Brain Deceives (Brein Bedriegt) – Book

This book explains a lot in detail what is going on in the mind of an autistic person. It is in many aspects so near to my experiences in life, that it became sort-of a guide or a bible, how I work inside my brain. I got to give credit to my psychiatrist for giving me the title to this great book called “Brein Bedriegt” by Peter Vermeulen.

You will be able to read a few rough translations straight from the book, that especially apply to me, but most likely also to a lot more autistic people, besides me. I have left many citations as whole, to be able to get the full context. This does not mean all the details in that citation will all apply upon me or any other person with autism. There are so many variants of autism and comorbidities, giving different results and behaviors.

If you are having autism or you are connected with it, this book is totally worth reading. It is for as far as I know only available in Dutch, so I have taken the liberty to translate the most important quotes, which I find most applicable towards me..

I have read the 1998 edition and the revised 2013 edition and have tabbed + colored many pages of the books to have easy access.

Legend:

The pages (based upon 2013 edition) are marked down in different colors:

• Yellow : Informative.
• Green : Possible to live with, already used to it, no big deal.
• Orange: Not so easy to live with, coping situations or still having difficulties.
• Red: Absolutely a problem in life without having any good solutions.

Some noteworthy quotes:

Foreword

“I have always been convinced that the typical information-processing-style is the essence of autism.” p.11

When autism is called Asperger

• “Compensation or camouflage is one of the many factors which can decide a role in variations of functioning. Motivation is for example another important reason why people could behave differently in different contexts” p.17

More equal than different

• “The comparison between autism and Asperger-syndrome is much bigger than the difference” p.38
• “Of’course there is diversity within the autistic spectrum” p.38

Is a distinction meaningful and useful?

• “As a starter, the term ‘Asperger’ has not broadened the image of autism. On the contrary; just because of the popularization of the term ‘Asperger’ a lot of people have been connecting ‘autism’ to people that got less possibilities and are more ‘disturbed’ in their development and functioning” p.41-42
• “It is not only a diagnostic label that a lot of people and many parents feel more comfortable with than with the diagnose ‘autism'” p.43 (oh, it’s only Asperger!) p.43
• “The world is not ready for them and they are in the minority” p.43-44
• “Those people may identify themselves like before to their own definition” p.44

When autism is difficult to recognize

Compensation and camouflage (cloaking)

• “Camouflaging means hiding or cloaking of shortcomings” p.56
• “A well known camouflage-strategy is to avoid situations where those shortcomings would become visible” p.56
• “So people with autism (again, just like any other person) will avoid situations which are difficult to avoid or circumvent those by calling all kinds of arguments” p.56
• “A very handy argument is that of ‘Not interested'”p.56
• “To circumvent situations and disguise shortcomings, intelligent people with autism have an entire arsenal of arguments” p.56-57
• “For people with autism, even the intelligent, it is often very difficult to know if someone means something literally but yet figuratively and what that somebody means when he or she uses vague terminology” p.57
• “Another strategy to make the shortcomings of autism less visible is to compensate” p.57

• “From scientific research it has appeared that intelligent people with autism will compensate their lack of social intuition with intelligence:”p.57
• “they will start reasoning social situation, behavior and people and intellectually analyze them.” p.57
• “The quick and unconsciousness assessment of situation will not be possible for them, but when they get enough time for it, they will calculate how they behave themselves best. Intelligent people with autism are masters in reasoning and storing ‘scripts’, scenario’s, formulas and rules” p.57-58
• “The skills which normal and high intelligent people with autism show in test situations, do not reflect the absence of shortcomings, but often industrious and courageous attempts to overcome their shortcomings.” p.58

Limitations of test-research and questionnaires

• “Those that do not know autism well, often do not know where to start” p.58

Continue asking, continue asking and keep asking

• “The camouflage and compensation of autism requires a certain age.” p.63
• “With adults it often gives details by requesting the school-results” p.63

The environment camouflages also

• “From their parental instincts to protect and help their son or daughter, parents often help unknowingly and unwillingly their autistic kids to camouflage their shortcomings” p.64 – this happened when stressed
• “she made every morning before going to work his lunch (‘else he eats always the same’) and prepared all clothes the evening before (‘else he will wear the craziest combinations and will not take the weather conditions in account’) p.65

Better functioning? High functioning?

• “And what makes it all more confusing, is that people with autism have perfect achievements in many areas. They have an excellent memory, they know about certain subjects much more than a normal person, are good in math or languages, got a logic reasoning ability which most people can only dream about and got an eye for detail which the most people are blind for.” p.68
• “Their handicap is not easy to see with the traditional ways of measuring” p.68
• “Their shortcomings situate more at other domains: social skills (socially active but naive), communication (they talk better than they can communicate), self-reliance (they can take the train but not pack their suitcase).” p.68-69
• “Thanks to their intelligence, people with autism develop alternative strategies to circumvent their shortcomings, which is a plus!” p.69
• “Many intelligent people with autism get their diagnose in late adolescence or even when being adult” p.70 “On that age such diagnose does not make it easier: awkward life experiences, many frustrations, trying to survive through sophisticated compensation- and camouflage-strategies and additional problems like depressions and anxieties trouble the image more than ever” p.70

When the brain is smart, but at the same time also blind

• “The same behavior can have different causes with different people of autism” p.71
• “But a social-skill training will not offer much when an adult with autism knows how to communicate but not dares to” p.71

Understanding autism from the inside-out

• “The theory of a weak correlation (central coherence) states that people with autism have difficulties to integrate information in a bigger whole or correlation;” p.72
• “The theory of an inadequate (theory of mind) states that people with autism cannot easy move inside other people: what people know, think, feel, expect etc. People with autism lack empathy. A recent variant of this theory regards autism as an extreme form of the male brain, where a weakness in understanding people goes together with the strength of understanding systems” p.72-73
• “The theory of disturbing the control and executive functions states that people with autism have difficulties with thinking processes, essential for planning, adapt, change and control actions and thoughts.” p.73
• “Autobiographies and testimonies of adults with autism have brought to attention that sensory problems (hyper- and hypo-sensitivity, as well over- and under-sensitiveness) are not a minor role in the daily problems of people with autism. p.73

School-wise, but therefor not world-wise

• “That context-blindness has nothing to do with classical intelligence or with logical thinking. It appears on the first sight impossible that the brain of people with high-functioning autism, how smart that person may be, is not capable to understand simple things well enough” p.76
• “People with high-functioning autism are sometimes amazingly well in logical analyzing of complex problems, but to bring that analysis into concrete actions does not always succeed for them.” p.77
• “An important aspect of a healthy mind is to be able to assess what is important and not, that is something which people with high-functioning autism have difficulties with.” p.77
• “What is important, is not absolute and is not fixed.” p.77

When communication is eloquent, but not obvious

A huge vocabulary is not enough for a good conversation

• “The drive to communicate is often limited. There is insufficient attitude to communicate. People with autism signal often not enough or don’t communicate when necessary, for example when there is a problem” p.82
• “That they often do not communicate about something which is important, has often as fact that they cannot easy estimate what other people know, don’t want to know or want to know” p.82
• “The pragmatic aspects of communication have a link with the social use of the language: the ability to bring a message as good and efficient possible to others” p.83
• “People with autism have difficulties with the switching role of talking and listening, by taking turns in a conversation. It can happen a person with autism does not react on a question or remark. That gives sometimes the impression that they are not interested, but that is not so. They are not conscious enough that others expect a reaction from them” p.83
• “On the other side, they often react to a message which was not meant for them”
• “They often give a small amount of feedback and often you do not know if they understand your message. They don’t signal always when they do not understand something or it often shows late that they understood the message differently or not. What is also an obstacle for them, is to choose the right information, adapted to what the receiver already knows or not. They can give too much information and tell something which they said shortly before or something which happened with you together” p.83
• “More often it is that they are giving not enough information to understand their message well enough and often it will take a long time before you can understand what they are talking about” p.83
• “They often have difficulties to adapt the style to the context. People without autism do that intuitively: at home you talk different than at a solicitation, or in the bar different than at an important meeting, in a conversation with your neighbor you change your style than when talking to a total stranger. ” p.84
• “People with high-functioning autism have a very limited range of communication-styles: if they talk with a lawyer or with a farmer, their style is often identical. Some are very formal, also in informal situations. There are also some who adapt their style, but it feels mostly superficial, because it’s literal imitations of the behavior of others.” p.84
• “It doesn’t look good, but it feels not personal or even clumsy.” p.84
• “You can get the feeling that they are disturbing at the most unfit times with apparent not important information or all kind of futility.” p.85
• “When they focus upon communicating, it is rather towards the content than how to bring it, it is rather what they say instead of how they say.” p.85 – when stressed
• “They can announce you on exactly the same ‘newsreader-tone’ a fait-divers which is very emotionally. But also the other way around: something which is for us a normal daily frustration can been told with so much vigor, that the listeners will overestimate the situation.” p.86
• “The usage of words of someone with autism can come over very creative and originally” p.87
• “Hans Asperger let himself be tempted by the usage of words of children in his clinic and described it as rich, original and spontaneous. What he did not see, was the unfit choice of words, the inability of what the children were expressing in a language understood by everyone.” p.87
• “Diverse studies have shown that, despite having a relative good memory for facts and things, people with high-functioning autism have a weakened episodic memory. Their life is more a sum-up or a sequence of detailed pictures instead of a movie where you are the main character.” p.90

When communication goes too fast

• “Changing the attention towards a new conversation topic or new conversation partner is for people with autism far from natural.” p.92
• “Apart from the speed in communication is listening for people with autism sometimes also difficult because of sensory overload” p.92
• “Often they make on a basis of past experiences a kind of internal script of events. With other words: they know the routines. A verbal message does not add information, which makes them respond rather based on routines than based on a message.” p.93

Difficulties understanding of what has not been said

• “Communicating smoothly expects that the messages are understood like they are meant.” p.100
• “Communicating with people with autism, how eloquent they can appear, is often not natural.” p.100

When social relationships are more reasoned than intuitively

From aloof to pompously

• “The passive group shows a somewhat different image. To the contrary of the aloof group we see with them often different diagnoses than autism: mostly atypical autism, but sometimes also Asperger-syndrome. People from this group will seldom initiate interaction by them-self, but they accept on a passive way the approach of others. With an amount of people from this group, the problems start to show up as soon we expect more initiatives from them. This group is often not spotted in early diagnostics: because of their passiveness they are children that do not get noticed like the children from the aloof group, but often appear less disturbing than kids that take active contact in bizarre ways.” p.103 – mostly when under stress
  

• “The active-but-bizarre group takes very actively initiatives to social contact. The way how is although naive, strange, not adapted and one-direction, because of the problems with understanding interactions in a smooth way.” p.103
• “Conversations with these people limit mostly in asking the same questions over and over or to continue focusing upon only one topic” p.103-104
• “People from this group are often not spotted in early autism diagnoses, but are often stamped with a label as stubborn, behavior-troubled, asocial, troubled or get the label ‘ADHD’ or ‘appositional disorder ” p.104

• “At the high-flown/pompously group there are social problems, although at the outside and at first sight, very subtle. We find this sub-type most often back with people with high-functioning autism and many under then had/get a diagnose as Asperger-syndrome, however the descriptions of Hans Asperger reflect as well, if not not even more the active-but-bizarre type.” p.104
• “People from the high-flown/pompous group had often as child problems with social interaction and can belong in one of the previous types. By their intellectual possibilities they know mostly to compensate and camouflage those difficulties. In the literature it is often described as ‘evolution’ and that’s what it is. It doesn’t include real progress in social development, but rather having to learn all kinds of alternative strategies to pretend to be normal and to survive most optimal.” p.104
• “The issues with social communication are huge but very subtle and often only noticeable for a well-practiced hearing. People from this group are called pompous by Wing because they are often pedant, pompous, too polite, too formal and can appear to be too wordy. Just because they are so dependent of (social) scripts, they have troubles when people deviate from what the script tells. They can appear very compelling and pedantic” p.105
• “Because the troubles are often getting visible for those who have a good connection with them, people from this group have little or no real friends. Their social problems are often getting visible in relationships where spontaneity, empathy and emotional support are needed. They cannot give satisfaction towards those requirements. For example: they cannot judge what the impact can of their activity at their partner or other family members and will put more time and attention to their defined interest (like bringing work back home, certain hobbies) than in their relationship.” p.105
• “Outdoors they appear to accept changes quite well, but it are mostly the breaches in habits and routines of themselves, which can lead to childish and incomprehensible tantrums of anger, even aggression, which then stands in stark contrast to their ‘good manners’ and politeness outdoors.” p.105

Friendship

• “A lot of kids with autism have a naive image of friendship: often kids with autism see a bigger intimacy behind a smile or a friendly word than really meant. ” p.111
• “Somebody who is friendly for them, can in that way get entangled in a kind of ‘pursuit’ because the person with autism sees in them a friend and wants to do things together, like real friends do that according that definition.” p.111
• “The naive or autistic image of friendship can have negative consequences for themselves. Most people with high-functioning autism are, just like their high social motivation, very scared to hurt others or to disappoint. Others can abuse that. When somebody with autism takes a laugh in hyper-selective way as evidence of friendship, it is already enough to smile and you can as manner of speaking let him do what you want.” + “Just like they do not understand when somebody is a friend, children and young people with autism have difficulties to see when somebody is not a friend.” p.111
• “People with autism can become victim for bullying classmates. Research has shown that children with autism are more often bullied than other kids, especially in normal education. Teens and young-adults are often ridiculed, excluded or even bullied for their strange way of making contact. Not only high-functioning children and young people with autism are bullied more than others, but they can also see the behavior of other classmates which was meant good like teasing, see as bullying.” p.111-112

The only rule in social traffic is: there are no fixed rules

• “In the book Unwritten rules of social relations of Temple Grandin and Sean Barrin is rule no. 1: Rules are not absolute: they are dependent of people and situations.” p.119

Survive in the social jungle

• “They lack the intuition and context-sensitivity which is needed” p.119 “to understand the subtle, invisible and continuous changing rules of human interaction and stay therefor, also and especially at social abilities, misfits.” p.119-120

When interests and activities are not limited but limiting

• “Everyone knows that next to the shortcomings in social interaction and social communication, autism is branded by a limited and repetitive pattern of behavior, interests and activities.” p.121
• “When it is about autism, many people also like to have ‘everything in order'” p.121

Specific Interests

• “On the contrary what many people think, it is not that people with autism have only one interest, often called ‘fiep’, ‘obsession’ or ‘fixation’.” p.124
• “The researches found a wide variation of interests and the most of them were quite normal.” p.124
• “What was noticeable, is that collecting and memorizing facts, like brands of cars, songs, data of electrical machines and disasters were very commonly present, as well the fascination of visual things like making dragons with Lego-blocks, building all kinds of constructions, drawing certain topics.” p.125
• “If we spread the interests over the three kinds of knowledge and science, that picture is very divers and not unusual, considering the asked group were majorly males:
  • Alpha-interests: interests for products of the human mind, the cultural, like books, TV, movies, music: 37%;
  • Beta-interests: interests for nature, technique, math or other domains from exact or positive science, like fauna, geometry, numbers, the weather, computers: 43,5%
  • Gamma-interests: interests for society, social or psychological topics, like esoteric, autism, self-analyzing, politics: 19,6%” p.125-126

Refuge and life buoy

• “A fixation is also an excellent way to escape stress of daily life. By fully zooming into a certain topic you can close yourself from the hectic life of every day.” p.129
• “Connecting the previous: retreating in a fixation can also be a strategy to escape insecurities and anxieties.” p.130 “We often see that the rigidness of people with autism increases at moments of stress and insecurity. The stereotype interests are for people with autism often a refuge and a life buoy.” p.130
• “Fixations can answer or come from a need for predictability ” p.130
• “Fixations fulfill with some people with autism also the function of creating their imago.” p.130

When variation does not spice up life

• “The stress lies at people with autism often different, because they are staying awake of other things than people without autism, often with details which are side details or issues” p.132
• “The scripts in an autistic brain is different as well: they are less context-sensitive and therefor less flexible.” p.133-134
• “In contrary to people with low-functional autism, people with high-functional  autism can see quite fast a pattern and build upon that. This goes sometimes surprisingly fast. It often suffice to do something two or three times and the pattern and additional rules are formed.” p.134
• “This pattern they won’t explain clearly, but it is there: in their head. As long nothing happens which is in conflict with that pattern, you will notice nothing of the existence of it as outsider.” p.134
• “But if the pattern is suddenly violated, or something exceptional happens, you will notice the resistance and rigidity. Someone with autism will protest, refuse or continuously question the change.” p.134-135
• “Fixed routines, fixed times, certain routes and rituals are all to create order in a life which you cannot trust because there are no fixed scripts and patterns which are continuously and unpredictable changing.” p.136
• “Switching from one situation or activity to the other does not always happen without troubles. Sometimes people with autism make the bridge in a for us incomprehensible tempo. But there-in is just that resistance against changes: they need time to change or oversee the new situation, to run the pattern in their head and -if needed and possible- adjust.” p.136

When life is frightening and threatening

Fear

• “An important source of fear for people with high-functioning autism is the social happening. The many invisible and continuous changing social rules make it for people with autism not easy, and those that want to do it good, make themselves huge concerns about the social situation because they are afraid to have a social disaster, like many times before or are anxious to not be able to assess the behavior and reactions of others well enough. It is surprising to declare how much energy people with high-functioning autism put attempts to ‘try to be normal’.” p.143 “Our social world is for people with autism a ‘social minefield’, that especially for people with high-functioning autism. Their action-terrain is bigger than that of the people with low-functioning autism and come easier in contact with unprotected situations.” p.143
• “We see fear especially get visible in unstructured special moments, like breaks, free time, getting into audience, public transportation. Group activities are also a huge form of stress. Learning social skills does not help enough. There are too many exceptions and nuances. People with autism often get quiet if they now and then can escape from the social jungle.” p.143 “People with autism, also the high-functioning, have often the need for a ‘social holiday’: to have various times for no need to be social.” p.143

Depression

• “When somebody with autism is in depression, specialized care is recommended. After all, a depression forms at people with autism an extra risk, like the risk for self-mutilation and suicide-thoughts.” p.148

Aggression

• “‘People with autism get very angry because the frustration of not being able to understand the world is so horrible – sometimes it gets them too much and then people say they are surprised when I get mad'” p.149
• “In essence people with autism are not aggressive, and at intellectual and theoretical level most know that aggression causes damage to others. Despite theoretical ethics we see regularly aggressive outbursts. Even with people with adult with high intelligence, tantrums can happen, like we know as with the kids with autism.” p.149
• “Those tantrums are at moment when the bucket is full (often by seemingly a small incident) with, for the outside world invisible stress-experiences, making it flow over.” p.149
• “In contrary to the people with low-functioning autism which are often at young age put in a protected environment, people with high-functioning autism are more naked to the complex demands of our world. The world means to then a bigger treat and they cannot always handle that. Fear, depression and aggression are a consequence of that. Less words, less social pressure and especially making the environment autism-friendly: those are the facts which we got to think about first when people with high-functional autism are in trouble.” p.152

When just asks for extraordinary approaches

Overestimating

• “Because their brain deceives, people with normal-functional autism are often overestimated. The opportunity with overestimating adds up, depending their behavior approaches the normal standards. The autism is so invisible it is lost out of the eye.” p.154
• “Those compensations put us at the wrong track.” p.154

Underestimating

• “With people with autism it is always difficult to measure what they can and can’t. With people with normal-functional autism that is even more difficult. Continuously we get put on the wrong track. Now we underestimate them, because we see too much of the autism and not enough their intelligence, resilience and their talents. Then we are blinded by their intelligence and we don’t see the autism enough and overestimate them, by approaching them as ‘normal’. It is not simple to find the right approach. It is dancing on a slack rope.” p.154

Not less, but clarify even more

• “People with normal-functioning autism ask more and different questions, more detailed. Who wants to offer clarification, has to take that in account. In contrary to what might be thought, people with normal-functioning with autism just need more clarification than the low-functional.” p.170

Give enough information, but dose well p.170

• “The danger exists that people with autism are receiving too much information which they cannot handle.” p.171

The Socratic method

• “By their intelligence, people with high-functional autism, especially teens and adults do not want to be treated as a child and often hate it to get affairs imposed upon them. They do not like that others are going to determine and dictate what they have to do.” p.174

Compensate, do not correct

• “Solution-wise support in autism means that we not try to correct the autism, but try to search for solutions that work. And often that means that we got to search for all kinds of strategies and tricks, where the tiresome and less pleasurable consequences of autism can be circumvented.” p.179

Last update:

• 02 may 2016 @ 08:08