Contents:
• Neurodiversity
• Autistic pride
• Reading facial language
• Masking (aka "social mimicry")
• A related topic is introverts
• Professional assessment
• My characteristics in detail
Neurodiversity
This word means that different people's brains work differently. It is impossible to find two identical brains. The naturalness of this statement is quite easy to understand if you think about how much diversity there is in human nature. Different people have different skin and eye colors, different heights and different ear shapes - what can we say about such a complex system as the brain? There is no single "right" way when it comes to how we think, learn and behave. It's really quite strange how some differences are ok and others aren't.
The term "neurodiversity" refers to variation in the human brain regarding sociability, learning, attention, mood and other mental functions in a non-pathological sense. It emerged as a challenge to prevailing views that certain neurodevelopmental disorders are inherently pathological (see Medical model of disability) and instead adopts the social model of disability, in which societal barriers are the main contributing factor that disables people. This view is especially popular within the autism rights movement.
From Autism and Neurodiversity:
"Neurodiversity is the concept that there is diversity in how human brains are wired and work, and that neurological differences should be valued in the same way we value any other human variation.
Everyone one of us is different. There is an inherent diversity of the human condition and neurodiversity refers to variations in the human brain regarding learning, mental functions, sociability, mood and attention.
The term neurotypical can be used to describe the dominant social standard. Neurodivergence refers to neurological differences that are seen as being outside of what is traditionally recognized in society to be the cognitive (or neurotypical) norm. As such it represents a deviation from the dominant social standard. Examples include many neurodevelopmental diagnoses such as Autism, ADHD, dyslexia, dyspraxia, intellectual disability, schizophrenia and some mental health conditions like bipolarity and OCD.
The Neurodiversity Movement is a social justice movement that began in the 1990s, seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent. The term neurodiversity was developed in 1998 by Judy Singer, an autistic sociologist, and was quickly adopted and expanded within and now well-beyond the autism activist community."
The traditional ("medical") model defines disability as a health disorder. Accordingly, the minimization of violations is carried out through medical intervention and therapy. With this approach, disabled people are the problem, they must be "cured".
The social model determines the cause of disability not in the particularity itself, as such, but in the physical, organizational and "attitudinal" barriers existing in society, based on stereotypes and prejudices. Under such a model, a disabled person is not a "bearer of a problem" requiring special education. On the contrary, problems and barriers in the life of such a person are created by society. That starts with the imperfection of the public education system, which is not ready in a general school to meet the diverse needs of all students.
Pay attention to the last phrase. Alas, neither the learning process, nor the knowledge assessment system take into account the peculiarities of autists. Therefore, they may have poor grades and a corresponding reputation among teachers and classmates, which is absolutely not in line with their real intellectual abilities. When I was in college, I couldn't study the material in class - there was too much distracting stress. I always prepared for subjects in advance - at a pace that suits me and in the familiar home environment. As a rule, I came to the first lesson of each subject after reading the textbook and writing out the main points in a notebook. For me, classroom study was just an additional step to consolidate the already known the material and ask teachers questions. This allowed me to keep up with my neurotypical classmates, who were great at accepting new material in a crowded classroom. I graduated from college with excellent grades, and smiled at my graduation photo like everyone else - no one even suspected what difficulties I had to go through.
From the already mentioned video:
"The neurodiversity paradigm is an alternative way of thinking about autism. It describes autism as a part of the range of natural variation in human neurological development. At its very simplest, autism is a different way of thinking. According to the neurodiversity paradigm, there are no right or wrong brains. All forms of neurological development are equally valid and equally valuable. And regardless of what type of brain you've got, all people are entitled to full and equal human rights and to be treated with dignity and respect."
From the video Neurodiversity – the key that unlocked my world:
"It is a neurological difference, with a vast spectrum of representation within its population. It can come with remarkable gifts and skills, as well as devastating traits. But autism doesn't necessarily equal disability. And thankfully, today we have a word that challenges this negative terminology: "neurodiversity." Neurodiversity describes how diverse we are as human beings, from a neurological perspective. It suggests that the many variations of human brains, like autistic ones, should be accepted as a natural and valuable part of humanity's genetic legacy."
Neurodiversity in a bit more details:
It must be said that there is also an opposite view of the pathological nature of autism which says that the neurodiversity idea doesn't reflect the realities of individuals who have high support needs. A common criticism is that the neurodiversity paradigm is too widely encompassing and that its conception should exclude those whose functioning is more severely impaired. Read more about this in the article The danger of 'neurodiversity'.
Autistic pride
Some people mistakenly believe that suggesting that autists should be treated with respect means that they think they are better than neurotypical people. The concept of "autistic pride" is often cited as an argument for this view. In fact, this concept has nothing to do with the idea of one group being superior to another, quite the contrary. It is like LGBT pride or black pride, which means that people refuse to be ashamed of their characteristics, which in some communities may be considered bad.
From the site aspergers.ru:
"Imagine a world where all discussion of homosexuality is about finding a cure for it, not the social injustice that prevents homosexuals from living happier lives. While this metaphor is far from perfect (it is obvious that homosexuality is not associated with many of the limitations that autistic people face), it is in such a world that autists now live. The neurodiversity movement transfers the concepts of self-determination and equality that our society extends to people of different races, religions, gender, sexual orientation and other types of disabilities, to the fact that people are also born with different kinds of intelligence. Instead of asking, "What should other people think we should be?" we ask the question, "What would we like to do with our own life?""
From the video Autistic People Aren't Broken NeuroTypicals:
"Unfortunately, there is a lot of messaging from society to be ashamed of things that we have no control over. Many autistic people will struggle to think about themselves in a positive light, especially as society continues to say that they should be ashamed of being autistic or that autistic people are weird or need to be fixed, in order to fit into society. We need autistic people to be able to have pride in themselves. I needed to have pride in myself, in order to be okay as a human being. I'm here to tell you you're not broken. You don't need fixing. You're beautiful, and amazing. Stop listening to those people who just want to sell people things based on the idea that autistic people are broken. We're not broken. Those opportunists should be ashamed of themselves."
The rainbow infinity symbol, which denotes neurodiversity with infinite variations:
Jun 18th - the Autistic Pride Day
From FB:
"Those who don't understand Autistic Pride might ask, “How can you be proud of something you have no control over – like autism?” Autistic Pride Day was not borne from the need to celebrate being autistic, but instead in recognition of our right to live authentically.
The autistic experience colors each piece of an autistic person's personality, sensory experience, and identity. It impacts our interests, how we view the world, the choices we make, and even our ethics. Because of this, many autistic people say that “autism is a part of who we are.”
So Autistic Pride Day is not just a celebration of being autistic and belonging to such a vibrant, beautiful community, but doing so in spite of the messages society sends that we should be ashamed of who we are."
From Autistic pride, openness and silence (Russian):
"Today, June 18, the autistic community celebrates Autistic Pride Day. Despite common stereotypes, in this case, the word "pride" does not mean "hubris" or the idea of superiority of autistic people over others. Pride is almost synonymous with acceptance. When we talk about autistic pride (or gay pride, or black pride), we don't mean that people perceive their belonging to a certain group as a personal achievement, but about the fact that, despite all the discrimination and stigmatization that they face, they are not afraid to be themselves and openly declare that they are who they are."
One of the most interesting and important videos about autism I have ever watched (transcript):
And the next video is very important too. It explains that "pride" is juts the opposite of "shame":
Reading facial language
Above I wrote: judging by people I see around (although I may be wrong), the real number is clearly higher. Probably, you thought: "How do you know? Autism is not written on their faces!" Well, I don't even know how to describe it... Apparently, I read some barely noticeable signs, and recognize some special way of speaking and looking. So, it is written on their faces! :-). Have you noticed how Freddie Mercury, Mark Zuckerberg and Elon Musk behave in their video interviews?
- They speak with a neutral ("stone-like") "robotic face", which most of the time does not express any emotions or expresses them weakly, although the content of what they are saying is very emotional (by the way, this is the source of a common misconception that autists have no emotion and are incapable of empathy, while the opposite is true - many autists feel emotions much more intensely than other people). They rarely smile or laugh, and when they do, it's sometimes not very natural - they just know they're expected to smile or laugh at that point.
- Sometimes they slow down a bit, stumble and have a hard time finding words. They may be silent for a few seconds to formulate a thought before saying it out loud.
- They look away from the camera and even turn the head away at all (apparently the fact that many autistic people cannot look in the eyes also extends to the video camera) while their eyes are constantly moving in all directions.
- They gesticulate or perform other body movements (this is called "stimming").
Masking (aka "social mimicry")
However, autistic people do not always strike the eye. Why? I will quote the video on autistic masking:
"...many autistic people can, and do, mask their autism, sometimes to the point where they seem indistinguishable from their neurotypical peers. So what is masking? Masking essentially refers to an active attempt to conceal your true autistic nature or your real self. There are a variety of ways in which somebody might do this, and different people might use different methods, and some might use all of them, and some might use just one. And some autistic people mask heavily, and some don't mask at all, which is why they "look" autistic."
The girl at this video explains why many high-functioning autistic people live for many years in the dark about their condition:
"I was quiet, I let others make up the rules of the games we played. And it took 14 years for anyone to notice that I was struggling, desperately. For many high-functioning girls, it takes even longer. Why is this? Shouldn't our confusion around other people be obvious to our teachers, our friends, let alone our parents? And what I find is that there is a very simple, if unfortunate, reason for this. It's because of something we do to cope. We do it subconsciously, but it results in us camouflaging our autistic traits, and it is called "masking". Like detectives, we watch, and we listen, and we try to make sense of the things people do and why they do them. It's a hard job. It's exhausting. We work both day and night shifts. The clues often lead us wrong. But we don't have any other choice, because it's our means of coping in a world which is so socially confusing to us."
From Quora:
"I assumed I was an NT and since I was “normal”, I found a way to explain my autistic traits as “normal” too.. or shove the awareness in that black hole of denial and pretend they did not exist. Masking was a tool I used to alter / hide the trait from others… or from myself. I think part of the reason I discovered my ASD was from what I call “Autistic Burn-out” or not being able to mask and deny traits. This seems to happen as we get older and do not have the constant energy it takes to keep up the act of personal and public deception any more."
So, masking is the difference between how people look in social situations and what happens to them inside. If someone has intense autism traits, but they don't show up in behavior, this discrepancy means that there is a masking of autistic features.
There is constant observation, analysis and imitation of neurotypical behavior (i.e., pretending and hiding one's true identity) in order to appear in accordance with the expectations of society. Social behavior is not instinctive, but rehearsed - for the comfort of neurotypical people. This is done purposefully and requires significant intellectual and psychological effort.
What motivates hiding one's autistic traits? Some report that they disguise themselves in order to socialize with friends, find a good job, or meet a romantic partner. Others say they mask to avoid reprisals and to protect themselves from being avoided or attacked, or to be considered "normal".
By the way, I read that autists often become good actors - precisely because they have extensive experience of life "in someone else's role". Freddie Mercury is a shining example. Compare this quiet and humble guy who looks awkward in video interviews with his super-hero on stage - the great, charismatic king that millions of fans are crazy about! Now that you know about autistic masking, the song "The Great Pretender" will be perceived differently:
What does such camouflage lead to?
When using masking, every exit from home is accompanied by pretense and the cognitive effort associated with it. Such an approach can help achieve career success, social acceptance... But at what cost! Behind a relaxed smile hides an endless struggle.
Masking contributes to low self-esteem and hinders self-understanding and self-acceptance. Many say they have played so many roles to disguise themselves over the years that they have lost sight of their true identity. This is discussed in the article 'Masking' for Years Can Leave Autistic People Confused About Who They Really Are.
Perpetual pretense breeds anxiety, depression and eating disorders. Trying to appear socially acceptable and follow the behavior that society expects of them results in autistic people accumulate emotions and experience their explosion inside themselves, and do not splash out. And this does not promote mental and physical well-being at all. The suicide rate of "masking" autistic people who do their best not to stand out is very high.
The tremendous expense of pretending drains the supply of energy. Adults describe feeling completely exhausted (mentally, physically, and emotionally) because they put so much effort into trying to be someone they are not.
The topic of masking is well covered in the article Doing More by Doing Less: Reducing Autistic Burnout.
How do you become yourself again? Unmasking.
The natural question arises: Is it possible to "take off the mask" and stop hiding your true identity?
Sometimes being diagnosed or taking a test stimulates autists to stop masking. Once they realize that they are not "abnormal," that they just have a different neurology than most people, and that, in fact, there is nothing wrong with them, they drop the mask.
This, however, is not an easy step. Trying to be who you really are leads to constant negative feedback. People are forced to live with the knowledge that their self is not welcome in the neurotypical world. People around them who are used to "normal" behavior are often not ready to accept the true personality. People may say phrases such as "What happened to you?", "That's not you," "I'm so disappointed in you"...
From "Help! I'm getting even more autistic" (translated from Russian):
"Rejection of the facade or rebellion against the imposed pattern of behavior
Those autistics who appear normal, or try to appear normal, maintain a façade of normality through a whole set of debilitating strategies. If anything gets in the way of one of these strategies, the whole façade can collapse as a result.
Also, people may spend too much energy on these strategies, and as a result, they don't not even have the energy to realize that they are just pretending. If the façade collapses, the person may not understand what is happening.
Other autistic people consciously decide that "enough is enough," and stop trying to pretend to be someone they are not, or to do what they have been taught to do that are useless to them. If you do this, take into account that while from your point of view you have remained the same person, minus the pretense, from the point of view of others you have suddenly become someone else. This does not mean that such behavior is a bad thing - on the contrary, it is very important that people remain who they are and not pretend - but it is better to be prepared in advance for the unpredictable reactions of those around you."
A related topic is introverts
I once wrote in a forum thread dedicated to introverts:
"What struck me most of all was that whether a person is introverted or extroverted depends on physiology - blood flow paths, types of neurotransmitters involved, and ways of transferring information through them... So psychology depends on anatomy, which in turn depends on genetics. And the way a person was brought up in childhood does not matter in this respect, or influences it minimally (there was an opinion that people withdraw into themselves because they were offended at an early age)."
It seems that I'm starting to rethink that topic... If you replace "introvert" with "autist" in the forum thread, then everything fits together perfectly! Here are some quotes from the internet:
"Autism is the ultimate, extreme loneliness. The autist deliberately isolates himself from the outside world, avoids interacting with people."
"An extreme form of introversion is autism."
"Introverts prefer to be alone for a while, autists have gone even deeper into themselves. In America, being an introvert is considered a disadvantage. Employers and culture in general are extroverted. Extroverts integrate easily."
"Introverts and autists (Asperger's) have similarities. This is self-absorption, isolation, strangeness. Objectively, there is no difference. But it is there. If an introvert can easily interact with the world around him, achieve something, then it will be more difficult for an autistic person, he seems to be detached from this world."
By the way, the word "autism" comes from the Greek αὐτός (autos), which means "self" (compare with "automobile" which means "self-moving"), and the following dictionary definitions of autism can be applied to introversion too:
"a state of mind characterized by the predominance of a closed inner life and active withdrawal from the outside world"
"isolation in oneself, immersion in the world of one's own experiences and detachment from reality"
While many autistic people are introverts, some are extroverts. Likewise, an introvert is not necessarily autistic.
The topic is well explained in the video Introverts & Autistic People - The Key Differences.
Professional assessment
Although it is more than obvious to me that I have autism, I nevertheless asked the family doctor for a referral for establishing diagnosis officially (however, I did not understand for what; on the other hand, why not
So I'm sitting waiting for my diagnosis, and in order not to waste time, I made a detailed description of my symptoms to show the specialist who will assess me. At first the list was short, but then it grew so much that now I'm not sure that the specialist will have time to read it. But not to waste the good - I am posting it here.
[ADDED LATER: After one year and three months of waiting, I had several meetings with a CAMH specialist and officially received the diagnosis:
As you see, the questions were asked not only of me, but also of my mother - to find out what I was like as a child. Admittedly, I didn't send everything I had written, I only sent a brief synopsis.]
Text in italic is not a part of the description - it's just comments for those reading this page.
My characteristics in detail
• I am so concentrated on details that sometimes I don't realize the whole, "big" picture. I "see the trees but don't see the forest". I have difficulty understanding big concepts and causation. I can remember details well, but not notice the larger concepts behind them and not understand why this information is important. When I get a technical task, I become a perfectionist in implementing the details - my program code is clear and easy to read, I check with the technical lead everything that seems illogical or missed to me (this happens quite often, due to which the modules that I create require less improvements and bug fixes in the future), but many times it's hard for me to understand why I was told to do that, and what impact it will have on the business. I am a performer by nature, not a manager - I could never lead people and give them directions.
• It's hard for me to think and process information abstractly - only concretely. I am absolutely stuck when I am asked questions in business meetings if the questions require abstract thinking (and I didn't think about them in advance). If it would be an email I would have time to find some information for the answer. In school, I had difficulty with subjects that dealt with abstraction - for example, mathematics. The situation with physics and chemistry was curious: the theoretical part was clear to me and very interesting (I even read additional popular literature purely for myself), but when it came to solving problems, I was stuck.
• My analytical/problem-solving skills and strategic thinking are very limited. I find it difficult to foresee the results of my actions. Software development is the passion of my life, but investigating and resolving bugs of other developers is a pain for me. It's hard for me to analyze information and draw conclusions from what I find. I cannot highlight the main and the secondary, distinguish between relevant and irrelevant facts, recognize (extract) and summarize important details from the general stream. Very often it seems to me that others see and understand more than I do. As a result, I tend to take other people's opinions on faith rather than subject them to critical analysis. My co-workers, when discussing the high-level design concerns, are looking superhumans to me - how do they do that? How can they anticipate where certain actions will lead?
• I admit absolutely no nebulosity or ambiguity. I need short and clear instructions on what to do, and an extremely precise description of the end result. As the Autism Alert card says, "Tell me exactly what I need to do clearly, simply and step by step". How I wish my neurotypical colleagues would read here: "When talking to someone with autism: use clear, simple speech and short sentences; ask specific, unambiguous questions"! If you want me to give you cold water, then do not say "Oh, today is such a hot day!" - just say "Give me cold water".
Sometimes I get long and confusing technical design documents, and it takes a long time to extract meaning from them - it's a pain! However, I see my neurotypical co-workers read and understand them easily. Many times, after I had great difficulty decrypting a document, I wanted to ask the author: "Why did you write a whole page instead of 3 lines which would convey absolutely the same idea without forcing me to look for meaning in the written and guess what you wanted to say with your foggy clues? Why did you constantly MEAN something instead of simply writing that in plain text?". The problem is that people often write in some kind of context that is spinning in their head at the time of writing (after all, they thought before writing). But for some reason they do not understand that I am not a telepathist - I cannot read that context. Another problem is that the authors are fully confident that I know all the smallest nuances of the area they are writing about, which is not always the case.
When I am creating business letters and documents, I am writing only what is needed, no "water", and only in plain text, without clues. Sheer pragmatism and no philosophizing. If it seems to me that the reader has a chance to misunderstand something, I give an explanation. This is not altruism but selfishness - I do not want the person to come back to me with questions, or, even worse, do something wrong, and then I would have to disentangle. People told me a few times that it's a pleasure to read my code, emails and documents since they are brief and to the point. In one video, an autistic woman said, "We say what we mean, and we mean what we say. It's a much more efficient way to communicate because you can save a lot of time and energy". It's so strange that this is considered a symptom of a deviation from the norm (one of the signs of autism), and not evidence of the absence of a "mess in the head" for any person.
In the already mentioned video, the lady talked about an experiment. Three groups of people were playing Chinese whispers, i.e. passing the thought to each other in turn, changing the wording, but trying to keep the meaning. In one group there were only autistic people, in the other - only neurotypicals, and the third group was mixed. In the mixed group, the meaning was distorted beyond recognition; in both heterogeneous groups, the meaning was conveyed accurately. One of the problems of autistic people (personally very disturbing to me in my work) lies in the mutual misunderstanding of people with different brain structures.
The following quote from the article about teaching autistic students applies also to business analysts and tech leads who prepare documentation for use by autistic programmers (or other professionals):
"It is suggested that the rules and routines be explained and stated using positive words (i.e. saying “Walk quietly in the hallway” instead of saying, “Do not run in the hallway”). Rules need to be concise and observable. In addition, they should be stated using literally accurate words to prevent confusion and posted in a visual format. Teach the rules directly. Direct instruction gives a rationale for the rule and provides knowledge about how to use the information."
• I am resistant to change and feel very comfortable and calm in a familiar, predictable situation: following a routine is a good way to avoid mistakes. I don't need to think about what's next because it's obvious. However, if something goes outside the box, then it's a very difficult challenge - I am very worried when the usual order of things is changing or in unexpected situations. Changes can be scary. Тhis is not only exhausting anxiety and expectation of bad things (similar to the general anxiety disorder), but also the need to decide how to act in the new situation, which is a big problem. It is difficult for me to make decisions, and when I have to, I am often not sure that they are correct. I read that this is a disorder called decidophobia. I think there are two reasons for this. Firstly, I am aware of my limited analytical capabilities, which is why the probability of a wrong decision is obviously high. Secondly, it is a fear of responsibility - after all, in case of failure, I will have to communicate with people. Nevertheless, I easily make technical decisions in programming, where I fully rely on my many years' experience.
I found in one video a phrase that characterizes me very well: "We are not suitable for jobs where we need to make quick decisions in non-standard situations, especially if these situations are related to communication with people, interacting with them directly".
From the same article about teaching autistic students:
"Generally, students with autism have rigid patterns of thinking. Their tendency to follow rules and routines often causes problems for adaptive functioning, including daily living skills, communication, and social interactions. Students may insist upon the same routine or environment and be upset or even have an emotional meltdown if the sameness is broken by unexpected changes or people. However, this characteristic of autism can be applied in a positive way. For example, it is widely known that many individuals with autism benefit from structured environments in which they understand the rules and routines. Students with autism are more likely to engage in activities in those situations."
• I have trouble moving from one activity to another - I get very upset. When I am doing something, I am very focused on the task at hand, so it's very hard and painful to be interrupted and switch to something else - I can focus only on one thing at a time. Multitasking, I hate you! If I am working on the current assignment and suddenly get a production ticket (which has the highest priority), it's a catastrophe which kills me a little bit. However, I quickly "cool down" and get to work.
• I always pay attention when other people are acting illogically. For example, when driving, or when replying to my emails. If I find an imperfect technical solution in code, written by other developers, I always pay attention to that. I often think: why did they write simple things in such incredibly hard and confusing ways?
• I can build very complicated system's modules from scratch if I have a clear technical task. I have a lot of experience in that, and I just love this job! However, trying to understand programs written by others is pain for me if the code is far from ideal. The worst thing that can happen to me at work is investigating someone else's code, full of bad programming practices, in search of the cause of the bug. It requires colossal abstract thinking that I don't have, which turns work into unbearable pain.
• I often find it difficult to process large amounts of information. Sometimes, at work, I feel that I am in the midst of an information explosion; I want to escape to nature and listen to the sound of the river. The flow of information in large quantities (especially if the key part isn't really highlighted) can lead to overload - the situation when I "burn out" and "turn off" for a while to rest and then return to work with renewed vigor.
• I process information by ear more slowly and more difficult than written information. If people ask me to do a few things, I always request instructions in writing, if possible.
• I hate phone calls. When my phone is ringing, I wish it's a spammer, so I can cut immediately! I am convinced that many neurotypical people just love to speak. They could write an email or an SMS, so I can answer meaningfully, with no rush - that would improve the quality of my answer (isn't that what they want?). However, they call, call, call! Why are they so sure that it's good timing for me? Maybe, I am busy right now!
• Dealing with other people (the outside world) is difficult, stressful and confusing, and I often have significant anxiety about having to do that. I am over-analyzing situations before and after trying to figure out what the best thing to say is (was). When socializing, I constantly make sure I am not going to say a wrong thing.
At school, when the teacher asked a question and I knew the answer, I didn't raise my hand just because I didn't want to draw attention to myself - in this way I protected myself from possible criticism (which, in fact, could be caused not by the erroneousness of my opinion, but by the desire of the criticizing to rise by belittling another). At business meetings, I often prefer to remain silent because I am not sure that my words will be treated with respect, although there is no reason for this worrying.
• I have absolutely no motivation to achieve success in society (in the sense that most people understand it). If I live in peace and no one bothers me, this is my quiet success.
• It is extremely difficult for me to work under pressure or deadlines. Do you want to make me panic and ruin everything? Tell me "it must be ready next Wednesday". I definitely place the emphasis on the quality of the work done, and not on the speed of its completion. When I know that I have plenty of time, I can write programs which are pieces of art (this is not bragging - there are well-defined criteria, which I detailed at the Elegant Programming Club). It is better to spend a little more time now than ten times more later, when it becomes necessary to make changes and enhancements, or investigate and resolve a bug.
• I have waves of high and low productivity. I can work for a long time like a horse, and then suddenly feel crushed - my batteries are empty.
• Sometimes I am stuck if I must perform a required action. When someone demands something, I take it as aggression, an invasion of my personal space. I want to respond to aggression with aggression. For example, when my wife is telling me to fill an online form or collect documents for something important. I understand, that it's not a big deal, and that I am looking stupid and stubborn for no reason, but everything in me is resisting that, I am standing still and not able to do what is required. That is the second reason why the production tickets are a catastrophe - they are A MUST! Sometimes I spend 10-15 minutes at my work walking around with no ability to do anything. Of course, everyone needs rest, but this is something different - even if I would be paid a million dollars, that would not force me to do things, which are, in fact, easy to do. After a while, I calm down and start doing the assignment since I have no choice. Fortunately, in two decades of my programming career, I've never once failed to get a task done in time, so the problem interferes with me, but not with my work.
This issue exists not only when others tell me to do something, but also when I myself realize that I must do something. In other words, when circumstances force me to take some action.
From FB:
"Executive functioning: We struggle to start important tasks, plan and organize important activities... we even struggle to get started on things we love to do. Outwardly, we appear lazy and unmotivated, but inside we are fighting with our brains to just... do things."
I recently learned that this is an autistic trait called PDA (Pathological Demand Avoidance). In this video I came across the following definition of PDA: "Not being able to do certain things at certain times. Resisting and avoiding the ordinary demands of life".
The main characteristic of PDA is that when demands are placed on a person, he or she has a high level of anxiety. People with PDA may seem to be highly stressful even with simple daily expectations, and they resist and avoid life's usual demands to an astonishing degree, using, for example, the following social strategies: distracting the person making the demand; seeking excuses and justifications; procrastinating and negotiating; physically "putting themselves out of action" (self-incapacitation). The basis of such evasion is anxiety about compliance with social requirements and lack of control over the situation. In doing so, it may mistakenly appear to others that the autistic person is engaging in manipulation to relieve him/herself of the work, or does not want to do what needs to be done, out of spite. But in fact the person is simply in a state of anxiety or even panic at that moment.
From the article What is PDA? (Russian):
"The main difficulty for people with pathological demand avoidance is the anxiety-driven need to control and avoid the demands and expectations of others. Moreover, the results of a 2016 study at the University of Newcastle, UK, suggest that this extreme anxiety in people with PDA is exacerbated by an intolerance of uncertainty. At the same time, it is autism that is the reason for the development of an extreme degree of demand avoidance and the need for control. It is important to note that “demand avoidance” is considered a possible sign and symptom of autism according to the UK National Institute of Care and Quality guidelines. PDA is a lifelong disability, as with other autism profiles. People with PDA need different levels of support at different stages of life, depending on the extent to which the condition affects them.
People with PDA appear to be more competent in social communication and interaction skills than other people on the autism spectrum. However, their understanding of social interaction and communication is usually very superficial, lacking in-depth understanding. These people can copy and reproduce the social interaction of the people around them in order to better "fit" into the social situation. They may also have well-developed oral speech, but in some people with PDA, it hides very serious difficulties in understanding and perceiving someone else's speech."
Of course, something similar can be observed in any person, but it's all about the level of extreme: in Pathological Demand Avoidance, the key word is "Pathological". It has nothing to do with laziness. PDA is a standalone medical profile on the autism spectrum that is usually observed in combination with others. This knowledge is of great importance to me! Now if I feel like I can't bring myself to work and I am taking a forced break, then I DON'T FEEL GUILT ANYMORE: this is my physiology, and I cannot do anything about it. I realized before that I would over-compensate for this break in work (later, when I would have inspiration, I would work "for three"), but now I am absolutely calm in such moments of sensory overload (which in itself contributes to better rest). However, fortunately for me, my PDA is not very strong, and does not appear often.
• If I like something or it's interesting to me, then the picture is the opposite - I do that with pleasure, and can spend a long time collecting information or working with passion. Before buying an electronic device, I do a serious research on the Internet. I created a site dedicated to my health problems which contains all the information, collected by me, and describes how I solved the issues - some readers even asked if I am a healthcare professional, ha-ha! At school, I had good grades in subjects in which I showed interest and poor grades in subjects that I did not like. The teachers told my parents: "Your son is smart and gifted, but very lazy!". Alas, the teachers did not understand that it was not laziness, but a physical impossibility to force myself to do what was needed, or other problems related to the biological characteristics, not dependent on my desires (like limited abstract thinking). I really love my job when I create new software modules according to clearly formulated documentation. It happened so many times that I could hardly wait until the weekend was over to finally return to my favorite pastime, for which they also pay money!
A strong fascination with a subject, which is accompanied by a thorough gathering of information, is called a "special interest" and is one of the diagnostic criteria for autism.
• I hate "small talk", especially when people ask me "How are you?" and are waiting for an answer. I know that the interlocutor does not care how I am doing! Of course, I give a standard answer the neurotypical society is expecting, but everything is exploding inside me - why do I have to give a stupid answer to a stupid question? If the person wants to ask me something, why doesn't he ask immediately, without speaking about nothing before that? Sometimes I answer with a joke - just to hide the stupidity of the situation. "How are you?" is an absolutely normal question if, for example, somebody knows that I was sick and asks if I am better now. There is some context meant by the person - my sickness. But I was not sick! What do they mean? "How" should I be according to their expectations? Also, I hate when people wish me happy birthday. These words are useless and meaningless to the same extent as "How are you?". I wish people all the best always, on all days, not just on their birthday. That's also the reason why I hate to wish happy birthday to others.
The translation of my FB post in Russian:
"Hi!
How's it going, how's life? What's new? How are the kids? The weather is beautiful today, isn't it? What are you doing? Sitting and reading Facebook?
A video on why autistic people hate small talk. In a nutshell, because it is false, artificial, almost a lie, and it forces us to pretend to be interested and to give standard, preknown answers to general (and therefore meaningless) questions, which is completely illogical (and many autistic people are sick of the illogicality of the neurotypical world). I've always felt this, and I've always found it strange that someone feels drawn to this nonsense rather than disgusted by it.
And it has always been difficult for me to maintain such conversations. On "How are you?" answering "Good" is simply unbearable, so I had to come up with funny answers for the employee who every morning (until we were sent to work from home) pounced on me with standard questions - just to avoid participating in the retarded shaking of the air. But it was not always possible to come up with something funny, so I often had to maintain small talk in a standard way. Why not just say "hello"?
So if you see that the person you are talking to does not support the conversation (or is not responding to you because what you said it is a statement, not a question), it does not mean that your interlocutor is ill-mannered, rude, has something against you, is offended, or is trying to make you angry. He/she may just be on the autism spectrum. Most likely, though, he/she will do everything possible to make sure you don't notice "anything wrong", and give a standard response. This is part of the autistic "disguise" that wears autistic people down on a daily basis and leads to burnout (the video is called "Small talk is a death sentence" for a reason). But that's another topic."
• I am very good at recognizing good and bad people. Many put on a mask of kind, smile, say something pleasant, sometimes they do it all very "efficiently" if they are smart, but I know for sure that they are evil - there is a supersensitive sensor inside me that cannot be fooled. Just by looking at a person's face, I instantly read this information, which is then confirmed by the tone of the conversation when the person starts to speak. From comments on social networks, I sometimes notice toxic people, and I'm sure that most readers would find these comments completely harmless. I silently banned some friends on FB - it is unpleasant for me to communicate with acrimonious people, I do not want to be a donor of psychological energy. I am sure that they were surprised and found me strange - without understanding what was the matter.
• I know that many autistic people cannot stand loud noises and bright lights. I cannot say that I absolutely cannot stand them (I never experience sensory overload), but I definitely have heightened sensitivity. When we were choosing a house, my wife really wanted the rooms to be bright, but I preferred darker. On bright sunny days it is difficult for me without sunglasses. Active noise canceling headphones are my best friends. I wore them in the office to make it easier to focus on work (before I started working from home because of covid). They also saved me the rare times I took the subway.
However, many of the typical signs of autism are mild or not observed at all. I can look people in the eyes (although I definitely feel better if I don't) and can remember faces normally. I do not speak in a monotonous voice (well, maybe just a little). During a conversation my face expresses emotions, although definitely less noticeable than in neurotypicals; however, this is often the result of "masking" - I noticed that sometimes I consciously control my facial muscles so that the interlocutor "does not suspect anything". I smile and laugh, I make others laugh, I understand jokes, sarcasm and social cues. I perfectly "read" intonation and emotions, and understand body language. I do not ignore the feelings of other people, I am always polite to them and do not directly say everything I think - I don't want to hurt them (and make them hate me for saying the truth). I have no problem with food texture, smells and touch.
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Autism (Part 1) • Autism (Part 2) • Autism and job • ADHD • Monotropism • Questions to AI