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My Story: My journey to my own autism diagnosis after my daughter’s diagnosis

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From birth, my daughter knew exactly what she needed, and that was constant connection with me. I loved smelling the top of her head. I loved the way her tiny fingers would tickle me awake. I loved breastfeeding her, and we both got the hang of it. But after my confinement package finished, after my husband had to go back to work and after my mum had to go home, I was left with me and my daughter. And the worst sleep deprivation of my entire life.

I was diagnosed with Bipolar type 1 in my twenties, and after taking mood-stabilising medication that kept me alive, the first thing my psychiatrist told me was to protect my sleep. Now I was in my thirties and I had weaned off my meds so I could fall pregnant with my daughter and breastfeed her. The last thing I needed was a manic episode.

Navigating the early months

I had heard of magical babies who would sleep through the night – if the proud regaling of elders and their magical grandchildren are to be believed – but that was not my experience with my daughter. She nursed every few hours for the first three months, and I could feel my grasp on reality slowly slipping. My psychiatrist recommended weaning my daughter off so I could go back on meds. I couldn’t let go of our nursing relationship. My mother didn’t breastfeed me for long, not with the pressure to bottle-feed. I wanted more for my daughter. Somehow, I got through it, and napped during the day.

Things got easier, sleep-wise, as my daughter got older and when she started solids at six months. That’s when we realised her digestive system was incredibly sensitive. She got gassy very easily, and she was still mostly breastfed until she was one. She still needed to be nursed, rocked and bounced to sleep, and my husband took over the bed-time routine as often as he could, giving me a much-needed break.

“I think you are [autistic] too”

When my second daughter was born, my eldest daughter regressed. She loved her younger sister fiercely, and would try to hit her when I nursed her. It slowly dawned on me how different my younger daughter was. She was happier, calmer, slept better and coped better with life.

That’s when something else clicked. My elder daughter’s rigidity around her routines, sensory differences and meltdowns had to stem from somewhere. I asked my husband if he thought our daughter could be autistic. He nodded, and said, “I think you are too.” I stared at him, and realised he was right. My whole life, I felt out of step with most people and uncomfortable in my body. The lighting was always too bright and smells too strong. I preferred books over most people. My former psychiatrist didn’t think to assess me with autism because I worked so hard to pretend to be neurotypical.

Source: Vanessa Serpas on Unsplash

When my eldest daughter was three, she was diagnosed with sensory processing disorder. That explained so much about how existing in the world felt so intense for her. I had to cut the tags out of her clothes, make sure I had a spare change of clothes for her at preschool because she couldn’t stand being in wet clothes, and ensure I could cook up her favourite comfort foods. She trained herself to poop on the potty because she couldn’t stand the sensation of a soiled diaper. Despite that, she would struggle to use the toilet to pee until the very last minute. Her hyperfocus while she played and the demand of toileting was such a struggle for her.

A diagnosis, at long last

Source: Annie Spratt on Unsplash

When she was four, she was finally diagnosed with autism. I literally cheered when the head paediatrician confirmed my suspicion and she said, eyebrows raised, “Well. That’s not the usual reaction from parents.” I laughed, squeezed my husband’s hand and told her that now we knew for sure, we could apply for her OKU card, and at long last, she could get the support she needed.

I need support too. Ever since my first daughter was born, I struggled with my own sensory overload and interrupted sleep. I have my own childhood trauma from being undiagnosed and unsupported as a child, and later as an adult. I found a therapist I could talk to, and that helped me be a calmer mother. Private autism assessments are expensive, so I’m self-diagnosed for now.

For the autism community at least, self-diagnosis is valid. I take regular sensory breaks throughout the day to fill my cup, because the world remains too intense for me. All I can do is create safety in my home so my daughters can thrive, and teach them to advocate for their needs by meeting mine.

 

By Noor Abdul 


Noor Abdul is an #actuallyautistic advocate and a proud mother to a vibrant autistic daughter and a cheeky allistic daughter. She is passionate about raising awareness around disability and celebrating neurodivergence. Living joyfully with her daughters is her daily act of breaking intergenerational cycles of ableism.

From our team of purposeful, multi-faceted mummies. For editorial or general enquiries, email to us at hello@makchic.com.