My Life as an Autist

My Life as an Autist
Living with an Autism Spectrum Disorder

Ellen van Gelder

isbn 9789461850881 (eBook)
isbn 9789461850799 (paperback)

1st edition August 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

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

ellen van gelder

My Life as an

Autist

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.

Changes in relation to modern technology are my biggest stumbling-blocks. Take a new website layout, for instance. It may cost days or weeks for me to get used to them. Last year, I bought a pretty modern phone, and lo and behold, I’ve gotten used to it. I also have a ridiculously large TV, LED or HD, I have no idea, but it’s pretty cool! Secretly I get nostalgic and want to go back to the era in which modern devices didn’t play such a big role. Of course, I see the usefulness of all of those gadgets, but it doesn’t balance out the stress that comes with it. You always have to be available, and when they stop working, who fixes them for you? Also, they’re ridiculously expensive.

Changing to a different social worker is the hardest. It takes months or longer before I start to get used to them. For my housekeeping duties, I have a good help now, and she understands how she has to deal with me. I won’t change to a new help any time soon, because it takes up too much energy and it’s not relevant for now.

Khadijah:

‘There are things I want to change continuously, and things I don’t want to change at all. There are things that change without me wanting to, and realising this change takes some time. Think of, for instance, a new taste sensation. Only when I evaluate the taste, I change the way I cook, so that everything around this new sensation changes in my system. It’s pretty rigorous.

I also have combinations of changing and not changing. For instance, I like to keep my furniture and knick-knacks, but I do like to rearrange them all the time. I moved house recently, and I tried to keep as much of them as I could, though I had to add some things to it. Nevertheless, it felt very good to do it like this.

Something that never changes is my favourite colour (purple). Of course, I wear different colours and I have stuff that isn’t purple, but I have to have something purple at all times. It doesn’t even have to be visible immediately. There have been times where I haven’t put purple in my clothing, but I’d have a purple hair accessory. I’ll find some purple item I take with me.

The changes I find most difficult are the ones where I have to bend over backwards to do things that I decide to do differently. It is easier when someone asks me to do something differently. For instance, I’m wearing coat A, because I always wear this coat when I go see my sons. Suddenly I think that coat B might look better with my outfit, colour-wise. I’ll take coat B out of the closet to wear when I leave, but when I wear it, it just doesn’t feel right. Then I’ll change back to coat A. I’ve come far enough to wear coat B instead of coat A, and no longer doubt this change. It’s the same when I have to change from winter coat to summer coat, and vice versa. These are only a couple of examples, but I could fill an entire book with them.’

Anne:

‘I respond similar to most changes: when I’m feeling well, I can cope pretty well with them. If I’m not feeling that well, a relatively little change can completely shut me down.’

Rob B:

‘I know by now that change is just part of life. I’m geared to cope when things go differently in practice, but sometimes I can feel uncertain and bothered by it. By knowing this I don’t grow angry or respond negatively in another way, which takes up no energy at all. However, having to realise that I know takes an awful lot of energy.’

Karen:

‘I can deal with change, but it has to be announced. I have to know in advance what I’m dealing with.’

Sandra:

‘I can handle change pretty well; it’s a fact of life that things deviate from their plan every day. I don’t need everything to be the same. I can start to feel really anxious when I’m in an environment in which I have to do something according to strict rules. For that reason, I left the day centre, whose activities were focused on autism specifically. For some it would be paradise, but not for me, though. Changes can cause some tension.

I can deal with change in terms of a change in a known environment, but it does take a while for me to get used to them. It doesn’t feel familiar anymore, which also means that the picture that I have of the place will have to change. That usually takes some time. At the day centre, they took away the cupboards; now, the space looks completely different. I’m not going to complain, but I miss the old layout. I have to say that the old layout wasn’t exactly practical for most people, and it is important for the social workers to be able to have a good idea of the space and the people.

Moving house is also a good example. After my last move it took me a year to update the pictures I had of ‘home’. It took the same amount of time before really experiencing my new house as my home. Only now, the biking trails are ‘my routes’. This feels now so familiar, that I don’t want to leave this place anymore!

Change in my everyday structure can mean that I am completely distraught, because my guidelines aren’t relevant anymore. It drains me, because I have to consciously think of what I meant to do that day.’

 Communication

 I always fail in this area. I really don’t understand why people communicate so vaguely.

Saying ‘A’ when they mean ‘B’... A good example is the following, which happened at my previous reintegration office. My coach was going to look up some things for me, and phone me about it on Thursday. When someone tells me that they’ll phone me, I assume that they will do it, right? That Thursday I waited for that phone call, to no avail. By six o’clock I was pretty pissed off and thought, ‘forget it.’ Promises, promises... In moments like these, I feel slightly murderous intentions arising in myself. Later, during the next appointment, my coach told me, ‘I didn’t have news yet, which is why I didn’t phone you.’

My jaw dropped! I can’t know that there isn’t any news, can I? And didn’t we agree that she would phone me? I’ll contain myself at such a moment, even though my blood is boiling. I will tell them, calm and composed, that I would prefer it if they would give me a call anyway, because that was our agreement and I tend to grow agitated as a result. The coach told me that she would keep it into account, but the next time she did the exact same thing. I almost reached my level of explosion, and we had a little bit of a row in which I shared my opinion quite bluntly.

At those moments I find myself wondering, ‘When someone tells me to call, should I take into account that it might not happen?’ Because they tell you ‘A’: I will call you. But maybe she means ‘B’: maybe I will not? Something like that? It seems quite simple, to just not have any expectations. Unfortunately it doesn’t work that way for me, because I’d like to be prepared when someone might call. When I’m prepared, I will have my phone on hand and mentally ready myself to receive a phone call. These things cause quite some restlessness for me, because I shouldn’t expect something, or maybe I should...?

This Internet era hasn’t always made the life of a person with ASD easier. I’ve had many misunderstandings, through email for example. This escalated to the point where it ruined friendships and relationships. For this reason I decided that I will no longer have arguments and/or misunderstandings out through email. Preferably I’d do it in face-to-face conversation, and if that can’t be realised, then at least over the telephone.

Something I don’t understand at all when emailing is the salutation and closing. You can start an email in so many different ways... Think about hi, hello, dear, good day, dearest... Although the salutation isn’t that difficult, the closing is what usually causes trouble. You can use yours sincerely, yours truly, yours faithfully, kind regards, best wishes, cheers, love, x, xx, xxx, xxxx etc... and I’ve probably not mentioned half of the possibilities. I understand that you can’t end a formal letter with a series of crosses, and if I write my best friend I won’t sign off using ‘yours faithfully’. But oh, there are so many possibilities between those two, it could drive someone insane! I can get so confused that it makes me feel completely powerless.

However, there are still many misunderstandings in ‘live’ contact. Among affecting other elements of perception, autism is a disorder that affects the processing of information. In ‘live communication’ I always distinguish three ways of communicating that often happen at the same time: verbal (the words), non-verbal (the facial expressions), and gesturing. As people with ASD can’t detect all three of these channels of communication at once, they will often miss parts of the entire message. For example, when a friend is annoyed over something and she tells me about it, I should be able to see from her face that she is annoyed. But, when she tells me this in a friendly voice, I often don’t notice that she is annoyed and the message doesn’t come across. If I would have been able to detect all signals, I would have read her face, seen her body language, and as such understood the entire message.

Understanding body language is something that I’ve learnt to do by reading up on it and subsequently observing it in people. I can often read facial expressions, as long as they are clear. Anger and sadness are the easiest, but the grey area of other emotions are still difficult. This is something that many autists have trouble with: the separate ways of communication, let alone the combination of two or three of these channels.

￼

Rob (after a meeting with fellow autists):

‘I notice that I’ll often look for the socially acceptable behaviour at such moments. I have an extensive collection of card-indices in my head, to use a metaphor. In these indices, there are many different types of people and social situations, which I have provided with additional notes from the past and copies of the ways other people behave. When I talk to someone, I pull the right card out of the index, as it were. Does someone need consolation? For women, heartache: ‘Console, put an arm around her, ask if she’s doing okay, how she feels, listen to her, etc.’ Man, heartache: ‘(curse) man, what the f*ck? Want a beer?’ Something like that. At this stage I wonder if I’m not a cold analyst, since I’m reasoning like this in the NT-world*. But... it works. For people with autism things work in a completely different way. Yesterday, amongst autists, I tried to break a silence in the way I’d do it with my NT-friends, since it’s socially desirable to not drop silences. Later, I realised, ‘These are fellow autists. They probably think silences are fine, because they constantly think of other things, just like I do.’ Another eye-opener.’

Kimberley:

‘Especially oral communication is difficult for me. Communi-cating is easier in writing, but even that takes some effort. In written communication I especially experience difficulties in structuring what I write.

Oral communication is always laborious. In the moment I often don’t know how to respond to someone; I usually realise how I should have done it later on. That’s pretty tiresome, especially when it happens in important conversations. I am easily taken aback by a question, and end up being unable to talk any more. My head freezes, so to speak. Sometimes I notice that I take things differently than the way they were intended. I will then respond, but only later realise that the answer wasn’t appropriate for what the person meant. I think it’s a shame that there are so few people who will say, ‘I didn’t mean that’, and so many people who just drop it. I don’t have examples right now, though. Maybe I’ll think of something later, but usually these instances are just too painful for me, and I would rather not share them.’

Hans:

‘I often don’t know what to say in real-life situations. I am much better at communication through email etc. I also notice that I can enjoy serene silences during conversations in certain circumstances (these serene silences feel differently than the awkward ones, which also depends on the company).’

Anna:

‘Lately I have more contact with people whilst walking my dog. Yesterday I even chatted a little with a girl who apparently doted on dogs (admittedly, even a conversation with a child can frighten me). It’s stupid to be so nervous when unknown people start talking to you.

It’s been two months since the end of my social skills training (SST). I’ve probably learnt something from it, but I don’t yet put a lot of it in practice. Talking to strangers and other strange people still isn’t a hobby of mine.’

*NT stands for neurotypical, the normal world.

See the chapter ‘Neurotypical’ for more information.

Comorbidity

There are many people who have another diagnosis, in addition to their ASD. This phenomenon is called comorbidity: having two or more chronic disorders at the same time.

Amongst others, disorders that often occur with ASD are:

- ADD/ADHD: Attention Deficit Hyperactivity Disorder
- OCD: Obsessive Compulsive Disorder
- Gilles de la Tourette syndrome
- Depression
- Anxiety disorders
- Addiction
- Eating disorders
- Psychosis
- Behavioural disorders
- Mood disorders

The difficult thing with comorbidity is that it can mask ASD. It can also be the other way around: ASD might mask another disorder as well. As a consequence, ASD might not always be discovered, or discovered in time or another disorder might stay hidden.

As I’m writing this, I’m thinking about Tourette syndrome. I’ve been suffering from Tourette syndrome since I was seven years old – I was officially diagnosed when I was 29. This masked my ASD, because there are many similarities and overlaps between the two, and the characteristics that are part of both Tourette and ASD were said to be caused by my Tourette.

Sometimes a disorder can develop as a result of ASD; this is often the case with depression. People with ASD can be under so much stress, adversity, and incomprehension that a depression is almost inevitable. I personally was ‘granted’ some depressions as well. I’ve learned from it, though: by setting boundaries in my life I’m able to prevent a next depression. For instance, I no longer go to birthdays, simply because it takes too much energy. I work part-time and divide appointments throughout the week, instead of all on one day – something I used to do.

Hans:

‘I’m not comorbid; sometimes I’m just morbid.’

Kimberley:

‘Officially, I don’t have comorbid disorders. But that doesn’t mean that they’re not actually there. In my family, ADHD and dyslexia occur a lot. I was tested for dyslexia, and the test said I didn’t have it. But I thought the way it was tested was weird, and the lady who tested me made me feel a bit uncomfortable, so I’m not sure if I have actually don’t have it. Through my studies, I know a thing or two about dyslexia. For instance, automatic processes in the brain are difficult for dyslectics: it simply takes longer for dyslectics to know how to write a certain word. That’s why it becomes more and more difficult to diagnose it at later age. I know I make less errors in my writing now, because I’ve learnt how to write them. However, when I reread some of the writing assignments from my first year in secondary school... Those were riddled with mistakes. And that was after having them checked by the spell checker.

I don’t think I ‘fully’ have ADD or ADHD, but I do know it affects me a little. I notice that I have difficulties focusing, especially when I’m studying. I’m also a terribly associative thinker – I can easily associate with any and every word – and I keep losing track of the material I was studying. I’m not that good at sitting still either, because I feel like I have to do this, and then do that, before actually sitting down and doing what I’m supposed to be doing. I take after my mother (who has ADHD), and it really annoys me. Because all those little instances of ‘I quickly need to do this’ take up a lot of time when added up.’

Natasja:

‘The combination of autism and migraine is incredibly difficult. Because of my autism, I tend to get over-stimulated and stressed out, which gives me migraines.’

 Details

Being someone with ASD, I’m one for details. Sadly, this often leads to annoyance in people around me.

My observation of details becomes most visible when you’re talking to me. When someone tells me something, I will trail off, thinking about the details. This leads me to take the story completely out of context, and I no longer know what the person wanted to tell me in the first place. The worst-case scenario is when the person I’m talking to no longer remembers what they wanted to say.

When I listen to a story, it comes to me in parts rather than as a whole, literally word for word. A story of 333 words, for instance, doesn’t come to me as a story, but as 333 separate units. These units have to be merged together into sentences in my head, and only then into a story. When I don’t understand one unit, I feel like I have to clarify what exactly that unit means, because otherwise I won’t understand the story. In one way or another, my brain is programmed to absorb each piece, each detail, of a story. For me, a story is complete only when all of the pieces make sense. So, let’s say someone tells me something that consists out of nine ‘pieces’ of a puzzle. If the top right piece is missing for me, then the essence of the story is lost for my understanding, because the story isn’t complete.

The difficult thing is that, if I keep interrupting someone to ask them for clarification about a certain part of their story, they aren’t able to finish their story properly. This used to happen a lot, and I started to annoy people in doing so. I’d ask them to explain every single detail of the story. This also made me a difficult student in secondary school, because I would demand a lot of attention by asking so many questions. That is just one example of the ‘different’ ways in which I process information.

I’ve been trying to reprogram my brain for some time now. When I’m in a conversation with someone, I force myself to let the other finish completely. If I don’t understand a detail of their story, I tell myself to let it go. It definitely takes a lot of effort, but I am able to do it! And I’m proud of myself for doing so. Of course, it doesn’t always quite pan out, but I try to interrupt them friendlier than I used to. I’d say something like, ‘Would you mind if I interrupt you for a moment? Otherwise I won’t understand the story.’

In short, I adapt. I’m convinced this leads to a happier life for me. The slogan ‘they’ll have to take me the way I am’ sounds nice, but it doesn’t work like that in practice. As long as I feel that I remain true to myself and feel better by adapting my behaviour slightly, I don’t have any problems with it.

It must be said, though, that the way in which this focus on details surfaces differs from person to person. For an autistic friend of mine, for instance, it’s much more visual. When he’s been into a room he had never been in before, he’ll still remember every little thing he saw in that room afterwards. When it comes to details, I’m more focused on sounds.

A while back, I was in the theatre to see a show of a comedian. At a certain moment, my friend said, “I’m so distracted by the fact that one button on his shirt has a different colour than the others”. When I looked closely, I saw that he did indeed have one different button. He was wearing a shirt with five buttons, four of which were black, but one was red. I hadn’t even noticed. Another example is that I showed him a video of a couple of friends on my phone, when he told me. ‘Gee, they have a nice coffee-maker!’ It was a small detail in the background of the video. Being either focused on auditory or visual details can be incredibly exhausting.

Because of my fellow autists, I started to pay attention to details even more. I can use the visual details for my photography (one of my big passions). I really would like to stress that noticing details can work positively as well. I can be found by a river or canal bank pretty often. I’ll be on the lookout to take photographs of insects, using my macro lens. I find it incredibly fascinating to see these little creatures on my computer screen. Things you can barely see with the naked eye are suddenly enlarged. That’s something I can really revel in, something I really enjoy.

Sandra:

‘I can really get stuck on details, thinking about them a lot. When I want to continue talking about these details, the conversation has already taken a different direction pretty much every time. I try to refrain from going back to the things that have been talked about already, but I do have to think about that and control myself. Sometimes I think it’s really sad that I’ve become so aware of this, because it makes me less spontaneous.’

Natasja:

‘I find that I notice things that many other people miss. When walking through the woods, for instance, I see the smallest creatures and plants. I do like it, but sometimes it’s very exhausting to see so much. When it comes to sounds, I always hear everything as well, while others only hear it when I point it out to them. When cleaning, I have learnt to be a little less nitpicky. If I have to wait until I have the energy to actually clean everything properly, I’ll never do it. Plus, it’s difficult enough for me to keep things tidy as they are.’

Hans:

‘I also notice details really often. I like them especially when it comes to music, and I think I have the same for nature. Although, I don’t really like going outside, so I’m not confronted with the ‘Great Outdoors’ all too much. When someone says something funny without intending it (which might not even be related to the contents of what they’re saying), due to their phrasing, for instance, I can crack up a little. But it must be noted that, when phrasing is unclear, I get caught in trying to figure out the meaning. Details can be fun, but when I have to make sense of chaos – cleaning my house, for example – getting so caught up in details can also work as a burden.’

Kimberley:

‘I tend to notice many details, and sometimes that’s cool. We have many birds in our neighbourhood, and I can really enjoy just lying in bed in the morning, with my eyes closed, listening to the birdsong. I also like seeing birds searching for little twigs in the garden, or seeing little lambs jumping around in the grass when I’m on the bus. I hear a lot in music as well. It’s very handy when I’m playing, because I don’t need to count. I know I have to play when I hear a certain instrument do a certain thing. That is, however, also the drawback: if that person isn’t there, I can no longer play accurately.

Noticing these details can be incredibly exhausting. The university I go to has free Wi-Fi, which it says on these blue, flickering lights in one of our lecture halls. It kept distracting me, because I saw every single flash. I’m really happy they changed them to green lights that are on continuously.

Sometimes I can lose the overall picture because I’m so focused on details. When I don’t understand something in my study material, I’ll look it up in a book or through Google. It happens on occasion that it’s still not entirely clear to me, and I’ll keep searching, even though it isn’t always that important.’