Anxiety, Depression, Endometriosis and Teenage Girls with Autism
When I was five years old, every night I'd drag my Sylvanian Families duvet into the bathroom (I know, totally gross right), spend a couple of hours heaving into the toilet and then would finally fall asleep on the tiled floor. I think my parents caught me a few times, but it was a regular occurrence that went on way longer than it should have. I was spending my nights in the bathroom because I was anxious about school the next day. I wasn't bullied, I had friends, I wasn't finding the work too intellectually difficult, but I was nervous as hell. I'm pretty sure it got dismissed as general kid weirdness and that was that. I don't recall going to the doctors about it or even talking to anyone about what was going on, it was just a thing I did. By the time I reached juniors, around seven or eight years old, I was taken out of school for a week after having a complete melt down in the classroom because I just couldn't build my cardboard robot right. OCD symptoms began creeping in - at bedtime, I would yank my duvet up as close to my face as I could and pull my pillows in around my ears and cheeks, to stop mosquitos from attacking me. Signs of body dysmorphic disorder were beginning to show as well. When my cousin had her ears pinned back, I too believed I needed my ears pinned and so, for a good while, I slept with a dressing gown cord tied tightly around my head, hoping eventually my ears would grow into shape. Now at 28 years old, I've not only come to peace with my body, but seriously, my ears couldn't be any closer to my head - I literally have no idea what my nine year old self was seeing.
When I hit the first year of Secondary School, I was studying three + hours a night, painstakingly ensuring my homework was perfect, and then spending the rest of the evening worrying about whether tomorrow would be the day that I'd finally get bullied, or I'd get into trouble with a teacher, or I wouldn't be able to answer a question. At the weekends, I spent Saturday cleaning my room, as I was convinced the work and satisfaction of having completed a chore, would bring me fulfillment and happiness and a sense of righteousness - I remember crying throughout, feeling incredibly low, unsure why my life didn't feel enjoyable. By Year 9, I had stopped eating - I was living off an apple and a diet coke during the school day, and then had a cup of milk when I got home and picked at my dinner until I was in a position to throw it away. School was a cycle of continuous burn out, I worked myself into the ground, producing top marks and being a best friend, and then collapsed into a confused and exhausted mess, calling in sick to give myself a day or two to recover. By my A-Levels I was using my exercise bike religiously for two hours a day and would ensure I didn't eat on a Friday so I could drink a 20cl bottle of vodka that evening and not be able to stand up by the end of it, but still be skinny.
While now I am able to understand my mental health issues, reflect on them with and even step back from them if I am lucky, they have not left. Only this year I was being persuaded by doctors to take medication, was seeing a CBT counselor and a psychotherapist, attending mindfulness classes and unable to work full-time. My recent and conscious struggles with endometriosis only exasperated my mental health issues, yet with the unstable hormone and pain levels that endometriosis brings, I can't help but wonder whether there is more of a physiological impact on our brain-chemistry we are unaware of, that is affecting our well being.
What I am getting at is, these childhood tendencies don't just disappear. They grow as we do and sometimes, they become bigger. This week I attended the Mental Wealth Festival, hosted by CityLit and Books Beyond Words. My interest fell on areas such as depression, anxiety and vulnerable groups, partly due to my background in these fields but largely to do with the psychological challenges I see so many women with endometriosis face. Sandra Walker, one of the main faces of the Mental Wealth Festival discussed how early signs of childhood trauma are going unnoticed by parents, schools and society and Sarah Kendrick talked about the need for a mental health practitioner to be present in every school, to allow children to begin talking about everyday anxieties and bigger issues, in order for healthy mental health practices to develop at a young age and so we can recognise symptoms earlier.
More than a third of teenage girls suffer from anxiety and depression. How many of them are living, like I was, undiagnosed with endometriosis for seven, ten, twenty, thirty years - as so many of us have? How many of them can't work out why they always feel ill, why they're always tired, why they can't keep up with their friends, why their periods floor them for three weeks out of the month, why, unknown to them, their hormones are leaving them feeling suicidal? And how much is a possible undiagnosed chronic condition heightening the severity of mental health issues that have gone unnoticed in childhood, or indeed, are now causing them in adolescence?
At the festival, I attended a talk led by head teacher Sarah Wild and students of Limpsfield Grange School, a boarding school solely for girls living with autism. It turns out, autism is an area where yet again, females go unheard. Girls are frequently undiagnosed for years, leaving it until they are teenagers suffering from add-on mental health issues as a result of going for so long with a condition that they didn't understand. Sadly, many have never been diagnosed, resulting in adults who are now living not only unknowingly with autism, but with ongoing severe mental health issues like depression and anxiety.
The students and head teacher of Limpsfield Grange, frustrated about the lack of literature for girls with autism, have co-written M is for Autism with Vicky Martin. The book explores the life of a teenage girl, recently diagnosed and dealing with heightening states of anxiety as she reaches puberty. I've wondered before, in my work with homelessness and with female survivors of sex trafficking, what the impact is of endometriosis on these young, vulnerable groups, and if it is getting recognised at all? And then, whilst listening to the girls talk about the anxiety they feel when facing boys, crowds, homework and interestingly, not being listened to, I found myself wondering again - if these girls are going without autism diagnosis because society isn't paying enough attention, then how on earth would they get an endometriosis diagnosis?
1 in 10 women have endo and it's not a picky disease, it has to be affecting those with learning disabilities and mental health issues as well. I found myself not being listened to, being dismissed, being told it was nothing more than a niggling pain, and I'm a white woman living in a free society where I can voice my reproductive health concerns pretty openly, and I have no learning issues holding me back form communicating these concerns - yet I still wasn't diagnosed until I was 24. In addition, getting the right treatment is an ongoing battle with the need to be assertive and able to understand the treatment options available - are these girls' and womens' carers and families aware and able enough to support them in navigating this complicated system, if the girls themselves aren't?
What are we doing as a society to help girls recognise the symptoms of endometriosis, understand and manage the disease at a young age and get the right treatment? There must be hundreds of thousands of girls out in the world, suffering alone, enduring years of physical and mental pain, only to be diagnosed twenty years later, when the impact of this suffering has already dealt hefty blows to their mental well-being. Surely, with conditions such as anxiety and depression being so prevalent amongst teenagers, we should be looking to make known the conditions that can start when puberty does, and put the right support in from the beginning, so these girls don't have to suffer for decades at the expense of their physical and mental health. This information needs to be accessible to teenagers, teachers, school nurses and school mental health practitioners, so ignorance doesn't lead to neglect or misdiagnosis. Importantly, the materials should also be helpful and not fear mongering, and tailored to different age groups and needs. Children with autism can often become incredibly anxious about health issues, especially if they don't know what's going on, so it's essential that the information provided is clear, simple and as reassuring as possible, in order to empower the girls, rather than frighten them.
The girls of Limpsfield Grange are living everyday with autism and anxiety, yet confidently told us how they manage it - from animals, to walks, to bubble wrap apps (really), they have worked out a way to live their lives and cope. Living with endometriosis doesn't have to be any different, but we have to give them the knowledge and the power to be able to do this in the first place. If we are serious about changing diagnosis rate and the quality of life for women with the condition, and indeed, the overall mental health of the population, then we have to also reach out to the generations to come and the harder to reach communities, who don't have a voice or an awareness of the condition at all.
I'd like to suggest that we take a leaf out of Limpsfield Grange's book - if the resource isn't there, then let's create it.