Story 1: The journey through my autism diagnosis
Written by- M.M.D (anonymity maintained)
I was diagnosed at 21 with high functioning autism- the report was 18 pages full of the all the things I was inept at. In the report I found out I bounce when I speak, don’t give eye contact, and have an uneven prosody. I didn’t even know what that was. So here I am, thinking I blended in very well, I wasn’t an obvious Aspie… I think I was wrong.
I think it makes sense now- finding out I had Autism Spectrum Disorder provided the clarity I so desperately needed when I was younger. As cliché as it sounds, I always felt different, like a pimple that stuck out. I always had this uneasy feeling that I didn’t quite know what to do with myself, how to dress, how to act, how to have friends. “A wise head on young shoulders”, “too mature for the other girls”, “you’ll meet like-minded people at high school, sixth from, university”; I felt lost, and I clung to these phrases hoping that they would be true.
In some ways I was mature; I spoke the truth when I saw injustices, I did my homework, thought about others feelings and helped the teacher. However, now looking back, I was emotionally immature, and I didn’t know how to regulate myself emotionally or know how to have friends. I would like the look of a person and in my mind, she would become my friend. If we shared a common interest she would be my friend, but I would get protective, wanting that person to myself and feeling hurt whenever I got rebuffed. I always tried, I think this is where one of the misconceptions about autism lies. There is an assumption that autistic people don’t care and they like being “loners”. As a female on the spectrum and through others’ anecdotes this, in many cases, is not so. There is a desire to be accepted and this can lead to masking.
“Masking or camouflaging is a social phenomenon where autistic people learn, practice, and perform certain behaviours and suppress others in order to appear more neurotypical.”Anna Fay Hermandson [1-2]
I am still trying to unpick the masking I have done over the years. I developed a stutter over the winter term in year 1 of primary school because a girl in the year above had one- I wanted to copy her. I practiced phone call and face to face conversations in the bedroom mirror to calm my anxiety about the uncertainty of the situation and to this day I still do. I smiled and try to look at people in the eye, knowing this was correct thing to do. However, I often felt pained to do so. I use to dress like Nancy Drew because I wanted to be her. I thought if I wore a pair of trousers, or a top that a “cool” person wore, I would become “cool” too.
However, masking prevented me from being myself. I got lost in the person I thought I should be, not the person I was. I think this contributed to the low self-esteem. Therefore, I think it was easier to become reserved, quiet, and passive. I avoided having to be with people at secondary school by joining clubs (drama, glee, and book club), but still I wanted friends. Again, like primary school, the reality of making friends was much more problematic than the scenario I had envisaged in my head. Unlike primary school however, the relationships became more complex, girls wanted boys and this became a main talking point of conversations. All I wanted to talk about at 13 years old was how to get into medical school and was obsessed with the statistics of it all. I couldn’t talk about this, instead I got pulled into many confusing relationships and situations. I felt like I was drowning. I believe this in part may have led to the manifestations of my mental health issues, but I think regardless of this I would have still struggled. The lack of understanding self, my needs and wants pushed me over the edge.
In my teenage years my world began to crack, I struggled more with my mental health and anxiety crept in, consuming me. I think every teenager struggles with the pressure of the future, the uncertainty of growing up and living, but for me the fear of failure and growing up engulfed me, causing my mental health to crumble further. I don’t know when I realised I had a mental health condition, maybe it was when I overdosed on paracetamol, or when I would break down on the floor, or the pacing in circles for hours when anxiety became too much, or when I would rearrange my room in the middle of the night to create the order I needed. Regardless of when I realised, there was a problem that wasn’t being addressed. So, like many autistic females, the first place I went for help was my GP to seek support for anxiety. So off to CAMHS (Child and Adolescent Mental Health Services) I went.
Like so many other autistic females I found that the mental health services were not equipped to deal with all my “issues”. They tried to support my anxiety, social anxiety and depression separately, not considering there may be a potential “root cause”. Many of the sessions were focused on my childhood, looking at what could have gone wrong to create such a broken person. And yes, I did have difficulties with my upbringing, however I still felt something was wrong, there was something more to explore. I kept on being referred higher and higher up through this system until I couldn’t cope with it anymore, and my own strategies of self-help became more engrained to help deal with my mental health.
I became fixated on my weight and slowly, ever so slowly I developed an eating disorder. As this consumed me, the rest of the word faded away. I stopped caring about school and my future- all that mattered was the numbers, the calories and the weight going down. Here I stayed, stuck in limbo for two years worrying about only this, not caring about the heart palpitations, lack of periods, laxative abuse or the vomiting of bile some mornings. Again, the doctors became involved, but the regular weigh-ins became a game, I felt powerful against the ignorant doctors telling me to eat. In that moment, the eating disorder dissolved all the other feelings I had about myself and the world around me. It became my best friend and my worst enemy, but it was mine and I could control it.
I don’t know what exactly dragged me out of my eating disorder. Maybe the severe injury to the leg I obtained when I was 19 years old shifted my focus to another obsession: walking again without pain. I can safely say I am now an expert in the anatomy of the spine, knee, and pelvis. But this change in focus caused me to look at my mental health more carefully. I was struggling- I had already taken two years out of school and had offers from 14 universities (over a period of two admission cycles and one clearing cycle) to study physics, geography or natural sciences, but still the uncertainty and choices I had to make were too overwhelming. I couldn’t deal with it on my own.
So, I sought help. I found a woman who supported people with severe anxiety, depression, and social anxiety (now I know she specialised in women with ASD). In the first sessions, she asked me if I had ever considered that I may have autism spectrum disorder, and though she couldn’t diagnose me with ASD, over the period of a year we delved into my history from a new perspective. All I needed was this new perspective, a new angle to frame everything and all my struggles made sense. What she provided was a door, an opportunity to embrace myself as I was, understanding why I hated loud music, bright lights, restaurants, sleep overs, crossing the road, and driving helped me. It validated my existence.
With the knowledge I had, and the new tools she had provided me with, I went to university. Though I still struggled with anxiety and catastrophising, which led to restricting my food, I felt more strength and control to carry on and do well, I followed my passions and interests as it was the only way to keep engaged and happy. I hadn’t received a diagnosis, I was happy to know I had traits and the unofficial diagnosis of ASD was enough. But then the COVID-19 pandemic hit and I needed more support from my university, so I found a private specialist who put me on a waiting list for a diagnosis.
I got diagnosed at 21 with high functioning autism- the report was 18 pages full of the all the things I was inept at. In the report I found out I bounce when I speak, don’t give eye contact and have an uneven prosody, I didn’t even know what that was. So here I am, thinking I blended in very well, but now I am glad I don’t, because I can be me.
1. Egeskov C.The Art of Masking: Women with Autism [Internet]. Tiimoapp.com. 2019 [cited 21 February 2021]. Available from: https://www.tiimoapp.com/blog/art-of-masking-women-with-autism/
2. Hermandson A. Masters of Masking: Autistic Men Who Mask[Internet]. Tiimoapp.com. 2020 [cited 21 February 2021]. Available from: https://www.tiimoapp.com/blog/masters-of-masking-autistic-men-who-camouflage/
Leave a Reply