Did you notice anything unusual in the behavior of yourself or loved ones? Read on!
I was always feeling that I was different from those around me. All my life I've had the feeling that everyone was playing some kind of game, and they forgot to tell me the rules.
On the one hand, for me some things were difficult that were easy for others. For example, openness and ease in communication, some subjects at school, and some elements of my work. On the other hand, I was feeling that my actions were somehow more logical and orderly compared to some of those around me, and the results of my work were more "in the spirit of perfectionism" (I especially often noticed this in my programming job, reading code written by other developers).
I always suspected that something was wrong with me, that I was different from other people, but I did not know what exactly was the matter. Recently, however, "the puzzle has taken shape", and the situation had become clear. At the age of 48, I suddenly found out that I was not the only one who was "sent to this planet from deep space", but there are millions of us (people with genetically different nervous system and brain structure). I saw the numbers of the assessed people from 1% to 4% of the population, but judging by people I see around (although I may be wrong), the real number is clearly higher - many are not only undiagnosed, but do not even suspect that they have something that has a name (as I did until recently). People can live a whole life, not suspecting that they simply belong to another category of people, and they are not defective specimens of the only category existing in nature. They don't even know that different categories exist at all (did you know a minute ago?).
• AQ test
• The situation has cleared up. I saw my life in a completely different way
• "But you don't look autistic!"
• Let's be classified?
• Let's be... not classified!
• And more about self-diagnosis
• Pathology or just diversity?
• It is not easy... Introduction to ableism
• Reading facial language
• Masking (aka "social mimicry")
• A related topic is introverts
• Professional assessment
• My characteristics in detail
It was by pure luck that I passed an online AQ test (AQ stands for Autism Quotient, not to be confused with IQ - Intelligence Quotient!) - be sure to spend a few minutes and take it
Autism is a neurotype (developmental distinction), considered a hidden disability. It affects how people experience the world and interact with others. Autistic people see, hear and feel the world around them differently to other people.
You can't get autism, you can only be born autistic. It's for life: autism is not an illness and cannot be 'cured'. People feel being autistic is a fundamental aspect of their identity. Autism is genetic in nature and is caused by specific features in the structure and functioning of the brain, which affect information processing and world perception.
The scale of the test is 0 to 50 and consists of a few segments. The following information is taken from the video Everything You Need To Know About The Online AQ Test:
• 0 to 10 - absolutely no autistic tendencies.
• 11 to 21 - the average for most of the population.
• 22 to 25 - a higher than average number of autistic traits.
• 26 to 31 - a borderline score. 86% of people with this score will be correctly classified as having autism.
• 32 to 50 - very high likelihood of being autistic. 80% of the adults with high functioning autism and only 2% of the non-autistic control group scored 32 or higher. 43% of autistics scored above 38. However, none of the 174 not-autistic participants scored above 38.
So, a high score rather reliably indicates that you are on the spectrum, but a low score does not guarantee that there is no autism, i.e. this is NOT an autism absence test.
I got 37. Of course, the test is very approximate, although it will most likely coincide with the professional assessment if it is made. Please watch the video Self-Diagnosis Of Autism: Is it valid? It can be summarized in one word: valid!
A friend of mine, whose autism is clearly stronger than mine and he has an official diagnosis, was scored lower than me. He explained it this way: "I got 34 but I think it's because that test seems more focused on social stuff than sensory stuff".
Of course, this test is only the first step in the self-discovering. If your score is above average, then the second step is finding information on the Internet and comparing it to yourself. Autists are known for collecting information about the subject of their interest a lot and with enthusiasm, "digging" the question in depth (that is named "special interest"). In this case, that interest is autism itself, ha ha! As you continue to study information about autism, sooner or later you can find that the AQ test was wrong in relation to you (this did not happen for me). It is possible that in the future you will decide to take the third step - official assessment.
The situation has cleared up. I saw my life in a completely different way
As far as I understand from the test and from many articles and videos, I undoubtedly have autism (more precisely, the variety that until recently was defined as Asperger syndrome). Well, certainty, even if it is not the best, is still better than uncertainty... Many previously incomprehensible problems have found an explanation. Some peculiarities of perception and thinking, which have always seemed to me shameful flaws, for which I was responsible, turned out to be completely natural for a certain kind of people. Trying to change or overcome them is not only stupid, but also useless - they are beyond the control of our desires and willpower, it's just how we are built.
The discovery that I am autistic was a turning point which unlocked a totally different version of me, and allowed to reframe my self-identity. This new knowledge gave the feeling as if the court would acquitted me, dropping the unfair charge after several decades of litigation. Claims to myself have ceased - I will no longer "break" myself. I want 40 years of my life back!
The experience of the guy from this video is very similar to mine:
"Asperger's put a name to something that I felt like I'd been struggling with my entire life. From as early as I can remember, I've had this feeling that I was different and that difference was bad, so you can imagine that finally putting a name to that and embracing that difference was incredibly liberating."
The girl from this Russian video is just reading my mind:
"I reacted to the diagnosis with great relief. When all your life you don't understand what the hell is going on with you, why you are different from others, and then they say to you: "That's why!" - it is such a relief, it changes everything so much, it gives you answers to so many questions! It really became a very big push towards a better life. I began to understand what to do, how to arrange my life, how to build interactions with people."
From here (in Russian):
"I am 37 years old, and now I have received the answer to the question that has puzzled me all my life - why I have such a hard time doing things that other people take for granted. This diagnosis put an end to a lingering personality crisis. For the first time, I realized what explains my special talent for being so smart and so stupid at the same time."
I completely share what the other person expressed in another Russian video:
"My first reaction was that I understand that some issues cannot be resolved, i.e. I can never become like everyone else. All my life I suffered from the fact that I could not become like everyone else, and because of this I tried to become better than others. This caused problems. And then I finally found out that I couldn't do it, because I am not like everyone else essentially. I quickly realized that since this cannot be achieved, then - ok, I don't have to worry about this anymore, I can proceed from what already exists. I am not like everyone else, so I will be what I am now. And I suddenly stopped worrying about it. So, in fact, it was such a good discovery, as I soon realized."
From a Russian forum:
"Why does knowing my diagnosis make it easier? Now I don't get so upset if something doesn't work out like everyone else. And I do not push myself to the point of being depressed. If a person really wants something, he will make increased efforts and look for non-standard ways and solutions. But in case of defeat, he will know that "I have done everything, but I cannot go against nature". If a person is short and was not taken to the basketball team, he will understand why. Before, I took offense at myself, felt a strong sense of guilt, but now I have found myself an excuse "I just am what I am." It became easier to perceive everything, many of my actions became more understandable. I had to spend quite a lot of time to: a) understand that if I cannot do something, it does not mean that I am worse than those who can; b) get rid of the feelings of guilt and inferiority firmly imposed on me because of this and learn to defend precisely my right to not be able to do something - so that they take this into account and do not demand this from me (in return, I can usually offer something that I can )."
A comment in the discussion of this page on FB (in Russian):
"My son is 10 years old. He read your story and cried. He said that he recognized himself and that it was good that he had read. Now he knows that he is not the only one like this, and it became easier for him. And there is no need to die or be afraid to live."
The thoughts and the feelings of the lady from this video are very close to mine too:
"...when I was 25 years old, I was diagnosed with autism, and it wasn't a tragedy. It was the best thing that's ever happened to me. Finding out that I'm autistic brought me an overwhelming sense of relief. My whole life, up to that point, finally made sense. My paradigm about myself shifted. I wasn't a failed neurotypical person [with a typical brain structure - as opposed to autistic people]. I was a perfectly good autistic person."
From Telegram (Russian):
"...the diagnosis helped me validate many of my oddities and allow them to coexist with me. For example, I no longer suspect myself of stupidity and do not get upset when I remember that I like to process the relationship in writing, because verbally I have too little time to think how to say."
From the book Asperger Syndrome, the Universe and Everything (oh, I wish I'd known all that 40 years earlier!):
"I cannot believe that this went undiscovered for my entire life... I have been severely misunderstood by everyone, and even myself. Alright, so I am autistic that’s for sure. That is my core. And all the maladaptive defense mechanisms are part of my disordered personality. What a complex person I am. No chance of becoming normal, so I might as well give up on that idea.
I find that exploring my autism and the way it presents itself in me, has helped me to puzzle together a lot of the pieces that did not make sense to me and others in my existence. It helped me to realize that there are a lot of abnormalities (according to the norm) that are supposed to remain that way. That is who I am supposed to be."
From the video Autistic People Aren't Broken NeuroTypicals:
"I was often setting myself to impossible neuro-typical standards, unfairly to myself for many years, when I didn't have the information that I was autistic. I didn't know I was a "square peg", trying to squeeze myself into a round hole, and I was damaging myself."
The Israeli army recruits autistic people to the military intelligence service. And it was the autists who discovered the law of gravity, created the theory of evolution and the theory of relativity, wrote the US Declaration of Independence and "Alice in Wonderland", composed "Turkish March" and "Bohemian Rhapsody", deciphered the 'Enigma' secret code used by German submarines during the WWII, established Microsoft, Apple, Facebook and Tesla. I am writing all this not to the fact that autism is cool (it's not cool at all, and it's not true that most autists are smart or gifted - autism comes with a lot of problems and I wish I didn't have it), but to the fact that if you find it in yourself or your child or spouse, do not rush to fall into horror, life is not ended - everything is not so bad, although it is undoubtedly fraught with problems. You knew about them before, but now you also know what phenomenon lies behind them and are armed with additional information.
"But you don't look autistic!"
"Autism spectrum" is a very general and vague name for a range of social communication phenomena ("autism traits") that can occur in different people in different combinations and to varying extents. Autistic people are all different - in the same way as neurotypicals ("NT") are not similar to each other. The stereotype that all autists are either very severely disabled and unable to communicate, or formidable computer geeks is nothing more than a meaningless stereotype.
Within the spectrum, there can be people with signs that are immediately apparent, as well as people you would never think of as having autism.
There were many cases when autistic people "came out" and heard in response: "No, you do not have any autism, you do not look like an autist at all!" (as if there were some kind of clear portrait that all autistic people should fit into). Never say these words - they sound like "This is a figment of your imagination, don't slander yourself!" Can you imagine what it's like for people, who ARE autistic, to hear such a thing after so many years of struggling? You are forgiven for not knowing what you are talking about since you haven't spent a day being autistic, but they've spent their entire life. Perhaps you do not see anything suspicious because the cruel life has taught your interlocutor to camouflage his/her peculiarities.
From 5 Sensible Guidelines For Interacting With Disabled People (The Forbes):
"Don't try to minimize someone's disability.
One of the most common ways non-disabled people try to be kind to disabled people is to tell us in some way that our disabilities aren't noticeable or important.
Most disabled people want to be noticed and known for more than just their disabilities. But most of us don't want our disabilities ignored, overlooked, or minimized either.
Comments like, “I don't think of you as disabled,” “It's great how you don't let your disability hold you back,” and “You have overcome your disability so beautifully,” simply don't ring true for those of us who live with our disabilities every day. It doesn't matter how sincerely you mean the compliment –– these types of comments simply aren't what most of us need or want to hear."
Also, never say nonsense like "Oh, everyone is on the spectrum these days!", "Who doesn't have autism at least a little?", "It's fashionable now!" or "Autism is a convenient excuse for the lazy" - by this you will only demonstrate your incompetence in the matter. These phrases diminish the daily struggles that a lot of autistic people face. Yes, non-autists might have certain traits, typical for autism (for example, anxiety or difficulty interacting in a social situation), but everybody isn't a little bit autistic, just like everybody isn't a little bit pregnant (even though everybody might have some of the symptoms of pregnancy like nausea and sore back). You either are autistic or you're not. Another analogy: 10 kg overweight and morbid obesity with 200 kg on the scale. Both are overweight, but only one case is a disability. 10 extra kg don't mean "morbid obesity a little bit". The presence of autism features at a level of severity above average (broader autism phenotype, or BAP) is not yet sufficient for a diagnosis to be made. Most often, there are minor impairments in social and communication skills. BAP occurs with an increased frequency in family members of autists, which is associated with the genetic nature of autism. Please watch the short video But we're all on the spectrum somewhere!.
Let's be classified?
Autism is traditionally (which does not mean "correctly" at all) divided into low-functioning (LFA) and high-functioning (HFA). Functioning refers to the physical ability to function in society and life in general (including self care skills) with less or more need for support. It is not at all about the quality of brain functioning or the level of suffering (as some people mistakenly perceive this terminology).
• Low-functioning ("deep", "severe", "classic") autists "live in their own world", have enormous difficulties in communicating with the outside world and arranging life, and usually do not speak or speak with difficulty and very poorly (although, sometimes, they write books and make millions on Wall Street). The fact that such people look aloof and poorly responsive to external signals does not mean that they do not understand what is happening or intellectually less developed than you. They need substantial or very substantial support of other people.
• High-functioning ("mild") autists "live in a common world, but in a special way", they are better adapted to life in society. Although their life is fraught with difficulties, they need less support (this is what the official classification says, but it is not always true). From the article Asperger Syndrome: 50 important facts about having "mild" autism: "If you have it "mildly", you're at the awkward midpoint of being "normal enough" for everyone to expect the same from you as everyone else, but "autistic enough" to not always reach those expectations".
Asperger's syndrome has always been considered a type of autism at the highest-functioning end of the autism continuum.
"People with Asperger's Syndrome tend to develop speech in the same way as typically developing children, but they have significant social difficulties. These difficulties become more evident as they mature and social expectations rise. Because people with Asperger Syndrome are often quite intelligent but also “quirky,” the disorder is sometimes referred to as “Geek Syndrome” or “Little Professor Syndrome.”" (the source)
From the video Aspergers In Society - The Hidden Mental Health Crisis (Autism Documentary):
"Those with Asperger's Syndrome are generally indistinguishable from an average person. They often go without the social support that others on the autistic spectrum receive. They are given special education to help them fit better into society but they stand as some of the most vulnerable individuals at all stages of life. At school they are bullied, socially isolated. In adulthood 70% of autistics receive a significant lack of support from social services and at least one in three live with severe mental health difficulties."
According to the recently adopted North American diagnostic criteria, the diagnosis of Asperger's Syndrome has been phased out (nevertheless, the term remains official in many countries and, in any case, continues to be widely used in articles and blogs), and autism is now divided not into two, but into three levels of increasing severity:
Please pay attention that high-functioning / level 1 autists still need support.
Let's be... not classified!
In the autistic community itself, the opinion is rather different. Many people deny the idea of classification at all. They say: every autistic person is equally autistic. People do struggle in different ways but that doesn't make them less or more autistic than another autistic person. Indeed, there are at least four serious reasons to question the legitimacy of the existing classification.
• Dividing autism into low-functioning and high-functioning/Asperger is meaningless since the truth is much more complex. The spectrum is not one-dimensional (higher/lower autism), but multidimensional (higher/lower scale separately for each of the many parameters which also can manifest themselves in different ways). It can also be the case that if you compare two people, they have no coinciding traits at all. They may be the exact opposite of each other, but they are both autistic.
Many autistic people have what is called a "spiky profile", which means the same person can have both pronounced abilities and disabilities - whether or not they require full-time support. That is, a person can be high-functioning according to some criteria, and low-functioning according to other traits. Moreover, the strength of various manifestations can change over time - even over the course of a single day. A person can seem "high-functioning" and really have trouble with basic everyday tasks just like a person who seems "low-functioning" can really excel at things that are used in everyday life.
• The existing diagnostic criteria are unreliable. They do not "look inward," but are based on external manifestations. Autism is first and foremost a way of thinking and seeing the world, while the signs are collateral, and not necessarily present in everyone. The specialist observes neurodiversity from the outside, has no way of knowing exactly what is happening in another person's head, and often misunderstands this. What the diagnostician sees often doesn't reflect what and how the person feels and thinks, and doesn't tell the whole story. Many people are so accustomed to masking their autistic traits that they automatically continue to do so even at a specialist appointment. From the video Autistic Communication - The VERBAL Spectrum: "The trouble with current diagnosis guidelines is that they're not based on the way a mind works but on opinions of how we express ourselves externally. If the diagnostician cannot understand the way we communicate, or they think we express ourselves too well, it will impact their assessment. This wouldn't be a problem if those assessments didn't shape peoples' futures, determining what opportunities and services will be available to us and the way others will interact with us, possibly for the rest of our lives."
• The diagnostic methods are subjective. There have been cases where one specialist has classified an autist as LFA and another as HFA.
• Functional labels of any kind are used against us. They disadvantage us, as they are assigned based on how our autism impacts on those around us as opposed to what being autistic means for us. The labels are mostly about categorising and packaging us up for easier processing by a broadly neurotypical society, but they don't help us at all. The labels don't mean anything, they just describe less or more recognizable autistic traits. And it may even lead one to believe that "more apparent" somehow means the same as "more severe" or "more suffering". Just because someone appears to be coping/masking doesn't identify the struggles and feelings they have on the inside. What may be hiding behind the traditional labels are just "high masking" and "low masking." "High functioning" is essentially code for "masks well enough to mostly pass as neurotypical". When autistic people are labeled "high functioning", their needs and the fact that they have a disability is erased. Some autistics need support they don't qualify for due to being officially declared "high functioning". And, oppositely, a "low functioning" person will often be automatically considered too retarded to treat with appropriate respect and autonomy, particularly if the person doesn't speak.
That's what I found in one of the autistic FB groups:
"Words matter. There is no such thing as less autistic or more autistic. People are simply autistic. Labels often applied to autistic people can be misleading and do more harm than good. Instead of asking "Where are you on the spectrum?", аsk "What are your sensory challenges?".
• "High Functioning" is often used to deny support. This often means "good at faking being neurotypical or pretending to be non-autistic." Why should autistics be encouraged to aspire to wear a mask and perform all the time? It is used to dismiss autistic people when they face challenges, difficulties, and ask for help. People might say "You are high functioning! You don't need that!"
• "Low Functioning" is often used to deny agency. Agency is the capacity of individuals to act independently and to make their own free choices. This might include control even over an autistics own body because "they can't manage that". An autistics talents, abilities, and skills are overlooked or written off."
Try not to use any functioning labels. Just say 'autist', 'autistic', 'autism'. Most of the time it's enough.
Yes, most of the time, but not always.
Talking about problems with functioning labels, we are not denying intensive disabilities. We don't claim severe autism doesn't exist (please read this).
However, saying "low functioning" leads to dismissing a person's abilities, whereas saying "high functioning" dismisses their disabilities (even if they are not that severe), which is why many members of the autism community use the terms "high support" and "low support" instead. If you need to describe a particular person, list specifically their autistic strengths and areas where they have a disability and need support. This is a much more practical approach than using ambiguous labels.
For additional info, read Spectrum doesn't mean what you think and watch these videos:
• High or low functioning autism? Why functioning labels hurt us.
• Why I DON'T say "Asperger's"
• High Functioning Autism (It's NOT what you think!!) ("High-functioning literally means invisible struggle. What it does not mean is reduced level of difficulty, reduced level of challenges. I'm high-functioning because despite all of these challenges that are invisible and you can't see in the background, I am successfully living my life and getting all the things done that I need to to, you know, maintain relationships, keep a job, all of those things. So, from the outside, it looks like I'm doing really well, where actually I'm at the very brink of completely falling apart, all the time.")
And more about self-diagnosis
Above (in the paragraph that begins, "Existing diagnostic criteria are unreliable"), we saw that official diagnostics are flawed, to say the least. This means that the role of self-diagnosis, which is sometimes skeptically discussed, is far more important than it might at first seem.
From the video You should know this about autism (in Russian):
"Self-diagnosis is OK. Again, going back to the fact that autism is not an illness. Accordingly, you don't need a doctor's confirmation to know that you are autistic. That's as silly as needing a doctor's confirmation to know you're gay or lesbian. Or you need a doctor's confirmation to know if you're an extrovert or an introvert. That's silly. It's just a characteristic of your personality, and it's up to you to decide whether it applies to you or not. And it's unshakable if you've studied the topic. The main thing is to study it deeply - you don't have to decide at first impression, of course, but if you're autistic, you will study it deeply. And if you don't want to study it deeply, if you're just like, "ahh, well, I could be autistic" - and go, it's probably not about you. If you decided so, that's OK. Even if you made a mistake in this (if you first decided you were autistic and then realized you were wrong), there's nothing terrible in this - it won't hurt anyone that you were wrong. It's OK to examine yourself, and don't be afraid of your mistakes, it happens to everyone. Just know that no one knows you better than you, and only you can decide what kind of person you are, what group of people you belong to, how you feel, and what kind of thinking you have. Only you can understand this. And if you conducted a self-diagnosis, carefully studied the topic and realized that this is about you, then it is so, and no one can reproach you for this, and no one can say otherwise. "
The page you are reading right now is a great starting point for a serious dive into this issue. This page contains so many quotes that I found online over the course of several months after taking an online autism test, and decided to concentrate in one place to make it easier for those who, like me, happen to find out about their autism.
"self-diagnosis is NOT seeing something on the internet and diagnosing yourself because you can relate.
self-diagnosis IS knowing you're different and spending countless months and years researching, learning and doubting and exploring both internal and external experiences before even making a decision.
self-diagnosis is NOT reading a Wikipedia page once and deciding you're autistic after relating to a single trait.
self-diagnosis IS connecting with the community and other autistic people, reading and reading about the internal autistic experience rather than just the criteria and connecting the dots from all those years living as an autistic person.
so in that case...
if you are against an autistic person self-diagnosing themselves with autism then it means you believe autistic people need permission from neurotypical people to talk about their own damn lived experience and identity.
you know, the lived experience that they are living every single day? you know, the identity that is THEIR neurology and who they are?
if you only listen when a professional has confirmed it...
that's called ableism."
"let's quit with the shaming of individuals learning about ADHD or autism from TikTok or IG and self-identifying or self-diagnosing, okay?
it doesn't mean it's a phase or a fad or trendy nor does it mean it's actually inaccurate or something everyone does either.
individuals who learn about autism and ADHD from social media are probably getting a more accurate and informed understanding than most professionals...
yes, I said it.
current criteria and education often fails to capture the internal and lived experience of autism and ADHD while instead catering towards NTs by focusing on external or behavioural aspects.
this is because a lot of the dominant research and education on our neurodivergences:
a) is based on the presentation of traits in white, male children.
b) focuses on observable traits rather than the internal experience.
b) remains led by non-autistic and non-ADHD researchers.
learning from other autistic individuals and ADHD-ers through social media should be respected.
neurodivergent individuals should be considered the experts and voices for our own experiences."
In any case, the role of self-diagnosis remains very important, if only because it is not easy to find a specialist who diagnoses "autism" in adults. For a long time, autism was thought to be a "childhood disease" (as you can see, both words in this phrase are wrong). Science categorically refused to answer the question "Where do disappear autistic children when they grow up?"
From Advice for Anyone Looking to Get an Autism Diagnosis:
"In the Austin, Texas area (a central metro area), when I called the local Autism Society five years ago, there were only four doctors who worked with ADULTS and would make an adult diagnosis – ONLY 4 in a MAJOR metro area. If you are in a rural area, there may be nobody around for miles. Wait times will vary greatly depending on if you live in a country with public health care or not. In America, private healthcare means costs are high, but waits are short. In the UK, services are available, but waitlists can be YEARS long."
On my own behalf, I will add that in Canada there are both options - for free, but waiting for a long time (which I have been doing since February 2021), or quickly, but for money.
Pathology or just diversity?
Those who are completely out of the loop often confuse the concepts of autism and mental illness (such as mental retardation/intellectual disability or schizophrenia), but they are not the same. Autistic people may or may not have mental illness in the same way as non-autistic people. I.e. they are simply different, unrelated dimensions - like weight and height. Nonetheless, the percentage of autistic people with mental retardation is higher than among neurotypical ones. There are many causes of mental retardation, and the impairment of developmental mechanisms in autism is one of them. However, in the case of HFA / Level 1, the proportion of mental retardation should be 0% by definition, because this is recorded in the diagnostic criteria. Watch this video: I'm NOT CRAZY! (I'm Autistic).
The name "Asperger's syndrome" was dropped because both the words in it are problematic. Firstly, the Austrian pediatrician Hans Asperger was a Nazi. Secondly, the term "syndrome" implies a disease that has a beginning, course and a definite ending, and must (or at least can) be cured. However, autistic people are not sick - they just have different perceptions, thinking, information processing, priorities and values. Different doesn't have to mean bad or abnormal. It's just different. Autism is not like a runny nose or a broken leg - it's an innate condition that accompanies people all their life and is their way of life, nature. You can't take an autist, give them a cure and make them non-autistic. In this case, we are talking about a less common expression of the human genome: an alternative (but not pathological) variation in the structure and function of the brain and nervous system, which simply exists in a certain percentage of people, i.e. is not the norm just numerically. Common and very accurate analogies for autism that I've come across are redheads, left-handers, homosexuals and whites: quantitatively - not the norm, but qualitatively - not something bad.
Obviously, the established lexical bundle "Autism Spectrum Disorder [or Disfunction]" and the corresponding acronym "ASD" are incorrect since it's not at all about a disorder or disfunction. By the way, for the same reason, the word "diagnosis" is inappropriate too; the word "assessment" reflects the essence much better.
Nevertheless, the term "diagnosis" is in wide use even among autistic people - perhaps because it sounds more convincing and "irrevocable" than the vague "assessment". Of course, no one should forget that what is actually meant is not a diagnosis of pathology, but a determination that a person is autistic (made by him or herself or by a specialist).
Somebody could ask: "If it's 'only' an identity, why should autistics get any accommodations or help?" Because the world, adapted for people with another identity, has forcibly made us need support. If there were as many autistic people as there are neurotypicals, the world would be a completely different, and autistic people wouldn't need any special help.
There is an illusion that there are more and more autistic people, but that is only because autism diagnoses have become more common in recent decades (starting in the 1940s and especially since the 1980s).
From Is Autism An "Epidemic" Or Are We Just Noticing More People Who Have It?:
"The disorder [I would rather use the word "feature"] hasn't actually become much more common — we've just developed better and more accurate ways of looking for it. Another strong argument against the specter of an emergent autism epidemic is that prevalence of the disorder is notably similar from country to country and between generations. Because of greater awareness of autism and the flexibility of the diagnostic tools used, we've recently been diagnosing people with autism who previously would have received other diagnoses or gone unidentified."
As you see, autism is not a recent phenomenon. Both the variations have existed in parallel for centuries and millennia. Despite this, it is not neurotypicality that is considered a disorder worthy of curing, but autism, simply because it is more convenient for the majority. What is this if not the idea of neurotypical supremacism?
It is not easy... Introduction to ableism
I wrote above: quantitatively - not the norm, but qualitatively - not something bad. And yet, there is "something bad" in autism - it causes problems from childhood. Mainly because the world was created by neurotypicals for neurotypicals and is tailored to the majority which often refers to autistic people as strange, unsociable (although from the point of view of an autistic person that world itself can look strange, and sometimes unnecessarily intrusive). Even if the autistic people are not offended, many of them still feel that they are treated differently.
The neurotypical world acts on the principle "if I can do it, then you can too", although it is not so from the physiology's prospective. When an autistic person is treated like everyone else (sounds great, doesn't it? isn't that what all fighters for justice and equality strive for?), that can be a serious problem too. Autists have requirements that are not applicable to them in principle. I'm talking about study and work, where everything is designed for neurotypicals - it would be nice if the attitude of others took into account the specifics of autism, but who has heard of it? Even autistic people themselves often have no idea who they are, what can you expect from others? So it turns out that many teachers and bosses bully disabled people - not because these teachers and bosses are evil, but because they have not the slightest idea about what they are doing.
"I am absolutely exhausted from this. I am a teacher and there is a very specific way teachers are 'supposed' to act. It's absolutely soul crushing. Not to mention having to combat all the ableism that goes on when teachers are talking about what kids 'can't' do and what they're going to 'have to learn'. Autism is not a shell for allistic [non-autistic] people to crack open or a disorder to fix. It's a disability, yes. And some people need support to complete activities of daily living. Many aspects of autism are disabling because of intense ableism. Society abuses and traumatizes autistics every day by forcing us to deny ourselves."
Judging by the laudatory annual performance reviews from my managers (as well as the fact that I have never been fired for poor performance in my two-decades career), I do just fine with my professional duties, but sometimes at the cost of invisible super-efforts, struggling and even suffering. This happens a lot when I do work that does not directly belong to my profession of a software developer - for example, investigate bugs of other programmers (especially if those guys weren't very good at the art of programming) or receive vague instructions directly from business users or analysts (instead of developing according to a clearly formulated detailed design specification). Often times, I go to work as if I'm going to war, and wage a real fight to meet performance expectations - my job drains me. At the end of the working day, I am often completely exhausted. Therefore, it is difficult for me to be on the side of those who argue that autism is not a disability. However, it must be said that it's not always difficult for me at work: if I have a well-articulated technical task (even if it is very complicated), I adore my job and time flies by!
From How I Came Out About My Disability:
"High functioning autism isn't an empty label just because it includes the words “high functioning.” It means I might have the ability to function under “neurotypical” demands — but only for a while. It means that not only do I need to rest frequently, but I also limit how I engage with people and I am mindful of where I am to reduce stress and overstimulation."
From Help autists who live near you! (in Russian):
"If you meet people who seem strange to you and not like most of your friends, remember that when communicating with you, they experience a much greater "culture shock" than people experience when looking at them, because they live in a world where their way of thinking and their natural way of behavior is not the norm, they live among people who in their mind are similar to aliens, whose behavior seems strange to them. It is quite possible that in the past they had to endure the bullying of these people. Before judging another person for strange behavior, imagine how you would feel if you had to pretend and behave in an unusual way all your life."
Imagine a society where all the people were deaf. It would probably be a very noisy world. Houses without noise insulation, cars without mufflers, fridge and other home appliances rumble like tractors, neighbors make repairs until midnight, people around are constantly making various sounds. And if some people suddenly, in a strange way, developed the ability to hear (due to a genetic mutation), then they would become disabled, because their experience would be incomprehensible to most people, and the environment would not be suitable (they would grow from birth in terrible conditions and will not be able to study normally at school, which is why they would be considered inferior, and doctors would advise to pierce their eardrums to make them normal). But this does not mean that hearing is a disease.
If you are a neurotypical person, then imagine yourself in a world in which everyone is autistic. Your sociability seems to others an alarming sign of your mental illness, the habit of looking into the eyes of your interlocutor is considered defiant behavior, the volume of your voice seems inadequate. You can neither understand what people want from you, nor convey your needs. When you create professional documents and conduct business correspondence, you are told that it is absolutely unacceptable to write so much, undefined and vague (nobody understands what you are trying to say), and that you should write briefly, precisely and concretely (but it's a huge problem for you!). It is hardly possible to maintain mental health in such an environment.
Now you understand that there is no contradiction between the fact that autism is not a disease and the fact that autistic people need support in the context of the existing society.
From A letter from the autistic colleague you didn't know you had:
"Not all disability is visible
I don't perceive the world the same as all other autistic people though - we really are all different. There's a range of characteristics of autism that we have to varying extents. For me, the main things are that I find being around people tiring, loud noises or background noise overwhelming and impossible to ignore, and a very deeply ingrained sense that I need to hide who and what I am. That last one is what comes from spending my whole life, until I was diagnosed three years ago, feeling that the ways I was different were my fault. I came to believe that if only I tried harder, if only I was less lazy, if only I was less selfish, I could be normal. But I can't. What can happen is that autistic people experience such trauma from others' reactions to their autism that they learn to hide it. That's what happened to me - but it's not any sort of "cure". It makes the situation worse, because the person learns that not to hide who they are is to be rejected and ostracised."
Psychological problems - bad mood, anxiety, depression - are more common among autistic people (they have a rate of depression nearly 4 times higher than the general population). For example, typical social anxiety includes fear of rejection or judgment in social situations. Autistic people may also be anxious about not having access to their special interests or about disruptions in routine. These problems can be caused both directly by autism (i.e., associated with physiological characteristics), and with the difficulties that autistic people experience living in a world that is not adapted for them, especially if they constantly put on the mask of a neurotypical in order to "be like everyone else", and also spend a lot of effort to continuously translate external signals of the world from neurotypical to autistic language. Most likely, these two sources of problems overlap.
In one article, I found a very correct definition: "Anxiety often takes on unusual forms in people with autism, turning any uncertainty into constant fear". Autistic people tend to have repetitive behaviors and obsessions with something. Now imagine that such a person is focused on negative thoughts! Of course, anybody can become anxious sometimes, but autists approach this "professionally", making disturbing thoughts their "special interest." This topic is well covered in the article What is anger rumination and how does it affect individuals with ASD.
I got rid of my general anxiety with zinc and caffeine removal, i.e. my problem was at the biological level. I do not know whether it is associated with autism - it may well be. BTW, getting rid of obstructive sleep apnea has also greatly contributed to the reduction of psychological problems. Note that there is a link between autism and obstructive sleep apnea.
Be sure to read the articles Autistic burnout, explained and ‘You don't look autistic’: The reality of high-functioning autism!
Autists are more likely to die prematurely. I think that the reasons are both in psychology ("software") ("all diseases are from the nerves") and in different physiology ("hardware"). Note that autistic people are much more likely to commit suicide:
"The researchers found that people with autism died 16 years earlier at an average age of 54. Adults with the condition and learning disabilities died more than 30 years earlier than people without autism at an average age of 39.5 years. Adults with autism and without a learning disability died on average 12 years earlier, at 58." (The source)
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. 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.
The traditional ("medical") model defines disability as a health disorder. Accordingly, the minimization of violations is carried out through medical intervention and therapy. A person with a disability with this approach is a problem, he/she must be "cured" in a mandatory manner.
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 person with a disability is not a “bearer of a problem” requiring special education. On the contrary, problems and barriers in the life of such a person create society and 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 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."
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 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):
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'.
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 and laugh. Sometimes they slow down a bit, stumble and have a hard time finding words. 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"). One may get the impression that the speakers are not sure in what they are saying, which is absolutely wrong (they certainly have no problems with this!) or pretend to be overmodest (which is also not true - they really are as we see them). By the way, now I understand why I refused video interviews, which I was asked several times to do about intermittent fasting - I would be looking very unprofessional, not to say ridiculous. And I'm not a video blogger who talks about autism (so viewers are aware of unusual behavior). So if you have stage or video camera anxiety, it could be your neurobiology!
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."
"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!
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.
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 "That's not you," "I'm so disappointed in 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 tread, 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-propelled"), 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.
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.
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 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 love, but investigating and resolving bugs of other developers is a pain for me. It's hard for my 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 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 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 told about an experiment. Three groups of people were playing Chinese whispers, i.e. passed 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 my emails. If I find an imperfect technical solution in code, written by other developers, I always pay attention on that. I often think: why did they write simple things in so 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 succeed in society. 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 insert me into 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 long time like a horse, and then suddenly feel crushing - 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 dollar, 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. Sometimes it's hard to convince myself to drive for a supermarket for grocery shopping (it's not just a required action - it's also contact with people!).
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". Another wording (from PDA - a guide for autistic adults): "People with a PDA profile are driven to avoid everyday demands and expectations to an extreme extent. This demand avoidance is often (but according to some PDA adults, not always) accompanied by high levels of anxiety." 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". This is a medical condition not related to laziness. PDA is a standalone diagnosis on the autism spectrum that is usually observed in combination with others (eg, Asperger syndrome). 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 opposite - I do that with pleasure, and can spend long time collecting information or working with passion. Before buying an electronic device, I do a serious research in 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 health care 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 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!
The following quote from the Wikipedia article Monotropism is very interesting. It explains that many of my autism traits described above are different manifestations of the same phenomenon:
"Monotropism is a cognitive strategy posited to be the central underlying feature of autism. A monotropic mind is one that focuses its attention on a small number of interests at any time, tending to miss things outside of this attention tunnel:
A tendency to focus attention tightly has a number of psychological implications. While monotropism tends to cause people to miss things outside their attention tunnel, within it their focused attention can lend itself to intense experiences, deep thinking and flow states. However, this hyperfocus makes it harder to redirect attention, including starting and stopping tasks, leading to what is often described as executive dysfunction in autism.
Since the amount of attention available to a person is limited, cognitive processes are forced to compete. In the monotropic mind, interests that are active at any given time tend to consume most of the available attention, causing difficulty with tasks that demand a broad attention span, including conventional social interaction.
Monotropic individuals have trouble processing multiple things at once, particularly when it comes to multitasking while listening. In order for a child to be diagnosed with an ASD, they must exhibit a restricted and repetitive behavior (RRB). These behaviors arise due to the inability of the monotropic individual to shift attention and cause obsession with an object or ritual."
You can find more details in Me and Monotropism: A unified theory of 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 wans 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 asking 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 expectation? Why not to just say "Hi"? 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.
• 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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Aspergers from the Inside
Yo Samdy Sam
The video Everything You Need To Know About The Online AQ Test, mentioned earlier, was the Part 1, now watch the Part 2:
Just a fragment of the previous video transcript:
"When you've spent your whole life not being believed, to finally find people and a community that do believe you, and do validate you, and do say crazy things like, "I understand." It's absolutely life-changing to have that experience that you previously thought no one else had, and no one else could possibly understand, to have that validated, and to find out other people have had this experience as well. That is why diagnosing yourself as being autistic can be an incredibly powerful moment in a person's life to realize all of those things."
Book Welcome to the Autistic Community
Must read not only for autists but also for employers, managers, tech leads & HR:
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