A long, drawn-out game of disorder and medication bingo with doctors and mental health professionals epitomises the last few years of my life.
I have only recently been provisionally diagnosed, pending further assessment, with autism and attention deficit disorder - despite a multitude of obvious and persistent difficulties consistent with classic presentations of both conditions since childhood. It has been a whirlwind of catastrophic downs, wrongful medication and multiple diagnoses defined by gaping holes and inaccuracies. At twenty-three, I am beginning my life all over again.
Studies of autism are overwhelmingly male focused. Autistic characteristics are gender-stereotypical and autistic diagnostic criteria is based on a male-centred characterisation of symptoms. The point at which it became both obvious and necessary to alter research and training has long since passed - for not only doctors and mental health professionals but also parents, school teachers and others in regular contact with children. Simply not enough is known about autistic presentations in girls, even less so where the profile is demand avoidant (which mine is), and the consequences are devastating. A one-size-fits-all approach cannot be taken towards such a wonderfully diverse disability; the breadth and variety of the autistic spectrum itself is far from being fully understood, before you even introduce gender to the mix.
As women, we are navigated by the realities of patriarchy in our everyday lives. We are conditioned to both conform to and further perpetuate it. In my seven years of active feminism, I have identified and fiercely fought against its obvious presence in my own life - but it was enshrined in my healthcare. It was woven into the fabric of my education. It seeped through in the words of those who judged me for symptoms I could not control. How are women and girls expected to compete with a system that has such an unrelenting grasp on every aspect of our lives? Particularly those aspects that are so fundamentally important to our overall wellbeing and success.
My school teachers, for example, were quick to point out the inconsistencies between my demonstrated abilities and the grades I was achieving - and whilst they could all identify this, none of them married that to an illness or disability of any kind. I was often, unfairly, labelled lazy, problematic, frustrating, irresponsible, unreliable – the list was endless... Autistic though? In need of genuine support? Unfortunately not.
Looking back with the knowledge that I have now, every tell-tale sign was there. In-fact my symptoms may as well have put a party hat on, blown a trumpet and done a dance on the desk. It was so glaringly obvious that it pains me to have lost so much of my life when such basic knowledge could have changed things so dramatically. This was not something no one had ever come across, indeed there were other students with autism and ADHD/ADD in my school - yet no-one could identify it in me.
The brick walls did not stop with school either – I have also fought against a myriad of very traumatic experiences in my professional life since. My difficulties have consistently fallen on deaf ears, and in my five years of professional experience I have never received a single reasonable adjustment in the workplace - despite, at times, almost begging for them.
On one particular occasion, following a discussion with my employer about attention deficit disorder - specifically the trouble I had reading and digesting large quantities of information at once – I was put solely in charge of reading and responding to mass correspondence. This is not only ableism in its purest form, but patterns emerge from the lived experience of women with invisible disabilities. There is an automatic presumption that women in particular with invisible disabilities are lying or are otherwise using illness as an excuse to receive special treatment – when they are in fact only looking for an accommodation they are entitled to under the law.
Much like every other pubescent girl, my formative years were plagued by gender-stereotyping. More specifically, the behaviours I was displaying were often spoken of in quietly misogynistic ways. I lost count of how often my symptoms were put down to my hormones, but I never once heard the hormones of my male counterparts discussed as freely – unless of course it was to excuse their sexually inappropriate behaviour. I was incessantly gaslighted for my autistic presentations and my sensitivity to noise has always been scoffed at and invalidated. Would we ever behave in such a way towards a diagnosed autistic person experiencing sensory overload? No – but I was not afforded this understanding because insufficient knowledge and a basic lack of tolerance, rooted in patriarchy, impeded a life-changing diagnosis for me.
Owing to that lack of diagnosis, people have had years to build perceptions of me based on behaviour that no one knew was attributable to autism. I now must work doubly hard just to receive the same respect and understanding for my symptoms as someone who was diagnosed in childhood. My sensory issues have been ridiculed and belittled for almost my entire life – the likelihood that they will ever be viewed as sensory overload or treated with the seriousness they deserve is slim; and this joins a long list of disadvantages autistic women face in late diagnosis where our patriarchal system has failed them.
The presence of patriarchy in childhood healthcare and education comes at a cost to autistic girls that they cannot afford; both as children and as they progress into adulthood. We can no longer passively accept the reality they are facing. Neurodiversity is but another intersection in the fight for equality and patriarchy remains until we free all of those shackled by it. In a world designed for neurotypical men - I beg you, wherever possible, to show up for neurodiverse women and girls.
Written by Kelly Given