As one of the contributors to this season’s collection, Dazzling Colours of Calm, where I talk about my son Alex’s difference from neurotypical norms and his path to ASD diagnosis, I found myself wanting to say much more – about other autistic children I have come to know.  I especially want to tell you about one of them.

Clare[1] is a very different kind of autistic child; most assume autistic people are generally male. Girls are rarely diagnosed early because they mask incredibly well[2] – there are genetic studies showing reasons why this may be (and the Dazzling Colours of Calm book of short stories and essays goes into depth about them).  It’s also suggested to be because girls are brought up from the earliest of years to be cooperative, giving, and thoughtful of other’s needs[3]: the cultural expectations of femaleness in many societies.  Autism has, as one of its components, an extreme awareness of surroundings and people, which is why so many autistic children seem either hyper-stimulated and jumpy or extremely stressed and withdrawn.  It may follow that girls pay a good deal of attention to expectations placed on them as children, norms and roles that they learn as they develop[4].  Two of my adult female autistic friends, Myrtle and Jane-Jo say they felt this pressure acutely growing up.  Myrtle wants to know why she was “made” to play with dolls and told not to use Meccano, and Jane-Jo refused to wear skirts because they weren’t practical; only trousers and shorts, with pockets, were practical.  One of them is a teacher of geography now, the other a mum of three and a solicitor, the main breadwinner. Both felt they were fighting against a very vocal wall of expectations on women, that as autistic, they absorbed doubly.

When I met Clare at a playgroup before my own son could talk, her father was with her, as her mother found her exhausting. Clare was a sort of autistic that some people recognise: she paced relentlessly, she talked to herself constantly and she had lots of repetitive gestures she performed in order and often (known as ‘stimming’, a self-soothing mechanism). Other children at the playgroup got out of her way as she was tall and definitely going where she was going; not stopping for obstacles.  She did this all day, her dad said.  Her mother worked from home as a PA, so it was hard to get peace to work and Clare could only attend Reception for a small portion of the day as she was labelled ‘disruptive’.  She didn’t have her diagnosis then; that took a further 5 years of fighting (it’s harder to get a girl diagnosed, even if her markers are clear – she was incorrectly labelled with ADHD for a while). She also found direct light painful and wore wraparound sunglasses all the time, the type you send away for when you have very bad migraines and need to cut all refraction and glint.  She looked a bit fearsome. Wild-haired, fisted, angry.

The other children in the group who were later diagnosed as ASD paid her little heed except to move out of the way if she was coming.  She sat down next to my son one day, after what I was told was about three hours of non-stop pacing and talking (she was telling To-Do lists and labelling things around her).  He looked over a bit warily in her direction as she was a known source of noise which usually distressed him, but she was cross-legged and quiet.  So he carried on building a train track until it was in front of her.  Then going past her.  Then he ran a train on it.  Then he gave her a train. Unprecedented, sharing of toys, I nearly fell off the wall I was sitting on, watching.  He put it in her lap.  She left it.  So he put it in her hand. He knelt next to her and carried on making his move slowly along, with a gurgle he used to make in his throat, which was his ‘choo-choo’ noise, I think.  Slowly she leant forward and copied. For 15 minutes, side by side, and without crashing trains, they ran a very orderly and silent service, with an extra track built, sometimes in parallel, with his and hers trains rattling past at the same time. Then she gave him his train back and went over to her dad and fell asleep on his lap.

Apparently, she had never played with another child ever, in any way.  She didn’t acknowledge them. When I saw her dad at subsequent sessions, he was as tired and worn as ever, but he told me an interesting thing. He had been so stunned at her sudden playing, he had brought her a copy of the battered old wooden train set they were using at the centre.  She was drawn to it immediately and in parts of every day since, sat quietly and made complicated track and train arrangements in silence and peace.  Her mum got to work in these intervals. She threw all the dolls and pretty cushions and unicorn teddy bears out of her bedroom and cleared the floor.  It was now all track, that mustn’t be disturbed unless you wanted a noisy repudiation. It would then be replaced painstakingly. She would play as many hours as she paced.

She is now 13, taller than me, and loving the lockdowns. She can go out and walk in the park with her dad with fewer people: more train time.  Trains are straightforward, people are not. She didn’t become consciously aware of her autism until her diagnosis – before then she knew she was different, that not all children found light and clothing labels physically painful; that they interacted according to rules she didn’t quite understand, but that they seemed to just know.  A lot of her life was about trying to figure out the Rules – of every situation. From when she was very small.

She told me, when I asked if I could speak of her here, to tell you all that what she used to talk to herself about all day were the Things You Had To Do Right or …bad things would happen.  Look after daddy, look after little brother, make breakfast for the boys, do the washing up, wear the right clothes for work, put make-up on before you leave the house, what do I make for dinner, does this make me look fat.  Her mum had been horrified to realise her daughter had been internalising her own under her breath patter as she rushed back and forth over the house in a stressed children/ job/ shopping/ argh kind of way. It was what had made her start to work from home.  But Clare had gotten worse when her mum stayed at home.  Clare, incredibly observant and bright at 6 years old, thought her mum had been sent home for breaking the rules, and only by constantly reminding her own self of them might she survive.  She didn’t really know what she meant by that. She ended up with no time for anyone and anything else, reciting the rules came to feel so important.  The accidental train-play seemed to break the circuit and let her rest.  The rules still mattered – and still do, she still frets if she looks fat (she’s slender), and she still feels the world sees her as female but flawed, unable to follow the expected female patterns of behaviour she sees everywhere  – but she has hobbies and interests of her own now.  She wants to work designing trains, or failing that, in a signal box when she’s older.

This is only of the amazing children with neurodivergent brains that I know. It is truly so, that if you’ve met one person with autism: you’ve met one person with autism. They are some of the most rewarding people I know, and some of the most honest. I hope this small glimpse at neurodiversity has made you curious about our new season collection.  There’s so much to learn about others, always.

 

 

[1] Name changed – all of her story told with the permission of her and her family, for purposes of helping others understand autism in girls.

[2] https://sparkforautism.org/discover_article/are-girls-with-autism-hiding-in-plain-sight 

[3] https://www.tandfonline.com/doi/full/10.1080/08856257.2017.1312797 – an examination of social norms in female friendship groups and wider society where autistic girls camouflage.

[4] Kreisner ad White, 2014, quoted in a previous citation: If girls are expected to show greater sensitivity in relationships, their perception of negative feedback to non-conforming behaviours may be perceived more strongly than for boys, and in turn may lead them to hide autistic characteristics through modelling gender-appropriate behaviour.

 

Colouring in: how gender bias impacts the diagnosis of autistic girls