‘School become unbearable for her. It was as if everything around her intensified tenfold and life was just too much.’: Mom gets candid on daughter’s journey with autism

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“When you give birth to a baby you wait to hear that first cry in the labor room, hoping, wishing that every medical check comes back clear, everything from hips to hearing. You wait with bated breath as your baby hits each milestone from the first tooth to sitting up to crawling, talking, and walking. If you are fortunate like many parents, you believe that when your child is on the correct percentile and continues to meet each developmental milestone that you are doing all the right things—but what we didn’t see or understand were the little things we now know to be autistic traits.

man holding his new born daughter
Courtesy of Verity Shuttleworth

Imi never slept well, but like most babies, we thought it was normal. She barely ever napped in the day either: she was too interested in the world to ever really switch off, and getting to sleep at night took hours and still does. Socks used to be ripped off and labels had to be cut out of clothes, which we now know to be a part of sensory processing disorder, but at the time, we thought she was just being an awkward toddler. Night terrors and frequent meltdowns were all signs that we missed. That everyone missed.

Imi’s behavior may have been challenging, but she was a salacious learner, she picked things up incredibly quickly and was obsessed with jigsaws and puzzles; she would complete one after the other from as young as two.

She learned to read and write long before she started school and had read most of the Harry Potter books by the time she was six. She used to eat books for breakfast, but reading before bed used to electrify her mind rather than send her to sleep—we never understood why reading seemed to have the opposite effect on her.

little girl looking at the camera
Courtesy of Verity Shuttleworth

What we now know to have been her special interests kept the family busy, and we were all exhausted as we tried to encourage her need for learning—from arranging a sleepover at the natural history museum in London, to visiting a Tutankhamun exhibition when all she talked about was Egyptology from morning until night, to traveling across the county at weekends so she could attend extra sessions at schools for the gifted and talented. It was clear Imi was gifted: people always described her as bright, and it was obvious she was ahead of her peers in most subjects—we were and still are, incredibly proud of her ability to absorb information and remember facts like no one else I have ever met.

We had no idea it was autism, but at around age 7, we noticed her challenges with friendships. Imi didn’t handle it well if friends cheated when playing games, and she just didn’t have the ability to compromise, so if someone didn’t want to play a game her way, then it was no way. She saw everything as black and white so just couldn’t manage playground politics.

We noticed that she saw everything incredibly literally and in black and white, making it more obvious why she excelled at subjects like math and history, as there are clear answers so it was either right or it was wrong.

little girl holding a spider
Courtesy of Verity Shuttleworth

This carried on through years 3 and 4, and at her last parents’ evening in year 4, her teacher said, ‘Next year, don’t focus on the learning stuff, it’s the social side that she needs to focus on. Have the sleepovers, have the playdates. Imi needs to spend more time with her friends.’

Then the COVID-19 pandemic hit, and like many parents across the globe, we were thrown into homeschooling whilst trying to hold down stressful jobs and navigate a global pandemic. It was a horrible situation: most days started or ended with tears, and it was a case of just trying to get through the day. Imi refused to be taught by us. She hated that we tried to ‘tell’ her what to do, and she couldn’t understand our way of teaching. We decided (in order to save our sanity) that she would need to complete the work independently and anything she couldn’t do, she would just have to leave. What we saw was that she finished her schoolwork most days by about 10:30 a.m.—she literally flew through most of it but then spent hours alone in her room.

I think the transition back to normal life, school, and the start of puberty literally catapulted her autism into the air, and we could no longer just think this was just her quirks. She started her periods at just 10 years old, and it was like a switch flicked overnight. She could no longer handle the sights and sounds that she had managed all her life, school become unbearable for her, and she was experiencing extreme overwhelm most days. It was as if everything around her intensified tenfold and life was just too much.

girl looking at the historical building
Courtesy of Verity Shuttleworth

I didn’t know too much about autism, but during the pandemic and while on many walks, I had listened to a few podcasts that had gotten my mind whirring. Things started to slot into place, and it all started to make sense.

I raised my concerns with the school, and they were in agreement. Now to try and get a diagnosis.

Imi has been on a waiting list since June 2021, and I can only describe the last 9 months as being intolerable. As her mask has started to slip, her episodes and sensory processing have become all-consuming. Everyday tasks from getting ready for school and swim training have become almost impossible.

I can’t quite describe the feeling of seeing Imi fade away bit by bit as anxiety and autism have taken a hold of her. It impacts every moment of every day, and for all the amazing things autism brings, it has been a very upsetting and challenging time with little to no support from professionals. We have had to navigate this new terrain by ourselves. We are on waiting lists for a diagnosis, to see an occupational therapist, an education psychologist, and a pediatrician, and so far, we are yet to see anyone. We are trying to balance Imi’s sleep difficulties and sensory processing disorder while trying to keep her in mainstream education and motivate her and encourage her to not let the autism and anxiety eat away at her.

sisters taking a photo in the woods
Courtesy of Charlotte Palazzo

I am attending course after course, I have spoken to more professionals than I care to think, but none have been able to help, so we simply have to wait. In the meantime, as a family, we walk on eggshells as we are always seconds away from a potential grenade going off while trying to manage behaviors that we simply don’t have the tools to deal with. We think Imi also has Pathological Demand Avoidance, which means she responds to everyday demands to the extreme: I can no longer ask her to get dressed or brush her teeth without an explosive outburst.

Her constant screaming and shouting at us can take its toll, and trying to balance what is bad behavior, what is autism, and what is being a tweenager is a tightrope we are always walking. How do we set boundaries and rules when she hates any demand but provide her warning and notice of any activity so she can mentally prepare? I am yet to understand how to do the two things simultaneously.

The system in the UK is overstretched, under-resourced, and underfunded and most support comes from local charities. Our local autism charity @space4autism has been brilliant, offering a safe space for Imi and training and education for me. It has been an invaluable resource, for which I will be forever grateful because, without it, we would have been completely lost and very much out of our depth.

sisters sitting down on a hike
Courtesy of Verity Shuttleworth

We speak about autism with positivity in our home, we encourage people to truly accept neurodiversity and that our world really is a better place when everyone is allowed to think and behave as they wish, but we have a long way to go, and it is so important that children on the spectrum get the support they need so they can flourish and grow in this world.

Just after Christmas, we started an Instagram page for Imi’s art, partly as a way for her to promote her art, to encourage her to use art as a coping mechanism, and to help raise awareness of autism and what an invisible disability can look like. You can view Imi’s art at art_autism_and_me

Imi is due to start secondary school in September, but we are yet to have secured a place at the school of her choice, so we face the battle to provide her with the education she deserves. Imi is unbelievably gifted and is a beautiful young girl, she deserves to be listened to, to be understood, and to learn in a way that works for her.

girl with autism's paintings
Courtesy of Verity Shuttleworth

We are her biggest advocates, and we will continue to fight so she shines bright and makes a mark on this world just like Albert Einstein and Andy Warhol did. The world will always need unusual thinkers, and that’s what makes Imi and every person on the spectrum so special.”

girl with autism taking a selfie
Courtesy of Verity Shuttleworth

This story was submitted to Love What Matters by Verity Shuttleworth from Macclesfield, Cheshire, UK. You can follow her journey on her Instagram here and here. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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