistic identity alongside her.

Missed opportunities

My pregnancy was simultaneously unremarkable and impossibly challenging. From a medical point of view, my baby was healthy, growing well in utero and, for the most part, my body was healthy too. None of the prodding, poking, blood tests or ultrasounds could detect the utter chaos that I felt. Although I didn’t have words for my experience at the time, with hindsight I can see that the experience of pregnancy put me into a state of complete sensory overwhelm. All of my senses became heightened or distorted. I could no longer tolerate the smell, taste or texture of most foods. The unrelenting nausea meant that, in the early weeks and months, I couldn’t even keep water down. I was hypersensitive to light, movement, scent and pain, needing to spend my days lying in a dark room, alone. My hyperemesis gravidarum (extreme morning sickness) was treated with medication and IV fluids, but no one thought to try to make sense of my experience which I feel was a missed opportunity for self-understanding and finding the support I needed.

"Although I didn’t have words for my experience at the time, with hindsight I can see that the experience of pregnancy put me into a state of complete sensory overwhelm."

Throughout my pregnancy, I had been fixated on the birth and what I could do to avoid an epidural due to my fear of needles. The intensity of labour left me unable to communicate, other than to ask for an epidural which turned out not to be as scary as everything else I was experiencing. In hindsight, my birth preparation was largely impractical as it didn’t include any meaningful strategies to support my sensory or communication needs, and in my hyperfocus on birth, I neglected to prepare myself for actually having a baby.

Early days with a newborn were intensely beautiful. I couldn’t believe that I had this tiny human to love and nurture. She amazed and delighted me, breastfed constantly and barely slept! Sleep deprivation, coupled with my instinct to keep her safe, stirred up intrusive thoughts of harm befalling her and my accompanying ritual of wishes repeated in whispers to keep her safe. I attended a mother and baby group for mothers at risk of postpartum depression, which was so supportive and nurturing, although I found it so hard to string sentences together while parenting (I still do!). I just wish so much that they had screened all of the mothers there for possible neurodivergence – another missed opportunity.

What the research tells us

Research shows that many Autistic mothers/birth parents experience challenges during pregnancy and postpartum, and that healthcare practitioners do not have the evidence-based resources to provide guidance and support to women during this time, or to identify women that would benefit from additional support due to unidentified neurodivergence. APEX – Autistic Pregnancy and Early Parenthood Experiences and Support – is an Aspect-led study of the experiences of Autistic birth parents in order to facilitate improved understanding, accessibility, guidance and support within the maternity healthcare system.

Making a difference

I was inspired to join the APEX Advisory Team so that I could share my passion for supporting parents and help to make becoming a parent a smoother journey for other Autistic parents. In hindsight, there were so many challenges that I experienced that could have indicated to healthcare practitioners that perhaps there was more going on for me than “just” morning sickness, labour pain or postpartum depression, but each of these opportunities was missed, leaving me under-supported and feeling like I was the only parent in the world who found everything so hard.

APEX has begun interviewing individuals about their pregnancy and early parenthood experiences. Thanks to funding by the Victorian State Government Diverse Communities Mental Health and Wellbeing Grants Program and auDA Foundation Community Grants, we are excited to be gathering experiences from participants with the aim of delivering resources to the Autistic community and healthcare workers, enhancing their practices and amplifying the voices of Autistic parents regarding their pregnancy and early parenting journeys.

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