I'm Not Strange, I Have Autism

I'm Not Strange, I Have Autism
Living with an Autism Spectrum Disorder

Ellen van Gelder

isbn 9789461850881 (eBook)
isbn 9789461850645 (paperback)

1st edition January 2015

Original title: Ik ben niet vreemd, ik heb autisme

Translations: Avia Dassen, Karin Wouters

Published by Village an imprint of VanDorp Publishers

Postbox 42
3956 ZR Leersum
The Netherlands

www.vandorp.net / info@vandorp.net

Copyright©2015 Village / VanDorp Publishers The Netherlands
Copyright©2015 Ellen van Gelder

The proceeds of this book are donated by the author to the autism foundation Stichting Autisme Almere, The Netherlands.

No part of this publication may be reproduced in any form without the express written permission of the publisher.

ellen van gelder

I'm not

strange

i have

Autism

Living with an autism spectrum disorder

VILLAGE

Aren’t we all different?

Preface

Aren’t we all different? What is the being-different in autism? You will notice different things, and notice things differently. It reminds me of a joke a touring guide once told me: ‘Ladies and gentlemen, if you look on your left... You will see nothing on your right.’

Is it a curse or a blessing to observe differently and notice different things? In this book, you’ll find your answers to those kinds of questions. Many answers will be provided in this collection, but it also becomes clear that things non-autistic people take for granted can be incredibly difficult for people with autism. The book reads like an expedition, and a true explorer cherishes his curiosity, of course.

The non-autistic person has many shared opinions about socialising. There are common ideas on what is considered exciting and what is not; these conceptions give the non-autistic person a sense of connection that they need. People with autism, on the other hand, have much less of a clear insight in social life in general.

I think it would be difficult to have ASD and curiously query the other, but, instead of harvesting answers, you end up estranged from the person without ASD. Why does it annoy people? It appears to be difficult to communicate when one person listens to the guide and looks to the left, while someone else follows their own plan and gazes to the right. What is missing, most of the time, is the curiosity to ask the hows and whys of someone’s behaviour. When you have autism, the why-questions are essential in order to finally understand what is meant.

It takes time to clarify, but it is worth more than what we realise at that moment. If I look around me, and see how people normally spend their time, a lack of time can hardly be the problem.

As a community psychiatric caregiver, I met Ellen shortly after she received her ASD-diagnosis in 2010. She had many questions, and my attempts to answer them usually led to more questions. At that time, she didn’t realise how difficult she made it for me. In open, honest, and unambiguous reflections she sent me through email, I noticed, in return, how often I didn’t realise how difficult I made it for her. Together we learned how to communicate better, and we found new insights. Where talking used to be an incredibly big effort for the both of us, we now have much more space for relaxation. We have become familiar with the other’s being different. Ellen’s never-ending determination to wanting to understand what someone means, sees, and feels makes her distinctive from others. At present, the majority of the puzzle pieces that constitute her life are within reach; she knows her possibilities and her pitfalls. She handles all of them with a healthy balance of effort and relaxation.

This book gives an insight in the stamina you need to feel at ease in your being different. It is an inspiring book for people with ASD who are looking for balance in their lives, and not just that: this book also gives a beautiful illustration for partners, caregivers, family members, and others who want to know more about autism spectrum disorders, and of the ‘being different’ that comes with ASD. I wish you, as a reader of this book, a life filled with healthy curiosity, because without it you’ll lose an important essence of it. We are all able to connect and meet in this being different, as long as we keep our mutual curiosity.

Erik Munnik

Autism expert for ‘Focus on Human’,

Almere, the Netherlands

Introduction

It was 22 January 2010, the year in which I turned 40, when I heard that I have Asperger’s Syndrome: ASD, a disorder within the autism spectrum*. On the one hand, despite being prepared for this diagnosis, it still brought up the necessary emotions. On the other hand, it was a relief: the last piece of the puzzle finally fell into place. In the meanwhile, I had been diagnosed with several other disorders, amongst which Tourette syndrome, obsessive compulsive disorders, and emetophobia**. Apparently, my autism never surfaced really openly; it was a clear example of so-called ‘hidden autism’.

I suspect that, just like me, there are many other adults who were diagnosed at a later age. This is probably due to the fact that there is a lot more knowledge on autism these days, and hidden autism is still widespread, especially amongst women. With this book, which is partly autobiographical, I’d like to give the reader an insight in the world of someone with autism. I would like to do this in an accessible way and chose to do it in an A-through-Z structure. Frequently I will quote some brothers and sisters-in-autism, as I like to call them, because they will often experience things differently than I do. Not every autist is like the other, you know? ;-) The quotes in this book are taken from fellow members of a forum for people with ASD.

Over the years it’s become clear to me that autism has to do with processing information in a different way. This book will also discuss some scientific backgrounds (which can be found in the ‘Theories’ section), but I would mainly like to keep it practical. I hope that people with a disorder in the autistic spectrum (henceforth, ASD) can recognise themselves, but the same goes for people who are still in search of answers. This book also is an appropriate read for people who live with someone with ASD, and would like to get to know more about the topic.

Ellen van Gelder

*Autism Spectrum Disorder in DSM-5:

This entails that there will no longer be new diagnoses of Classic Autism, PDD-NOS, and Asperger Syndrome.
Under much attention from the media, DSM-5, the most recent handbook for psychiatry, was launched on 17 May 2014. This is the manual for psychiatrists, which includes all diagnoses that are filed under psychiatry and which criteria they adhere to. In this brand-new version, much has changed for autism as a diagnosis. The current diagnoses PDD-NOS, Asperger Syndrome, and Classic Autism are put together under one name: Autism Spectrum Disorder (ASD). The term ‘spectrum’ here denotes that there is a diversity in the ways in which autism can out itself. In the DSM-5, there is a possibility to specify if the ASD is either mild or severe.

Source: NVA (Nederlandse Vereniging voor Autisme, the Dutch Association for Autism)

** Emetophobia: intense fear for vomiting or seeing other people vomit.

Asperger’s

The day after I received my diagnosis – when it was still called Asperger’s instead of ASD – I wrote the following:

Maybe needless to say, but no, this isn’t a story about a delicious asparagus soup bubbling away on my stove at the moment. To bring on the hard facts: since Friday I know that I have Asperger’s, a disorder in the autistic spectrum... No, I’m not surprised... now I finally know why I always act so ‘weird’...

When I was younger, I was spit out and excluded, but every time I tried to be part of the group again. When children were playing hide and seek, I would stand near them and announce, ‘I’m also joining you’, and then I would hide. I didn’t realise at all that they didn’t like me.

I’ve always tried to be part of a group. In secondary school I was bullied and teased continuously (they would imitate my tics; I also have Gilles de la Tourette). Later I found out that they bullied me because of my behaviour, and that my tics were a great way to do it. Strangely enough, I would still invite the bullies for my birthday every single year.

During English class in third form, we were allowed to bring a cassette (you know, those rectangular things with a tape inside that you put in a cassette deck) with music to listen to through headphones. When it was my turn, I crammed my cassette tape full with one track, my favourite Gazebo song: “I Like Chopin” and put it on in class. When the song started for the second time, there were some indignant responses from the classroom, and when the song – which I thought was amazing – started for the third time, people started to get really annoyed. I truly didn’t understand what I had done wrong. It was a good song, wasn’t it?

I also did teacher training and worked in education for some time. My preference for being around children might be explained by the fact that children are very honest. I remember a comment from a girl who told me, ‘Miss, when I look at you, you always look away’. I started to pay attention to this. I have hardly had to deal with my other nonverbal expressions. My facial expression remains neutral (with the exception of my tics), and I hardly gesture when I speak.

At one point I was ready to be admitted to the psychiatric wing of the hospital. My colleagues and I were having a final drink at the school where I worked at the time. I said, ‘Cheers, to my madness!’ Nobody laughed! How strange?! I was very surprised at their lack of response, and, in all honesty, a teensy bit disappointed.

Conflicts and miscommunications, these happen to me all the time. At one point I figured out that, apparently, it is normal to have to interpret things. That’s very difficult when you take everything literally. What does ‘See you soon!’ or ‘I’ll phone you soon!’ mean? Or ‘You’ll hear from me,’ that expression doesn’t make any sense at all! It really drives me mad sometimes! But when I start asking questions, I’m the one who drives people insane. I simply don’t understand it sometimes. I have often felt and still feel so powerless, because I don’t understand the world around me. I could write a book about it. You know what? Maybe I will.

I’m going to do groceries in a bit. Edit: I’m going to do groceries now.

I retrieved those past memories with my best friend, one of the few who has always accepted me the way that I am. She’s one of the few people on this planet who has incredible empathic skills. Even people without ASD can take her as an example!

Big picture

This chapter isn’t about big pictures, but about missing them. Although I do sometimes wonder what the deal is with blowing up pictures... I tend to lose the big picture quite quickly. I notice it in my own house, where it’s usually a mess. I don’t want it to be that way, though, and I always swear to improve it. For some reason, however, I am incapable of having a clean and orderly house. It’s difficult enough to start doing the dishes, because it’s arranged so uncoordinatedly on the counter. The only thing that’s really ordered well is my CD-collection; it’s perfectly organised in alphabetical order in storage boxes.

My garden is pretty big, and I tend to lose some structure there as well. Last year, I divided my garden in four sections, and I clear out one section at a time. When I don’t, I’m likely to start clearing things randomly, and will lose track of where I’m at.

When someone asks me multiple things at the time, I tend to lose the bigger picture as well. I’ll think about the first thing they asked, and I’ll remember only part of the second question, and then there’s a problem. What should I do now? What is the most important? Those are questions I ask myself. Eventually I freeze, because I lost the main point.

Karen:

‘When I lose the big picture? When it comes to complex tasks, where I have to do more things simultaneously. When our house is messy. My surroundings have to be organised, or else I won’t be able to function. I have to do chores one step at a time, so I have to divide them up in steps first. For example: clearing the room so I can cook. First, taking all the cups, glasses, plates, etc. that are in the room, and sorting them on the counter. Then, putting the papers in the room in a logical spot, or stacking them. Then, hanging all the coats on the coat rack... etc. And only then I’d be ready to start cooking.’

Sandra:

‘Having a clear picture clears my head a bit. It’s always busy in my head, so it’s difficult to keep things in order up there. Having predictability, clear structures, and clear chores and orders help me to retain that overview, enabling me to do what I have to do.

It’s not like a ritual, I really don’t care about those, but it works as a foundation or support. They are a type of guidelines, if you will. It is exhausting if I have to keep figuring out what and how to do something; I can’t really do that automatically. Those famous autism-puzzle pieces have to be thought together, as it were. The more unrest in my head or around me, the more difficult it becomes. Time and social pressure (like, ‘Come on, you have to understand that,’ or ‘No, don’t go on auto-pilot’) are the most devastating things in that respect. It often wears me out so much that I’ll literally see stars of being fatigued.

In stressful situations I’ll have too much on my mind, and I lose the big picture as well. Following conversations in a room where multiple conversations are happening tire me as well. The same goes for overseeing traffic situations. When it’s calm and neat around me, I feel less like my head’s going to explode.’

Changes

 I find it very difficult when things go differently than planned. It used to be much harder than it is now, though; now I take into account that someone might just cancel an appointment, or that someone might show up later, or not show up at all. Realising this makes my life a little bit easier.