Story 2: Mamma I’m strange, my experiences of growing up as a girl on the Spectrum
Written by – D.F.H (Anonymity maintained)
Autism, a word associated with stereotypes such as a spotty teenage boy obsessed with trainspotting, or an aloof adult male who considers himself an island much like Will in Nick Hornby’s novel ‘About A Boy’. I would love to say that as a woman on the spectrum I don’t fit into those stereotypes, but I do. Although autism manifests differently in women, in my case it presents in a more masculine way. It may seem ironic to some that it took until adulthood for me to get diagnosed but like many girls I flew under the radar due to pre-existing medical conditions and masking.
At age 3 I was diagnosed epileptic. By age 6 or 7 I was missing out on daily life due to seizures. Kids were frightened of me and so were their parents. I got bullied regularly; a mother of a girl in my class told other parents to stop inviting me to their children’s birthday parties but the joke is on them, I never liked parties in the first place. My dislike for loud soft play centres, sensitivity to bright lights, and constant exhaustion was put down to the epilepsy. For many years I accepted this explanation, but certain things did not add up such as why I lined up my toys rather than playing with them, why I hated being touched, why the feeling of sand on my feet made me scream, why I would get overwhelmed in supermarkets.
Three weeks before my ninth birthday I had brain surgery to remove a tangerine sized piece from my left occipital lobe. This affected my social skills, fine and gross motor skills, hand-eye coordination, and everyday life skills. I was diagnosed with right homonymous hemianopia, a visual cortex disorder which means I have no peripheral vision. It was caused by the bad bit in my brain; apparently, I have had this all my life and I will never know what full sight is like.
During the recovery process I was told by health professionals that I would never read or write. My teacher told my mum I would never be on an academic level. An educational psychologist told me I should wear earmuffs in class to stop me from feeling different to the other kids. In typical aspie fashion I chose not to listen to them. With support from my parents, the Visual Impairment Team, and a tutor, I began to overcome some of the challenges. By my first year of secondary school, I had almost caught up academically and was beginning to overtake my peers, but I still had deficits in social interaction. I was aloof, often blunt, and unable to make eye contact; kids would laugh when I spoke my mind or took things literally. They called me a snitch when I saw people being unjust. I would cry myself to sleep because I didn’t understand what I had done wrong and why my classmates were so cruel. I struggled to make friends.
My secondary school seemed so big. The crowds between lessons and noisy classrooms gave me constant headaches. Fluorescent lighting seemed to burn into my soul. Spending breaktimes in a small, graffitied toilet cubicle seemed like luxury. Sometimes everything became too much; I would be unable to speak for tears and exhaustion. One time I dragged my fist down a brick wall to ground myself.
More worryingly, I had a skewed interpretation of sex and relationships which led me down dark paths. My assumption was that girls had to sleep with boys to be their friends and because of this, boys took advantage of my naivety. I started using sex as a coping mechanism but also to inflict pain on myself because I felt I deserved it.
I struggled with my GCSEs. I often misinterpreted questions or did not read them properly because I was anxious about the time constraint, despite having extra time due to my special educational needs. My mind would go blank and I would get overwhelmed or I would click my pen to soothe myself. My already low self-esteem worsened. I cut my arms because it was the only way I could deal with my emotions. I felt like no cared and I was unable to articulate the pain I felt.
I developed a strange set of interests. I started listening to heavy metal, I liked it because the extreme lyrics and epic guitar solos blocked out the world for a while. I learned all the words to the film Titanic even though it was 3 hours and 14 minutes long. I befriended a group of boys who I went trainspotting with on weekends. I had always liked going to railways with my dad and had been obsessed with trains as a child. I was spotted more easily than some of the trains due to my gender, but also because of my clothes – I would wear long gothic dresses and red lipstick. I spent all my money on pin badges for my extensive collection. No one could put me into a box – outwardly I was quirky but everything a girl should be. People could not understand why my hobbies were so unladylike. I started to rebel against societal standards. I refused to shave, stopped wearing makeup, cut my hair short and deliberately adopted masculine postures, sitting with my legs akimbo in a skirt just because I could, even if my mother disapproved.
At sixth form I thought I had finally found my place in the world, but this did not last. My group of friends went off to university and I found this change hard to adjust to. Then one January day I was all prepared to sit my mock exams and I got home after school to find out someone close to me had passed away. I became emotionally constipated. I could not cry, laugh, or smile. I thought I was crazy. I scraped through my A Levels.
At 18 I landed an apprenticeship with the NHS. I struggled to settle into my placement as the team I worked with seemed cliquey and one woman took a dislike to me. I felt exhausted all the time. My colleagues rolled their eyes because I was not acting “normally”. Although I despised work, I decided to use the money I was earning to give me a focus – I took up guitar lessons and found a professional therapist who specialised in autism. The first session was eye-opening. She told me straight away she thought I was autistic. I was relieved to hear someone professional say it. I started to come to terms with my past and began figuring out my identity. I realised in the process that I was confused about my femininity and sexuality.
My world was turned upside down yet again when the Covid 19 pandemic hit. My job changed when the ward I worked on was shut due to staffing and bed requirements. Staff from other areas came into my department and we were shifted around like pawns on a chess board. I was put in situations I had never dreamt of – I saw sick and dying people everywhere. Amidst it all I started thinking about getting an autism diagnosis. My therapist recommended a diagnostician whom I contacted immediately. He sent three questionnaires – an autism and Asperger’s questionnaire, sensory processing differences questionnaire, and RAADS questionnaire. I filled these in and sent these to him along with excerpts from my diaries.
On my 21st birthday I had a diagnostic assessment over Skype. I was asked questions to which I gave honest responses. I felt exhausted, overwhelmed, and relieved when it ended. I was autistic and someone had finally written it in stone. Within two weeks I received a report containing the outcome of the assessment. I learned a lot about myself that day. Turns out I use few facial expressions, my tone of voice rarely changes even when talking about upsetting subjects, I fail to maintain eye contact, and I don’t use much body language aside from fidgeting when nervous.
I had no difficulty accepting my diagnosis given that I had collected so much evidence about myself over the years through anecdotes and personal observations, but it changed my life for the better. I feel more confident now, knowing why I am the way I am; I accept that I will never fit in and I have learned to love myself. The responses I have received from others have been mostly positive and some people have even asked me to explain more about autism. I told them my story but put emphasis on the Dr Stephen Shore quote “once you have met one person with autism, you have met one person with autism”.
For other women and girls going through the diagnostic process I urge you to speak out about your experiences as you are not alone. The more awareness raised, the less autistic women get dismissed and the easier it will become for young girls to get diagnosed.
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