An Article on Girls with Undiagnosed Autism Spectrum Disorder
by a Mother of One
“She can’t be autistic!”
How many times have we been told this by well-meaning friends and family over the last few months? How many times have we, as parents, hesitated to answer? Up until a month ago, our 17-year-old daughter had been in psychiatric care for a staggering 18 months. Before she was sectioned under the Mental Health Act, she’d attempted suicide twice, spent more time in the school counsellor’s office than the classroom, and emotionally fell apart at the smallest things. She was sent to the Child and Adolescent Mental Health Services (CAHMS) who very quickly tested her for Autism Spectrum Disorder (ASD) using the then official diagnostic criteria. The results told them she was not autistic and so that was the end of that explanation for our daughter’s mental state.
Almost a year later, ASD was mentioned again by a different psychologist. This was after she’d ricocheted from Psychiatric Intensive Care Units to Open Units to General Hospitals and back again a total of nine times over nine months. No one seemed able to help her, and she herself seemed incapable of talking about the feelings that were causing the crisis in her mental health. Was undiagnosed ASD – or you might have heard it called Autism Spectrum Condition, Asperger’s Syndrome or High Functioning Autism – at the root of our daughter’s difficulties? And how was that possible when she’d ‘failed’ the initial assessment?
We ourselves were unsure and certainly any mention of autism to other people outside of hospital was met with a dismissive shake of the head; it seems everyone ‘knows’ what an autistic person is like, us included, and she didn’t fit the criteria. After all, our daughter smiles easily. She has close friends. She’s a gifted ballroom dancer. Sure, she’s always been incredibly literal, never understanding sarcasm or jokes, often observing new situations for a long time before joining in. But simply put, wasn’t she ‘too normal’, imaginative, and seemingly sociable to be autistic?
Despite the uncertainty, various psychiatrists and psychologists (a total of five who cared for our daughter across the many wards she’s been on) kept telling us that she was on the autistic spectrum, and yet they all continued to struggle to help our daughter. The hospitals either weren’t equipped with the preferred test (called ADOS) to formerly assess her – adolescent psychiatric hospitals shockingly aren’t obliged to have these tests – or she wasn’t on the ward long enough. As she was in hospital, CAHMS – who can carry out the test – wouldn’t because she was no longer under their jurisdiction. We despaired of ever getting a diagnosis. Was our daughter on the autistic spectrum or wasn’t she? And if she was – and it was important for her future care and therapy – wasn’t it standard practice to assess anyone as early as possible, even if previous initial tests had come up negative? She, and we, were left in limbo.
Specialist Autism Hospital
After a further eight months of little progress – and a further nine moves from ward to ward – our daughter was moved to a hospital that had just opened; a hospital that specialises in children with mental health problems and other difficulties, such as ASD. Finally, a psychologist with a wealth of experience and research in girls with autism met with our daughter, talked to us, asked us diagnostic questions we’d never been asked before and made her assessment. And, yes, we at last had the official confirmation that she – and we – needed: Our daughter is autistic.
I’d like to mention here something about resilience. It seems to be a buzz word at the moment: that we should all be teaching our children to be resilient to the challenges of modern life. It’s been a needling word for me. It’s suggested that I’ve not modelled resilience well enough and that my daughter hasn’t learned this vital life skill. But I’ve realised something – and I’ve an old philosopher to thank for it. ‘The Myth of Sisyphus’ by Albert Camus revisits an ancient Greek story about a man condemned to push a boulder up a mountain, only to see it roll down again, forever. The point Camus found most interesting wasn’t that he let the boulder go, or that he went back down the mountain and started pushing it back again. The point was the turning, when Sisyphus looked down at the boulder and chose to start again. The number of times I’ve fallen, my daughter’s fallen – the number of times anyone who’s ever struggled with their mental health has fallen – isn’t a reflection on resilience. Choosing to try again is what shows true strength. With this in mind, my daughter, tested so much more in her seventeen years than most people in a lifetime, has shown a humbling amount of resilience.
And now with a diagnosis, she has at last – and most importantly – come a little closer to being understood.
Autistic Traits in Girls
As soon as we knew the diagnosis for certain, many of her personality traits began to make more sense. Autism in girls does not manifest in the same way as it does for boys. The initial assessment that had come up negative was never going to be positive for her as it’s geared to recognise those traits common mostly to boys only. Autistic girls may lack similar social skills as autistic boys but girls can have the ability to hide it. They copy. They watch. They grow up through primary school seeming like any other typical girl.
Our daughter had friends. Yes, she never put up her hand in class and was reluctant to make eye contact – but we’d put that down to a sort of shyness. Yes, she was often repetitive in game-play and controlling in role-paly, but she seemed happy playing. In fact, compared with her two younger brothers, she seemed the more sociable, wanting a special friend or two to come back to play schools or do a bake sale (the organisation of both was precise). But being controlling (or bossy) is an indicator of autism in girls. Not joining in, or being quiet in class, is a sign of autism in girls. Repeating set play is a sign of autism in girls. We even learned that walking on tip-toes – something she’s always done – can be a sign of autism.
There were many other clues – signs of ASD specific to girls we didn’t know about – such as reading early and intensively; having a melt down over seemingly nothing (our daughter would cry for hours if I tidied her bedroom, even if it was just emptying her bin); retreating into fantasy worlds (our daughter had a disconcertingly ‘real’ imaginary friend called Sarah Jane up until she was six). There were in fact lots of little behavioural things we thought were just how our daughter was, which we’ve had to look at again with fresh eyes.
Perhaps it doesn’t matter. Perhaps it’s best not to give labels to children and young people – yes, people have said this to us too. But what happens to children left undiagnosed - or, a better description would be: unrecognised? Our daughter entered secondary school seemingly quite well-adjusted. But social interaction and the hierarchy become increasingly complex through teenage years. When someone is on the autistic spectrum, they struggle to ‘see’ the subtle shifts in expression, in tone of voice. They can often appear inappropriate or insensitive. Conversely, they are often highly sensitive. Our daughter is one of the kindest people I know, passionate about animal welfare, and often the first to comfort someone who is visibly upset. And yet, she can be completely blind to more subtle emotions. She has a tendency, for example, to persist in telling people information even when it’s clear to everyone else that they are too busy, too tired, not interested. She doesn’t recognise these clues which has led her to inadvertently offend or annoy her peers.
She actively retreated from her peer group aged fourteen. She changed school (an upheaval which she instigated because she felt so disconnected from her classmates) but it didn’t help. More and more we found her buried in fiction or dancing. She began to not eat. Her escalating anxieties prevented her from going to class. She’d swing between high-alert and apathy. In short, her mental health deteriorated. It’s extremely punishing to consider that if one of her suicide attempts had been successful, we’d have never understood what had brought her to such a dark place.
The Future for Girls with Autism Spectrum Disorder
Much research has been carried out in recent years into why fewer girls are diagnosed / recognised as autistic. It’s fantastic that this research is opening doors to girls like our daughter. Educating teachers, GPs, health visitors and the public at large is an ongoing steep, essential climb. I wonder even now, looking back at our daughter aged three (the age most boys with ASD are diagnosed), would a GP or health visitor have recognised her as autistic? She would have smiled her beautiful smile. She’d have talked to them if they asked her a direct question. She’d have seemed happy – she was in many ways happy. Would they have spotted that she walked on tiptoes? Would they have noticed her large, precise vocabulary? Would they have seen that she rocked because she was, in fact, anxious? I’d like to think yes. I’d like to think that articles like this one at least, might alert the public to the possibility of ASD in their daughters or nieces or granddaughters. I’d like to think earlier diagnosis / recognition will prevent the huge suffering our daughter has been through. I'd like to think CAMHS are improving their screening.
Her recovery is ongoing and not without a fall or two. As we catch up on what autism means for our daughter, she continues to struggle within an adolescent mental health system poorly-equipped to treat children with ASD. One which has taught her to only feel safe behind locked doors and left her institutionalised. We have to be thankful, though, for the (belated) diagnosis and for the more appropriate therapies we now understand she requires – such as sensory therapy as opposed to any talking therapy she’s been subjected to.
Autism isn't a disease or illness that can be reversed; it's for life. I for one, think autistic people are some of the loveliest people I know so why would anyone want to 'cure' it anyway? The more the differences in autistic brains are understood, the likelier the autistic person will have a healthier, happier, more productive life. And isn’t that what we all want for ourselves and our loved ones? Girls and boys. Non-autistic and autistic. To be understood is a gift. I hope one day soon, everyone will understand that a smiling, kind, bright girl who loves to read and dance can be autistic too.