There is a common misconception that people with Asperger’s wish to be cured. Lydia explains how she does not ‘suffer’ from it but uses it to her advantage.
January 2015. I’ll always remember this date; two months prior to my sixteenth birthday, I was (at last) diagnosed with Asperger's Syndrome. I use the words ‘at last’ because it was an accumulation over several years, of events signalling that something wasn’t necessarily right. And it was like I finally had an answer I needed.
I knew for a long time that I was ‘different’ - something seemingly impossible to articulate. I could talk about ‘special interests’ for hours, I would ‘stim’ (tapping fingers together, clapping, etc) to calm down. I was also a ‘loner’ throughout my education; more likely to be reading in the library at break time, I didn’t have a lot of friends. I was very literal (if you told me to “pull your socks up”, I would), prone to flamboyant ideas.
The one thing I have always found very hard is the lack of a sensory filter. I can’t regulate my senses very well; if it’s hot, I’m more likely to wear woolly tights and a cardigan. If there’s a lot of noise - like on the Underground - I travel with headphones in, to block it out. Some foods I avoid, because it’s hard to digest or chew. (Sweetcorn anyone? Not for me; the popping sensation is horrible.) I also don’t wear a lot of heavily scented things; I only wear skirts and dresses. (Trousers are for Pilates or Badminton. Nothing else.)
Then there’s people. That was the hardest thing of all.
I’m not good at reading faces; a smile can mean a thousand different things asides from being happy. (I’m still learning how to identify emotions, as well as tricks to overcome this in interviews and conversations.) When diagnosed, there were differing reactions, largely falling into two categories: the “it doesn’t change a thing” demographic, and the “I never want to speak to you again” kind.
Going from this, I started to change my attitude slightly; I believe that, in spite of needing help for various reasons, learning disabilities and mental health problems should not be seen as a hindrance. They give us traits that can be utilised.
Because, can I be honest? I was fed up with being told I wasn’t worth the while; I was angry at being told I needed to be ‘cured’. Feeling unhappy was not what I wanted; people sometimes react badly to me saying I’m on the spectrum, but I didn’t want to worry about that. I am still a person, in spite of being on the Autistic spectrum. I do not ‘suffer’ from it; I use it to my advantage.
These days, I am training to be a journalist on a local diploma course, recognised by the National Council for the Training of Journalists. The Journalism Diversity Fund supports me to do this.
I still think that attributes given to me by having Asperger's Syndrome (I prefer the term ‘Autism’), have helped a lot with my training. For instance, my ‘special interests’ allow me to focus on particular subjects for hours at a time - which is helpful for longer form stories - as well as retaining information for long periods of time.
Alongside this, I am also a blogger at mademoisellewomen.com , in order to document life with Asperger's Syndrome, as well as my journalism training. I am also a freelancer for various publications; I have contributed to Disability Arts Online, The Brighton & Hove Independent, and more.
Sometimes I wonder what life would have been like without a diagnosis, but I think it bought everything full circle for me.
Do you have a Hidden Story you'd like to share with us?
We'd like to know how your invisible condition has affected your day-to-day life, and hear of the kind gestures or dismissals you've experienced along the way. Or can you offer a perspective as a friend, family member or carer? Or as someone who now feels differently after learning about another person's experience with an invisible illness?
The stories we collect will form part of our Hidden Stories project, which is about exploring – as a community – the way we behave towards people with conditions and illnesses which can't be seen. Only by sharing our experiences can we begin to understand them.
Get in touch with Rachel (firstname.lastname@example.org) and we'll help you to (sensitively) share your story and find support if you need it.
Join our support group on Facebook
We've started an online Hidden Stories community for those living with or affected by invisible conditions and disabilities. As a closed Facebook group, it’s a safe place for sharing stories, asking questions, and for mutual support and solidarity – amongst people who really know how you feel day to day.