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Written on 11th Apr 2015 by Sylvia Lowery
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Alex shares what it took to write his book.
I started writing my book in September 2010 at the age of 16. My support worker Annette as well my mother said I should write my own autobiography about my life with autism. I’d start with talking about my earliest memories and go all the way up to my teenage years. I wasn’t sure about this idea. I had tried writing fictional stories in the past and none of them had ever been published, even when I hoped they would. I had a feeling this auto-biography might follow the same fate. I agreed to do it in the end, and hoped it might turn out well. I started it by dictating information to my support worker and she’d type it up on the computer. Once I got into it, I started to really enjoy writing this book. It’d be the part of the day I’d always look forward to. However, every now and again, I’d go through stages of being lost for words. There would be times when I wouldn’t know what to type, and would just spend my time staring at the computer screen for ages. There may have been times where my memory of the past had gotten a little fuzzy or times when I knew what I wanted to say, but didn’t know how to say it. I did have support with the book though. As I said before, sometimes I’d dictate my words to someone else. Other times, my parents would remind me of some of the past events. I have tried to give credit where credit is due in stating when the memories aren’t things I remember but things I’ve been told though.
When I had finished the book we spent very long time editing it. I’d send it to Annette and she would edit it. I often found that when the edited work was returned to me that what I had said had been misunderstood and re-written to mean something different from what I had originally meant. This isn’t a criticism because it is to be expected (I’m glad I got to see that how I had worded it made it hard to follow) but it still got hard going because there was a lot of going back and forth with emails between Annette and I. Sometimes I didn’t even like it when something I said had been removed or changed because it felt like it wasn’t me who said, but I understood that books have to be changed a lot before they can be Published for a community.
Annette wasn’t the only editor. It probably took just as long to edit it as it did to write it, maybe even longer. Margaret Carter my business mentor gave me feedback on the book and recommended that I bring the book on for longer than what I had originally brought it to. I had originally ended the book chronologically when I was 16 (the same age when I started writing the book). However, at this point in time I was 19, and a lot had changed in my life at that point from when I was 16. For example I had now just started up in business doing Public Speaking on autism. Margaret recommended that I should keep the book going for longer. I wasn’t sure about this idea, but I suggested it to other people, and everyone seemed to agree so I wrote three more Chapters talking about how I got into Public Speaking and how I eventually made a career out of it. I am now glad I did this, but at the time I wasn’t so keen on adding more to it. When these Chapters Annette started editing them again and also made suggestions for me. Lynn Plimley who helped mentor me in Public Speaking also gave me feedback, since she did have a part to play in these new Chapters. After this, we had more editing sessions.
My brother, sister, mother, father and another friend of ours whose job was to proof-read also read through it, edited and gave feedback. I kept on having these feelings that maybe this book never would get Published after-all. When the editing was over, we started trying to look for Publishers to publish it. I asked JKP (who publish many books on autism and are well known for it) and they didn’t take it on, because it has too much competition. This was a My brother, sister, mother, father and another friend of ours whose job was to proof-read also read through it, edited and gave feedback long process but we eventually decided to get it self Published.
Here is the forward
Alex was born on the 12th October 1993, three weeks late. Alex was way past his due date but, when he decided to come, it was rapid and he was nearly born in the car on the way to hospital. From birth Alex had problems: he had weeping eczema and had numerous chest infections, which were treated with steroids and antibiotics. As soon as Alex was able, he would pull his body as far away as possible when he was breastfeeding. Many nights were spent playing the Thomas the Tank Engine videos because this was the only way to stop Alex from screaming. Alex’s scream was high pitched and deafening and it was obvious that he was in extreme distress.
When Alex was three I realised his language was delayed and he was having a lot of extreme meltdowns. I took him to the GP and within seven months we found ourselves sat in front of a psychiatrist who told us that Alex had classic autism.
This book has been written by Alex. I have learned so much about autism through the process of Alex writing this book. I have lived through Alex’s life, but hearing it from Alex’s perspective has filled in a lot of the gaps. I was very distressed when Alex first described how his senses were all mixed up and how all the normal sensations of life such as lights and noise were torture. I was also amazed at how Alex could recall early parts of his life when I would have thought he couldn’t understanding what was going on.
Alex began writing this book with Annette Adamson when he was 16. Alex would speak his memories and Annette would write them down. Alex was only part way through his book when Annette moved away and was no longer able to work with Alex. Annette has still worked on the editing of the book via e-mail. The rest of the book was written either through Alex writing or Alex dictating to me. When Annette had edited a chapter of the book and sent the document back I would read the section out to Alex and he would tell me if he was happy with the changes. There was a lot of sending back and forward. This was a painstakingly slow process. Once this stage of editing was completed the book was read by a number of people and mistakes and suggestions for change were made by a number of people. Alex’s Dad, his brother Ben, his sisters Esther and Naomi, and Trudy Kinlock, a family friend, have all helped in this way. Lynn Plimley read through the book and has written a review. Alex’s mentor, Margaret Carter of Patchwork Foods, encouraged Alex to include some new chapters on his public speaking. Suzanne Lowery, Alex’s sister-in-law, has designed the cover and helped with the formatting. Esther Lowery Alex’s sister helped Alex to come up with the chapter headings. I am also very thankful to Karen Maguire who took the photo for the book cover. This book has been a long work in progress and would not be ready to be printed without all the help that has been given. Alex is excited to finally see it in print, and hopes that his story will help others.
Here are the chapter headings :-
Chapter 1: The World is a Terrifying Place
Chapter 2: Disturbed Nights and School …
Chapter 3: School at Home –Therapy Begins
Chapter 4: The Doors Open
Chapter 5: Cool not cool
Chapter 6: Changes Ahead
Chapter 7: My Differences Become Apparent
Chapter 8: My Life Takes a Turn for Clay
Chapter 9: Life Skills and Wonka Bars
Chapter 10: Juggling Sandwiches: The Tale of an Awkward Teen
Chapter 11: I am Not Alone (Or Gonzo and I Understand Each Other)
Chapter 12: My Best Friend is a Web-Cam
Chapter 13: Cameras and Holidays (Or How Two Seemingly Unrelated Things Are in the Same Chapter)
Chapter 14: The Tale of the Three-Headed Ghost
Chapter 15: A Battle for the Ages (The Snowman vs The Stupid Fork)
Chapter 16: I Start Wedding Photography (And Promptly Finish)
Chapter 17: Beginnings and Endings
Chapter 18: ‘A’ Factor As Opposed to the X-Factor
Chapter 19: Business as Usual (And the Saga of the Ring)
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