19 JANUARY 2022

My Journey to Diagnosis & Beyond

by Lily

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People who receive an ASD diagnosis later in life often report feeling so different as a child, as if they spoke a different language to everyone else. With the diagnosis giving them understanding and a sense of belonging.

I, however, have experienced the reverse. As a young child, I genuinely thought it was normal to go to bed with 100 different worries every night and that it was normal to seek reassurance for the same worry a billion times. No one told me that this level of anxiety for a child wasn’t normal and so I thought that anxiety was just a normal part of life, which I would come to accept. As a child, I thought it was normal to hate being touched by strangers and that every child required their hair to be done in a precise way, and if it wasn’t I thought every child experienced the same level of pain and discomfort as I did. How was I to know that this wasn’t normal? It was the way I experienced the world, and I couldn’t help it.

Yes, I did feel special as a child. I thought I had magic powers (like Matilda). Matilda was different to other children and in a certain way I sensed that I too was different, but I couldn’t put my finger on what it was. I believed that any child with a good imagination constantly made-up stories to escape the reality of the world they’re living in. I didn’t think playing this role-play game every day was too different, it was how I got through the day. I thought everyone also played these games and wore a mask portraying a different character every day.

By the time I was around 12/13, I began to realise that the high levels of anxiety were not the norm, and that most children didn’t get as stressed as I did about certain situations. I was shocked at how carefree other children were. However, I simply accepted that maybe I was just an ‘anxious’ child and this period would pass. I told myself that my struggles and differences were not too extreme because I was coping. I mean, I thought I was. 

It was only when I reached year 11 that others noticed that I experienced challenges that weren’t typical of children my age. My internal state hadn’t changed much, and I still thought everyone else experienced the constant anxiety I did. I guess the only reason I was suddenly acknowledged by teachers was because my body knew better than my mind did, and my body knew that I wasn’t coping, so my body communicated that. I experienced fatigue, dizziness, fear of food and rashes. However, I was blissfully unaware that what I was experiencing was symptomatic of my deteriorating mental health. I was confused as to why my body was behaving in the way it was. The attention I started receiving from teachers made me question if maybe the level of anxiety I felt was not normal because everyone seemed to think that if I lessened my workload then maybe my physical symptoms would alleviate. I guess it made me quite angry, why did it take a physical decline for me to get the attention I so desperately needed? 

People were lenient in year 11, it was put off as simply a bad mental health year. When year 12 came along I was expected to bounce back to how I was previously – before I started to display my unexplained symptoms. But my eyes were opened. By then I realised I was different because of a summer camp abroad. On this camp I saw the way my peers reacted to the change of scenery, and I compared their reactions to myself, and I realised that I needed help because no one else seemed to be so overwhelmed with all the activity and changes that they were essentially crippled with anxiety and uncontrollable crying. I wasn’t aware enough to realise why I was uncontrollably crying all the time; I had no idea, and it was scary. This experience along with how my body reacted in year 11 made me realise I needed help and my struggles validated, this new desire to engage in help led to assessments and eventually to being diagnosed with autism. Meanwhile in school I wanted to stop masking and I needed my struggles validated but people had no patience for what I was going through. To be honest, I understand why they would have no patience because by then my physical symptoms had thankfully passed and as far as teachers could see I was just a shy girl in school who claimed to be ‘struggling’ but gave no reason as to why I struggled and displayed no behaviours that suggested I was struggling. It was because I was masking, no on one saw how painful it was for me to sit in a classroom and be mute with a smile on my face and I did not know how to communicate it. 

I am 20 now and to be honest I still don’t fully understand my diagnosis. I feel as if it really came out of the blue. Once diagnosed I was discharged from the NHS mental health services because they claimed I didn’t have any mental health difficulties, I was just autistic and with time once I had come to understand myself I would slowly find my strengths and weaknesses and find my place in the world. 

However, this didn’t happen. I was just a girl with a very scary label that I knew absolutely nothing about. What did happen was the way people (I mean my family and teachers because I wouldn’t dare tell me friends) responded to me. I was greeted with lots of apologies and well-wishers telling me that I must come to them when I struggled. But what did that mean? I struggled every day. I didn’t understand how everyone felt that I had changed, I was still the same girl it’s just that now I had autism. 

It was suddenly okay for me not to get the train and bus. It was suddenly okay for me to cry and panic. It was suddenly okay for me to skip queues at airports. My family apologised to me for expecting me to be hugged and kissed on demand. I wasn’t labelled as fussy or a princess anymore. I had no idea what was going on. It felt like one day I was spoilt and weak for not coping with the pressures that everyone else faced and that one day I was rude for not hugging my family or ungrateful to suddenly the next day where everything changed. The next day I was so strong and brave for getting on a train, I was brave for going to a new place and I wasn’t rude if I didn’t hug my family, I was knowing my needs. I went from being weak and spoilt to being incredibly strong. But I didn’t understand because I didn’t change – I was still the same person. 

It was hard for me to fit into this new world that I suddenly found. I felt like I experienced an identity crisis because I didn’t know who the real ‘me’ was. I had expected to just get on with it for so long but now I suddenly didn’t have to get on with it and it was so confusing.

Yes the diagnosis did free me in a sense, and it has helped me a huge amount. People are so much kinder now, so much more patient and understanding. I am not forced to stay in situations now because everyone else does but I am allowed to leave or go somewhere else because I am believed. People believe me know when I say I find a situation difficult. 

This came as a huge shock and honestly even three years post diagnosis I still don’t understand it. When I go to a theme park and I can skip the queue or when I can get to choose my seat at the theatre, I question why am I getting this special treatment? I almost feel guilty. I feel so incredibly privileged in these situations, and I wonder how everyone else copes. A recent example is in the summer me and my family went to a theme park, and I skipped the entrance queue. I felt so guilty for doing that because I felt ‘fine’ but my mum told me that everyone else feels ‘fine’ and that no one else stands in the queue feeling as if they are going to pass out because the floor is bouncing, their heart is thumping and their brain is vibrating with all the poisonous messages. This is what happens to me when I queue and skipping it allows me to avoid this sensation. However, because I spent 17 years of my life believing that everyone else experienced these symptoms and that I was weak or spoilt for not being able to manage, I began to believe that suffering is a part of life. 

However, the diagnosis taught me that this is not the case and that I do have a disability, meaning that I find struggle in situations other people may not struggle in. The struggle is not normal and is not a part of life that people must learn to accept. Know the struggle is raw and painful and there is help out there. It just sometimes upset me that it took a diagnosis for me to be believed. I wish you could say you struggle with something and be supported regardless if you have a ‘reason’ to struggle with it.

It has taken time and I would say that I am not even half-way to understanding what being autistic means to me. But what I am teaching myself, is that my autism diagnosis isn’t who I am. No my name is Lily and autism can explain certain aspects of my character that maybe other people don’t understand. My autism diagnosis reminds me that I am not weak for struggling in situations and my neurodiversity tells me that it is not the norm to struggle in these situations, so I should not just have to get on with it – I can ask for help. So, my autism diagnosis has empowered me to ask for support and not be ashamed. Yes I am more aware of my struggles now because I have the diagnosis and yes sometimes the awareness that the struggles are a result of my disability make me feel so angry and alone but the diagnosis has made my life easier because I receive more kindness and this has enabled me to focus on and explore my strengths, my hobbies and more.

The Author

Lily is a university student, who lives at home with her gorgeous golden retriever Oliver in England.
Lily enjoys spending time outdoors in nature with her friends and dog. She uses writing as a means of expressing herself and has slowly become more open about her experiences and ASD diagnosis.

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