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Neurodiversity: Life and Motherhood

Updated: Jan 24, 2023


I couldn't decide whether to write this blog as a GP [General Practitioner] or as a mum, but when I started writing I realised it had to be both.


There was no lecture on neurodiversity at medical school, just a page in my paediatric textbook. The signs of the common syndromes. Down's ,Williams, Edwards. Learn it in case there's a question on it and that's it, probably for our entire careers. The sum total of what you'd need to do for a human being with a neurodevelopmental condition. Spot it, give them a leaflet and wish them good luck. I don't think autism and ADHD were even a footnote. And no, I didn't train decades and decades ago; this was medical school in the noughties.

It took me a while to get my head around 'phenotype' and how to explain this to my patients: We can have the same set of genes, missing or duplicated or whatever 'error'; yet how they manifest as 'symptoms' can be very very different in different individuals. The difference between an independent life and one where you have to take each day as it comes.


The latter messes so deeply with my need to make a plan. I am the one who always takes the track I know well. Yet as a GP, I am the expert in navigating uncertainty, helping people make sense of what might or might not lie ahead.

I'm conscious of the fact that I'm an able bodied, lucky one that has never really had to navigate that uncertain path myself. My path is clear and well signposted. I can just wish the others luck through their treacherous journeys, safe in the knowledge that I can go home to surety and reliability. That is, until I became a mother.

Suddenly even well trodden paths looked less clear. Signs were muddled and street markings were missing. I was sinking under a tidal wave of fear: Baby loss, miscarriage, stillbirth. These words took new meaning to me and they hadn't even happened to me. The fear of them was enough to cut my breath short and fill my dreams with nightmares. Fast forward a few years and I am the doctor behind the desk and a fellow mum is asking me if her baby is OK. "Is it normal doc? She doesn't sleep. She doesn't eat the same things as my others. There's ADHD in my family doc..." The child looks happy. Smiling at me whilst she rifles through the boring doctors' papers on the shelf, flicking the clinic curtain, stamping on the scales. Child lacking a bit of discipline? Too much sugar, not enough sleep? These are only the 'helpful' suggestions shared from friends and family and neighbours and the bin men.


Now, I find myself on the other side of that desk with my second born. She never quite fits inside the 'box'. No milestone red flags, so not enough for a doctor to be interested and stamp her with a diagnosis. We don't want a diagnosis anyways; what does that get you but stereotypes and stigma?

Oh, but the constant worrying and wondering. As a baby, she didn't sleep for more than forty minute naps, come hell or high water. I remember falling on my bed with exhaustion, saying: "I give up lovely. I love you but mummy has to sleep now. " And finally when she started sleeping more, her eating was a hell to endure. Mealtimes were a war zone. White food only. Beige food OK. No meat, no chicken, only fish now, no, not fish! No veg, not even if hidden. When did picky eating become Avoidant Restrictive Food Intake Disorder? How do you know the difference? More reading, more discussing, more sleepless nights. Slowly realising that becoming a parent is the paediatric masterclass no medical school has ever delivered.

But doctor parent has to be the worst. To understand what we know, what we don't know and worse still, what we don't know that we don't know. That last point kept me up more than any other. I cursed medical school and google and Wikipedia and longed for that teen oblivion where the only uncertainty I had was what to wear on Saturday night. On reflection, learning to navigate the uncertainty on a personal level has been rather liberating for me. To let go of the 'plan' and focus on the here and now and living for today feels good and healthy.


My consultations are different now too. No more assuming a referral is all I can do. Together we now make goals and figure out how to move forward. The rule is that Mum is always right. If she can define the problem, maybe I can help find a solution: A child with autism who becomes a teenager who cannot sleep at night. We become problem solving detectives together. How do we support this twilight figure so he can achieve his aims through the school years? Or a toddler who won't eat or a school child who can't sit still... What can I do in ten minutes? I ask you, what can we do together in bite-size pieces? I'm only the sign-poster of information here. I try to hold your hand when real empathy comes from living it with you. There's so much to talk about! Ten minutes has long gone, "come back in three weeks." The disappointment on my patient's face is difficult for me to bear. But lately, I have a secret card to share; Cafélias. A new café where like-minded people meet. Where you can get more info, more support, more ideas. "Here's the link. I think it will help." If only not to be alone, you may well see me there after work.

 



GP Maman is a mother to three children aged 9, 4 and 5-months. She was born in Iran but grew up in the UK and her children are half South-African. She works as a General Practitioner in the UK and enjoys writing and advocating for her patients in her spare time.


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