• For some autistic women, a late diagnosis comes after their child’s, but I received mine five months before I became pregnant. (E+)Source: E+
My midwife says I have a high threshold for pain. That can’t be right. How could I better tolerate pain when I am less able to cope with everything else?
By
Kay Kerr

23 Aug 2021 - 9:28 AM  UPDATED 23 Aug 2021 - 9:28 AM

For some autistic women, a late diagnosis comes after their child’s, but I received mine five months before I became pregnant. In motherhood, the Internet has all the answers. You want to know how to tell Braxton Hicks from real contractions, or what labour is going to feel like, really? There are forums, blog posts, and studies for that.

When you type ‘autism’ and ‘childbirth’ into a search engine though, there isn’t a lot about how one relates to the other. You are more likely to find studies about whether birth trauma causes autism, or about how soon after birth you can spot the signs your child might be autistic. Autistic mothers don’t exist, not really. The term ‘autism mum’ isn’t even for us. It is a term used by mothers of autistic children, usually as an identity tied to the hardship of parenting someone like me. 

The first obstacle is that in the eyes of many, the existence of one negates the other. How could I really be autistic when I have a job, a Twitter profile, a partner, and then a baby on the way? To me that sounds like, how could I be hungry when I also have a bike? The figures say one in 150 Australians are autistic, so you have to think some of us are going to be parents.

Pregnancy happens in the first real month of trying, but still feels as though it has taken too long. With a brain like mine, a lot of things feel this way

Pregnancy happens in the first real month of trying, but still feels as though it has taken too long. With a brain like mine, a lot of things feel this way. The year is shaping up, I tell myself: one of transformation. I spend the next eight months in bed. I am so violently sick I burst blood vessels around my eyes, framing them with new red freckles. And I am sick so often the enamel wears away from my teeth. Hyperemesis gravidarum is sensory hell. 

As a child I would often scream, “Don’t look at me” when I was injured or humiliated. I would  retreat, sometimes to my bedroom, other times further still into the wardrobe, as the room itself felt too cavernous a space. I wanted to step out of my feet, leave them in my shoes and take the aching somewhere private. It is called shutdown, I have learned, and the bigger the feeling, the less I wish to be perceived.

With the first contraction, labour sees to it that my retreat is swift. I cannot embody myself and endure this pain. To be optimistic, I could say I transcend the pain, somehow rising above it. But it is more truthful to call it a kind of sinking, quiet as a stone.

When my daughter is born, I am surprised to find I am still in the room. Hours have passed since I last inhabited my body, but a silent baby is enough to bring me back. She finds her voice once the cool air hits her skin.

When my daughter is born, I am surprised to find I am still in the room. Hours have passed since I last inhabited my body, but a silent baby is enough to bring me back. She finds her voice once the cool air hits her skin

My midwife says I have a high threshold for pain. That can’t be right. How could I better tolerate pain when I am less able to cope with everything else? This ‘threshold’, I later learn, is common for autistic people. But I wonder, is it measured from the point where someone starts to experience the pain, or to show it?

Once the baby is here, she won’t allow for any shirking or sinking. There is nowhere to inhabit other than the place that feeds her, holds her, rocks her and calms her. To eat freely again is as close to euphoria as I could imagine on a wet Sunday afternoon, crumbs dropping in the sink and on her perfect round head. Food fortifies me against whatever havoc unbalanced hormones might wreak. Well, sometimes. And sometimes I have to dig my nails into the softness of my thighs to endure another minute of skin on skin, touch that can turn from intimate to intolerable in a matter of seconds.

As more is required of me in this new role, I come to understand I am at times too present, and others not present enough. My brain is wired for extremities, and it is only in finding one it retreats to the other. When she cries, it is all I can hear, all I can taste, until I am able to help her settle. My concentration is singularly focused, and when I burn out I need more time in bed than others too. The implications echo in my peripheral: my baby is too attached, too reliant, too used to me being there. Motherhood, much like the neurotypical world, doesn’t feel like it fits. But I come to know we are both doing the best we can.

It is more comfortable to bring parenting into autistic spaces than to bring autism into parenting spaces, but neither nurtures both identities as much as I would like. I can mask and muddle through, but it begins to feel like another way of making myself unseen. And as this small person grows, I don’t want to model disguise. Small acts of resistance bloom where I wouldn’t have dreamt of them before. A lifetime of masking autistic traits did not leave me well-equipped for standing out of line. Requests like, “She doesn’t like hugs, how about a high-five?”, “We don’t do parties, how about a play date?” and “Can you turn that music down please?”, may sound like nothing. Living them is the most conspicuous thing I have ever done.

In the doctor’s office, as my now four-year-old is immunised, she scrunches her face and shuts her eyes tight. Her hands squeeze mine as firm as any adult grip. 

In the doctor’s office, as my now four-year-old is immunised, she scrunches her face and shuts her eyes tight. Her hands squeeze mine as firm as any adult grip. I sense her leave. So quiet, the nurse comments. So well-behaved. It feels like the start of something I can’t quite grasp and definitely don’t like. The complimenting of female compliance. Thank you for not burdening us with your cries. It is okay that she doesn’t, I want her to be exactly how she is, but I console her as though she does because I know the pain is the same. 

When she opens her eyes, she looks surprised to find herself still in the room. We talk about where I go when I’m in pain and whether she might do the same. I hope she understands, and feels understood. She changes the subject to Freddo Frogs (I did promise). While she eats the head off the smiling amphibian, I vow to always bear witness to her pain. Or, if she’d rather, she can take it somewhere private while I look after the body left where she stands: her eyes, her mouth, her skin, the feet in her shoes.

For more information on support for adults and children who have been diagnosed, or are in the process of being diagnosed with Autism Spectrum Disorder (ASD), visit thespectrum.org.au

 

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