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Real Talk: Unveiling the Expectation vs. Reality Journey of Parenting an Autistic Child

by Sita Turner

young boy playing with lego

My child is not the child I expected to have. That's not to say I don't love every molecule of his existence or wish that he was anything other than the child he is, but it does shine a light on an uncomfortable aspect of motherhood: expectation vs reality. From the moment that second line appeared on the pregnancy test, and probably for a while before, a fully formed child appeared in my imagination.

My child would be one of those giggly, happy babies who could be soothed easily with a loving cuddle and a lullaby. He would enjoy walks around the park and old ladies would stop and comment on what a good baby he was. One imagery scenario after another played out in my head until the first few years of his life had already been set out like a screenplay in my brain. I can almost look back on them like they were real memories. The one I remember most strongly was when we would be at a wedding or celebration and my little boy would want to dance with me, smiling and squealing with glee as I spun him around or enjoyed a little slow dance with him and my husband. I had seen so many similar scenarios on social media, my baby would, of course, be the same.

Of course, part of the excitement that can come with early pregnancy is imagining just what kind of dynamic you will have with your child - this is all part of the bonding process that is fed by the rush of hormones flooding your body. However, when the media and social media bombard us with a two-dimensional idea of what children are like - smiling, happy, chubby little beings who stagger around unsteadily in nappies and watch the world go round contentedly while their glowing mothers push them through scenic parks in their prams - it's no wonder our expectation of motherhood is so crystalline from the start.

A 2022 study by Ciero Kirkpatrick and Sunkyoung Lee into the effect of social media, particularly Instagram on new mothers demonstrates that I was certainly not alone in having an unrealistic vision of what early motherhood would be like. In their study, which investigated the effect of Instagram on new and pregnant mums, they concluded that "idealised posts cause significantly higher levels of envy and state anxiety, which may be detrimental to mothers’ mental health". Even antenatal classes encouraged our group of expectant parents to plan out our ideal births and discuss what kind of parents we would like to be.

In my case, the reality was nowhere near the expectation. My son was born with autism which means that the fully formed child I imagined all those years ago has had to be dismantled and rebuilt many times over 9 years. I regret intensely that for the first years of his life, I tried to shoehorn him into the child I expected him to be. Numerous months were spent grieving for what I perceived as being 'lost' and then finally, I had to tear the blocks down and start again, allowing him to show me what my expectations should be.

One example of this was when I projected the imaginary scenario of the wedding I outlined above onto a real-life wedding of one of my oldest friends. There was a live band about to start, which my then 4-year-old son was fascinated by, and he took me to see all the instruments, naming them and completely ignoring my question when I asked him if he was going to dance with his mummy. The band came onto the stage, the drummer tapped them in and as the music started, the mother of all meltdowns began. So overwhelmed and scared was my son of the noise that he immediately started screaming and shouting, hitting me, kicking the stage and drawing a lot of unwanted attention from the other guests. Not wanting me (who was then pregnant with our second child) to get hurt, my husband directed him outside where we stayed all night. I missed my friend's wedding because he was too scared to go back in - at least it was warm! I cried a lot that night and for a few days after. But I see that moment as quite pivotal. That was the night I decided to wave goodbye to the imaginary child I'd had with me since birth. My child was not going to dance with me at any future weddings unless I listened to him and learned what he needed. And if that was to sit outside with me all night and perhaps dance alone under the stars, then that's what would happen.

Gradually the shoehorning stopped, and I have been able to step aside and learn from him, taking expectations out of the picture and following his lead. The more I looked, the more I learned, such as how he always preferred a backwards hug rather than one where he had to face the recipient, turning at the last minute and backing into our arms.

Now at 9 years old, he can talk me through his worries and needs in a much calmer way. I’ve had to learn to ignore media portrayals of motherhood and understand how to find my way. Parenting an autistic child is not always easy, but it has certainly been rewarding. We did go to another wedding 2 months after the first. This time we took ear defenders and asked the band to show him the instruments one by one. We danced our socks off until 11 that night.

Backwards Hugs I trace the constellations on your back - flecks of cocoa that dabble milky foam. My oyster shell arms enclose the pearly smoothness of your body, while fragrant hair steals the earthy roast lingering from the morning coffee. You say normal hugs trap you beneath breath and hair and bone and heat. I say these aren’t the hugs I dreamt of when I held you tight within my fulsome womb. My fingers comb for a lodging point on your craggy collarbone and I feel your phantom arms around my waist loosening – infiltrated lungs carry you away until I am forced to exhale you.

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