Living on the spectrum
My initial idea for this book was to just include positive things that people liked about Asperger’s and Autism (believe me, there are plenty) but then I thought it should be more balanced.
I wanted to create a collection of reflections about life on the spectrum written by people living on it – not by ‘experts’ telling us what life is like… “The ABC’s of Life on the Spectrum”, gives voice to 26 individuals who volunteered to participate in the project, opening their lives, feelings, struggles and benefits for the world to be able to see what it is really like to live on the spectrum, or with someone on it – both the beauty, and the ugly – nothing was edited out of their stories.
For example, what I love is our honesty and straight-forwardness. I only wish other people were as direct as I am, in which case, for many of those times that I have regretted missing, I would probably have been able to grasp and understand the situation and what was happening and reacted positively. I actually love how I never know what I say I am going to do! In fact, my friends have nicknamed me ‘Dandom’ (Dan+ random) because of this…
What I hate most is my ‘self-hatred’. I hate that I beat myself up over so many missed situations, miss-understandings, lost opportunities, etc. I used to get so mad at myself for not ‘seeing’ what was happening and reacting appropriately (or positively – or even at all!). I never blamed Asperger’s or Autism (as I wasn’t diagnosed until a few years ago), I just myself, which is not really fair to do, but in the end – it is who I am, and only I am responsible for how I act/react and what I say and do (or, as in most of these cases – what I don’t say or do!)
For this reason, I wanted to create a book that shares the same thoughts and ideas – but with a twist… I wanted to make sure everyone talked about both what they like, and what they hate.
I always say that people on the spectrum keep the world in check – society could not survive if it were 100% people on the spectrum: it would dissolve with too much honestly, it needs people to ‘smooth over’ and ‘cover up’ things so that it can function as a whole… but the few who cannot tolerate scandal, etc. are the ‘check-points’ of society that keep it on track.
I personally love things about myself (and other people on the spectrum) that I think are wonderful… For example, if I say I am going to do something, I do it! And if someone else asks me to do something, and I say ‘yes’… I do it! And, if someone asks me a question, I tell them the truth! I abhor hypocrites, nepotism and two-faced liars.
But, I digress… back to the book… I hope this book helps others in even a small way to understand who they are, that they are not alone, and that they can get better – it just takes time and a lot of self-reflection and hard work – but also the freedom to be able to forgive yourself and realise it is not your fault life has blessed you with your ‘personality’, but it can be combined into society – you be yourself, they be them, and everyone can get along fine.
I also wrote this book partly because I fought my diagnosis (I actually ignored it at first when I got it 5 years ago in my middle age) but when I finally accepted it to myself (deep inside down to the inner core of my being) everything that anyone had ever said or done to me (or that I had done – or more likely, not done!) suddenly made sense. Like the pieces to a jigsaw puzzle all suddenly falling into place and I could see the picture perfectly clearly and I mean not just the last piece of the puzzle… I am talking about dumping a box of puzzle pieces on the table in a big pile of a mess, and suddenly they are all in place and the puzzle is complete – it was that dramatic to me!
One thing that really helped me admit and accept my own diagnosis was reading about other people’s experiences with it on Internet discussion groups. I remembered responding to them that I could literally have written what they posted word-for-word based on my own experiences. ‘Bonding’ with others like that gave me strength to continue with my diagnosis and development.
Every story I read resonated with my own experiences, bringing up lots of old memories, pain, feelings, and frustrations… with very little joy. I promised myself I would make a ‘positive’ book about life on the spectrum, and so I hope the reader takes away not only the common suffering, but also the incredible uniqueness of that which we now ‘label’ Asperger’s, Autism, or ASD
My hopes are that once more people realise how the wrongly used, and now even cliché the words of ‘special’ and ‘gifted’ are for people living on the spectrum, we will simply become more ‘accepted’ and honoured within society. I often tell people, if I had to choose a friend between a ‘normal’ person, and someone on the spectrum, I would almost always choose someone one the spectrum – they (we) are some of the most loyal, honest, trustworthy, warm and friendly people I know… yet, all too often, only the ‘negative’ aspects of the spectrum are highlighted in social media, the news, etc.
I believe it is time to accept who we are, honour ourselves, and take our rightful place in the world as we are – not behaviourally ‘modified’ for general public consumption.
It has been a long, intense journey to get to this point, and I would like to extend a big, heart-felt thanks to all those who helped along the way… I couldn’t have done it without you!
Images by Janine Poon
Includes contributions from:
Carla Betancourt, Chante Douglas, Genevieve Osteria, Inga Kerry, Jennie Quinn, Jennifer Reynolds, Lakenya Colenburg, Lindsey Wade, Morgan Davis, Saira Zuberi, Whitney Hodgins …and many additional anonymous writers and a wonderful cover designed by Janine Poon.
Available online at Amazon worldwide