'Be more normal!' I would shriek at myself - this is what it's like living with a hidden disability
Words by Joely Colmer
I have a gift which isn’t always visible in my mirror; my gift is a disability called Asperger’s Syndrome.
I am 25. I was diagnosed as being on the autistic spectrum by the time I was two but it wasn’t until I was 13 that we realised I had Asperger’s Syndrome.
I’m going to tell you about something that only someone with Asperger’s Syndrome will know; people’s misunderstanding disables us.
‘Be more normal!’ I would shriek at myself growing up in Bournemouth, as I cowered in front of my bedroom mirror as a teenager, with tears burning down my face, painful hands and a shuddering body. I shunned myself for being so alien, for the whispered judgements of people who didn’t understand me. Such people like strangers, working professionals and even teachers, were always critiquing me so that no matter how hard I tried to be normal, I would make ‘mistakes’, and I was always perceived as ‘wrong’… Simply for being myself.
One reason for people’s judgements are my meltdowns is because I’m easily overloaded; I zoom into minor details; every cob web, or crack in the wall screaming for my attention. This and coping with simple changes in routine, (missed bus, new toothpaste, lost keys) whilst multi-tasking my poor communication and awful problem-solving skills lead to shutdowns.
‘Normal’ daily life that most people can cope with, cause my usual physical, mental and emotional abilities to shut down; literally communicating that I need rest. Shutdowns last for days, rendering me incapable of life-skills like walking or talking.
My disability is mostly hidden; people who don’t understand me, constantly pushed me to continue with everyday life, not understanding that I need time out. This meant that I would ‘fail’ at everything through no fault of my own.
Then people wondered why I was not capable, or why I was getting bad grades, or behaving ‘negatively’. To them, I was being lazy or difficult so they critiqued me for that too.
Stereotypes have haunted me my entire life; people saying that I would never amount to anything; that I would never have a good career, a relationship, or live independently. The reality is that I need help every second of every day to help organise myself, to help me do chores, and cope with daily life. I have 18 / 100 average life skills. This means I can’t always leave the house by myself, I have no control over my finances, struggle to catch a bus, cook, or to do everyday basic tasks. As part of my negative mirrored reflection, Doctors have told me I will never be able to have a paid job or ‘work’, because of my Autism shutdowns.
My family and the voluntary sector support me a lot. I am unable to organise myself even to take a trip to the local shop so organising big tasks such as ‘work’ is nearly impossible without their help. Without the continued support from my family I wouldn’t be where I am today. My Aspergers Syndrome affects every aspect of my life making it near impossible to carry out basic tasks, like getting dressed in the morning, to having ‘normal’ conversations and getting from one place to another.
My family have learnt to be very patient with me, and rather pushing or forcing me into new and difficult situations, they guide and advise me instead. As communication is one of my biggest challenges, they’ve learnt to talk to me using specific questions, and to give me plenty of time to process and respond. They now know what triggers an ‘overload’ or ‘meltdown’ and will do their best to not allow this to happen. But when it inevitably does (daily), they know how to ease the pain and get me back to my usual self as quickly as possible (even if that is letting me lie down in a quiet room surrounded by soft blankets for a few days). Like everyone else, I have strengths and weaknesses. So even though my weaknesses are considered abnormal for someone of my age, as a family, we focus on the positive. I may not be able to tie my shoe laces, but I am a published author.
I have lots of abilities; I just need the time out, to have the capability to do them.
I work in short bursts for a few hours during a 1-2 day week. I work in sensory friendly surroundings with lots of time outs and rests and exercise (if physically able) in-between.
I have severe difficulty (to the point of being physically and mentally unable) of organising myself to complete basic tasks. If I am able, I work on my Autism Activism; whether this be writing speeches, which exhaust me and cause me to need to rest within hours, or designing content for my website or workshops – but I can only do this so many hours every week, and then I’ll be overloaded and need to shut down to recuperate my abilities to work the next week.
I have never had a paid job.
I wrote my book for my Autism Activism, to aid positive understanding of the hidden hardships and quirks of Aspergers syndrome from a professional and personal perspective so people can learn how to empower.
Thanks to support and understanding, these difficulties haven’t prevented my career. Although difficult, I started my career, from being an unpaid volunteer Autism Activist. I ‘worked’ as flexible as I needed to, a few hours a week, cancelling out of the blue when I had a surprise shutdown, leaving early – the flexibility a paid job can’t offer. I slowly worked my way up, taking as much time out as necessary to recuperate my abilities.
I met my partner whilst we both volunteered, became a motivational speaker, I started winning National Awards, and created my own Autism Activism business called ‘AspergerWorld’ and finally, I authored my inspiring and educational book ‘AspergerWorld : My Fairy Jam Jar’, a book about the hidden hardships and quirks of my disability, written from my unique personal and professional perspective. I live ‘independently’ in a flat shared with my partner. My reflection used to taunt me, saying this was something I would not achieve. On a good day, I am independent and I have flexible routines to follow to ensure I do everything with the appropriate time-out.
Yet, on the frequent days that I have shutdowns, all the chores like cleaning, tidying, cooking, bills, food shopping etc, are up to my partner, and he does it all, cheerfully, whilst caring for me, and making me smile. Socialising and communicating is a very big difficulty of mine, I often feel like I am talking to people in an alien language, but my partner and my family has learnt to communicate very clearly and specifically, empowering me to understand more. I believe that support and understanding really can make a world of difference to how we see ourselves in the mirror, and can empower us to thrive, and be the best we can be. Recently I won a World Community Achievement Award, and I travelled with my partner and my family to Canada, for the Award ceremony, where I was also honoured as a World Autism Ambassador.
I really didn’t think I could be any happier, but then my partner took me on a day trip, and we went up Grouse Mountain in Vancouver, hand in hand, laughing, snapping photos of the beauty that surrounded us, in love, and loving life; and then, as we caught our breath, overlooking the stunning view of Vancouver from high up in the clouds, he took my breath away, as he got down on one knee, and proposed. Thanks to my fiance, my family and volunteer support, I can now look in the mirror, standing tall, smiling, because my mirror now reflects the truth.
Now I can look in the mirror, standing tall, smiling, because my mirror now reflects the truth. I now know that I’m not wrong for being myself because my disability has many gifts in kindness, honesty, rule abiding, never intentionally bad or rude, loyal, empathy, selfless.
Aspergerworld by Joely Colmer, £12.99, published by Matador Books