This time two years ago when I was 18, the way everyone saw it, life was going great for me. I had a job I loved, I aced my first set of university exams, I had lots of friends and I had strong career prospects.
Now I am 20 years old, and sat in McDonalds at 2am, with my shoes off, fidgeting with an infinity cube, staring at a wall with my headphones in, like I have for the past 2 hours. This has been a common occurrence over the last few months. Recently, I have been feeling pretty lost, avoiding social interaction and barely eating and sleeping.
This happened as a result of being autistic. Let me go back to the start and explain how I got to this stage…
I have the typical undiagnosed/ late diagnosed autistic story that you are probably bored of reading by now. I always knew I was different, I was bullied at school, I masked my true self and all that jibber jabber. I’ll go into detail about my traits etc. in future blog posts.
There are a few things I want to mention though:
- Everyday when I got home from school I used to read books and play games to escape from a world I never truly understand. Why try socialising when you can save the Universe with your dinosaur astronaut friends?
- POKEMON WAS MY LIFE – I used to play on the driveway with my neighbour who was 4 years younger than me, so that I had someone to share my special interest with. Did you know the creator of Pokémon is autistic too?
- I had a ‘normal’ home life. I live with my mum and my brother. I didn’t just mask at school, but I masked at home too. My priority when I was younger was to fit in. But as I got older, I stopped doing what my mum wanted me to do as much and started thinking about myself. Now I don’t really speak to my mum because I don’t conform to what she wants anymore.
- I did well at school. Studying was a lot easier than socialising, so I finished school with 8 A*s and 3 As, and finished college with grades A*AA too.
Before starting university, I got a part time job which completely changed my life. It was a job as a support worker, offering social opportunities to children with special needs. From the first shift, I felt like I fit in. I understood most of the children and loved every minute I spent there. I started doing more to learn about the children, reading about autism in particular, and I was surprised by how much I related to what I read. Like I said, I always realised I was different, but this job made me realise I am autistic.
Sarah, my boss, is who I have to thank for this realisation. it was her who gave me the job – a nerdy loser who wanted to be a web developer or an accountant, I’m still not sure why. It was Sarah who noticed how at home I felt when I was with the children, despite keeping to myself when I was with the staff. It was Sarah who said I was doing great and made me feel appreciated (as well as the kids who were asking me to work with them of course!). This was the first time I received positive feedback for being myself. I hid some things, like my anxiety and my difficulty understanding emotions, but I enjoyed work and I felt comfortable being there. I might driver her mad now when I get the kids overexcited, sing too loudly or go on crazy adventures, but she’s the one who made me feel comfortable doing that. She was also the first person in my personal life I told I was autistic. Us autistic people need more Sarah’s in the world.
After starting this job I felt like the piece of my life that was missing had been found. As a result, my first instinct was to do more to support autistic people, and I started working and volunteering for 14 different organisations. I changed degree from Computer Science to Psychology and got involved with everything I possibly could. As I was doing this I noticed more and more of the huge struggles and challenges that these autistic children and young people were facing and were going to face in the future. People say autistic people do not have empathy. But that is not true, we have too much empathy. I felt like I wasn’t doing enough to help these children and as a result set up the charity A Spectrum of Possibilities in June 2017. But I was so overwhelmed by how much need there is that my empathy turned from a driving force into a burden.
I got so overwhelmed and upset by it that I got to the point where I could no longer function. Everything was too much: the empathy, all of my commitments and the energy used to mask my autism and fit in. As a result I went through a process known as autistic burnout (you can read a fantastic blog explaining what burnout is here). I failed my second year of university exams, I stopped seeing friends and going out, I started overthinking about every little thing and I started spending more and more time on my own: sitting and thinking and going on random walks. My burnout started in December 2017, and I have only recently started my road to recovery, and to functionality in February 2018.
My life has changed rapidly over these 3 months.
During this time I spoke to autistic people who told me about burnout and how to move forward. I was mainly told I need time to recover and need a break from everything.
I went to counselling sessions to get support, but all of their strategies either don’t work for autistic people like me or simply didn’t help.
It felt like an endless downwards spiral. I needed a break, but I couldn’t have a break because of the expectations people had of me, and the amount of things I had planned or needed to do.
This made me realise that I need to change my life.
I need to get rid of the mask and stop trying to conform, as this takes up too much energy.
I need to tackle any problems at their core, rather than trying to cope and deal with the aftermath.
Autistic people have written a lot about this. Eventually, you get to the point where you run out of fuel and can no longer live the fake neurotypical life. This leads to mental health problems, and even suicide in autistic people who don’t realise they need to change and start being themselves.
So it is my time to change.
Now I ask everyone to be black and white, open and honest with me, like I am with them, due to my huge anxiety over uncertainty. I also bought a productivity planner and scheduled all of the tasks I had to do this year, and put them into manageable chunks I can do each day so that I stopped feeling as overwhelmed. Plus, I have stopped speaking to ‘friends’ who just used me and didn’t reciprocate and I started tackling my other anxieties. I have also made a pledge to share that I am autistic to everyone, to stop masking as much and to let everyone know what I need.
I am still not really sleeping, I still have a rubbish appetite, I still avoid lots of interaction and I still faze out of the world and go into deep thought. I also still don’t know if I will be able to complete my Psychology degree, but I am improving and I am ready to start being myself. Most importantly of all, I am ready to live life the way I am supposed to. It isn’t going to be easy, but I now have some amazing people in my life who I am very grateful for, who have helped me get to this point, and who I think will help me go further. They aren’t there for me because I pretend to be someone I’m not, but they are there for the real me. If you mask for your whole life, you will never get the opportunity to meet amazing people like this. I am grateful for the opportunity to realise who I really am and what I need to do to be happy. Thank you!
The purpose of A Spectrum of Possibilities is to empower autistic children and young people, celebrate their differences and make sure they live happy, prosperous lives, by using the experiences of autistic adults to stop these children from going through what we have gone through and to help them to understand themselves and what they need.
But we aren’t just here for the children. Parents play an essential role in the future of autistic children. We are here to help parents understand their children and to help them with their struggles, but also to learn how to utilise their children’s unique strengths. I know autism coming into your life is a huge shock, but ASOP is here to support you in your autism journey, which is a long and challenging one, but which pays dividends in the long run if you do it right. I am going to write future blog posts that will hopefully help you understand and help your children more.
If you feel lost, hopeless, or just need a bit of guidance or support, please get in touch and I will do anything I can for you. I am fighting for a future where all autistic children can grow up happy, and I would love to show you how to do the same for your children.