Changing the Face of Autism

Elusive Autism in girls: I had seen one paediatrician, one educational psychologist, three psychiatrists, multiple therapists, and required at least three Crisis Home Treatment Teams before my Asperger’s was spotted.

Some of my diagnoses included Irritable Bowel Syndrome, Stomach Migraines, Depression, Anxiety, Anankastic Personality Disorder, Borderline Personality Traits, and general mood instability. I do not argue that some of those diagnoses were correct, but what I lacked was an understanding as to why I had so many stress related difficulties. No amount of Cognitive Behavioural Therapy could take away the great anxiety that built inside me, and if I managed to relieve myself of one anxious trait it would simply drive itself into a new. I dropped out of school at 14 and could barely leave the house. I remember how momentous it was the first day I managed to walk 200 metres from my front door to post a letter, and how inconceivable it was that at 16 I managed to go on a bus alone ten minutes up the road. Agoraphobia haunted me for many more years and my undergraduate university years were mostly spent in my rented room, waiting on friends to deliver me lecture notes and supplies. For my third year dissertation I wrote about the Extreme Male Brain Theory in Autism, and whether the empirical evidence supported it. I was drawn to the topic, but never once considered myself on the spectrum; my view of autism was very much dictated to me by the media’s portrayal of very stereotypical males who had bizarre obsessions and very rigid behaviours. I was 22 and had been in Art Therapy for around six months when my therapist cautiously approached me with her observations. She told me that based on how extreme and chronic my anxiety was, and the way that I interpreted my emotions and read others, she believed I may have Asperger’s.

In the years following my diagnosis my life changed considerably. I can now proudly say that I never avoid leaving the house because I am too anxious. Finding out I had Asperger’s meant I was able to understand my anxiety better; I had never considered that I was sensitive to the sensory information that overwhelmed me when I was outside and around other people, nor that I struggled to make eye contact and converse naturally. It occurred to me that my whole life I had been playing the social mimicking game, learning exactly how to fit in, monitoring my every movement, until one day without realising this became too exhausting. After getting my official diagnosis in 2012, in true Aspie fashion I studied everything I could about Autism. I began my own blog to collate together my own personal experiences with the research I was finding, in the hope that I could also find women like myself, and who knew how many more there were out there?! Our stories are all so worryingly similar. We have all struggled with mental health, misdiagnosis, abuse, and late identification, and yet many of us to look at seem the opposite of autistic, we can make eye contact, small talk, we have friends and families, and our obsessions are so ‘normal’ they spark no concern from others. Despite this we all still struggle with the core impairments, no matter how well we cover up these we still struggle with repetitive and stereotypical behaviour, we still obsess and find it hard to shift from our fixations, we still struggle to know how to communicate with those around us, and we nearly always misinterpret our own feelings and those of others. It is no surprise that in my most recent study, conducted as part of my PhD on autism in females, women with autistic traits who hadn’t officially had a diagnosis suffered with almost double the number of mental health conditions compared to males with a diagnosis. I plan to continue my journey to discover more about this hidden population, why we have been missed and how this has impacted on our health and wellbeing, in the hope that one day females will not be at a disadvantage and can be supported in childhood as they should be.