The fifth anniversary of the Autistic Girls Network group on the 17th December has given me cause to reflect upon my own child and their experience of being neurodivergent.
At the age of 5, they had been at school for 3 weeks.
They were extremely excited to be going to school – to follow their big sibling, and all that they understood went with it.
Underneath they were extremely anxious.
But we as parents, and they themselves, didn’t realise that school for an undiagnosed but healthy and happy small neurodivergent individual can be where differences start to appear, labels start to emerge, and real issues can become embedded.
There were no ‘concerns’. But what if we replaced the word Concern with ‘Wonder’. I wonder if there is something different going on for this child alongside their peers? I wonder if they are experiencing things in a different way? I wonder if they might be neurodivergent?
Our Autumn-born little girl was gorgeously wonderfully individual right from birth. She slept through from early on, but once that routine was broken by illness, never slept well again. She hated travelling backwards in the car, but with a safe transitional object was really happy to travel to other places. She processed fevers really badly. She smiled early and often. She fully engaged with people she loved. She was unique in her approaches to play and language. She was totally different to her older sibling.
She was peaceful and brilliantly ‘behaved’, never having the tantrums that our eldest displayed from toddlerhood. She was well-organised, but incredibly messy, knowing at an instant where everything was – and it was usually packed in a small bag with a plethora of other seemingly unrelated items – a horse, a shoe, a lip balm, two lego bricks, a tissue and a tiara.
She was a wonderful physical risk taker, but never a rule breaker – climbing trees and being covered in mud. Often dressed as a princess. She danced with abandon. She sang. She watched her favourite episode of her favourite programme over and over again. She made up a whole new language aged 4 and taught it to us.
She played imaginatively, and played self-sufficiently. Her toys had the most creative names. She was hugely empathetic and noticed friends’ moods and feelings immediately and felt them strongly.
She always ate very selectively and repetitively, but well. Always plain and always beige, but from all the food groups.
I worked part-time as a parent, and starting at the different nurseries was a big barrier. When settled things went well – that happened at three different settings.
So, sending her to school, where she wanted to go, was a wrench, but a joy to see her so excited.
The first few days were incredibly traumatic. She had friends from ‘real life’ in her class – both boys – and would play with them, but others were a struggle. Playtime with the other classes was extremely difficult. At the end of the first week, she said that as she had now been to school, she wanted to ‘quit and get a job’.
The reception teacher, who was lovely, said she was quiet and shy but ever so clever. And as she was ‘practically perfect in every way’ she was given latitude to participate or not in the Reception-ey activities.
In the nativity, she got a lead role, but was in total meltdown by the end, and I had to take her home.
So there were many, many signs. But with intuitive adaptation by the class teacher, she eventually settled. Supported to find her own way, and with the lighter touch of the Early Years Curriculum, she found her own way once she knew how to navigate the people and spaces and places, and knew she would be safe.
Schools are required to track academic and even social attainment from an incredibly young age, but these ‘tests’ do not flag interaction and social communication differences. I can see how she was ‘missed’ at age 5. And there doesn’t seem to be any joined-up record keeping – outside of school there was one solitary Health Visitor visit at approximately age one. So, a child who struggled with new unknown, unfamiliar environments, with big eating differences, who didn’t sleep, who experienced big difficulties with transitions, who played very differently, who felt feelings very strongly and profoundly, who spoke only once she had mastered the entire language and then used sentences and vocabulary that far exceeded her chronological age, who preferred the contact of adults and older kids over her peers, was not noted anywhere. These are key indicators that a child may be autistic and are ‘Keeping it all Inside’.
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At the end of reception, the classes were mixed (it was a big school) and our child was removed from her friends as she was ’over dependent on them’. Her reaction was intense and powerful. A school ‘accepter’ became a school ‘refuser’ – her safety net had gone. Year 1 was only successful because she again, by chance had a brilliant, wonderful, intuitive class teacher who allowed her to come in 30 minutes before the other children, and have ‘important jobs’ to get her settled.
Some topics covered in the curriculum had profound impacts – The Great Fire of London created a prolonged and pathological fear which lasted for years.
We were remarkably lucky with Primary School by accident, and by our kid having exceptional individual teachers. And because the Primary phase has far more latitude to adapt than Secondary. There were difficulties all the way through though. School avoidance, stomach pains, headaches, meltdowns (as we now know them to be), adaptations made because our child was clearly hurting rather than hurting others. She never made any waves on any ‘radars’. She was noted as gifted and talented. She was nurtured.
And her older brother, a strong-willed, big, loud boy, was ‘pinged’ a few times as having additional needs. But never our peaceful, perhaps too compliant, daughter.
Years 5 and 6 were a huge struggle. Bullying by other girls led to the start of food avoidance. The school intervened and acted lovingly and accordingly, but the damage was already embedded.
And the transition to secondary school was a disaster. Fundamental. Catastrophic. Because there were no notes, not being on any ‘registers’, no observations of her differences, and we were blamed. She was blamed. For being a victim, for not having resilience, for something going on at home. For being shy. For being anxious. For not trying hard enough. For not pushing through. For not speaking out. They had never had this problem with a girl before. And so, it went on. Perhaps ‘reasons’ others have heard. And her eventual formal diagnoses of Autism, ADHD with the co-occurring but exceptionally dangerous, OCD, PTSD, GAD, potential ARFID and a ‘demand avoid profile’ were all laid bare.
It could have been so different.
What if we changed ‘monitoring’ of children to look for neurodivergence? What if we had and she had been made aware that there were differences, that she was not damaged, or failing, or wrong, but was instead simply a brilliant wonderful neurodivergent youngster – that the differences were just that? That we didn’t require a child to ‘break’ before help could be sought. Perhaps most importantly, that ‘autism’ is not a ‘label, and not a dirty word.
If someone had told us that she was possibly autistic – as they did when she was hospitalised aged 12 – I would have been shocked. As I was. It was not something that I had ever considered, because I ‘knew’ what autism looked like, and it simply wasn’t a girl. But that light bulb moment meant that I could find autistic folk to help guide our steps forward. And she could see that being autistic was who she was. And it wasn’t a bad thing.
If someone had wondered out loud if she may also have ADHD, I could have explored what that meant, and might have recognised it in myself sooner and been able to say ‘Guess what, I think I am too’.
We simply do not have systems – educational or health – that recognise healthy, happy neurodivergent youngsters and help create pathways to ensure that they stay that way. We do not join the dots and notice how vital this self-knowledge is. The systems fragment the ‘parts’ of neurodivergence, and force crises before support is in place. They put parents into conflict with ‘agencies’ when they are potentially dealing with an actively suicidal child. It is all seemingly about money, and not a child in a crisis caused by systems.
Part of this is educational policy – behaviour policies, forced curriculum, the decimation of pastoral support funding, the super size of schools, the removal of easy access to Educational Psychologists. Part of this is CAMHS and mental health funding – a youngster has to be utterly broken and reacting dangerously before they are even able to access waiting lists which are years long.
And part of this seems to be an attitude that difference is bad. Our kids feel this profoundly, that they are failing to be the ‘same’ as neurotypical kids in a neurotypical-designed world. In fact, ‘interventions’ and support are designed to be accessed by neurotypical children, and in many cases prevent those who are neurodivergent from receiving help that is appropriate.
So as my child starts to thrive again, in their late teens, I reflect back on what we could have known at aged 5.
We could have acknowledged that our (still) brilliant, wonderful, loving, kind, caring, smart, intelligent kid was neurodivergent, and helped them see their strengths and themself. We could have advocated with knowledge of what is harmful, and what might be helpful. We could have helped them navigate the rocky road of puberty and friendship from a place of self-knowledge and safety. We would have chosen a different secondary school for sure (2000 kids is not an ideal space for a child with hyperacusis and AuDHD)
Autistic Girls Network has been a safe haven for me. A place to ask for help and advice from others, especially the autistic members. But more importantly, it is a group challenging the very practices and understandings that hamper and hinder autistic folk.
By a longterm member of the Autistic Girls Network Group which you can find here. If you would like to donate to AGN to help support us in supporting young autistic people you can do so here via Just Giving.