Yep, I’m actually doing this. My hands were actually shaking while I was typing this. But as it’s Autism Awareness Month, I thought there couldn’t be a better time to share the story of my Asperger’s syndrome diagnosis…
So many people would associate the 1st April with April Fool’s Day. But for me, the 1st April marks the first anniversary of the day that I was diagnosed with high-functioning Asperger’s Syndrome at the age of 25. After years and years of being a complete outcast and an anomaly, there was finally an explanation as to why I was as lonely and isolated as a kid and why I behaved in the ways that I did. Getting my Asperger’s syndrome diagnosis was a relief. It explained why I’d struggled so much through life and helped me understand myself a little better.
For so many years, I use to mimic people to fit in. I was misunderstood and often mocked by some of my family members. I ended up alienating so many people throughout my life. I always struggled to maintain friendships because I couldn’t comprehend social interaction. I couldn’t help but feel that they’d been so many chunks had been ripped out of my life. I felt I’d been denied an enjoyable life and that it’d been a complete sham.
Here’s a bit of background on Asperger’s. It’s a neurological condition which affects an individual’s ability to socially interact and communicate with others. It also means they have trouble making and maintaining friendships and relationships. It’s also known to result in anxiety and depression in some cases.
I always knew that I was completely behind when it came to social etiquette. I find social interaction confusing and difficult a lot of the time. When I was little, my mum initially took me to get tested for my hearing and lots of people noticed I had delayed language skills. This was because I wouldn’t say a single word as a toddler.
School was always such a turbulent and often traumatic time for me. I found school extremely tough and struggled to cope due to my then-undetected social anxiety and Asperger’s, which exacerbated my negative feelings and suicidal thoughts.
I remember I used to be really tactile with all the other kids in the class in primary school and always got into trouble for being disruptive, even getting taken out of lessons. A lot of the teachers throughout school even behaved really vile towards me. One of them even branded me ‘horrid’ when I was 6 or 7 years old. Other times I’d just be punished and sent to another classroom.
It got a million times worse during secondary school though. I was bullied badly on a regular basis, both physically and verbally. I was mainly bullied by boys but the girls would get in on it as well. I remember being filled with dread and was terrified of going to school. I used to end up going out of my way to fit in, wearing the same clothes as them. Instead they’d throw coke at my hoodie, for example.
If they weren’t spitting in my pencil case or on my jumper, they were thumping really hard in my back or throwing food at me. Even my so-called female ‘friends’ turned against me. They often used to force themselves on a smaller table so that none of them would have to sit next to me and I’d be on my own. That’d make the rest of the class pick on me even more. I look back on my days at school and feel like I definitely struggled to connect with other people and ended up alienating them. It’s the reason why I’ve always continued to be skeptical about letting people into my life.
When I got to sixth form, it was really tough. Everyone was so cliquey and often very bitchy that it often felt like I was in a real-life version of Mean Girls – so many stirrers and backstabbers. I wouldn’t actively participate in lessons and hated speaking in front of the class or ask for help was when I got stuck, especially in A-Level English.
A couple of the teachers I had for A-Level just laughed at me, mocked me and behaved really disrespectfully towards me and took advantage of my naiveté. These are people who are actually supposed to be helpful, supportive and inspirational but that was hardly the case.
It was at 17 during the summer holidays when I had the most horrific depressive episode. I had gone through a very tough period in my life where I had underperformed in my AS Levels and lost my gran within such a short space of time. I just couldn’t handle being me anymore and I despised myself so much for being the way I am and being completely misunderstood by my family members and everyone else.
I spoke to the then-headteacher about my anxiety issues and she was really supportive. It was when I was in the second year of sixth form that the rumour mill really went into overdrive as lots of people suspected that I was on the autistic spectrum. However, it was when my headteacher during upper sixth referred me to a learning mentor named Lisa who picked up on it quite quickly.
When we had our first session, I remember she asked to list a few things that were making me unhappy. She then realised what I listed were characteristics of autism. I felt much more comfortable speaking to her than I did with anyone else. I felt like the first time someone actually got me. I’ll always be grateful to her. She suggested some social anxiety groups. I went to a couple of groups but because of university I couldn’t go to them anymore.
University was often mentally and emotionally exhausting as I struggle with the social aspect. I continued to suffer from depression and anxiety. I was feeling the pressure of being on a female-dominated degree course that I wasn’t as pretty or clever as the other girls on the course, developing feelings of inadequacy. I was also paranoid, convinced I wasn’t fun enough and too boring and that people wouldn’t like me and scared to speak aloud in seminars in case I said something stupid. I felt like a tiny fish trying to swim in a massive ocean and I often drowned.
It then got to a point in second year when I began to absolutely despise my university experience and it got to a point where I just completely wanted out. But I managed to find the courage to stick it out and finish what I started. I’d come way too far to throw it all away and I realised I couldn’t let any setbacks grind me down.
I was speaking to a girl off my course when I was feeling really down and starting to question whether to carry on with uni or not. She was asking me why I was so down. I told her that I was struggling with the social aspect of uni. She told me that she has social anxiety and that she is rarely out, which I noticed myself. I told her I struggled with social anxiety, but she said I seemed really confident. She also said that she had no friends till the end of first year and that if I needed to speak to anyone then she’ll listen. Funnily enough, she ended up becoming my flatmate, along with her now-fiancé, in the final year.
I remember graduating and finishing my degree with feelings of emptiness. I had no sense of real direction and feeling lost and realised I was ill-equipped and unprepared for facing the real world. I felt like I had no purpose, like I just existed, using up oxygen, rather than lived.
Yes, I finished my degree, yes I got a 2.1. But I still found myself in a total delirium, like there was still this gaping hole in my life that I was desperate to fill. I thought I’d leave with a set of friends I’d stay in touch with forever but sadly that didn’t happen. I struggled to find my true calling in life as well as a decent job. It was the typical catch-22 scenario – couldn’t get a job without experience but the only way to get experience was to have a job.
The episodes of depression went from bad to worse till it got to a point where my mum took me to see the doctor and I was referred to a mental health clinic, diagnosed with clinical depression and social anxiety. My anxiety also got really bad till I ended up being too scared to walk through my front door and I ended up having panic attacks whenever I was in any social situations. I avoided nights out like the plague and my depression went from bad to worse.
I just felt so much inner torment of not being able to go out on a whim or being able to effortlessly socialise. I always envied people who could just breeze through a single interview and get a job offer the next day. All the things which so many people can easily do on a daily basis was something that was, and still is, extremely difficult. That was what fuelled the self-loathing and suicidal feelings, thinking the world would be a better place if I’d disappeared. Obviously, I won’t go into specific details about that as I don’t want to feel like I’m glorifying or encouraging it.
I was then referred to some CBT group therapy for two months which really helped as there were people there who had similar issues. It really helped to meet people who had similar issues with anxiety. But it will always be an ongoing process for me to keep it under control. When it came to the one-on-one sessions with the therapist afterwards though, that was when it got uncomfortable and knew that it was more than just anxiety.
I went to an autism group. It was such a relief to meet someone who completely understands what it’s like and is non-judgemental about it. At that point, I finally felt I was starting to make connections with worthwhile people. It really helped having someone who knows how I feel and it is with them that I truly felt understood.
I then had some counselling sessions for over a year during weekends which was helpful as it allowed me to confront all those feelings, talk through my emotions and address lots of different things, such as how my diagnosis affected me personally and my turbulent past at school. In fact, if it wasn’t for that, I would never have had the courage to go travelling by myself.
At Christmas in 2014, my uncle put me in touch with a doctor friend that he had. When I finally decided to get tested, I had few sessions with the doctor in order to build up a rapport. Then I finally had the test where I was given a series of tasks – constructive task, picture task, storybook task, demonstration task. The first one, for example, I made limited eye contact. After that, I was diagnosed. They said I couldn’t comprehend human emotion.
Every tantrum and every outburst I ever had in my life finally had some sort of explanation. When I got diagnosed, I felt like I’d been robbed of having a decent, enjoyable life. That I’d missed out so much. I felt like I’d been in a coma, sleepwalking my way through life and receiving the diagnosis made me feel wide awake.
But I can’t change the past and there’s no point in living in regret as I look forward to a much brighter future. The most important thing I realised was that in life you can’t always control things that happen to you, but you can control how you deal with them and respond to them.
Ever since getting in contact with Autism West Midlands, they’ve been really supportive in helping me come to terms with everything and helping me get my life on track. They helped me get a job. They showed me that I’ve got nothing at all to be ashamed of or apologetic about. Living with Asperger’s definitely gets easier to manage with time and experience.
Even during the recent months reflecting on the past year after my Asperger’s Syndrome diagnosis makes me so emotional. It’s just really fuelled my passion to do even more travelling, especially after reading this. I feel like I’m getting that one step closer to not living my life from the outside looking through a pane of glass like I’ve done for as long as I can remember.
It’s taught me to have more confidence in myself and really take chances. I learnt that it’s impossible to please everyone in any aspect of life. If people can’t accept me for who I am or if they don’t get me, then the problem lies with them. It is what it is and I’ll never apologise for who I am.
I can’t help but think that all the problems I had when I was younger could have easily been avoided had I been diagnosed sooner. It’s still tough not to be hard on myself for all my past failures. I’ve always been quirky and my family have known this so a diagnosis came of no surprise to most of them. I look forward to living in a world where Asperger’s, or any other disability for that matter, doesn’t limit a person’s capability, sense of wellbeing and social inclusion.
Asperger’s is only a tiny part of who I am. It’s something I have to live with every day but it doesn’t define me. There’s so much more to me than that. It won’t stop me from constantly continuing to challenge myself, push myself forward and maximise my full potential. I finally feel like my life is just beginning…
To find out more about Autism Awareness Month, click here. Feel free to share any of your own stories down below. Let me know what you think in the comments. I hope to write more about Asperger’s syndrome in the future…