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The Trials and Tribulations of a Life without a Diagnosis

I was born autistic in 1988 but no one told me I was autistic until the year 2019

31 years of growing up wondering what was wrong with me and why I was finding making friends so hard and navigating relationships all because I didn't know I was autistic.

It is a life I have since grieved for.

To be honest I found people bemusing. I knew I was different. Hell I got picked on for being different.

I remember I was not invited to parties in primary school. The kid coming in with the invitations and me watching everyone else get excited and me wondering what all the fuss was about.

I hated primary school. The only good memories I have of primary school are leaving. The teachers did not get me. The only one who had a soft spot for me was the headteacher. My year 4 school report calls me vindictive. I would have been 9.

I was not allowed to sit with my peers. I was always sitting by myself often in the art corner so I could not distract the others, or my teachers would sit me with younger children just to segregate me that little bit further. I made a friend in year 3. We were thick as thieves but I often found myself in hot water trying to copy her. (This was early stage masking)

I was basically written off. I remember once the headteacher coming into my class and the teacher was telling him how I held my pen funny. I just held it to see how comfortable it was. The headteacher was baffled and said “what does it matter?'' He told me not to worry, he held his pen funny too and he was the head of the school.

My parents went through a messy breakup lasting 3 years on and off. I was this little hot mess that did not understand why in handwriting lessons you had to write line to line when I would never write like that normally. It was illogical to me.

I was sent for a dyslexia assessment and diagnosed borderline dyslexic. There was no hope for me. My mum told them I was bored, they didn't listen, then they got my results and everyone was surprised. I did better than average and parents complained when I got higher than their child in High School.

High School was a game changer for me. Even though I was bullied terribly I loved the structure of it. I was big into sports and there was some kind of club every lunch and after school. I was made the Sport Captain in year 11 and achieved great things. I was the first and only person only to ever achieve an A* grade in Sports Studies.

I was comfortable there so did my A levels but my expectations and the teachers' expectations clashed massively. They told me to lower my expectations to E. Saying and E was an achievement. I was constantly asking for more work and worked my arse off. I had my sites set on a Russell Brick Uni. E's were not going to cut it. I needed B's.

I got a Bs and decided to do Geography much to everyone's surprise. I was expected to do Sports that was the thing I was naturally good at. However, geography fascinated and challenged me. Sports would have been the easy option for me. It did not really challenge me academically and I like to be challenged. Geography is ever changing because the world is ever changing and that fascinated me.

Now you may wonder if I had any traits pertaining to autism as a child. Well I did. I had many.

- I was obsessed with sports

- I did not know when to shut up (still don't)

- I really struggle with maintaining relationships. They require a lot of effort and if there are not 2 ways you can forget that friendship lasts but the same is true when they are too intense.

- I would not drink anything other than Pepsi for breakfast which actually got my parents into a bit of trouble with the dentist.

- I was addicted to chewing gum.

- I collected Pogs, Marbles, TY Beanies, addicted to my Gameboy, had no sense of danger, I was VERY FUSSY about clothes. I would not wear dresses or skirts or anything remotely girly. I was trackies and these would be certain brands or colours only.

- I had a comforter until the age of 14. I would suck my fingers and have this red rag which used to be a t-shirt.

- I was obsessed with motifs on t-shirts

- I would not sleep in my own room for a fear of the house going on fire

- I would have panic attacks/meltdowns at the thought of getting older and leaving school

- I used to always go missing in shops (thank god for the Police)

- All my friends were boys or tomboys

- My social development was not the same as everyone else's. Boys did not interest me nor girls, I didn't really get the makeup and high heels thing and I did not like sleeping over at other peoples houses and I avoided school dances like the plague.

My time at University was very turbulent. Especially the first three months. I couldn't settle and was trying to be the stereotypical drunk student that everyone used to talk about. I actually wanted to quit and said to my doctor I was scared about going to University because I would have to make new friends and I was hopeless at making new friends.

It wasn't until after christmas I found my friends. They all smoked weed and for me being friends with people that smoked drugs was not something I would normally do. However, they were cool and we had a laugh and there was playstation, beer and Monkey Dust. They were cool with me not smoking or doing drugs and never pressured me to do it and I never felt I had to, to fit in. They remained my friends throughout Uni and some to this day. They were the friends that would make sure you got in at 5am ready for your 9am lecture.

I got a 2:1 Hons from the University of Liverpool in 2009. The year of the recession. It meant my grand plans of getting the well paid job I was promised were delayed.

Problems with my mental health started during this time. I am a very intelligent person and operate best under pressure but at the same time I do not really like pressure. Luckily google was quite an enhanced search engine by this time. I used to search job interview techniques and in the end got pretty good at them.

I learnt with jobs it is not what you know it is who you know. Especially to get your foot into a door. However, employment was not really successful for me.

I used to be very naive and did not realise some offices are like school playgrounds. I struggled to navigate office politics and although I was told I had the potential to be a manager I was always turned down when I tried to progress despite being a diligent hard working employee.

In my 20s I was on antidepressants for suicidal thoughts and was really struggling to find a place where I fitted in. It got to a point where I even considered leaving the UK because I just did not know where I was going wrong. I now know this to be autistic burnout.

In my head I did everything right. Good grades, degree, excellent attendance and punctuality, worked to deadlines, multi-tasked, understood the company inside and out. However, I was always in trouble for what I deemed stupid stuff.

I was told in one job I was scruffy and needed to spend money upgrading my wardrobe so that weekend I went out and bought new clothes. I was picked on and treated differently to others. I wasn't held in the same regard and it was obvious when one day I left my phone on my desk. My phone was recording because I had my suspicions and I got to find out what people really thought of me. It was a revelation to say the least.

I was referred to counselling numerous times which was as useful as a chocolate teapot to be honest. I would say I don't fit in and they would reply 'it is good to be different' and I would plead with them and say it isn't normal to be this different.

I have been with my partner for 8 years and he always used to say you are like bi polar. Either really hyperactive and happy or really sad and angry there was no inbetween. I would go to the doctors telling them I had no energy and it wasn't depression and they would say 'I think we should try antidepressants'. Honestly MEDICAL PROFESSIONALS NEED TO LISTEN TO THEIR PATIENTS!

In the end. I was sent an autism quiz by a colleague. They sent it to the team and I took it for fun because that is how it was sent just as an interesting quiz and I scored High.

I then started to research autism and when I was referred to counselling they ran for pre assessment. I asked and that's how the ball got rolling. It was 14 months from that first conversation until I was diagnosed.

When I got diagnosed I was relieved. I was also very naive however, and thought it was finally the answer to all of my problems. When I disclosed peoples reactions made me cautious about how and who I disclosed to.

I was told 'my autism was mild and didn't really matter', 'I didn't look autistic', 'You are lucky you don't have it that bad'

I created an account on instagram and started following other autistic people. This is where I learnt most of what I know now. Covid shutting down the world was also a blessing in disguise. I basically had three months off work on full pay. It meant I could figure myself out without the pressures of masking through an 8 hour day with people I had nothing in common with (except 2 people).

In those three months I figured out who I was and I grieved for the life that could have been different but wasn't. I grieved for the friendships I had lost that I may not have had I known.

Being diagnosed late was in some ways a blessing because I was forced to act Neurotypical meaning I learnt to mask and blend and learn how to communicate. However, it held me back massively in my career and my diagnosis ultimately led me to decide to quit a job I had been in for 6 years.

I have had to start all over again but my new circumstances are better. I am allowed to advocate for myself and my new employer could not be more supportive of me. I may be paid 40% less than I was previously but I could not be happier.

See one big thing I learnt a while ago. Let me let you in on a secret.

Being; supported, valued, respected, listened to, treated fairly, looked out for and given an element of control is all free and worth more than any amount of annual salary!

Honesty and advocating has been the game changer to my success.

Now if people use the wrong terms I just correct them. I literally do not care. If someone says I have mild autism I tell them there is no such thing. It is OK to correct people. I am lucky I have managers who actually want to understand and colleagues who just let me be me and I am also gaining confidence I haven't had since I was 14. I am pursuing other things. Life is limitless when you stop caring what other people think.

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